Philip was diagnosed with Spinal Muscular Atrophy (type 2 severe) when he was 18 months old and was only given 4 months to live! Philip is unable to walk, crawl, sit unsupported or move himself from one position to another and cannot roll or lift his arms up. He wears a spinal brace all day every day. He has limited movement in his hands and cannot lift anything or reach beyond arms length. He has a very weak grip and cannot do any day to day things like brush his teeth, get dressed, eat or drink by himself. He needs help with everything he does and tires easily.
Philip is prone to chest infections. He is unable to cough and has very weak lungs and goes into hospital regularly with pneumonia throughout the year. During the cold and damp weather and through the whole winter Philip is confined to being indoors as the cold and damp air affects his lungs. At home he has a Nippy 3 ventilator that helps him to breathe. He may have to undergo surgery to put a rod along his spine in the near future.
Despite all this Philip is a very happy, patient and lovely little boy who amazes the doctors and specialists he sees with this strength and courage throughout.
Philip’s favourite things are playing in his wheelchair with his brothers and sister. He never complains about what he goes through and rarely does he moan about being unable to join in with ‘normal’ things that this friends are able to do.
Update 4th November 2016
Philip has had a bad month with his chest and was admitted to hospital at the beginning of the month. He’s much better now though. Thank you so much for all the cards and gifts they’ve all received!! I’m so sorry I’ve not thanked everyone personally or on the Facebook page but they have all really appreciated everything they’ve been given.
Update 5th September 2016
Philip has been ok this month. He received his GCSE results where he got 1 A*, 5A’s and 2B’s. He also had his gastrostomy tube changed to a Mickey button. The operation went ok but he required a lot of help during the intubation and the anaesthetist said he has an extremely difficult airway!! They damaged his throat and vocal cords during the procedure and caused a chest infection too but he has been recovering well. We spent a week in the children’s hospice, which was most needed! And then we had an absolutely amazing time at Chessington World of Adventures arranged by Post Pals themselves. Philip does seem to be struggling with his chest a bit more now and we are due to see his specialists about it soon. On the good side he is just about to start sixth form in a new school. He’s a bit anxious about it though.
Thank you so much to everyone that has sent cards, letters and gifts to Philip, Matthew, Joanna and Jacob. We appreciate every one of them! It’s just been an extremely busy month so have not been able to say thank you to everyone.
Update 28th July 2016
Philip has finished his GCSEs now and we are anxiously awaiting his results in August! We recently got him a Labrador puppy which is going to be trained up as an assistance dog for him to help him have a bit of independence. He’s been really well these last couple of weeks and has actually managed to enjoy the sunshine!! Thank you so much for all his gifts and birthday cards he received!! He had a fantastic birthday.
Update 8th June 2016
Philip is really quite unwell at the moment and struggling to keep up with his GCSEs. He has so far been able to stay at home with oral antibiotics and constant chest Physio, suctioning and spending a lot longer on his bipap. The community nurses have been to see him and taken a sample so hopefully will get it sorted without a need for a hospital visit! Thank you to everyone that sends letters and parcels to Philip, Matthew, Joanna and Jacob. It really is special to them.
Update 4th May 2016
Philip has had an ok month. He has missed a couple of days of school due to hospital visits and illness, but is now back at school. He did his first GCSE yesterday and is getting quite tired from all the work and is feeling very stressed. We took him to the cinema on Friday to watch the new Captain America film which he loved and was a nice chilled out time for him. Thank you so much for all the gifts he has received this month. He loved the star wars card and stickers!
Update 6th April 2016
Philip is doing ok this month. Still battling the chest infections, but with the warmer weather he’s definitely improving! Really enjoying the Easter break and finally being able to go out as a family! We did our first family outing yesterday to a local zoo and it was so fantastic being able to just get outside together and get some fresh air for the whole day! Other than that he’s just been chilling out as much as he can as his GCSEs are nearly here, with his first exam beginning of May. Thank you so much for the books that have been sent to them all, they were all so excited and happy with them!!
Update 7th March 2016
Philip has not been so good this month, quite chesty and suffering from pains in his chest. He has also lost a lot of weight so we’re currently experimenting with new feeds.
Update 6th February 2016
Philip is generally doing really well. He’s currently revising for his GCSEs, and has only had to have a couple of days off school due to illness, which is fantastic! He absolutely loved his Star Wars pop vinyl he received, thank you so much! Jacob asks every day if there is post for him. It really makes all their days when then receive things, so we are extremely grateful to everyone that has sent letters and gifts!
Update 7th January 2016
Philip has had a really good month, and for the first time since I can remember he was extremely well over Christmas! He had a great Christmas, and because the weather has been quite mild in December he has actually been able to go out and enjoy some of the Christmas events going on locally for the first time ever! He absolutely loved going to the cinema to see the new Star Wars movie and has already seen it twice! We all want to thank you so very, very much for all the cards and gifts everyone so generously sent over the last month! We had great fun opening the presents on Christmas Eve! And they were all greatly appreciated! Happy new year to everyone, love Philip and Susan (Philip’s mum).
Update 2nd December 2015
Philip has been very chesty these past few weeks and is on constant antibiotics, but it’s been keeping him out of hospital and he is very happy in himself! He’s doing great at school. He is extremely excited about the new Star Wars film that is about to come out and is looking forward to going and seeing it!
Update 13th October 2015
The cold weather has started and so has the chestiness. Philip has already had a chest infection this month.
Update 26th September 2015
Philip has had a couple of chest infections recently and another one is currently brewing. The change to the cold and damp weather really affects him. We are also still waiting to hear about his hips!
He had a great month in August, though, and was able to go out to some places like the cinema and London Zoo! He also had a couple of weeks in the children’s hospice, which he loves going to, and that helped to refresh him.
Update 5th August 2015
Philip has had a good month! We are currently away at respite for some much needed rest now that the school holidays have started!
We’re still waiting to hear about his hip operation and have some hospital appointments coming up, so hopefully we will get some idea on when it may be.
Thank you to everyone for all Philip’s birthday cards in June, he received so many and loved them all! Thank you to everyone that has written to him as he does appreciate it all, but is sadly unable to write any replies himself.
Update 23rd July 2015
Philip had another hospital admission due to aspirating again, but after a week in hospital and a following week in respite at his hospice, he was able to complete 3 of his GCSEs!
Update 1st May 2015
Philip started suffering from some seriously bad pain in his hips and back again last month so he is unfortunately back on regular pain medication. We also think we’re going to have to speed up his hip surgery to sooner rather than later due to his pain. We were hoping he’d be able to get through his exams first but now we’re not so sure.
We managed our first holiday together in over two years! Things didn’t go to plan with Matthew, Philip’s brother, being rushed into hospital with suspected meningitis! However, it was just some strange virus instead. It was very unusual being in hospital with Matthew and not Philip! Philip’s eclectic wheelchair also had some bad problems with its battery and kept draining, so we were a bit limited in what we could do, but other than all that it was just nice being together as a family!
Philip entered a chess competition and has got through to the UK finals! It is being held in Reading in July!
Update 11th January 2015
Philip had a much better end to the year after such a bad year for him with his health. We have had a couple of appointments with the consultants in December concerning his hip operation and are just waiting for some respiratory results before they will set a date. We are really hoping to be able to take him on holiday before his operation as the consultants are quite concerned about his recovery and how long that may actually take. His last holiday or any time away was in May 2013. He is a bit more settled with his health at the moment and hopefully it will stay like that for a while.
Philip is now struggling more with his hands so is not able to enjoy Lego anymore like he used to. He tends to just watch a lot of dvds now but more teenage ones. He is crazy about anything Marvel! He is still able to play his ps4 as he has an adapted controller and has his iPad and now a touchscreen laptop. He really loves reading comics and computer magazines as they are light and easy for him to hold.
Thank you for all the Christmas cards we received and thank you so much for all the fantastic gifts that were sent to Philip, Matthew, Joanna and Jacob. They opened them on Christmas Eve and we are so overwhelmed by your generosity!
Update 1st December 2014
Philip has had a good month! He has had a couple of chest infections and one got quite serious but we was able to manage it at the children’s hospice rather than hospital.
He has been really struggling with his food as he was allowed small tastes of food that is the right consistency, but even that now has been making him aspirate so we are waiting to speak to speech and language about what to do about that. He has his peg now so is tube fed anyway, but it’s just that Philip still likes the options to be able to eat.
He saw a hip surgeon last month too who wants Philip to have another operation – this time to replace both his hips, so at the moment he is undergoing some tests to see if he can safely have the operation.
Other than this Philip is definitely starting to be like his old self again (a nurse at the hospice said he was getting his mojo back at last).
Thank you for all the cards received so far, they are going up on Philip’s bedroom wall. Thank you for the horrible history games Matthew and Joanna received, we had great fun playing them as a family!
The children really appreciate being a part of Post Pals, thank you so much for everyone’s time and effort and to everyone who has sent them things!
Update 9th August 2014
Philip has had a really tough year this year. He got pneumonia, RSV and influenza H over Christmas and New Year requiring him to spend 6 weeks in hospital on an invasive ventilator. Due to this he has now lost his ability to swallow and so is tube fed. He is very upset about this and has lots of times when he is very miserable. He has unfortunately started to notice he is deteriorating, he has very little movement in his hands now and is awaiting a specialist controller so he can continue to play his video games on his playstation. He still really enjoys watching films though.
He now requires night time ventilation with a humidifier every night plus nebulisers twice a day which is increased when chesty. He now also has to have his mouth/back of his throat suctioned a lot of the time and uses a cough assist machine twice a day to just clear anything that might be on his chest.
As we are coming out of the summer, Philip will be confined to being indoors and missing out on school again as the risk of him getting chesty is very high.
Philip is a typical teenager but is finding life a bit difficult at the moment and is having to accept that his friends are able to do things he cannot. He is missing out on things, as well as the added blow of now not being able to eat anything anymore.
Thank you so much for Philip’s Star Wars activity books and his Star Wars toys, he really loves them!
Update 3rd January 2013
Philip was admitted to ICU on New Years Eve suffering with pneumonia and a stomach bleed. He was in a lot of pain and really struggling on Bipap so was placed on a ventilator and moved to PICU in London. Yesterday they needed to increase the ventilation and today he has taken a turn for the worse with his right lung completely collapsing.
Update 26th November 2012
Philip is going downhill with his muscle strength and eating is not great after his stay in the hospital last month. He is waiting for an appointment for a video fluoroscopy to see what is going on and we’re going to take it from there.
Last week we saw his spinal surgeon who wants to operate on his spine as soon as he can so we’re looking at March time, but due to his chest being so weak and being on bipap etc, he wants to have a respiratory check done at hospital first, to see if he can actually survive an operation. We’re not really sure what they will do if that doesn’t go to well, as the doctor has said his back is quite bad now and crushing his lung, which is causing the recurrent chest infections he keeps getting, so he actually needs the operation. Philip is terrified and to be honest so am I. He just seems to be struggling so much with everything, even little hand movements that a couple of months ago he was able to do. On the bright side, he doesn’t let it get him down and is still smiling.
Update 10th June 2012
Philip was in hospital over Easter with pneumonia and a collapsed right lung.
He’s actually going through a rough time at the moment as he’s starting to realise how much he can not do and is getting frustrated, especially with equipment like his bi-pap, as he hates using things but knows he now needs to and this is starting to make him depressed. He is also not able to eat very much and on the 26th of this month we are going to London hospital to see his specialist to discuss his deteriorating and possible tube feeds, which Philip is VERY worried about!
Anyway, thank you soooooo much for all that you do and he does love getting his post!
Update 23rd May 2012
Philip has deteriorated quite a bit in what he can do since he joined Post Pals. His hands are so much weaker than they ever were so he is pretty much unable to lift anything now, including food. He pretty much spends his time playing on his iPod as its all touch sensitive and watching DVDs which he loves! He keeps getting chest infections which are a sign of him worsening and is now using his bipap ventilator at home every night and whenever he is struggling.
Thank you for everything and all the post the kids get as it really does make them smile!
Update 30th May 2011
Philip’s operation went well and he recovered a lot quicker than the doctors expected, so he was able to transfer to the hospice a lot sooner than expected too. He is very tired and struggling a bit but is doing really well. Thank you for all your kind messages!
Update 25th May 2011
Philip goes into hospital on Friday for his operation and I just wanted to say thank you for all the cards and teddy he received. I will let you know how it goes. I’m more worried about it than Philip!
Update 13th May 2011
Philip had a long day today at the hospital for his pre-op assessment but was REALLY pleased when he got home to find parcels waiting for him. I just want to say a HUGE thank you so much to everyone who has sent us post!!
Nia was diagnosed on March 30th 2008 with Acute Lymphoblastic Leukaemia. After the initial month of treatment we found out that she had a very aggressive and rare type with Philadelphia positive chromosome. We were told the only chance of cure would be aggressive high dose chemo followed by a bone marrow transplant. Nia’s Mum, Corinna, was pregnant with Nia’s younger brother, Finn, at the time so there was the big hope that Finn may be a potential donor (there is a 25% chance of a sibling being a match). Unfortunately he was not a match and an unrelated 10/10 donor was found.
After a lot of ups and downs, and on the third attempt, Nia received her bone marrow transplant on December 5th 2008 and suffered lots of complications post transplant. She was allowed home on March 31st 2009 – nearly 1 year to the day after original diagnosis.
Nia had a good recovery post transplant and started full time school again in January 2010 – nearly 20 months after leaving school. She went straight back into her old class, having missed all of Year 4.
We then had the devastating news on April 30th 2010 – Nia relapsed and is now undergoing further intense chemo and has not been out of hospital since May 1st. Her biggest dream is to be home for her birthday on June 18th in 10 days time.
Nia was also born with a very rare heart condition called ALCAPA which was only found when she was 10 months old. She underwent 2 open heart surgeries in 2001 and 2002. Both illnesses are extremely rare (about 2-3 cases in the UK a year) and are not related – so a chance of a child having both is nil – she is truly unique and we hope she will make it through this extreme challenge as well.
Update 20th May 2014
Nia is moving on from Post Pals after 4 years of being with us. When Nia joined her cancer had relapsed and she was facing a very high risk transplant but now is in remission and chemo free! Thank you to everyone who made Nia and her brother smile.
Update 2nd December 2013
December is quite busy with hospital appointments for Nia. December 5th is actually her 5th anniversary from her bone marrow transplant which would have been a big celebration (if she had not relapsed) so it is a bit of a bittersweet day for us. I remember being scared 5 years ago, but also so full of hope for a cure and that this nightmare was behind us, but now having lived with cancer for so long I understand that we are lucky enough to stay in remission, but it will be hard to say if she is ever cured.
Nia would love to write back to some of the Post Pals that write to her that are around her age – please include an email address.
Update 28th September 2013
We are still waiting for Nia’s mole results. It is classified as an abnormal mole but is now sent off for a second opinion – like so many things in the cancer world, it is not straight forward and we don’t know yet if it is cancerous or not – so the waiting continues.
Nia started year 9 and Finn year 1. Finn loves reading and reads everything he can get hold of (so loves reading his cards, especially typed or nicely written ones) and Nia had a good start, but already missed last week due to a cold. Usually from now until March, with all the colds around, she suffers a lot and misses out on school and being in year 9 it is not easy. She has a pile if schoolwork she now needs to catch up on that she finds very daunting.
Update 9th September 2013
Nia and Finn had a nice summer break and Nia enjoyed her time at the Over the Wall camp this year immensely. It really helps her being away from home (and maybe her Mum as well since I always worry about her) and just trying out new things. Both kids also attended a swimming class, and Nia moved right up from level 2 to level 4. She was a fairly good swimmer when she was 7, but lost all of her confidence after not being allowed to go swimming for over 5 years… but she just loves being in the water. Finn is not so sure about it yet (I never took him swimming since I did not want to make Nia upset since she loved swimming so much) so he is really worried about getting his eyes wet (let alone trying to go under water) but I am sure he will get there as well.
The summer ended a bit on a worrying note since Nia had a biopsy done to check for skin cancer since she had a very suspicious looking mole in her arm pit (so away from the sun light) so we are currently waiting for the results. Since she had full body radiation as part of her transplant, secondary cancers are unfortunately quite high risk. So it never feels like we can just leave it all behind and stop worrying. She also had another biopsy done of her bone marrow and spinal fluid which we hope comes back clear of any traces of leukaemia. She is still on daily maintenance oral chemo that targets the Ph+ chromosone, and the current plan is to stop it by the end of the year – which would be great for her, but somehow it always felt like this may be the bit that keeps her in remission, so I am a little bit nervous about stopping it, but again, I am not the one that has to take it (and suffer the side effects). Unfortunately with rare cancers there is not much data that helps making decisions and often it is trial and error – and if it is your child, you do not want to have an error!
Update 12th April 2013
We had a wonderful family holiday going to Florida to “give kids the world” and it was truly a one in a lifetime experience. Unfortunately, Nia was not very well when we arrived, but I guess we are used to it now, and just took it easy, and enjoyed as much as we could without overdoing it (which is easily done being in Florida). But seeing both of my kids being so happy was truly priceless and this trip will be forever in our memory. So it was lovely that the project of the month was “keeping memories” and both kids put together a little scrap book of our trip (and I made 100 page photobook which I had printed – took me ages but well worth it). Both kids have been in hospital – I guess both of them don’t deal well with the cold weather and it is just about time that spring is coming.
March 30th marked 5 years since Nia’s original diagnosis. I remember back then when we were told her treatment may last up to 3 years I thought nobody can manage that… not knowing that our journey would be so much longer and still ongoing. Needless to say I am so proud of Nia and being able to handle all what life throws at her, but also Finn, who was born into the mid of it all and has been such a lovely and caring brother. Nia joined Post Pals after she relapsed in 2010 and we are so grateful for all the love and support we have been getting. Finn is just starting to read now, and he loves getting cards that are nicely written that he can read by himself – some of the ones he got he must have read now over 100 times, just being so proud that he can read. One of Nia’s highlights of the trip to Florida was to meet Sophie, a Post Pal that wrote her from Orlando and was volunteering at Give kids the world.
Both kids loved last months theme – making Memories – and Nia got a lovely scrap book with lots of stickers and Finn got one as well… so they were busy putting memories together from our last holiday. Nia is really into sugar craft these days too – we found a local sugar craft club and so far she’s been able to attend 3 times and loved it.
Update 1st December 2012
Both Nia and Finn are trying to settle into a school routine, but there are still a lot of interruptions due to ill health, and especially viruses going around school. In the first 3 months of school (Finn just started school in September) it has been only 1 day that both kids have been in school all day. Currently there is chicken pox going around in Finn’s class and I am afraid he may now be next. Chickenpox is such a “minor” illness for a healthy child, but can be life threatening with a child with no immunity – and Nia is quite neutropenic again these days, no real explanation why since she had not had any high dose chemo for a while (only “maintenance” chemo), but since she had so much treatment and all the chemo given on a transplanted marrow (so not really her own), her oncologist thinks her marrow is just tired. I’m not really sure what this means long term and if we face the risk of her marrow failing, but what I learnt is just to take one step each day, and if my kids are happy, that is good enough.
Post Pals, as ever, help an enormous amount – one day Nia was really down and got a fun present with some interlocking straws – entertained her for hours. I’m not sure who it was from, but it was so much fun. Finn is always excited about any mail, he got a lovely pillow that is his favourite bed time accessory at the moment.
Update 5th March 2012
Sorry I have not updated for a while… I know quite a few Post Pals follow Nia’s story on caringbridge and overall no news is good news. As always, Nia’s had a lot of up and downs, and winter is never a good season for her, but overall I guess she is as good as she can be. We are nearly approaching 4 years since her first diagnosis and sometimes it is good that you don’t know what is around the corner. I remember hearing that she may need 2 and a half years treatment if it turns out to be ALL, but mostly outpatient, and 6 months if it is AML, but mostly inpatient. And then 4 weeks in we found out she had the rare Ph+ chromosone ALL which then meant nearly 14 months inpatient, then a good year at home recovering, and then after relapse another 5 months mostly inpatient… and she is still in treatment. I would have thought we could never ever do it, but if you are in it, you just learn to go along with it all and cherish the times at home when things are as stable as they can be. This disease is just so tricky and just loves to interfere with any plans. She manages to go to school frequently enough, but still struggles with feeling part of her peers, it is a very difficult age anyway to know where you belong, but missing lots of school (she missed about 3 years total), and going in just on and off, is never easy. However her school itself has been very supportive and very helpful.
Finn has now finally got his room sorted and has a proper boys room (well, proper as in now blue, and no more pink fairies – used to be Nia’s old bedroom), and Mickey Mouse is currently his favourite. So we decided to go for posters so whenever he changes his taste, we can just redecorate by changing posters, no stickers like before that just don’t seem to come off again. He is such a funny little character and loves to get any mail with his name on. This morning Nia got 3 pieces of mail (two of them hospital letters, so not that exciting), and he got none – I asked him if he was sad, and he shook his head… then a few minutes later he said that he is really disappointed… had no clue he even knew what it meant.
Both kids really enjoy their mail… Nia especially from her post pals that send mail on a regular basis and she gets to know them, and Tony’s regular shipment of Amazon books, and Finn he just loves getting mail… he usually carries it around all day, pretending to read it (and well, a few cards we had to read so many times that he actually knew them by heart). I always feel humbled by all of you taking their time bringing joy to my children – often something that is the parents main priority but so often with the challenges of managing this horrible disease gets overshadowed. Thank you so much!
Update 24th May 2011
The last few months we have been trying to settle into a routine at home which is always difficult after months in hospital and lots of ups and downs with Nia’s blood count. Nia is now on a 24 month maintenance chemo programme – after the first 6 months we didn’t achieve the level of chemo she should have – it feels like a dance – a few steps forward (adding/increasing chemo), then gigantic leaps backwards (stopping all chemo due to her blood count crashing). However, she managed to go to school a bit in early May (after over a year out again), which she enjoyed, but understandably was also very nervous. Her hair is coming back a bit (still quite short), and she enjoys wearing nice hair bands and bits that make her look more like a girl… the worst is when people mistake her as a boy (even when she is wearing girlish clothes – you wont believe how ignorant a lot of people are). She is still on her 4 weekly high dose steroid pulses for 5 days, which she really struggles with and we seem to plan our lives around those days since she usually is not able to do anything.
She enjoys playing with her little brother Finn, who is now nearly 3 and such a funny little fellow. Similar to Nia, he spent most of his life isolated from other children, since we did not want to risk him getting infections and spreading them to Nia. He made a little friend at the playground that he sometimes plays with though and enjoys it so much. So hopefully if Nia settles into school and her count stays more stable, he can start preschool in September.
Both of them love getting mail and whenever they hear the flap of the mail box in the morning they nearly race to the door to see if it is something for them. Finn can now identify all of our names and hands around whose mail it is (if Nia did not beat him to it).
Update 3rd February 2011
Thank you for all Nia’s post over Christmas! Post Pals is such a big part of Nia’s life now and definitely brightens up her day. Thank you for all your wonderful work and dedication.
Update 22nd November 2010
Nia has now finished her high dose chemo and is getting at least 2 years of maintenance. So we should be home a lot more, but since her bone marrow is so weak, just the first oral chemo made her really neutropenic and crashed her count (so we’ve had to stop it already). However there is no guidance of how much chemo/what combination chemo is best in Nia’s case – all the treatment plans after relapse are gearing towards a bone marrow transplant, but since she already had one, we just have to hope that keeping her on enough chemo to not let her relapse again. She is still however not allowed back in school (maybe spring 2011) and it is difficult to keep her happy and cheerful at home. She has monthly steroid pulses for 5 days which make her feel really miserable, make her diabetic and often make her wheel chair bound, so we are trying to make the most out of every day when she feels well enough.
Nia is really looking forward to Christmas, and is making lots of plans on how to decorate our house – the last two years we have not decorated much, in 2009 we even had a Eastmas (Christmas at Easter) since she was in hospital over the Christmas period – so fingers crossed we will be at home this year!
We are still in Oxford at least once a week and Nia is always excited to get some post when we go there since we usually spend most of the day in hospital. Thanks again for all your kind cards, letters and presents – this month Nia got a bunch of hand made cards from an English class in Slovenia, which was so lovely.
Update 30th September 2010
Sorry for not updating for a while – Nia is currently recovering from another high dose round of chemo, which would have kept her in hospital, but since luckily there were no beds available and Nia was relatively well, we spend a lot of time isolated at home and in and out of our local hospital. I am currently giving her IV antibiotics three times a day since she had a nasty line infection, but is recovering now. If her count recovers, the next round of high dose chemo is due to start next Wednesday. We hope to be back home by Halloween at the latest since this is Nia’s favourite holiday and she really hopes to have a little party at home with some of her friends and dress up.
Nia loves all the mail she is getting, and especially some of the regulars that she gets to know and feel like they are part of our family. Thanks especially to Rosie, Mandy, Gracie and Charlotte – just to name a few – you all definitely achieve smiles on my girl’s face and magically always seem to time your post when Nia really needs cheering up. We had a very low time with two of her oncology friends dying – a lot to deal with emotionally for a 10 year old. So thank you so much to all of you!
Update 5th August 2010
Nia is currently recovering from another high dose chemo round, but since her bone marrow is weak due to the previous transplant, the recovery always takes a lot longer than expected. We are still not sure if she is going for a second bone marrow transplant (which would not be done in the UK) or if we are going with more high dose chemo and targeted therapy.
Nia loves getting her mail, and she has a few people that write very regularly which is lovely since she gets to know them. It is particularly nice that some teenagers are also writing – for a 10 year old that is pretty cool. She got lovely mail from Gracie’s friends who had a sleep over and I think she felt a bit like she was part of it all. I am really sorry we do not get the chance to write back very often, and sometimes she gets nice gifts (recently a crystal growing kit) that it was unclear from whom. Finn recently got a card as well and was very proud of it – he is so used to Nia getting mail, and he was running around all day hugging his card (with a boat on it). You all definitely make my girl smile – which is priceless for me.
Update 6th July 2010
We have a mixed bag of news – good news was that after her induction, the bone marrow cleared and her donor cells came back, but then the bad news was that cells are back in the CNS (central nervous system) which now requires more intense treatment. She has at least two big blocks of chemo in front of her – one that is 7 weeks, the next that it 9 weeks – and with Nia being Nia, most of those blocks will take longer as well as radiotherapy.
I am sorry that we cannot thank all of you personally for your kind letters and cards – Nia loves getting her mail nearly every day – she copies all the email addresses with the intention to write back, but so far has not had the energy to do so.
Mollie was diagnosed with Foetal Warfarin Syndrome and Kyphoscoliosis on my 20 week scan, we were unsure of what to expect.
When Mollie was born she had numerous tests, we were told that she also had Dextrocardia and that one of her lungs wasn’t formed properly, she was also profoundly deaf in her left ear.
It wasn’t working as well as they thought it would with Mollie wearing her spinal brace, so at a month old Mollie had to have her first operation as she was unable to sit. It was really hard because she was so young and it wasn’t long before Christmas. Mollie came out of hospital 1 week before Christmas but was rushed back in on Christmas day with pneumonia, it was her first Christmas.
When Mollie had an MRI scan we found out that she has Chiari Malformation as well. Mollie had another operation in February of this year, so we are hoping things are going to be a lot better as she gets tired very quickly at the moment.
Update October 2014
Mollie is now moving on from Post Pals. Thank you to everyone who has supported her and her siblings over the years that she has been featured. The post has been much appreciated.
Update 30th April 2014
Mollie had a hearing test last week and although her hearing hasn’t got any worse in her good ear, she wasn’t very happy because they wouldn’t give her a hearing aid in the one that’s she’s deaf in. It frustrates her because people keep talking to her in her deaf ear.
Update 23rd April 2014
Mollie is being referred back to the hospital as she has been getting a lot more back pain lately. She is also going for a hearing test this morning.
Thank you for our post.
Update 30th October 2013
Mollie had some bad news at the hospital, her new consultant has decided that it’s too dangerous to do her spinal surgery, even though her old consultant said he would. He also told her that the reason she’s been having trouble with her breathing is because her ribs aren’t expanding enough, but there’s nothing he can do. He also said the reason she’s been getting pains in her ribs is because her hips are lopsided, but again there’s nothing he can do for her so he discharged her. Overall, not a good day. She goes to see the neurosurgeon next month so hopefully we’ll get some good news then.
Update 21st September 2013
Mollie has been having breathing difficulties but is going to hospital on Wednesday for a check up.
Thank you for Mollie’s post.
Update 3rd June 2013
Mollie has been having problems with her legs and bladder and we’re waiting for an appointment for the doctors.
Thank you to everyone who has sent Mollie post.
Update 31st March 2013
Mollie is currently getting a lot of back pain and having problems with her hips so we are waiting for an appointment to see her consultant.
Thank you to everyone who has sent post this month and for her birthday cards too.
Update 16th January 2013
Mollie is full of cold at the minute and has a bad cough. She goes to SCH next week to see her neurosurgeon to check everything is ok.
Thank you for her lovely post.
Update 24th November 2012
Mollie went for a check up on her spine last week and we were told that the hump on her back is getting worse so they’re going to keep an eye on it.
Thank you for all of Mollie’s post, it is much appreciated.
Update 24th September 2012
Mollie is enjoying being back at school and seeing all her friends. She was getting pins and needles in her hands whilst we were on holiday but has only complained a couple of times since we got home, so we are hoping it’s nothing serious. She sees her consultant next month so we will find out either way.
I would like to thank everyone who has taken the time to send Mollie post this month.
Update 14th March 2012
Mollie went for a check up last month and they said if her headaches don’t stop in a couple of weeks then she will have to have a lumber puncture. She will also have to go for an mri in a couple of months and if it has come back again then she will have to have a drain put in her spine, so we are hoping it doesn’t.
Thank you to everyone who has taken the time to send Mollie a card, email or gift this month as it’s very much appreciated.
Update 9th February 2012
Just to let you know that Mollie is now home and doing well (apart from falling down the stairs and having a lovely carpet burn on her leg). I would like to say thank you to everyone who has sent her post and good wishes.
Update 2nd February 2012
As Mollie’s brain surgery failed last time, she had to have it done again yesterday, but there were complications and she is in ICU.
Update 22nd January 2012
We have just found out that Mollie goes for her surgery on the 1st February so hopefully she will be feeling ok for her birthday as she is wanting a party.
Thank you to everyone who has taken the time to send Mollie a card, letter or gift, as it is very much appreciated, especially with everyone struggling money-wise after Christmas.
I think what Post Pals do is amazing; they manage to put a smile on a sick child’s face and don’t forget about their siblings who also need cheering up. Keep up the good work. I know how much it means to my children, so I can imagine how much it means to the other many ill children too.
Update 22nd November 2011
Mollie received her results for her MRI scan on Friday and unfortunately her operation in July wasn’t a success and it has grown back twice the size. They wanted to operate as soon as possible but Mollie has asked if she could have it done after Christmas, as she doesn’t want to be ill then. They have agreed to do it in the New Year.
Thank you for sending post to Mollie, it is much appreciated.
Update 16th October 2011
Mollie goes for an MRI next week to check to see if the operation was successful and then gets the results in November.
I would like to say a huge think you to everyone who has sent Mollie cards, letters or a gift this month.
Update 25th August 2011
Mollie has recently had her brain surgery and we went to see the consultant the other day and all was well. However, she is still having pain in her neck and some of the symptoms and although he reckons they should go soon, he wants her to have another MRI just to make sure it was a success.
I would like to say a huge thank you to everyone who has sent Mollie a card while she was in hospital and who has taken the time to write to Mollie this month. She loved all her post and it is very much appreciated. I would also like to say a huge thank you to everyone who has sent Mollie a gift, especially the Bratz type doll which she loved – she even went and bought another one with the money she got. We also made the badges the other day which she was sent and her brother made the keyrings with a little help from Mollie. Thank you.
I think what Post Pals does is amazing and it has really helped my daughter. She loved all the letters of support and little gifts whilst in hospital and they really cheered her up.
Update 13th May 2011
Mollie has been doing her SATS this week. She is also due to have an MRI next week ready for when she goes to see the consultant next month. This is to see if they think they need operate on her brain this year or not.
Thank you for all of Mollie’s post this month.
Update 3rd April 2011
Mollie had a great birthday. She had a friend to sleepover and went to see Justin Bieber – which was good, even if I do say so myself.
We had a bit of a shock when we went to see Mollie’s consultant, as her other consultant had retired and so she had a new one. We asked about the surgery she was going to have and the consultant shocked us by saying he was reluctant at the moment to do surgery. Apparently Mollie’s scoliosis isn’t as straight forward as in other cases and she has got many fusions in her spine and in her neck (which we weren’t aware of until then) and there would be more chance of her either being paralysed or having weakness in her legs. This could all leave her in a wheelchair, which her other consultant had never mentioned before, so it was a huge shock. Now we are just waiting to see if her spine gets any worse (which he is expecting) as usually in other cases once they’ve had surgery to correct the spine it stays like that, but in Mollie’s case it’s continuously getting worse (which we also weren’t aware of) so now we’re waiting to see what it’s like after her growth spurt and then decide what we are going to do.
Update 16th March 2011
Mollie went to see the neurosurgeon last month and they are waiting to see what the scoliosis doctor wants to do about her back, as he thinks brain surgery would help, so hopefully we will find out next month.
Mollie’s also looking forward to her birthday on Friday as she’s having a sleepover and also going to see Justin Bieber next Wednesday. She’s really excited!
Thank you to everyone who has taken the time to sit and write Mollie a letter or card this month or send a gift. I think what Post Pals do is amazing; a simple thing like sending post puts a smile of many an ill child’s face.
Update 10th January 2011
Mollie has just had her operation on the cyst on her neck. It was bigger than they expected so surgery took longer but it was a success and she is recovering well at home now.
Mollie’s in love with Justin Bieber at the minute and is hopefully going to see him in concert in March for her birthday.
Thank you for Mollie’s Post Pals post, it’s very appreciated.
Update 21st December 2010
Mollie’s having surgery on her neck for a cyst. She will be in for a few days but has got to have 2 or 3 weeks off school as they have got to cut part of her tongue away at the back and bone in her neck.
I hope everyone at Post Pals has a Merry Christmas and a Happy New Year.
Update 9th December 2010
Mollie is due to have surgery on the 6th January on her throat.
Many thanks to everyone who continues to send post to Mollie.
Update 14th August 2010
Mollie is being referred back to the hospital with her neck as the lump is getting bigger and spreading.
Thank you to everyone that has sent Mollie post, she really does appreciate it.
Update 5th June 2010
Mollie goes for the results of her MRI next month to find out if she needs the operation or not. She also has a lump on her throat which is getting bigger so she has to have that checked out as well.
Post Pals always manage to put a smile on ill children’s faces and also their siblings who sometimes feel left out.
Thank you to everyone who has taken the time to send Mollie a present this month, it’s very much appreciated.
Update 1st May 2010
We are currently waiting for the results of an MRI scan that Mollie had last week to see if she needs an operation for her Chiari Malformation as her symptoms are getting worse.
I think what Post Pals does is amazing and they manage to put a smile on my daughters face. She even waits for the post lady to come and gets a biscuit off him for the dog! Thank you to everyone who has taken the time to send Mollie post this month.
Update 10th April 2010
Mollie is still waiting for an appointment for an MRI scan as her chiari symptoms are getting worse and they are thinking of operating.
Thank you to everyone who has taken the time to send Mollie a card this month as she really looks forward to the postman coming to see if she has any post.
Update 19th March 2010
Mollie has been to see the Neurosurgeon today and they are thinking of operating on her chiari malformation as her symptoms are getting worse. They are going to do an MRI scan and take it from there.
Update 6th February 2010
Mollie goes to see the neurosurgeon next month to find out if and when they are going to operate and also for a check up on her spine.
We would like to thank everyone who has taken the time to send Mollie a card, letter, or gift this month, it is very much appreciated.
I think what Post Pals do is amazing. They always manage to put a smile on sick or seriously ill children’s faces and also remember their siblings so they don’t feel excluded. Well Done Post Pals.
A big thank you to the McQueen Family for the Lego Bionicles that they sent Morgan yesterday. He really loved it and it gave us a couple of hours peace as he made a fort for it with a shoe box and was playing with it for hours. It’s the little things that count.
Update 2nd December 2009
Mollie has been waking up a lot lately with bad cramps in her legs and has been getting a lot of headaches. She is really looking forward to Christmas though and thank you for her post.
Update 2nd November 2009
Mollie has now finished dancing as she was being bullied. Her legs had also started to ache a lot more with it.
Thanks for the mail that Mollie has received this month.
Update 4th September 2009
Mollie has had a really good month and thank you for the cards and gifts she received in August.
Update 20th August 2009
Mollie has had a good month and thank you for the Post Pal mail that has been sent to her.
Update 18th July 2009
Mollie as had a really good month this month, but was upset that she wasn’t picked at dancing to go to Disneyland Paris with most of her friends in a parade.
Thank you for the post Mollie has received this month.
Update 16th June 2009
Mollie had her sports day last week but was upset because she came last in all her races. She has currently got a bad cough again too and is up most of the night with it.
Thank you for the post she has received, we think what Post Pals do is brilliant and it cheers the children up.
Update 4th May 2009
Mollie has just been for a lung function test and they are looking into her maybe having some special shoes as one hip has gone higher than the other.
Mollie has also got her dancing show this weekend.
Thank you to everyone who has sent Mollie a card, letter, or gift this month. It is very much appreciated.
Update 7th March 2009
Mollie is currently having trouble with her throat and is awaiting an appointment at the hospital to check the cyst isn’t getting any bigger.
Thank you for all the cards, letters and gifts Mollie has received this month.
Update 11th February 2009
Mollie has had her operation postponed.
I think what Post Pals do is great and my daughter really looks forward to the postman coming. Thank you for all her post.
Update 28th November 2008
Mollie had a routine check up at the hospital a week ago and they have decided that they want to operate on her brain sooner rather than later which was a big shock.
Thank you for all Mollie’s post this month, it makes her day when she receives post.
Update 6th November 2008
Mollie goes to Sheffield next week for a check up so hopefully everything will be ok.
Thank you for Mollie’s cards this month. Post Pals cheers up the children who are feeling ill and it’s lovely to see the smiles on their faces when they open their mail.
Update 22nd October 2008
Unrelated to Mollie’s condition, her brother Daniel has been admitted to hospital due to a large mass in his knee bone. He now has his own page which can be found here.
Update 12th October 2008
Mollie has had a chest infection this month and has been poorly with it.
Thanks for the post sent to Mollie this month.
Update 30th July 2008
Mollie has been having more bad headaches this month and we are waiting to see the consultant.
Thank you for the cards, letters and gifts this month.
Update 7th July 2008
Mollie has had a chest infection on and off for the last 6 weeks, so she has to go to the hospital to have a lung test.
Thank you for all the smiles that you put on the children’s faces when they receive post and thank you to everyone that has sent Mollie post this month.
Update 29th May 2008
Mollie has just finished her show but has had bad pains in her legs and lower back. She loved being on stage and dancing though.
Thank you for the post Mollie and her siblings have received this month. Post Pals brightens up my children’s days.
Update 14th May 2008
Thank you to everyone who has sent Mollie a card this month.
Mollie is practicing for her show, so she has had a lot of leg cramps these last few weeks. She has also got to go for another x-ray on her spine because she has been getting a lot of backache lately.
Update 16th April 2008
Mollie has been having a few sleepless nights this month due to pains in her legs as she has been practicing for her show in May, but she will not give up as she is really looking forward to it.
Thank you for the letters and cards that Mollie and her siblings have received, they are very much appreciated.
Update 11th February 2008
Mollie is due at Sheffield on 14/02/08 to check that her spinal fusion operation was successful.
Post Pals is brilliant and I look forward to all the post that I receive. Thank you!
Update 17th December 2007
I went for a hearing test this month and nothing has changed. I am still deaf in my left ear, but my right hasn’t got any worse.
Thank you for all my post this month.
Update 30th October 2007
I am still enjoying my swimming lessons even though I was upset last week because everyone in my group had moved up to the next level, including Morgan my brother, but my mum says that everyone is different and that I will do it in my own time and not to worry. I go to the hospital next month to the scoliosis clinic and also to see the neurosurgeon so hopefully everything will be ok.
I would like to say a big thank you to everyone who has sent me something this month.
Update 1st October 2007
Mollie’s doing fine; we have just had her hospital appointment to see the Neurosurgeon postponed to next month and also a new appointment to the Scoliosis clinic come through, so hopefully everything will be ok.
Thank you to everyone who has sent Mollie a card, letter, email or gift this month, she has enjoyed every one of them and even took them to school for show and tell.
Mollie still loves Barbie, Bratz, reading, colouring, playing with her dolls (she’s even given her order for a new Baby Alive for Christmas already) and basically anything girlie.
Update 7th September 2007
We’ve just come back from our holidays. Molly had a great time but is very tired with bad headaches. She is still not sleeping very well and has started with nightmares quite a bit, but hopefully they will pass.
Thank you to everyone for all the post this month.
Update 14th August 2007
I have been having a few bad headaches over the holidays so I have got to go and see the consultant (not looking forward to that). Mum is worried because they have been ‘knocking me off my feet’ as mum says and I have been in bed for days at a time.
Thank you to everybody who has taken the time to send me a card, write me a letter or send me a gift. I have loved every one of them.
Update 18th July 2007
I am getting on really well and I had my first sports day last week and I really enjoyed it.
I would like to say thank you to every one at Post Pals, it is lovely what you do and if only you could see the smile on my face and all the other children’s faces every time we get post. All cards, letters and gifts are very much appreciated and loved.
Update 10th June 2007
Thank you to everyone who has sent me cards, letters and wonderful gifts this month.
Update 21st May 2007
Nothing has really happened this month apart from I’ve had a cold and now I have passed it on to my mum and dad (I like to share!)
I would like to thank everyone that has sent me a letter, card or gift as it is very much appreciated.
Update 3rd April 2007
We have finally heard about the lump on my throat. Luckily, it was just a cyst and I won’t need an operation on it unless it gets bigger. Apart from that everything is ok.
Post Pals really cheers me up every time I get a letter or card or even a present and I would just like to say a big thank you to everyone who has sent me post, including birthday cards and gifts.
Update 3rd March 2007
I have got to go and have a biopsy on a lump on my throat (I am not looking forward to this).
I would like to say how much I look forward to the letters and cards I receive and how much they cheer me up. Thank you for all the stickers and bobbles that I have received, I have had great pleasure in using these. I would like to thank everyone for my all my post, it was very much appreciated.
Update 9th January 2007
A lump has been found on Mollie’s neck so she has been referred to the hospital for tests to find out what it is, hopefully it won’t be anything serious but we will let you know. She has also been put on a different type of milk as she has lost some more weight.
We’d just like to say thank you to everyone at Post Pals for their wonderful presents and cards which made Mollie’s Christmas so special. It was lovely to read all the messages that you sent and Mollie wrote thank you notes so you should receive them shortly. Also a big thank you to everyone who sent presents to Mollie’s brothers, especially Georgies Fund who sent them wonderful presents. Thank you very much!
Update 1st December 2006
As Mollie as only been on Post Pals for about a week we are new to this. We were surprised how quickly she got a Christmas card though and would like to say a big thank you to Kate Dickinson as she was really pleased that she got the first card in the house, and I mean really pleased!
Mollie is really looking forward to her school Christmas parties as she has missed the last 2 due to hospital appointment and being ill.
Mollie just loves playing with her dolls (and has already given Santa her new list of dolls she wants this year, there’s only 6!) She loves colouring and at the moment we are making snowflakes to put around the house. She also loves writing and reading and was really pleased yesterday because she had gone up to level 9 in her reading books. She loves ballet and everything girly basically!
Megan was diagnosed with Neuroblastoma stage 4 in September 03, she was 6 months old. Megan’s tumour was in her chest compromising her breathing. Megan was transferred to London’s Great Ormond Street for treatment. The tumour in Megan’s chest was crushing all of her internal organs, making her unable to breathe on her own. She had to spend 2 weeks on a ventilator.
Eventually with chemotherapy the tumour was starting to shrink and Megan could be taken off the ventilator. She then had to have Chemotherapy to try and shrink the tumour in her chest and clear her bones, bone marrow and other organs of the cancer cells. This was a very rough time on the whole family, Joe had to go and live with my mum and dad for seven weeks.
Following chemotherapy test revealed that the tumour had shrunk and that the bones were nearly clear. Two more rounds of chemo would be done and then Megan would have surgery to remove the tumour. Surgery was scheduled for March the 26th 04, before surgery Megan had to have an angiogram and there was concern that a main vessel was running through the tumour. The angiogram showed that aorta was running straight through the middle. This would make surgery more difficult. Megan had surgery on March 26th, the operation was very successful, doctors managed to remove all the tumour apart from the small amount in her spine. Surgery was a complete success and Megan didn’t need any more treatment.
Megan is currently NED which is the equivalent of remission. Unfortunately due to spinal cord compression Megan has been left paraplegic has spinal scoliosis, and neuropathic bladder and bowel. We are just waiting for a wheelchair which should make life a lot easier for her and prevent her from getting so frustrated. She goes to a special needs nursery which she really enjoys.
Megan has a 20-30% chance of the Neuroblastoma coming back and she has to have MRI’s under general anaesthetic every 4 months.
She is a very happy little girl who enjoys life, but does get frustrated as she can’t do more.
Update 30th March 2013
Megan has just spent 2 weeks at Stanmore royal national ortheopedic hospital for intense therapy. She can now dress herself and has been learning to swim. In 4 days she has earned not only her 5 meter badge but also her 10m and I’m so proud. Stanmore have also decided Megan should be wearing a spinal brace again.
We have decided that it is time for Megan to move on as a Pal. Post Pals have supported us for a very long time and you have all become one of the family. Megan has had her final big operation (hopefully) and we feel it is time for another child to take her place and benefit from cheery post. I can’t thank you enough for everything you have done for Megan, Joe, and us as a family over the years. We would love to keep in touch and still attend the Post Pals party in the summer xxxx
Update 30th November 2012
It has been a tough month for Megan. Following her spinal fusion in October we have had problems with the wound. The stitches popped at the bottom of the wound and we have had several trips to A&E and GOSH. After what felt like several wasted trips we saw the spinal surgeon. He said that the wound would heal but would take a long time and wouldn’t be so neat. He felt the best thing was to re-operate and clean things up and re-stitch. This would make things heal quicker and enable her to get back to school. Well, we turned up for surgery and just as she was going to theatre they cancelled. So yes its healing slowly, will be an ugly scar, and I was very cross they cancelled again. We are going to leave things until we see the surgeon in January.
I am going to Lanzarote with Joe on Sunday for a week. He’s really feeling the last 9 years and we need time together. I don’t think we realise the effect on siblings. Megan has a very busy week when I’m away. A very special day which i am unable to share at the minute but will very soon.
Thank you for our post and to Becki for the personalised tatty teddy card. Massive thank you to Lisa Archibald for the fijit she sent Megan. Lots of giggles coming from behind the bedroom door!
Update 12th November 2012
Well, where to start? Megs was finally admitted to GOSH for a spinal fusion October 17th. She went to theatre around 10.30am and we didn’t get to see her until 5.20pm. It was the longest 7 hours of my life. Anyway, the surgeon was happy with how it went. She didn’t recover so well initially though. She was very poorly, in pain, and kept spiking a temperature. Slowly but surely we got there and came home after 8 days. We’ve had some healing issues and been to A&E a couple of times. The wound has opened at the bottom and we’ve had to be reviewed at GOSH today. The stitch was exposed so that has been removed and the wound had a good clean. The spinal fellow has said the wound will take ages to heal and no baths for a while. Also, there are some concerns about her circulation as one leg is hot and one ice cold, so we need to keep tabs on that.
Massive thank you for messages of support and cards, they have really lifted Megs spirits. She’s been quite down and she loves receiving posty. Also, huge huge thanks for the dog balloon from Post Pals. We have exciting news next month, so watch this space.
Update 3rd October 2012
Well Megan was due to have spinal fusion done on September 26th. GOSH cancelled less than 24 hours before surgery. Megan was upset as she had been all prepared. I was completely devastated and cried buckets for about 4 hours. They have rescheduled for October 17th but i don’t trust them until she’s in theatre now.
So, we have to keep her germ free now which isn’t going to be easy considering everything that is flying around.
We have ongoing issues with Megan at school at the minute. She is really struggling being the only child in a wheelchair. She feels she has no friends and it is all because of the chair. We’re not sure how to deal with this but maybe some time off to have surgery will give her time to think.
Thanks for the post, Megan received some Tracey Beaker dvds that she loves!
Update 9th September 2012
Firstly I’m sorry for the lack of updates. I have been going through an extremely difficult time.
We have had a very busy summer. We went to Hunstanton for a week to families against neuroblastoma holiday caravan. We had an amazing time and the weather was fairly kind to us. We went to the sealife centre, boat trips, theatre and spent time on the beach. There was another family staying in FANS other van next door and it was lovely to spend time with them. We talked about the kids illness and catheters and it just seemed so normal.
Health wise Megan is doing ok i guess. She has actually got a dislodged spinal rod so won’t be having her lengthening this month. The doctor feels she has little growth potential. He says the best thing would be a spinal fusion. I was devastated to hear this as she is still only 9. Anyway, long story short, we have decided to go with their decision. Megan is having her spine fused on September 26th. Im very anxious about this but know it is the right decision for her. We will be spending a minimum of 10-14 days in GOSH.
Update 12th April 2012
Megan had an amazing birthday; I can’t believe she is 9 already. She had a surprise party in the hummer limo that did the Jeremy Kyle show. It was a surprise and she was thrilled. Thank you for the lovely cards she received.
Megan has been doing her own catheters via her mitrofanoff for about a week now. She is so independent and coping really well. Its taken a while but i can now see the huge benefits. She has also just been reviewed and has been given a new spinal jacket. It is hard at the back and a corset at the front so hopefully she will tolerate this one.
We haven’t been doing much over the holidays. Mick’s mum has been very poorly so we’ve been at the hospital. She’s having tests but looks like it could be bowel cancer. Megan and Joe are both very upset but doing ok.
Thank you for the continued support and a massive thank you for the letters from Dottie, Megan loves getting them.
Update 11th November 2011
Well, where to start! I have so much to tell you all but at the moment it is a big secret so will share with you all next time.
Megan is doing ok; she has now started the hormone injections and seems to coping fairly well with no side effects. I will be doing the next injection with the community nurses and then I’m going it alone and Megan will be much happier with this. I have to say she was a complete superstar when she had the first one jab, no tears or anything.
Well we’re going to pre-op next Thursday at Great Ormand Street and then surgery the following week. She is having a Mitrofanoff/ACE and bladder augmentation. She will be in for about 10-14 days if all goes well and then lots of TLC at home until the end of January. We’re very anxious about this op but Megan can’t wait to see the after effects and hopefully be more independent. So, the hospital will be home from 22nd November for 2 weeks or so.
We’re still waiting for appointments with orthopaedic surgeon and neurodisability team. Nobody seems to know anything which is frustrating as we need to see them ASAP.
On a high note, Megan’s school is finally adapted (well, nearly). Major building works have now been completed and it is all the small jobs that are being finished off. We have 2 lifts and Megan is finally, after 4 years, able to access the school on her own now.
Well, I will update next time with our very exciting news!
Huge thank you, as ever, to Wendy who continues to send hand made cards to Joe and Megan, they’re always gorgeous. Huge thank you to Viks too for the flutter fairy. It always brings a tear to my eye to read some of the other kids’ updates and the kindness that strangers always show to them and Joe and Megan too.
Update 31st August 2011
Well, what a hectic summer. Megan had spinal surgery at the end of July and is recovering well. They managed to extend by 7 mm which is great. Sadly, we had a rotten time in GOSH this time. The anaesthetist knocked her tooth out and didn’t realise until we saw her chewing it. It could have been so dangerous. The ward had no pillows and was being run by agency nurses who didn’t know anything; it’s fair to say we were pleased to come home. Megan’s MRI of her brain came back normal which is a huge relief. She is going through early puberty and needs to start hormone injections next week. I am going to do them as Megan is needle phobic and would rather this. We’ve also had an X-ray done of her hips which shows they are subluxed and she is now being referred to the orthopaedic surgeons.
Joe had a busy week at the beginning of the holidays. He went away with summers trust, which is a charity that provides activity holidays for young caters. He had an amazing week and didn’t phone home once! He is starting high school on Wednesday and is terrified. I’m sure he will be fine and make lots of new friends quickly. To finish off the holidays we are going to London on Saturday. We’re planning to go on the eye, river cruise, pizza express for lunch followed by the aquarium. A lot to do in one day!
Thank you to all you amazing people who continue to put a smile on Joe and Megan’s face. Also massive thank you to Debbie who sent a card to me and Mick letting us know it was her first time posting to a Pal and wanted to check she’d sent the right things. Honestly, a cheery letter really makes a huge difference. Huge thank you to the cards sent for Joe’s birthday too. Viks we can always rely on you for some confetti all over the floor!
Megan wants to say a huge thank you for regular updates from Dottie, she gets really excited when Dottie’s letters arrive.
Update 1st May 2011
I can only apologise it has taken so long to do an update. Things in our household have been hectic to say the least.
Megan had an amazing birthday in March and thank you to everyone that sent cards for her.
Megan has recently seen the Hormone specialist and they have referred her for some tests to determine if she is going through early puberty. She will be having an ultrasound of her pelvis and blood tests done on 6th May at GOSH. If the results come back positive then she will need hormone injections to stop this happening until she is about 12. Megan has also recently been reviewed by the Spinal injury consultant at Stanmore. They are very concerned about her posture due to the leg spasms and scoliosis. Although the scoliosis is managed through spinal rods, her pelvis appears to be completely offline with her trunk. One of the biggest issues we have is trying to get good enough correction with the wheelchair. The specialist is going to speak to GOSH and decide whether Megan should be fitted with a Baclofen pump. They feel that this would help the spasms in her legs which in turn will help with spasms in her trunk making her so lopsided. We are a little unsure of which way to go with this; it would mean more surgery for Megan to endure so we need to speak to the team to see the best way forward. Megan is due to have some more Botox in the summer but we’re just waiting for a date. Megan will be due more spinal surgery in July to lengthen the rods, but again we’re waiting for a date.
The bowel and bladder problems have got worse and this is something I need to speak to GOSH about. She is leaking in between catheters and having more bowel accidents at school. This of course upsets her and she wants to know when she can have the Mitrofonoff/Ace procedure done. Again, she is on the waiting list but no-one seems to be able to tell me when this will happen. Everything seems to be a waiting game but this makes for a very unhappy Megan.
Joe was refused his place for high school so I’m having to battle this one also. He is the only child in his class that didn’t get his first or second choice. He has been offered a school the other side of Croydon which would mean he has to get 2 buses on his own each way everyday. The council might think he is old enough to do this but I’m sorry the world is a scary place and it just isn’t happening. I have applied to appeal and again I’m just waiting for a date. Joe was very upset by this decision as you can imagine. He cried solidly for 12 hours and had to have a day off school. I have recently spoken to his teacher who has said that his behaviour has changed since hearing the news. He isn’t being naughty and continues to work hard, but is beginning to talk a lot more and the teacher has just noticed a change in his mood. I really wish the people on the panel at the council could see how much he has already been affected by Megan’s illness/disability. I had a supporting letter from our GP but have been told it can’t be forwarded to the appeals team as there is no medical reason for him. I was really hoping that for once someone would give this family a break and not make us fight for everything.
Huge thanks for the Easter parcels that were sent to both Joe and Megan. Joe loved receiving the homemade cake lollies. Megan received a lovely big parcel containing lots of Easter crafty packs and chocolate. This kept Joe and Megan quiet for ages and gave me some peace! We had a very quiet Easter break at home but did manage to go to Littlehampton for the day then a meal on the way home. The weather has been superb so it is just been nice to have fun in the garden.
Mick is going for a week respite break in May with friends to Spain so I’m home alone with the kids. I’m secretly dreading it as know I will miss him like mad and will have no help with Megan’s day to day needs. The lifting is the biggest issue, but on the plus side I will be having a week respite in June. My sister and I are going to Portugal for a week, again I will miss everyone like mad, but the break will not come soon enough.
A massive thank you to Jane for the bracelet she sent through for Megan. Megan is convinced she went all the way to Lanzarote especially to get Megan her pressie, she loves it. Also, a huge thank you to everyone that continues to send posty to Joe and Megan. I’m not going to name you personally in case I forget someone, but you all make a huge difference to their lives. Joe and Megan especially love the post from Jane and Megan loves hearing about what Dottie has been getting up to. Rufus has been a little lazy lately but I have plenty of photos which I must forward on and add to his facebook page.
Update 2nd February 2011
I can only apologise for no update for December, I thought it had been sent off and have just found it. Thank you to everyone that sent cards and gifts to Joe and Megan. Megan had a dreadful Christmas and spent most of it unwell. She woke Christmas morning being sick and was ill for about 8 days. I’m fairly sure she had swine flu.
We have had many appointments with Megan already this year. Megan is officially now on the waiting list for the Mitroffonof/ACE procedure. I spoke with Great Ormond Street and have been advised that surgery is likely to take place in September/October time. They have said surgery will be about 6 hours and she will be in hospital anywhere between 2-3 weeks, all being well. They have advised she will probably be off school for anything up to 3 months. I am dreading the surgery but know it is the best thing for Megan in the long run. We are seeing the Botox team for assessment next week; her legs seem really tight so not sure how much they think the botox has helped.
We’ve had huge problems with Megan’s wheelchair; she really has grown so much. After countless phone calls Megan is now the proud owner of a new 15″ chair. We are still waiting for a special back and cushion but she is much more comfortable now. Building works should commence very soon at school so hopefully by September Megan will be able to access all parts of the school by herself.
Megan has really been having a very tough time lately. One of her friends at school had a birthday party and Megan wasn’t invited (one of the only ones not invited). She was absolutely devastated and had a dreadful day at school on the day of the party. All the kids were talking about the party and Megan’s carer said she was very sad and upset all day. She is blaming her wheelchair and saying she feels really left out. We picked her up after school and she spent nearly 2 hours screaming, punching telling me it was all my fault she is in a wheelchair and had cancer. It was so upsetting to see her like this but how can I deal with it? I know things will get far worse before they get better and this will happen again. We are due to see the team at Stanmore in March so I’m going to organise for her to see the Psychologist. She explained to me a while back that it will come to the point where Megan blames me and gets very angry about her illness/disability. I really didn’t think I would be dealing with that now though.
Thank you to everyone that continues to send posty, it really brightens the darkest of days. Thank you for all the postcards Megan has received, she loves seeing all the different countries. Thank you for Megan’s disposable camera, she is having so much fun snapping away. Also a huge thank you to Jenny for Joe’s Autograph book and photo album.
Update 3rd December 2010
We have had a few tough weeks with appointments etc. We saw a bowel specialist at Stanmore. Due to the location of Megan’s spinal injury her bowels will always be erratic. If the damage was higher or lower her bowels would be more manageable. The specialist feels Megan’s best option is to have the ACE procedure. This will be done at GOSH. We also saw an Urology registrar at GOSH on Monday. Unfortunately the specialist wasn’t there so no final decisions could be made. The registrar has said that Megan will need a Mitrofonoff and she has been put on the waiting list. All we have been told is she will be in surgery for 5-7 hours. I have been looking into both procedures and it is major surgery. They will also enlarge her bladder at the same time. We are terrified at the thought of what she will go through but know that the long term benefits far outweigh anything else. Megan is due to have spinal surgery on Tuesday. We’re still waiting to hear if this will go ahead with the recent weather.
Joe and Megan have enjoyed having time off school this week. We have managed to get Megan out in a sledge and they have both loved playing in the snow.
Thank you to everyone that has sent card/letters/gifts to Joe and Megan. A massive thank you to Dottie for all the updates and a huge thank you for the tatty teddy smelly set Megan received.
I would like to wish everyone a happy Christmas and all the best for 2011. Thank you to everyone that has made 2010 a very special year and a huge thank you to Viks and everyone that keeps Post Pals going xxxxxxxxxxx
Update 31st October 2010
Well, we have just returned from spending a week at The Thomas Ball lodge in New Milton Hampshire. We had an amazing time and the weather was amazing for this time of year. We tried to arrange to meet Dottie as she only lives around the corner but unfortunately couldn’t organise it. Megan seems to have a bug in her bowel and is having very large accidents 4 times a day. This upsets her so much as she is missing out on so much and was unable to go swimming whilst on holiday. Despite this we all had a great week; we went to the beach, spent a day in Poole, went pumpkin picking and then carved them. The hot spot of the whole week for Megan was busting some moves with Sammy seahorse. She really is a disco diva and purple people eater is her favourite party dance.
Back to reality and we’re going to Stanmore spinal unit tomorrow for 1 week. Megan is having intensive rehab so not really sure what to expect. I’m sure it will be a tough week but we will all gain so much from being there. We also have a date through for Megan’s next spinal op – December 7th. Not the best time as it means Megan will miss out on Christmas activities at school but it needs to be done.
A plus for the whole family will be a new arrival very soon. Megan’s big sister, Jenny, will be having a little boy in the next few weeks. She isn’t due until November 19th but has been suffering with very high blood pressure so it looks like she will be having a sweep tomorrow. We’re all really excited and can’t wait to meet their little boy who they will be named Alfie. Jenny has asked me to be a birthing partner along with her husband. I have always wanted to be a birthing partner so think I may be spending my week driving backwards and forwards to Stanmore so I can be there.
Thank you to everyone who continues to support us as a family. Megan received a lovely postcard from Dottie playing in the autumn leaves – she loves it, so thank you for those huge smiles Dottie. Thanks to Dottie AGAIN for all your letters. Megan loves telling Rufus what has been going on. A huge thank you to Kate Dee for the lovely Halloween goody bags Joe and Megan received.
Update 13th October 2010
Firstly sorry for the late update, I’ve been in Cyprus for a wedding so unable to send one.
Things have been fairly hectic for Megan lately. We’ve had lots of appointments and procedures over the past month or so. On a high to begin with, Megan had Botox injections into 3 different muscles in each leg in September. Following a follow up appointment yesterday, it has shown the Botox has been very successful. The measurements in her hips, ankles and knees have improved amazingly well. We are so pleased and also she seems to have fewer spasms in her legs which is great.
We finally managed to have her surgery last week to insert SP lines into her bladder. These were put in so her bladder pressures could be measured following how unpredictable her bladder has been lately. She has been having lots of accidents in-between catheters lately which have really been getting her down. At first we thought this may have been to do with a recurrent urine infection she has been getting. She’s had 4 lots of antibiotics for E-Coli in her urine over the past month. Anyway the tests have shown that Megan bladder is actually too small for her age etc. The specialists want to meet with us to discuss surgery. The want to give her a procedure called ‘Mitrofonoff’. I’m not really sure what this involves but know it is major surgery where they will re-route things so she can do her catheters through a hole in her tummy. At the same time they want to enlarge her bladder using her intestines. If she has this surgery then they also want to do some bowel surgery. I know even less about this surgery other than it is called the ‘ACE’ procedure. I know both surgeries are major operations with risks but they could give her quality of life and a lot more independence.
GOSH are concerned about how all her treatment/operations over the years have affected her physiologically. She is very anxious whenever she is having anything done now. She’s very low about everything at the minute and questioning her disability almost everyday. She’s beginning to get very angry about day to day things. I know it will get harder before it gets easier but it is tearing me apart seeing her suffering like this. I’m going to have a chat with the psychiatrist at Stanmore and see what she recommends.
Megan is being admitted to Stanmore hospital on November 1st for a weeks intensive rehab. I’m hoping that she will get a lot out of it and maybe make some friends in the same boat as her. I’m not really sure what to expect yet as it is the first time we’re doing this. We’re also waiting to hear from GOSH about her next spinal operation which will be done Nov/Dec time. Everything is just so busy at the minute, I feel like I haven’t been at home for months.
We’re away for half term to The Thomas Ball lodge in Hampshire, both Joe and Megan are looking forward to dancing with Sammy seahorse.
The biggest highlight of Megan’s life so far is Rufus. Rufus is a litter mate and was given to Megan by Dottie the Dalmatian. Rufus goes everywhere with Megan, he even shares her bath water. We have set up a facebook page to keep everyone updated on Rufus’s travels. He’s having some lazy time at the minute before he will be very busy looking after Megan when she is in hospital. He’s also looking forward to going to meet Sammy seahorse.
A massive thank you to everyone who continues to send posty to Megan and Joe. Megan loved her ‘summer themed box’ and also a huge thank you for the bracelets that Joe and Megan received at the beginning of the week. Joe hasn’t taken his off yet and even hides it under his school jumper. Megan has loved receiving the postcards that lovely people have sent her from all over the country/world this month too. A huge thank you to ‘Dottie the Dalmatian’ for all the letters Megan has received. She loves hearing about all her adventures and finding what all the other ‘litter mates’ have been up to. A big thank you to Kim Lawrence and family for the lovely September themes box. Megan especially loved the pink butterfly lights, she has had them hung from her curtain pole and are switched on every night when she goes to bed.
Life has been pretty awful lately and it is amazing everything Post Pals do, they certainly are all part of our extended family.
Update 1st September 2010
Firstly I want to say a huge thank you to everyone that has sent posty throughout the summer.
At the end of July we went to Blackpool for a week and stayed at Haven. It was lovely to finally meet up with Linza Corp who runs Families against Neuroblastoma (FAN). We were lucky enough to meet up at Blackpool pleasure beach and also meet some amazing families. We had a lovely 5 days in Blackpool and Joe and Megan went donkey riding and on lots of rides. The weather wasn’t that great but we did manage to have a day in St Annes and found a gorgeous beach where Megan was able to build some sand castles and Joe was able to fly his kite. We were also able to get a few days camping in Bournemouth at the end of August. Megan and I hated every minute as it continuously rained, but Mick and Joe loved it.
Megan was due to go to GOSH for surgery on the 17th August. Because we have had lots of problems with her being wet in between catheters, the doctors wanted to check her bladder pressures. She was due to have SP lines in that would be connected to a machine and this would indicate whether there was any damage to her bladder following spinal surgery. Anyway, long story cut short, it was cancelled due to UTI, as Megan tested for E-Coli in her urine. I was furious as this was diagnosed the week before by GOSH and GOSH prescribed the antibiotics. I had asked if this would interfere with surgery and was told NO. So we spent the night before in patient hotel, got to ward at silly o’clock to be sent home as we were about to go to theatre. We have waited 6 months for this operation and we have rescheduled for October 5th as told them I was not willing to wait. Whilst we were talking to the doctors they started telling us about a couple of operations that may be an option for Megan. We will discuss these at length at our next outpatient’s appointment. They would like us to consider the ‘Mitrofonoff’ (surgery for bladder so Megan can catheterise through her tummy) and also the ‘ACE’ for her bowel. I know very little about either procedures and I will not look on the net as I know both surgeries are major and both have risks.
Megan will be seeing the Endocronoligists next Tuesday about early puberty. She is having a bone age scan done beforehand and hopefully we will then have some answers. Her body hair has grown even more over the summer and she insisted we buy her a bra. It’s so sad having to try and explain to a 7 year old why all these changes are happening to her body. She really is too young to understand but we are trying to be as honest as possible with her. If all the tests come back positive next week then we need to discuss how to stop early puberty before it affects her growth. We will also be seeing the Neurodisability team next week at GOSH. Megan is scheduled to have 3 Botox injections in each leg into different muscles to help with spasms next Tuesday. This will hopefully help with her tightness and maybe relax her a bit. We’re slightly concerned as they are being done without anaesthetic.
On November 1st we are being admitted to Stanmore hospital for intense Rehab. The spinal injury team have said that Megan must start being braced as the surgery/rod alone is not controlling the scoliosis. So we will be trying different braces, intense physio, trying new equipment and basically trying to make Megan more independent. It will be a very very tough week and I’m sure emotions will be running very high, but I do feel Megan will get a lot from it.
On the whole we have had a mad summer with so many appointments and things going on. Yesterday was Joe’s 10th birthday, I really can’t believe how time flies, thank you Wendy for his card. We had a little party at home with family and it was lovely to have good weather so we could get the bbq out. Joe and Megan are both back at school next Monday and we’re hoping for some good weeks now. It’s been a very tough few weeks with Megan and would be great for some time out. She’s really struggling with things at the minute, it is so hard.
Thank you for your continued support, it really means so much.
Thank you to Wendy for the handmade cards you continue to send Joe and Megan. They really look forward to receiving them and Joe even recognises your handwriting on the envelope now! Megan loved receiving the letter and photos from the Dalmatians. She is soooooo looking forward to receiving her very own puppy to look after. Joe and Megan still love hearing what Percy the poodle has been getting up to as well. A huge thank you for the box Megan received with the summer theme, she took this on holiday with us.
Update 4th July 2010
Sorry I missed last months update, we have had so much on. Megan has recently seen the long term oncology consultant. This is the first time she has been seen at this clinic. Everyone is fairly concerned as Megan is showing signs of early puberty. She has been referred to an Endocrinologist and will need some tests done. If the tests come back positive then they need to stop it ASAP. We have an appointment for September 7th. We’ve had loads of other follow up appointments but nothing to report really.
Megan has recently started wheelchair dancing and loves it. We also have a whizz kid course coming up so it’s busy. We are also going to Blackpool for a few days at the end of the month so that’s something to look forward to.
Thank you to everyone who continues to send posty to Joe and Megan. Megan has received lots of stickers and sticker books so she’s being kept very busy. Thank you to Ana for the lovely MEGAN name plate, she has put it on her wheelchair wheels. She loved reading about Ana and looking at the picture of Ana in her chair.
Update 1st May 2010
Wow it seems i missed last months update, SORRY folks. Megan had a great birthday and thank you for the lovely cards she received. She had a party with her friends in a hall with a disco etc. We ended up with about 50 kids and it was mad but Megan loved it although she spent over an hour crying about her wobbly tooth. Eventually it came out and she made £8.00!
Things have been a bit hit and miss lately. Since Megan’s recent spinal surgery she has been having problems with her bladder. It seems the surgery may have caused more damage to her bladder. She needs to have some tests done but they need doing under GA and there is a fairly long wait. She is very upset about all of this and we’re getting all the WHY questions. She’s feeling very angry and upset she had cancer, angry about being unable to do certain things. It’s heartbreaking to hear all this but I’m sure things will improve. She’s also been seen by a new specialist at GOSH about the spasms in her legs. They feel Megan will benefit from having some more Botox. She is on the waiting list which is about 4-6 months.
We’ve also just found out that Megan’s school is going to be fully adapted. Completion date will be Easter 2011 but will include a lift, hygiene room, ramps (basically everything that will make the school completely accessible). It’s a huge project as they’re also building new classrooms, ICT suite, playground, toilets. I finally feel that after 3 years of fighting the LEA, I’m finally getting somewhere.
Megan’s older sister Jenny got married at the beginning of April and she was very excited about being a bridesmaid. Joe was a pageboy and looked very handsome. We have also found out that Jenny is pregnant and due around November so they will be an uncle and auntie. We’re all really excited and feel we have something to look forward to.
Megan and Joe were so excited to see themselves on the TV on the Russell Howard Good News show. We have had so many people saying “we saw you on TV last night”. They have both had so much posty and mega smiles. Thank you to each and every one of you; if I forget anyone in the following list I’m really sorry. Right, here goes, David and Sandra, Karen Thatcher, Nicola, Charlie and Tilly the dog, Leah, Grannie Ruth, Elizabeth from New Jersey USA, Catherine Hill, David, Jen Steve and Lily, Wendy, Izzy, Charlotte, Yenti, Carole, Tanya, Anna and Jenny, Jacqueline, Phoebe, Claire Hastings, Dexter and his mummy, Liz. Also a big thank you to Emily and Fiona for the lovely box of girlie bits, Megan loves the hello kitty lip gloss and jewellery. Megan also received a huge box of bits from a lovely lady called Karen. Karen sent Megan a lovely card telling her all about herself and also that she is a policewoman. Megan loved the flashing bunny ears, wings, tiara and all the other bits and pieces. Again, if I have forgotten anyone I am truly sorry. You are all amazing people and have certainly created lots of smiles in my house this month. It has been a very tough month for Megan and from the bottom of our hearts, thank you.
Update 4th March 2010
We have had a very busy month including a few routine appointments with wheelchairs and local paediatrician. We’re still waiting for some hormone results to come through but it should be through any day now. Half term was fairly quiet as the weather was so lousy as usual.
On 23rd February, Megan was readmitted to GOSH for her spinal surgery. We were very lucky as she was first on the list so we didn’t have to wait around too much. She had her pre-med as usual and was very giggly. We saw a different anaesthetist who was new to GOSH and he was really lovely and let Megan be in complete control and make decisions about how she went to sleep etc. Surgery went well and she was sitting up in bed by the afternoon eating everything in site. She has never been like this before and it was lovely to see. I think we spoke to soon though as the next day was awful, she was very sick all day and the wound had been weeping over night. All in all it was a horrible day for us all and it just happened to be my birthday as well!
Megan has been recovering very well at home and had her dressings changed yesterday. All looks nice and dry and she was able to have a bath last night. I think she may have had the start of an infection as there was hard green puss under the steri- strips. Anyway, she’s doing well and returned to school this morning. We have to keep an eye on the wound as it was bleeding overnight.
On a brighter note, Megan is looking forward to her 7th birthday next Friday. We have a party booked for the 13th and she will be having a disco and face painter. We’re expecting about 50 kids so I’m sure it will be eventful.
Thank you for the continued support you all show to us. It really helps and shows how much people care. A huge thank you to Sara, Kelvin and Megs for the Chelsea stuff and DVD you sent through for Joe. Also a huge thank you for the Minnie Mouse hidden inside the red love heart – she loves it.
Update 25th February 2010
Megan had her spinal surgery on Tuesday and all went fairly well. She was in a lot of pain when she woke but it seemed to be managed with Morphine. Mick stayed with her Tuesday night as it was my birthday Wednesday. On Wednesday morning the wound had been weeping and she started being sick. She was sick a few times throughout the day and it looked doubtful we would get out. Anyway, we got out about 5pm last night. She had a fairly settled night but the wound seems to be weeping a little this morning. She’s slept a lot today and is a bit hot and looks very pale. We’re going to monitor how she goes and get the nurses to check the wound if it weeps again. We’re really hoping it doesn’t otherwise she’ll probably be back to hospital for IV antibiotics. She normally recovers really quickly but this time, bless, her she’s really struggling.
Update 31st January 2010
We were prepared for a busy month with appointments but unfortunately had to cancel them due to the snow. We managed to see the local paediatrician for a general catch up though. Megan had developed some body hair unusual for a little girl of her age. The paediatrician has taken a urine sample and they’re going to check some hormone levels. We should get the results in about 3 weeks. We’re also waiting for another appointment to see the movement specialist at GOSH. Megan’s leg spasticity has worsened and is making things very difficult and uncomfortable for her. She gets upset and wants to know why she isn’t ‘normal’. We try and explain things in a way she understands but how do you tell a 6 year old that cancer has done this to her body. We don’t understand why this happened to her, so how will she.
Megan will be going in for more spinal surgery on February 23rd. She is sitting very lopsided again and is uncomfortable so let’s hope they don’t cancel it again. Hopefully she will only be off school for a week this time. She is getting very upset about all the operations she has to have. She is questioning everything now and we are finding it really hard.
On a brighter note, Megan will be having her 7th birthday on March 12th. We have organised a party for her on the 13th – she will have a disco, face painter and loads of games. She wants to invite friends from school, family, and all her wheelchair friends. I think she has reached about 50 on her list now. This will be the first proper party she has ever had as she always seems to be recovering from surgery around her birthday.
Thank you for the continued support we receive from Post Pals. Joe and Megan save all their cards/letters they receive in special boxes and we all sit and look at them. Megan is also enjoying sending parcels to other Pals.
A huge thank you for the handmade cards that Wendy sends to Joe and Megan. Thank you to Gemma for the bits she sent and also for the packets that Post Pals sent through. Joe and Megan loved the Thornton’s chocolates.
Update 3rd January 2010
December has been a very busy month for us all. On 5th December Mick and I flew out to Lanzarote for a week. This was our first ever holiday alone in the 16 years of being together. We had an amazing time and Joe and Megan stayed with my mum and sister. Joe and Megan were so pleased to receive posty while they were there.
On December 17th we were lucky enough to go to the GOSH Christmas party. We have never been before and had a ball. They met lots of characters, ate loads of chocolate/sweets and played some games. They were also lucky enough to be given a Meerkat in their goody bag to take home. These were donated by Harrods and are exclusively made in honour of compare the Meerkat.
We have had an amazing Christmas which we spent at my mums. Megan got a pink stereo, Hannah Montana things, make up, handbag, mobile phone (not from me, I think she’s too young), clothes, games, littlest pet shop stuff and loads more. Joe got an IPod, star wars monopoly, cd’s, dvd’s, clothes, games, and loads more. We bought them a Nintendo Wii between them which they play nicely together. Ulterior motive, I would like the Wii fit to try and shift some more weight, so we will all benefit from it.
We have a lot of appointments coming up in January for Megan. Wheelchair services have supplied a new chair which seems to be going fairly well. We do however have to keep going back for things to be done. We’re seeing the local paediatrician, urodynamics, physio (we have a new one which isn’t going too well; we’ve only seen her twice in about 2-3 months). We are seeing the movement clinic at GOSH in January; this will be our first appointment with them so hopefully it will help. They deal with spasms, medication for spasticity, exercises etc. I feel we should have been referred ages ago as her spasms are really bad now. She is also being referred to a hormone specialist. She has developed excess body hair that is not normally found on a girl of her age. It could be early onset of puberty so we need to check things out now. Apparently it can be quite normal with spinal patients and although it causes no problems now, it will in later life. It’s just another hurdle for Megan to cross.
I want to say a huge thank you to all of Joe and Megan’s elves, reindeers and everyone that sent gifts, cards and letters. I won’t name you all personally otherwise we will be here forever and I really don’t want to miss anyone out by mistake. Each and every one of you makes a huge difference to our lives. I hope you all had a fantastic Christmas and I can’t wait until next year to do it all again.
Again, a massive thank you for all the cards that Megan, Joe, Mick and I, have received over the whole of December. Joe and Megan loved receiving their letters from the reindeers. In the first week before Christmas they were getting them daily and really enjoyed hearing what all the reindeer had been getting up to. A massive thanks to all of Joe and Megan’s Elves too. Megan received some arty crafty things, DS game, princess dressing up things, make up, hair bands, cd’s, tatty teddy, amongst some of them. Joe was so excited to receive the Guinness Book of Records and the JLS cd from Liz and Kate (one of his elves). We now know all the moves and words to the entire JLS album.
Update 2nd December 2009
Sorry for missing last months update. Megan is doing ok, we’ve had some appointments with the paediatrician and now we’re just waiting for a referral to a specialist that deals with spasticity. The appointment should be some time in January. We saw the spinal team and Megan had some more x-rays done, her scoliosis is still doing fairly well with the rods. She has grown so more surgery is scheduled for February 23rd, which is a day before my birthday, so I will wake up in a plastic sweaty chair on my birthday!
Joe and Megan are really excited that they will be going to stay with their Nan and Aunty for a week. Mick and I are having a week in Lanzarote, so they will be doing the school run. We haven’t had a holiday on our own in the 16 years we have been together so are looking forward to it. Because of Megan’s needs, my mum and sister are the only ones that ever offer to have her. They have their school nativity next week so we’re hearing all the songs 10 times over now. Megan’s also learning Spanish at school so we’re getting jingle bells in Spanish, morning, noon, and night.
We have also been called by the doctors for Megan to have her flu jab. I’m a little unsure if I want her to have it but don’t think I could forgive myself if she didn’t have it then got ill. This is booked for 15th December. I’m sure she won’t be very happy but we will be going to GOSH for their Christmas party on 17th December so hopefully this will cheer her up.
I want to say a huge thank you for cards and letters that Joe and Megan have received. We have also started getting letters/cards from Santa and the reindeer. Joe and Megan love hearing what Santa and his reindeer are doing in the build up to Christmas, they are so excited so thank you to all you elves and reindeer out there.
I hope everyone has a great Christmas and wish everyone great health for 2010. To everyone that send letters/cards/gifts to all the Pals, you make a huge difference to these kids and their families.
Update 8th October 2009
Megan has had a fairly good month, although has been in a lot of discomfort due to an ill fitting wheelchair. I’ve spent the last 6 months chasing wheelchair services. Anyway, to cut a very very very long story short, we finally have a new chair. We picked it up on Monday and Megan loves it. She has customised it with tatty teddy stickers and spokey dokeys on the wheels. Hopefully she will be a lot more active now she has a super duper lightweight chair.
We have had some adaptations done to the bathroom so hopefully Megan can begin to catheterise herself. She is still very upset about having to wear nappies as she is nearly 7 so it is a huge thing for her. We’re still getting all the questions about her disability and try to answer as honestly as possible. I’m sure it will get a lot harder as she gets older.
We’re still waiting for an appointment at Great Ormond Street with regards to her spasms, they seem to be getting worse and her hips are very tight now. We also have a new physio who doesn’t know Megan or her strengths/weaknesses so i feel like I’m banging my head against a brick wall.
Megan’s really pleased now she is back at school and in Year 3. She’s working really hard but enjoying it. On the other hand we have huge issues. Megan’s carer at school is amazing, they have a great bond and work really well together; however that’s where it ends. When Megan first started school everyone was very accommodating but now we seem to be a nuisance. She has to use a different entrance to all her friends as there is still no lift. We have been told that hopefully this should be done next year (we’ll see) by this point she will only have 3 years left at the school.
Thank you to everyone who continues to send posty.
Update 8th September 2009
We have had a really hectic summer and are now able to have a bit of peace now the children are back at school.
Megan has been having weekly hydrotherapy with her physio and is really gaining confidence now. We are going to aim to take her swimming once a week to keep this up.
We saw a Neurologist at GOSH to monitor the spasms she has in her legs. She didn’t receive the Botox when she had her spinal surgery and it has made a huge difference. Her legs are tight in the hips and they keep jumping about. She’s a little upset by this as it affects her balance etc. Anyway, she has been referred to another consultant that deals purely with spasticity so hopefully we won’t have to wait too long for the appointment.
We’ve also learnt that the damage in her spine (caused by the tumour) is actually from T7-T12, not T8-T10 as we previously thought. It has only taken 6 years to be told after constant asking. She definitely has no feeling from her belly button down and will never walk. We always knew this but the harsh reality has set in after it being confirmed.
We’re still waiting to hear about Megan’s new wheelchair. Funnily enough they always say they will call you with an update and we never hear another thing. She’s so big in her old chair now and it is holding her back and she’s unable to do things she had learnt previously. It is always a constant battle.
On the whole we had a great summer. My sister got Megan a bunny for an early Christmas present. First she was called Martha but now it’s Rose. She’s very pretty with tall ears. Unfortunately, Megan managed to let Joe’s boy bunny get in her cage so now we have to wait and see if one new bunny will in fact be a lot more, so watch this space!
Thank you to everyone who continues to support us and send Joe and Megan posty. It really does make a huge difference and we’re so happy to be able to share our lives with you. Thank you to Jane for the lovely postcards from Lanzarote, Joe and Megan loved reading about your holiday. Megan loved the pink sheep that Sarah sent her so a huge thank you. Megan’s favourite colour is pink and now he goes to bed with her every night. Thank you to Post Pals for the Egyptian set you sent Joe, he has been learning about Egypt at school and is really looking forward to doing it.
Update 4th August 2009
Sorry for not updating last month, we found out that Megan was going in for spinal surgery and only had a week to sort ourselves out.
Surgery went very well and we were home within 48 hours. We had a different surgeon this time and I have to admit I was a bit wary. However, he was amazing, his bedside manner was great. We have never had a surgeon come and see us after surgery and explain things. We will be going back in 6 months for a review and surgery will probably 9 months time. She was back at school after 2 weeks and has healed well.
Joe and Megan have broken up for the summer now. We have just come back from New Milton with the Thomas Ball charity. We stayed at their lodge and had an amazing time. We didn’t have the best weather but we were really busy. We managed one day on the beach in Swanage which was lovely.
Megan has been referred to the Neurologist at GOSH and we have an appointment in September. There is no-one in Megan’s care deciding when Megan should have Botox in her legs. She hasn’t managed to have it this time and her legs are very stiff and she’s having lots of spasms and the Botox normally helps. We have various other appointments during the next 2 months, wheelchair services is our biggest thing at the moment. Megan is definitely too big for her wheelchair now and were having problems trying to get a new one. Wheelchair services are teaming up with Whizz Kidz and are hoping to do split funding to get Megan the best chair available. I’m so pleased Whizz Kidz will be involved but everything takes so long. Megan has lost a lot of confidence in her chair as she doesn’t feel safe now. We have an appointment on August 11th to try 3 different chairs to see which is best for her; it is just how long they take to order and supply. Next week Megan will be doing a weeks wheelchair skills course run by Whizz Kidz. She is very excited about this as she did one last year and learnt lots of new things.
Well, there are 5 weeks left until Megan starts in Yr 2 and Joe goes into Yr 5. Joe will be celebrating his 9th birthday on August 31st. I can’t believe they grow so much.
Thank you for all the cards, gifts and letters that Megan and Joe have received this month. Thank you to the lady that sent Megan the fairy holder as she loves it. Megan’s Post Pals box is now bulging and we have had to get another one for all her letters etc. I can’t wait until she is older and we can sit together and read them again.
Post Pals you do an amazing job, I can’t imagine not having you in our lives, especially when times are really tough. Thank you.
Update 28th June 2009
Megan is going in for more spinal surgery on June 30th. We have been given very little notice this time which is a pain when trying to organise childcare for Joe.
I hope she will be well enough for the Post Pals party.
Update 4th June 2009
Megan has had a fairly unsettled month. We’ve had a few hospital appointments with the local paediatrician and they have all gone ok. Megan’s legs have started to spasm a lot more in recent weeks. We spoke to the doctor about her having some more botox when she has her next spinal surgery in July. We are doing lots of excercises and stretches but the tightness is getting worse. We have had to have an emergency appointment with wheelchair services as Megan is now far too big for her wheelchair. She fell out of the chair twice in a week and hurt her arm. We have had to borrow a wheelchair until we go for an assesment for a new one on June 10th. I hate the borrowed chair but hopefully it’s only short term.
We’ve had a lousy half term. Joe and Megan broke up on the Friday and by the Sunday we were in A+E with Megan. She was very unwell and had a very high temperature. She appeared to have all the signs of scarlet fever, she had this when she was 3. Anyway, long story short, Megan had picked up scarlet fever for a second time. Our week was spent with the tv and antibiotics. We had a day at Littlehampton after 5 days which we all enjoyed.
Megan’s nan has been in and out of hospital for the last 11 weeks with kidney stones, diverticular disease and eventually caught C-DIFF. Anyway, things have been tough but hopefully she is now on the road to recovery. It has been a long 11 weeks.
Thank you for all the lovely letters/cards that Joe and Megan continue to receive, i really wish you could see their faces light up when the postman comes. A huge thank you for the bubbles that Megan received. She loves bubbles and had great fun with them.
Update 1st May 2009
Sorry for not doing an update last month. Megan’s Nanny is very poorly in hospital and we just haven’t had time. She’s still in hospital after nearly 7 weeks, but hopefully will improve soon.
Megan has had a few good weeks, enjoying the sun and has loved being able to go outside. She’s working hard at school and has so many friends who seem to look out for her. Wheelchair services have given her a new cushion for the chair as her pelvis is not in line with her trunk. This has been an ongoing problem that has gradually got worse. The cushion has helped a little but also caused a few problems as her chair is no longer able to fit under the desk at school so she is straining her neck. No one realised this was happening until she was having pain in her neck every day and needed to have pain relief. The school has ordered a height adjustable table so hopefully this should help. To be honest i think she needs a new wheelchair; she’s had the same size chair since she was 2 and is beginning to look a bit big for it. We have an appointment with the wheelchair services next week so I’m going to push for something new.
We have an appointment coming up at Stanmore spinal unit this month for review. The OT’s and Physios are fantastic there and are so helpful with regards to equipment, exercises etc. Megan also has an appointment with her Oncologist at the beginning of June. She will have an Echo of her heart first and then get the results from the Oncologist. One of the chemos that she was on can cause heart problems but hopefully these should all be fine.
Megan has started playing Boccia after school on a Monday. She really enjoys it and it gives her a chance to be with other children in wheelchairs.
We still have issues with Megan wanting to wear knickers and not nappies and we deal with this on a daily basis and are hoping she feels more comfortable with the situation soon. She is becoming such a little madam and fiercely independent, which we encourage, but again it brings out more issues with things she can’t do. I’m sure things will improve but no doubt it will get worse before it gets better.
Joe is feeling a little more positive about things; we’ve really tried to make more time for him without Megan. It’s tough and not always possible but again we will get there.
Thank you to everyone that has sent posty to Joe and Megan, it really does go a long way to create two smiling faces. Even the postman knows all about Post Pals now! Huge thank you to Percy the poodle for happy post as Joe and Megan love hearing what antics he’s been up to. We’re also in the middle of growing our eggs that we received about a week ago, thank you Post Pals. Joe and Megan are having a competition to see whose the best is. We will send a photo when there all done. Megan loved receiving the Beatrix Potter cards too and she’s in the process of writing some notes.
I also want to add a huge thank you to Viks and her parents for coming to see us on Megan’s birthday. Megan was a little down and we were having some tough times. Viks arrived at the house with some balloons for Joe and Megan and a Nintendo DS game for Megan. It was so lovely to see her and her parents and it really meant so much to us. Thank you so much Viks.
Update 9th March 2009
Well what a month. Megan is pretty much recovered from her spinal surgery now. On the whole it’s been a quiet month regarding appointments for a change.
We have a few issues at the moment with both Joe and Megan. Megan is very upset she can’t walk and doesn’t understand. She is also fed up of going in for surgery every 6 months now. The biggest upset at the moment is the fact she’s still wearing nappies. She can’t understand why her friends are wearing pretty knickers and she is still wearing nappies. We have bought her some pretty knickers to go over the nappy but that’s not good enough. I’m going to phone Stanmore and ask the psychologist to see her as they deal with this on a daily basis. Joe is also sad that Megan can’t walk and run and do the things he can. He feels he is missing out on a lot because Megan can’t do certain things. We try so hard for him not to feel left out but it’s so difficult to find someone to come and sit with Megan while we take Joe out. We get 2 hours a week from social services but to be honest it’s sometimes more of a hindrance as 2 hours isn’t really long enough to do anything. So we’re having issues with both Joe and Megan but hopefully they will be sorted out soon.
On the plus side, Megan is celebrating her 6th birthday on 12th March. This is a huge milestone and something we never thought we would see. I didn’t for one minute think we would be sitting celebrating her 6th birthday with her by our sides. And on the plus side again, Megan has been off Chemo for 5 years now. We have a lot to celebrate this month.
Thank you again to all who continue to send happy post – it does just that. A huge thank you to Julia from Austria for the packet you sent Megan. She loves the stickers. Also a very big thank you to Kim for the bits she sent through. Thank you to Post Pals for their continued support. Megan is cancer free for now but still has all her other problems as a result of Neuroblastoma, so thank you to everyone at Post Pals for making life happier for Joe and Megan.
Update 1st February 2009
We’ve had a fairly quite month up until last week. Megan had spinal surgery to lengthen her spinal rods last Tuesday. We went for pre-op on the Monday and Megan was in good spirits, until they said they wanted to do blood tests. Anyway, long story short, why did they want bloods as they never have before? We spoke to the doctor who agreed it would be best for Megan’s bloods to be done while she was asleep in theatre. Tuesday morning we arrived at Dinosour ward and basically just had to wait. She was second on the list and didn’t actually go down until about 11am. Once again she amazed me at how calm she was. She had her pre-med (which she took herself) then laid on the bed while we waited for it to take effect. By the time the porter arrived she was being very silly and waving at everyone like she was the queen. She didn’t cry at all when she was having her anaesthetic and drifted off to sleep very calm.
Surgery lasted about 2 1/2 hours and she definitely wasn’t calm when we got to recovery. The nurses gave her some Morphine on top of everything else she had and after a while she was comfortable and we went back to the ward. She slept on and off until about 6.30 the following morning, so had a good rest. Everything seemed to have gone well and we were allowed home later that day. Her pain has been a lot worse this time but today she seems to be a lot better. We have the nurses coming on Monday to remove the dressing and check the wound, something that Megan will scream at. The doctors have told us that she must have 2 weeks off school to fully recover, so she’ll back for a week before its half term.
So that’s it surgery wise for 6 months. We have various appointments over the next few weeks though, so a busy time coming up.
Thank you for the cards/letters that Megan has received. She really enjoyed getting the letter from Percy the Poodle and hearing all about his antics. A huge thank you to the lady that sent Joe and Megan the glo sticks too as they both had a lot of fun with these during the night.
Update 22nd January 2009
Megan is going into GOSH on Monday 26th January for her spinal operation. Hopefully we will only be in for a few days, depending on how things go. She’s aware she’s going in but is fairly anxious this time. It seems to get harder as she gets older, maybe she’s a lot more knowing.
Joe and Megan were sooooooooooo excited to see themselves on telly last week, Megan got a bit embarrassed. A lot of the mums at the school have asked about Post Pals so hopefully some more post will be sent.
Update 4th January 2009
Joe and Megan had a fantastic Christmas and were spoilt rotten. Santa bought Joe an electric guitar and Megan a keyboard, so our house was very noisy on Christmas day. We stayed at home and had my mum and sister and Mick’s mum over for dinner. Megan got a lovely Disney princess night light which has been used every day since she received it. She has now decided she wants a Disney princess bedroom, so I’m going to get pink paint tomorrow. Joe has also decided that he would like a Chelsea FC bedroom so we’re going to be very busy.
Unfortunately Megan wasn’t well before Christmas; she had this fluey/sicky bug that was going around. After 2 weeks i took her to the GP who prescribed antibiotics and after a week or so she was a lot better. Joe has had a terrible cough so we may have to take him to the doctors next week.
Megan is due for more spinal surgery later this month; I’m still waiting for a date. She is sitting very twisted again and is experiencing some pain to her back. I’m going to phone Great Ormond Street again tomorrow and try to find out when we’re in. I don’t think these doctors realise we have our lives to lead as well as be at their beck and call. I need to sort out childcare for Joe when Megan’s admitted.
Well, tomorrow it’s back to school, yay! Megan really hates being away from school and is so excited to be going back. Because she was ill before Christmas, she missed the last week. We sent her in on the last day just so she could see her friends and her carer. It’s been 3 years running that she has missed all the Christmas celebrations at school, so I’m keeping my fingers crossed for this year!
We have a few appointments coming up with the local paediatrician, wheelchair services, and Megan’s counsellor, so i will let you know how we get on in my next update.
A huge thank you to Joe and Megan’s Christmas elves. They received some lovely presents, Joe got a Scooby Doo game, Dr Who tardis kit, Harry Potter goodies, sweets, and Dr Who stuff. Megan got loads of Disney princess stuff, night light, make up, sweets, crafty sets. The list goes on and on and a heartfelt thank you to everyone that sent post. Also, a huge thank you to Percy the Poodle that sent a parcel for each of them. I can’t remember everyone’s names personally, so I’m saying thank you to everyone in case i forget anyone.
We hope you all had a good Christmas and happy New Year to you all.
Update 10th November 2008
Megan has had a busy month. Half term week was spent on a wheelchair skills course run through Wizz kids. Megan enjoyed the week and it really taught her a lot as well as me. She has great skills and is now practising her back wheel balance. We need to aim for her to balance for 1 minute and then get up to 5 minutes and then do it with one hand.
Megan is being admitted to Stanmore hospital soon for some intense physio and to possibly try a different type of back brace. I’m not sure how Megan will cope but we are willing to try anything. She is due for more spinal surgery in January so we have a bit of a rest.
Joe and Megan are really looking forward to Christmas and Santa has a huge list. Joe would like an electric guitar and Megan a keyboard, so it’ll be a noisy house if Santa obliges! We’re going to see Santa on December 13th and they are both so excited (so am i but wouldn’t admit it to the kids)!
A huge thank you to everyone that has sent Joe and Megan posty, they still wait for the postman everyday with a huge smile. Also a massive thank you to Hayley Gardner for the wonderful gifts she sent to Joe and Megan last week. Hayley is a relative of Samantha and Louis Hughes, she said she knew how much it meant to them to receive posty and wanted to send gifts to some children battling Neuroblastoma. It really means a lot that they are still wanting to make kids smile after there loss, so thank you.
Update 13th September 2008
Megan is recovering well from her surgery in July. We have a bit of concern about the stitch at the top of the spine though. It doesn’t seem to be dissolving so we need to keep tabs that it doesn’t turn nasty. It’s beginning to look a little red so here we go again.
Megan is now doing intense physio as her hips are quite tight. She had botox in her hips and this seems to be keeping things stable. We will see the spinal team at Stanmore on October 3rd to discuss the next steps. We also see the uro-dynamics team on the 6th October to do some bladder investigations, and we have an appointment with the eye specialist in November, so we have a very busy few months.
Joe and Megan are now back at school and seem to be enjoying their new teachers. Now Joe is in year 4 he has a lot more work to complete – much to his disgust.
Thank you to everyone that sent Joe cards on his birthday and Percy the poodle for his lovely present. I also want to say a huge thank you to everyone that continues to send posty to Joe and Megan. Many of you have been through a lot with us and you’re all still here making Joe and Megan’s day a little more special.
Update 23rd July 2008
Megan has had a very busy month. School is going really well and her report shows she is in the top of her class. Her biggest strength is Maths and this must come from dad as it is definitely not from me!
Joe and Megan broke up a week early for the summer holidays as we went on holiday. We went to The Thomas Ball lodge in New Milton. Thomas Ball lost his battle with Neuroblastoma when he was 14 and the charity was set up in his name. I think it was probably the best holiday we have had. This is our 3rd summer we have been there and will be going there next year. We have got to know the entertainment team who are fantastic. They treat Megan as an equal and include her in everything. Sammy seahorse is the mascot and Joe and Megan enjoyed singing and dancing with him every night.
Megan was due to go in for more spinal surgery on 25th July but unfortunately this was cancelled by email (i was livid they cancelled by email and not a call). Anyway, she will now be going in on 28th July for surgery in the afternoon. We are all a little anxious as usual about surgery. We have explained she is having another op and she seems ok. Her true colours will show when we are at the hospital. As well as having the rods lengthened, the surgeon is going to inject some botox into her hip muscles. Megan has been having lots of spasms which are beginning to be uncomfortable. Originally they were going to snip the tendons but we’re going to try the botox first. She has a new piece of equipment which was supplied by Georgies fund. It’s a ‚Äòwheelabout’ which means she can be strapped in a standing position but still be able to wheel herself about. This will be very beneficial for her muscle tone in her legs and give her a lot more independence. I can’t thank Georgies fund enough for their generosity in this wonderful gift.
Joe will be celebrating his 8th birthday next month. He’s very into Star Wars now and wants to collect the Lego Star Wars kits. He’s given me a huge list for his birthday. He seems to have grown up so quickly. I’m sure that due to Megan’s disability and illness he has had to grow up quickly, but i have to say he is not resentful at all and very overprotective of Megan.
We were lucky enough to attend the Post Pals party and it was great to meet everyone. It was also great to meet some of the other pals and their families. Joe and Megan thoroughly enjoyed themselves and came home with loads of raffle prizes. I just want to say a huge thank you to Post Pals for everything you do. Joe and Megan run to the door everyday looking for their post, and it’s strictly off limits to me. You spend so much of your time doing things for the pals and their families and it’s wonderful. You are a huge part of all our lives and we thank you for everything.
I will update as soon as Megan has had her surgery. Please think of her as she goes through this again.
Megan has received lots of letters this month. Most of them are from a primary school in Brighton and a primary school in Somerset. Megan has loved receiving these letters and hearing about all the children that have been writing to her. Thank you to you all.
Update 7th June 2008
Megan had her MRI at GOH last Tuesday and we went for the results Thursday 5th June. Megan’s oncologist is very happy with Megan and how she is doing. Megan has been off treatment for just over 4 years and the scan shows that the tumour has not grown or changed shape. We should have been moved to long term follow up but the oncologist isn’t ready to let Megan go yet, she definitely has a soft spot for her. So we will see her next time and then be moved on. Megan has to have some kidney scans and an echo done, but remains fairly well with regards to the Neuroblastoma.
Spinal rods are and will always be an ongoing issue. We are back for more surgery to lengthen the rods on July 25th and she may also need to have an operation to cut the tendons in her hips. Her hips are so tight and we are doing lots of exercises to help this but they don’t seem to be working. We’re praying that if she needs this op then it can be done at the same time as the spinal rods are dealt with. The next piece of good news is Megan has some new equipment which should help the problem with the hips. Georgie’s fund have very kindly bought her a wheelabout, which is a sort of standing frame with big wheels so she can move about in a standing position. I can never thank Tania and the girls at Georgie’s fund for their generosity in this wonderful gift. Megan has taken to it like a duck to water and enjoys going in it. Life with Megan’s disability seems to get more difficult as she gets older but hopefully this will help a little.
She’s doing great at school although we still have issues with adaptations, hopefully this will nearly be sorted when we go back in September when she will be in year 1.
I’d like to say thank you to a little girl called Ellie who lives in Suffolk. Some time ago Megan received a lovely parcel of bits and a lovely letter from Ellie and her family. Megan drew a lovely thank you picture for Ellie and her little sister Beth, which i was meant to post. Unfortunately i lost the address and my computer crashed and i lost all my email addresses so couldn’t mail to ask for there address. If you see this please email me through the link at the top of Megan’s page so i can forward Megan’s picture.
Update 16th April 2008
Megan has had a very busy month. She celebrated her 5th birthday on March 12th, a day we never thought we would see. We had a party for her on the Sunday with family. We got her a pink fairy castle cake which she loved. As usual she was spoilt rotten and couldn’t have asked for more. She received some lovely presents via post pals and loads of stickers. Megan can never have too many stickers; the wheels on her wheelchair are full of princess ones.
We have had appointments with wheelchair services to try and find some suitable support for her chair that doesn’t restrict her movement too much. On Friday we will be going back to have a cast done of her back and make some sort of plastic support. We have an appointment at Stanmore Royal National Orthopaedic Hospital to see the spinal injuries consultant. We go there every 6 months and they’re excellent. We have also seen a rep about getting Megan a wheelabout, which is a sort of standing up wheelchair that she can self propel. We’ve tried 2 different ones and she took to it straight away. This would give her more independence and enable her to access so much more. We’re hoping to get some kind of charity funding, i won’t say too much in case it doesn’t work out, but will update you when i know more.
We’ve had a busy month with physio sessions etc as usual. Megan has her next MRI and appointment with the oncologist in May, so fingers crossed the tumour hasn’t changes size or shape.
A big thank you to Maria Carney for the lovely things sent for Megan’s birthday. Also a huge thank you to Sally, Owen, Beth and Ellie. They sent Megan some lovely bits for her birthday and a letter from Ellie. Ellie is the same age as Megan and they sent some pictures too. Megan is going to send Ellie a lovely picture to say thank you. The picture of Ellie and her little sister Beth is in Megan’s photo album. This really put a smile on Megan’s face.
I can’t praise Post Pals enough. Since Megan’s problems all began as a result of Neuroblastoma, post pals have been great. They have supported us through lots of hospital admissions and operations. Joe always feels a little left out as Megan’s needs always have to be a priority. When posty arrives for him his smile is priceless. He spends a lot of time away from home and we miss him dreadfully. He loves receiving cards and letters etc when Megan’s having treatment or surgery. Thank you for making this possible.
Update 4th March 2008
Megan has had a fairly good month health wise. The infection in her back is healing well although there is still one patch that’s a bit puffy. The spasms in Megan’s legs are quite bad now; i need to make an appointment to review her medication. We have to strap her feet down in the chair so that one of them doesn’t get trapped in the wheels. She’s been recast for her night splints so hopefully this will help a little. We have an appointment with a rep to show us some new equipment that should help Megan. We are looking at a wheelabout which is a bit like a wheelchair but she would be standing. We will also try a few other things to see which suits her best. We have a date for her next operation – July 25th. Thankfully it’s the school holidays so she won’t miss any school. We are going to New Milton on 12th July so at least she gets a holiday before having MORE surgery.
Megan is doing great at school and has lots of friends. Her carer has been sick for the last 2 days so the school has had to muddle through on their own. We’re still going up to do the catheter, but the teacher goes on the training course next week, so hopefully we won’t need to go for much longer.
Next Wednesday will be Megan’s 5th birthday. I can’t believe where the time goes. Another milestone in her life. Doctors said she wouldn’t be here and look how well she’s doing!
Thanks for posty that is still being sent to Megan and Joe. Megan wheels herself to the door everyday to see if there’s anything for her.
Update 29th January 2008
Megan is doing ok. Following her spinal surgery in December, Megan caught an infection in her wound. She was put on a strong course of antibiotics and now seems fine. We saw the spinal team at GOSH on Friday and they are happy with her progress. She can now start her physio properly again. She has been unable to do so much as she has been unwell but all systems are go now. We have a date for her next lengthening in July. We are away 12th July for a week and then she goes in for surgery July 25th. I’m glad as this means it will be done in the summer holidays so she won’t miss school.
Megan is doing great at school and has loads of friends. It’s tough without all the adaptations but we’ll get there eventually. We go back to GOSH for an MRI in May and to see the oncologist.
Thanks for the posty that you continue to send to Joe and Megan, it really helps to brighten their lives. A big thank you for the lovely drawing books and pens/pencils sent to Megan. She loves them.
Update 3rd January 2008
Megan had a tough month in December. She went in to have her spinal rods lengthened and an x-ray showed the rods had snapped. I phoned the surgeon and said i think the rods have snapped, of course they answered me as if i knew nothing. Anyway they phoned me back and said well spotted, they’ve snapped. She went in to have the old rods removed and a new one put in. The newer rods are a lot more heavy duty and hopefully will be ok for a few years at least. We asked if we’d done anything wrong and they said it just happens sometimes, Megan is just very unlucky. Her recovery was a lot slower this time and she was in a lot of pain. We were told that surgery will be worse as she gets older. Megan is now fed up with all her surgery and hospital appointments. She also wants to know why everything has happened to her. I’m unsure how to answer her, so she is having some counselling at school. Alison is really helping her through things. Unfortunately Megan is always going to be in hospital having procedures done.
I want to wish everyone a happy new year and thank you to everyone that continues to put a smile on Joe and Megan’s face. Post Pals has made such a difference to Joe and Megan’s lives. Everyday after school, the first thing they ask me is “have we got any post today mum?”.
A huge thank you to Joe and Megan’s Christmas elves this year. They were thrilled with their gifts. Megan was in hospital just before Christmas for spinal surgery, so all the cards and gifts really cheered her up at a tough time.
Update 9th December 2007
We went to GOSH on Tuesday to have the pre-op x-rays ready for surgery on Wednesday. Unfortunately, Megan’s x-rays showed that the spinal rod had snapped. Only a 6% chance of this happening, but yes, my girl did it.
Anyway, she has had to have a new rod put in so has been cut from her neck down to bottom. She is in a lot of pain and recovery is very slow this time. I can’t believe this has happened just before Christmas, not sure how long we will be in for. Hopefully out by the end of next week.
A huge thank you for the cards and presents that Megan has received. They really have helped her to smile these past few days, although i have to say she’s probably only managed 1 smile. Also a huge thank you for the parcels that Joe received. He got 2 boxes with Dr who and Power rangers, he loved them. When we’re out of hospital i will forward the photos i have taken.
Thanks again, you really are doing a great job. Not only for the sick kids but their siblings. Joe has felt left out this week and been craving attention so posty really helps him.
Update 30th November 2007
Megan has had a few bad weeks. Her scoliosis has progressed and is causing her pain. We saw the spinal team who did an emergency CT scan as they thought the rod at the top of the spine may have dislodged. The scan shows the rod has indeed dislodged but there is now concern that the screw at the top has come out causing her the discomfort. Anyway, this will be sorted next week as we go into GOSH on Wednesday for more spinal surgery. Hopefully things will improve after this. We will be in hospital for about a week; I’m dreading it and find it difficult to see Megan in such pain.
On a better note, things are going great for Megan at school. We still don’t have all the adaptations in place yet, but we’re getting there. Megan is looking forward to all her Christmas activities so i just hope she will be well enough to be there.
A huge thank you to the lady that sent Megan the colouring book and pens/pencils. She has had loads of fun and i have lots of pictures on my fridge door now. Sorry i can’t name you in person, but Megan got excited and just ripped your details, sorry.
Well i want to wish you all a merry Christmas and hope you get everything you wish for. If anyone would like to send Megan any posty when she is in hospital please make it to: Megan H, c/o Sky ward, Great Ormond Street hospital, Great Ormond Street, London, WC1N 3JH. Thanks, love Beth xxx
Update 27th November 2007
Hope you’re all well. I just wanted to let you know that Megan will be going into GOSH next week for more spinal surgery. Firstly Mr Tucker will lengthen the rods and then they need to repair the dislodged screw at the top of her spine. The progression is very noticeable now and is causing her a great deal of discomfort. She is quite anxious about going back to hospital and really doesn’t want to go. I’ve tried explaining she will be fine but she remembers the pain she was in before. I know it’s going to get worse over the years rather than easier.
Update 30th October 2007
Megan has had a very busy month with school and appointments. Her scoliosis has got worse and she has been in a lot of pain. The rods have dislodged in the top of her back and she needs surgery to sort that as well as making them longer. So she will have a few extra days in hospital and surgery is booked for 5th December. Due to the pain in her back she has lost a lot of weight in the last 2 weeks as she has not been eating. Her appetite the last few days seems to have improved slightly; hopefully we can begin to get back to our school routine. Megan is really enjoying school and has her own care worker Jackie. Jackie and Megan have really hit it off over the last month, Megan really trusts her which is great.
Thanks for the letters/cards that Joe and Megan have received this month, they both still run to the postman to see what he has brought.
Update 30th August 2007
Megan is doing ok at the moment. She’s having increasing pain in her back and arm, indicating the need for more surgery. She isn’t sleeping as she can’t get comfortable or move herself in bed. We are seeing the spinal team on 10th September so i will discuss these issues with them.
Megan is due to start school on September 17th. This is a huge step for us all and something we never thought we would see. She is going to a mainstream school and will have full time support. I will update you all with how she does.
Joe celebrates his 7th birthday tomorrow; i can’t believe my baby is growing up.
Well until next time, thanks for the posty Joe and Megan receive. Huge thanks to SOLAK for the gorgeous quilt that was sent to Megan. She loves it and wants it with her all the time. They can’t wait to see the postman everyday to see if there is anything for them, so thank you to you all once again.
Update 6th August 2007
Joe and Megan broke up from school 1 week early as we were going to stay in The Thomas Ball lodge in New Milton. We had a fantastic time and a well needed break. Joe and Megan spent every evening dancing with Sammy seahorse and friends. This is the 3rd year we’ve been there and we hope to be going next year.
On July 7th it was my cousins wedding. Joe and Megan were to be pageboy and bridesmaid. The weather was lovely and the kids did a great job. Megan pushed herself down the aisle and all you could hear were the spokey dokies on her wheels going round. I have to say it was quite an emotional day seeing Megan; 4 years ago we were told she wouldn’t be here and look at her now.
Health wise Megan’s not doing badly. She has been getting some pain in her right shoulder again if she’s laid on it too long or used it too much. The local pediatrician started her on an epilepsy medication for neuropathic pain 6 months ago, and she’s been great. I’m wondering if the dose needs to be slightly increased, we see the pediatrician in a few weeks so i will discuss this with her. It is very visible now that Megan has grown since her surgery in May, we see the spinal team in September and should find out when the next surgery is, I’m sure it will be at Christmas.
Joe has got his first wobbly tooth; he discovered it last night and is very excited about how much the tooth fairy will leave him! It feels like he is really growing up now. Joe will be celebrating his 7th birthday on 31st August, thanks to everyone who takes the time to send something.
Update 4th June 2007
Megan’s surgery on May 9th went well. The surgeons managed to lengthen the rods by 2cm’s which is a great success. Following surgery Megan was in a lot of pain for a few days but she’s now back to her usual self and back to school. She will have to go in for more spinal surgery just before Christmas. Her latest MRI showed no evidence of disease which is fantastic, she will have another MRI in a year but we will go and see the oncologist in 6 months.
Things on the school front are improving. I have a meeting with the LEA today for a mediation meeting. The LEA have agreed to half fund a hygiene room at Joe’s school if the school pay the other. This shouldn’t be a problem and we’re just waiting for the rubber stamp of approval. So after fighting for 2 years, i think we have finally got there. I will let you all know.
Megan is looking forward to being a bridesmaid for my cousin Emily next month and we’re just sorting out hair and everything. Megan keeps telling everyone she is going to be a princess. Well until next time, thanks for sending Joe and Megan things through the post and I’m not sure who to thank but we received 4 parcels all from John Lewis when Megan was in hospital. Two gifts for Megan and one each for Joe and me. So whoever you are, thank you very much.
Update 1st May 2007
Megan is doing ok at the moment. We have had lots of appointments lately. Megan had her MRI scan done on 17th April, we saw the consultant for the results and they all came back clear. We will see her again in 6 months and then have 1 more MRI done in a year’s time. She feels the chance of relapse is quite small now, although never say never.
Megan goes in for more spinal surgery on May 9th. She has grown so much that she is quite curved again; she is definitely ready for the rods to be lengthened. Hopefully she will only be in hospital for 3-4 days.
We’re still fighting with the local council with regards to Megan’s reception class in September. We have still been refused a place at Joes school so i am going to a tribunal in June, fingers crossed.
Thanks for the cards Megan has received, it really does put a smile on her face. I will update when we get out the hospital.
Update 3rd February 2007
Megan saw the spinal team last Monday and she will be having an MRI of her neck done when she has the oncology checks done. Her pain is much better now, but she still complains from time to time. She will be having surgery again in May to lengthen the rods. Time goes so quick, were only just sorting out the problems from the last surgery.
On a better note Megan got her new chair. She is now a very independent little lady with attitude. I can’t believe how different she is since getting it. Well i suppose she is 4 in March. I still think of her as my baby. Anyway thanks again for all you do, you’re all great.
Update 11th January 2007
Results were good. There is no sign of active Neuroblastoma. The tumour will always remain there as it cant be removed. She will be scanned again in April and see how we go from there. We see the spinal team on Monday to discuss the pain issues.
Update 3rd January 2007
Unfortunately Megan was quite poorly in the lead up to Christmas. She was running an extremely high temperature and was generally unwell. We were admitted to Great Ormond Street. The spinal surgeons thought maybe her spinal rods were infected. She was scheduled for an MRI. The doctors started her on iv antibiotics and her temp started to come down and she felt a little better. The MRI showed no fluid or puss around the rods which is great. However they noticed that the tumour in her spine had grown a little. We had to see the oncologist to discuss things. They tested some urine for VMA which came back normal. This can be an indication of Neuroblastoma, although not always. Her oncologist doesn’t feel that the Neuroblastoma has flared up again but she ordered an MIBG scan to be done. This will tell us for sure if anything has returned. Her scan will be done on January 3rd, please keep everything crossed for us.
We managed to make it home for Christmas. They let us out Christmas Eve, the best Christmas present ever. We had a fantastic Christmas and the kids were spoilt rotten. Thank you to everyone that sent gifts for the kids. I’m sorry i can’t mention everyone but as we were in hospital my neighbours were getting my post and sorting it for me. Unfortunately some tags went astray. A huge thank you to everyone that sent gifts to Joe and Megan for Christmas though. An extra special thank you to Megan’s Christmas elf Beanie. Megan loved receiving her big box of gifts. I wanted to thank you personally but mislaid your email address. Thank you to everyone that sent cards for Joe and Megan. They loved receiving cards from the reindeers and ran to the post every morning.
Wishing you all a very happy New Year and thank you for your continued support in keeping a smile on sick kids faces.
Update 28th December 2006
Megan was discharged from GOSH on Christmas Eve, so at least we managed to make it home for Christmas. She’s doing well at the moment although were still waiting for some scans to be done. We were told last Wednesday that Megan’s tumour in her spine has got bigger. The oncologists don’t seem too concerned at the moment, although were not quite as relaxed as they are. She is scheduled to have an MIBG scan on 4th January. Fingers crossed everything will be well.
As far as her being poorly goes they are still not sure what the problem was. Blood tests show that she has a severe infection somewhere but no-one seems to know where. The MRI showed no signs of fluid or puss to the spinal rods. They say that maybe she has a deep seeded infection. She went to theatre last week and had a pic line put in. She is very difficult to get a cannula in, and this has also made her terrified of doctors/nurses coming near her now. Anyway she is on oral antibiotics until January 15th, we will see the spinal team on that day and then she will have to remain on oral antibiotics for a further 3 months.
I want to thank you for your hard work over the last year. It has really put a great big smile on Megan’s face to receive posty, also Joe has been very lucky to receive a few bits. He has been unintentionally left out lately and this makes him feel like a special boy, so thanks again.
I will let you know when we have the MIBG results on 11th January. We’re praying for no Neuroblastoma cells to show up and will hopefully find out why the tumour is growing.
Update 30th November 2006
Megan is continuing to do well following her recent spinal surgery. We saw the surgeon on 24th November and they don’t want to see her until May, yey! We have had an ongoing battle with wheelchair services. She needs a new wheelchair and it cost over ¬£1000. Well a few hissy fits saying i couldn’t cope without a new chair seemed to help. Her new chair should arrive in 6-8 weeks. The council has refused to adapt Joe’s school ready for Megan to start there in September. It will cost over ¬£200,000 and i know it’s a lot but i feel it’s important for her to be with Joe and why should Joe move? I’m going to fight to the bitter end, and if need be take the local council to tribunal. I feel as if she’s being discriminated against because she has Neuroblastoma.
Well we’re all prepared for Christmas. I’ve nearly finished my shopping and the tree and decorations went up at the weekend. I know I’m early but Joe and Megan hassled me for hours. Megan is so excited this year; she’ll be 4 in March so knows more of what’s going on. She keeps telling me she wants Minnie Mouse and Cinderella for Christmas so she’s been quite easy to please. Joe just wants Dr Who, pj’s, pants, socks, so again Christmas is quite easy for me this year.
We have Megan’s next MRI scan on January 2nd, and results on 11th. Scan time is so hard especially as time goes on. We thought it would get easier but NO. Let’s just hope that nasty tumour is still not growing.
Well have a great Christmas one and all! Thank you to everyone who sends posty to Joe and Megan. Julie and Allan Barrett, Kate Dee, Laura and Chris for the doll, she loves it. A huge thank you to Megan R for her lovely gift to Megan. Megan loves receiving posty and really enjoyed the stamper and especially the Cinderella notebook and pen. She keeps telling everyone she has a diary now.
Update 31st October 2006
Megan is recovering really well following her spinal surgery. Her scar is healing really well and the stitches have nearly all dissolved. We will see the spinal surgeon for a follow up on November 24th. She will return to nursery on the 27th November all being well. We are trying to organize a new wheelchair for Megan, but of course the problem will be the funding. We’ve just received the letter regarding Megan’s next MRI scan. It has been booked for January 2nd; hopefully the hangover will be gone by then! 😉 We will get the results on 11th January. The longer she has been in the clear the slimmer the chances of it coming back.
Well we’re all looking forward to Christmas. Joe only wants Dr Who and Megan wants everything in sight. The year goes by so quickly; i can’t believe it’s nearly Christmas again. It will be the 2nd Christmas without my dad.
I want to say thanks to everyone that continues to send posty to Joe and Megan. I can’t remember everyone by name but you really make a difference to Joe and Megan.
Update 4th October 2006
Megan’s operation last week was cancelled. We were all prepared to go in and then with 24 hours to go they cancelled. No explanation – i was just told something came up. Anyway, Megan will be now going in to hospital tomorrow for surgery on Friday. We’re not looking forward to this operation, but she is in a lot of pain. Although initially she will be in a lot of pain, she should feel much better after.
Megan has now started at main stream nursery. She is really enjoying it, although the nursery have realised how much extra support is needed. We are now trying to start the statutory statement to get her extra support at school. Her teachers are really supportive to all her needs.
Our trip to EuroDisney was great. We can’t thank the children’s magical mystery tour enough. This organisation has been taking sick kids to EuroDisney for 13 years now. It’s quite an experience to see over 100 black cabs, police bikes, ambulances, AA and convoy vehicles all following each other down the motorway. The police bikes were stopping everyone at red lights and the motorway junctions so the convoy wasn’t broken. It was a very breathtaking experience. We all had a great time but were very tired when we came home. Our cab driver Mick stayed with us for the whole trip and helped us around the park.
Megan and Joe would like to say a big thank you to everyone that has sent posty this month. Big thanks to Kate Dee and Julie and Alan Barrett. I can’t thank everyone but you know who you are.
Update 12th August 2006
We just wanted to let you know that Megan will be having spinal surgery on Friday 29th September. We will be admitted on 28th. She will be in hospital for about 7-10 days. This will be 3 years to the day since she was diagnosed with Neuroblastoma. We are of course anxious about this but know it needs to be done.
Update 27th July 2006
Megan is having quite a lot of pain at the moment with her spine. I’m sure this hot weather doesn’t help. She’s taking more codeine to try and ease the pain. We go for pre-op on August 11th, so we should know when she will be having surgery. Although I’m 100% that it will be September.
We have just returned from New Milton where we spent a week at the Thomas Ball holiday chalet. We had a great time and Joe and Megan enjoyed singing and dancing with Sammy Seahorse.
Megan will be starting nursery in September. We’re still battling to find a suitable school for reception next year. Why can’t people see past the wheelchair and realise that Megan is a normal little girl? Things are very stressed at the moment.
Well i hope everyone is having a good summer. Joe will be celebrating his 6th birthday on August 31st. We’re going to try and make it really special after last year. My dad’s funeral was the day before so we didn’t feel like celebrating, so we must make it special this year.
A big thank you once again to Julie and Alan Barratt. Joe and Megan really look forward to racing for the postman.
Update 28th June 2006
Megan is doing ok at the moment. She is still having trouble with the back pain, due to the scoliosis. She will have her pre-op appointment in August, then all systems go for surgery in September. I’m dreading this but it needs to be done.
We’ve just been reviewed by the uro-dynamics team. Megan is still wet in between catheters, so they have decided to increase her medication and given her bigger catheters. If the medicine doesn’t work then we will have to increase the catheters to every 3 hours.
Nothing else on the health front really. I’m battling with the education department at the moment to find suitable schooling. I didn’t realise how stressful this would be. Every school mentions inclusion, but that’s as far as it goes. I will keep you all updated.
We’re going on holiday on the 8th July. We’re staying in New Milton at the Thomas Ball Charity holiday home. We are looking forward to getting away, and its lovely there.
Thank you to everyone who continues to send posty to Joe and Megan, they get very excited when the postman arrives. A big thank you to Julie Barrett, who continues to send lovely little things for Megan.
Update 19th May 2006
Just to let you all know that Megan’s scans have come back all clear. There is no sign of any disease. A great weight has been lifted. She will have another scan in November.
Update 15th May 2006
Megan is doing great at the moment, although she seems to be having a lot of pain due to the scoliosis. We have seen the GP and he has written to the surgeon regarding her surgery. The local paediatrician has also prescribed some Codeine for the pain. Hopefully this will help.
Megan had her MRI scans last week to check that the cancer hasn’t returned. We will get the results on May 18th. The catheterisation is working well and Megan doesn’t seem bothered by it at all.
On a great note Megan has been asked to go on the magical taxi tour. This is where 100 black cabs take sick kids and their families on a magical tour. We will be going to Euro Disney on September 15th. This is a massive event that gets a lot of publicity worldwide. Last year the cabs were in a convoy on the motorway for 3 miles. I’m sure it makes great viewing and it is something for us all to look forward to.
Megan’s lift will be fitted this week; this will make life so much easier for me and Mick, and give Megan a lot more independence. She needs to be doing things on her own as she does get very frustrated having to rely on everyone else.
Anyway until next time i want to say a continued thank you to everyone who sends posty to Joe and Megan, it really makes their day. I would like also like to say a great big thank you to Julie Barrett. She sends some lovely posty to Joe and Megan; also her parents sent a lovely huge doll to Megan. She has named her Emily and insists on taking her to bed with her every night.
Update 22nd March 2006
Just wanted to let you know how Megan’s is doing. We now have to catheterize her. We have spent 2 days at Great Ormond Street for training. At first Megan wasn’t too keen, but she has adapted really well to her new routine.
She will be having her spinal surgery in September. Her spine has now progressed to 60 degree. The surgeon wants to insert some spinal growth rods. She will then have to have the rods lengthened every 6-12 months as she grows. She will then have her spine fused when she is a teenager. I’m not looking forward to this but it has to be done.
I want to say a big thank you to everyone that sent gifts and cards for Megan’s birthday. I must admit i have lost count of the number of cards she received. I would also like to say thank you to everyone that sent a little something for Joe. It meant a lot to him while Megan was being spoilt rotten. She had a great day with loads of pressies and a small party for family. Look forward to updating you all soon.
Update 4th March 2006
Megan is doing well at the moment. She had a review at Stanmore earlier this month. They seem pleased with her progress. They did talk about botox injections in her ankles because she has lots of spasms.
Megan was seen at Great Ormond Street yesterday by the spinal surgeon. Her 40 degree scoliosis has now progressed to 60 degree’s in just 6 months. He has decided he wants to get her in for surgery. They want to put in spinal growth rods that will grow with her. This means she will need surgery every 6-12 months to lengthen the rod, as she grows. There is a 6 month wait, but I’m sure that will arrive really quickly.
Megan will be celebrating her 3rd birthday on Sunday 12th March. This is such a big milestone considering she was so poorly 2 1/2 years ago. Not much planned really, just lots of presents and cake.
A big thank you to everyone who continues to send cards and gifts. It really means a lot to Joe and Megan.
Update 20th January 2006
Just wanted to let you know Megan has just had her MRI and the results came back all clear today. The remaining tumour is not active and hasn’t grown at all. This is great news as we were sure she might have relapsed as she has been so unwell lately. Catheter training next week and back to see the spinal surgeon in March. I’m sure he’s going to want to do surgery.
Update 30th December 2005
Megan is doing ok at the moment apart from suffering with a really bad cough and cold that she seems to have had for ages. She is finally on antibiotics. Euro Disney was great; we met loads of the characters and had a great time. Thank you to The Thomas Ball Charity for making the trip possible. We had a really good Christmas, although it was strange my dad not being with us. Megan is due for her next MRI scan on January 11th, we will get results on the 19th. Then we are back to Great Ormond Street on January 23rd and 24th for catheter training, something I’m not looking forward to but has to be done.
I would like to say a great big thank you to Sally Barrett who was their Christmas Elf this year. We received a HUGE box for both the children. The children loved opening all the presents from the Christmas Elves. Also a great big thank you to everyone else that sent them gifts.
I wish everyone a great new year and hope that 2006 is a better year for us all.
Update 6th December 2005
Just to let you know we are going to Euro Disney on Thursday. This trip has been organised through The Thomas Ball Charity. Three magical days with Mickey, Minnie and friends. Megan is doing great, but had a slight ear infection last week. Will update when we return.
Update 23rd November 2005
Megan is doing really well at the moment. She seems to have got over the scarlet fever really well. Great Ormond Street have decided that we will start catheterizing Megan. We go for training in this procedure on January 11th.
Friday 25th November we are going to stay in New Milton at TJ’s. This is the new lodge recently purchased through the Thomas Ball charity. We went in the summer but had to return early due to my dad being so unwell. Anyway the charity have offered it to us again for the weekend. We are really looking forward to it.
Nothing else to report really. We have no hospital appointments until January now, yey. This will be the big one though. It will be her MRI to check the remaining tumour in her spine hasn’t changed at all. We hate scan time, its a really scary time.
I look forward to the next update, i can let you know about the break we’re having.
Update 7th October 2005
We have spent the whole day at casualty with Megan. She was running a high fever for 2 days and developed a nasty blotchy rash. Anyway after waiting 8 hours we were told that she had scarlet fever.
Update 3rd October 2005
I would like to say a big thank you to anyone who sent posty to Joe and Megan. My dad lost a short battle with cancer in August and posty has really helped them both.
Megan has recently had her 4 monthly MRI scans. They all came back clear, which means Megan is till NED. She also had some bladder scans done which so that she does have some bladder control. We have to wait to meet with her urologist but hopefully this means we wont have to catherterise just yet.
On a downside, Megan’s scoliosis has progressed. The spinal surgeon will see her in 6 months and if there is more progression she will have surgery, to have a spinal growth rod.
Again a big thank you to everyone who sends posty, it really brightens their day.
Update 17th September 2005
The good news is that Megan’s scans all came back clear. It has been such a tough few months we needed some good news.
Also her bladder assessments show she has slight bladder control which is great. We have to wait for an appointment with the urologist but we had good news all round.
Update 29th June 2005
What a fab thing you do. Joe and Megan enjoy getting parcels/envelopes for them, it makes them feel special. I want to say thank you to Kate, Sue and Lorna for the lovely gifts.
Megan is doing well. She finally got her wheelchair, its only took 10 months! She’s learning really quickly.
Her tests at Great Ormond Street were cancelled as she had an infection. These were bladder tests and are very important, so I have to change for another appointment.
Now it’s the school holidays, we are all looking forward to a holiday in August. We are going to Hampshire for a week and can’t wait. The holiday has been donated by the Thomas ball charity. We are so grateful for their generosity. I can’t wait to let you know all about it.
No more hospital appointments for 4 weeks (that’s a first!). The next MRI is scheduled for September, so that will be a tough time.
We are looking forward to Joe’s birthday at the end of the month. We have booked a party at the local ball park for him and his school friends, they both really enjoy going there.
Update 22nd June 2005
We are back at Great Ormond Street 4th July to have pre-op assessment for the following week when she will have the pubic lines put in to check the proper function of her bladder. We will be going in on the 11th july and have to stay over night in the patients hotel. More tests will be done on July 12th. We are still waiting for an appointment with Megan’s Neurologist. Her appointment was cancelled when she had chickenpox.
Max was born with chronic renal failure, which meant that both of his kidneys were not working and he has only ever had about 5% kidney function. Max was 8lb 6oz at birth but had a lot of fluid around his body and within 24 hours he weighed 7lb 4oz. Max has undergone several operations in the past 2 years, the first one at 3 days old to create an artificial opening through his tummy wall into his bladder so urine could drain constantly, and to insert a dialysis catheter, which was never needed so was removed when Max was 10 weeks old. More operations followed and Max has spent lots of time in hospital, or at home attached to one machine or another, but he has always been so brave and resilient.
Max has had dialysis previously but had constant infections in his catheter line so was taken off dialysis in September 09, and by nothing short of a miracle, Max has not needed dialysis since. All Max’s doctors are baffled as to how Max’s little body is coping, and how he remains so well, as he really should be critically ill, but Max is a fighter and doesn’t let anything get him down or stop him.
Max is waiting for a kidney transplant and is about to go on call for a donor, whilst his mom and dad are both being assessed as potential donors. Max has regular blood tests to monitor his condition and he has an injection once a week, and is fed via a gastrostomy. Max has a huge food phobia but with the help of several therapists is slowly learning about food and can now touch certain foods, although he doesn’t eat anything at all.
Although Max is 2 and a half, he is very small, in only 6-9, or 9-12 month size clothes!! Max is due to start pre-school in September, so we are currently trying to order uniform for him, in his tiny size!!
Update 2nd June 2014
After a very difficult 8 months we are very pleased to say that Max is doing really, really well! Max’s transplanted kidney is working well and he’s now able to eat and drink and has even managed to go back to school!
With this in mind we feel it is time to move on and let other children who need the smiles more receive the post and lovely gifts you guys send!
We are extremely grateful for all the post Max and his siblings have received over the past few years, and for all the love and support shown to us during some difficult times!
With love & best wishes
Michelle & family x
Update 7th March 2014
I’m very happy to say Max is now home after 5 months in hospital following his kidney transplant… and so far so good!!
Update 2nd January 2014
Max has been in Southampton General since 28th November and still no sign of coming home.
Jack has decided he’d like to give up his post for poorly children as he’s older now, but thank you to those who sent to him. Kacey and Max still both love receiving post, so a massive thank you to anyone who sends things.
Update 3rd December 2013
Thank you so much for all the love and support you have all shown towards Max and our whole family during Max’s kidney transplant. Max is doing really well and the new kidney seems to be working well. We’ve all had a sick bug recently which meant Max needed to spend a couple of days in Southampton hospital, but hopefully we’re over the worst now.
Update 29th October 2013
Three weeks ago today my baby had his kidney transplant! What a long 3 weeks it has been, with lots of ups and downs! But… (all being well!) we’re transferring back to Southampton for a couple of days then hopefully HOME!! We all cannot wait to have Max home and have some family fun time! Thank you for your support along the way!
Update Sunday 13th October 2013
Day 5… Max is doing well, he’s able to move himself in the bed using his hands and feet, and he’s sat out in the chair twice! His bloods are still coming down but very slowly, and his urine output is good. Ultrasound shows good blood flow to the kidney. Max has a small amount of internal bleeding in his bowel, which is being very closely monitored, so he’s only allowed sips of squash at the moment.
Max is very vocal, and is saying the funniest things, making us all laugh so much… he’s one amazing little lamb.
Update 10th October 2013
Max is doing ok, he’s been in a lot of pain but pain relief has been increased, so he’s now sleeping a lot. SAM (the kidney) is still sleeping but is doing well and we are hopeful it will kick in soon, meanwhile Max’s kidneys are holding their own. The surgeons and nephrology team are happy with the situation and its just a waiting game now. Max is having lots of IV fluid so is very puffy. Thank you for all your good wishes and for keeping us all in your thoughts.
Update 9th October 2013
Max had his kidney transplant yesterday. He had a restless night in ICU but is battling on as always. Max’s dad, who donated his kidney, is up and out of bed and hoping to be able to visit Max soon.
Update 7th October 2013
Max is currently in hospital and is going to receive his dads kidney.
The address to send post whilst he’s in hospital is:
Max continues to have haemo-dialysis 3 times a week in Southampton Hospital, which is very time consuming and poses many restrictions, both socially and physically due to his perma-cath lines. Max is always positive and such a happy cheeky little chap though, you can’t help but love him!!!
We are all very grateful to everyone who stops to think about, and send a little card, note or gift to brighten his day. The colouring and sticker packs are brilliant, we create many pieces of art, which hang with pride! Kacey and Jack also love receiving their post, and it is so lovely to see the smile on their faces, so THANK YOU so VERY VERY much.
Update 8th March 2013
Max is doing well, though still dependent on haemo dialysis 3 times a week at hospital, whilst waiting for a second kidney transplant, either from a live, or deceased donor. Max has many restrictions and has a lot to cope with but remains happy with a positive outlook, which keeps the whole family going.
Update 5th November 2012
So sorry for not getting in touch for ages, Max has kept us all on our toes!!
He’s had quite a good run of health over the past few weeks, until last week (30th October) when he became quite poorly with high temp etc, so he was admitted to hospital where he stayed for over a week. He has now come home but we have to return to the hospital daily for IV antibiotics, due to the infection that Max had, which we now know is a blood infection!! Max is still on haemo dialysis 3 times a week, but he copes well and now does some school work whilst having dialysis.
Update 28th February 2012
Firstly can I say a MASSIVE thank you to everyone who has shown us all so much love and support over the past few weeks, we have all been through a really tough time, so THANK YOU!!!! We really appreciate it!
Max is doing ok, he’s now on haemo dialysis at Southampton hospital 3 times a week, he copes well with it, and it means he is closely monitored, which he needs right now. He needed a blood transfusion last week, but seems a bit better now. He returned to preschool for the first time today and loved it, after screaming and crying for the first 20 minutes!! We are all hoping to establish more of a routine now, so a little bit of normality can creep back in to everyday life, or is this to much to ask for?!
Max continues to be happy and cheerful most of the time, he can be a cheeky monkey, but it is his fantastic personality that carries us all through the ups and downs!
Thank you to everyone at Post Pals, you’re all stars!
Update 19th January 2012
Max is having yet another trip to theatre, this time to remove the new kidney as the transplant has failed and it’s making him very poorly.
Update 18th January 2012
Well, after a very long and exhausting roller coaster journey, tomorrow is going be d-day! Kidney stays and we struggle on? Or kidney comes out and we get my baby well, recovered, and home with a plan! Personally, after seeing him struggling to breathe today and needing oxygen, I think we should remove it and let him heal. Nobody wants a half hearted transplant that’s causing more problems than previously had! So let’s wait until tomorrow to get a plan and do it. I just want my baby safe and well, we’ve all had enough now!
Update 16th January 2012
Max was doing really well after his kidney transplant and was hoping be home at the weekend, but he wasn’t transferred as ‘bloods showed early signs of rejection’. It meant he had to go to theatre for biopsies as the scans showed the kidney wasn’t emptying properly and so a catheter was put back in. IV meds were needed, but after 6 needles that day he had no veins left, so they had to wait for a PICU doctor.
Max’s bladder wasn’t working properly but the biopsies showed no sign of rejection. He is now in ICU. Surgeons removed a large blood clot from the artery to his kidney. The kidney has been saved but he has had to go back on dialysis to give it a rest.
Update 7th January 2012
Max went into theatre for his kidney transplant on the 4th January. He was put on a ventilator and sedated in PICU but was quickly off it and the first thing he said was ‘can I have some coke and stand up now?!’
Our thoughts are with Max’s family and also with his donors’ family.
Post can be sent to Max in hospital, he would love to receive some smiles!
Address: Beach Ward, Evelina Children’s Hospital, St Thomas Hospital, Lambeth Palace road, Westminster, London, SE1 7EH, United Kingdom.
Update January 2012
Max got his call and had his transplant! He is getting stronger by the day and hoping to transfer to his local hospital soon.
Update 18th August 2011
Max is doing really well on dialysis at home, but it means we are sometime restricted by the routine. However, we manage and Max’s siblings are amazingly understanding and supportive. No news on transplant yet, but hopefully it wont be to much longer, although sometimes it seems like an impossible dream!
Thank you so much for every piece of post, which the kids just love receiving, and really brighten up their day. Jack (Max’s brother) had lots of birthday cards which is just lovely. We’re all very touched by people’s generosity.
Update 13th April 2011
Thank you so so much for your lovely cards and gifts sent to Max during his long hospital stay whilst his dialysis was established and balanced out. The post really cheered him up and helped pass the time of day. Max is home for now, long may it last!
Update 13th March 2011
Max now needs dialysis daily (12 hours out of any 24 hour period) and will be going into hospital tomorrow for 3/4 weeks (maybe home for a couple of days in the middle somewhere!). He will be going to theatre on Tuesday afternoon to insert the dialysis catheter, and hopefully starting dialysis after about a week or so.
Update 1st March 2011
Max continues to do well against all the odds!! We have been told it is only a matter of time before Max requires dialysis again so we enjoy each day as it comes at the moment!
Max has recently gone from a cot to a big boy’s bed – a massive step for someone attached to machines over night – and very scary for mummy too!! He has done fantastically though and is such a big boy now!!
Thank you to everyone who continues to put smiles on the children’s faces with your lovely cards and gifts. Thank you for Max’s lovely teddy which he now snuggles up with in bed, and thank you for Kacey’s fabulous parcel. The packaging was brilliant, almost too nice to open! Kacey loved all the items in the parcel and has had great fun. Many thanks.
Update 2nd January 2011
Thank you so so much to everyone involved in the elf scheme. Max and his siblings had some amazing gifts and their little faces light up when receiving such amazing parcels. Just magical, thank you.
Thank you to EVERYONE for everything, from cards to gifts, they all mean so much and make Max and his siblings so happy.
Update 2nd October 2010
Max continues to do extremely well with very little medical intervention, which completely baffles all our doctors, who describe Max’s condition as ‘eye wateringly painful to read on paper’. Yet Max is doing well at present as though he has no illness, so he is allowed to plod on for now, although we have been told he could become very very poorly very very quickly as his blood results already show that he should be chronically ill, so we make the most of every day. Max has started Pre School now and he really does enjoy it (once I’ve left him and he has some dutiful tears, for my sake of course!). We are hoping to meet the transplant surgeon as soon as possible to get the ball rolling for Max’s transplant, but it is quite hard to co-ordinate appointments when we live 160 miles away from the hospital!!
A massive thank you to Beckie for Kacey’s box of goodies for this month’s theme, she was so excited walking home from school that I thought she might actually burst, she LOVED it! Everyone loves the Dottie project, our litter mate Ellie goes everywhere with us, and we do get some strange looks when we are taking pictures of her! She even has her own facebook page! And THANK YOU to everyone who continues to send post and put a smile on the children’s faces!
Update 31st August 2010
Max is due to start main stream pre-school on the 8th September after the staff receive some training from the medical team. This is such a marvellous milestone which we didn’t know if would reach, so it is quite an emotional time right now.
Max has about 4% kidney function at the moment, but continues to fight and live life to the full with very little medical intervention. This really baffles the doctors and consultants, but in their words, something is working so don’t change it!! We are due (overdue really!) to meet the transplant surgeon and transplant consultants in London soon (hopefully this month) to get Max listed for a deceased donor and to continue the work up for a live donor.
We are hoping to get away for a few days towards the end of the month, not too far, just a little break, which will be nice.
Thank you to everyone who has sent post to Max and his siblings, they really do enjoy receiving their post. Max and Kacey were really excited to receive a letter from Dotty, and cannot wait to meet their new puppy – they have lots of adventures planned. Max loves sticker books so has had lots of fun playing with them this month, especially as the weather has been rotten!! Thank you so much to Donna & Matt for the gorgeous hand made teddy for Max, he loves it.
Update 18th August 2010
Max and his siblings really love getting post; it is amazing to see such a huge smile from such a small gift/letter, so thank you so much to every ‘friend’.
Macaulay was born on the 20th of March 1995. He had pneumonia and was in special care for 15 days. He was then allowed home for 2 weeks and wasn’t feeding properly or gaining weight. He was then transferred back to hospital where they detected a heart murmur so he had an operation to repair that at 5 weeks old at the Royal Brompton in London. He was then transferred to our local hospital to recover.
Then they found he had more problems as he kept projectile vomiting, so they did a Nissans operation to stop him from being sick. From there on his health went down hill, I battled for 7 years to say there was still something wrong with him as his stomach blew up like a balloon. They eventually transferred him to Great Ormond Street Hospital where it took them 1 year of extensive testing to come up with the diagnosis of his problem – Neuropathic Pseudo Obstruction.
The only treatment for this is several different medicines; they have formed an ileostomy and gastrostomy. He is on Peptamin fed via his gastrostomy 3 bolus and 1 pump feed.
Update 29th March 2013
Macaulay is moving on from Post Pals as he is doing relatively well. Post Pals has been a great support to him and my family over the years and I would like to thank you all for all the hard work that you do. You will always be thought of in my heart and I hope Post Pals keeps growing and more support is given to you.
Thank you all again, Andy, Macaulay and family xxx
Update 1st March 2013
Hi everyone, we hope you are all doing ok. Macaulay has had an ok month. He had his last visit to GOSH as he will be reaching 18 on 20th March and he has now been transfered to UCLH. It was sad to say goodbye to his doctor as he has been going there for about 9 years. They have been great over the years and we have got to know them very well. We will miss them very much. It was also his last month at his respite place as he will now be moving over to the adult side of social services. I can’t believe he will be 18 soon, the time has come round very quickly, it is so scary. He has 1 more year left at school then he will go off to collage for a bit then we will have to help him find a job.
Thank you for the post that has been sent to Macaulay and his siblings.
Update 14th January 2013
Hi everyone, I’m sorry I’ve not updated for a while things but I’ve not been too good with my own health.
Macaulay is not too bad at the moment and he has been busy at school and college. I have been chasing GOSH for a while now as they have not seen him for a long time and they are supposed to be sorting out a transition meeting as he will be 18 in March. He has had a few obstructions since they rejoined his bowel but not as many he was having, so fingers crossed things have calmed down now he is older.
Thank you for the post sent to Macaulay and his siblings, they do love receiving it.
Update 17th October 2012
Hi all, I’m sorry for not updating for a while but I have not been too well of late and had to go in to hospital 2 weeks ago to have my spinal stim sorted out.
Macaulay is doing well at the moment, there has been a few bad days for him, but he seems to be doing good now. He is enjoying school and collage – he is making a bird table at the moment so it will be good to see the finishing table.
Thank you so much for sending the cards and gifts that Macaulay and his siblings have received, they are very grateful.
Update 12th March 2012
Macaulay has had an okay month. GOSH put him on a new feed but it was too rich for his tummy and it was making him feel really uncomfortable, so he had to be put back on his old feed.
He is enjoying going to college one day a week. He is learning life skills and made some cakes which he was very proud of.
I am going in to hospital myself soon to have my spinal-cord stim sorted out as it has been causing me some problems.
Thank you to everybody that sends mail, it puts a big smile on their faces when they get post. I would also like to thank you all for the very hard work that you put in to making Macaulay and his siblings smile. I hope you are all managing to stay as well as possible and not getting these horrible bugs that are going around at the moment.
Update 12th February 2012
January was quite a busy month for Macaulay with lots of different appointments. There has been lots of changes made, he has been put on some new feed and new meds to help make things a bit better for him, so let’s hope it does. He has not been feeling too bad but he has his moments where his tummy flares up. I’m still not sure it was the right move for his bowel being rejoined.
Macaulay is starting collage after half term, so a fresh challenge for him. We hope everyone is as well as can be and thank you for the post that has been sent to Macaulay and his siblings.
Update 11th January 2012
Hi everyone, first of all a happy New Year to you all!
I’d like to say a great big thank you to Sandwell Academy for all the lovely gifts they sent Macaulay and his siblings, your very kind thoughts blew us away. A huge thank you to Macaulay’s elf too and for the lovely cards he received.
Macaulay isn’t doing too bad at the moment. There is being some changes made with his feed though as he is losing lots of weight which isn’t good. When we was last at GOSH his consultant wasn’t too happy with the way his tummy looked so we are hoping things will settle.
We all had a lovely Christmas and Macaulay was very excited. Macaulay is glad to be back at school and into a routine though.
You all work so very hard to help put a smile on our children’s faces and I would like to say a big thank you to you all.
Hope you are all well and take care, love Andy and Macaulay.
Update 6th October 2011
Macaulay has had some up and down days of late but he just plods on through it all. He is enjoying school and going to college. He is doing cooking two days a week so looks like I need him to start cooking me my dinner now!
We had a party on Saturday for his brother, Grant, who is now 18 and we all had a great time.
Macaulay is loving playing with his new little sister who is growing very quickly.
He has some hospital appointments coming up so lets see what’s next for them to do.
I hope everyone is well and thank you for the post that has been sent to us.
Update 29th August 2011
Macaulay has had some up and down days the last couple of weeks but is doing ok at the moment. He has got to go in GOSH on the 3rd September for more surgery.
We have managed to go out on some days out the last couple of weeks, but it has been difficult for me as I had an operation on my back on the 9th.
Macaulay is looking forward to going back to school as he will be going to college 1 day a week which will be good for him.
Thank you to everyone that has sent post to Macaulay and his siblings.
Hope everyone has had a good summer and take care.
Update 11th August 2011
Just a quick update as I’m not feeling too good after my surgery.
Macaulay is doing ok at the moment and has been busy going to all his clubs. He has got to go to GOSH soon to have more surgery though.
I hope you are all well. Take care, Andy.
Update 29th June 2011
Macaulay is not so good at the moment, he had his operation on the 3rd to rejoin his bowel, but since then he has not been so good. He gets lots of trapped wind which makes his tummy blow up like a balloon. We have been up to GOSH every week since, as the doctors are keeping an eye on him and if things don’t settle down he may have to have the stoma back, but it will be for good this time.
It was great to meet some of you at the party. We enjoyed it and Macaulay loved having his picture drawn.
I hope you are all well and can enjoy some of the sun we are getting at the moment. Thank you for the post that has been sent to the children too. Take care, Andy and Macaulay.
Update 5th May 2011
Macaulay is not having a good time at the moment. His stoma is prolapsing 3 to 4 times a day. We are still waiting for the surgery date so it all can be sorted out. The new baby is due this month as well so we hope it is sorted before then. It’s making things really hard for him as he is not allowed to do any sports or swimming, which are things he enjoys very much.
It has also been a very sad month for him as his uncle passed away very suddenly. He will be greatly missed.
We hope you are all well and enjoying the lovely sun we are getting at the moment. Thanks again for all the lovely post.
Update 5th March 2011
It has been a busy month for Macaulay. He has been going up to the hospital once a week since his bowel prolapsed to have blood tests, as his sodium levels are low so they’re keeping a close eye on him.
We are still waiting for the date for him to go back into GOSH to have the bowel rejoined.
He is still not back to his full activities at school, like his football and basketball, which is frustrating for him.
Thank you to all that have sent cards and gifts to Macaulay and his siblings. It puts a big smile on their faces. We hope you are all well and have a good March.
Update 7th February 2011
It has been a crazy last couple of months with lots going on and to top it all off I had to rush Macaulay to London to GOSH on the 25th as his bowel prolapsed quite severely. He had emergency surgery that night and they managed to save bowel and put it back into his tummy. The surgeon has now decided enough is enough and is working with his gastro consultant to re-join his bowel in March, which means a long stay in hospital.
Macaulay is still weak from what happened and it is as though he has given up. He has said he has had enough so now so I’m trying to encourage him to keep going.
Macaulay is hoping to go back to school soon but his return has to be staggered.
Hope you have all had a good start to the year and are well. Take care all, love Andy and Macaulay xx
Update 7th January 2011
Hi and happy New Year to you all. It has been a hard few months during the build up to Christmas and Macaulay is having his ups and downs but he soldiers on.
We went to our local hospital today to see his gastro consultant. Things have stayed the same for quite some time now and Macaulay is on this long road with his illness that doesn’t seem to be going anywhere. He sees two gastro consultants that have different opinions (one at our local and one at GOSH). The surgeon at GOSH has said that it would be better for Macaulay to have his bowel reconnected and for them to do something different, but at the moment his doctor at GOSH is very reluctant to do it. However the one we saw today said they won’t know what would happen unless they did it, but I’m not so sure if I want to put Macaulay through it for him to go back to square one. So we have difficult decisions ahead.
Sadly, on the 14th of December I lost my Mum, which was not expected. Our Christmas was ok but hard as my Mum’s funeral was on the 21st.
On a happy note, my new baby who is due in May will be a baby girl which I’m very happy about.
Hope everyone had a good Christmas and New Year. Thank you to everyone who sent the children post, they were very excited with the gifts they got. Take care everybody and have a very happy and healthy 2011. Love Andy & Macaulay.
Update 14th December 2010
Hi everyone sorry for the late update but it has been a bad month all round. Macaulay is doing ok at the moment, he still has his ups and downs but he is plodding on. Bless him; he is getting very excited for Christmas. He is doing his Christmas play at school this week which he has a leading part in, so I can’t wait to see that.
I’m trying to stay strong at the moment as my mum is seriously ill in hospital and it is not looking too good for her. I will be glad when this month is over as it has been a hard old month.
I hope you are all well and you all have a very merry Christmas. Thank you for all the post that has been sent. Love Andy and Macaulay xx
Update 3rd November 2010
It has been a hard old month. We’ve had lots to do and Macaulay has had a couple of appointments. He is going to GOSH this month to see his consultant and surgeon to talk about his stoma after they redid it. He has had some obstructions this month so not sure if what they did has made it any easier for him.
I’m still having lots of problems after my surgery; the stimulator is not working so well so I’ve had lots of pain. My wife is also not so good at the moment. The good news is she is having a baby, but the down side is she gets very sick and has to keep going in to hospital to be rehydrated. She is on her fifth stay and she is only 12 weeks along, so I’m hoping things settle down soon.
Thank you for the post that has been sent this month. I hope you are all well and looking forward to Christmas. Take care everyone.
Update 5th October 2010
It has been a crazy month. Macaulay is doing ok at the moment though has had lots of appointments at different hospitals. I’m still recovering from my operation, it has been very sore and I need to go back to have my stimulator sorted out as it is giving me some problems. My wife has not been too well either so its been a crazy time, but all good fun I guess?!
Hope you are all ok and thank you for the post that has been sent.
Update 17th September 2010
Sorry I’m a bit late with this update but it’s been a bad month. Macaulay has been up and down with illness, he had his stoma re done but it has prolapsed a couple of times. We’ve been back to GOSH to see the surgeon; he has put Macaulay back on the operation list to have it sorted out.
He is settled back in to school now after a long summer holidays – his started early because he had his operation before the start of holidays.
I have had my operation now too; I had it on the 7th of September to have my spinal cord stimulator implanted. I’m not allowed to do anything for 8 weeks which is driving me mad.
I would just like to say thank you for the hard work that is put in to making Macaulay happy, as well as the other Pals. A very big thank you to Ria for the lovely pillowcases and to everyone who has sent post.
Update 3rd August 2010
Hi everyone, I hope you’re all well and having a great summer.
Well, where do I start?! It has been a busy time. Macaulay had his operation in June which went ok but he was not allowed back to school for two weeks after the operation. After that, he was all set to go to school but then he got an infection in the operation site, so he was not allowed back again and his summer holidays started early.
Then, about two weeks ago, he was in the garden with his brother and sister playing when he had to go and empty his stoma bag. After doing that he came up to me and said ‘Dad feel this’ so I did and his bowel had prolapsed about 5 inches. I had to ring the ambulance to take us to the local hospital and when we got there the doctors had to ring GOSH as it could not be dealt with at my local. We had to be rushed up to GOSH as if the bowel was left much longer it would die. When we were about 5 minutes away we saw it had worked its way back in, so they kept him in over night just to make sure it did not do it again. The surgeon had done an operation to stop this from happening, but the stitch has broken away and it prolapsed again last weekend too. So, now we are just waiting for the surgeon to come back from his holidays so he can deal with it.
I had my operation when Macaulay was in GOSH – he had his on a Friday and I went over to GUYS on Saturday and had mine, then went back to GOSH. It went well and has helped with my pains so now I’m waiting to have it implanted in my body.
Thank you for all the post that has been sent and for the swimming pool, the little ones love it.
Have a good summer, love Andy and Macaulay.
Update 31st May 2010
Hi everyone, sorry I didn’t update last month but as you know I had an operation on my back to help with my pain. The good news is it worked for the pain in my leg but not my back, so I’m going back in to have this new thing they are trying at the moment – fingers crossed it works.
Macaulay was due to go in GOSH at the end of May but it has been moved back to the 24th June, so will be in there with him for a couple of weeks.
Macaulay received his love quilt this month which is lovely and a lot of hard work has been put in to making it. We would like to say thank you so very much to all that made it. Thank you also to everyone that has sent cards, letters or a gift this month.
He is doing ok at the moment. He has had a few ups and downs but he keeps on going. Hope everyone is well and I hope you are all managing to enjoy the sun we are having. Take care, love Andy & Macaulay.
Update 3rd April 2010
Macaulay has had an up and down month with his illness and has been getting lots of obstructions. We went to see his surgeon at GOSH last week as his consultant wanted him to see him because he thinks it is Macaulay’s stoma that is causing the problem. The surgeon is going to redo Macaulay’s stoma as it is protruding into his stomach, so he said it will be a 3 hour operation to sort it out and a 2 week stay in hospital, which will be at the end of May.
He had a great birthday and got lots of cards and money which he bought himself an Xbox with. It is something he has wanted to get for a while. We took him bowling and for something to eat afterwards. Thank you so much for all the lovely cards that you all sent.
It is going to be a busy couple of months with hospitals as I’m going in soon for an operation on my back too, but not until I’ve got Macaulay sorted first.
Hope you all have a happy Easter and don’t eat too much chocolate! Take care everyone, love Andy Macaulay.
Update 10th March 2010
Sorry I’m a bit late with the update but I have been in hospital myself for two weeks.
Macaulay has had an up and down month. We are waiting for him to go in to GOSH to have his stoma refastened as his doctor thinks it will help it work better and they are giving him a break from some of his meds to see what happens.
Next week he has a pantheon challenge 5 aside football competition with school which will be good and he got a gold medal last year.
Hope all are well and this weather starts to change. Thanks for Macaulay and his siblings post.
Update 6th February 2010
Macaulay has had an up and down month. We went to GOSH to talk about a bowel transplant, but at the moment they don’t feel it’s for him. They are looking at some other options, his medication is going to be changing, and he will need to go into hospital to have his stoma re-done to see if that will help with the soreness and the blockages he’s getting.
Macaulay has been working hard at school and he has some football tournaments coming up which he will have fun taking part in.
I (Macaulay’s dad) am going into hospital from 22nd February for 2 weeks to have treatment on my back and an operation at the end of it.
We hope you are all well and had a good January. Take care everyone and thank you to everybody who has sent post.
Update 6th January 2010
Macaulay had a great Christmas. He was very excited we went to stay with family and everyone had a nice time.
Thank you to all the lovely elves who took the time to send Macaulay and his brothers presents. They really loved them. Hope you all had lots of fun at Christmas too.
We have lots of snow at the moment, like most of the country, and the kids are loving it because they have no school.
Macaulay is going to GOSH later this month to talk about the next step on what they going to do.
Hope you all have a very happy year, love Macaulay and Andy.
Update 3rd December 2009
Macaulay has had a ok month. We went to chase to meet Simon Cowell which was good and Macaulay got very excited. He has been working hard at school for his Christmas play, plus he has had lots of outings with school. He has gone Christmas shopping today with school, so I hope they don’t get to wet with this bad weather we are having at the moment.
On Tuesday night he went to a party at Crystal Palace Football Club, they have a Christmas party for disabled children every year and he had lots of fun and met lots of the first team players.
On Friday we are all going to the chase for the weekend and it will be our last stay as Macaulay will not be going there any more. We are going to miss it as they have been a great support over the years.
We are still waiting for an appointment to go to GOSH to talk about the bowel transplant.
We wish everyone a very happy Christmas and a great New Year. Hope you all have fun and have lots to eat.
Update 1st November 2009
Macaulay has had an ok month with his illness. We went up to GOSH to get some results and they where ok.
We have to go back to GOSH soon to have a meeting with his doctors to discuss a bowl transplant though.
He has been working hard at school and we went to the chase on Thursday to meet Simon Cowell. He gave Macaulay a signed picture which Macaulay likes and he was also in Friday’s Star newspaper. Simon Cowell was very nice to all the kids – he is not like people think he is!
We hope you are all well as can be and thank you for the post that has been sent.
Update 6th September 2009
Macaulay has had a good fun filled 6 weeks holiday. He has been places with his carer, stayed at his respite centre, and went to the 02 with them to see Walking With Dinosaurs. Then we have stayed with my in-laws and we went to the Littlehampton beach which was good. We also saw one of the other Pals and it was good to catch up.
Macaulay’s health is still up and down and we are going back to GOSH in October for results.
I’ve been put on new drugs for my back but they are not working, so when I go back this month I will be telling them and hopefully they will suggest something that will help.
Hope everyone had a good summer and is well.
Update 4th August 2009
Macaulay is doing ok at the moment. We went to the Isle of Wight for 4 nights which we all enjoyed very much and we didn’t want to come home!
At the moment Macaulay is at the Chase for a week and then he is going into GOSH for some tests for 2 days. After that he’s going to Mencap for the day and we have a family day trip to the beach planned, so a busy summer for Macaulay.
Update 2nd July 2009
Macaulay has had a up and down month but is ok at the moment. We went to the hospital today for him to be fitted with his hearing aids so hopefully it will help him hear much better now. He was meant to go in to GOSH at the end of month but it has now been changed to August.
He is getting excited about going on hoilday soon. We are all looking forward to it so let’s hope the weather stays nice.
We hope you are all well and thanks for the post we’ve received.
Update 2nd June 2009
Macaulay went to the hospital about his ears and they wanted to do another grommet operation. I said no to this though, as they clearly aren’t working after already having it done 4 times, so he will probably have to have hearing aids again. We’re still waiting to go in to Great Ormond Street Hospital for his test.
He had a nice half term holiday as we all went to stay with my wife’s mum and we went to the beach for the day which was lovely. Macaulay has been getting angry a lot lately and hurting his younger siblings though.
Update 30th April 2009
Macaulay has been ok this month. He has been to his after school clubs and had a meal out to teach them independence etc. He’s also been to his respite centre and he went to a sports centre where they do different fun activities.
This Sunday (4th) he’s going to Crystal Palace football ground to watch the last game of the season by special invitation with 6 other boys from his school, because they were in a competition against other schools and they came third! At half time, the children from his school are going onto the pitch for a special presentation.
On the 11th of May Macaulay is going into hospital to have his grommets put in again. We are also waiting for an appointment for an endoscopy to see what is going on with his tummy.
Thank you for the post sent this month, Macaulay particularly liked his growing eggs.
Update 4th April 2009
Macaulay has had a ok month. We went to GOSH last week to discus his illness. His doctor is not too keen on doing the gastric pacemaker as he doesn’t feel it would work for Macaulay. They want to take him in to do an endoscopy to see what is going on so we’re just waiting now to get the date on when he is going in.
He had a great birthday and got a DS which he hasn’t stopped playing.
Last week he did a Panathlon Challenge with his school against other boroughs. They played different games like table cricket which they won and they came third out of six in the whole competition so they all did well.
This weekend he is at his respite place which he will love even more this time as his best mate is there too.
Hope you all have a great Easter and thank you for the post.
Update 6th March 2009
Macaulay has had an up and down month. He went for his test to see what’s happening with his tummy and it does not look good. The doctors are looking at more surgery to put a gastric pacemaker in his tummy to help it work better but they said it will take a lot of thinking and careful planning, so we’re not sure when it will all happen.
On a good note, Macaulay had a football match the other day with his school and he scored two goals.
He is also going to GOSH on the 18th for the day. We hope you are all well. Take care and thank you for the post this month.
Update 2nd February 2009
Macaulay has not had a good month with his illness and we are waiting for him to go in to hospital for some tests which should be this month.
There’s been lots going on as I had an operation on my back in March last year but I’m still having lots of problems and it is hard to walk some days with the pain I’m in.
On a sad note, Macaulay’s nanny passed away last week and she will be greatly missed.
Macaulay is excited today though as he has no school because we are snowed in – the snow is about 6-10 cm high.
Thank you to everyone who sent post during January.
Update 4th January 2009
Macaulay has had a great Christmas and he got lots of pressies. Thank you all so much for all his lovely cards and gifts.
We had a lovely time at the chase, they made it so special, and on Boxing Day we went to a panto which was very funny.
He has had a few bad days with his illness and as usual he has lots of hospital appointments coming up this year. At some point he has to have an 8 hour test to see how things are with his bowl.
I hope you all had a great Christmas and are well. HAPPY NEW YEAR TO YOU ALL!
Update 6th December 2008
Macaulay has not been to well this month. He has had a really bad ear infection and has had some obstructions. He had to have an operation on his ear on Monday to remove his gromit as the ear drum had grown over it and it is very sore.
Today, Saturday, he has gone to a Christmas party with the Chase which he was looking forward to. Jessica has gone on a sleep over with her rainbows group which she was also excited about.
Macaulay’s younger brother, Joshua, has now been diagnosed with Cerebral Palsy, which i thought he had all along. It has been a really busy month with taking Macaulay and Joshua to the hospital and my mum has just had to go in a home as her health has got bad, so i have had to look at some homes for her. She has gone to a nice one now and has settled in well. My feet have not touched the floor this month!
On the 23rd we are all going away to the Chase for Christmas which will be great and we are all looking forward to it.
Happy Christmas to you all and have a great time.
Update 1st November 2008
Macaulay has not been too bad this month. He’s had a bad ear infection but it is getting better and he’s been busy working hard at school.
He has started some counselling now to help him try cope with having a stoma which he has found very hard to cope with and to help with some anger problems.
He has gone with the Chase to the Top Gear Motor Show today and then after they are going to watch them film Top Gear.
We hope you are all well and keeping warm on these very cold days we are having.
Update 29th September 2008
Macaulay has had an ok month and has been busy back at school. He has had some bad days with his illness but is ok now. We went to GOSH on the 24th and all is ok there, but they are not making any changes at the moment. He will need to have an 8 hour test again next year to see how things are going and to see if they can rejoin his bowel. We are back at GOSH on the 7th and 28th of October, so it’s busy.
Grant, Macaulay’s brother, has just come back from being away with the chase on a 72ft yacht. They went to Yarmouth, Poole and Isle of Wight which he enjoyed.
Update 1st September 2008
Macaulay has had a busy summer going to his respite centre and out with his carer. We all went to the beach and had great fun and on the 27th Macaulay went to Southampton with Chase. They went on this really posh boat and had lunch in Portsmouth, and then they went to the lsle of Wight and got to drive the boat which Macaulay loved. He come home full of excitement.
It’s back to school next week; the holidays have gone so quickly. Macaulay has also got lots of hospital appointments coming up so it’s a busy September for him.
Thank you to all that sent to Macaulay this month and thanks to Post Pals for sending the out door bowling game, they love it.
Update 4th August 2008
Macaulay has had a few obstructions this month but other than that he’s been generally ok and well.
Macaulay has stayed in his respite centre and went to the beach with them. We have been to the park to play football and play on the slides and climbing frames. Today, Macaulay is going to his respite centre in Guildford and will enjoy that as he loves it and they have lots of fun things to do like arts and crafts, computers, play stations, out door fun area, and much more.
Next week we’re hoping to go to the beach then the following week we are going to the in-laws for a few days and hoping to go on days out with them too.
Thank you for the post and hope you are all well. Happy holidays to you, what ever you may be doing.
Update 7th July 2008
Macaulay has had an ok month with some ups and downs with his health but he is soldiering on as he usually does, bless him.
Macaulay has had lots of hospital appointments and dentist appointments to help see if his teeth can be straightened.
Macaulay has been to the cinema with his carer. He saw the new Hulk film, Kun Fu Panda and the new Hancock film staring Will Smith, which he enjoyed very much.
He has his sports day on Tuesday if the weather is ok and Macaulay is looking forward to the summer holidays. In August he’s spending a week in the CHASE which he enjoys too.
Thank you so much to those who sent Macaulay and his brothers and sister cards, they enjoy receiving them.
Update 6th June 2008
Macaulay has not been to well this month but is feeling much better now. He will be on Channel 5 news next Monday (10th) with his brother Grant as it is carers week. They are doing a report on young carers and he has been busy at school working hard.
Thank you for all the children’s post.
Update 14th May 2008
Macaulay is ok. He is having a few up and down days with his health, but seems to be coping. We received the results from his long test he had at GOSH and they weren’t good, they can’t re-connect his bowel at the moment as his bowel still isn’t well enough. Plus, they said if they did it now it would disturb his puberty etc so best to leave it until the bowel is 80-100% better. So, that was a bit disheartening but we are just plodding along as usual.
I hope everyone else is ok and thank you to all that have kindly sent Mac things.
Update 6th April 2008
Macaulay had a good birthday and he had lots of cards and presents. He’s happy now I’m at home after my stay in hospital. He has to stay in hospital on the 15th until the 17th for a test we have been waiting for, so fingers crossed it all goes well.
Thank you to all those who sent Mac birthday cards and letters and thank you to Julie for the present.
Update 29th February 2008
Macaulay has had an up and down month but is doing ok. He is happy as he has just been given respite in a place where he wants to go. He is still waiting to go for his test in GOSH which is getting very frustrating. He had a good half term though and enjoyed the rest.
Thank you for all his post this month.
Update 30th January 2008
Macaulay has not been feeling too well this month but is doing ok. He has to go to GOSH on Friday to have an operation on his stoma and he is hoping to go swimming as soon as he can go back in the water. He is still waiting to have his test to see what they are going to do with his bowel which is making him very frustrated.
Update 2nd January 2008
Macaulay has had a lovely Christmas. He got lots of presents from Father Christmas; he got a new playstation 2 and lots of games to play on it.
Health wise Macaulay has been well. Tomorrow he’s due to have a blood test and on Monday he’ having a small operation to correct the position of his Grommet as they have got lodged in his ear canal. They are hoping his hearing will improve after the operation but if not he may have to have his hearing aids back, as at his last hearing test he did quite badly bless him.
A big thank you to everyone who sent post and a special thank you to Julie for sending Macaulay the lovely gift.
Update 4th December 2007
Macaulay has had an up and down month and has had this horrible cold with a nasty cough. He’s still waiting for the test at Great Ormond Street and this is becoming frustrating as we don’t know what’s happening. He has been to have his hearing checked which is very bad and he’s got to have a small op done to correct his grommets and possibly have his hearing aids back.
On Monday the 10th Macaulay is going to the Crystal Palace annual Christmas Party which he is extremely excited about.
Thank you to everyone that has sent post this month.
Update 30th October 2007
Macaulay has had a up and down month. He went in to Great Ormond Street Hospital to have the test he has been waiting for, but unfortunately it didn’t go to plan as they had to insert a catheter from his nose down to his tummy and they couldn’t get the tube where they wanted it. They had to abandon the test so we are now waiting for them to redo it a different way, which we hope is soon. Macaulay is still finding it very difficult to cope with his stoma and having to be fed four hourly.
Thank you to everyone who has sent Macaulay something this month.
Update 30th September 2007
Well it’s been a busy time for us all, as we have just moved into a nice house at last!! Macaulay is very happy to be in a house now and he loves the garden as we never had before.
He has had his ups and downs with his illness and he will be going into GOSH on Friday to have a test so they can decide what they are going to do with him long term.
Macaulay has settled back into school ok and is working hard again. Macaulay is enjoying football again on Friday’s plus swimming.
Update 30th August 2007
Macaulay has had a good summer holiday with lots going on. He stayed in his respite center for 5 days and had fun there. He has had his ups and downs with his illness, but is getting through it. We are moving very soon to our new house which we are all looking forward to.
Update 4th August 2007
Macaulay has been in hospital this month to have his feeding tube put back in as when i went to change it i couldn’t put the new one in. He has had an up and down month with his illness but is staying strong. He is going to his respite centre for 5 days which he is looking forward to. He is still waiting to go to GOSH for his test but at the moment the machine has broken.
We are moving soon as the flat we are in has been leaking so we have now got a house which is being all done up for us. We should be in there in a month and it will be great for us all.
Thanks to everyone who sends me cards and letters.
Update 1st July 2007
Macaulay has had his up and down days this month. He has been to his respite centre this weekend which he loves. He has his sports day coming up which should be great if the weather is good. He has got a carer now who has him once a week for 3 hrs who does lots of fun things with him.
Thank to everyone who sent me post and thanks to Julie for my WWE kit.
Update 4th June 2007
Macaulay has had an up and down month again. He has been very busy too – he went to see the new spiderman film which he loved. He is still waiting to go into hospital to have his test. This weekend he has been at my mother in laws and he has great fun there. He played in the garden and went out for a meal – he really loved it and had lots of fun.
Thank you to everyone for my cards and letters as I enjoy receiving them.
Update 1st May 2007
Macaulay has had an up and down month with his illness. We are still waiting to go in for his test. His baby brother was in hospital with pneumonia but is better now. He went to his respite centre for the weekend and had fun. Thank you all for sending Macaulay cards/letters, he enjoys receiving them.
Update 31st March 2007
Macaulay has had an up and down month with his health. He has had a few obstructions which give him an awful lot of pain and discomfort but he seems to be well again now. Macaulay is still waiting for a test to be done at Great Ormond Street. They did have a date but there was no bed so we are still waiting.
He had his 12th birthday this month and got lots of lovely cards and presents. He was also in a competition with his school this month and they came 4th which was great!
Thank you to everyone for all my lovely cards and gifts. Thank you also to Julie for the notes and messages, as they make him smile.
Update 2nd March 2007
Macaulay has had an up and down month and we are still waiting to have his test to see what they are going to do with him.
He has been getting very angry lately as on a sad note, his great granddad past away on Monday, which is a great loss to the family as he was a much loved member.
Macaulay is still not copping very well with his stoma bag, it has come off every day this week and made his skin very sore. Thank you to all that send cards to Macaulay, it makes him happy receiving them.
Update 8th February 2007
Macaulay has had some ups and downs with his health and he has started counseling at GOSH to help him cope with his illness which is great.
He is still waiting to go in GOSH to have a test so they can make up their minds in what they are going to do with him and we are also trying to get a shower fitted to make it easier for him.
Thank you for all his post.
Update 30th December 2006
Macaulay has not been feeling too well lately but is feeling a bit better now. He has a busy new year with hospital appointments and its crunch time to see if his bowel is better so they can rejoin it, but his doctor does not hold out hope that they can.
Thank you to everyone who sent me a card and to Sue for the lovely Christmas presents.
Update 30th November 2006
Macaulay has not been feeling very well lately because of his pseudo. He has a busy december with appointments and on the 7th he has to go in to hospital to have his feeding tube changed because he has not been getting on with it. On the 19th he has two appointments at GOSH.
Eleanor was born with several life threatening conditions – Muscular Dystrophy, Cardiomyopathy, Severe Dystonia, Peripheral Neuropathy, Arthrogryposis and Multicystic Kidney Disease.
Eleanor, (Elle as her friends call her), has constant therapy and trips to the hospital several times a month but still tries to do everything she possibly can.
Eleanor uses an electric wheelchair as she can only walk a few steps and is due to have foot surgery soon. Due to her deterioration, Eleanor will be having brain surgery in the next few weeks in the hope of easing some of her symptoms and delaying the de-generation of her condition.
Although she gets breathless and very tired, Eleanor tries to join in with her friends and has extra feeds through a gastrostomy tube to help her get more energy (she does love eating normally though).
Eleanor struggles with most daily activities as she has muscle weakness and erratic body movements but she does everything with a smile.
Eleanor now has a CaringBridge website at: http://www.caringbridge.org/visit/eleanorgabriel
Update 21st January 2016
We have decided that Elle should move on from Post Pals as she is doing so well.
Update 8th August 2015
Eleanor always finds the summer holiday difficult, as she wants to do the things she see’s other children enjoying, but her pain is preventing her from doing much. She is listening to lots of music instead to make her smile.
Eleanor would like to say a big thank you to Kym who sent her a box of Sunshine which had a lot of gorgeous personalised items in that clearly were made with a lot of love and care.
Daniel would like to say thank you to Em from Isle of Man. He said you make him so happy when he gets your letters and parcels.
Both Eleanor and Daniel say thank you to Post Pals for their lovely goody bags.
Update 23rd July 2015
Eleanor is doing OK at the moment. She is getting tired quickly but luckily being a teenager means she can just chill out on her iPad and listen to music. We are awaiting results from her sleep study to see if her oxygen has reduced any more during the night, but her heart is doing well on her current medication.
Thank you so much for our amazing paper cuts, they are taking pride of place in Daniel’s room and our living room. We will take a picture of them!
Also a massive, huge thank you to Connor for Daniel’s birthday card. It makes his day when he can see it’s from you Connor. You are an amazing and caring young man.
Update 31st May 2015
Eleanor is still having lots of tests and investigations at the moment. Her pain levels seem to have improved with new medication, so hopefully she will be comfortable for the forseeable future.
This month is going to be a busy one with lots of travelling and hospital visits.
Update 6th May 2015
We would like to say a huge thank you to Em from Isle of Man who regularly writes to both Elle and Dan and makes them smile so much.
Elle’s health is yo-yoing at the moment. She is generally doing ok but is finding things harder and more tiring because her speech and concentration is affected. She cannot go horse riding anymore so is now more into her cats and dog. She loves watching Glee and Pretty Little Liars on Netflix and has got in to watching teen films with her sister Georgina.
Update 21st March 2015
Eleanor is going into hospital at Kings on Monday for more surgery, this time on her chest as her dbs box is not working. We are hoping to be transferred from Kings to Demelza house children’s hospice on Wednesday for recovery and home Sunday.
Elle is still in love with One direction and is very music orientated now that she is no longer mobile at all.
Dan is now becoming very grown up (or thinks he is!) and he is still in love with Pokemon/Digimon and things like adventure time/regular show from Cartoon Network, but is now also very interested in reading and is enjoying things like physics at school.
Update 2nd August 2014
Elle has had yet more tests over the last couple of months and her oxygen seems to be dipping at night, so more investigations into that are underway. We also saw Elle’s orthopedic surgeon as Elle has been in lots of pain and unable to even transfer out of her chair. Unfortunately he has discovered that both hips are out of their socket and one hip has worn considerably. This means we are now due to go on another London hospital trip in the next week or two for Elle to have more tests under anaesthetic to see what kind of operation they will need to perform to help her. We were also contacted by Elle’s geneticist a few days ago who said they want to test for another rare gene. So all in all, a busy few weeks in our house.
Elle is getting through the pain by doing her usual thing of listening to music while bossing everyone about!
Georgina (Elle’s sister) and her friend Hannah have organised a charity event for Post Pals which is on the 9th August and even printed flyers, bless them. Hopefully they will raise a lot.
Update 4th April 2014
We have a few London hospital trips coming up for Elle to look into her further movement/mobility deterioration over the last year, but she is otherwise doing well.
Elle is very much enjoying her music, as now that her mobility is greatly reduced and she is wheelchair bound, she is spending her time listening to all the popular chart music. She is now also into watching Glee as loves musicals and wants to visit a stage show sometime in the future.
Update 2nd December 2013
Eleanor is coping very well with her loss of mobility, we are having to reduce a lot of things she used to do and get her to rest more but she is as smiley as always.
Eleanor had a lovely package sent to her from 1st Clifton Brownies. The parcel contained 24 numbered envelopes to be opened each day in December. Elle has opened two so far containing a lovely homemade hama bead star and a flag with her initials on. What a fabulous thing for a Brownie group to do. Eleanor will be enjoying her handmade advent calendar and we will be taking pictures to make into a collage for the Post Pals website. Thank you so much 1st Clifton Brownies for a whole advent of smiles!
Also a big huge thank you to Connor for Daniel’s parcel, he loved it, you got it exactly right! And thank you for Zara and Georgina’s yummy chocs!
Update 28th September 2013
It has been a difficult few months for our family as Eleanor is deteriorating, luckily at a slow rate, but still enough to be upsetting. Elle now cannot walk at all and a recent scan showed damage to her left hip.
After several assessments in London, Eleanor’s consultant has come to the conclusion that her tiredness and general weakness is due to the degenerative nature of her condition and was unfortunately expected when she reached pre-teens. We have now been advised to be prepared for the future and currently looking into more support and equipment for the home.
Alongside this, Eleanor’s mum has been poorly and is about to have several surgeries. Georgina, Eleanor’s older sister, is being a completely fabulous young carer and helping to care for her autistic brother while mum and Eleanor have their various hospital trips.
Thank you to Connor and Karen. Daniel loved receiving post from ‘his mate Connor!’ And thank you Laura J as Eleanor was so impressed with her 1D Chocolate, she was giggling for ages.
The support that Post Pals gives to the whole family, not just the named child, warms my heart. Our family will always be grateful and appreciate every single piece of post sent, no matter how small.
Update 18th September 2013
Had bit of bad news today. Elle’s orthopaedic surgeon told us that her hips are damaged, the bone has grown deformed, and so she has now got to reduce her crawling and will be wheelchair bound pretty soon and need an intensive operation. We’re so sad, she loves her independence.
Update 3rd April 2013
Georgina (Eleanor’s older sister) would like to say thank you so much to everyone for all the post she has received since Eleanor has been a Pal, but feels that now she is older she would like to stop receiving post so that other children have a chance at smiling as much as she has from it!
Update 1st March 2013
Eleanor is settling into her specialist school very well and it has done her confidence the world of good. She seems to be a little less tired as she is not trying to keep up with all the able children like she was before.
Eleanor’s condition continues to deteriorate, although thank goodness it is very slowly. She is no longer walking at all and becoming increasingly dependent on equipment but is trying as always to be as independent as she possibly can.
Eleanor is absolutely obsessed with One Direction now, especially Harry Styles, and is more into listening to music and playing on a laptop now. She’s becoming more teenage-like daily! She also loves to watch Pop girl, Sabrina the teenage witch, Mortified and Disney programmes, Victorius and i Carly.
Post Pals has picked us up and made us smile when we felt that life had got too much, please never underestimate the joy you can bring by supporting Post Pals.
Update 9th October 2012
Eleanor started to deteriorate a few months ago and now has unfortunately lost her ability to walk and stand unaided. She is taking things slower as she is becoming tired very quickly so now spends most of her time listening to music or on her computer. She was due in hospital for a few days of extensive tests to find out why she is deteriorating at such a rate but unfortunately the appointment has had to be cancelled and is re-scheduled for the end of November.
Eleanor now attends a specialist school as she was unable to keep up in mainstream, but she is very happy and has made lots of new friends.
Elle’s main interest at the moment is X Factor, she is a huge fan and loves everything about it. She is getting more and more into music now and dreams of meeting Cher Lloyd but also loves Katy Perry, Little Mix, One Direction, and Jessie J. She is also a big fan of Disney channel and Pop Girl shows like Good luck Charlie. She is even trying to make her own videos using her phone camera!
Update 12th March 2012
Eleanor is having some tests to find out why her condition seems to be deteriorating. She is very lethargic and struggling a lot but is still being a cheeky little madam!
Thank you for all our post and a special thank you to Em from Isle of Man for sending all 3 children post regularly – lots of smiles created by one person.
Update 15th October 2011
Eleanor has had a really difficult and busy few months; she had her operations on both feet and spent the whole of the summer holidays in plaster casts… which she charged people to sign for Post Pals!
In the last few weeks Eleanor has had constant trips to hospital in London and is struggling a bit with tiredness and breathlessness, but is still carrying on doing all the things she loves with a smile!
Due to Mum being quite poorly and in out of hospital too, it has been quite hectic for the family, so apologies for late replies.
Thank you so much to Denise Cannadine for the Worst Witch books. Eleanor is still X Factor obsessed, but is also now enjoying her sister reading her Harry Potter and the Worst Witch. She is really getting into music too and is a huge Katy Perry fan!
Update 5th June 2011
Eleanor has had some deterioration over the last few weeks and has been struggling quite a bit, so we are back and forth to Evelina children’s hospital for heart tests, neurology etc.
Elle is going to have more surgery on 26th July. Her feet have become severely deformed and we cannot get shoes to fit her anymore so they are operating on her feet to make her more comfortable. We are unsure if she will be able to walk after the operation, but she has proved us wrong before so fingers crossed!
Elle also has a new obsession! Talent shows… Xfactor, Britain’s Got Talent etc, so if anyone wants to write to her and talk about these types of shows she would love it.
Daniel is doing well at his new specialist school and has a real thing for Dr Seuss and Harry Potter and Lego at the moment. Georgina is being a real star and coping with all the stress really well. We had a few tears the other day when we were staying at Demelza House because I think she has just begun to realise what a hospice is, but she is getting support from the Demelza House team. She is really into story writing and reading and has written her own novel!
We will be coming to the Post Pals party on the 25th June and can’t wait to meet you all!
Update 7th April 2011
I would like to say a huge thank you to all at Post Pals for the immense support they have shown us during these hard couple of months.
Update 28th January 2011
Daniel received a card and a pen with an alien/monster topper today. He is so pleased with it, he has been carrying it around all day and telling everyone it’s called a monster boggle pen! Just goes to show how much just one thought from someone showing they care makes a child smile! The card also had pictures of cows on it and a lovely description inside of the ladies (Lynn) children and their dog. It was such a lovely thing to brighten Daniels day. Thank you Lynn, Holly and Jack xxx
Update 9th January 2011
Eleanor is doing well. She unfortunately missed her last review at hospital but will catch up soon I’m sure.
Update 8th December 2010
Eleanor had a bit of a blip after her operation and kept collapsing. After being put on some new medication she seems to have perked up and we are going to see her doctor on 14th December to see how things are.
We have had a few low moments this month but we’re getting into the Christmas spirit now and would like to thank everyone who has sent post! You can be having the worst day imaginable, then get home to some post from Post Pals and realize you can still smile as people do care!
Update 19th October 2010
Just to let you know Eleanor has had her brain surgery and is back home again. We thought she would be in hospital for quite a while but it was decided that she would be better off recovering at home away from bugs etc. We just got home today and she is doing well. Her Post Pals pillow case has been a great comfort to her.
Update 11th October 2010 (10pm)
Elle has had her surgery and is doing well. She is in and out of consciousness but being very brave.
Update 11th October 2010 (2pm)
Eleanor G went down to surgery at 8.30am. We are now twiddling our thumbs waiting and hoping she will make it through.
Thank you so much to everyone who has sent her post. YOU GUYS ARE ALL AMAZING!
Update 7th October 2010
Elle is going into hospital on the 11th October to have brain surgery. She will be in Kings College hospital for 1-2 nights and then will be transferred to Evelina children’s hospital where she will be recuperating for a couple of weeks. She will have quite a bit of recovery to do at home as well before she can go back to school or join in with her friends but we are hoping the operation will slow down the degeneration of her condition and give her some better quality of life.
Elle is very nervous but had a great time on Sunday when several people got together for a sponsored head shave to support her when she has her hair shaved off. Eleanor loves her amazing smiles that come from miles!
Daniel and Georgina have received some beautiful home-made cards, thank you so much to everyone for thinking of the siblings too, they are going through such a tough time at the moment and it is lovely that they are thought about as well. Elle would like to say a huge thank you to everyone who has been sending her letters, she loves reading about your day and seeing pictures of pets etc, it really has made this time in the run-up to her operation much happier. A huge thank you for the rainbow bandanas!!! As Elle will be having her hair shaved on Monday this will be her prized possession for a few weeks!
Also, a while ago Eleanor was sent a cuddly horse with a voucher to name a star; it was such a lovely thoughtful gift that really made her smile!
I would encourage anyone who wants to fundraise for a charity to pick Post Pals as they do so much for many many families!!!
Update 30th August 2010
We are seeing Eleanor’s brain surgeon at Evelina on Friday and Eleanor will be shown the implants that will be going into her brain and assessments will be made ready for surgery.
Eleanor is taking her Build-A-Bear everywhere with her, thank you so much Dan and Jen, she is even looking forward to taking it to hospital. She has named her bear Cinderella!
Eleanor is going to put a map up in her room so she can mark off where she gets post from, she is very excited that she has received post from different places and can’t wait to show her friends.
Update 22nd August 2010
Eleanor will be having her brain surgery on the 12th October. She will be at Kings College Hospital on the 11th for admission, have the surgery on the 12th, and then will be transferred from Kings College to Evelina Children’s Hospital on the 13th for a 2 week stay and then further recovery at home. She will be having her head shaved on the 11th too, which is quite scary for her.
Lewis was born on the 28th February 2004 and everything went really well. Lewis grew and developed normally, although he started sitting up a little late at around 7 months and started walking a little late at around 17 months. At around 6 months Lewis started having Reflex Anoxic Seizures – holding his breath until he turned blue and passed out. He grew out of these by the age of 4. By the time he was 2 he was walking absolutely fine, just like your average 2 year old.
Not long after his 2nd birthday he started to limp on his right leg. This was diagnosed as irritable hip. After around 8 weeks he was able to walk again normally. Mid April 2006 he stopped walking completely and would only crawl. In May 2006 we saw a specialist and Lewis started on physiotherapy and a whole bunch of tests. In July 2006 Lewis had his first epileptic seizure. In August 2006 he had an MRI. In September he had a second epileptic seizure. Whilst we were in hospital for this second time, Lewis had ECG and EEG and several blood tests. His EEG came back abnormal. In October Lewis started to have regular epileptic seizures and was put on a treatment program.
From around September 2006 Lewis’ condition worsened considerably and he became unable to sit up unaided. By November 2006 he could not sit or even support his own head and physically all he can now do is lie on the floor. He now cannot use his hands at all and has to have a special chair to support his entire body and to try and keep his spine and hips in good position to prevent scoliosis and hip displacement. Unfortunately we were a little late finding out that this was so very important so Lewis now has quite severe scoliosis, rib and spine rotation, and hip displaysia. In November 2006 Lewis went into hospital for a lumbar puncture and tissue and muscle biopsies as the doctors have still not been able to diagnose the condition Lewis has that has caused his physical condition to deteriorate. He has since then had many more tests including a very detailed 3-teslar MRI which came back with the same results as usual. Normal.
In 2011, Lewis remained undiagnosed. An MRI scan did show some deterioration in his brain (cerrebular atrophy) which the doctors believed was post-infectious but they didn’t know what infection caused it, or when! They said it looked like what someone would have if they had had chicken pox! More frustration!
Lewis re-started a course of therapeutic antibiotics again in May 2010 as he was on these for 6 months in 2009 and we did see improvements in his head control, he tried to speak, and he tried to reach out for things effectively. Unfortunately, in December 2009, we had to stop the treatment as Lewis was fitting every 10-12 minutes and we couldn’t work out why. He spent a lot of time in hospital leading up to Christmas and finally came home on Christmas Eve but didn’t really recover fully for several weeks. We finally discovered that changing his antibiotic was the problem. One of the antibiotics Lewis was taking had raised the levels of anti-epileptic medication in his liver, so when we took him off that antibiotic to start him on another, his levels dropped dramatically!
In 2013 Lewis was admitted to hospital with a severe stomach bug. This resulted in intubation and transfer to ICU. It was discovered his bowel and stomach and abdomen had grown together due to an error in the replacement of his stomach tube in 2010. The tummy bug he had caught allowed the contents of his bowel to be forced through the ‘tunnel’ into his stomach. This required surgery but in Lewis’ weakened state and with a mix up over medications, Lewis ended up remaining in ICU/HDU for six months with collapsed lungs, several episodes of status epilepticus and various infections. His lungs could not cope with all this and in October 2013, Lewis had a tracheostomy tube fitted to allow him to breathe. He also requires a ventilator to assist his breathing. He has 100 degree plus scoliosis and dislocated hips (exacerbated by restricted positioning and not being able to have regular stretches or physio whilst in hospital).
Lewis also suffered a shoulder fracture whilst in ICU due to particularly violent seizures. This has never healed and the bone has dissolved so Lewis is also in constant pain from this.
Finally, on 8 July 2014, Lewis was diagnosed after over 7 years of being undiagnosed. Lewis has Neuronal Ceroid Lypofuscinosis on the KTC07 gene. NCL is also known as Batten Disease. There is no treatment or cure.
Our boy is SO brave. Every single day he deals with unimaginable pain and discomfort and yet still he smiles. Lewis is an incredibly happy chap, despite all his problems, and he loves to spend time with the other children and interact with them as much as possible.
Update 1st January 2017
Like a lot of Post Pals families, there has been a lot of illness here. Not only Lewis, but mummy, daddy, close family members and nurses!
Lewis has been struggling with some very painful issues with his hips, spine, digestive system, his seizures, and coughs and colds. He still smiles and laughs though – they are just a little bit harder to find.
Lewis has had some incredible post in 2016 and now (hopefully) everyone is recovering, we will be able to go through the return addresses and personally thank every one of you.
Now we are in 2017, Lewis has his 13th birthday in February. Lewis’ condition means his life expectancy is 10-12 years old so it’s very worrying for us as we are on borrowed time.
All I can say to you all is how special and precious and truly joyous you have helped to make these years with Lewis and what wonderful and lifelong friends we have made on our journey. Let us hope Lewis can prove the numbers wrong and stay with us this whole year.
Much love to all, especially the amazing young women at Post Pals Central
Update 12th October 2016
Lewis is doing ok at the moment. His seizures are gradually increasing, and his bone/joint pain is intermittent but each time he has a bout of pain, it seems to hurt him more than ever. Heartbreaking to see the pain in his eyes. But despite all that, he still smiles and laughs and his Trachy has developed a small leak (air can pass the tracheostomy tube and pass the vocal cords) which means we get little tiny surprise bursts of sound from him – it’s so amazing to hear his beautiful voice, even if it is just for a split second.
It is Lewis’ step sister’s birthday this weekend so we are looking forward to going to her birthday party. Poppy will be 6!
Our rescue kitten Benjamin is growing fast. And another rescue cat which adopted us last year (Arthur) is recovering from being lost for 4 months and coming home looking like a skeleton cat. Lewis loves having the animals around him, they often make him laugh, especially when they are making a lot of noise!
Lewis is loving receiving postcards and now the weather is colder, we shall be spending more time in his sensory room where all his postcards decorate the walls and ceiling.
Lewis has a lot of toys he cannot play with and so we are going to sort through them gradually and hope to send them to fellow pals.
We have the Alice in wonderland post pals party to look forward to next year as well x
Update 17th August 2016
Hello! It’s always scary to say we are doing fine, but we will be brave and do it! Lewis has been stable for a couple of months now. The odd seizures, but nothing we couldn’t manage at home. The weather has had its moments of being too hot for Lew Lew but it has meant afternoons indoors with the fan and CBeebies so he hasn’t complained! Lewis has received some beautiful post this past couple of months from our wonderful post pal friends – his postcard ceiling in the sensory room is looking amazing!
On 27th August Lewis is having a party arranged as a wish from Rays of Sunshine Charity. We have lots of children as we wanted it to be a party for lots of children so if you are local to Doncaster and would like to pop along, please send a message through Lewis’s Facebook page or through Post Pals website.
With the passing of time, Lewis is getting older, which is scary because it means we are running out of time, but it also means we are putting even more effort in to making amazing memories with him. As Lewis’ classification of NCL/Batten Disease is so rare, he is the only child in the world of his age known to have this mutation so we don’t know what will happen or when. There is one other little boy we know of in India and he is much younger than Lew Lew. He’s also absolutely gorgeous just like Lew Lew!! Every new day with Lewis is a gift for us to treasure.
Love to all our friends who are now like family. Any post received with a return address will eventually be replied to, sorry if it can sometimes be quite a long while!
Update 5th July 2016
What an amazing month June has been. We got to go to two spectacular parties. The first was with Post Pals and I cannot describe how special it was, and what an amazing day we had. We met old and new friends, we met Post Pals we have been communicating with for several years. There was a lot of hugging and a lot of love! The party itself was quite simply the best party ever! We all had such an amazing time – it was truly a day of a lifetime.
Lewis hasn’t been too great over the past few weeks, with seizures and generally being under the weather, but we have carried on taking care of him and doing all we can to make him smile! He always loves receiving post with his name on! Lewis now has a platform outside his bedroom patio doors so that when he is particularly poorly, we can wheel his bed outside on to the platform so he can still enjoy time in the garden and fresh air.
I was clearing out the spare bedroom just this week and I found a big pile of Lewis’ Post Pals postcards, so they are now in the sensory room on display with the rest. Some of them go as far back as 2010, so Lewis and I will be replying to the postcards which had return addresses on. They all look so amazing in Lewis’s sensory room – such a bright and colourful way to decorate the walls and ceiling!
Update 3rd May 2016
Lewis and I have received some lovely post this past few weeks and I have kept my cards out on display – they really do mean so much.
Thank you to Post Pals for the butterfly growing kit. We aren’t ready to start ‘growing’ yet, but will take photos once we do. Lewis also received some super soft toys from Post Pals. Lewis loves puppets so our collection is getting very exciting for our puppet shows to help Lewis laugh! Also he loved his deer blanket cuddly and his wobbly head Fraggle!
A particular thank you from me to Bev for the lovely card which made me chuckle!
Lewis has been unwell quite a lot over the past few weeks, including a hospital admission for uncontrollable seizures. We manage almost all of Lewis’ medical care at home. Sometimes we need some extra help, but since his recent admission plans are now being discussed to be able to give Lewis IV medication at home.
Lewis has been in a great deal of pain with his scoliosis and hip problems so we are trying to balance Lewis’ pain management without losing the essence of Lewis in sedation.
Lewis has very much enjoyed spending time with his new step-sister, Poppy, who is 5. Poppy is busy trying to teach Lewis’ dog, Phoebe, new tricks, which is always fun!
We look forward to seeing everyone at the Post Pals party in June . Poppy will be coming too which will make Lewis very happy.
Update 13th April 2016
Lewis has had a chest infection which needed antibiotics. The antibiotics caused him a very upset tummy which he is just getting over now, a week after finishing the antibiotics.
On top of that, the past few nights Lewis has been having very bad seizures which have now spilled over into the daytime while Lewis is awake (mostly his seizures only come when he’s asleep). Today is a battle to keep him out of hospital as he has had his rescue medication but, so far, it has been ineffective.
Hoping Lewis can fight this and we can stay at home. We have HDU at home so admitting we have to go to hospital is pretty serious for us.
Thank you for all Lewis’ amazing post. We will take time to thank everybody once Lewis is feeling better and things can go a little more back to normal.
Update 16th February 2016
Well January started off really slowly, but now we find ourselves in the second half of February, and almost to Lewis’ 12th Birthday! This is pretty spectacular as when we received his diagnosis of NCL / Batten Disease, they said 11 years old was the expected life expectancy. So to be getting to 12 is something to celebrate! We are having a kind of party in the local Pizza Hut and so far 44 people are coming! (they are all paying for themselves, though!) And we have arranged a surprise visit for Lewis (but, shush, don’t tell him!) of Upsi Daisy and Iggle Piggle from In the Night Garden!
It seems that everyone around us has succumbed to a horrible flu-like cough and cold, so we are trying very hard to avoid getting that in our home. Something like that can be a massive problem, not only for Lewis and trying to keep him away from hospital, but also for myself and his nurses who need to be fully fit 24/7 to look after him properly!
Thankfully, since our last update, Lewis hasn’t had too many seizures (everything crossed, as usual!) and I’m pretty sure he’s having a growth spurt. I’m going to have to sort out his clothes as a lot of them don’t fit his long legs anymore, and some of his t-shirts are just too short! It’s lovely though to know he’s growing, because, of course, that gives us hope that he’s doing well at the moment!
Sadly, just today, our eldest cat passed away. She was almost 17 years old and she died in her sleep. We still have 6 cats left and, of course, our crazy puppy, Phoebe, who was a year old the day before Valentine’s Day! Thank you so much for Lewis’ lovely Valentine cards! He was very much spoilt!
Post Pals cards and gifts have already begun arriving for his birthday at the end of this month, so they have been put safely away until the special day!
We will be taking lots of photos at Lewis’ birthday party, and thanking everybody for your lovely cards and gifts! Could I just ask, people who send Lewis post – please could you put a return address in as we are now more organised here and Lewis is enjoying helping me to reply with personal cards and letters as part of our home education!
Update 3rd January 2016
What a busy December! Lewis had two interactive Post Pals advent calendars to open, from Nanna Lyn and from Grace & Henry, plus a picture advent calendar from Bev, and a WOW advent calendar from Post Pals which we had so much fun with.
Lewis received such lovely elf gifts and we have tried to individually thank everybody for the love and kindness shown to us this Christmas – even I got some gifts which were so lovely and a really precious surprise!
With Lewis, being busy seems to automatically mean being unwell. He has had a bad chest early in December, and then unexplained (so far) temperature spikes and random seizures. He is still unwell but we hope he will start to pick up soon.
We look forward, as always, to warmer weather so we can get out and about more.
Lewis no longer attends school due to his illness so we do educational activities at home as much as possible.
Thank you for another wonderful Post Pals year with Domino (Dottie’s litter pup), the monthly projects, and the wonderful friends we now consider family who we made through post pals.
Update 13th October 2015
Hello. Well, here we are in October. What happened to September? Lewis has been stable since his seizure scare last month. A tweaking of medications has sorted him out for now so hopefully goodbye to nasty seizures for a while. We are now getting settled into our routine together. Since Lewis’ care package reduced from 24/7, Lewis and I now get to spend from midday until 10pm each day on our own. We have fun trying to think of things to do each afternoon, ranging from baking, making cards, painting, watching funny music videos on YouTube, snuggling on the sofa with a family movie, or, if the weather is nice, getting outside with crazy Phoebe puppy in the garden.
Since Lewis’ care package has been reduced, its been a lot more difficult to get out of the house, but a lovely friend who lives right down south near the sea (Dorset) has very kindly donated her daughter’s specialist car seat to us so I can get to take Lewis out on short trips in the car on my own. Can’t wait to get that little bit of freedom back! Before Lewis had his tracheostomy and ventilator, we were always off out and about together!
We have been planning what we will be doing for Hallowe’en, Bonfire Night and, of course, Christmas! We have to plan these things early and then hope that Lewis stays well enough to actually do the things we plan! We are being brave this year and spending Christmas away from home with friends. As you will know by now, we avoid hospital at all costs! All of Lewis’ medical care is done at home. If it’s bad enough to go to hospital, it’s bad.
We have a huge fish pond in our garden which we were able to completely revamp with the help of donations from charities. It is a special sensory pond which Lewis loves. Now the nights are drawing in we get to see the twinkly lights much earlier – a good side of the darker nights coming with winter! In the summer, we put Lewis’ two fish tank fish into the pond to see how they would cope with the bigger pond fish. Well, we are pleased they have grown really fast and are four times the size they were when they went in! They are called Makka and Pakka (after my favourite TV programme, In The Night Garden). We hope they will all survive ok when the really cold weather comes.
We are hoping to be able to go and visit one of our Post Pal friends soon as well, Lewis’ health willing!
Thank you to Lewis’ Post Pals for all the amazing gifts, cards and letters he has received since our last update. Don’t forget, we are decorating the ceiling of Lewis’ sensory room with postcards! Also, if you send post to Lewis, please please put a return address or email in so we can reply. We take a while to reply, but we do get around to it eventually!
Update 24th September 2015
Hello. So the summer is over and we are looking forward to Halloween here now! We are enjoying the latter sunny weather and Lewis is spending a lot of time out in the garden around his sensory pond. We have taken advantage of the shops selling off all their summer garden lighting and ornaments to make Lewis’ sensory pond even more spectacular, and of course because its now getting darker earlier, Lewis can enjoy the lights before bedtime.
Healthwise Lewis is pretty stable. He has had some of his anti epileptic medication increased because of his seizures getting worse at night, and he’s also had the pressures on his ventilator increased to help him breathe better when he’s asleep at night too. As we come into the colder weather though, Lewis’ health is at more risk of deterioration because of the winter bugs like flu and RSV, so we have to start being extra careful with him, especially around people, or in areas where bugs will be flying around! This can make life pretty boring, so we try to do lots of fun activities at home as much as possible without wearing Lewis out.
We are preparing our outfits for Halloween again and we have decided we will be characters from the film Corpse Bride. We love to have trick or treaters visit us on Halloween night (only the treaters though, no tricks please!) and so we decorate the garden to encourage children to visit, and we have the big patio door open and wait patiently with a huge bowl of sweets and treats!
We still do wonder if Lewis will ever have to not have his tracheostomy, but we know that in reality, it has saved his life and that it will not come out as he relies on it too much, more and more as time goes by. So although its horrid and it makes life so very difficult, it means that Lewis is here with us to enjoy and to love. And as always, he still manages to wow us with his gorgeous smile and his amazing laugh (silent laugh because his tracheostomy tube blocks his voice). It is the best thing ever to see his eyes crinkle up and his shoulders shake when he sees something super funny – usually Iggle Piggle and UpsiDaisy sneezing, or Big and Small playing on the swing!
Thank you to the amazing ladies at Post Pals for making it possible for us to reach out to such a wonderful group of people (Post Pals volunteers and friends) and for the wonderful friends we have made on this journey so far. We are often slow at responding to Lewis’ wonderful post, but if you give a return address or email we do get there eventually! Promise!
As you know, Samuel, Lewis’ older brother, is 22 and at university now, but when he was younger he loved being part of Post Pals too as a sibling.
Update 14th August 2015
Thank you this month to Post Pals for the very cute knitted doll! Also, for the lovely cards and gifts Lewis has received. We would like to say a really huge thank you to Teresa and Clive (who we met through Post Pals) and who were able to come and spend the day with us for Lewis’ Naming Day last month.
So many children we know have passed recently and there have been so many funerals. This set me to thinking that people pull out all the stops to attend a funeral, especially that of a child, but they often don’t make the same effort to visit when the person is still alive. I wanted to celebrate Lewis while he is still here and so I came upon the idea of a Naming Day to bring everybody together.
We had a great turn out and it was an amazingly special day with so many memories made. Friends from all over the UK came to the day and made it extra special. Meeting Teresa and another friend we had met online (but never face to face) was so wonderful. I am so happy so many people got to enjoy Lewis’ special day WITH him, rather than everybody coming together for the sad occasion when Lewis leaves us to become an Angel. I would encourage parents of terminally ill children to do this as although it is incredibly emotional, it is a happy day of celebrating. It was wonderful.
Lewis is pretty much stable health wise (everything crossed as I type that!) although his lungs are struggling day to day and we do have difficulties with his SATs (oxygen levels) every evening now. Lewis’ eyes are sore all the time now from straining to see his favourite DVDs and TV programmes, but he still smiles. Sometimes he even treats us with his amazing laugh, which is silent because of his tracheostomy tube, but his shoulders shake and his smile is so huge and his eyes light up!
Lewis’ puppy Phoebe is six months old now and still as cheeky – it is always funny when she tries to lay on Lewis’ lap as she did as a tiny puppy, because now she just doesn’t fit!
Update 23rd July 2015
First of all, thank you for the amazing paper cut framed gifts we received via Post Pals. We were so overwhelmed, they are beautiful and will be treasured forever.
Secondly, thank you for all the lovely cards and letters and of course our regular Dottie newsletter which we love to receive and always know who it’s from by the giveaway paw prints on the envelope!
Lewis is doing ok. He is having a spate of seizures again. With Lewis’ condition, we will never know if this cluster of seizures is ‘the one’ or if this infection of illness or deterioration is ‘the one’. It can make life very stressful indeed which is why we make sure to squeeze every drop out of every day.
Lewis’ puppy, Phoebe, is growing fast and is very, very cheeky! When she was tiny, she used to like sleeping next to Lewis. She is a big girl now and still likes to sleep next to Lewis but is a little bit too big now so it’s quite funny to watch her trying!
This weekend Lewis is having a naming day. This is like a christening but is non religious. The reason behind this is that we wanted to bring as many people together as we could to celebrate Lewis so that he can enjoy them too. As you know, Lewis’ illness is terminal and so one day everybody will get together to say goodbye. I wanted all those people to get together for a happy time so we have friends giving readings and we hope it will be an extra special day. In true Lewis style, though, he’s starting to get ill!! I hope so much that he is fine for Saturday as we have guests from as fat apart as Scotland and Taunton! It will be busy and the preparation is really stressful but we hope it will all be worth it and that Lewis will have an extra special day.
Lewis’ brother Samuel has been home from university for the summer but is going back at the beginning of August to do his Masters. It’s been lovely to have him home and we will miss him loads when he heads off again.
Thank you again to all Lewis’ post pals in UK and overseas. We do try to get around to sending personal replies in the post if you give a return address or email, but sometimes it takes a few weeks!
Happy summer to everybody!
Update 7th June 2015
Lewis has another chest infection and so is on antibiotics again, but otherwise he is feeling quite well and is very smiley and happy!
He is enjoying the sunshine and has had some surprise visitors this month (May) already, particularly Jan and family from Taunton in Somerset, and our very own Post Pal Leona who is all the way from Scotland! It was amazing to meet Leona after all these years of her being a regular Post Pal for Lewis! A very overwhelming and emotional day!
We are really looking forward to coming to the Post Pals Party at the end of this month!
Update 30th April 2015
Lewis has 24/7 care by qualified carers but due to illness, maternity leave, going off to college/university and childcare issues, Lewis’ care package collapsed in March. Since then it has been very stressful as Lewis’ medical/clinical needs are way too much for one person (in other words, me, his mum). For a few weeks we had emergency cover by agency nurses and finally in mid April we started with a new care agency called Thornbury. This means we have been having a qualified nurse and an unqualified (training) healthcare assistant doing 12 hour shifts around the clock. Consequently, the house is always full and busy with training and teaching new people Lewis’ routines and needs, and both Lewis and I are getting used to having these new people around.
In addition, we finally gave in and got a puppy! She is called Phoebe and she is now 10.5 weeks old and absolutely gorgeous! An absolute bundle of madness and we love her completely! She is brilliant around Lewis, and completely crazy around everybody else until she collapses on the floor in a heap from exhaustion!
To coincide with the new care agency starting, Lewis also got a very bad chest infection. He has been on antibiotics for 2+ weeks now and is still quite poorly with it. He is also having seizures and very high temperatures – all infection related – so we are doing our best to keep him as well as possible while he recovers. We did manage to get out to the cinema recently to see Disney’s Home and he really enjoyed it!
Lewis has had some lovely Post Pals post but we haven’t had chance to take photos of him with it yet to put on his Facebook page. If you have sent Lewis post, we will get around to it, I absolutely promise! And if you leave your return address in the envelope or email, we will also get around to a personal thank you at some point. We make lots of plans to do activities with Lewis but often his poor health prevents this from happening.
Yesterday, Lewis got a visit from the SpecialEffect Charity Team to introduce him to a new, super high-tech eye computer to play games on! They already loan Lewis an eye computer for communications but this new one really is amazing! I expect Lewis will be able to use it sooner than we will learn as he is very quick at picking up the programmes on his eye computer! Now that a new kind of funding has been made available by the government for eye gaze equipment for disabled children, we hope soon to be able to give the charity their equipment back so they can loan it to some other much deserving children!
In July I will be running the Vitality British 10k for the Batten Disease Family Association so I will at some point be begging for sponsorship from all of Lewis’ friends and supporters! Details will be available on Lewis’ facebook in the next few weeks (and then probably every single day after that!).
Update 3rd March 2015
Hello. This past month has been very busy, not least because it was Lewis’ 11th Birthday!
Earlier this month we helped to film a video for the Department of Health about what it is like living with a diagnosis of a rare disease. The video was launched on Lewis’ birthday, which is also World Rare Disease Day! I did mention Post Pals in the interview, but they didn’t keep that part in the final cut, unfortunately. You can watch the video on YouTube
Lewis had to go on a strong course of antibiotics earlier this month because his neck wound had got infected. The good news is that the neck wound is looking better although it is still very large and causes him a lot of pain and discomfort, especially at tape change time which happens every day after his bath. He’s so brave!
We’ve also been interviewing some new potential carers for Lewis’ at home care package, as he does have a 24/7 waking fully trained care requirement. The girls who look after Lewis do 12 hour shifts every single day/night and are amazing. We are so lucky to have such wonderful people in Lewis’ life.
And of course we come to Lewis’ birthday! We were overwhelmed by the amount of Post Pals post Lewis has received for his birthday! There was so much post, we did open a lot of his presents on his actual birthday, but two days later we still have a pile of unopened packages! We have been so busy, we haven’t got around to them yet, but we will, and the photos will be on his facebook page very soon!
He had a wonderful day and not one but FOUR birthday cakes! This morning he had a slice of Gruffalo cake blended in with his porridge. Lewis has blended porridge and fruit every morning for breakfast via his feeding tube into his tummy, then he has a healthy lunch of meat, vegetables and potatoes, pasta or rice, and then some fruit later on. He eats very well, considering he is nil by mouth!
As you may know, Lewis’ medical professionals have suggested that due to his illness, he has a life expectancy of 11 years, so you can imagine this birthday was extra special for us. Let’s all hope and pray that Lewis defies the odds and has many more birthdays after this one!
Love and hugs to all Lewis’ wonderful supporters old and new and as yet undiscovered!
Update 31st January 2015
Not long since our last update and nothing much has changed. I have signed up to do the British 10k in London on behalf of the Batten Disease Family Association. I did the same run in 2010 for the charity SpecialEffect. I think I have only just recovered from that run in time for this one five years later!
Lewis is doing ok. He is very noisy with his breathing and seems to struggle a lot, but his oxygen saturations are good so we aren’t sure what is wrong. We have changed his diet to try and put some weight on him as he is only 22kg, so he’s getting a lot of calorie dense foods at the moment to try and bulk him up a bit. He cannot cope with large volumes so we are having to find foods with lots of calories in a small volume. It is a task!
We are currently getting quotes to have Lewis’ bedroom window changed into a patio door as he has a new charity funded sensory garden pond but it is difficult to get him out into it so we will have direct access from his bedroom which will be particularly important when he becomes too ill to really leave his bedroom.
Lewis has had some wonderful post from Post Pals, particularly recently. We do cherish every letter, postcard and gift, and everything has a place. We do try to remember to put photos on Lewis’ facebook page of all his posts so please do remember to check often.
We saw Lewis’ neurologist recently who has given us permission to give Lewis high dose oral rescue medication at home if he starts having seizures again so this will hopefully greatly reduce our need to take him into hospital.
We are very much looking forward to Lewis’ birthday at the end of February. We have The Gruffalo theme going on and are looking forward to lots of Gruffalo type games on the day! We are going to try REALLY hard to come to the Post Pals Summer Party this year as well!
Lots of love to all Lewis’ friends and supporters!
Update 18th January 2015
I’m really sorry, we don’t seem to have updated for quite some time!
Lewis has Batten Disease. The illness we were twice told he didnt have, even though he showed all signs – well finally through a special micro-DNA study, they found a faulty gene which Lewis got from us (mum and dad) which is a new form of (neuronal ceroid lipofuscinosis) Batten Disease which wasn’t diagnosed before because nobody had seen it before.
It has been a difficult journey coming to terms with this, that Lewis has a terminal illness which has a life expectancy of around 11 years.
Lewis has also been quite poorly over the past couple of months, he sleeps alot and is easily sick so he has lost weight. He now weighs 22kg, but he keeps getting taller, so he is quite skinny!
We do still manage to get smiles from Lewis, but he is in constant, chronic pain with scoliosis, kyphosis, discolated hips, unhealed shoulder fracture, pressure sore in the creases of his neck, and other things we probably even don’t know about. On Boxing Day his broviac line dislodged due to tissue granulation, so for a period of time we were not allowed to leave the house or give Lewis a bath because of the infection risk. It has now been removed so we can leave the house again, and Lewis can have a bath!! However it means we don’t have IV access anymore. Luckily, Lewis’ neurologist has agreed that we can give him an oral dose of his epilepsy rescue medication at home so we no longer have to take Lewis into Resus via ambulance if he goes into seizure clusters. The oral dose will take longer to work than the IV dose but will have the same effect overall (to stop the seizures) and it means we can stay home.
Our aim is to keep Lewis out of hospital and to keep him as well as we can for as long as we can so we can enjoy spending time with him and making precious memories.
As we have had such difficulty taking Lewis away from home for any period of time, the Pilgrimage did fall a little flat, but we have been making up for this by using the Fund to buy things Lewis can enjoy at home.
Lewis still loves to receive Post Pals post and continues to recognise his name on his post, although his eyesight is starting to deteriorate slightly. We continue to post Lewis’ photos on his facebook page and tag Post Pals as much as we can.
We have received some amazing post for Lewis and we are now endeavouring to return post if we have return addresses – we are good at the writing and drawing, but just not so good at the actual getting to the post office part! Bear with us!
We are now planning Lewis’ 11th Birthday party for the end of February. It is going to be small and simple, but all Post Pal buddies are welcome to come and visit Lew Lew at anytime, just let us know and we can make plans!
Thank you again for all your amazing support.
Update 18th October 2014
Lewis is doing well. We had a great surprise recently when Lewis was nominated for and won the Outstanding Bravery Award at the Yorkshire Children Bravery Awards 2014 in Leeds. Lewis got to meet the actual real life Chuckle Brothers which was massively exciting as we have loved watching them for many years!
Lewis’ neck wound is healing well so we will soon be ready for him to go into hospital for his broviac surgery. His broviac line will be removed and replaced with a port-a-cath. Lewis requires this direct IV access as he is very difficult to cannulate and requires IV medications in an extreme emergency situation (if he needs IV medications, it has to be immediately).
We have had a couple of practice trips for Lewis’ Pilgrimage and we are getting ready for our first proper trip to Taunton in Somerset next month. Then in December we will be heading to Southampton to meet some Post Pals friends! Very exciting indeed!
Lewis has received some lovely post this month and we feel very privileged to have made such amazing friends.
Update 29th August 2014
Since we received Lewis’ diagnosis of NCL on KTCD7, we have gone into overdrive fundraising to fulfil some wishes for Lewis. We cant go far with Lewis and we cant do much, so we are planning a trip around the UK to visit his Post Pal friends! The fundraising has been a huge success and we will be starting our visits next month if all goes to plan! We look forward to meeting as many Post Pals people as we can. Lewis wasn’t well enough to come to the Post Pals Party, but we have taken lots of precautions and plan to travel in a special vehicle which is extra comfortable for Lewis, with lots of supplies!
Lewis has received such lovely post this past couple of months. As usual we have taken photographs and put them all on his facebook page. Lewis always loves receiving post, and he recognises the Lewis J on the letters and postcards and parcels!!
There is no plan to take Lewis back to school as he is too poorly and because the time we have left with him is very limited, so we are going to try and make as many memories as we can while we can.
Post Pals has been amazing for us. I remember the first post we received – two huge parcels from the Post Pals Christmas Elves! We haven’t looked back – the friends we have made, the amazing children we have learned about, and the family we have got that we didn’t have all those years ago. Our Post Pals family.
Update 9th July 2014
Yesterday we finally received a diagnosis for Lewis’ condition and that he has defective gene KCT07 which he got from mummy and daddy. It’s incredibly rare for two people to have the same gene problem and meet and have a child. The diagnosis came from the second stage of the DDD study which is a study where the DNA is micro-analysed and this takes several years as you can imagine.
At the moment we are simply in shock.
The condition is progressive and degenerative with no cure, treatment or recovery. It is a distant cousin of Batten Disease which will explain why this kept cropping up in connection with Lewis’ deterioration.
Very little is known about the condition as it is so rare.
We hope (as always with the help of amazing Post Pals buddies) to give Lewis happiness every single day that we are luckily enough to have him with us.
He also had a recent scoliosis appointment and his curve is 100 degrees plus and therefore inoperable.
Our beautiful little boy still manages to smile despite being in constant and considerable pain.
Update 12th May 2014
Hello everybody. Thank you all for the lovely post Lewis has received from Post Pals. We continue to post photos and thank you comments on Lewis’ facebook page and we hope you get to see them. I keep putting particular pieces of post aside to respond to personally by post, and the pile is getting larger all the time! I promise I will get organised!
This past week I have just been able to start caring for Lewis by myself which is a major achievement for me after 5 months of feeling terrified of the responsibility. Lewis has been so smiley and happy and he really is enjoying life at the moment. He is loving watching his DVDs in his new sensory room, having his books read to him, and listening to music. He loves his Post Pals post, especially the post cards which we are going to use to decorate the ceiling with in his sensory room so that when he is lying on the sensory carpet, he can look up at see all his post!
We really feel like we are getting organised here now. Lewis’ trampoline has been sunk into the ground so that he can now go on it easily as it is at ground level. We have had some decking put in the garden so he can sit out comfortably in his wheelchair, and we are also in the process of making a corner of the garden his very own sensory garden!
Lewis still remains undiagnosed but (everything crossed!) his seizures seem to be finally under control again. His shoulder and hip are still sore but we have agreed no surgery this year if we can help it. He also needs extensive spinal surgery for his scolio-kyphosis as well but all his doctors and we his parents agree that the best place for Lewis this year is at home, with no hospital! So we are trying very hard to achieve this!
This weekend we are taking an extra special trip to London to Hamleys for an extra special party for 60 children from all over the UK which is being hosted by the Strongbones Childrens Charity. We have got to dress up as pirates and princesses! We are hoping the trip will go smoothly – it is a practice run for the Post Pals summer party on 28th June as we hope to be able to come to that too!
Lots of love to everybody on Post Pals. Thank you so much for everything and we hope to keep bringing you positive and happy news.
Update 5th February 2014
Happy New Year everybody! Well we have managed to stay at home, although Lewis has had several hospital visits in an ambulance because since we came home from Sheffield Children’s Hospital, he’s had a lot of seizures. Lewis’s neurologist has now started him on a new anti epileptic medication called Phenytoin which is what they were using in hospital as a rescue medication. We hope this works as there isn’t much left to help with his seizures if this new medicine doesn’t work.
Lewis has been so much brighter and happier and we have been getting lots of smiles. He has even laughed, but we can’t hear his laughter sounds anymore because of his tracheostomy. He is gaining weight well – such a difference from the skin and bone he became last summer. He is getting used to his trachy now and his tummy and bowel seem to be settling down as well which is really great news as he has had problems since April 2013, just before his admission to hospital for that long 6 months.
Lewis has lots of care at the moment as it is difficult for me (mum) to cope with all his new requirements on my own. His carers have been absolutely amazing and almost part of the family, which is lucky since they are here 24 hours a day at the moment!
We still have no diagnosis for Lewis. The doctors now say Lewis has ‘undiagnosed neurological degeneration with epileptic type seizures and movement disorder’. We will continue to search for a diagnosis for Lewis, try and discover what turned him from a normal little 3 year old boy into a child who can’t move or speak or eat.
Lewis will be going back to school for a couple of hours in the next few weeks and then the plan is to re-integrate Lewis into school gradually after the Easter holidays. He is really excited about going back to school, but he gets very tired at the moment and all his new medical requirements have to be sorted before he can go back. He will go back to school with a one-to-one carer who is fully trained to care for him.
Lewis really needs hip and spine surgery this year but his doctors have agreed that he needs to have a good period of recovery after long hospital admission, so we are going to try and put it all off until next year if we can.
Lewis has loved receiving all his amazing Post Pals post while we were in Sheffield Children’s Hospital, and also since we have come home. He was thrilled with his amazing Elf gifts! Thank you! It has been difficult for me to thank everybody personally because I had a bit of a breakdown when we finally got home from hospital so I’ve not been well myself, but once I am back on track, I will try to thank everybody personally for the amazing support, gifts, cards, letters and love Lewis and I have received over the past months.
Update 26th November 2013
Lewis has been in HDU at Sheffield children’s hospital (after various trips back and forth to ICU) for over 5 months now. The Post Pals cards and letters and postcards he has received have been great for decorating his bed space.
Well, everything crossed, this coming Monday we will be packing everything away ready to finally leave hospital and go to Bluebell Wood Children’s Hospice until Friday when we will finally go home!
We are very excited but as Lewis has been this close to discharge on numerous occasions, we won’t celebrate until we are settled in and have definitely left HDU for good! Well, at least until next year!
Update 26th October 2013
I had my first tracheostomy change on Thursday. It needs changing every week. The tapes that hold it in place need changing every evening. At the moment it is quite a big hole in my neck but as it heals up the hole will get smaller. The skin on my face, which was getting very sore from the mask I was wearing, is now much better.
I am still having very powerful and uncomfortable spasms in my right shoulder which I have now had Botox for – hopefully this will start to work in the next few days.
My left hip has now become dislocated and will require surgery (I had the same surgery on my right hip last year).
I am on antibiotics for a UTI again so I will be having my kidneys checked at some point to make sure they are functioning ok.
Everybody who needs to be trained in how to care for me with my tracheostomy is coming in to learn all the new ways to care for me as I will now have to be cared for only by a person who has had tracheostomy training. Once everyone is happy and comfortable caring for me, I will be allowed to start going home and should be home properly before Christmas.
Mummy has planned an extra special Christmas for us to celebrate!
Update 24th October 2013
Lewis has now had his tracheostomy and we are learning how to care for him with this new thing.
He’s doing really well and is really bright and happy. He’s really loving his Post Pals post and we are decorating his bed space as much as we can to make it nice for him.
We hope to be able to go home before Christmas.
Update 14th October 2013
Today we had Lewis’ MDT meeting (all professionals involved in Lewis’ care) and we expected to be discussing being discharged at some point this week. Instead we will be here for another 4-6 weeks as Lewis will be having surgery early next week to give him a tracheotomy. This is necessary because attempts to wean Lewis off the NIV have failed and we really want to get Lewis out of hospital and back home.
A bit of a shock, very scary, but Lewis is a hero and we love him so very much.
Update 3rd October 2013
Lewis is still in critical care at Sheffield children’s hospital but is doing really well. We were due to go on home leave for 48 hours this week but Lewis has managed to get a chest infection and as he is now on non invasive ventilation for his weakened lungs (from prolonged and numerous intubations on ICU). So because he now also needs oxygen, he needs to stay in hospital until he has kicked this bug!
It’s been a very long slog in hospital and we are really looking forward to going home but better to be properly well before we take that big step.
Lewis has managed to get out to the park across the road before he got the infection, so he has seen a bit of the outside world! We miss our cats and fish!
As we have been in hospital all summer, we intend to make the most of the rest of the year so will be celebrating Halloween, bonfire night and Christmas in great style!
Thank you to everybody who has sent Lewis cards, postcards, letters and gifts. We really appreciate it all and do try to take photos and do thank yous on his Facebook page.
Update 31st August 2013
Lewis has now been in hospital for 10 weeks, most of them in ICU at sheffield children’s hospital. There have been a few problems. The first two were severe stomach problems combined with very low levels in his blood. The blood became the priority and so the choices were bone marrow aspiration to check function, or temporarily stopping Lewis’ anti epileptic medication as a side effect of this is decreased bone marrow function. Lewis has been on the same AED for 6 years, but they suggested the stomach problems may have triggered this new reaction.
Less than a week into reducing the AED, Lewis went into status epilepticus (constantly having seizures) so was intubated and transferred from Doncaster to Sheffield by the amazing Embrace transport team. While on ICU, we discovered what was causing Lewis’ stomach problems. When his PEG was replaced with a new one in 2010, his bowel had moved between his abdomen and stomach so the new PEG was inserted through the bowel and remained there for 3 years without anyone knowing. During this time, Lewis PEG sore was always very sore and infected and unbeknown to us, a tunnel was forming, connecting Lewis bowel and stomach together and his bowel had also become stuck to his abdomen wall.
Lewis had already lost a lot of weight (approximately a third of his body weight) through his recent stomach problems, and so it was agreed he was not strong enough for the major laparotomy surgery required so the surgeons decided to try the surgery laparoscopically (using cameras instead of a large incision). The surgery was successful – they unstuck the bowel from the abdomen, sealed up the infected peg site and put in a new peg. They decided to leave the tunnel and hope it healed itself. Unfortunately the tunnel has not healed so Lewis will be fed into his jejunum (entrance to intestines) for 3 months and when he is stronger, he will have the laparotomy to sew up the holes.
So that was sorted out, fits had calmed down, AED was re-started, and we were coming home. Then Lewis suffered a collapsed lung so went back into ICU.
Since then, Lewis has had problems with collapsed lungs and been intubated and vented several times. He has also gone into status epilepticus again after an antibiotic for a urine infection had a nasty side effect of dropping his AED levels to zero. That was 2 weeks ago.
On Tuesday, Lewis had his ventilator tube removed and he went on to non invasive ventilation (NIV) but only lasted half an hour before requiring re-intubating. Yesterday they tried again and he is now on NIV and doing ok although he has another urine infection and is on (different) antibiotics, but the infection is causing him to have a lot of fits so for now we are still in intensive care.
Lewis has been through so much and has been so immensely brave. He has loved getting post pals cards, letters, postcards and gifts and we have been decorating his bed space with them all. We have been overwhelmed by how loving and caring people have been.
We hope to be able to start talking about home again in the next 2-3 weeks if we don’t have any more setbacks.
Update 21st August 2013
Well it’s been a tough few days for mummy and daddy and I. My EEG on Monday showed I’m in non convulsive status which means I’m having fits all the time. I moved back into ICU to be ventilated and am now on very strong sedation. A couple of not very nice options have been discussed to try and control my seizures but at the moment we are hoping my anti epileptic drug (which has been recently introduced) will soon take effect and so no fiercer intervention will be required.
So at the moment I’m asleep most of the time. I’m still having breakthrough seizure type movements but only when I am awake so I’m in a dark and quiet room and everybody has to whisper!
Tomorrow I’m going to theatre to have a broviac line (which is a permanent-ish type of canular) and I’m also having my jej PEG replaced with a jej mickey button.
Update 30th July 20013
As Lewis seizures are not being controlled in critical care HDU ward, the decision has been made to increase the sedation to a level where Lewis will be unconscious. As this may in itself cause respiratory problems, we are moving back next door to critical care ICU ward. This is being done for 24-48 hours with a 24-36 hour post sedation recovery plan so the neurologists and medics can come up with a reason for the increased seizures (infection?) and a plan for their future control. Until then we are reading a fabulous book Lewis has received from Post Pals but I’m sorry I can’t remember exactly who it’s from as we are quite disorganised at the moment, but thank you! Whoever sent it!
Update 29th July 2013
Lewis’ lung has started to reinflate and he is breathing by himself. He is in HDU due to seizures though.
Lewis has had so much Post Pals post (thank you!) but because he’s not stopped fitting, we haven’t had chance to do photos. But we will!!! In particular Lewis loved Grace’s jokes and Henry’s footprints, and Julie and Alexander’s book about Jake the pirate. Thank you to Harriet for the beautiful pillowcase and Clare and Jessie for the bunting. So many more cards and gifts and we will get to them when things are a little less tense!
Update 27th July 2013
Yesterday Lewis was moved back to PICU. He has made it through the night, though his left lung is still partly collapsed. Physio came last night and loosened the gunk inside the lung which is stopping it being fully inflated. He is having physio again this morning to clear more. Lewis is sedated and his breathing is being undertaken by a ventilator but he’s doing better than last night and they hope to X-ray again this morning and show his left side is doing better and may be partly inflated now. Keep strong for him everybody, he’s fighting back and won’t let this get to him. Our brave soldier.
Update 19th July 2013
Lewis has woken up today. During an X-ray and CT scan of his abdomen this afternoon they discovered a problem with his PEG and he will require surgery early next week. This is in addition to his other problems. He is doing well now off the ventilator but is needing suction and oxygen often.
Update 17th July 2013
Lewis is in Sheffield PICU after spending three weeks in Doncaster Children’s Hospital. The doctors couldn’t discover what was wrong with him (he’s been having severe stomach problems for 8 weeks now) and during this time his blood levels have dropped very low so he was admitted. The doctors decided that either Lewis’ already undiagnosed degenerative condition had worsened and was now affecting his internal organs or that he was having an adverse reaction to his anti epileptic medication and so they decided to stop his medication and see if the bloods dropped.
Yesterday he fitted constantly and so after following usual hospital protocol, Lewis was intubated and sedated and transferred to Sheffield PICU. He hasn’t woken up yet but we are hoping he will soon. He is being very well looked after and Mummy and Daddy (and big bro Samuel) are taking turns staying at his bedside for when he wakes up.
Update 1st June 2013
Lewis is currently in hospital with an unexplained abdominal problem. He started with a poorly tummy last week and has since got increasingly worse and is now being closely monitored as his condition is deteriorating. We were hoping he was on the mend yesterday but today he’s a lot worse and will be in hospital for a little while longer.
Update 5th May 2013
Well Lewis has been on new medication for his overnight screaming, since we discovered they are a new type of seizure. It has taken almost 18 months for this to be sorted out – 18 months of him not sleeping, screaming for hours every night, being exhausted all day. Finally the doctors agreed to an overnight EEG and so now we are trying a new anti seizure drug. So far so good but it is difficult trying to get the balance right… too much and he’s too sleepy in the daytime, not enough and the screaming comes back. We have an appointment with the neurologist later this month to discuss long term treatment, and another overnight EEG is booked for June.
Lewis has been enjoying school a lot more now he’s not tired all the time, he’s much more chatty and bright during the day, and he’s sleeping so much better – we aren’t used to all this sleep!
We went to see Lewis’ private doctor in London in April and as a result some new tests have been done and we are trying some new foods and supplements. Every little thing helps. We will not give up searching for some answers for Lewis as long as the doctors are unable to give us any idea why he got ill and is now like he is.
This weekend Lewis and I went to visit his big brother Samuel at university for the day. Samuel is doing really well and we are so proud of him. He will be 20 next week so he really is Lewis’ BIG bro!
We are looking forward to spending a lot more time outdoors now the weather is getting nicer. Lewis has enjoyed watching me tidying the garden and helping out a little bit in his own special way. Lewis is very sensitive to the sun so he can’t go out in it without lots of sun cream or he gets very sore indeed so it is usually only for a short time, or we spend a lot of time in the shade. But Lewis does love to be outdoors, and we play with bubbles and other messy things, lots of which he receives from his lovely friends at Post Pals.
Update 7th April 2013
What a busy couple of months! Lots and lots of appointments to try and discover why Lewis has been unable to sleep, including a 24 hour overnight EEG which tested Lewis’ brain activity during sleep so we could see what was happening to make him wake up screaming several times a night. Well it turns out Lewis is having a new kind of epileptic seizure and he is having a lot more than we were even noticing. The doctors think he was probably having only 30-90 minutes of decent sleep per night. No wonder he was so tired and unhappy. Well we are really pleased to say that so far (everything crossed!) the new medicine Lewis is trying has helped to control these new seizures and he’s having a lot less so he’s getting a lot more sleep and is getting back to his usual smiley, chatty, happy self with his big beaming smile!
Lewis has had a lovely Easter holiday so far, spending time with family and friends and receiving lots of Post Pals post which he continues to love! Looking forward to some sunshine so we can get outside in the garden a bit more as we are all very fed up with snow now!
Update 3rd February 2013
What a busy month January has been! Lewis has had real problems sleeping. He’s been having sporadic sleep issues for around 14 months but this January he has been struggling to sleep at night at all, and so has been very sleepy during the day and not happy at all. We have spoken to his medical team about this before, but as it has escalated quite alarmingly this month, we have asked for an emergency appointment to discuss some kind of sleep study to see if we can get to the bottom of the unexplained screaming out in the night, often for several hours at a time.
Lewis has received some wonderful post this month, cards and postcards and letters and some great DVDs. He absolutely adores watching films as this is really one of the only activities, alongside reading, that he can participate actively in. Watching and listening are his only abilities. He enjoyed watching Mummy trying to drink milk through the crazy straws he received from Post Pals recently! And he did laugh whilst watching Open Season 1, 2 and 3 which were also from one of his Post Pal friends, Grace.
So it has been a tough month with little sleep and not many smiles, and we didn’t even get to make a snowman as it was far too cold to go outside! But we enjoyed looking at everyone else’s on the internet!
We are looking forward to some finer weather soon and also Lewis’ birthday is later this month, can’t believe he will be 9! It is always difficult at birthdays because we are another year further into him being ill, and another year with no idea why he is ill like he is, no explanation, no cause, and no hope of a diagnosis, but we try not to give up as one day someone might be able to help Lewis to get better.
Lewis’ scars are healing well after his hip surgery. We need to speak to the surgeon about it though because he is getting a sore patch of skin from pressure which was not there before the surgery. In fact, when he is sat on my knee, his bone is very hard and digs in so it must be very uncomfortable for him too.
We will keep trying to make Lewis’ life as happy and comfortable as possible, and we have to say that having so many Post Pals friends has been an absolute life saver for us and for Lewis. Knowing people care and want to take the time to write a little note or send a card or a gift to our gorgeous little boy, it is just wonderful. And Lewis ADORES receiving Post Pals post! It is the first thing we do when he gets in from school, before anything else!
Happy February everybody! Love from Lewis and family x
Update 4th January 2013
Happy New Year everybody! Lewis had a split Christmas this year as he spent it with Daddy, so he will be having a second Christmas at home with me and his big brother Samuel at the weekend, so thank you to all the Post Pals who sent Lewis Christmas gifts, especially his two elves – we will be taking photos and doing proper thank yous once he’s opened all his gifts. Lewis also received lots of lovely Christmas cards, and almost a full set from the reindeers! The Reindeer cards were wonderful and Lewis really enjoyed listening to their antics in the letters they wrote him.
Lewis has been out of his horrible plaster for several weeks now and is coping a lot better. His scars are healing nicely and his hip position seems to be good, although the surgery and the plaster for 9 weeks has caused his scoliosis to get a lot worse. We have an appointment with the consultant next week to see how bad it has got. It is giving him a lot of pain at bedtime, being laid flat, so we will need to talk to the consultant about this too as Lewis is not sleeping well at night anyway, and this is making it worse for him.
Lewis’ results came back from the micro-array study which took almost a year to carry out. Scientists looked very closely at his DNA to check for any abnormalities – it takes so long as the DNA is very tiny and there is a lot of it! The results were that there were no abnormalities at all, so they are now putting Lewis’ DNA into a further study which will take slightly longer which then micro micro analyses Lewis’ DNA to see if they can find anything that way. Other than that, there are no new tests on the horizon and so we still have no idea what made Lewis ill, or what continues to keep him ill.
On a positive note, Lewis is really enjoying life at present, and is often smiling and happy, and occasionally will laugh at his favourite films or TV programmes. At the moment he is loving Open Season 2 and Open Season 3 and Happy Feet 2, but his favourite favourite at the moment is RIO which we have in 3D so its extra special for him to watch!
Lewis does love to receive post from Post Pals and we do keep everything that is sent. A lot of his pictures and cards are on display in and around his room and the house and it is always an absolute joy to know that people from all over the world are thinking and care about our gorgeous Lew Lew, so thank you very much indeed.
Update 27th November 2012
Hello and thank you everybody for Lewis’ wonderful postcards, cards, letters and gifts over the past couple of months.
Lewis is now out of plaster and finding it very strange after 9 weeks of being laid almost flat on his back with his legs sticking out to the sides! He is quite skinny and a bit spotty so lots of massage and cream is needed. Its also very uncomfortable for him and he has two rather long wounds, but they are healing very nicely. He is still in a lot of pain when moved, but is settled now when in a good position and is enjoying being back at school half days at the moment. He has loved receiving his cards and letters and gifts from Post Pals and we treasure them all! Everything is kept!
So now we are just waiting for Christmas and for big brother Samuel to come home from university for a few weeks to visit us. We would like a rest from hospital until next year so Lewis’ next appointment is at the scoliosis clinic in January. Having his hips in plaster has not helped his scoliosis at all and we are very worried that it has worsened quite considerably, but we will find out soon enough, so will try to put it out of our mind for now.
Since Lewis has been improving after his pelvis/hip surgery, he has been quite ‘chatty’ which has been lovely and we’ve had quite a few smiles, especially when reading letters and books or watching DVDs from Post Pals. It is so lovely to receive post from over the seas, so lovely to know that people very far away are thinking about our gorgeous Lew Lew, but also extra special to receive Post Pals post from people just around the corner! Thank you again! And we hope you have a wonderful Christmas – we will, as usual, do our best to make sure Lewis has the best Christmas he can!
Update 25th September 2012
Well its been a very stressful few weeks! The weeks leading up to Lewis’ hip surgery were worrying as it was all so scary and major, especially when we went for the pre-op appointment and found out just how major his surgery would be! But before then, he got to go to Blackpool for a week with Daddy and Granny and Grandad and he had lots of fun there!
So on 7th September we turned up at the hospital for Lewis’ operation and he was first down on the list to go to theatre. Four and a half hours later they paged us to say he was in recovery and we rushed up to see him. Since Lewis became disabled around the age of 3, his positioning has been a problem and he has developed quite severe scoliosis. This, alongside difficulty with supporting his upper body effectively, has caused his right hip to slowly come out of place and his pelvic bones have grown incorrectly because of this. This meant that Lewis’ right hip was basically totally displaced and there was no simple way to put it back. So the surgeons decided to break Lewis’ pelvis, shorten his right thigh bone as this had also grown longer due to the hip being out, and to use a plate and screws to put his hip back into a better position. All this was done to hopefully help Lewis’ positioning and also to ease pain which it was starting to cause him.
When we saw Lewis, he had a canular into his neck (he doesn’t like giving up his veins to needles!) and was on oxygen, and had masses of blue plaster cast round his waist, down both legs, all the way to his toes. He will be in this until at least 22nd November when we will go back to hospital for an x-ray to see if the surgery has worked and that the thigh bone has re-set and the pelvis is safe.
Lewis was in hospital for 12 days after his surgery because he got a couple of infections requiring IV antibiotics, as well as needing a blood transfusion due to losing a lot of blood during surgery. It was quite worrying for the first week as Lewis was asleep most of the time, very pale and not very responsive, but as the blood transfusion kicked in, along with the antibiotics starting to take effect, he started to brighten up which was really great news and we were finally allowed to come home.
Now we are at home, Lewis is fighting off a tummy bug and a chest infection. It isn’t helped by the fact that his plaster is set in such a way that he is laid almost flat, and of course it is very difficult to move him about with his huge hip spica on. Even the OTs and physios on the ward were surprised about how large his plaster is! He only just fits through an average doorway! So Lewis is spending a lot of time watching TV and having stories read to him in bed! He has received a lovely parcel from Post Pals which made him smile, and some lovely Get Well cards and postcards too. He also received some lovely cards and gifts whilst in hospital and we put photos of these on his facebook page to share with everybody.
So now we are hoping Lewis’ general health will improve, that his surgery will be a success, and that after 22nd November he will be out of plaster and ready to go back to school as he is really missing all his friends!
Update 12th March 2012
Sorry it’s been so very long since the last update. I’m afraid the winter blues set in and the computer hasn’t got much attention at all. Lewis was ill most of November/December/January and is only just really starting to pick up. There was nothing specific that was wrong, but he was very unhappy and generally under the weather. We had several hospital visits to try and pinpoint the problem, and a few visits to the GP as well, as Lewis was unable to sleep at night, waking and crying for hours, with no apparent cause, and with no way to console him. So we’ve all been very very tired.
Everything crossed, things seem to be picking up and he’s becoming a lot brighter, and just this week starting to sleep through the night again, almost the whole night anyway!
Christmas was difficult as he was very ill on Christmas Day so although he had so many presents from Post Pals, he was too exhausted and unhappy to really open many and it really took it out of him when we managed to open a few, so we decided to open them with him gradually over the next few days. He got some wonderful cards and presents from Post Pals posties as well as an extra special card from each of Father Christmas’ reindeers! These will now become annual Christmas decorations!
Lewis had to have some more bloods taken in January as the bloods sent off from Liverpool to test for Battens Disease were sent to the wrong lab so they couldn’t be done. The poor doctor at Sheffield who tried getting blood from Lew had a real struggle and after 1.5 hours only managed 3mls! He sent them off anyway and we got the results back a couple of weeks ago – negative! So here we are again at square one – no idea why Lewis is ill or what his diagnosis is! But it was great news to have it confirmed that he definitely does NOT have Battens Disease.
In February Lewis had his 8th Birthday! Again, he got lots of lovely cards and presents from Post Pals and as he was feeling MUCH better, he really enjoyed opening these and still has many of them up in his bedroom. He has finally moved into his ‘new’ bedroom and we are fast getting used to it being much easier to manage, and Lewis LOVES having a TV on the wall! He’s also got all his reading books on shelves in his new room so its much easier to choose a bedtime story!
Now the weather is improving, we are trying to get out and about as much as possible as Lewis really loves the fresh air! Sadly, in the winter months, we tend to avoid people because of coughs and colds and bugs which Lewis picks up very quickly and which do tend to knock him back quite severely, so we love the warmer weather and being outdoors!
Thanks to Sian and Jamie for the wonderful gifts and cards and thank you to Teresa Murray for the lovely gifts and cards which always make us smile.
Update 16th November 2011
Well, Lewis did indeed have his brain biopsy in September this year, which was a very scary time for all of us as we had left it until the very last and had many many other tests done first that weren’t so invasive or risky. Of course to the neurosurgeons, its a daily thing, but for us it was major and to be honest I think if we’d known how huge the scar would be on Lewis’ head, we might have thought about it a bit more! But it was definitely necessary as we had run out of ideas and we are determined to continue to try and find out what has caused Lewis’ illness as we do believe the miracle might happen where he can get better. As long as he is completely undiagnosed, there is hope.
We did have a fright when Lewis came home after the surgery. We were in the car for 2.5 hours for the drive from Liverpool back to Doncaster, and when we arrived home we noticed that Lewis’ head had swelled up A LOT and was squishy down the side of his wound! We panicked, an ambulance was called, and we were rushed to hospital. Well… panic over… Alder Hey were telephoned and advised us that it was completely normal and would drain over a few days! Which it did, phew!
So after a few more days off to recover properly, Lewis was very very happy to go back to school. He had definitely missed all his friends and teachers, as he had been off school since July when the summer holidays started. So we then had the wait for any results of the biopsy. At the time, the surgeon did say they had noticed that the arachnid membrane which covers the brain just inside the skull was abnormal so that was giving them something to look at, as well as investigations of his actual brain tissue (both white and grey matter) and his brain fluids.
Apart from a bunch of seizures and a ‘Frankenstein’ head (just in time for Halloween!) Lewis has recovered really well and is back to his normal happy self. He still loves receiving post from his Post Pals friends, and was very very excited to receive a package of goodies all the way from Madagascar! He also had great fun with his Halloween package from Post Pals, and continues to enjoy hearing about Dottie the Dalmatian.
Yesterday we returned to Alder Hey for the results of Lewis’ biopsy and we really didn’t expect much. Lewis had his wound checked by the surgeon who was very happy with its healing, and he had an EEG as well, he wasn’t bothered about having his head covered in electrodes as Cbeebies was on the TV!
Our final appointment was with the neurologist and we are still in shock really from what she told us. They have noticed in Lewis’ brain cells some pigment which is highly suggestive of Late Infantile Batten Disease. Now you may remember Lewis was tested for this 5 years ago (almost to the day) and the results were negative. But as this particular pigment in the cells is such a big marker for this condition, they have taken bloods to send to Guys Hospital in London (where the UK specialist on Batten Disease is based) to check Lewis’ lymphocytes. Apparently this is a new and conclusive test and will give a definite result. Although Lewis does not display a lot of typical Batten symptoms, there is a lot about him that is typical. So we now have to wait 4 weeks to get the results of that. It’s going to be very difficult and we are all very very upset and we really had hoped never to hear that word again in relation to Lewis. However, we will hope and pray that like all the other tests, this one will also come back negative.
In the meantime, we shall continue to enjoy spending time with Lewis (perhaps a little bit more than usual if that’s possible!) and work very hard to make this Christmas very special for him.
Thank you, as always, to everyone who sends Lewis cards, letters, postcards, and gifts. He really does love to receive his post and we do keep everything.
Update 2nd August 2011
Lewis is enjoying the school holidays and being able to visit lots of fun places with his new friend Lucy who is doing some work experience caring for Lew before she goes back to university in September.
Lewis is still awaiting a further appointment at Alder Hey hospital in Liverpool to discuss his brain biopsy. We have heard from the consultant and are just waiting for the appointment letter to arrive – very scary!
Lewis’ antibiotic treatment has almost finished now after more than a year. He did at some point have some bacteria in his blood caused by a bite from an infected tick, but all that bacteria is now gone from his system so we are slowly reducing the antibiotics and will be stopping them completely soon. We hope that this will not cause Lewis to return to having severe chest infections again. We will see when the colder weather comes.
Lewis is now wearing glasses as he is very slightly short sighted. What we have found is that when watching TV, if he doesn’t wear his glasses, then his eyes water, so we make sure to remember now!
We have been using a new sleep system for about a month now and are hoping to see some great improvements soon in his spine and ribcage situation. At the moment he has severe scoliosis and a rotated ribcage causing one of his shoulders to ‘hump’ and his ribs on one side to stick out. He’s basically all twisty. But we are hoping that with the sleep system and with good overall positioning, we will be able to prevent or at least put off for a very long time any spinal surgery, and at the same time hopefully resolve his hip displacement problem too which has been caused by his twisty spine.
Lew’s general health (everything crossed as usual!) is good and he’s definitely enjoying the sunshine! People comment on his lovely colour, but I point out to them that it is only on the bits that show! He’s got a very white belly and back!
We have noticed that Lewis is very very smiley and happy most of the time nowadays, which we see has a really good sign. Also, his head control is continuing to improve, and he’s started making a lot more sounds, so we do make a massive effort to have ‘chats’ with him. Whilst life with Lewis is physically very hard work, and emotionally very difficult at times (with worrying about the future and his health), he is always an absolute joy to spend time with and we love him so much, and knowing that his Post Pals friends care about him too is just amazing.
Thank you to Post Pals and to everyone who sends Lewis post. He does love to receive it, we keep everything, and we keep extra special items out on display so we can look at them often.
Thank you to Sian and Jamie for the fantastic home-made photo book about their rabbit called Milo which has been made specifically for Lewis. Thank you to Holly for the crafty bits and the hand puppet making kit.
Update 14th June 2011
Lewis continues to do really well on his blended vegetables diet! So far he is having butternut squash, sweet potatoes and carrots! Apples next! All this is through his PEG (tube) as he cannot have any food/liquid in his mouth.
Lewis is growing very fast, lots of people comment on his long eyelashes, but now they are also commenting on his length even though he’s always in a wheelchair! He’s not been able to go in his stander recently as unfortunately he fell off his bed and broke his leg AGAIN! So he had a plaster cast on for three weeks but had that removed today.
Lewis has had lots of hospital appointments recently as we are trying to get lots of testing done to continue to try and find out what has made him ill. We have been invited to take part in a genetic study and we hope that this will give us some answers although it does take up to one year to carry out the testing so it will be a while before we hear anything.
Lewis is, as ever, very happy to be receiving post from Post Pals! He has received today two letters from schoolchildren in Switzerland! He loved having these read to him, and looking at the colourful stickers on the letters.
Unfortunately Lewis will not be able to come to the Post Pals party this year as he is unable to travel far anymore. We travel for important hospital appointments (in London and in Liverpool) but these distance appointments do take their toll and make him ill. Although we know he would love to see everyone at the Post Pals party, we also know that the distance travelling and the need to stay somewhere overnight would really upset his delicate constitution, resulting in increased fitting, and digestive shutdown, and no smiles which is always really sad!
Thank you so much as always to everybody who sends Lewis cards and letters and gifts. Lewis loves getting mail from Dottie and we always read the letters and show the postcards to Domino!
Update 13th April 2011
Lewis has been back to Alder Hey for the results of his MRI and they have come back normal as usual! He also had some bloods taken for various, very rare conditions, also all normal. We are now waiting to arrange either an angiogram and then a brain biopsy, or to just go straight in for the brain biopsy. We should hear from the hospital in the next few weeks about that.
We are also starting Lewis on a blenderised diet, which basically means we will wean him off the formula milk he has through his PEG and he will instead have real, healthy nutritional food, through his PEG which has been blended to a liquid consistency. It’s quite daunting but will definitely be worth it for the health benefits!
Lewis also had another test for Lyme Disease which has also come back as negative which suggests that either his original positive test was a false-positive, or that the long-term use of antibiotics has eradicated the disease from his system. Whichever, the doctors have advised that we now start to reduce Lewis’ antibiotic intake which is good, but also a bit scary as he has been on them for such a long time!
Lewis has lost both his top front teeth and his new ones are growing through, but there isn’t enough room! So we are waiting for a dental appointment to see what can be sorted out so he doesn’t end up all crooked!
Lewis continues to be a super smiley and happy young man who is always wanting to see what the postman has brought for us! He loves it when the post has his name on so thank you to all the fabulous Post Pals out there who send Lewis postcards, letters, cards and gifts! I cant remember if I thanked one particular Post Pal last month but massive THANK YOU to Sian and Jamie (who have been sending post to Lewis for 3+ years now) for the donation to Lewis’ Fund!
Looking forward to the summer now so we can spend lots of time in the garden with the cats and the chickens!
Update 2nd March 2011
February was Lewis’ birthday month and what a busy month it has been!! He’s had ALOT of hospital appointments as the doctor in Liverpool (Alder Hey) was true to her word and is trying lots of new things to see if we can find a diagnosis finally for Lewis. So we’ve been flitting between Doncaster hospital, Sheffield Children’s hospital, and Alder Hey hospital in Liverpool.
Since our horrible appointment at the scoliosis clinic we’ve seen some improvements already in Lewis’ posture as we’ve starting to be much more focussed on his positioning in his seat, in bed, and with his new Charleywrap from New Zealand. We are determined to prove to the doctor we saw who said ‘nothing can be done, just wait until it gets so bad he needs surgery’ that positioning and posture management can and will help to maintain Lewis’ spine and extend the time he has before surgery does become necessary.
On 22nd February Lewis had an appointment with a specialist optician who prescribed him with glasses for very mild short sightedness so that’s a trip for the weekend to get some glasses! On 23rd February Lewis had his general anaesthetic at Alder Hey for his MRI, blood tests and lumbar puncture. Unfortunately they couldn’t get the needle in the correct position for the lumbar puncture so we’ll have to go back again for this another time. We will get the results from the other tests over the next few weeks. The list of things being tested for is quite long but is on Lewis’ facebook page. On 24th February Lewis had his check up at Doncaster about his broken (but not fixed) leg and the x-ray showed that all was fine so that’s a relief!
On a sad note, Lewis’ kitten (Tig) who would be a year old on 17th March has gone missing. Tig was definitely Lewis’ kitten out of all our cats as he would always sit with Lewis, whether in his chair or on his bed, and they had a special bond. Tig has been missing since 11th February. Yesterday we gave in and went to the RSPCA to get a new cat who is 4 years old and is called Mannie and has settled in already!!
The end of February was of course Lewis’ 7th Birthday! He received lots of cards from Post Pals which I saved for his big day. Unfortunately, on his actual birthday, he was ill in the morning so missed out on spending his birthday at school, but Mummy and Granny made up for that at home! In the afternoon he had a small tea party with TWO birthday cakes, some singing and dancing and lots of fun! Thank you very much to all the Post Pals who sent Lewis a card, and thank you also for the gifts he received, especially his Disney DVD! He has received some fantastic hand made cards and we do keep them ALL! We are running out of space to display them in Lewis’ small bedroom but when he moves room after the adaptations have been done (hoist, special bath, etc) we will have more room and will have a ‘Post Pals Wall’ like we used to have before we moved house in 2008.
Update 1st February 2011
Lewis received lots of cards and letters and gifts in December from his Post Pal friends and Elves, but as he was spending Christmas with his Dad, we saved them until he came home on 3rd January when Lewis had his second Christmas!!! He loved opening his gifts so thank you everybody who sent Lewis a gift or a card or a letter… he really enjoyed opening them and we are making good use of everything he received! In January Lewis received a scrapbook kit from Post Pals which we will be filling up over the next month or two!
Lewis has, fingers crossed, been well most of the time apart from un-explained temperatures which is usual for this time of year. We’ve managed to keep at bay any chest infections so far and are hopeful we can survive this winter without a hospital visit (please don’t let that be famous last words!).
Lewis is seeing a new doctor now at the Alder Hey Hospital in Liverpool. As a result of seeing this new doctor, Lewis is now in the process of undergoing several new tests. He’s already had a very detailed eye examination involving having sensors on his head and face, and looking at flashing lights and a computer screen with moving squares. It made my eyes go funny as Lew was sat on my lap for the 30 minute test! Lewis will be going under anaesthetic again at the end of this month for another MRI (a very detailed extra powerful one) and at the same time will have extensive bloods taken for more tests as well as a lumbar puncture for more testing of his spinal fluid and DNA. The doctor in Liverpool is VERY hopeful that she can find some answer for Lewis. She said that because Lewis was completely fine until he was past his second birthday (i.e. was not born with a condition) it should be possible to discover what caused him to become ill and (we wish and hope and pray!) to find some way of making Lewis better! There is talk of a brain biopsy if the MRI scan shows anything that needs further investigation and we have discussed this and will agree to this surgery if we believe it could lead to some improvement with Lewis’ condition.
Lewis continues to be his happy and bubbly self and we are seeing very tiny improvements in him, which although they are really tiny, are so amazing for us to see! He is getting brilliant at being able to move his head about for a short while, lifting it off his chest when it falls forward, turning his head to look to either side of him – amazing! And he smiles most of the time now which is really fun especially because he has lost one of his top front teeth so I call him Gummy Bear sometimes! In the past couple of weeks we’ve even experienced Lewis’ laughter once or twice which really is magical!
The best thing (I think) about the improvements in Lewis just recently is that other people who don’t know him well are starting to see him! Usually, people will see Lewis in his wheelchair and assume he has cerebral palsy and is not mentally responsive either. But with his exceptional eye tracking and responsive facial expressions, people are now seeing the Lewis inside who understands and wants to interact with people! He may not be able to move his body but his brain, his personality, is very intact!
So lots of hope for us here at the moment and everything crossed!
Update 15th December 2010
As usual it’s very busy here!! Lewis is stable which is great for this time of year – often we would be in and out of hospital but FINGERS CROSSED he’s doing okay! He has however been to hospital quite a lot for appointments. As you know, he broke his leg in October so had to have a lot of time off school as it was very difficult to transport/manual handle him. He had his plaster off in mid-November and is now plaster-free, hooray! He has had some intensive physio to try and sort out any niggles and is doing a lot better!
We have an appointment in January to see the orthopaedic team about his hip placement and his spine (scoliosis) but in the meantime we found out about a family in New Zealand who have made their very own version of a back/spine brace which is much friendlier than the NHS versions available here. We have put our order in to get one and hope to receive it early next year – we have had approval from Lewis’ physios to try this.
Lewis was very very happy to be back at school but then the snow arrived!! We could not leave the house for three whole days because of the extent of the snow (18 inches in some parts of our garden and drive and even out on the road!). School was closed for a little bit longer because of the ice, but thankfully Lew is now back at school and this week he was a shepherd in his nativity. He loved it! The photographs are on his facebook page for everyone to see.
Today we had a very exciting appointment at the Alder Hey hospital in Liverpool. Lewis saw a paediatric neurologist we had been recommended and she was fantastic! She was so positive and really confident about new tests and really getting to the bottom of why Lewis is ill. She feels that it is just a matter of finding the right tests so that we can finally get some answers and she’s determined to get us there if she can! So Lewis will be having another (super duper very high powered) MRI in the next couple of months which will show up any changes in his brain that might not have been picked up before. She also wants to take some more bloods to test for other conditions, particularly metabolic illnesses, as well as doing a further lumbar puncture to test the DNA from his spinal fluid for various illnesses she has in mind. She has also spoken to the neurosurgeons at Alder Hey about the possibility of a brain biopsy for Lewis – now this is very scary for all of us, but the place in the brain they want to take the biopsy from is a very easy part to get to (for a brain surgeon!!) so once Lewis has had the MRI, we will decide whether or not to go ahead with this – the reason for doing this would be that the results might lead us towards a treatment programme that could see some real improvements in Lewis’ condition and that is something we would love to see and what we are always hoping for, so we are definitely leaning towards having this done.
Lewis is very excited about Christmas, we have the tree up and the decorations and lights are sparkling all over the house! Lewis will be going to spend Christmas with his Daddy and grandparents on Christmas Eve but will be back home with Mummy just after the New Year for a second Christmas with Mummy, Shane and big brother Samuel. Thank you everybody who has sent Lewis Christmas cards, thank you to the reindeers (4 so far!) for sending Lewis letters about what is going on with Father Christmas and his preparations for the big day, and thank you to pals who have sent Lewis Christmas gifts!
A wonderful December to everybody and let us hope that for us and all other children in need of answers that 2011 is the year we get our wishes!
Update 12th October 2010
I can’t believe it has been three months since my last update! It’s been so very busy here!
Lewis is growing very fast, is becoming very tall and heavy, spending lots of time in his stander at home and continuing to practice holding his head up! Unfortunately, because he is getting so heavy, I did slip and drop him while trying to lift him off the bed about a week ago, and so we had to go to A&E to get an X-ray on Lewis’ foot to check it wasn’t broken! Luckily, it was just badly sprained, but it is hurting Lew and so he has been off school for a week, but we hope he’ll be happy enough to return on Monday.
Lewis will be changing bedroom soon (hopefully by Christmas!) as we live in a private rented bungalow and our landlord has just agreed to a 5 year tenancy so we can get some adaptations done! Lewis is swapping bedrooms with his big brother Samuel so that he can have his bath and bed and other equipment all in one room complete with ceiling tracks and a hoist! So that is exciting! Luckily, all the items Lewis received from a charity via Post Pals for his ‘In The Night Garden’ room makeover can be moved to his new room once it is finished! We are also hoping to get accepted by a charity that does ‘sensory gardens’ as Lewis loves being outdoors and we know he would love his own little sensory garden at home.
Lewis got his Lyme Disease test results back from the hospital in America and again they were negative so it is now time for us to put that behind us and look to other reasons why Lewis became ill when he was 2 years old. We continue to hope that we will find a cure for him and that one day he will be able to walk and talk and eat again.
Lewis has received lots of lovely post from Post Pals and I always try to take photos and put these on his facebook page and tag in Post Pals so everybody can see him! Most recently he got a very cool smiley face wrist band (bracelets are for girls!) which he was very happy to wear and it looked very cool as it matched the t-shirt he had on!! Lewis is looking forward to Halloween and we will be hollowing out a pumpkin to make a Jack O Lantern and will hope for some trick or treaters to visit (but only for treats please!). Lewis loves to meet people, especially other children, so children in fancy dress is the ultimate enjoyment for him!
Lewis now has just two kittens (Patrick and Tigger) who are huge and they love to sit with him on his chair or bed and keep him company. Unfortunately, April died in the summer, and we were so sad but then we heard about another little kitten who had nowhere to live and as she was a little girl, we couldn’t resist, so now we have Aoife too and although she is tiny, she thinks she is as big as the boys (who are 4 months older than her!) and they have such fun together. Aoife’s favourite place to sleep is with Lewis and he loves her – she always makes him smile!
Lewis has another ‘pet’ now too… Domino the Dalmatian! Domino was sent to Lewis by Post Pals and we receive regular updates from Domino’s family who have all gone to live with the Post Pals children!
Things in the future for Lewis are a microarray analysis – this is very intensive testing of Lewis’ DNA which takes around 9 months to complete (all it takes from Lew is some blood I believe). The waiting list for the testing is around 2 years, but the results so far for children who have had the test have been positive – several children with totally undiagnosed conditions have finally been given a diagnosis. If we can get a diagnosis for Lewis’ condition, we can then look at a cure or if not at least have an answer. We are also awaiting an appointment for a SPECT scan which I think is like an MRI scan except its a video rather than a photo… so it shows where signals/blood/fluid, etc are going in the brain. That might give us some answers too! We are always looking in new directions to try and find some help for Lewis and are always open to suggestions – a lot of tests Lew has had have been as a result of people suggesting doctors/conditions because who knows? One day we might find the right one!
I’ll try not to leave Lewis’ update so long until next time! Apparently as I type, it is 77 days until Christmas! Help! Thanks again to everybody for taking time to contact Lewis, to send emails, postcards, letters, cards and gifts! Lewis always recognises his Post Pals post and always has a huge smile!
Update 29th June 2010
Not much to update. Lewis is still doing well on his antibiotics and we are hoping to get another MRI scan done soon to see if there have been any more changes to Lewis’ brain.
Lewis went into hospital for day surgery recently to have his PEG (stomach feeding tube) changed into a button (easier, more compact). Unfortunately, Lewis has grown so much since he had the original PEG put in three years ago, that it wasn’t possible to give him a ‘button’ – the hole in his stomach and the hole in his skin had grown too far apart!! So he’s got a sparkly new tube for now and we hope to try again with the button in a few months!
Lewis is going to a hospital near London next month to have some bloods taken for some specialist tests to be done at a Lab in America so we will hope to get something useful from them.
Lewis’ kittens are growing fast although he only has three now. Sadly, we lost one of them to a car accident. We are all very sad, but the two brothers and sister left behind have become super affectionate which Lewis absolutely loves!
Lewis recently spent the weekend at his Daddy’s house as his aunty and cousins were visiting from Australia. It has been almost a year since he last saw them so he had a great time catching up with the family and having his cousins sing and do shows for him – I believe the videos are on Lewis’ facebook page for all to enjoy!
Thank you to everybody for the emails, the letters, and the postcards Lewis has received. I am sorry that sometimes there is quite a delay in responding to them – sometimes it really can get super busy here!
Best wishes to you all from all of us until next month!
Update 26th April 2010
We have been brave this month and re-started Lewis on his antibiotic therapeutic treatment to see if we can re-gain the improvements we saw in him last year (i.e. holding his head up for prolonged periods of time and trying to speak and reach for things). Since we stopped the treatment in December (due to increased seizures and hospitalisation) Lewis has lost his head control completely and doesn’t try to speak at all or seem to have any control over his reach which has been very sad, but we needed to sort out the seizures before they did some serious damage to his brain. Now the weather has started to improve, it seems like a good time to start over as Lewis is usually (fingers crossed!) very well in the spring/summer months and he looks great with a little bit of a tan!
Lewis’ cat Chelsea had her 4 kittens – Patrick, Blondie, Tig and April! They are such characters and now they are almost six weeks old Lewis loves to watch them playing around and they are very happy to climb all over him and keep him entertained!
Lewis’ neuro-physiotherapy with Anna is also going really well and we really do feel that Lewis is benefitting from the weekly sessions. Now that Lewis is back on his antibiotics, we might even see some bigger improvements than before!!
Lewis’ big brother Samuel will be 17 next month – very scary how fast time goes by!
Lewis has received so much post this past month from Post Pals, he’s had something in the post almost every day! I have put photographs on his Facebook page of Lewis with his post so if you have sent him something, please do take a look at Lewis’ photo albums or visit his website!
That’s it from us for now – its so very busy here, sometimes I just don’t know where to start! Love to all of Lewis’ friends until next time!
Update 3rd March 2010
February was Lewis’ 6th birthday month so it was definitely up and down. Part of me was very excited about my little boy being a year older, but another part of me was so scared and hurting because Lewis can’t do the things he could do before he got ill… the things a 6 year old should be doing… so I’ve had a few tearful episodes. As usual though, Lewis’ smiley face has cheered me up and Lewis’ older brother Samuel has helped me loads with hugs and heart to heart chats – for an almost 17 year old, he’s a top young man!
Lewis’ health has been up and down this month. He’s had a mild chest infection and a severe tummy bug and had lots of time off school and in bed watching DVDs! He had a brief visit to hospital for assessment and to get some antibiotics then it was straight back home again – we are trying not to stay in unless it really is very serious. Lewis is better off at home where we can care for him properly unless he needs very intense monitoring / treatment that only the hospital can provide.
As physiotherapy is inconsistent and patchy (I am guessing due to huge staffing issues?) here in Doncaster, we recently got in touch with a paediatric neurological physiotherapist to come and assess Lewis. The assessment went really well and Lewis’ Fund is going to pay for Anna to come once a week. Lewis had his first session yesterday and although it wore him out and he found it quite difficult, we know that it will help him hugely so we’re very excited about that. We are also waiting for Lewis’ new antibiotic prescriptions to arrive as we are re-commencing his intense antibiotic treatment programme now we have ascertained why his seizures increased massively in December (the antibiotic he was on for 6 months increased the levels of anti-epileptic medication in his liver – when we changed antibiotics at the beginning of December, the anti-epileptic levels effectively dropped, hence the increased fitting – Lewis’ medication has now been increased and he will be even more closely monitored this time around).
Lewis’ cat Chelsea is going to have kittens! She is huge and waddles a lot! Her kittens are due mid March so we’re very excited about that!
So on to Lewis’ birthday party – what a fantastic day Lewis had! He got so many wonderful gifts from friends, family and lots of Post Pals posties! There are photos on his website and also on his facebook page! Lewis had a Science Boffins party – James Boffin came to our house with his white coat and his experiments, and he performed stinky, messy, exciting, fun experiments for and with the children! It was a great entertainment and we will definitely be meeting up with James Boffin again in the future for more science fun!
As usual, thank you Post Pals for your amazing work. Samuel asked me the other day how Post Pals started and who did all the work… I explained about Viks and how we had met at the Post Pals party last summer – I might even be able to get him to come along this year!
Update 4th February 2010
What a mad couple of months! As you may remember, Lewis was in hospital a lot of December due to his massively increased seizures. We took him off his antibiotics while we tried to work out why he was having so many seizures instead of the 2-3 a month – he was having a seizure every 5-7 minutes constantly – he was exhausted, we were exhausted – and we didn’t know what to do. Lewis came out of hospital on 24th December but was ill on Christmas Day. He did friends – thank you so much! A very special package Lewis received was from a class of students in Korea! Each student had hand-drawn Lewis a little Christmas card with a personal message. He loved to read these and to look at the drawings and I will take a photograph for Post Pals as the students heard about Lewis on the Post Pals website!
At the beginning of January Lewis had another cluster of seizures resulting in a visit to A&E at which time he had to be given so many drugs to control the seizures that he did actually stop breathing. It was the most terrifying moment of our lives, seeing Lewis lying there, unconscious, covered in wires and tubes, and then for him to go completely still. All the alarms went off and the crash team came running down the corridor into the room. I was just a screeching headless chicken, running in and out in a major panic and shouting at Lew to stop being silly (funny the things you say when you panic!). Anyway, after a short while the team got him breathing again and he remained stable (but still unconscious) for several hours. The medicines did their job though and he has been seizure free until this past two days where he has had two single seizures – I am very very nervous about giving him any rescue medication after what happened last time, although I know the time will come when I will have to so let us hope he doesn’t need so much this time and that he recovers quickly from the next seizure cycle.
Since Lewis has been off his antibiotics, his head control and improved cognitive abilities have gone, so we are very sad about this and keen to re-start the antibiotics, but without the suspected side effect of increased seizures. It’s going to be a difficult time but we want the best for Lewis and of course we want him to get better. Hopefully one day we’ll be able to find out what is wrong with him and then find a cure – what a miracle!
We are now looking forward to Lewis’ 6th Birthday at the end of this month. Lewis is having a science boffin party – lots of fun, colourful, noisy experiments to watch! Lewis has grown a huge amount in the past couple of months and continues to grow out of all his equipment! We are hoping to apply to a charity to take Lewis to Walt Disney World in Florida later this year. We feel Lewis is now old enough to appreciate this and we hope he would be well enough to travel – the charity arranges specialist seating on the flights so this would be such a huge thrill for Lewis to enjoy – we’ll see and let you all know!
Lewis continues to receive letters, postcards and gifts from Post Pals friends and he is always very excited to see his name on the front of envelopes! As December and January have been so very busy and stressful, I haven’t had much chance to update Lewis’ website with photos of him with his Post Pals post, but I will be doing this shortly.
Lewis continues to enjoy school and is doing well on his eye computer!
As ever, thank you Post Pals and friends for everything. What would we do without you?!
Update 4th December 2009
Lewis has been very poorly recently, having lots of seizures and therefore spending a lot of time in ambulances and in hospital. He is in hospital now as his seizures are not stopping at all and his usual rescue medication has not been able to stop them. Lewis is being tried on an extra strong anti-epileptic drug and if this doesn’t work then they may have to anaesthetise Lewis (like a drug induced coma) while they try to work out what is wrong.
We have put our Christmas decorations up at home but Lewis hasn’t been able to see them as he’s been in hospital since 1st December. He is being well looked after in hospital though and there are pretty lights up for him to see here.
Thank you very much to Post Pals for the postcards, cards and letters Lewis has received in November. He does have a couple of cards at home that have arrived from Post Pals which we haven’t opened yet – if he is in hospital for much longer we will bring them in here and decorate his room with them!
Update 2nd November 2009
It has been very busy here since our last update. Lewis has been on his antibiotic treatment for suspected Lyme Disease (although this still hasn’t been confirmed) and we are awaiting further tests. Lewis is due to have nerve conduction therapy and a sleep deprivation EEG on 2nd December. We are also still awaiting detailed feedback on a recent MRI scan which showed changes to his brain. Lewis continues to grow and is becoming very tall and heavy! He’s definitely having a growth spurt! He has been managing really well (fingers crossed!) with his feeding programme and so this has helped his weight a lot and has also given him a bit more strength in his neck area so he can hold his head up for a few minutes at a time now if it is gently supported.
Lewis has received lots of post from Post Pals posties – he received a blanket, some garden lanterns which we will try setting off on 5th November, he received some lovely books and a glove puppet elephant, he received some very spooky Halloween cards and a Halloween candle! Thank you to everybody for his lovely postcards, cards and letters! Lewis loves to receive post with his name on and does get very excited! We do try to remember to take photos of Lew with his post and I will get around to putting these photos on his website soon!
Lewis is loving school and enjoying baking (although of course he can’t eat what he bakes so Mummy and big brother have to help out there!). Our two cats have taken a shine to Lew, I think they realise now that he won’t pull their tails, so they like to spend time sat with him which he loves! He finds it especially funny when they jump on the side of the bath in the mornings! We also have two chickens which are now huge and Lewis finds these very amusing when they are running and flapping around the garden!
Lewis still loves In The Night Garden… his favourite episode is when the Tombliboos clean their teeth… so I have recorded this one for him to watch! He laughs out loud when watching this one which is great to hear and see! He is, as ever, a super happy young man who never fails to charm everybody he meets!
Thank you once again Post Pals for everything!
Update 3rd August 2009
Lewis’ health has been up and down this past month. He’s definitely showed some signs of improvement, so we are now wondering if it’s the antibiotics we are paying for him to have to treat the possible Lyme Disease, or if it is just the nice weather we’ve been having! Lewis is definitely more in control of lifting up his head and turning his head to look to either side which is pretty special! He’s been on the antibiotics for 3.5 weeks now and we hope to see further improvements in the next couple of months at which time we will decide whether or not to continue with the medication.
Lew has an MRI, lumbar puncture and blood tests under general anaesthetic booked for the end of this month, so that’s a bit scary given how badly he reacts to anaesthetic. It’s for a good reason though so fingers crossed we’ll get some good news from the results.
In the past month Lewis has been to Scarborough with Mummy, where he wasn’t very well with a 48 hour bug, and then to Blackpool with Daddy, Granny and Grandad where he had a great time.
Lewis’ kitten Chelsea entertains endlessly as do the 2 chickens we now have in our garden!
Thank you Karen Sami for the lovely cards that always cheer us up. Thank you to Sarah for Hugo Mouse who goes everywhere with Lew and also to Helen for the Winnie the Witch books and CDs!
Update 29th June 2009
It has been an immensely busy couple of months. After Lewis had blood tests sent away to a private lab in Germany in May, we were told that he had tested positive for Lyme Disease. This was amazing news as it might mean that Lewis could be cured in some way. Of course the first question was if Lewis was ill because of Lyme Disease or if it was just something else that he’s got but that is not causing his current undiagnosed condition. Since then we have hit a brick wall as far as treatment is concerned. There is so much controversy around Lyme Disease (even its existence is questioned by some) and so we are fighting now to get Lewis started on antibiotics because we feel that we must try. If the antibiotics don’t work, at least we can say we made this effort for Lew. And if they do work… it will be a miracle!
Lewis has been in hospital this month due to increased seizures and unexplained rashes. He is home now but definitely not 100%.
He has got a new kitten called Chelsea who loves him! She sleeps with him, climbs all over him, purrs at him, and makes him laugh and smile! Lewis is also a lot more ‘talkative’ (trying to vocalise) which is wonderful for us! He is so happy at the moment and it is always great when Lew is having his up periods as it helps us through the bad times when he is very ill and not our bubbly little man!
Thank you to Karen for the Iggle Piggle t-shirt and thank you to Sarah for the ‘book about me’ which Lewis loves! We are looking forward to the Post Pals party this weekend and hope to see some posties there!
Update 31st March 2009
Well Lewis is 5 years old now! We have had a busy time with him having tests for various conditions – always searching! He had the conclusive test for Lyme Disease and this did come back negative. We are still pursuing the possibility of 3 months IV antibiotics to see if there is any chance that the test was not correct (apparently this can happen with Lymes – it is a very elusive disease to pin down!). We also have on the horizon some new tests for Lewis. We are waiting for an appointment for nerve conduction testing – where small electric shocks are passed through Lewis’ nerves to see how fast (if at all) they travel from one place to another. Also, Lewis’ hospital is getting a new super MRI scanner in April and Lewis is on the waiting list to have a scan on this machine to see if it can pick up anything that his other regular MRIs have not. We are also hoping to see a brain specialist about the possibility of Lewis being suitable for deep brain stimulation surgery – so lots of things coming up. Lewis’ hip surgery has been cancelled. We were not happy to go ahead with the surgery once we realised how permanent it was (cutting his abductor and adductor muscles) given that there is a chance of recovery – as long as we have no diagnosis at all, then there is always hope. With Lewis, he has absolutely no diagnosis, not even some vague idea. The medical profession is totally confused by him which is good in a way as it means he is quite high on the new tests list!
Thank you so much to pals for Lewis’ birthday cards and presents at the end of February. I put photographs on his website. Thank you for the lovely cushion he received from SOLAR (Stitches of Love and Kindness). Also, thank you to Post Pals for his teddy bear! Thank you to pals who send Lewis and Samuel regular postcards and letters! We even found a letter that had got ‘lost’ in the house move at the beginning of February from Post Pal Leona so that was a lovely surprise! We have now moved house completely and the bungalow we are in is fantastic! We are just renting so we hope the landlords decide to let us rent it for a long time as we are very happy here!
Lewis has a new carer, Rachel, whom he adores! She is young and pretty and blonde and he absolutely loves her! Samuel is doing really well at school and is approaching his exam time now before going up (fingers crossed!) to Sixth Form in September. He’s working really hard and making good grades!
Update 24th February 2009
Sorry for the long wait for an update! We have been very busy moving house! We are now in a fantastic bungalow which is absolutely perfect for Lewis and is huge so is perfect for me and Samuel too! We have a huge garden so Samuel has his trampoline back up and we now have telephone and internet and Sky too so everybody is happy!
We have postponed Lewis surgery – we got a date for end of March – as he has recently had tests for Lyme Disease. You may remember Lewis appeared in The Daily Mail in September 2008. From that article, we had 60+ messages from people suggesting Lyme Disease. A few things have added up (Lew was bitten by an insect in Southern France in September 2005 and started to get ill in December 2005) so The Lewis Jeynes Fund has paid for Lewis to have specialist tests for Lyme Disease and we are awaiting the results. If it did by some miracle turn out that Lew had Lyme, he could be almost completely cured! So having surgery which is irreversible (cutting muscles) is not an option until we are absolutely sure we are ready for that step. We saw the specialist (Dr Daymond) at Nuffield Hospital in Newcastle on 9th February and the results should be back from the tests in 3-4 weeks. Fingers crossed!
Dr Daymond has also suggested that Lewis see a brain specialist in London so we are hoping for an appointment with him soon too.
It’s Lewis’ 5th Birthday on Saturday! Wow it has come around fast! It’s a happy time because we didn’t expect him to see his 3rd Birthday, but it is also sad because it means he has been ill for 3 years.
Samuel is doing really really well at school – preparing for his exams! He is doing lots of extra revision lessons and he is feeling really confident so that is great!
And Spring is on the way so we’re all feeling great!
Thank you so much to Post Pals for the lovely postcards, cards and letters we have received. Lewis got some valentine cards too – the only ones in this house!! We got two amazing postcards as well – made from material. They have pride of place on display for everybody to see!
Update 11th December 2008
We had a hospital appointment today and I thought it was just a routine one so was totally unprepared. Lewis is going to have to have surgery on his right hip due to the problems with his positioning. He has slight dysplasia and if it continues and is not dealt with now, his hip socket will erode and it will not be fixable. So he has to have something done to the soft tissue around his hip joint (not completely sure what – got an appointment in the New Year to go over details) and he will be in braces and plaster for 6-8 weeks. If this doesn’t work, he will have to have something done to the actual hip joint bone so it was quite a shock.
Other than that, he’s been great and he loves getting all his Post Pals letters, cards and presents!
Update 25th November 2008
Lewis is not very well (lots of seizures, twitching and temp spikes) so we’re going into the Bluebell Wood Children’s Hospice this afternoon for a few days.
A HUGE thank you to Love Quilts UK for Lewis’ wonderful ‘transport’ quilt which we received yesterday.
Update 7th November 2008
Sorry for the delay in an update. We haven’t had access to the internet until just this week!
In August I separated with Lewis’s dad, and so Lewis, Samuel and I have moved into a new home which isn’t very practical as it is a 3 storey town house with lots of stairs, but we will find somewhere more suitable early next year!
Lewis has been poorly a couple of times since we last did an update. In August he had a severe chest infection and suspected strep infection and was in hospital for a while. He eventually recovered but then got another chest infection in October and was in hospital again for a few days. He’s feeling a lot brighter now, although autumn and winter are the time for chest infections and children like Lew are much more vulnerable to these so it’s always a difficult time – lots of staying indoors and keeping warm!
Lewis has been enjoying learning more about his eye computer at school and we have been very lucky to borrow an eye computer for home for 3 months from a charity called Special Effect (www.specialeffect.org.uk). As Lewis learns how to use his eye computer more, he will eventually be able to communicate with us by eye pointing which will be amazing!
We do still have hope for some kind of miracle and that Lewis will one day get better and be able to walk and talk again, but there has been no breakthrough for Lew, even though we did get lots and lots of feedback from a lot of very kind people after Lewis appeared in an article in the Daily Mail in September. Lots of suggestions were made as to why Lewis is like he is, but sadly all the suggestions had already been explored, or once passed on to Lew’s medical team, were not conditions that were relevant to be looked at or further explored.
Thank you very much for Lewis’ and Samuel’s Halloween packages! They were a lovely surprise! We didn’t get to go out as it was way too cold and Lew had just got over a chest infection. Lew received two books, Crazy Cats which he loves to look at, and a great book about Christmas which has Lewis’ name in! We are saving that for December when we get all Christmassy at home! Lew’s favourite gift has got to be the Hoob he received! He loves it! Every time he sees it, he has a huge grin! And we now try to catch the TV programme now and then so that our Hoob can watch with us – thank you very much! Thank you for the great Halloween bags for Samuel and Lewis! They were a lovely surprise! We weren’t able to get out trick or treating because of Lew’s chest being vulnerable but Samuel got to go out with a friend and her children which he really enjoyed!
Update 4th June 2008
Not much has happened this month. Fingers crossed, Lewis has had a good month and so we’ve been quite steady and just got on with normal life day to day!
We have had some visitors over half term which was exciting but tiring for everybody and Samuel had a birthday (thank you so much to all the Post Pals for Samuel’s lovely cards and gifts!)
June and July are much more busy for us – me and Lew are going on a 3 part holiday this month – we are visiting our friend for the weekend, then going to butlins for the week, then visiting Declan K (Post Pal) for the next weekend – so lots and lots to do!
Thank you to all Lewis’ Post Pals for his cards, we love to receive them.
Lewis is looking forward to going back to school tomorrow after the half term holiday and then a training day on Monday.
He had an appointment with his surgeon and his PEG is absolutely fine and should last him another couple of years so that’s good news. We are feeling a bit like Lewis has been forgotten by the neurology department though, so we are going to be nagging them for some more tests, as it’s now 2 years since Lewis became ill and we still don’t know what is wrong so we want to see if anything has changed – so I think another MRI is on the cards!
Update 24th March 2008
Thank you to Post Pals for all Lewis’ lovely Easter cards!Especially thank you to Kate W for your letter card, to Karen (Sami) for the lovely bunny card, to Julie Barrett for the funky bunny card, Kate Dee for the squidgy dinosaur card, and to Marie and Michael, and Martin Jackie and Jamie for their lovely surprise Easter cards.
The cards are on Lewis’ dayroom windowsill at the moment, but will go on his Post Pals wall in the playroom soon!
Update 3rd March 2008
Wow what a busy year it has been so far! February was super busy with appointments and visits and of course Lewis’ 4th Birthday! Lewis had the most wonderful day and he got so much post from Post Pals arriving from the first week of February. I kept it all hidden away until his birthday so he had a really big surprise! He was quite tired early on his birthday when we opened his cards and gifts but later on he brightened up and had a wonderful time at the local bowling alley with his friends. On Sunday we had his ‘proper’ party with an entertainer and his puppet called… LEWIS! It was great fun!
Health-wise, Lewis has been doing really well (fingers crossed!) and is absolutely loving school. After Easter he will go to school for 3 days and will also be going on the school bus which will be very exciting for him!
A big thank you to all Lewis’ Post Pals who have sent him so many cards, gifts, postcards and letters this month. You certainly have made his birthday very special and there are lots and lots of photos on Lewis’ website to prove it!
Update 3rd February 2008
We had a great Christmas although Lewis was ill in November and in December, particularly on Christmas Day and Boxing Day, but fingers crossed so far this year he has been doing really well! His PEG site was infected so he had to have antibiotics for that, and with the infection he did have increased seizures, but once the infection was gone, he was back to normal again.
The most exciting thing about January for us was that Lewis started school! He goes on a Monday and a Friday for around 5 hours and he absolutely loves it! It was very difficult at first to leave him, but its getting easier and he is already signed up to go an extra day from after Easter! He does baking on a Friday at school, and on a Monday he has communications sensory assessment so the school can assess his abilities and preferences and how to help him to communicate. We are so excited that one day soon Lewis might be able to communicate with us in some way by using switching.
We still haven’t been able to get Lewis in his pool (which was donated by Make A Wish Foundation) as the weather has been either too wet or too windy! But Lewis still loves his bath every morning!
We are now preparing for Lewis’ 4th birthday! This is a very special time for us as we didn’t think he would have a 3rd birthday, so to be celebrating his 4th is so super for us all!
Thank you very much to Post Pals and posties for all the wonderful Christmas cards and gifts Lewis and Samuel received – too many to count! Thanks also to our regular Post Pals for our post in January. Receiving a postcard, letter, gift or even an email really does make us smile. Lewis recognises his name and so we always show him the envelope when we receive Post Pal post so that he knows it is especially for him!
Happy New Year to everybody! Let’s hope 2008 can be good to us all.
Update 4th December 2007
November was not a very good month health-wise for Lewis. I knew there was something wrong, I just couldn’t point to what it was, but he wasn’t himself. He was under the weather, not very happy, and generally not well. We made several visits to the assessment unit at the hospital and finally Lewis was admitted with pneumonia, so we spent a week in hospital and then the rest of November at home avoiding people (germs!) and trying to get Lew back to full health.
Lewis’ new bedroom is now complete and he has started sleeping in there properly. His new bath was plumbed in last week so we are still getting used to that, but Lew enjoys it! He has not been able to go in his spa pool from The Make A Wish Foundation, but we hope to when it stops raining, now that he is better!
Thank you to all who have sent us emails and cards. We really do appreciate it very much. Thank you very much to Sami (K) for the get well card for Lewis and also to Despina Ropa for the lovely Christmas card all the way from USA!
Update 31st October 2007
Well it seems that each month we are super busy! This month Lewis had five really big and exciting things happen! First of all we went to an open day at the Bluebell Wood Childrens’ Hospice near Sheffield which will open in Easter 2008. It has been an ongoing project for some time now and it is finally getting to a stage where the families of children who are cared for in the community by the Hospice could go and have a look around. It was a very emotional day, enjoying the atmosphere and the surroundings, but at the same time knowing that we all there because we have a very poorly child. Lewis got to meet some Star Wars characters as well as making eyes at lots of pretty ladies!
Next up was going to London to collect Lewis’ Bravery Award at the Best Wellchild Childrens’ Health Awards 2007. Lewis was presented his award for bravery by Mark Foster, an Olympic and Commonwealth champion swimmer. Lewis loves the water and so to have his award presented by someone who also loves water was very special for us. Lewis was also presented with a special anniversary award to mark the 30th anniversary of the Wellchild charity, and this was presented to him and the other children by Prince Harry himself! It was amazing to meet with Prince Harry, he was so kind and caring and really interested in the children who had won awards. We got to meet a wonderful young lady called Natalie Robinson who also won a bravery award and who also lives very close to us, so that was very exciting too as Lewis loves young ladies, especially blonde ones!
We had an overnight in a hotel in London and the following day we went to London Zoo! Unfortunately it was very busy, as it was half-term week, but we did get to meet up with Lewis’ aunty Nicola and cousin Evie who live in London, as well as our friend Catriona and her two daughters Tilly and Eliza who also live near London and who we rarely get to see. Most exciting of all, Lewis finally got to meet his buddy Nathan Bovell who is very much like Lewis in his undiagnosed condition, except Nathan was born very poorly and Lewis was fine until he was 2 years old. Again it was a very emotional day with lots of cuddles and kisses and tears, but lots of happiness and smiles too.
Back at home it wasn’t long before we were packing again for our mini holiday in Cleethorpes. As you may recall, in August, we were taken by a charity to Disneyland Paris, but Lewis was so ill and ended up in hospital there. So we decided to try again with a little holiday at a local seaside resort (just one hour away from home) in a caravan. Unfortunately Lewis was again very ill and we had to take him to hospital in Grimsby and then bring him back home to our own local hospital here in Doncaster so that was another holiday cut very short by illness.
Lewis is still not 100%, but for a few days he was very very poorly, and reminded us of December last year when we didn’t know if he would reach his 3rd birthday. Because of his condition, he can become very ill very quickly, so when he shows small signs of illness we have to think fast to prevent him getting much much worse.
The final exciting thing for Lewis this month has been his sensory room. We have been fundraising to buy Lewis some sensory equipment and it arrived this month so Lew now has a wonderful place to relax and chill, and that has come in very handy this past few days with him being so unwell.
And so today it is Halloween! Lewis is well equipped with his sticky spider web, his glow in the dark skeleton, and his fab spooky Halloween cards from posties Kate Dee and Karen (Sami) Winch. Thank you so much Kate and Karen for your lovely gifts and the cards which are super creative and which will (after Halloween) go on Lewis’ postie wall.
A huge thank you as well goes to Helen B for Lewis’ blue card for his new bedroom. Everybody who has a look at Lew’s new room always has a look at the card and says ‘I wish I could do things like that!’ It is on Lew’s windowsill and will be put in a frame when he finally moves in! At the moment we are waiting for his bath and bed to arrive!
Update 5th October 2007
September was a very busy month for us. We have been catching up on all the activities that were not available during the school holidays, enjoying music and massage and catching up with Lewis’ friends.
We visited a local school and Lewis will hopefully be starting there (just half a day a week) in January. It’s a school for children with physical disabilities and it offers some amazing equipment and experienced staff, so we might even be able to get Lewis communicating with us in some way, because at the moment all he can do is make choices with eye pointing, and smile to let us know he’s happy or cry if he’s sad.
The conversion of our garage into a bedroom/bathroom for Lewis is almost complete and we are very excited about it! Lew has been able to choose the paint colour for his walls and he is having blue! Also, his new indoor chair has arrived. He had a giraffe chair which he grew out of as he is growing so fast! So he now has a very cool BLUE triton chair which he loves!
We had results back from his tests taken in July and they were all normal, so we are having a rest from tests for a year or so. Lewis has definitely grown out of his reflex anoxic seizures, which is AMAZING! And (fingers crossed) he hasn’t had an epileptic seizure for almost 2 months!
We are excited about going to collect Lewis’ award later this month for Best Brave Child age 2-3 years, through the Best magazine and Wellchild Charity Children’s Health Awards 2007. We will be getting Lewis a smart outfit to wear to collect his award, I have a feeling his outfit will be blue! It’s his favourite colour at the moment!
Fingers crossed, Lewis’ health has been good over the summer except for the odd temperature spikes which come for no reason and go within 24 hours. We are hoping that this winter will be a lot gentler than last year when Lew spent a lot of time in hospital.
He is such a handsome young man, he’s so brave, he has a wonderful smile and we are so proud of him!
Update 31st August 2007
Doesn’t seem like a month since we did the July update! August has been very, very busy!
At the beginning of August we went to Disneyland Resort Paris with a local charity called Bati-About-Kidz. Unfortunately, Lewis was ill and ended up in hospital while we were there so we didn’t get to see much of Disneyland, but thank you very, very much to the charity for taking us.
Our friend Mike ran and completed the Monschau Marathon in Germany on 12th August and raised lots of money for Lewis’ Fund so that we can purchase sensory equipment and a touch screen computer for him eventually!
Lew’s PEG is doing really well, we’re pretty much used to it now and it’s so much easier to use than his NG tube was! Lew is continuing to grow and we are now awaiting his new indoor chair as he has grown out of his giraffe chair already! We are also waiting for work to start on converting the garage into a bedroom for Lew so that we will no longer need to carry him up and downstairs for bathing and bedtime. We are very excited about the new room as once it is complete we will be able to purchase some sensory equipment with the Fund.
Some exciting news – we approached the Make A Wish Foundation about Lewis having a wish from them and they have (in principle) granted his wish so we are waiting to hear more about that – will let you know when we hear!
And some very, very exciting news – we are 99% sure Lewis has grown out of his reflex anoxic seizures!!! Lewis has been having these since he was around 6 months old – it is an involuntary reaction to pain or fear which would cause Lewis to stop breathing, his heart to stop beating, his brain to flat line for a few seconds. During this time he goes blue and stiff and then very floppy before taking a breath and coming back round. It is very distressing to watch and at one point Lew was having these several times a day (he developed a fear of being laid down on his back). He hasn’t had one for a whole month so fingers crossed they have gone for good!
Later this month Lewis and I had a little holiday in Scarborough (just for one night) and enjoyed visiting the Sea Life Centre, Scarborough Castle, and walking along the promenade enjoying the sights, smells and sounds!
We are looking forward to the schools starting again after the holiday so Lew and I can start going on days out again! During the school holidays, everywhere is so busy that it makes visiting attractions very difficult with a wheelchair, so we are looking forward to getting out and about again!
A quick THANK YOU very much to postie Karen (Sami) for Lew’s giggle stick, wiggly snake and very cool train card! A big hello to Lewis’ two regular posties Sian and Lawse.
Looking forward to September!
Update 1st August 2007
July has been a very busy month for us! We met up with some very good friends for a fantastic Fun Day and Lew had his face painted! I don’t think he was so bothered about the face painting, but he fell in love with the very attractive young lady who was doing the painting and enjoyed the 20 minutes he could gaze into her eyes!!
Lew’s nasal gastric tube decided it didn’t want to stay put and it came out several times this month. It was very frustrating as it is such hard work for Lewis and for me to have to re-pass it, but it was lovely for Lew to have some time without the tube during the day, to have a rest!
Lew had a few big seizures earlier this month, we could tell he was under the weather but could not pinpoint the exact problem. He didn’t have a temperature, but he wasn’t himself and it was clear he wasn’t feeling very well. He has more seizures when he is poorly and he was having on average 2 a day for a few days but thankfully that passed after about a week.
The week before Lewis’ surgery we avoided everybody! We didn’t leave the house very much (which wasn’t difficult with the terrible rain and flooding) but we got very bored not seeing anyone!! We didn’t want Lew to catch a bug just before his surgery though and have to have it postponed!
On Monday 16th July, Lew was admitted to Sheffield Children’s Hospital for his PEG surgery. The op went really well, Lew came round from the anaesthetic much better than expected and we were able to go home on the Thursday, having done the fast track course on PEG care! Lew looks so much better without the ng tube taped to his face and of course he can breathe much better too because it’s blocking his nose and his throat.
The stoma did become a little infected so Lewis is now on antibiotics (oral and cream) and it has cleared up very nicely, however it is now over-granulating which is when the skin tries to heal over the stoma site…! So we are awaiting some magic cream to hopefully ‘dry it out’, but if that fails, Lew will have to have it cauterised, but that is a last resort. Feeding and giving meds via the PEG tube is so much easier as well! It’s great! No more ph paper testing! Hooray!
While Lewis was in hospital he also had substantial bloods taken (for various testing) and a rectal biopsy. The results of these tests will take some time to come back as they are rare tests which require specialised culturing, etc. We have already been advised that the conditions that are now being tested for are very rare, are untreatable, and are incurable – but the general medical opinion is that they won’t find out what is wrong with Lew – that he is an enigma!
I found out just last week that Lewis’ dad had nominated Lewis for an award – the WellChild and Best Magazine Children’s Health Awards 2007. I found out because the organisation telephoned me to say that Lewis had won the Award for the Best Brave Child 2-3 years old category! So in October we will (Lew’s health permitting) be going to an awards ceremony in London to collect Lewis’ award!
A friend of ours is running a marathon in Germany to raise money for the Lewis Jeynes Fund on 12th August, and so I have been given the job of printing his special t-shirt to wear on the day! I have sneaked the Postpals logo and website onto the t-shirt so let’s hope we can get some more post for our pals!
Thank you to pals who sent Lewis Get Well cards while he was in hospital and when he had come home. Thanks to Sian who is a regular Post Pal for Lewis and sends us letters often. Thank you to Post Pal Helen who sent Lew a lovely windmill! Thank you also to Post Pals Sian and Jamie for the fab stickers! Thank you Post Pal Declan for the wonderful glowing monkey! And thank you to Nathan for the bouncy boingy monkey!
Update 5th July 2007
Lew has been stable for most of June, however as we have moved into July he has started to deteriorate noticeably and have more seizures and absences than he has done before. He is not as ill as he was at Christmas, but he seems to be heading that way, so we are hoping that he will be able to fight off whatever it is that is making him ill. He is also struggling with his head control and we are looking at a new car seat as his head flops forward almost constantly now and blocks his airways so I need to pull over and put his head back so that he can breathe again. We have now moved his car seat into the front seat so that I can keep a closer eye on him while I am driving.
On 11th July, Lew should be in an article in the Daily Mirror in their Health supplement. Do look out for him (and the rest of us!)
On 16th July Lewis goes in to hospital for a rectal biopsy, blood tests for several very rare genetic conditions, and for a gastrostomy so we can say goodbye to the horrid nasal gastric tube for good (we hope!)
Please do think of Lew while he’s in hospital. We’ll be at Sheffield Childrens Hospital, Western Bank, Sheffield, South Yorkshire, Ward S1.
Thank you so much to fellow PostPal Declan K for the lovely STAR card and the glowing monkey and the totally cool Bob the Builder pyjamas!
Update 11th June 2007
Wow what a wonderful gift Lew received today from you all! It was the best surprise, as I was feeling so miserable because Lew pulled his tube out 4 times in the night and he is on night drip feed so it’s a major panic every time, especially when he just pulls it half out so it’s still going in but who knows where its dripping to – stomach or lungs? We were both soooo tired, fed up, miserable, and the postman said ‘oh I’ve got a parcel for you as well’ and Lew watched carefully as I unpacked and… well gorgeous!
It hasn’t got a name yet, but it hasn’t left Lew’s side since it arrived. It’s been to taekwondo with us this afternoon (to watch Lewis’ friends) and now it’s on Lew’s bed next to him so he can see it when he wakes up.
Thank you so much for making our day very special (again).
Update 6th June 2007
Lew has been stable since our last update. He is still very much enjoying his life to the full; he finds lots to smile and laugh at and enjoys meeting new friends and spending time with old ones! He always has a smile for the ladies, especially young, blonde ones!! We are seeing Lewis’ surgeon on Friday to discuss his forthcoming surgery and we expect a date in the next 3-5 weeks. Lew will have a rectal biopsy and quite a lot of blood taken (for the tests Professor Surtees of GOSH asked to be done) as well as having a fundoplication (putting a band around the top of the stomach to prevent reflux) and a gastrostomy (tube directly into the stomach rather than in his nose and down his throat as it is at present). Lew will really benefit from the gastrostomy and fundoplication as he really doesn’t like having the ng tube and its also very stressful for us as parents as we have the constant worry of it misplacing and there is a serious risk of milk/medicine/water being introduced into the lungs instead of the stomach. It’s a huge worry for us as Lew is on overnight drip feed so to have the tube going directly into his tummy will be a great weight off our minds, and will also mean that Lew will have a clear face, no more horrid plasters, and a clear nose and throat. Perhaps the biopsy and the blood tests will bring us back some results – we will have to see. The major worry we have with the surgery is the general anaesthetic. Lewis doesn’t do well at all under GA and we are very frightened, but it has got to be done so I think we just want it all over with as soon as possible so that we can come out the other side, hopefully all of us unscathed.
At home, we are awaiting building work to convert our garage into a bedroom/bathroom for Lewis as he is growing fast and is very heavy!!! We have some money from fundraising which we will use to buy sensory equipment and a touch screen computer for Lewis’ new room once it is finished.
Lewis should be in the Daily Mirror on 4th or 11th July so if you get that newspaper, you can take a look at us all!
Lots of love, hugs and very good health to all our PostPals and thank you to PostPals for Lewis’ fluffy bunny and his gorgeous hug blanket thing!
Update 4th May 2007
Thank you to all our Post Pals who have sent Lewis cards, letters and gifts. We so enjoy receiving them and it really does brighten our days.
Lewis has been stable this past month. We had our long awaited appointment this week at Great Ormond Street Hospital with the world expert paediatric neurologist. Unfortunately he feels there is no treatment for Lewis, but he has commissioned more tests to see if a diagnosis can be found – but he did say that the conditions they are testing for are incurable and do not have any treatment. All the tests can be done through bloods except one, which will require a general anaesthetic, as he needs to have a rectal biopsy to obtain a nerve cell. Apparently nerve cells in the rectum are very similar to those found in the brain and rectal surgery is a lot less risky than brain surgery. So we are waiting for that appointment to come through.
Once Lew has had his surgery, the Professor wants him to go on a 3 month course of maximum dose steroids to try and control his epilepsy. He said there are of course risks involved with large doses of steroids, but that if Lew’s epilepsy does respond to the steroids then they can look at long term treatment with reduced side effects i.e. giving a huge dose once a month.
We are really struggling at the moment with the hopelessness of Lewis’ condition. We are very sad and low, but we are trying so hard to keep positive for Lewis’ sake. We are going to contact the Make a Wish Foundation to see if they can do something really great for Lew because although his body is now almost completely useless, mentally he is totally aware of what is going on.
Please do look at our website which I try to update regularly with our daily activities and lots of photographs.
Update 3rd April 2007
Lewis has been stable for a couple of months now so we got a bit complacent, but this last couple of weeks he has been in hospital twice (once after 999 call for ambulance) as his breathing has deteriorated a lot and he is struggling with the simple action of breathing. We are concerned that this deterioration of his muscles is passing to the muscles around his lungs and this is affecting his ability to breathe. Lew is still ng tube fed and has real trouble with his secretions, so spends a lot of his time choking and coughing. He still smiles occasionally, but not as readily as before, as he really is feeling unwell at the moment.
He has also started to have a new type of seizure which is distressing him a lot as he is aware of what is going on and finds it very frightening, as do we, because it causes his entire body to go rigid, his back arches, and he gulps for breath. Luckily, it only lasts a matter of seconds.
Lew is currently on antibiotics to hopefully prevent any infection spreading to his chest and we await our appointment at Great Ormond Street on 30th April. In fact it can’t come around quick enough because we really are very worried about how quickly Lew is starting to deteriorate again.
Thank you to Post Pals for your lovely card and gifts. Also, many big thanks to Katie Plant for your letter and your card. I am so sorry we haven’t got around to replying yet but it has just been a bit crazy here recently.
Update 7th March 2007
Lewis’ condition has remained pretty stable these last few weeks. He’s losing small abilities, like he can’t blow kisses anymore or poke his tongue out to be cheeky. His weight is continuing to stay on track and he is soooo heavy now!!! I have muscleman arms!
We have our appointment at Great Ormond Street at the end of next month so things are just trundling along until then really.
Lewis’ seizures have increased recently; he’s been having a lot of absences too, so we are expecting him to have a major seizure in the next couple of weeks – not looking forward to that! Especially as so far after each major seizure, Lewis has lost more ability and to be honest he’s not got much left now. He can smile (and what a smile!) and he can turn his head slightly left and right.
Lewis is still on ng tube feeding and we’re pretty much settled into the routine now.
On 28th February, Lewis had his 3rd birthday. Two months ago, we didn’t think Lewis would make it this far, so it was a really very special day for us and we celebrated it in a big way! The house was in chaos, full of people, but it was so great. Lew had a great time but of course was absolutely shattered by the end of the party!
Lewis made an appearance in the local newspaper and then on the local TV news programme and from that we have heard from a charity called Bat-I About Kidz (based in Bradford) who would like to take Lewis (and us too!) to EuroDisney in Paris in August so that’s exciting. We just hope that Lew will be well enough to travel then. They do provide medical assistance and we travel in a ‘jumbulance’ so fingers crossed all will be okay. The hardest thing about not having a diagnosis for Lew is that we don’t know what might happen next. So we literally live each day as it comes and don’t plan ahead. Keeping positive and enjoying every day as much as we can.
Thank you to all the post pals who sent Lewis lovely birthday cards and letters. We were so impressed with the home made cards – they were awesome! He had the most wonderful birthday and I will be putting photos from his special day on our website very soon! Lots of love and hugs and cuddles to all our post pal pals xxx
Update 8th February 2007
Lewis’ swallowing had returned somewhat, so we tried him with some stage 1 baby food which he LOVED, but unfortunately there is still a huge risk of aspiration so we have been advised to stop the feeding or to give 1 or 2 very small spoonfuls a couple of times a day. As food has been such an important part of Lewis’ life before he became ill, it is actually more traumatic for him to have just 1-2 spoonfuls than to not have any food at all, so we have decided to wait a month or so and see how his swallowing goes.
Lewis’ dad’s company held their annual dinner in London this week and raised over £4000 for the Bluebell Wood Hospice and for Ward 31 at Doncaster Royal Infirmary, on behalf of Lewis which was awesome!
Lewis’ weight is back to normal after he lost 2kg before Christmas, hence our long stay in hospital. So, the tube feeding is doing wonders and my arms are getting super muscly again from carrying him around!
We are collecting his new (CATO) pushchair/wheelchair on Tuesday so we are very excited about that! At the moment he has a Maclaren Major buggy on loan, but it does not offer anywhere near enough support for him so we’re really looking forward to getting his new, custom-built ‘wheels’!!
I tell everyone I can about Post Pals. It is so awesome and I think more people should know about it! It has brought us so much happiness, just to know that people really do care, people who have never met us, don’t know us, but care enough to want to touch our lives.
Thank you to Laura (Lawse) for our cards, thank you so much to Helen for our lovely letter (love the paper!) and to Laura for your very touching letter. Thank you so much Jodie for the cassette of nursery rhymes, to Helen for the orange twirly thing (do they have a name?!) and for the cassettes – we particularly love Postman Pat Takes a Message!
Update 21st January 2007
Hello, I wanted to thank everyone for the wonderful presents Lewis and Samuel received over Christmas from Post Pal friends. We have also received some lovely cards and emails too.
As you may know, Lewis was in hospital (with me!) from 29th December to 15th January and so we are still trying to get into a home routine now that Lewis is on ng tube feeding.
I will get around to sending thank you cards to all those who have sent gifts, cards and kind wishes to both Lewis and Samuel, but until I do, I hope everybody will know how much you have made Samuel and Lewis smile these last few weeks.
Update 3rd January 2007
We have made it into 2007! Lew is still in hospital, on IV fluids as he vomited up his feeding tube! We’ve got to see some specialists tomorrow about feeding and will be here for a few more days at least.
Update 21st December 2006
I wanted to say thank you again for all the wonderful Christmas cards Lewis has received, one of our walls is covered in cards and he has loved receiving them. Samuel enjoyed receiving some too.
Lewis had his 3rd MRI yesterday at Sheffield and he didn’t come round from the anaesthetic very well. As a result, we had to stay in last night. Lew has now been allowed home (hooray!) with antibiotics for a chest infection and antibiotic eye drops for an eye infection! He was fine yesterday morning when we went in for his MRI lol!
He is now losing his right hand as well as his left hand which is very worrying. He is also having real problems sleeping as his seizures/twitches are getting much stronger and keep him awake. He is soooo tired love him, he has bags under his eyes, but still he manages to flirt and blow kisses and smile at the ladies!!! He enjoyed making eyes and blowing kisses at two other patients in the ward this morning before we left.
Well we are back home now and we are having a rest before Lew’s giraffe chair arrives at 1pm hooray! We hope it will give him the support he needs so that he can hopefully be a bit more independent (ie. not have to sit on our laps all the time).
Merry Christmas to everybody and so many loving and caring thoughts to all who need them.
Update 9th December 2006
Well Lew hasn’t got battens! Phew! That was such a relief, its amazing how much better I feel hearing that news! I was so convinced he had it; I was shocked when they said no he hasn’t!
The next steps are to test for mitochondrial disease and creatine deficiency as well as awaiting the results of a gene test for dystonia.
We are being referred to Great Ormond Street early next year and Lew will be having a further MRI in January/February.
Alice first started receiving post as her sister, Milly, has been a Pal for a year. Alice has her own health problems though.
Alice started loosing a lot of weight which caused concern. As a type 1 diabetic, her sugar levels were out of control and she started having hypo’s during the night which was very scary for everyone involved. The weight loss continued and she started to feel really ill. Next she developed a bad itch all over and would scratch and scratch until she bled as it wouldn’t go away. She also has enlarged lymph nodes and anxiety which made going to school difficult.
Alice’s family took her to various doctors which dragged on for months, and faced with the prospect of another long wait for a biopsy of the lymph node, they decided to see a consultant privately. He carried out a blood test, chest X ray and a scan before delivering the terrible news that Alice had a form of cancer called Hodgkins Lymphoma. He said that it has spread beyond the initial stages as shadows showed up all over her chest Xray. He sent her home for the night with the instructions to be admitted to Manchester Children’s Hospital the next day (Saturday) for more tests and then to start chemotherapy.
Alice is a lovely girl, if you have ever written to her and Milly then chances are you have received a thank you card. She also writes to other children on Post Pals.
Update January 2015
Milly has now turned 16 and feels it’s time to move on from Post Pals.
A big thank you to everyone who supported her and Alice over the years.
Update 12th January 2013
We are very sad to say Alice passed away today. Alice joined Post Pals many years ago as a sibling while Milly was going through multiple operations. We all remember when she first got ill and joined as a Pal the day she was diagnosed, she fought so hard and for so long. After Alice’s bucket list went viral the whole world found out how special Alice was, right until the end she was working to help others despite what she was going through. We were lucky to know Alice for so long and we also knew how kind she was, always thinking of others long before cancer
Update 13th May 2011
Alice continues to amaze us with the most positive attitude imaginable and a determination to make the best of the situation. She refuses to give in to the cancer and is giving her all in a desperate effort to outsmart the beast within. Her diet is entirely organic – home cooked/grown, with a variety of supplements and a mix of fresh home juiced vegetable and fruit drinks. She is making herself get out and walk every single day with Mabel. We also meditate together in the evenings and I think this plays a valuable part in her positive approach.
We are still seeing the psychic healer in Spain and are due to fly out again the week after next… unfortunately, I didn’t think about booking flights earlier and have now realised that it is actually going to be half term week following… not the best time for finding a budget flight!! We are seriously grateful to our friends, Jayne and Dean, for letting us use their apartment out there. Alice has now had EIGHT FULL MONTHS without any intervention or treatment of any sort… for an aggressive, lymphatic cancer. While the healer may not offer the cure we so desperately need, I have gone from being a little sceptical to becoming a total believer and I know that Alice is here with us now because of the healing.
In other areas, Mabel has provided so much joy to Alice, it’s unbelievable. She is such a character and if there’s any trouble, you can guarantee that Mabel will be in the middle of it! Alice is entering Mabel in her first dog show this weekend (14th) so God help the judges if they don’t place our baby! Alice continues to enjoy her oil painting and has quite a little business going – I must add that she has never pocketed the money, it is always given to charity, usually childhood cancer related. Other than that, Alice is also making cards to give to charities to sell – we give them to places such as the hospital shops and charity shops in town, etc.
Milly is continuing to do well and absolutely loves her ‘new’ school. This is such a relief as just a year ago, school was such an issue to her and her self esteem was so low. It’s so nice to see her flourishing and it’s one less thing for us to worry about. A few years ago, when Milly won her Child of Courage award at Westminster Abbey, she was granted a wish and asked to be a journalist for a day. It’s taken longer than planned but, just a couple of weeks ago, she was invited down to Bliss Magazine in London where she worked on a few articles and generally had a whale of a time. Thanks so much to Charlotte at the magazine – Milly will be back for her work experience! Milly’s ‘How to get the look’ piece can be see online – http://www.mybliss.co.uk/web/guest/beauty/detail?id=53856. Milly also recently completed a 23 mile walk to raise money for ‘Over the Wall’, a charity providing camp style breaks for terminally and seriously ill children. Our team, ‘Team Alice’, hope to have raised several thousand pounds. Milly’s next mission is to personally contact and engage all the local schools in supporting a child on Post Pals… watch this space.
Together, the girls have approached a couple of nursing homes in the area and we are shortly to commence visiting once a week with a combination of Bess, Scooby and Mabel (not all three together)! Milly and I were out walking the dogs a while back, when we bumped into an elderly lady, supported by a carer. She was absolutely thrilled we stopped, but very emotional when telling us how much she missed her dog. The idea was launched and we can’t wait to start our visits.
Simon and I both completed the 40 mile version of the above – visit http://www.keswick2barrow.co.uk/about.asp which gives info on the walk and its history. Simon is following in my footsteps and is off to Peru in November, raising money for Great Ormond Street and I’m currently thinking about my next BIG challenge… I’m desperate to do Kilimanjaro, but not sure if I could get enough training in and obviously I can’t up and leave Alice at the moment, despite it being her dream to go to Africa.
Now for the big thank you for everyone who has written to the girls. There has been so many lovely, encouraging cards sent that it would be difficult to be miserable about life. Thank you too for all the thoughtful gifts, they brighten the day even more. Alice received some basset books from Helen in Australia… ‘You can survive – tips for life through basset eyes’… absolutely fab, thank you. But the most entertaining of all gifts has to be the ‘Mabel-cam’… a small digital camera which clamps onto the dogs collar and takes photos automatically on timer. We have laughed so much at the photos telling us of Mabel’s day from her view point… pinching food… eating Nurofen (oops!)… shredding slippers… stripping garden furniture… not too sure that she should be doing it all but it sure makes entertaining viewing. Perhaps we’ve a novel in the making… ‘Mabel and me’!
So thank you to each and every one of you for filling Alice’s life with positive vibes and giggly post… we love it.
Update 1st February 2011
Apologies for such a lengthy gap in our updates. We’ve been mainly at home for the past couple of months, just taking each day as it comes. Alice had a particularly rough patch over Christmas and we did wonder if she’d ride through it but, in typical Alice fashion, she picked up and is making the most of the hours she’s awake! It’s at this point that I confess to not having noted down who to thank for all the lovely gifts and cards that Alice has been getting. She was so excited to receive more Lush deliveries and has become an expert at mixing the different bombs… half of this and a bit of that and half of that. I think that she would make a inventor for Lush! To the school group who were Alice’s Elves, please email your names and contact details via our link – what you did was truly special. We also had other thoughtful gifts for Milly as well. So, despite the lack of individual mentions, please accept our thanks.
Alice is continuing to see the psychic healer out in Spain, on a monthly basis. We’re not sure on how much longer we will be able to afford this for, but, for the minute, she benefits both physically and mentally and we’re grateful for that.
We haven’t heard or seen from anyone related to the hospital since October. This ‘out of area’ thing isn’t so grand when you’re at this stage and I have absolutely no idea what the forward plan is for us. South Cumbria does not have paediatric Mac nurses / Clic nurses / a children’s hospice or anything similar. I’m just thankful that I have been able to take on her entire care and her diabetes management; else I’d still be doing 200 mile round trips.
After months of hassle with her diabetic canula supplies, I’ve managed to win yet another small battle and I now have control over the ordering. Hopefully, I’ll not allow Alice’s supplies to get down to the last cannula, as the hospital did. Somehow, we’ve managed to stumble this far without any major disasters; we make a good team.
We had Milly down at GOSH in January and thankfully, things look okay there. Her almost continuous headaches are been put down to stress, so I’m not really sure how to address that. Really not sure.
So, more a rambling diary of life as opposed to a medical update; but that’s it from us.
Our heartfelt thanks to all who continue to support Alice on her journey.
Update 17th October 2010
First of all, thank you to everyone who continues to support Alice in sending her cards and gifts through Post Pals. She was delighted to receive some ‘Lush’ goodies since the last update and also some craft supplies which have already been put to good use.
I’m very sad to report that despite the extra chemo; last week’s scan shows that there is still some active cancer in her chest. Unfortunately, her function tests show that her body has had enough and we have been told that there is no more curative treatment on offer.
We have been offered surgery to remove as much of the active cancer as possible, but it is major surgery and would likely involve ICU, so we are really on the fence as to what to do. Surgery would only give us time, but if part of that time is spent in severe pain, we feel you have to ask what the true benefits are.
In the meantime, we are seeing a healer with Alice and spending a great deal of time preparing organic, pure foods and raw juices. If nothing else, it will perhaps change my (bad) nibbly habits! Alice is aware of the results, but remains very focused on doing all she can, both mentally and physically, to keep forward moving.
She is so very well in herself that I do sometimes forget about the beast within. She has been busy helping me with the Christmas Card project for Post Pals, and although we are back and forth to either the hospital or the healer, she has managed to make about 8 packs of 5 so far (all sold)!
We were absolutely delighted to be invited to attend the ‘Over the Wall’ Gunpowder Ball in Manchester on 5th November and are hoping that nothing happens to prevent the girls from going. They both have beautiful new dresses (just the fat, anaemic mother not sorted)!!
Having promised Alice a puppy once her treatment was over, we stuck to our word and the very day the hospital delivered the dreadful news, we collected our beautiful new puppy. ‘Mabel’ is an 8 week old Labrador puppy – as chunky and appealing as they come! She already follows Alice everywhere and Mabel has somehow managed to escape the crate at night and make it to the bedroom… mmm, not too sure what Cesar would make of that!!
So, we move forward into the winter months unsure of the road ahead. But we are still smiling as a day spent in misery would be a day wasted… having been on this path for so long, we know that there are many that would give anything to have this special time together.
Update 8th August 2010
I have no idea where the last three months have gone and I do apologise for the lengthy delay in updating Alice’s page. Alice continued with the intensive chemo and had a PET scan on 2nd June to assess the response. We were relieved to see a reduction in masses and it was decided to continue with a further two cycles, the aim being to achieve complete remission. It was following this course that we heard the news that a bone marrow donor match had been found for Alice, which while fantastic news, made us aware of how crucial it was that this chemo works if she is to have a chance.
Last week, after a further PET scan on 2nd, we continued south for a break in Torquay with Luke of the THHN. We’re glad that we were away, as the results show improvement but still not the elusive clear we are so desperately searching for. After debate, it has been decided to try two more cycles and see where we are after that. The cancer, it would seem, is made of pretty stern stuff. But Alice is tough too, and she is determined to fight with all she has.
So, she is going back into Alder Hey tomorrow to commence with a fifth cycle and she’ll be accompanied by some lovely ‘Lush’ bath bombs and some nice smellies from Torquay. She loves her Lush products and stocks permitting, has a morning and evening soak! It’s her little bit of ‘me’ time and the smell lifts her so much (and the nurses who love the lingering fragrance). The poor teenage boys on the ward!!
Which leads me nicely into ‘thank yous’… she had some lovely little boxes of Lush arrive over the past weeks and I can assure you, her face lights up so much that you’d think they were solid gold. She was also made up to receive a lovely card, letter and class photo from a secondary school – oops, I lost the address but thank you so much. I know her latest ‘lift’ is in the form of a DS quiz type game, which is going back into hospital with us – quite a hit. I’m not going to list all I can remember, as no doubt I’ll forget some, but just ‘thank you’ for everything sent to everyone. Alice does try to reply to as many of you as possible, but sometimes, she just isn’t up to it. Please understand and don’t think that it isn’t because she doesn’t want to. And to ‘Fiona’ (if you’re reading), Alice has lost your address and so hasn’t been able to write to you recently. Please write again (or email) with your address!I’ll try to keep you up to date a little more often in future. Sorry!
Update 29th April 2010
We were home last weekend following surgery on Thursday to remove the new areas of growth; so far Alice hasn’t had any feeling come back on one side of her chest. She started the intensive chemo yesterday at Alder Hey, although it’s best for post to go to our forwarding address.
The recent coverage on the TV program saw a rise in post through our door. Alice received a letter from a lad who himself has gone through Hodgkin’s, which really touched her and he sent a voucher for a DS game. There have been a few boxes of ‘Lush’ products and some fantastic craft things arrived which is a huge hit. And yet more doggy post, although our scrapbook is on hold for the minute. Thank you to everyone who sent something, it really did help distract her and put a smile on her face.
Update 17th March 2010
After spending the earlier part of February in hospital with shingles (which I had no idea could be so painful), we were glad to have a little time at home before our Consultant decided enough was enough, we had waited long enough (for action from London) and they would start with a new chemo regime in Liverpool. This started on 23rd February, but what should be a series of day case infusions, ended up been just over 2 weeks in hospital. We’re not quite too sure whether it was solely the chemo causing problems; it could be that she was already coming down with something else, but it really knocked her. Having not eaten for over 3 weeks, she’s lost 12kg of weight and we were left with no choice but to have an NG tube for feeds (which Alice is not impressed about). So, we are just home at the weekend and due back again tomorrow!
Alice was very down while back in hospital and it was reassuring to see a bit of the old Alice appear once we’d got home. She’s still very tired and using her chair constantly to go anywhere, but definitely happier in herself. Monday was a nice day as Julie Bennett kindly treated us to cinema tickets to watch ‘Hachi’ – a new film about a dog. If you get the chance then go – it’s lovely and unbelievably, it’s based on a true story.
Alice has been well supported with post this last month so HUGE thank you to all of you for keeping her going – it really does provide a distraction. Our ‘Dog Scrapbook’ is coming along – we ended up buying an expandable album so that we can scrap properly and Alice can take it with her to hospital to look at all her canine friends! Doggie contributors include – Percy the Poodle, Bess, Fizzy, Toots, Harriet, Holly, Buckley, Oscar, Lily, Poppy, Paddy, Jess, Tara and her puppies (awh), Charlie (RIP), Fergie, Toby, Zach, Suzy, Diesel, Dave, George, Bob, Poppy, Ally, Kimmy (RIP), Jenny, Harry, Jessie, Ruby (and baby Jack!), Max (who is a fluff ball), Dizzi the Dalmatian puppy, Alfie and pals – Bella, Drogba and Jimmy, Skye, Elvis, Kita, Oscar, Rocco, Dylan and finally, but not least, Merlin. WOW – so you’ll see that we have quite a few woofas to be getting artistic with – we’ll be posting photos of the album on here as it progresses.
Alice was so made up to receive a dog card from her idol, Cesar Millan, and that is being framed (I’m not allowed to add it to the scrapbook) – thanks Jan for organising that. He wrote ‘Believe with Love and Calm, Assertive Energy’ – ‘Blessings’. She couldn’t believe it and had to keep reading it again and again.
Now onto ‘none doggie post’! Thank you to Sharon, Kate D, Miriam for Alice’s book (fab choice), Sarah G for the bunny (sorry got it wrong last month), Jenny, Sacha, Viks, Alison for Alice’s book (another classic), Max the dog, Julie Bennett for various things – letters, treats and dog photos, Emily B, Emily, Helen B, Libby for the fabulous box of Lush things (one thing guaranteed to put a smile on her face is Lush), Arlene for photos and stickers, Deidre for her handmade card, an unnamed card from Finland, Anne-Louise for the puppy book (awh), Jane, Garry & Julie, Sarah, Suzannah, Claire, Kate D for the 100 ways to train a human dog book (so funny), Emma Stone for the knitted Angel, Angels of Hope, Wendela, Clare and Sophia. Phew – so you can see that Alice has been well loved this month. Thank you! Now for the grovelling apologies – Alice received a beautiful ‘Alice in Wonderland’ bracelet which wasn’t added to the usual list as we were sending a thank you and somehow, we have lost the address and so have no idea of who to thank. Please drop us an email and we can put that right! Another thank you is still due to the kind lady who sent a huge box of craft things for both the girls at Christmas time – again, please let us know who you are. Finally, anything sent to both of the girls may well have been opened by Milly at home and unfortunately, Dad does not always think to write down names and Milly is usually too excited – so, I arrive back none the wiser. Apologies if you are one of them!
So, the vague plan is to complete another 1 or 2 cycles of chemo and then PET scan to see if the cancer is sensitive to it. We can give more chemo if necessary, although the less required the better. Then, we have to pray that a donor is on the horizon and proceed with transplant once more, although this time it’s more risky. My job is to keep Alice as strong as possible for the battle ahead, so thanks for walking with us and supporting her.
Update February 2010
Alice had a further PET scan on 1st February, which we were praying would show the previous PET results to have been false. Sadly, that was not to be and we were dismayed to find further spread. Having tried all known protocols, we are somewhat out of options and the team at Alder Hey have been talking with the team at UCL to try and come up with something. We are hopeful that we will be allowed to try something experimental, but that will still have to be followed up with a BMT and currently, there is no donor. I would ask anyone eligible to register with either www.nhs.co.uk or www.anthonynolan.org.uk – the upper age on the NHS is slightly higher, up to 44 inclusive. Please consider it – YOU could be the one to save our girl. Please tell anyone you can.
Alice is still my smiley girl, but she has to deal with a lot at the moment. Her body is constantly aching, she isn’t sleeping and she is quite low, which just isn’t her. She has had much comfort from the fabulous microwave bunny which arrived (and pinched Milly’s at times, sorry – don’t seem to have written name down – was it Helen?). She managed to develop shingles at the beginning of the month and that required a week back in hospital as the pain was so great. Thankfully, it seems to be under control now. She has been enjoying a charitable project which has been run in the hospital by ‘Twin Vision’ and on Friday last week, we were invited to St George’s Hall in Liverpool for the awards ceremony. The animations were screened and the children all collected their very own Oscar – very proud mum!
At the end of January, we were gobsmacked when a large Elf box arrived for Alice – from her Elf Debbie. Not really too sure where it had been as the post mark was mid-December, but it provided a huge boost and we actually decided that Christmas in January was rather nice.On our thank you list – Helen, Hanna, Clare, Lydia, Kate D, Post Pals, Viks, Claire, Maria & Michael, Marjolyn, Shelagh, Helen, Sophie B, Munchang Middle School, Shauna, Hannah, Jemma, Marcus, Tez, Heather, Erin, Percy, Jayne, Sarah, Emily, Sarah & Abi (Liberty Rose) and finally a lovely box of Valentines goodies arrived, but with no name – posted from LE17, so thank you whoever you are. No doubt I’ll have missed someone – please don’t be offended, it’s just my mushy brain and not intentional.If anyone could find any information on how we could get an autograph / card from Cesar Millan, please let me know. He is her idol and any regulars will know that she lives, breathes and talks dogs. I know that would lift her (as would Colin Firth coming to take me out for the evening)!!!
And finally, thank you to Anne who makes the most wonderful cards and sent one for ME! I was very touched that you did that. Thank you!
I haven’t a clue where we go from here but I will update as and when I am able. Please keep your messages light and child appropriate.
Update 10th January 2010
We got the results back from Alice’s scan on 22nd December and unfortunately the PET scan wasn’t clear and showed a new area of activity. So, Christmas wasn’t the easiest time for us and despite been a few days late, we were glad that we made the effort to go up to Malcolm Sargent House in Scotland, for Christmas itself. Alice was back in hospital for surgery on the 30th, which involved cutting a rib out to perform a biopsy on her thymus. Alice understands that the disease is still there and that we need to keep the fight going a little longer. She has such an amazing attitude to everything and I know that I wouldn’t be half as brave as she.
I apologise for complete lack of acknowledgements on here and hope that you will understand it’s a very emotional time for us. Prior to Christmas, the girls received a huge box full of really fabulous craft things which was just so exciting for them. I have taken photos and the girls have put your address to one side, so you will receive a thank you at some point. Alice was delighted with her Elf boxes and I do know that one came from Fearne and the other from Jojo – thank you so much for making it special for her. Alice’s regulars Hanna, Emma, Anne and Percy are to be thanked – we love hearing about Percy’s antics. Alice has also been receiving gifts and cards from many others – I don’t wish to list the ones I can recall for fear of offending those I can’t, but please know that your thoughtfulness brings a smile to her day when I am (more often than not) failing.
It may be some weeks before we have a plan of action and I will update when we know anything, but in the meantime, heartfelt thanks to you all.
Update 13th December 2009
Alice is doing well but is very, very tired and not really managing to do full days of anything. We try to get out for a walk every day but she seems to get slower as the weeks go by, not livelier. She’s even resorted back to the wheelchair at times, which is panicking me as she seemed to be doing so well. Not too sure if that is normal or not, but it could be over analysing things and perhaps we’re just starting to try and do too much with her, too early. She had her PET scan two weeks ago; yes… two whole weeks ago and we still haven’t got the results back. I wish that the people doing these things could live these weeks as us. I know that things would soon change if they had to wait. We rang and were told they haven’t got the results. Whether that means that they genuinely haven’t got the results or that they have the results, but are figuring out where to go from here, is anyone’s guess.
We go to London for a few days next week and will be going to see Billy Elliott on Tuesday evening, attending the GOSH party on Wednesday and meeting up with some good friends. The purpose of the visit is really for Milly to attend various appointments at GOSH but as it’s Christmas and also Alice’s birthday coming up, we thought it would be a nice treat for her. Having booked everything, we’re just not that sure that she is going to be up to it all and taking steriliser bags, clippi-bottles, a travel kettle and wheelchair with me is kind of taking the edge of it!! It will be fun to experience British Rail on a busy Friday when we travel back.
She is looking forward to Christmas and on her list is a puppy, hair straighteners and some crafting supplies. Not the easiest of lists to work with as a) the puppy is out due to transplant restrictions, b) she hasn’t actually got any hair and c) the thing we know that she wants costs the earth! Anyway, I will have to get my finger out and have a proper look and see what we can find. We have spent the past few weeks making 20 red fleece stockings and have persuaded our friends and family to sponsor one. They are filling them and each one will be delivered to a child affected by cancer, who is staying at the house over Christmas. We thought that it was a lovely way to show that our friends and us care about these other children and Alice feels very good about having done them.I promised that I wouldn’t do it last month and yet I have… again. The list was started with good intentions, lost and never re-started, so it’s down to my brain, which isn’t exactly efficient at the moment. Still… I know that Alice has had lots of good wishes from various Effingham villagers and loves all the different postcards, June, Marjolyn, Tez, Kate D, Post Pals themselves – love the bathbomb and haven’t opened the little Christmas package, Emma, Emily, Percy the gorgeous Poodle and last, but not least Hanna. We loved the PJ pictures – cool. Alice has also had some Christmas cards starting to arrive and again, I haven’t got a list for those, but THANK YOU. Alice and Milly both received a fabulous surprise from the Thomas Ball Children’s Charity which I can’t mention as, once again, they’re not getting them until Christmas Day. However, I know that they will be absolutely thrilled when they see the boxes and their contents!To all of those that I’ve no doubt missed off, huge and grovelling apologies… I feel a New Year’s resolution coming on! THANK YOU.
Update 27th October 2009
We have just (about an hour ago) been given the news that we are free to go home tomorrow (Tuesday) and so we are so excited, but nervous as well.Alice is doing really well but things have been tough for her in the last week; one of the lads who was in transplant with her sadly passed away and another has been told he is now terminal. Bit of a reality check, I think. ‘Stereo Decade’ came into the ward on Friday to play to the kids, a real lift for them – they were amazing and it is so lovely to see youngsters giving their time so willingly.
I do have a list of people to thank, particularly Percy the Poodle (with his humans Sarah, Emily and Jane) who have been keeping Alice’s spirits lifted throughout transplant. Hanna and Tez have also been very supportive as have many others and I promise to update with a proper list… soon!
We now have a period of clinic appointments until her PET scan in December to see if everything looks to be working as it should. As we haven’t had a holiday for a while and her birthday is 15th December, I’m trying to find a short break package to take her and Milly away for a few nights that week, perhaps do a show for her birthday night and just enjoy London. That should (theoretically) fit in regardless of the results. Milly has her pre-surgery appointments in GOSH on 17th, so that would tie in nicely with that. However, mid December is not the easiest time to find nice (but affordable) accommodation in London and, unfortunately, we still have transplant restrictions (diet, etc).
So, we’ll be back home from tomorrow, which will be so strange. I’m now trying to figure out how to pack 4 months worth of rubbish into one car! It’s frightening how quickly time has gone by, can’t believe we’re not far from Christmas.
The Hell’s Kitchen DS game was well received and I’ve even had a go on it! She has spent all her (waking) hours on her laptop, her iPod, her DS or her DVD player. It makes you wonder what people used to do prior to these modern inventions.
Milly is currently out in Florida on ‘Dreamflight’ with an amazing bunch of people. The timing was excellent as she has had quite a year with all of Alice’s treatment, but also has surgery coming up herself, so it just fit nicely in the middle. She gets back tomorrow, so it will be back to full-on-busy-mode at home… I can’t wait to get my family back together.
Update 23rd September 2009
Alice is doing as well as expected. She’s lost a lot of weight and is on TPN now, antibiotics for an infection, morphine on pump (which is blissful for us as well as her) and just generally sleeping and groaning a lot. She is fine though considering what others are going through. G-CSF starts today (or perhaps not) and then hopefully, within the week, the cells will start to kick into action.
Update 13th September 2009
Things are moving along with Alice and she is into high dose at the moment, with transplant due on Tuesday. After a couple of rough days, her sickness is now under control and although extremely inpatient with us, she is at least not feeling too bad!
Thanks go to the following who have sent post over either August or September (or both in some cases)! I do apologise if you’re missing… I did try my very best. To Hanna, Nicky W, Linda B, Clare, Katherine, Tez, Anna (Ohio), Michelle, Percy the Poodle, Viks Post Pals (the poodle is on the bed – girlfriend for Percy we reckon), Erin & Dave (Utah), Tracy, Edit (Toledo), Vicki, Silvia (AB), Charlee – Jack – Harry, Autumn (UT), Kylie (UT) Nicola (UT), Karen, Cathe, June Junko, Liz (Pitman), Anne Ray (wow), Kellie, Caroline, Sarah, Jenny, Jane, Karen, Kate Dee, Melinda, Sarah, Owen, Nicola, Grace (Mmm), Flo, Laura (returning to her reception kids), Emma, Debbie, Lynn, and finally, but not least, John from Sussex – how nice to receive a card from a gentleman! Alice has been thoroughly spoiled with post which has done an amazing job of keeping her spirits up and her time occupied. She has enjoyed making friendship bracelets, loved the Lush bath we poured for her and really enjoyed the DVD sent just this week.
I have made up a large clip frame with many of the cards she has received this past month and as it is sealed, we are having it cleaned to come into the isolation room. So thank you – it’s something nice to look at!
Update 23rd August 2009
We remain in Liverpool with Alice and things are moving slowly, but I suppose it is expected.
Her counts haven’t been recovering lately and as such, she has been in and out of AH with various infections or viruses. Her trip to Over the Wall was cut short after two days and they phoned for me to go and collect her. She just wasn’t up for it and it was too much for her, but she did enjoy the time she was there, be it limited.
Last week, Alice had functioning tests done on the Monday/Tuesday and we are delighted that her heart and lungs both appear to be okay to proceed with high dose. We are still awaiting kidney and liver function. On Friday she had a PET scan at Preston and we should get the results by Wednesday. She is having surgery on either Wednesday or Thursday to put in a double hickman in readiness for the high dose and we are now set to proceed on 7th September.
Alice was recently offered a place on ‘Dreamflight’ to Florida, but we have had to decline as regardless of which way things go, she won’t be able to go.
Update July 2009
Once again, apologies for the lengthy delay in updating Alice’s page. It never ceases to amaze me that I manage to get to midday and still be in my dressing gown; nothing to note and yet so much achieved!
Through June, Alice had the first two of four cycles of conditioning chemo and we also managed to successfully collect adequate stem cells, disease free. We’ve been back down at Alder Hey since the beginning of the month and just today moved into the Rhys Daniel’s house for a few weeks. Alice has been having chemo 24/7 followed by G-CSF for 10 days (currently ongoing) and hopefully back to chemo for 2 weeks from next week prior to high dose chemo starting on 25th August. The stem cell transplant will follow on from high dose. So, regardless of whether Alice is in or out of hospital, this is now our base for the duration. It is just so good to have this place and such a relief not to be living out of a bag and constantly packing and unpacking. Alice was reaching her limit in hospital as it is just so invasive and she is a very private girl. She is noticeably happier to be ‘out’, if only across the road!
We are keeping our fingers crossed that Alice will now be able to go on the ‘Over the Wall’ camp in the Midlands. She has been for the last two years but we thought she wouldn’t be able to do this year. She was supposed to be in transplant now but, with the positive PET, we had to add another course of chemo, thus giving the potential to fit a few days out. Alice’s consultant is keen to get her there and they seem willing to move things around if need be. I’m a little on edge about her going away, but if it’s what Alice wants, I won’t spoil things. I won’t be far away though!
Alice has received lots of post – cards, letters, postcards and some lovely gifts. The teddy on her hospital bed was sent from Sue and is absolutely gorgeous and she’s had some lovely craft things, some DVDs, a story CD and some gorgeous fluffy slipper socks! These have been keeping her spirits up and providing a constant source of distraction. I am guilty once again of not being able to recall all the names, but please don’t hold that against Alice. Thank you to each and everyone of you … I will try better, but better not promise because I’m useless!
Update 1st June 2009
Alice has been having chemo and is having the stem cell harvest early this week. We hope to be allowed home for a couple of weeks from Wednesday.
Update 11th May 2009
Following last weeks tests we have a new plan.
We go into hospital on Tuesday. She will have a bone marrow aspiration on Wednesday, followed by functioning tests for all the vital organs, and then start a new chemo on Thursday or Friday. When that starts to have effect, she’ll have cyclophosphomide to stimulate new stem cells and they will harvest them then. Once these are safely out and the Hodgkins has reduced enough, they will start the high dose chemo and she will then be in isolation and have a stem cell transplant (information on what can and can’t be sent post wise will be posted on her page when needed).
We are expecting to stay in the hospital right through, but it all depends on how the initial chemo goes – she may well need a break from it and if possible, we will come home for that.
We will post the hospital address when we know which ward we will be on, but Milly and their Dad will be able to bring up any post at first.
As she will be feeling very wiped out (she is already shattered) we have updated her list of interests.
Update 28th April 2009
Sorry that we haven’t updated for ages. Alice’s radiation finished in mid-February, which she tolerated well and with a smile on her face. We then had to wait until the end of March (6 weeks) for the next PET scan. We were lucky to spend a week at Malcolm Sargent House over the Easter Holidays, enjoying time together as a family and being pampered by their wonderful staff, although the pending scan results were never far from our minds. We got the results back after an agonising 2 week wait which although are now clear in the chest, show new disease in the neck. This is obviously another blow to us. Alice is being admitted back into Alder Hey this week to have surgery and we’ll know where we’re heading a week or so after that.
Alice has been approached and asked to say a few words and then start the Race for Life in the nearby town of Barrow. She was thrilled to be asked and we’re just hoping that she will be well enough to do it. Need to sort out tutus, fairy wings and lots and lots of PINK!
Thanks to everyone who continues to send Alice and Milly post. I’m praying that being a complete wreck excuses me from keeping lists (the lists that I never remember to do anyway)! Something arrived this week that brought the biggest smile ever… a fabulous huge hand stitched quilt from Love Quilts UK. Each square has a different dog stitched onto it and it is really quite amazing and had us all emotional. Its arrival gave a much needed distraction and it will have pride of place on her hospital bed this week! Milly also received one. If you are a cross stitching fan (I am hopeless) then have a look on their website and get stitching – http://www.lovequiltsuk.com/. We will update as soon as we know more. Thank you.
Update 31st January 2009
Alice has had quite a difficult month, but as usual, she has faced it with cheerful resilience.Prior to commencing radiation, she had several appointments at Clatterbridge to make a mask in readiness for her treatment, along with various x-rays and scans. After her previous experience at Manchester, she was particularly anxious about it and it was a relief to have such wonderfully caring staff that went to great lengths to put her at ease. She started radiation a few weeks ago and after the initial daily commutes, we were lucky to be offered accommodation through the Rhys Daniel’s Trust. We are now approaching our final week down here and looking forward to getting home. We are then going to have to return to the much hated phase of ‘watch and wait’ until our next PET scan. We just pray that the treatment has worked this time.
We have had some post down here in Liverpool from Viks, Kate, Jane and Emily. Thank you so much for everything and the chocolate candle is fab! Before we left, Alice received a fabulous audio CD from Stephanie and that’s all I can definitely remember – I am told that there is much more waiting at home in Cumbria, so no doubt Alice will be even more excited than I to arrive back next week. We do have another list at home and we will thank people properly when I arrive back – this is more to keep people up to date with Alice’s treatment.
With grateful thanks to all and wishing you all a ‘Happy Valentines Day’!
Update 5th January 2009
Alice has had a fairly uneventful month health wise. She has completed her second course of chemo and will be starting radiation treatment this week at Clatterbridge (where Alder Hey sends their kids to). She is just feeling tired really, no other side effects at the moment, although I’m sure the RT will bring its own problems! We are currently faced with having to do the 4 hour round drive every day, as there is no accommodation available at present. As with many things, it comes down to cost, and it is still much cheaper to drive (at around £35 daily in petrol) than to find a B&B. It is a joke that prisoners are afforded better conditions than kids enduring these truly horrific treatments.
Alice was invited to go to Lapland with ‘When you wish upon a Star’, Manchester. It was so good to just be a ‘normal family’ again. She had an amazingly magical day and we were all very sad to get back onto the plane. Alice also turned 13 in December and we managed a quiet meal with a few close friends. She received lots of lovely cards and gifts, particularly from Post Pals, so thank you to everyone.
Christmas was a particularly exciting time for both the girls, although it took Alice 3 days to open everything as she was so tired! So many people had put a great deal of time and effort into sending things and it was so lovely to see the smiles on Alice’s face (see the photos we’ve uploaded to Post Pals). Alice was extremely lucky to receive two ELF boxes – one from Kate D and another from ‘?’ (please let us know who you are)… even I was curious about the contents! They were packed to the brim with little (and not so little) packages. THANK YOU WONDERFUL ELVES! Hanna sent a wonderful array of well received gifts which Alice was delighted with and she also received a package of gifts from Marjolijn, including lots of crafty bits and some FAB name stickers which are already being put to use. I think that this last package was intended for Alice’s birthday, but I’d put it under the tree! She also received some very thoughtful gifts, emails and cards from Stacey, Julie Barrett, Louise Woodcock, Linda, Post Pals, Becky B, Despina, Maria & Michael, Erin & Kyle, Charlotte, Marjolijn, Jenn, Viks, Susan, Helen, Sarah, June Junko, Amy Parr, Emily Edmondson, Kristina and last, but not least, Emily & Jane. I pray that I have everyone on my list, but if you are ‘MIA’, then it is most likely because the children managed to receive and escape with your gift before I could list it!
There is no package or card more special than the other – each unique delivery brings its own joy and if they were all the same, the magic would be lost. So, big or small post, thank you to each and every one of you and ‘HAPPY NEW YEAR’.
Update 26th November 2008
Sorry for the delay in updating Alice’s page. We travelled to London in late September and were disappointed to learn that UCH didn’t want us as Alice isn’t yet 13. Apparently 12 and 3/4 is a very awkward age! The consultant we spoke to was also of the opinion that it was too far to be travelling from Cumbria and he didn’t think that it would be fair on Alice. It is a great pity therefore, that he didn’t listen to our argument. So far, we have left for Alder Hey (where she now is) from London, more times than from our home in Cumbria. One can only assume that these people have their mind closed to the minority with exceptional circumstances. After our encounter with UCH, we were desperate to move ANYWHERE. Manchester and UCH had other ideas and seemed almost desperate to continue Alice’s care at Manchester, which we were not going to allow. We dug our heels in and eventually Alder Hey were asked to accept Alice.
So, Alice is now into her second month of chemotherapy at Alder Hey hospital, bringing it close to a year of treatment for something that should have been solved in 4 – 6 months! Alder Hey are fantastic in every single way – the nurses, the assistants, the shop, the canteen and especially our new consultant, Heather. She has gone through everything with us in detail which was so wonderful. We are unaccustomed to such communication and extremely glad we made the move. It has that wonderful feel that we have come to know and love at GOSH. We have now been told that Alice should have been a 3B and not a 2B at diagnosis and therefore the prognosis is a little worse, but we are still very hopeful. She will now have to have radiotherapy as a matter of course, to the full field, including heart and lungs. This was very upsetting for us as had they listened to me a year ago the treatment would have been very different. So, another of ‘those months’ and we’re not too sure if we’re coming or going. Alice’s hair, which had reached the grand length of 2cm, is now falling out again and she is pretty distressed about that. She is feeling very tired and weepy, but still my gorgeous girl inside. Alice hasn’t been to school for quite a long time and unfortunately her friends now seem to be forgetting her. Two of her closest friends have had birthdays recently and not included her which left her feeling very upset. It’s very hard to come up with reasons for things like this, other than they are simply thoughtless and have no idea just how difficult life is for her right now.
Alice has had so much post over the last 2 months and just for a change, I’ve kind of misplaced, okay – lost, the list. Kate D did send a very special present for both of the girls and they were over the moon. Alice is using it constantly at the moment – in bed, in hospital, in the car… thank you! Hanna also continues to send regular post to Alice and also St Matthew’s Sunday school brought a smile to her face with some lovely letters. I sincerely hope that you can accept my apologies for not been listed personally but every letter and every single item is so eagerly opened and read or played with. The post has kind of become her ‘friend’ and is a wonderful distraction, particularly on the down days. Alice has taken up residence on the sofa in the hallway just to be there when the post arrives. She is busy making cards herself and has already posted to some of you. As for me, I’ve just completed a 10 day challenge in Peru, for Great Ormond Street Hospital. With various events and my sponsorship, I think that I’ve raised around £11,000 for them, which I’m very pleased with. Having agreed to this over a year ago, it was extremely difficult to know whether to go or not, but the 10 days fitted with Alice’s ‘off treatment’ days and I had so much money resting on it. I found it quite difficult to detach myself from what was going on at home and spent a lot of time holding back the tears. It was the hardest thing I’ve ever done, but I’m so glad that I did… it kind of proves that you can make yourself do anything if you really want to.This will probably be our last update before Christmas so – ‘HAVE YOURSELF A MERRY LITTLE CHRISTMAS’ x
Update September 2008
We had our scan in early September and unfortunately, the results show disease progression. We have been back in Manchester but this time at Christies where we have been fortunate in having the most wonderful consultant who actually talks to us. What a difference a bit of communication makes. We were advised to go with radiotherapy, but not being one to settle for the first answer, we spoke to both the US and to GOSH / UCH, both of which would do different things. They would go with high dose chemo and stem cell as they don’t think that the radiotherapy is the answer for Primary Persistent Disease. We have therefore made the difficult decision to pull Alice out of treatment in Manchester and get her down to London ASAP. Manchester still felt the radiotherapy was the best option. It wasn’t easy, both have their advantages, but we had to go with the one we thought best.So not the best of months, but at least we know what we’re facing and have a plan, if a little vague. Unsure of what will happen to Milly now, she may have to go back to school as I don’t know how things will pan out with this new phrase.
Thanks to all who have written to the girls in the last 6 weeks. Hanna, you continue to put a smile on Alice’s face – thank you. I simply haven’t got around to listing the others, but please don’t be offended, your cards still mean a lot. Thank you for your continued support of our girls.
Update 18th August 2008
Alice has had a good July/August and is looking really well, at last. She is in Manchester today to see the consultant, but unfortunately we don’t have a good relationship and I just can’t face going. Her Dad has taken her as he if far more detached and businesslike than I am. We are waiting to get another scan to confirm the make up of these residual solid masses. They are likely to be nothing to worry about, but until we know, we feel unable to draw a line under the treatment part. Once we are settled with that, we can move onto the next phrase, which will be wonderful.
Alice went off to ‘Over the Wall’ camp at the end of July and announced it to be her ‘best ever break’ when I collected her. They are just amazing and I always cry when we drive away. I am in awe of all these wonderful people and everything they give for a child they don’t even know. The girls are full of chatter and obviously have the time of their lives. You can go to ‘Over the Wall’ and link to photos of the kids at http://www.otw.org.uk – select the ‘photo’ link. Our paths have crossed with many charities over the years and I know that when the girls are older I’ll be getting involved in some way.
We were planning to spend a week camping after collecting the girls, but unfortunately, Alice felt ill within about 4 hours of arriving back at our tent, and although recovering, Milly then wasn’t well and we ended up packing up and coming home early. Illness under canvas doesn’t mix! We are fortunate in having 5 days booked in Scotland from this coming Saturday at Malcolm Sargent House. We’ve never been and don’t know what to expect – excited and nervous at the same time!
Thanks to – Post Pals, Jenne, Lily, Hayley, Sami (Karen), Dawn, Kate Dee, Hanna for everything, Becky (Surrey), Jennifer Castle and to Sheila and her woofa, Rufus x x x
Update 2nd July 2008
Alice has had a reasonably good month. She finished her initial chemo in June and managed to get back to school for a few mornings, which was nice to see. She is looking a lot better in herself, although this is deceptive as she still tires very easily. She completed the Race for Life on 9th June and we raised around £200 between us. Alice’s scan in late June wasn’t completely clear and we now need to wait for 6 weeks (early August) to rescan and see what’s going on.
Alice has to stay with my mother at the moment as I’m in London with Milly, so I’m proud of her managing to sort out all her meds and her diabetic pump without me to guide her. Thank you to all who continue to write to Alice, especially her regular, Hanna (hope I’ve spelt that right). I will add thank you’s at a later date as I have the list at home, not here in GOSH. I can remember the jewellery box from Kate D… thank you.
Alice is going to Over the Wall camp on 27th July, which I think (hope) will do her some good. She is very hesitant about going at the moment, but I’m hoping that she’ll gain from it. She lacks confidence and I think once she’s there, she’ll be fine.
Update 16th May 2008
Another month has gone by! Alice had her PET scan and the results were promising, showing everything shrinking and becoming less active. The plan is to continue her chemo for the moment and then re-scan. Alice is now on a 2 weeks worth of oral chemo, along with the steroids and anti-sicks. We are back at Manchester on Monday.
Alice has now managed to miss the majority of the whole school year. Her school has been very good with us all and her friends keep in regular contact. Unfortunately, the weeks she feels well tend to be the weeks on treatment and the weeks she isn’t on treatment, she tends to be quite weak. We are hoping to get her into school, at least part-time, after the spring break in June.
Alice and Milly are both being bridesmaids at the end of this month. They have beautiful ivory sequined bodices and tulle skirts. Alice is going to collect her wig next week, so we’re hopeful that she will feel like a princess and have a very memorable day.
I competed in the annual ‘Keswick to Barrow Walk’ on Saturday 10th and managed to complete the full 40 mile walk, raising around £1,000 for Clic Sargent Childhood Cancer. I’m hoping to raise around £5,000 doing the Inca Trek for GOSH in November and I’ve already raised thousands for ‘Jeans for Genes’, so next on my ‘hit list’ will be fund raising for ‘Over the Wall’ (OTW) and for ‘Post Pals’… watch this space!
Update 1st April 2008
I can’t believe that another month has gone by! We have had a mixed month with Alice. Some very good periods and some not so good. Her diabetes is giving us major problems and we have been on I.V. insulin as we just couldn’t get her levels under control. Steroids are causing some major moods – or is it just pre-teens?! She is tolerating chemo fairly well, sickness now under control, but is suffering with bad leg and back aches. Last Wednesday she was back in with a line infection but thankfully no temperature with it, we’ve been lucky to see antibiotics working already. Due to the relationship with our local hospital, we have to travel to Manchester for all diabetes and oncology care in-between our stays. This is proving to be very tiring as the 180 mile round trip takes anywhere up to a few hours each way due to the horrendous traffic. It is the ‘norm’ for us to spend all day at the hospital and leave after tea – I could make the drive with my eyes shut! We are having to wake every few hours through the night to test her levels as she is so all over the spot that her BMs are 20-odd one minute and 2.3 the next!
Alice is doing the ‘Race for Life’ with a group of friends (plus us parents) soon.Next week, our favourite GOSH nurse is arriving for a week to help us out – no mentions of name, but we love her to bits and will be very pleased to see her!
Huge apologies, but I’ve been absolutely hopeless with keeping track of who sent what and when. Rest assured that Alice is always thrilled to receive anything and I will reprimand myself and try better next month with ‘list keeping’. I did manage to ‘check in’ letters from Claudia & Jules, cards from Helen & Jenn, a lovely Easter bunny from Martin, Jackie & Jamie, a ‘tangle toy’ from ‘The Training Shop’ (Mum likes that) and a lovely package from the Burnetts in Jacksonville, FL, who sent some beautiful beaded book marks with notes from Brianna, Millie, Emma, Ruth, Catherine and Jazmin – thank you girls! Alice also enjoys receiving lots of e-cards, from Linda and particularly from Marie in Scotland.
Well, on with another month. We will be having a PET scan and CT on the 14th so will know more how she is responding to treatment then. Fingers crossed we can stick with the chemo and won’t need the radiotherapy, but we’ll cross that bridge when we come to it.
Update 27th February 2008
Alice is feeling pretty low at the moment, which is probably due to a combination of shock and drugs! The Vincristine she is on is making her sick and we have upped the anti-sickness drugs to try and combat that. She is having her hair cut short this week – losing her hair is the one thing that is really bothering her. She is clingier than ever and follows me everywhere, assuming she is awake! The post arriving really does provide a welcome distraction and we’re also grateful for the space our friends have given us now we are home for a bit.
SPECIAL THANKS to Julie, Joe & Sam for all the craft stuff, Joyce at E J Crafts in Ulverston for the card making stuff, our angel in Spain – Claudia for all her lovely gifts, especially the glow teddy, Colette who has just found Post Pals, Leila for sending her first signed novel to Alice, Anna Mae for the lovely necklace and finally, Kate Dee who will always have a place in our hearts. Kate sent Milly a Bratz balloon when she was in hospital and last week a huge box arrived on the ward with a fabulous unicorn balloon for Alice – it brought a lump to my throat – thank you Kate. Alice also received some lovely cards from Julie, Annie, Debbie & Louise, Sarah and Becky Butler. Singing e-cards from Marie brought smiles and finally, emails from Sera & Liberty, Marie, Erin F’s family and Hannah-Lou. I hope that I haven’t forgotten anyone as the original list I did in hospital went AWOL!
We are fortunate to have lots of family and friends around us, which makes everything so much more bearable. We feel stronger for what we have already experienced with Milly, and the support from the big charities such as ‘Over the Wall’, ‘Jeans for Genes’ and ‘Great Ormond Street Hospital’ (fund-raising dept) has been deeply appreciated. We have built special relationships with these charities over the years and feel we know them well, as they do us. Our commitment to continue raising awareness and / or money for them is stronger than ever, and I still intend to pull on my boots to raise money for GOSH in Peru later this year. The last but not least mention of course goes to Post Pals themselves, particularly Viks. You’re a star – thanks for being on the end of a phone at 3am!!!
Update 24th February 2008
Alice is doing well but seems to spend all day sleeping. She is feeling a bit sick, but not being sick, which is good. Her mouth and throat is now starting to hurt. We are hoping to be home for Tuesday for a few days and then it starts to become a bit ‘in and out’ from what I can gauge. She is being really good and always has a smile for the nurses. We are doing an initial 4 months of chemo cycles and then they reassess and see where we are.
We have had lots and lots of post which has really helped in keeping that smile going. I did start a list which has gone AWOL (but it will be around somewhere) – it is a little like living in a caravan, but with no cupboards. Kate Dee sent a huge unicorn balloon which is floating above her bed and we have had lots of teddies (all lying on the bed with her) plus lots of cards (all stuck on the wall). A little girl called Grace sent both girls a lovely picture and letter and she’d been out to buy some craft things for them to do – she is only 4! Pal Erin F’s family have sent things and I received a lovely letter from Jeff (the grandfather). I will get a proper list done and as always, we will get some thankyou’s done when we get a minute.
Update 21st February 2008
Treatment is going ok, how ever it is causing problems with her diabetes.
Thank you for all the lovely postie being sent.
Update 13th February 2008
Alice had a hickman line put in, but they were unable to get the lump out. Thank you for the Chemoduck now named “Danny”. Chemo starts on Tuesday.
Update 11th February 2008
Alice’s family were told today that the cancer has not spread beyond the neck and chest, so the outlook is good. She is going down to theatre on Wednesday to have a lump removed, bone marrow biopsy and a hickman line put in. She starts chemotherapy on Monday.
Thank you to Barbara for dropping off the quilts while Alice was having a CT scan, she is curled up under it at the moment as it’s really lovely!
Aled was born on the 1st Sept 2003 after 38 weeks of his mum having to control Gestational diabetes. His mum was regularly scanned to check Aled’s progress and after 8 months a date was set for Aleds birth due to his size and because he was in the breach position.
When he was born the only thing that we noticed was that his arm was looking strange. After a couple of hours a Consultant came and explained to us that Aled had VACTERL Association which meant he could have loads of problems. Some of the immediate problems were an Imperforate anus, a large hole in the heart with possible coarctation of the artery from the heart, a missing Radius, 3 fingers on one hand and a free floating thumb on the other hand.
After 18 hours he was transferred from Plymouth to Southampton because of the heart problems. After 48 hours he had an operation to fit a colostomy bag due to his imperforate anus. That same day we found that one of his kidneys was not formed properly and would probably shrivel up and die on its own. He stayed at Southampton for the next 8 weeks while they fattened him up for his heart operation. They repaired his heart in Nov 2003, all went well with the operation but while he was In PICU is heart was failing to recover and slowly we watched as we thought he was slipping away from us. We decided to let our families know that things weren’t too good so we left PICU to make a few phone calls. While we were out of PICU his heart sprang into life and that was the start of a really quick recovery.
Since then Aled has had two operations on his bowel and anus, an operation on his left hand to move his index finger to the thumb position. He also had an operation to release a tethered spinal cord and is now awaiting an operation on his right hand to split the webbed fingers. We have also found out that Aled has Scoliosis and abnormal vertebrae which will also need watching for damage.
No matter what Aled goes through he is still a “proper” boy, into all sorts of trouble. He loves meeting people and enjoys going shopping just to see other people in the shops.
Update 21st September 2012
Since Aled joined Post Pals in 2005 he has really had some great post from you. Post Pals was there throughout a lot of Aled’s surgeries and each of his recoveries, during which time he received letters from all around the world. Please be in no doubt that you as a group made a significant difference in how Aled recovered after his surgeries and for that Gaile and I will always be thankful.
Once again, many thanks for the support you have given, it really has been priceless.
Update 8th April 2012
Aled is doing well with his ACE and Mitrofanoff that he had in July. He still gets affected by infections, but luckily these appear to be less intense.
Aled has been granted a wish by The Starlight Foundation so he is going to New York in a couple of weeks to meet Jake T Austin (Max Rouso) from Wizards of Waverley Place. As you can imagine he is really excited!
Update 27th August 2011
Aled has finally come home! It turns out that he had a nasty infection in both his bladder and his kidney. He has been sorted with antibiotics and has another two weeks of them before swapping to long term antibiotics.
Update 20th August 2011
Aled was admitted to Bristol children’s hospital on the 2nd July for a bladder augmentation. At the same time he was to have the ACE and Mitrofanof formed. It was a big operation with Aled being in theatre for just over ten hours.
Initially all was well until a week after the operation when fluids were introduced to his diet. Sadly this proved too much and Aled was in excruciating agony. In the end they did emergency surgery on Thursday 14th July. This was another 6 hour operation. When we saw the surgeon he said that Aled suffered from serious adhesions which have stopped his stomach from working correctly.
At the moment he remains in hospital with no real chance of coming home just yet. Otherwise he is good though. He is taking it all in his stride and making his mum and dad proud by being as strong as he is.
Thank you to all that have sent cards, gifts etc. They are really appreciated. Thanks also for the box of goodies that was sent to Gaile, this was a lovely surprise.
Update 4th May 2011
Things have been relatively quiet for Aled, he’s had a few hospital appointments but these have just been the routine check-ups.
We are going to Orlando and then up to Washington DC to take part in some research that is being carried out for Aled’s condition.
When we arrive back home we are home for a couple of days, then Aled is being admitted into hospital on the 2nd July for the operation that he should have had in November.
Aled would like to say thank you very much for the cards and gifts that he receives.
Update 1st February 2011
Since we last updated Aled’s page he has had a good Christmas even though he managed to break his arm the week before. So for the second time in 5 years he has spent Christmas with a red cast on his arm.
On New Years Eve he was lucky enough to go to the theatre to watch sleeping beauty. He was even luckier to be invited on stage to take part in a small section with Joe Pasquale. Aled had a really big buzz from this and has now started drama classes and even auditioned for a part in a play during his first session at the drama club.
Yet again though he has been poorly with a chest infection, luckily he is getting over it and is now back in school.
A big thank you to Louise Siddle for Aled’s Christmas parcel, he was over the moon with it.
Update 29th November 2010
Since Aled returned home from hospital he has made slow progress in improving his health. He is back at school but seems to be catching all the chest bugs that are currently around.
He has really enjoyed receiving the postcards and seems to get more decent post than his parents get junk mail.
Update 2nd November 2010
Aled’s operation was cancelled on Monday morning due to Aled having pneumonia. He was put on IV antibiotics and is now on oral antibiotics. We now have a new date in July.
Aled loves having post again and wants to thank everyone for their support.
Aled has rejoined Post Pals.
Update 17th October 2010
Aled has had a relatively quiet 22 months, apart from the follow up hospital appointments. He is now in year 2 of school which he loves and is thriving being at school. He has also started Beavers and he really enjoys going there and even went on a overnight camp with them in July which he thoroughly enjoyed.
He is due to go into Bristol Children’s Hospital on the 30th October and have a surgery on the 1st November. This operation is on his bowels and bladder. He is having a bladder augmentation, a Mitrofanoff and an ACE. We are expecting to be in hospital for 2-3 weeks, and after the operation he will not be allowed to go back to school until at least January. So, as you can imagine, this is a massive operation.
Update 3rd January 2009
Aled had an MRI during December to try and discover why he suffers with pains in his legs; hopefully we will get the results soon.
He was really excited about Christmas this year; he received a video email from Santa, as well as a letter from one of Santa’s fairies which he really enjoyed, as it was left by his bed while he was sleeping.
A special thank you to Aled’s reindeer and Elves who really made a big effort and was really appreciated by Aled.
Also, a special thank you to Julie Barrett and Karen Reece-Mae, who have continued their support.
Update 15th November 2008
Aled had tests on his bladder recently, the results of which we have only just received. It turns out that his bladder is only about half the size of a normal bladder. The bladder neck is thickened and he has spasms when it gets full which causes him to have accidents. He was already on the highest dose possible of his medication, but now it has been increased by 50% which has already caused trouble as the GP won’t prescribe it until she has spoken to the consultant. So we wait to see how the medication will help with the spasms.
Sometime in the near future Aled is going to have a bladder reconstruction and at the same time have an ACE made to help with bowel issues. The down side is that he will have to self catheterize after the op, but on the flip side he will get two operations for the price of one, as the ACE was already expected anyway, so at least he will only have one surgery.
The preparations for Christmas have started, Aled’s list is huge and he is already counting down his sleeps until the big day.
Update 6th September 2008
Aled saw his Plastic surgeon last week to see how his hands are doing after his operation, as well as to check on a problem Aled has with his arm. The surgeon is happy with Aled’s hands but has said that Aled also has an improperly formed elbow on his left arm which means that he cannot rotate his arm enough to do certain things like accepting change from people. This was a bit of a shock to us as parents, as we thought that it was just muscular and needed a bit of stretching… never mind it could have been worse.
On a good note Aled started school 2 days after his 5th birthday, he was really excited about going and so far has really enjoyed himself. Many thanks to everyone that sent a birthday card, he had a major smile when he found out that he had 44 birthday cards. Thanks to everyone that sent a gift too, you are all very generous and thoughtful.
Aled is in hospital on 15th September for a Supa pubic catheter to be fitted before they do bladder tests on the 16th. The outcomes of these tests decide whether he will have a bladder reconstruction or not.
Post Pals is an exceptional website that brings Aled a lot of smiles. He is the first to check through the post when it arrives to make sure that he has his cards/letters first. The generosity of all the people that send cards etc. is incredible, and I thank Post Pals for making Aled so happy with his post.
Update 8th June 2008
Aled has had a quiet time over the last couple of months; his hand has healed well after his last surgery, and he visited Disneyland Paris (again) which he really, really enjoyed. The trouble is that he now wants to go there all the time… if only.
Last month Aled saw his urologist as he has had a lot of problems with his bladder and finding a cause has been a nightmare. It now looks like they have one – some sort of growth on the bladder. This means that he has to have video urodynamics done to check this out and then depending on the results a possible bladder reconstruction. This has been a bit of a shock as we were sort of hoping that his operations were over with, but maybe not…
Preparations are also well under way to getting Aled to school in September. He is really excited about it but mum and dad are anxious about the outcome.
Update 5th March 2008
Thank you everyone that sent Aled a card or gift over the Christmas period, he had a great time with lots of presents and cards. A big special thank you to Aled’s elves and reindeers who made the build up to Christmas an exciting one.
Aled has been in hospital lately to have some plastic surgery on his right hand. He had a lot more work done than was originally expected, but hopefully it will be okay. He had the dressings removed yesterday and his hand looks sore but otherwise okay.
Update 7th December 2007
Aled is currently getting very excited about Christmas, he had an angel visit him while he was sleeping one night (she left some angel dust on the bedside cabinet) and that really put him into the Christmas mood. He is playing Joseph in this year’s pre-school nativity, which we are looking forward to.
We are still awaiting the appointment for his hand operation that we are expecting sometime soon.
At the moment Aled is having lots of trouble with his bladder function, this worries us as he only has one kidney which we want to protect. Hopefully these problems will be sorted soon and won’t turn out to be a nightmare.
Many thanks to Post Pals for their support, Aled really enjoys receiving any mail and keeps it all for people to see.
Hope you all have a lovely Christmas and a great New Year.
Update 3rd October 2007
Another month has gone by and Aled continues to do well with his bowel management, we are changing the routine slightly by changing the equipment that we use, which we hope will make it a bit easier for him.
We had some bad news this month, Aled needs further surgery on his fingers, and this is quite a shame as he had an operation about 18 months ago to separate his webbed fingers but sadly they have rejoined. We have told Aled about the op and he is a bit scared this time (obviously getting older). Hopefully by the time he has it done he will be okay.
Many thanks to all the kind people that have sent cards and gifts; they are really appreciated.
Update 30th August 2007
Aled has had a rough time this month as he is struggling to deal with the intrusive elements of the bowel management. He is out of his nappies during the day though, which is a great confidence booster for him. His next step is to see the plastic surgeons about his webbed fingers; hopefully they can sort something out in the way of separating them.
Aled has had a steady flow of postcards etc over the months but this month has been lovely, he has been really excited when checking the post in the morning.
Update 2nd August 2007
Since Aled’s last update he has had a busy time. At the end of June he went to Cincinnati, Ohio, to a conference about people with VACTERL association. He had a really good time and made loads of new friends, all going well we will meet them in a couple of year’s time when they have the next conference.
These last few weeks have been spent introducing Aled to his new bowel management program. It has been a very stressful time for all of us and we are hoping that things will get easier over the next few months.
Update 10th June 2007
Aled has had a good month so far. He spent a week with his Nan in Wales which he really enjoyed.
He is now set for a busy couple of weeks with an MRI for Hydrocephalus and re-tethering of his spinal cord next week, followed by more hospital and clinic appointments.
After that he is going to Cincinnati for a week so that he can attend a VACTERL conference. This will give him, as well as mum and dad, a chance to meet other families and also to speak to some of the top VACTERL specialists in the USA.
Update 9th May 2007
Aled continues to do well. He has several appointments coming up with general surgeons which we hope will be positive for him. He is also waiting for an MRI to rule out a re-tethered spinal cord as well as to check for Hydrocephalus. He is still a happy and “lively” little boy who wins plenty of hearts. We have just completed his statement process, which was a bit of a nuisance, but hopefully he will get the help he needs at school.
Update 12th March 2007
Aled had a good month; hospital appointments had been quiet but Doctors not so because of chest infections etc. He is now well again and enjoying his time at pre-school.
Update 9th February 2007
Aled did have a quiet month until today when he has come down with a fever and is quite poorly with what looks like tonsillitis. Aled has seen the Urologist about his Neuropathic bladder; he is pleased with the progress at the moment and doesn’t want to see Aled for another twelve months.
Aled has enjoyed returning back to nursery after the Christmas break and is really proud of all his Christmas cards from Post Pals.
Update 27th January 2007
Aled is doing really well at the moment and continues to improve in all areas. We are trying to get him potty trained at the moment but because of his problems it may take a lot longer than initially expected, hopefully things will get easier with bowel management routine but that won’t be until late summer at the earliest. Aled is also noticing that his hands are different as he keeps inspecting each one in turn. We are expecting him to start questioning as to why they are different very soon; neither of us is looking forward to that day.
A big thanks to everyone who sent Aled Christmas cards and a huge thank you to Kate D and Beth Hughes who were Aled’s Elves this year. Aled was really excited about receiving them and was especially pleased with the monkey and power rangers.
Update November 2006
Aled has had a good couple of months, his asthma appears to be staying under control and so far he hasn’t had any serious attacks.
He saw the cardiologist recently who was very pleased with his progress and the reviews are now becoming less frequent.
Aled recently met up with 4 other VACTERL children; it was a good time to see how other families cope.
We are now getting ready for Christmas; Aled is getting more excited and seems to be looking forward to it.
Merry Christmas to you all.
Update 30th September 2006
We saw the orthopedic and plastic surgeon this month to see if there is anything that can be done with Aleds right arm and as expected they have said that things will have to remain the same as any surgery for cosmetic purpose would reduce any use that he could have with his arm.
Aled has spent a few weekends away in the caravan enjoying farm yard walks and egg collecting. He wasn’t too happy when he paid a visit to the dairy farm and the cows decided to do a Number 2 (if you know what I mean) right in front of him… it stunk!
Aled is currently highly interested in the power rangers and any other hero or villain that allows him to dress up.
A big thank you to Karen and Julie for all their post and comments on Aleds website.
Update 3rd September 2006
Aled is well and has just enjoyed a two week holiday in Holland. He enjoyed camping, even if it rained every day (bar 1).
He sees the plastic surgeon /orthopedic surgeon this month to see if they can make some sort of elbow for him as he is complaining of aches and pains in his arm.
At the moment Aled really enjoys dressing up to play and has just had a wooden train track for his 3rd birthday.
Thank you Post Pals, Aled has had a lot of mail and has really enjoyed receiving it. It really does make him smile when he receives a card or message.
Update 31st July 2006
Aled has had a busy month; it started with a meeting with other VACTERL children which took place over a weekend. Then Aled had his cousin and her friend come to stay for a few weeks which was tiring for his mum and dad but very enjoyable for Aled.
Thanks to Julie and Karen for their ongoing support, and a thank you also to Post Pals for your obvious support.
Update 1st July 2006
Aled had a lovely holiday with his Nan and Granddad, but now he has returned home he’s back into a round of hospital appointments. These appointments are to investigate problems with his ankles, as well as ongoing tests to his bladder.
Aled recently started swimming again for the first time since February and is really enjoying it. I think he enjoys getting his mum and dad wet more though!
Update 14th June 2006
Aled is doing well; he is still having tests carried out on his bladder to determine how much control he will have. These tests are likely to go on for a while, but hopefully they will give us a good picture about his future.
He is going on holiday with his Nan and Granddad in June which will give all the family a much needed break.
In July Aled is meeting up with two other VACTERL children; this should be a good time for the families as well as for Aled as it gives us a chance to share experiences.
Aled enjoys opening any cards he gets. We have kept them all so one day we will take a photo of him with them.
Update 15th May 2006
Aled is continuing to do well; he suffers from frequent bad asthma attacks which slow him down (but only for a short while). He has plenty of hospital appointments at the moment as all the reviews seem to come around together. He has just been diagnosed as having a Neuropathic bladder which isn’t a surprise to us because of his spinal issues. Hopefully the consultants can sort out some way of controlling it.
Thank you once again for the lovely gifts and cards.
Update 29th March 2006
Aled’s check-up with the plastic surgeon went well. He had an infection in the skin graft site on his hand so was given some antibiotics by the GP which cleared it up, but we went to see the surgeon earlier than planned in case it had been affected in some way. She had a good look at his hand and was pleased with the results. She also talked about the elbow (or lack of one) on Aled’s right arm; we are seeing her again in September with an orthopaedic surgeon to see if there is some way of making him an elbow. We’ll wait and see.
We had an interview with our local newspaper last week who did an article on Aled and the support group that we’ve have set up in the UK. We also had a radio interview a few days laterwhich Aled’s mum did. She was a bit embarrassed about it but did a very good job.
This week Aled had another bad asthma attack, we think it was caused by the onset of the cold. It proved to be a right nuisance as his mum was minutes away from leaving for work when Aled vomited all over his bed. That is a great sign of him having an asthma attack. It took a few days to get over it but now he is fine, except for the cold that is.
Update 17th March 2006
Aled had his operation to separate his fingers in February. All went well except for an infection which has now cleared up.
Thank you to everyone that has sent emails and cards, Aled really enjoys having the messages read to him and he shows all his cards to whoever enters the house. Many thanks to you all for your continued support.
Update 4th March 2006
Aled went back to have the dressings removed from his fingers last week, it went really well as he didn’t have any anaesthetic (the surgeon normally takes the dressings off under a general anaesthetic) because of a hospital mistake. The skin graft seems to have taken okay and the fingers look okay, just a bit red and swollen. Aled has to go for another check up in about 3 weeks; hopefully they should be all sorted by then.
He had a session with his OT and PT this week, the physio seems to think his ankles need to be seen by a Pediatrist to get an experts opinion. He has also been diagnosed as anaemic so is now on iron supplements.
Update 18th February 2006
Aled went into hospital on the 9th Feb to have his fingers split. The operation went well, but he was really upset when he came out of recovery because his arm was strapped to his chest to stop him from taking the bandages off. Aled has had quite a lot of pain with it this time… his mum says it might be because he is older and feels it a bit more.
Aled go back to Birmingham on Thursday to have the dressings removed on the Friday which he am not looking forward to as it will be a bit sore but it has to be done.
While Aled was in hospital he received a big poster from America which was made up of loads of cards made by children. Each one was wishing him well. It was really smart!
Update 31st January 2006
Aled has had a fairly quiet month with the exception of a few bad asthma attacks. These now seem to be getting a bit better to control which makes life a little less worrying.
Aled has his next operation to split his syndactyly (webbed fingers) on the 10th Feb. This will also include a skin graft from around his groin, so please keep him in your thoughts that day.
Update 30th December 2005
Many thanks to all at Post Pals for such a lovely Christmas and special thanks to Karen who was Aled’s elf; you made his day extra special. Thank you to all the kind people that sent cards, your generosity is incredible. Post Pals has shown us that there are a lot of kind and thoughtful people who will go out of their way to make others happy… Thanks.
Aled has had a fairly quiet time lately, he, as well as his mum and dad have been really touched by the generosity of people around the world. He has received parcels from Canada, USA as well as here in the UK. The support he has been given has been immense. Thank you.
Two weeks before Christmas Aled had what we thought was a chest infection; as usual it started just in time for the weekend so we had to see another doctor rather than his GP. He confirmed that it was a chest infection and gave him the usual antibiotics. After a further 24 hours Aleds breathing was in excess of 60 a minute so we saw his own GP who sent him straight to hospital.
After loads of tests and X-rays the Paediatrician said that it wasn’t a chest infection but a chronic Asthma attack. He was given loads of inhalers and kept in the hospital for the day. The good thing about staying in there for the day was that we got to meet the Plymouth Argyle football players who gave Aled a hat and were about to give him some gloves until they noticed his hands and gave him some sweatbands instead. Aleds Asthma seems to be under control and he was well again for Christmas.
Aled was really excited about Christmas, especially when we placed Rudolph’s glitter food outside on Christmas Eve. When he woke up in the morning he opened his stocking and was really pleased so he shouted ‘thank you Father Christmas!’
We are still waiting for a date for Aleds next operation on his right hand, hopefully that will be soon after the New Year.
Update 19th November 2005
Unfortunately Aled has been poorly this week with a viral infection. Aled also saw the cardiologist this week who says the patch on his heart is really good and doesn’t leak, but he has a leaky heart valve which the doctor will keep an eye on.