Summer P

15 June 2012

Story written 2006

In March 2005 Summer was admitted to A&E for tests. She was not walking, had projectile sickness and we were concerned about her vision. An MRI scan showed a brain tumour (benign and slow growing). Summer’s ventricles were blocked and she had Hydrocephalus. She was transferred to Alder Hey Children’s Hospital, Liverpool. After an 8 hour operation, Summer had pulled through and was in intensive care, but we were informed that Summer was now blind.

In August 2005 the MRI scan showed re-growth, so Summer had a central line inserted and started Intense Chemotherapy for four months. At Christmas, Summer’s scan showed the tumour was stable, we can’t explain the relief. Summer is still currently on chemotherapy until February 2007. Her recent scan has showed a slight shrinkage in her tumour which we are overjoyed about.

Summer has adjusted to what bit of vision she has in her right eye and uses it well to navigate familiar surroundings. She is a little miracle. We are so proud of her; she is a very happy little girl and makes everyone who knows her smile.

Keep fighting Princess!

Update 6th February 2011

We are so so relieved to have received such good news for Summer’s scan results, it is the first time in 5 years that we have been for results and not had a ‘BUT…’

Summer’s next scan is in June. She is still not out of the woods as she still has residual tumour remaining in the optic nerve area and we could still face relapse at any time in the future, but are really grateful that we have the time in between to enjoy, and her prognosis for the future is getting more positive too.

We decided to continue with the daily growth hormone as Summer has grown 3cm in the last 4 months and without it affecting the tumour growth. We are extremely relieved and hope to give her the benefits it will bring.

Summer has other outpatient appointments this month and next and we are back at hospital in May to see her other consultants about her growth levels.

Thank you to everyone who has sent positives thoughts and wishes, it really does work. We send our thoughts to the other Post Pal families too.

Thank you for the lovely memory parcels for Summer and Phoenix, the note pads, letters, cards and pictures. Our children are very grateful.

Post Pals is a truly wonderful and hardworking charity. We are very privileged to be a part of Post Pals and continuing to spread the smiles.

Update 2nd January 2011


Santa was very kind to us all but sadly Summer got a sickness bug on Christmas Eve and was poorly through the night and then it was passed onto all of us over the Christmas period, but thankfully we all feel much better now. We would like to thank EVERYONE who sent the children Christmas cards and gifts and to the assigned reindeers and elves, our children are extremely lucky and love all their post.

Summer has her MRI Scan on the 12th Jan so we have everything crossed for stable news. Sadly this time we do have to wait longer than usual for the results (which are the 25th January) but we have booked some pantomimes and other activities in between to keep us all occupied. All being well, if there is no change, Summer will continue on her growth injection despite it not being pleasant, but she is coping really well with it and we all wish for the benefits it will bring.

Thank you for everyone’s support and smiles that they bring into our lives and a massive thank you to Hayley who was Summer’s assigned Pal last year, we will continue to stay in touch. Thank you to everyone from all around the world for their cards and thank you to Jenny and Pippa for writing to Summer in Moon, it was very thoughtful. Thank you to the Elves for sending the children amazing parcels and gifts, it was extremely kind and thoughtful.

Update 4th November 2010

Apologies for missing our September update but we are having building works done. Hopefully all will finish soon and we can get back to normal though.

Summer is doing well at school and has started learning Braille again which she is enjoying. She has been taking her daily growth injection too and being extremely brave. The children went to watch Disney on Ice in Manchester and loved it. Summer’s next scan is 12th January so we are going to enjoy Christmas and see what the New Year brings.

Thanks to everyone who sends post and parcels. Apologies if we have not had chance to reply but we are very grateful and it really does make the children smile. Many thanks to Post Pals for the Halloween goody bags – the children were delighted! Thank you to everyone who takes the time to write and the thought that goes into the parcels is overwhelming.

Update 16th September 2010

I have mixed news. The great news is that Summer’s tumours remain stable with no new progression at present – we had a long chat with the consultants regarding Summer’s prognosis and future treatment – he stated that the lesions near her brain stem that showed growth in January are new and not from the original diagnosis in 2005 which is the optic nerve and hypothalamus region, so they will continue to monitor her closely and re-scan on 12th January. He also said that with this type of tumour he would expect relapse within the first 3 years of having chemotherapy but it has been known for some patients to relapse within 3-6 years of treatment. He also confirmed that chemotherapy works for 35% of patients to keep them in remission, but sadly we know this isn’t the case for Summer. Just to add to our worries, they are still insisting that growth hormone is not linked to tumour progression and the importance this treatment is to Summer’s future health.

We have until January to give our decision if not sooner. There is no right answer or easy solutions without high risks – it is like a rollercoaster ride you can never get off. On saying that, we do have so many positives and that is seeing Summer waking up every day with a big smile asking what’s happening today!!

To Post Pals and all your support who deliver smiles on a daily basis, you really are all tremendous and we are extremely grateful – I know the children love Post Pals, so thank you!! With thanks this month to:- Benedicte, Mandi, Hayley, Sam King, Viks, Sheelagh Hawkins, Katie, Nikki, Jade Sherwood, 2nd Chirk Brownies, Teresa. Apologies if I have missed anyone.

Update 19th August 2010

The children have had a lovely month of post. Thank you to all the Team – especially for their unique pillow cases as it really is a wonderful keepsake. Also, many thanks for the Alton Towers Tickets. We all had a wonderful day out and Summer was so delighted riding a car with the Peugeot Driving School with the help of the staff steering the car for her. The highlight of the day was having her own driving license, bless her.

Thanks to Josh Turner for the lovely card and badger as it’s so cute, to Sarah G for the postcard, Ella, Theo, Poppy and Imogen for their pictures and cards, Sam King for the princess pencils and rubbers, Hayley Rose for the Summer Theme Parcel which is so very kind, Karen for the card making items, Mandi for the Camper t-shirt, yellow campervan, stationery and little horse and letter, Jodi for the Bob the Builder colouring set for Phoenix, Kate for the Campervan picture and postcard. Our children are very lucky.

Summer has her scan next Friday so we are thinking lots of positive thoughts and will update when we have news.

Update 5th July 2010

We would like to send our thoughts and wishes to all the Post Pals families and let them know that we are thinking of them.

Summer had a hospital appointment this month and she has a sticker chart for when she eats new fruit and vegetables. With her not being on the growth hormone injections at the moment, we have to be careful what Summer eats to maintain a healthy lifestyle for her. She is doing really well and trying very hard. Summer also has her next MRI scan on the 27th August.

The children have had another lovely month of post thanks to everyone at Post Pals!

Phoenix had a lovely birthday with a few friends in the garden on his bouncy castle and would like to thank everyone for his cards. Summer has been over the moon with her post this month and is delighted at all the notebooks and pens that she has received. Thank You. We will try and respond to all who leave an email or address.

We have a new addition to our house called Eric the tortoise (that was his name already so we thought it was only fair to keep it)! The children love him and he’s also very tactile for Summer to feel. Even Star (our rabbit who is nearly eight) has accepted him into her garden too which is lovely.

It is nearly the end of another school year and I cannot believe Summer will be gong into the Juniors – it has gone so quickly.

We are going to a VW Show this weekend with the children so are hoping for some sunshine.

Thanks to:-  Halfcost/Post Pals for the dressing gown, paint your own plant pots, the cars for Phoenix, handbag/shoes pencil case, mp3 pillow stereo, light up flower. To Jodie for the Kitty pens, Hayley for the fame pencil case and miss chatterbox soft toy, Steph for the notebook, Grace/Jill for the notebook, Sarah for the notebooks, Jess for the card, Teresa for the notebook, and Sheryl for the notebook. We would also like to thank Hayley for the very kind parcel for Father’s Day. Apologies if we have forgotten anyone but thanks so much.

Update 15th June 2010

Summer has been doing really well at school and has earned a certificate and medal from her specialist teacher for effort. We had a busy half term taking Summer and her siblings to Woburn Zoo safari park which was brilliant and we would highly recommend. There is also a walking safari so Summer could walk really near the wallabies and baby monkeys, and she went on a swan boat with daddy too. We then went camping near the coast in our campervan and were very lucky with the weather as we had bbq’s and spent quality time playing outside.

Summer still goes horse riding each week and really looks forward to it. There is a new horse that Summer has ridden called Pebbles and last week she was on Toppy.

This Friday she is starting private swimming lessons. She goes every week with school but as she likes it we want her to have more opportunities on a 1:1 basis.

Next week we look forward to seeing Summer’s sports day and the end of year assembly.

Summer has got a hospital appointment at the end of the month but her next MRI Scan is not until the end of August so we appreciate the time we have to enjoy together.

We are so grateful to everyone who takes the time to write and send gifts; hopefully we will try and reply. We have so much thought and kindness being sent through the post and it’s nice for me to read other people’s interests and hobbies to Summer – she says she feels lucky to receive her post. We’ve received a CD, craft, teddy, bags, stickers, balloons – everything our children could wish for and more! It’s very kind!

Hope we don’t miss anyone out but THANKS to… Bethan, Amber, Hayley-Rose, Sarah G, Iona, Natalie, Samantha, Jazz, Nicola, Caroline, Sam King, Leonie, Despina, Paul, Stef, Baby Keera, Polly F, Sophie, Stephanie, Dominic, Karen & Family, M.Thacker, Laura, Billie, Becky & Sohpie, Castercliff Primary (Lucy, Shone, Kayleigh & Kiera), Melissa Basquil and more!

Update 5th May 2010

We are so grateful and thankful that Summer’s results were so amazing – it has given us another 4 months until the next scan the end of August. We just need to make the decision of starting the daily injections again which is a very difficult decision but I know we will do the right thing for Summer.

Summer and Phoenix have had a fabulous amount of post thanks to Post Pals and Russel Howard – I am so pleased that Post Pals is getting the recognition it deserves and that people are finding out about the great work that the Post Pals Team do! The children’s smiles are priceless; they get so excited when they receive their post – thank you!!

I hope we don’t miss anyone out but thanks go to:- Hayley- Rose, Sarah G, Lesley, Steph, Francesca and Scarlett, Libby, Cavelle, Emily & Mummy, Sean, Matthew Kenyon, Liz, Stephanie & Baby Lucas, Heather & David, Maria& Michael, Kate Dee, Margaret Nagy, Suzie & Taylor, Willow, Horndale County Infant School, Helen Clark, Lucy N and emails from Suzi Mooer, Nicola Presavage, Bronn Broker, Rachel Samuels, Lesley & Tyler, Victoria Moloney, Nicole Finlay, Ally Seddon, Jessica Chapman, Andy Gibb.

Update 27th April 2010

We went to Clinic today for Summer’s results and feel like a miracle has happened… her tumour has had shrinkage and is smaller than the growth in January. There is no real explanation and I cannot describe our happiness and relief to have such a weight lifted for the time being! Summer is still under close observation and will require another MRI scan in 4 months time – we do have a tough decision to make in starting the daily growth hormone injections again which is just as important to her health and keeping the tumours stable.

We cannot thank Post Pals enough for their tremendous support and messages that have been sent in the past couple of weeks. Whilst we feel we can breathe a little easier now and have a little celebration, we also wish to send prayers and positive thoughts to the families who need it at the present time.

Love, hugs and smiles, from Summer and family XXXXX

Update 11th April 2010

The children both received some lovely post last month, thank you so much to everyone who sends mail, it is extremely appreciated.

Summer had a wonderful birthday, it was very special and even more so to have shared Mother’s Day on the same day! The animal party went down a treat, it was a great tactile idea for Summer and her friends enjoyed it too. Summer also had two visits from the tooth fairy in one week so she was very pleased.

Summer has had some hospital appointments over the last month but everything is on hold until we have the scan which is less than 2 weeks now. The nerves are setting in but we are being brave and strong for Summer as she is so aware of everything now she is older and we don’t wish to tell her too much, but don’t want her not to be prepared either! So thanks for everyone’s continued support. We will not know the results until the 27th April so will be able to share this with you then.

We had a week away over Easter and stayed in a little English cottage and had days out. It was fantastic quality time with the children despite the rainy weather and once we arrived home the Easter Bunny paid a visit. Hope you had a lovely Easter too.

Thank you to everyone who takes the time to send our children smiles and I would like to say a special thank you to Hayley for thinking of me on Mother’s Day and for my gift – it was such a wonderful surprise.

Update 1st March 2010

Thank you to everyone at Post Pals and for welcoming Summer’s return. Summer and Phoenix have had a great Postie Month, it really has made them smile and excited.

Summer has got hospital appointments this month and her birthday which she is very excited about. We have booked her an animal party so she can feel and hold them if she wants too.

April is a big month for us as she has her MRI Scan which will determine whether she goes on chemotherapy treatment again every week for two years. So we have everything crossed for her.

We would like to thank everyone who sent Summer and Phoenix post this month – Emily Holden-Storey for the beautiful gifts, Laura and Jamie for the photo and lovely letter, P – card, Rosie – card, Sarah G lots of cards, Williams S Valentines Elephant, RKEM Designs for the beautiful hand made bag and purse, Niamh W beautiful gifts, Hayley-Rose cards and Audio CDs. Our children are very grateful, thank you. Apologies if we have left anyone out.

Story update January 2010

Summer left Post Pals for a while as she was doing really well. Unfortunately, scans in January 2010 have shown new tumour growth, so she has re-joined.

As she is currently well in herself, her parents are going to wait until the next scan in April before deciding what to do. They then might have to start second line weekly chemotherapy for another 2 years or radiotherapy.

Update 9th February 2009

We are delighted to inform you that Summer’s scan results remain stable and there is no new progression, which means we have 6 months of breathing space until her next scan (which is a week before I am due to give birth!). They said it is priority now for her to start growth hormone injections, as it was first noticed nearly a year ago, so she will hopefully commence them after the next scan if that remains stable.

The day of the scan was quite traumatic for Summer. She had the magic cream put on which she was fine with, but when they tried the cannulas they wouldn’t go in as her veins had collapsed, so she had to have gas. They then told us that her Consultant was away until the following week so it was the longest weekend we had had in a very long time. Thankfully it was a positive result which we are truly happy about but cannot begin to describe the anxiety of waiting and not knowing.

Summer has started doing swimming at the Blind school that she attends twice a week and she is enjoying it. She is getting confident with her moon too and is now spelling words and can read moon letters. We are so proud of her progress, she is working very hard.

We have made a decision in that we feel extremely lucky that Summer has been treatment free for nearly two years and feel that it is time for Summer to move on from Post Pals so that it gives a chance for other children in need to receive the wonderful support and smiles that you can give on a daily basis.

I cannot begin to explain the happiness and positive thoughts that Post Pals has had in our lives over the past few years and it has certainly helped Summer to keep on fighting through her journey and keep her smiling every day. Summer wants to be a postman when she grows up like her daddy so she can deliver some cards to children who need a smile.

We will still regularly check on the other Pals and send post though and keep you updated on Summer’s progress.

We would also like to send a cheque to Post Pals to show our appreciation and to keep the smiles going.

Thank you all so much!!

Update 30th November 2008

Summer is remaining well apart from a lump on her right eye lid. It is looking like she will need an operation to remove it as it is getting larger, so we are going to be moving forward her eye appointment.

Summer has also recently started a dual placement where she attends mainstream school 3 days a week and a Visually Impaired school 2 days a week and it’s working out well. We are so proud of how Summer has settled and she is working so hard. She is now reading words in moon which is a type of braille and she is so happy about it.

Summer is delighted to be a Christmas Elf again this year and I think if she could she would love to buy everyone a gift!

Thanks to everyone at Post Pals who continues to send post to all the Pals, including Summer, it really is an amazing charity and well done to Viks for her award, it’s so deserved!

Update 11th November 2008

Summer had such a wonderful posty month and from people in America too!

Summer has had quite a well month apart from that very nasty sickness bug that everyone had.

We enjoyed a few days away at school half term with friends in Abersoch and the children loved the freedom of being outdoors despite the freezing weather. We also took a trip to Gloucester to collect Summer’s new red trike and she was so so excited it was wonderful – so we have wrapped up warm and been on a few short bike rides.

Summer has got an eye appointment in December so we will be able to find out if there are any changes.

Summer would like to thank everyone who kindly sent her cards (including handmade ones), letters, and craft presents. Thanks to Erin and Kyle for the dolly and pony, Kate for the amazing craft box, Laura for the cuddly squirrel, Maria and Michael for the Halloween card, Maddie for the Summer card, Margaret in America for the Smile Card, Helen for the fabulous Campervan Card, Jane for the Disney CD, Garce for the pencil holder maker and jewel box set, and so many more, apologies if we haven’t mentioned everyone but Summer is so grateful and feels so lucky to receive post!


Update 30th August 2008

Summer has been busy having lots of days out on picnics, feeding animals, quad bike riding, collecting shells on the beach, lots of craft activities, horse-riding, and it has been great fun.

Summer had her MRI Scan this week and despite her appearing extremely well and healthy with no symptoms; the scan has revealed a new mass next to her brain stem. The Oncologist cannot confirm whether this is tumour or not but there has been growth since the last scan. It is too risky to biopsy, so the plan for now is to observe until her next scan in January. If there is more change then Summer will need to start weekly chemotherapy again for two years! As you can imagine we are pretty gutted but have decided to have as much fun and experiences between now and January just in case our journey takes a different path.

Summer has received some beautiful cards and gifts this month, all very thoughtful. We really appreciate the time and thought that goes into making these beautiful cards, thank You! Thanks for everyone’s continued support it are very much appreciated.

Update 4th August 2008

We have been enjoying the start of the Summer Holidays – in fact the time is going very fast. We had a few days in Stratford last week and took Summer and her baby brother to the Cadbury’s Factory. We had a great time tasting chocolate and the tour was great. We then went to Abersoch for a few days and stayed with friends – Summer and her daddy went quad biking! I couldn’t believe how brave Summer was – she was having the time of her life!

Summer didn’t enjoy swimming lessons and she said ‘please don’t take me back’. To be fair, it must be frightening with little vision, so we have decided to wait until Summer feels more confident in the water. She loves her horse riding lessons and this week is going on a special Horse Riding Picnic at a different Riding School – she is very excited!

Summer’s scan is in two weeks and she is getting a bit anxious now and asking questions. She also has to have two teeth taken out while she is under anaesthetic, so your thoughts will be appreciated on that day. In the meantime, we plan on sharing lots of experiences with Summer and her little brother before she goes back to school.

Thank you to everyone who sends Summer post and follows her journey – apologies for not making the Post Pals party but hopefully we can attend in the future.

Update 3rd July 2008

Summer has had yet another lovely month of post, thank you to everyone from Post Pals! Thank you to everyone who thinks of little Summer and ALL the brave children!

Summer has started horse riding and absolutely loves it. We were not too sure whether she would like it or not but want her to have as many experiences as possible. She is going again tonight and the horse that Summer has been riding is called Libby.

This weekend Summer is going to start swimming lessons. She is confident now about going into the water, whereas before she couldn’t go because of all her chemotherapy treatment and central line. We will let you know how it goes.

We have been back to the hospital and have been told that Summer will require daily injections for many years but we have time to make our decision. Summer’s next MRI scan is in August! We have everything crossed for that.

Update 6th June 2008

We have had a brilliant time – in the half term holidays we picked an activity or an outing out of a hat so everyday we had something nice and fun to. We went on a walkabout picnic, swimming, did craft activities and Summer actually let us paint her hand so we could have her and Phoenix’s handprints, yay! We had a great day out with National Children’s Blind Society and Summer loved it, she got to play on the drums and electric guitar, meet people similar to herself, jump in the ball pond, pick some eggs the hens had laid – it truly was a fantastic experience for all of us!

This weekend we are away again in our VW Campervan to a show – weather is looking good. Plus baby Phoenix will be 1 this weekend so Summer is very excited for him.

Appointment wise, this month we will meet with Summer’s Endocrine doctor to discuss treatment plans and also the Dentistry Dept have sent their referral through so we have a few things to be going on with.

Summer has received some lovely cards this month – she said “I cannot believe how nice people can be to send cards and pictures to me!” Special thanks to the Post Pals Team and Laura H for the wonderful craft set and fluffy bag! To Jim for her wonderful smell card, it was very impressive and thoughtful. To Kate W again for a beautiful card, Shirlayne, Elidh, Emilia and Aine for their wonderful hand crafted Braille card and Hayley Thorn for her beautiful handcrafted postcards. We hope we haven’t missed anyone out. Thank you all so much!

Update 1st May 2008

We got some news this afternoon regarding Summer’s blood results. Unfortunately they are not what we wanted to hear – she is going to need growth hormone injections daily. So we’re really gutted for Summer as she has been through so much in her little young life.

Update 31st April 2008

We are all doing fine. Summer and Phoenix have had a wonderful month of post and parcels thank you all at Post Pals.

Summer was in hospital last Friday to have hormone level tests and ultrasounds – she was beyond brave – she was starved from Thursday at midnight and couldn’t eat until Friday lunch time. Over the course of 4 hours she had 9 blood tests and she wouldn’t eat and drink after the tests so when she went to ultrasound she didn’t have enough fluid inside, so after another hour we went back and they were able to do the scan. We are awaiting the results now to see if she needs growth hormone or any other medication.

Summer has also got the dentist next week. She needs to be referred to the hospital to have her tooth taken out as she has had an abscess and due to the chemo and diet on treatment, her teeth are now very weak. So we will keep you posted on news.

Special thanks to Shirlayne and family for cards, jokes and the fabulous card making set. To Post Pals for the Louis Vuitton bag! Grace for the hair accessories, she loves them! Also to Lynn for the beautiful fairy doll. Thanks to Jenn, Helen F and Seren S too. Thank you all for putting a smile on Summer’s face, it makes more of a difference than people realise. She was especially happy when she knew her brother had received mail too so thank you!

We are so grateful and overwhelmed that so many people take the time to think of our precious children and to put smiles on their faces everyday .

Update 11th April 2008

We would like to thank everyone at Post Pals! Summer received a lot of mail this month and she was so excited everyday.

March was a very eventful month for us. It started with Summer’s 5th birthday, where she received a staggering 60 birthday cards and all the princess goodies that you can buy! She was extremely happy to receive some sweets through the post, a reiki teddy, handbag, hair accessories, cd’s, stickers, everything that she could have wanted and much more.

Summer then went on to have her MRI scan, which she was very worried about going for, but again amazed us with her bravery! We are delighted to say that her tumour remains stable after a year off chemo, but she does require further endocrine tests, which she is going for this month. She is having her hormone levels checked and an ultrasound.

Then it was Easter! Again, thanks everyone for their lovely Easter cards. I don’t think Summer could believe she had much more post than mummy and daddy and she shared it with her baby brother! We did a treasure hunt which she loves.

The end of the month we had a week up in Scotland, it’s so relaxing we could have stayed there! The children loved the freedom and enjoyed making some new special friends. We had days out to an animal farm, a castle, crafts, it was brilliant.

Now it’s back to school!

Update 29th February 2008

Summer has had a fantastic month with Post Pals, thanks to all who have sent Summer cards and presents, even Valentine’s cards from abroad!!

Summer has had a mixed month complaining of head aches and falling over far too regularly, bless her. She is doing brilliantly at school and her progress is great. She has learnt to type S in Braille and can spell her name verbally.

She has been very socially active – swimming, days out, picnics, playing with friends, the cinema, and lots of birthday parties!

Summer is going to be 5 on the 14th March – what a celebration for us all! It is 3 years since Summer’s diagnosis. Her scan is on the 17th March and we have to wait 8 excruciating days for the results, but as soon as we know we can let you know.

Summer has grown 3cm in the last six months but it is very below average
compared to her weight and age, so we will be meeting with the Endocrine team to discuss if Summer requires any intervention yet, but hopefully not .

We are going to Scotland for a week at Easter and really looking forward to the sea air and quality time with Summer and Phoenix.

Thanks Everyone!

Update 30th January 2008

Apologies for it being late, but I would like to thank everyone who sent Summer parcels and cards at Christmas!

Summer is still doing really well. She has settled into school and is very popular, especially with her being pretty small as everyone wants to look after her. This is nice but Summer is very independent and likes to feel that she can manage on her own, which is understandable.

We went to Euro Disney for 4 days last week and had a magical time. Summer was so happy to meet all the Princesses (her favourite being Cinderella) and Phoenix loved all the characters. It was an experience we can treasure forever!

Summer is going to the dentist this week for 2 fillings which is pretty bad at her age, but I think the chemotherapy has had an impact on her teeth. I will let you know how that goes!

Summer is 5 in about 6 weeks which is an absolute miracle for us especially, after her diagnosis at 2, so an extra celebration for us. Two days after her birthday, Summer has her next MRI scan to determine if there has been any further tumour growth. She will have been off chemo for nearly a year by then. So fingers crossed.

Summer has started learning Braille in reception class now and seems to be enjoying it. She can spell her name but cannot write it yet. We are so proud of her!

Thanks again to Post Pals for their continued support, it really helps!

Update 4th December 2007

Summer has caught a cough and cold from school and it has wiped her out, bless her. We had two hospital appointments last month, one with our local Paeditrician to see how Summer’s growth and weight is. After all the chemo she has had we are waiting and observing at the moment, but next March we might have to intervene with growth hormones if Summer doesn’t start growing soon. Hopefully all will be ok. We also saw the Eye Specialist who was over the moon with Summer, he said she was very co-operative and a little angel. He also said her vision has not improved, it’s her ability and confidence that has, we are so proud of her! Our next MRI Scan is on the 17th March just after her 5th birthday (which will be another personal and double celebration for us all).

We are all very excited about Christmas. It is extra special for us this year as it will be the first Christmas we will be at home as Summer isn’t on treatment at the moment. It will also be Phoenix’s first Christmas too.

We are very fortunate enough to be going to Lapland next Tuesday, we haven’t  told Summer yet so it is a bigger surprise.

We would once again like to thank everyone including Post Pals for all their support and parcels and cards that Summer has received this year. We are eternally grateful and are so happy to be able to be an Elf this year and make someone else happy.



Update 1st November 2007

Summer has had a brilliant month receiving post it’s been lovely for her. We also have some really great news! Summer’s scan results were positive; there has been no tumour growth since the chemo completed in April, so 6 months off treatment now.

Summer’s scan day was very traumatic for her, they put magic cream on both hands and tried 4 needles in one hand and two needles in another before deciding that she would have to be put to sleep with gas as her veins have collapsed and they couldn’t put a cannula in. It was so upsetting for her and for us, when she woke up from her scan she was hysterical as she thought something was still happening to her so it took us an hour to calm and reassure her that she was ok.

We can now celebrate our first Christmas in three years with Summer well and we cannot wait.

We all had a fantastic time in Scotland, Summer held a giant cockroach! She touched lots of animals, we visited a farm, a transport museum and even saw an Old VW Campervan just like ours!! We also went to a science museum which was very busy because of school holidays, but it was very tactile and sensory and was a great day out for us all! At night we would walk along the beach and enjoy the sea air and Summer made lots of new friends.

In the half term holiday we took Summer to visit Thomas the Tank Engine Tour which was at Llagollen Railway and she thoroughly enjoyed it. We also went swimming, Summer was so brave she went into the water with the arm bands and enjoyed splashing her legs while we held onto her. She has been a very busy little girl.

She is very tired this week as she has got a bad cough and a high temperature but nothing we cannot fix without lots of cuddles and kisses as she has lots of birthday parties to attend to; she has a better social life than mummy and daddy!!

Thanks to everyone at Post Pals who has sent Summer post, we really are very lucky.

Update 30th September 2007

Summer has started school and is really enjoying herself and making new friends. Phoenix is nearly 4 months – time is flying! We are going to Malcolm Sargent House in Scotland in October, just before her next MRI scan. We have all been invited to watch Disney on Ice this coming weekend, which Summer is really excited about. Friends of ours are doing a Charity Party in Aid of Summer and Alder Hey’s Ronald McDonald House.

We would like to thank everyone for their continued support and to post pals for sending Summer’s cards and gifts! She loves it when the postman comes!

Update 12th August 2007

We have been doing a lot of camping lately with Summer and her brother Phoenix, taking them to various VW Shows around the country.

We had a letter through the beginning of last week to say that Summer’s operation to have her central line removed was going to be 2 days later. We were surprised but relieved as we were hoping that it would be taken out before she starts school in September. She was extremely brave as we had to starve her from 7:30 Thursday morning and she didn’t go down to theatre until 4:30 in the afternoon. She was very patient and understandably got bored, but didn’t ask for food once, bless her. We are very proud of her. So the next day we took her shopping and she picked some Cinderella glass slippers from the Disney shop but was more excited about going to McDonalds for lunch! Easily pleased!

Can we take this opportunity to thank Post Pals and all the people who send and have sent Summer cards and parcels throughout her treatment. Summer will continue on observation until further treatment is required in the future. Her next MRI Scan is booked for the 22nd October. We are due to go to the Malcolm Sargent House in Scotland in October too, so we are looking forward to that.

Best Wishes,

Julie, Brent, Summer & Phoenix.

Update 9th July 2007

We have received Summer’s MRI results from last week and we are extremely happy to share the good news that Summer’s cyst and tumour remains stable even after completing chemo in April and she has had no new growth which is such a relief.

Summer is staying well and looking really healthy. She has been enjoying attending a few afternoons at the Primary School which she will start in September.

She is doing a great job of being big sister, we are so so proud of her. She was really brave when we took her back to hospital after having a three month break and the difference is unbelievable – she is so aware of what is going on and is always asking questions.

Thanks to Post Pals for their continued support. Summer loves receiving her cards, they always make her smile.

Update 11th June 2007

We have our new baby! Phoenix Ethan was born on 7th June at 8am. He weighed 7lb 1½oz. Summer is very excited and is besotted with him. She is such a good helper it’s great.

Summer has her next MRI Scan on the 5th July, and then we meet with her Consultant on the 17th July for the results. Summer has been very well since completing chemo and her appetite has come on in leaps and bounds, we are so proud of her.

Thank you to everyone who has sent Summer presents and cards, it really does make her smile and she loves waiting for the postman in the mornings.

Update 6th May 2007

Summer completed her last chemo on 12th April but she required blood transfusions and had to stay in hospital for 5 days afterwards to recover from an infection. The relief of the chemo being completed is strange but wonderful. Summer looks much healthier but is a little confused as to why the hospital visits have stopped. We would like to thank Post Pals for their surprise card announcing Summer had completed chemo we will treasure it forever!!

We have had a meeting with Summer’s Oncologist and he has decided for Summer to keep her central line in for a while longer so that if surgery is required in July to remove the cyst growth, it will be easier for her. More decisions will be made at the next MRI Scan on the 5th July, so feeling rather nervous.

Summer’s baby brother is due in 4½ weeks so we’re very excited now!

Update 3rd April 2007

We have had a mixed month with good news and bad news. Summer celebrated her 4th birthday which was a very special day for all and she thoroughly enjoyed it. She is now very excited about the Easter Bunny coming.

Summer had her ear operation just after her birthday. The brilliant news is that while she was under anaesthetic, they realised she didn’t require any grommets. Whatever was there had resolved itself and the relief was indescribable. We were over the moon!

Summer had her MRI Scan last week and we have been informed that while the solid mass tumour is still stable, we have had no more shrinkage. Summer has new Cyst growth very near to the tumour and it is one that could give cause for concern, possibly surgery. We meet with Summer’s Oncologist and team at the end of the month as Summer is completing Chemotherapy next week after nearly two years (another private celebration) and starting observation. She is to have a kidney function test this month to check on her kidneys now that the chemo will be finished and have regular hearing checks too. Obviously, we have mixed feelings of excitement and fear, but we are staying positive.

Summer’s next MRI scan is the 5th July so we will wait and see what happens next. Fingers crossed. Summer’s baby brother will be about 3 weeks old, so we will be very busy and occupied which will be good.

We would like to thank everyone at Post Pals for sending Summer parcels and cards for her birthday and for all the supporting messages that she has received on her Website. Summer was post pal of the month and it was her birthday too – she received lots of cards and presents, so thank you to everyone who posted to Summer. She was extremely excited and waited for the postman every day!

At the moment Summer is very well, she will probably require blood transfusions at the end of the chemo cycle, but then she will be put on the waiting list to have her central line out which will be fantastic. Summer is already telling everyone that when “Wilbur” (central line) goes in the bin, we are going to teach her how to swim!

Update 2nd March 2007

The last couple of weeks have been very distressing and upsetting for Summer as she has not been happy about going to hospital and having her treatment or co-operating with the hearing tests. She has been so brave throughout all her treatment and is now probably fed up of being touched and the constant invasion.

She completed her chemo cycle yesterday and her blood levels are all low but because she is border line they are not transfusing just yet.

Summer has her ear operation booked for the 16th March just after her 4th Birthday which will inform us of what is in her ear and if they can remove it.

Summer also has her MRI Scan this month on the 29th March and double chemo the same day, so a very busy month for her and us.

I was in hospital last weekend with a false alarm for an early labour (I’m only 26 weeks pregnant!) I think all the stress is catching up with me, but I have to say Summer was a little super star and has been my little helper all week and is looking after me. We are so proud of her.

Thank you to everyone who sent Summer post, she received some great gifts including: – comic relief ears, some cd’s, a hand puppet and more. It really made her smile.

Update 20th January 2007

Summer is currently in hospital at the moment, she completed her 3 week cycle of chemo on thursday and all her blood levels are low and she needs platelet and hb transfusions. Her temperature also went to 38.6 so they started her on IV drugs for 48 hours. We were hoping to take her on a little holiday tomorrow but hopefully will be able to go on Monday if she is well enough.

Summer is going to be a big sister and is very much looking forward to it! We are having a baby boy!

Update 30th December 2006

Summer had to go into hospital Christmas day tea time but luckily was allowed out 4 hours later with oral antibiotics.

Summer received lots of Christmas Cards and was very excited every morning when the postman arrived. Thank You to EVERYONE who sent Summer post in December. Thank you to everyone at Post Pals who sent Summer a Christmas present and to Summer’s Elf; as it really made Summer’s Christmas a special one and despite being poorly she was still happy and Post Pals made that happen.

Update 1st December 2006

Summer has received a lot of post in November and it made her very happy and excited every morning. She has had a good month, maintained her weight and is still currently having chemotherapy. She will be home this year for Christmas which is fabulous and her next MRI Scan will be 21st Dec 2006. Thank you to everyone who has put a smile on Summer’s face!

We would like to thank all the children at a School in Manchester who sent Summer letters and pictures about themselves, that was lovely. Big thanks to Kate, Despina, Nikki, Cheri & Itsy Dog, Kelly, Charlie beautiful pic, Aamilah & Uzayr, Julie Barett and many more.

Update 3rd November 2006

Summer has had her MRI Results from September – her tumour is still stable but no more shrinkage. She will complete Chemotherapy next April. She has another MRI Scan on the 21st December. She had two transfusions last week and has just come back from a holiday at Malcolm Sargent House in Scotland.

Summer would like to thank Hwee Hoon for her lovely postcards from Singapore, Tibet & Turkey and her bracelet it was also touchy feely. Also thanks to Julie Barrett for the Halloween card and balloon.

Update 1st October 2006

Summer had her MRI Scan last week and we are painfully awaiting her results, we will let you know as soon as we can. She is pretty well at the moment; she is having a kidney function test and hearing test this week before starting her 3 week block for chemotherapy.

Summer received a touch and feel book which she loves and a handbag that you make yourself. Summer loves receiving mail (her daddy is a postman!) and the postcards from around the world are fantastic, so thanks everyone!

Update 21st September 2006

Summer has her next important MRI scan on the 27th September.

Update 2nd August 2006

Summer is still in hospital with a high temperature. She has been given a third antibiotic because she is neutropenic (no immune system). Her bloods have just come back and she needs a platelet transfusion and magnesium infusion together with other medicines. Tomorrow they are going to give her a blood transfusion along with the antibiotics and then she will be transferred to Liverpool Hospital for Chemotherapy on Thursday.

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Stephanie W

15 June 2012

Story written 2005

Stephanie was diagnosed in may 1999 with Juvenile Battens Disease.

She was slowly going blind from the age of 5 but the specialists refused to believe us and said she was “hysterically blind”- i.e. making it up! She and our whole family were put into “therapy” resulting in six farcical months delay before parents insisted in being referred on. The diagnosis was followed quickly on seeing a specialist of rare diseases at Oxford Radcliffe Hospital and it was confirmed she was blind.

The disease is a progressive neurological genetic one and she is now wheelchair bound with a mental age of around 10 years.

Despite everything Stephanie is a happy and cheerful and enjoys every minute of her life. She is a joy.

Her life expectancy is late teens/early 20’s.

She particularly loves holidays and short breaks, eating out and playing with her young nephew. She attends a school for the blind and has many friends but rarely received mail which she loves before joining Post Pals as people don’t tend to write to blind people!

Update 4th February 2013

Our beloved daughter, Stephanie, passed away at Basingstoke Hospital in the early hours of Saturday 2nd February. She suffered Juvenile Batten’s Disease and had developed pneumonia. A blessed release!

Update 10th April 2010

We are in the process of moving Stephanie to a specialist residential hospice which deals mainly with Batten’s Disease. It’s time. She needs 24 hour nursing now and spends a lot of her day ‘absent’ from the real world.

I think it would be best if Stephanie were to move into the ‘Moved On’ section after the end of April as I will have to get a job and it will become more difficult to keep on top of post and replies then. The very good Post Pals Steph has made over the years we will of course continue to correspond with, but I won’t have the time to forge new friendships for her. Thanks to Post Pals for everything. It’s been fun.

Update 1st February 2010

Stephanie’s PEG operation was postponed again due to the snow. We are now due to go into Basingstoke Hospital on Tuesday 2nd February for a scan, followed by the operation on the 3rd. Fingers crossed it will be third attempt lucky!

She isn’t all that settled at the moment and seems worried and anxious most of the time. Lots of sleepless nights for mum!

Update 3rd January 2010

Thanks to all Post Pals for all the lovely things sent during November and December for Stephanie’s birthday and Christmas.

We are due to try and put in the PEG again. We are to go into hospital on Wednesday 6th for a scan on her hernia etc and then the PEG may go in on Thursday 7th. Fingers crossed it all goes OK as although we have had a quiet, peaceful Christmas, Stephanie is beginning to gag on taking in food and has bowel problems on almost a daily basis.

Love to all and many thanks for all her presents – again. You are all so wonderful and keep our spirits up!

Update 28th November 2009

Stephanie was unable to have her PEG inserted this month as she has a hernia. Apparently, they can do it but need another team of surgeons, so we shall have to go to hospital again sometime in the near future.

She is stable at the moment, we seem to have the medication as good as we can get it (finally) and she has been able to go back to school to see all her friends, which is an absolute blessing.

She had a reasonable birthday with all the family around and a Disney Princess birthday cake (of course). Thanks to everyone for cards and presents. Let’s hope for a good run up to Christmas!

Update 31st October 2009

Stephanie has been in crisis all summer and we are still struggling to get her complex seizure activity under control. We are going to introduce another anti-convulsant as she is having frightening hallucinations and episodes. She managed to go back to school two weeks before half term but has to have another week off in November to sort out a new wheelchair for her different needs and to have a PEG inserted so that mum can get enough nutrition and medication in as she is finding eating difficult.

Life isn’t a bundle of laughs at the moment. Mobility is none existent and we have to use a hoist – the house is full of equipment! We are waiting for a permanent residential placement now as Steph needs 24 hour nursing care and mum and dad are taking it in turns to sleep in her room. Mum says she needs a holiday!

Update 3rd September 2009

Stephanie is still poorly. The meds are helping a bit but she is still very anxious and worried all the time. She won’t be going back to school immediately and we are seeking a permanent residential placement as she will soon need 24 hour nursing care.

Thanks to everyone for all her presents and cards and good wishes. Sorry we can’t reply to everyone but mum is worn out at the moment. We do appreciate everything though.

Update 9th August 2009

Stephanie has been really poorly. She spent a week in hospital having tests which proved negative but she is suffering mentally and we are trying various anti-psychotics to try and help. She is not well at all.

Update 30th June 2009

We haven’t had much post this month but continuing thanks to all those who remember Stephanie, especially our friend in Israel who never fails to send a parcel every month.

Stephanie has been quite poorly this month. She has had a few seizures and we have had to increase her anti-convulsant drugs. She is also suffering some paranoia and she worries constantly, mainly about her health and toilet issues. Her carer at home broke her elbow so she is out of action for a few weeks too and everything is a bit difficult at the moment, so let’s hope next month is better!

Update 1st June 2009

I took Stephanie for her scan today and am very pleased to report that her kidneys and bladder are functioning normally. Thank goodness for that.

Stephanie’s carer Debbie has broken her arm so we are without help for a bit. Stephanie had a nice trip to Cadbury World though with the Berkshire Blind Society during half term and brought lots of chocolate home! Yum!

So, back to school tomorrow for the summer term and lots more fun!

Update 30th April 2009

Stephanie has been poorly again with a UTI and has to have a kidney scan to see what’s going on. Antibiotics made her very ill but she’s slowly getting better.

Update 31st March 2009

Stephanie’s new carer, Debbie, has been taking her out and about this month and she went to her first Disco at a proper nightclub and drank vodka & cranberry! Dirty stop out!

She breaks up for Easter holidays on Thursday and will be going to see Sponge Bob Square Pants with Debbie at the theatre. We also have a couple of days booked at Douglas House in Oxford and mum and dad are going too, so that will be fun.

We have some new equipment to sort out, like a rise and recline chair, and some other stuff to make life a bit easier as Stephanie’s mobility decreases. All in all she is very well at the moment though – long may it continue!

Update 28th February 2009

Stephanie’s speech is now very difficult to understand and we have to try and get a keyword to make sense of what she is trying to tell us. Mobility is decreasing and we have had lots of new equipment at home to help make life easier so she can retain her independence.

She is looking forward to going to see the X Factor tour on Sunday and next Friday will be back at Wembley for the Kaiser Chiefs concert. It’s a very busy month!

Thanks to everyone for her Valentine’s gifts and cards. She was very proud to take them to school to show her friends.

Update 1st February 2009

Stephanie has had a quiet month. She enjoyed a top to toe pampering day at our local salon though – she had a massage, manicure, pedicure and had her hair done for her Auntie and Uncle’s 25th wedding anniversary party. We are looking forward to christening baby Freya (Stephanie’s niece) on 8th February too.

Steph has recovered well from her UTI and seems in good spirits at the moment.

Update 4th January 2009

We had a family Christmas and went to Brighton for New Year, but Stephanie has a bad UTI at the moment and is very down.

We were at hospital yesterday with her but she’s now on antibiotics and seems to be feeling a little better. Here’s to as healthy 2009 as possible.

Thanks for all your lovely Christmas presents and cards. We really appreciate it. Thank you to everyone who made such a fantastic effort. Stephanie was overwhelmed and very touched by all her lovely cards and gifts.

Update 30th November 2008

Stephanie enjoyed her 18th birthday very much. We had a huge party with a children’s entertainer and ‘retro’ party food and she had a fab time! She had her hair and nails done at the local salon and looked a picture!

Thanks to everyone who sent cards and gifts – there were a lot and we have been very busy as you can imagine, so please forgive us if we haven’t written personally to say thanks, but we DO thank you very, very much.

We are now gearing up for Christmas with the family and Stephanie is busy making cards for her nephews and niece!

Update 8th November 2008

Stephanie has had a very sad month as her beloved Nannie died and we had the funeral on 17th October.

Update 30th September 2008

Stephanie passed TWO GCSE’s in science and food technology – what a clever, clever girl to have an ‘Ology!

We have been busy this month as Stephanie’s Nannie is in hospital and very poorly indeed, so hasn’t been much time for anything else.

Stephanie has been very good and deserves a large treat once mum isn’t so busy!

Update 31st August 2008

Stephanie had a fabulous holiday in Dorset with OTW – thanks to Post Pals! We spent the last week in August in Norfolk at a lovely disabled friendly cottage – lots of lunches out and smashing shopping. Stephanie is gearing up for going back to school now but will be camping in Exmoor on her second week – its holiday, holiday, holiday!

Update 31st July 2008

We went to see Kylie at the 02 arena this month which was a highlight. Stephanie was very happy and sang along to all her favourites. We also bought a Kylie T-shirt which she is proud to wear.

Stephanie has lots going on in the holidays and she has two camping trips planned!

Update 1st July 2008

Stephanie is well at the moment and she’s looking forward to being a bridesmaid for her sister Emma on 2nd August. Her dress is yellow and white with daisies on the top – her grandma made it for her.

We are also going to see Kylie at the end of July at 02 and she can’t wait for that!

Thanks for all your lovely letters, presents and emails. We try to reply to some but can’t manage all.

Update 29th May 2008

Steph has had a bad month with several infections, but she’s picked up a lot and we had a nice holiday in Pagham for four nights in the Children with Special Needs caravan at Church Farm. We had a smashing time, despite the weather!

Update 30th April 2008

Stephanie had a lovely visit to Douglas House hospice in Oxford this month and enjoyed herself very much. She can’t wait to go again!

Thanks for all the lovely presents, cards and letters. We do try to reply to as many as possible, but please don’t be offended if we can’t get to yours.

Update 31st March 2008

Stephanie is a bit wobbly at the moment – we’ve increased her meds again and are hoping for the best. She now sleeps downstairs in her purpose made bedroom with princess bed covers and a super en suite shower room which makes life much easier. She’s still smiling through it all.

Despite all her own problems, Stephanie, with her colleagues from school, will be running (or in Stephanie’s case being pushed around) the Race For Life course at Battersea on May 7th.

Thanks for all our lovely Easter cards and gifts, they are much appreciated. Helen (with ME) we lost your address, silly mum threw the envelope away so we can’t reply to your lovely letter…

Update 29th January 2008

We didn’t have a good start to the year as Stephanie had a seizure last Saturday and we had to call the emergency services. She recovered quite well but we have had to increase her medication and she’s still a bit wobbly. Nothing gets her down for long and she didn’t actually register she’d had the fit at all anyway – just demanded a huge breakfast afterwards because she was so hungry! Keep your fingers crossed that the medication keeps any further fits at bay!

Thanks again to our friend in Israel for a beautiful necklace, much admired by Stephanie’s friends.

Update 3rd January 2008

We had a great Christmas and we spent New Year in Cornwall, but Steph has been ill with a urine infection and is on antibiotics again. 

Thanks to everyone who sent cards and letters. We can’t possibly reply to everyone, but thank you all and we really do appreciate them.

Update 30th October 2007

Stephanie has had a fabulous half term. We went to Alton Towers with Berkshire Blind Society and had a wonderful time. We loved the rides and the scary characters for Halloween and Stephanie had a smashing break. She’s had a bad cold and is on antibiotics but is getting better quickly. The new medication continues to help her mobility and awareness and she is in really good form at the moment.

Update 30th August 2007

Stephanie has had a lovely summer holiday; we took a lovely break to Norfolk last weekend and went to the end of Pier show at Cromer which was fantastic – highly recommended! We also went on a steam train and had lovely meals out but Steph’s favourite time was a trip to a jewellery shop as she loves her jewels nearly as much as her family!

All is good on the medication front; the changes seem to be helping mobility slightly.

Stephanie’s now looking forward to returning to school as she loves her pals there and all the exciting events that take place – you would think it was Hogwarts!

Stephanie also has a new nephew Charlie, born on 27th August – a week late. Stephanie made him the biggest card in the world with all her love inside!

Thank you to Helen, she’s lovely! Also to our anonymous friend in Israel, who never fails to send exciting packages!

Update 30th July 2007

Summer holidays are here and Stephanie is busy with her Disability Challengers group – she was bowling today and has plans for fruit picking, BBQs (weather permitting) and days out at several nice parks. She’s happy and upbeat and we are still waiting for updated medication – its taking a long time to sort out.

Update 2nd July 2007

We’ve just got back from Disneyland Paris which was wet but wild! All had a good time.

We have new research suggesting Stephanie needs a change of medication which may help her mobility and hopefully her speech. Please keep your fingers crossed for us.

Update 4th June 2007

Stephanie has had a lovely half term. We went to see the new Pirates movie and it had audio-description which was marvelous! Most cinemas offer this facility at selected viewings now and it makes such a difference. We also went to the Thriller spectacular at Hammersmith (a celebration of Michael Jackson and the Jackson 5’s music). Stephanie wasn’t really that bothered about going but at the interval said she loved it and did we have the music at home. Unfortunately it’s all on vinyl as we are so old, so we’ll have to buy all the CDs to put on her MP3 player now! Then we went with Berkshire Blind Society  to London Zoo for the day. It’s nice that Stephanie is now back at school, so mum can have a rest!

Stephanie raised £468 plus tax credits for cancer research during May. She did the race for life and was pushed by her PE teacher in Battersea… but walked over the finish line… amazing!

Stephanie received some lovely story tapes received this month. Thanks to everyone.

Update 2nd May 2007

Stephanie had a wonderful day out courtesy of the Willow Foundation last Saturday. We went to London, on the Duck tour, to Hamleys shopping, went to the most wonderful production of the Sound of Music at the Paladium and finally had dinner at the Wolseley.  It was amazing!

Update 31st March 2007

We have increased Steph’s tablets to take effect so she can avoid another fit. Stephanie’s speech is very hard to understand and her mobility is getting very bad. Sorry, think we may be on the ‘home run’ with the disease – life is going to be quite difficult I think from now on!

Our friend in Israel is very good and sends something every month – Stephanie likes it very much and is very grateful. She loved her CD of love songs! Thank you – her friends at school are very jealous!

Update 8th February 2007

Stephanie has had a good January, apart from a cough, cold and earache, par for the course in the weather really! We’ve had a musical month, seeing Kylie and the Pussycat Dolls at Wembley which was fab. She enjoyed both concerts and Wembley Arena is really geared up for wheelchair access. We had amazing seats, if a bit noisy!

We’ve had lots of family get togethers this month because Stephanie’s new nephew arrived on Christmas morning, so we’ve been showing him off and he’s been meeting all the family members.

Thanks for all your cards and wishes.

Update 5th January 2007

We went on holiday to Lanzarote on 28th December for a week and Stephanie had a lovely time splashing in the pool and eating out at some local restaurants. We also had a BBQ on New Year’s Eve – not often you can do that!

Stephanie had an absolutely lovely Christmas with the best present ever – a new nephew arrived Christmas morning and she was able to go to hospital and have a cuddle after lunch.  We all had a fine time and all your lovely presents and cards made it extra special. She was very excited and thanks so much to everyone for all their thoughts and kind gifts.

Update 2nd December 2006

Stephanie is doing quite well at the moment, her walking is ok and she is stable. Stephanie loved her birthday party and looked fantastic in all her new party gear. She was unfortunately very poorly the week after with a bad cold, earache and sore throat but is better now and had a good time at school last week with another birthday cake and party with her friends there. Thanks to everyone for Stephanie’s lovely cards and gifts for her birthday. She really enjoyed them all.

Update 1st November 2006

Stephanie is back at school after an interesting half term. She has bought a lovely dress and jacket for her birthday party on 18th November. We had a lovely day out at Cadbury World with our local blind society too. She’s on good form and very stable at the moment.

Update 1st October 2006

Stephanie will be 16 in November and we are holding a big party for her at a local hotel. She’s really looking forward to half term as we will be shopping for a special outfit to wear (and new shoes, all girls love new shoes). She has saved up to have her hair done for the special day also.

Update 2nd September 2006

Stephanie’s granddad has been very, very poorly so we have been very busy visiting him in hospital but he’s back at home now and much better.

Update 28th May 2006

Stephanie had a lovely holiday in Florida and is missing all her lovely new friends from all over England. Half term is boring as she has post-holiday blues!

Update 28th April 2006

Stephanie is going to Florida from 29th April on a charity holiday with 11 other youngsters! I’m sure she’ll have a great time as she is very well at the moment. She was so excited this morning driving to the airport hotel where they are staying tonight.

Special thank yous to Julie and Elizabeth for all their lovely gifts and to Becky for the story tape.

Update 30th March 2006

The new drug we are trying for Parkinson type symptoms is helping Stephanie to walk a little better and makes her more flexible. Thank God!

We had a lovely holiday in Tenerife this month, following an awful flu bug which left Stephanie very weak. She still has a bad cough but is getting better each day, but she unfortunately missed two weeks at school and missed out on all the activities they organize, including a theatre trip.

We are now on Easter holidays, so post would be most welcome as I know she will become just a bit bored!

Thanks for all your good wishes and please keep writing, it makes Stephanie’s world that much brighter!

We’d like to thank all our friends in Myrtle Beach, America for their kind words and cards. We think it’s amazing that people in that lovely place are praying for us!

Also thanks to the anonymous person in Israel who sends lovely hand made cards.

Update 30th January 2006

Many thanks to everyone for all the very thoughtful presents. Stephanie’s received lots of lovely things and many, many cards, letters and postcards. We reply to some, but can’t possibly reply to all, so thank you and everything received is much appreciated. She is very excited when she comes home from boarding school on a Friday to open all her special things.

We are trying a drug used for Parkinson’s disease at the moment which may help Stephanie’s mobility. We should know in a couple of weeks.

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Simon H

15 June 2012

Story written 2003

Simon who is 6 years old, is suffering from Acute Lymphoblastic Leukaemia. He was diagnosed in June 2002, it was a big shock to the whole family being told what the diagnosis was.

During the first week of June 2002 we were on holiday, on a boat on the Norfolk Broads. Who could have suspected the nightmare we were soon to be experiencing.

Simon had been feeling ill for some time, with constant sore throat, or colds. During our holiday Simon was always dropping off to sleep in the middle of the day, for no apparent reason. We thought it was just being out in the fresh air all of the time. It wasn’t until we saw the little bruises that kept appearing that we thought something was wrong.

On completing the week long holiday we took Simon to see our local GP, who said that, after examining Simon and listening to what we had told him, he was 98% certain that Simon was suffering from some sort of Leukaemia. We felt devastated. We left the surgery in somewhat of a panic.

Going straight form the surgery to Peterborough District Hospital we went to the admissions unit in the children’s’ ward. After taking blood and running a couple of tests it was thought best that we were transferred to the “Children’s Oncology Unit” at Addenbrooks hospital in Cambridge.

There we stayed for a long 6 and a half weeks.

Update March 2007

Simon is now doing extremely well; he is now only seeing the consultant every 2 months. He is gradually catching up at school. He is now beginning to live a normal life again. He also now has a little sister, Lilly, who is about to celebrate her 1st birthday. Simon will be 9 years old in April.

Thank you for all you did for him during his illness and for all the support given by people through the site.

Update April 2004

Simon went into hospital in April with pneumonia, his father, Martin was then admitted with the same thing after collapsing on the ward visiting Simon. Father and son are now on the mend again and Simon is back at school.

Update Summer 2003

Simon has now been having treatment for just over a year and is responding quite well. His treatment has been intense but he has tolerated it very well for someone of his age.

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Samara M

15 June 2012

Story written 2007

Sammie was diagnosed with Cerebral Palsy at the age of 2 when I noticed she wasn’t developing as quickly as other children her age. We thought it was because she was born 8 weeks early.

Sammie eventually learned to walk but walked on her toes and has to wear splints and special shoes. She had an operation at 8 to stretch her leg shorter than the left leg and now wears a built up shoe.

She now has a curved spine and suffers from low self-esteem. Sammie can not run like other children and often feels left behind, but Sammie still has a brilliant sense of humour and laughs at herself.

Her favourite thing to do is craft, especially if there is glitter involved and she loves to make cards for people to cheer them up.

Update 1st July 2009

Due to personal reasons unrelated to Post Pals we are having to “Move on” from Post Pals for the moment. Thank you to everyone who has sent post and supported us.

Update 6th June 2009

We are still fighting to get Sammie a place at special school and although she is suitable we don’t have a place as yet. She is much happier in herself I think and it is just knowing that she will not have to stay at the old school that has really made her happy.

Her foot is all healed now and she can wear shoes without her big straps. She is getting so grown up now.

Thank you to all that took part in the card blog challenge and sent the kids gorgeous cards and gifts, it really does make a huge difference to a child’s day. Thank you also to Lorraine for your lovely letter and for the wii game and the DVD. I am still watching it and know nearly every word. Thank you to Catherine for the sparkly flowers, and thank you to Alexandra for my images – I will be very busy.

Update 30th April 2009

Sammie is still struggling at school and we have made the decision to request that she goes to a special school. I am hoping that here she will get the help that she needs but we still have to fight for a place for her. Obviously she is very apprehensive about changing school yet again but fingers crossed it all goes smoothly. We have a meeting about this in May and hopefully the move won’t be long after this.

Sammie has been back to hospital and she has to go back again as her leg is now turning in and causing her to trip herself up, but she is now wearing proper girly shoes and this has pleased her no end.

I haven’t really updated the blog for the kiddies due to PC problems and loosing lots of the pictures I had taken when it went in for repair, but I wanted you all to know they have been receiving mail and a big thank you to everyone who has sent her mail. I think without it she wouldn’t have got through these last few months, but at least she is a bit happier now and this is all that matters to us really.

Update 10th March 2009

I am so sorry that i have not updated the page for a few months but i didn’t really have any answers and we do now.

Samara has had her pot removed and the operation has been a success. She has to wear a splint on her foot for a while until it heals fully, but she will be able to wear normal shoes and her foot looks really good. What a difference this has made to her.

She has to wear a big pair of trainers at the minute as it is still a bit sore but you cannot really tell that she has had anything done to her.

She had trouble with the walking sticks in the snow and kept getting her foot wet but she is without them now and can walk alone and is enjoying the fact she can get her foot in a shoe. She goes back to see the specialist in April and hopefully he will sign her off.

I just wanted to say a huge thank you to each and every person that has taken the time to send them post and although i didn’t manage to take photos this time, i promise i will from now on. It has just been very hectic and things have finally settled down. You have kept us all going during this very hard time and we really appreciate it, as do the children.

Big hugs to you all x

Update 6th January 2009

Samara had an operation on her foot the same day as Teej had his. She has had some bone removed from next to her big toe. She is able to walk on a special heel they have put over the pot but has to use crutches. She has not left the pot alone though and it is all falling apart – curiosity had got the better of her and she wanted to see what it looked like and now it is just a mess. She will go to the hospital tomorrow to have it seen to, I am hoping that they don’t put another pot on and just strap it up instead.

She has picked out some boots and some sandals for summer already. She has always had problems with her foot and now it looks so much straighter she will be able to wear shoes the same as everyone else’s. She has not gone back to school and will probably go back next week if she gets the all clear tomorrow.

She has been very down about it all and very quiet. She likes her freedom and being able to go where she wants in the house, but this has stopped her from moving from room to room and she is very impatient. She wants it all over and done with and hopes that the bullying will stop because she will be the same as everyone else. No matter how much I tell her she is perfect she doesn’t believe me.

Thank you to everyone who sent her letters, cards and gifts. She had a wonderful Christmas and it made her feel special that people know about her and sent her post. The generosity of people always amazes me, a small letter can change the day of a child and she had plenty of them and plenty of smiles to go with it.

Update 18th December 2008

Sammie’s operation has been cancelled as they had messed up big time. They are now both going in on 22nd December and fingers crossed they will both be home for Christmas.

Sammie will hopefully just stay one night if everything goes ok, but TJ is down for a few days depending on his amount of pain. Sammie is having her toe straightened and her bone shaved and TJ is having both his legs straightened and his tendons released (non weight bearing for a full 6 weeks).

So it looks like it’s going to be fun and games for us all again this Christmas.

Update 1st December 2008

Sammie is still having a tough time at school and is very upset about it. She goes in to hospital for an operation on the 11th December to straighten her foot up and is very excited about this. She has picked out some new boots already and some sandals for summer! As her mum I am the more nervous one I think!

The bullying at school has made me wonder if I should take her out of school and home school her, but then she wouldn’t get the social skills she needs. The other alternative is to put her in a different school, but this is her third high school and I think we just have to keep her there and try our best to help.

The amount of post she has received this last month has made her feel really loved and she loves reading about what you are all up to. Her blog is getting full of pictures now and she keeps going back to look at it and still cannot believe that people have taken time to write to her.

Post pals has had such a huge impact on Sammie, she is normally brushed to one side by everyone and for her to know that people care about her makes her feel special. A simple letter or postcard can change her day and brighten her world no end. Post Pals has been a God send, thank you to everyone.

Update 1st November 2008

Sammie has been having a tough time of it lately, she doesn’t understand why she has to grow up and why her body is changing and is finding it very hard and spends a lot of time in her room at the minute.

Sammie is also due to go in to hospital for an operation to correct her foot and she is surprisingly looking forwards to this. She will be getting some new boots and shoes soon as the foot is too bent to wear nice shoes at the moment and she has already picked out what she wants.

Sammie has received some lovely things through the post these last few months and a lady from Holland, Nicolette, has made her a gorgeous quilt with kitties on it and it is pink to match her room.

I have set up a blog for all the children so that people can see how happy they are when they receive post and there is thank you’s on for everyone. She loves the idea of being able to put pictures of herself and her brother and sister on the blog and knowing that people can see her. The link is listed above with Samara’s details.

Thank you to everyone who takes the time to write and send her post as she smiles and feels really special with each one she opens.

Update 10th September 2008

Samara has now gone back to school and this term she has a one to one and has settled in much better.

She has an appointment for a scan at the end of the month of her tummy. This means more poking and prodding, but it is for the geneticist. We still have no answers but at least they are looking.

Thanks this month to Becky and Tess.

Update 7th August 2008

Samara has had a good month in herself, she seems to be building up her self esteem and her confidence is coming back.

We still have not heard anything from the doctors about her genes so we still don’t know, but they say no news is good news and we are keeping our fingers crossed it wont be to long now.

Sammie would like to thank the person who sent the hama beads, she was very pleased with those. She was so excited getting lots of post she cannot remember who sent them, so I am sorry about that but if you are reading this, she loved them as they glow in the dark.

Update 1st July 2008

Sammie has had a busy few months. She has been to see a special doctor who just deals with genes and she has been prodded and poked, had x-rays, bloods taken, you name it she has had it. We are still no better off with finding out any answers but it all takes time and as they say no news is good news…

Sammie has also been to see the bone specialist who wants to shave the bones on her foot a bit so she can get a pair of shoes on. Her toes are curling out the wrong way and she is in a bit of pain with them. We have agreed to this and she is on the waiting list and I’m hoping she will have it done while they are on holidays as I don’t want her missing too much of school. Funnily enough she is looking forward to it, as she wants some ankle strap sandals because she has never had any.

Sammie has put on some weight and this is now a big issue with her so we have an appointment with a dietician to see if there is anything we can do to encourage her to eat a bit more. I have hidden the scales so she doesn’t keep weighing herself, she just wants to put weight on and in her words “be normal” but I have told her she is gorgeous as she is.

Sammie is still having a tough time at school and doesn’t seem to fit in no matter how hard she tries, but she has decided that what other people think doesn’t matter and she is trying her hardest at everything now. We held her annual review here last week and her scores are going up slightly so that’s a plus for her and she now does her P.E. lesson without a helper and is holding her own.

Sammie has started to get more creative and has been using fimo. It is similar to modelling clay but you bake it when it’s done. She also loves hama beads – they get everywhere but she makes some beautiful things and to her, crafting is the best thing in the world.

Thank you to everyone for helping to make her smile. Life can be very hard for her but just knowing that people care makes a very big difference.

Can I just put a little thank you here for Shaleise too? She is really pleased with all her letters, cards and gifts, and she has asked me to thank everyone.

Since Sammie has been on Post Pals she has had so much post and it has helped her confidence and made her a totally different girl. No matter how bad her day is she will come home and sit and read her letters and cards. She has got a massive box full now and sits reading them all the time. She is even getting emails and one in particular has made her day so thank you Julia and Sophie. Although she can’t reply by email she will write, she doesn’t feel so alone now.

Samara has had so many hand made cards this month we have had to put a string up to hold them all, and they are all beautiful, thank you.

Samara has had 3 lovely letters and although it takes her a while to finish her own letter she is going to write back to everyone who has written to her.

Thank you so much to Karen who has sent her a watch, she has tried very hard to tell the time and is almost there. What a lovely thing for you to do.

Update 15th April 2008

Samara has been having a really bad time, so sorry for not updating this page for a while, but I have been focusing all my attention on her and she seems to have finally turned a corner. She has been happy, smiling and cheeky, back to her normal self and I have to say it is such a relief.

We have decided not to let her have a big operation as there was a good chance she would be left unable to walk, so we really didn’t want to take the chance and go through with it. When she is older, if she still needs it doing, it will be her choice.

I wanted to thank each and every single person that have sent her letters, gifts and postcards these last few months while she has been down. There is too many to name here, but I just wanted you all to know she is very grateful for it and her bedroom is now full of post and she sits reading it everyday. She even got a cross stitch kit which she was over the moon with.

She joked yesterday that she could wallpaper her room with all her cards and letters now and that it has made her so happy. When you think back to how upset she was a few months ago I never thought she would be back to her normal self and post pals have helped a great deal with this, by showing her that people really do care and are genuine.

Sammie is finally happy at school and the bullying seems to have stopped. We are trying to teach her to tell the time now and she is so funny with it – she said I want a digital watch then I don’t have to bother. She also had some more good news, her film has won another award and she won another amount of money which again she has put in her bank account for when she is older. She wants to be a vet’s nurse and is taking a real interest in animals at the minute.

Thank you once again.

Update 30th January 2008

Sammie has had a brain MRI and stayed awake for it, she didn’t like it very much but at least we will get some answers. She has been this morning to see the specialist and he wants to break both her hips and reset them with pins in, but it will mean almost a year of her legs and then it may not even work. Sammie would love to have this done as she thinks she will be normal afterwards, but we have some serious thinking to do before we reach any decision.

Sammie’s 12 year old best friend has died and she went to the funeral. I felt she should go to get some kind of closure and she said it was nice hearing about her growing up, but she has been very upset and asked a lot of questions. I think I have explained it the best I can, but she is still very upset about her friend and says she will never forget her and I have encouraged her to start witting her feelings down.

Fingers crossed that next month is a happier one for all of us.Due to the unhappy time Sammie has had lately, this site has been a Godsend at cheering her up and making her smile, so thank you to everyone that has taken a moment of their time to do this; it really does make a huge difference.

Update 3rd January 2008

Sammie started the month sad because she lost her Nanna, but with the excitement up to Christmas she soon got over it. She has had the best Christmas ever and was showered with gifts and cards and was so impressed that, in her words, special people had bothered to send her a gift and a Christmas card.

She has met her aunty and has been to stay at her house and she was telling her aunty how special people had sent her cards and gifts and said they must be people that are angels!

She got so excited on Christmas morning she didn’t feel well at all. Her pile of presents was huge and she was still opening gifts at 1pm. She said she took her time as she wanted to appreciate each and every thing she got.

Sammie wants to thank each and every person that sent her a Christmas gift. She had a really good time and loved being part of Post Pals this Christmas.

As her mum, i have been overwhelmed by the kindness and generosity of people we do not even know. Sammie thought she was alone in her disability and has really enjoyed the last year of receiving letters and gifts from people and this has helped her self esteem no end, thank you. Thank you to everyone.

Update 2nd December 2007

Sammie has had some good news. The animation she made won a children’s BAFTA and she has also won another cash prize. The school has asked if we would mind them showing it and putting it in their newsletter, so we said yes. If it highlights disability, I don’t mind where it goes.

Update 30th October 2007

Samara has had an imp month – which means she has spent most of it in her room having time out! She is growing up so fast and has been so cheeky. Whilst most mums would be annoyed at the change in behaviour, to me this proves that she is happy, confident and back on track. She has even had a detention…

Her health has been really good and she has also put on more weight, so things are on the up for our little imp!

Thank you everyone who sends Samara post, it has really changed her life getting letters and cards from people she doesn’t know and some from far away. It has restored my faith in people.

Update 10th October 2007

Sammie is learning to play the oboe. It’s meant to be a nice sound, but it’s awful! The parrot even joins in with her!

Sammie has been to see the specialist again. She will have to go for a brain scan and to see a surgeon as her feet are curving, so it’s looking more and more likely that she will need yet another operation.

The film that Sammie made has been nominated for a BAFTA award so she was really excited at the thought it might win! Fingers crossed it will! Unfortunately we couldn’t make it all the way to London as there were no trains home when it finished, but she doesn’t mind.

She is really enjoying her new school and they are so good with her and are always phoning me up and asking my opinion. She has even made some friends and is so happy, the difference in her this month is amazing…

Thanks to Becky for writing to Sammie and thanks to Julie whose cards always make her smile.

Update 17th August 2007

Sammie is going from strength to strength and has put on some more weight now, so things are looking good. She has now been allowed to take Kei-Kei to agility and help train her up and she is even trying with Foggy now (Foggy is a dog we are training up for Canine Partners who train dogs up to work with disabled people). Her behaviour is getting quite impish again so I know she is back to herself and the Sammie we all love and know…

We are facing yet another battle this time for a dropped kerb but we keep going and Sammie now understands we do this for her not because of her.Sammie also had her eyes re tested and needs some new glasses, so she was happy too…

Thank you to Becky who always makes Sammie smile and a thank you to Helen for the crafting things she sent Sammie, she had a great time doing them.

Update 1st July 2007

Samara has now been removed from school and is getting home schooling until we can find another school to taker her. She was suffering from bullying and seemed to be relieved that it is all over now…

For the first time in months she is now eating and sleeping so in my heart I know we have done the right thing for her, it’s just a shame it had to come to this…

Samara is a very happy little girl at the minute, and we had a letter from London to say the animation she made “The Wrong Trainers” has just won four more awards making that five in total. She got a cash prize; bless her she told me she was saving it in her bank account for college…

Samara has had lots of letters and its great knowing that she isn’t alone and people from all over the world are witting to her.

Update 26th June 2007

Sammie is having a bad time at the moment and is very upset, but I am trying hard to make her feel better. She is going to be home schooled for a while.

Thank you to Sue for emailing me and Sammie as her kind words were really nice. Sammie appreciates every email she receives, so thank you to all the people who have taken time to email her – it makes her feel really special.

Update 10th May 2007

Sammie had an operation yesterday to remove adult teeth from her bones in her mouth. She was in at 7.30am and didn’t get home until 8pm. Her face was very swollen like a hamster and she is very sore. She is in her room chilling out but is bored…

The specialist phoned me up and told me Sammie’s results from her MRI scan had come back ok, so she has got the all clear for another 2 years. This is brilliant news because it means she isn’t getting any worse.

Thank you to our friend Becky who is keeping Sammie’s hopes up. Again, I think this service is brilliant and to know people out there really care is amazing, thank you for your help in making my child feel extra special.

Update 7th April 2007

Sammie went for an MRI scan last week. She was very nervous and they offered to make her sleep while they did it and she told the nurse that she was brave enough to do it awake! She did and it went really well and we should have the results next month.

I was cutting my hair for Canine Partners (a charity that trains dogs up to work with disabled people) as I was getting sponsored for it and Sammie decided she would have her hair cut too. This was a big decision for her and I didn’t think she would do it, but she even shamed her big sister Liddie in to doing it. We cut off 8 inches of Sammie’s hair and Liddie cut of 7 inches. We raised a total of £174 and we are sending the hair to Little Princesses, and she looks so gorgeous with shorter hair…

Post Pals has made such a huge difference to her. She was so tired of just getting appointments through the post and it does make her smile and feel important. Thank you for her birthday cards and gifts and a big thank you to Becky Bulter who has been witting to Sammie and sent her a poem book, she loves it… The sparkly stickers were also a big hit, and thanks to Julie who made an Easter card for them all with chocolate on. They don’t want to eat them – they are that nice!

Continue reading...

Sam M

15 June 2012

Story written 2006

After months of hospital stays, EEG’s, MRI scans, and blood tests, we were given the diagnosis of Temporal Lobe Epilepsy, caused by a lesion, probably a cyst, in his left temporal lobe.

Sam continues to have up to 20 seizures in any one day, causing him to feel tired and dazed for much of the time. His current medication is not having any effect on the episodes.

We had our first appointment with the neurologist at Great Ormond Street on Tuesday, and he has suggested a change of medication, a further MRI, and an overnight, with a view to possible surgery to remove the cyst, which is scary, but I think we would consider anything which may help at the moment.

Sam attends a mainstream playgroup and a special needs playgroup at the moment and is doing so well that in September he will be beginning at a nursery 5 afternoons a week, supported by a 1:1 teaching assistant due to his epilepsy and personal care.

Sam is such a loving and loveable little boy, full of cuddles and his is so happy, but he can also be a monkey, full of mischief and giggles. He is loved to bits by his brother and sister, and they worry a lot about Sam.

Sam has Complex Partial Seizures, lasting around 1 minute, which are very frightening to watch and we have not got used to seeing Sam experience them. He looks terrified during a seizure, but copes amazingly well, and seems to recover quickly from a seizure.

We are hoping that over the next year, Sam will become seizure free, one way or another, and we look forward to that day. Until then we are taking each day as it comes. Epilepsy is so unpredictable, it is hard to make plans for the future, but giving Sam the best chance we can and seeing Sam happy here makes it all worth waiting for.

Update 29th January 2011

Sam is having an up and down month. He loved Christmas but found it very stressful and it was his 8th birthday on 1st January – thank you so much for all the gorgeous presents and post he received, we were blown away by your generosity again!!! It is not ideal for someone with epilepsy and autism to have a birthday so close to Christmas, its too much too close together, so we decided next year we will save his birthday until a couple of weeks later so its better for him and he has time to look forward to it.

Sam is getting by day to day and making good progress with his speech and communication, but he gets really frustrated sometimes and lashes out which we can understand, but it is hard to cope with when he shouts and screams constantly. Sam still wears a nappy in bed which he absolutely loathes and he gets so angry each night. We’re trying to think of ways to encourage his dryness, but apart from limiting his juice we are stuck!!! And the sleeping isn’t great at the moment, I think we need to look at the meds again soon for his sleep, and the others too as he has grown so much they may all need the dosage changed.

Anyway hope you all had the best Christmas and New Year possible and big hugs to everyone who has posted anything our way, it is much appreciated, they still get so excited!! Take care xx

Update 30th October 2010

Sam is coping OK with everything so far this winter. The winter is generally a hard time for him when he becomes a bit down and depressed, as he loves getting out and about in the fresh air, and as the nights draw in he finds it hard to cope. Last year he got measles which was a terrible ordeal for us all to face and he did not completely recover until April. This still haunts him and he often says ‘measles is gone now, have I got spots now or are they gone?’.

He is not sleeping great and finds it hard to drop off, but he is frequently awake until after midnight, which is wearing on us all. Sam’s reflux seems to have returned with a vengeance and occurring daily. His seizures are still under control but could be occurring, manifesting themselves in a different way. We are due to have another appointment at GOSH in the New Year.

Many many thanks to all who have sent Halloween gifts, the children have been overwhelmed with your kindness. Thanks to Lauren, S.R Gilligan, and many others. Sophie and Sam loved the bags and cards and even Joe was pleased with his Halloween gifts. We have been making the Post Pals Christmas cards pictures and enjoyed doing them a lot.

Happy Halloween to you all and take care xxx

Update 2nd October 2010

Sam has had a great summer and is enjoying being back at school. This is usually a very hard time of year for Sam, and he begins to go downhill in both his health and behaviour during the winter months, so we are all keeping a close eye on him to make sure we notice if he begins to show signs this is beginning to happen. We are not sure why this happens – last year he got measles in December and was unwell for 2 months beforehand too, in fact he did not get back to normal until the April following this. He seems very depressed in winter as the weather gets colder, and he can’t run about as much outside due to the bad weather.

At the moment he is fine though, we had results back from last EEG in May, and it seems the seizures are under control at present, which is great news.

So many thank you’s for all the wonderful post we have been getting, we are so grateful. We have had Legoland tickets from Post Pals, and letters and gifts from across the globe. Some great balloons arrived in the post yesterday, the children love opening the post and on hard days it really brings a smile to their faces.

Times are hard here and everywhere else and there’s no spare money for treats what with Christmas coming, so we really appreciate your kindness.

Sam is really desperate to go on a plane and we are lucky enough to have a friend who has arranged for him and I to go on a short flight in October, so we are really excited!! Sophie is loving Twilight at the moment, and Sam is into Toy Story, he loves the RC car and Woody goes everywhere with him – he has lost his boots and his hand and he is still Sam’s favourite!!

Hope all Pals are doing as well as possible at the moment and thank you again.

Update 10th June 2010

Sam and Joe and Sophie have been getting lots of super post from all over the world recently, with some amazing gifts and cards from Marjolijn from the Netherlands. Thank you SO much. The children are over the moon with their cards and presents, Sophie loves to hear about your guinea pigs and Joe was thrilled with his World Cup book. Sam loves his instruments too!!

They also got some gorgeous post and gifts from Karen Standy from Bedfordshire. Thank you so much, Sam loved his musical toys and Sophie loved the photos of your lovely pets.

Sam got a postcard from Darwen, Australia, from Andrea Holmes-Chadwell and also a gorgeous letter from Sean in Ireland which he made himself. Thank you for all your wonderful kindness, we really appreciate it.

Sam is becoming easier to handle, but his autism makes it hard for him to have compassion for other people, but he is very loving at times. He struggles with his emotions and quite often is very very happy or very very angry for no apparent reason.

Sam has been in Great Ormond Street for 3 days to have a 48 hour EEG and other tests to see if he is still having seizures. He hated being attached to a machine with wires glued to his head for 2 days and nights, but he really tried to be good. He still has his head covered in glue 3 weeks later so I’m going to have his hair cut short! He hates his hair being brushed now as it hurts him so much. We are awaiting an appointment to get the results of the tests.

Sam also has to have a blood test next week to check his levels as he is on risperidone, I am dreading this as Sam hates needles.

Sophie is doing really well and has her first ice skating competition on 5th July, and her grade 1 piano and grade 2 trumpet on 6th July. So she is a busy girl at the moment. And it’s her 10th birthday on Sunday so she is very excited too!!

Joe is looking forward to the World Cup and has planned his life around England’s games!!

We are going to the Starlight Wish Party on 29th June; we are lucky to be invited and can’t wait.

We also hope to come to the Post Pals party on 26th, and hope to meet lots of other Pals there.

Thank you to Viks, Kate, and the team for all your hard work, it means a lot to us.

Update 8th March 2010

Sam has had a good February on the whole and finally seems to be recovering from the after effects of the measles. He is tolerating more music and songs, and is not completely distraught every time anyone sings a song or turns the radio on.

He is slowly getting back to the way he was 3 months ago, enjoying himself playing on the computer and with his new Scooby Doo House toy.

We have had a couple of appointments at GOSH, the first to see a clinical neuro psychologist, who assessed him for 4 hours and put his ability at 3 years ten months for one test, and up to 5 years 10 months for another, with the rest falling around the 4 years 8 months level. This is really positive as previously Sam was assessed at the level of a 2 – 3 years old on these tests. He wasn’t too happy sitting for these tests and I think he could probably have done better if he was more cooperative!!

On another visit Sam had an MRI Scan to see if there was any change in his brain following his temporal lobe resection which had caused his recent change in temperament. The results were clear with no swelling, regrowth, or pressure apparent, so that is good news.

That means the reason for Sam’s recent downturn is probably related to the measles, autism, epilepsy or any of the above. He has been referred for an overnight EEG to assess if there is any underlying electrical activity which could be causing Sam some discomfort. This has come through for the 18th March, so we will see what happens then. We are slowly ruling out each possible factor, and trying to discover the reasons behind why Sam is such a whirlwind of emotions at the moment.

As it happens, Sam seems to be finally getting better on his own, though we don’t know why? He is being really loving and affectionate, and I feel we have the connection back that was lost while we were all trying to cope with measles and all its side effects.

Many many thanks to everyone for all the lovely post the children received recently. Joe got a book voucher all the way from Houston, Texas, from Mary Johnson. Sophie has been given a gorgeous necklace making machine for Valentines Day, and a paint your own jewellery box. Sam has got a fab Doctor Who book, handmade card and bookmark from Alison.

We are so grateful for all your kindness; the children get such joy from Post Pals. We have also had many cards and postcards sending love and kind thoughts – many thanks to everyone who has thought of us.

A lot of pals are heading through hard times at the moment and our thoughts are with them and their families.

Update 5th January 2010

Sorry to say that Sam has not had a very good Christmas at all as he came down with measles on 19th December. This was after being really sad and angry for most of December (which was obviously when the measles was starting). He had a horrible itchy rash, ear infection, conjunctivitis, fever, sleeplessness, and was really angry and screaming a lot as he didn’t understand why he felt so ill. It was a quiet Christmas for us, as we didn’t leave the house for 2 whole weeks.

Sam only started to get better on 1st January. He finally started to sleep a little, but he is still very up and down emotionally, easily upset and cannot stand any loud music/songs. We can see he is worse because of the autism, and not being able to understand why things are happening.

He has, in general, not coped well with winter this year. He is struggling to cope with school and the demands placed on him. We have got an appointment in February at GOSH, to arrange an MRI scan to check there is no change in his temporal lobe, new growths or pressure etc, so we can rule that out, and try to understand him better and why his emotions are such a roller coaster.

The doctor recommended a trial of Risperidone to calm his temper, so we are trying that at the moment. He has also been prescribed Chloral Hydrate for those nights when he awakes at 1am and will not go back to sleep, although thankfully these are not the norm as they were while he was ill over Christmas.

Sam’s birthday was on 1st January and we kept things quiet. We just went for lunch at the Harvester, followed by a long walk in the forest, so Sam could get some fresh air and exercise.

He did cope well with the day and opened some lovely post – many thanks to everyone who sent both Christmas and birthday gifts to Sam, and Joe and Sophie. The knowledge that people all over the world are thinking of us really helped this Christmas, as it is probably the hardest one we have faced.

Joe and Sophie did not get to go out and do a lot, as we were waiting to see if they were going to come down with the measles, but thankfully they didn’t get it and they are all back at school now.

We wish all the Pals, volunteers and families, a very Happy and Healthy New Year, and thank you again to all the kind people who sent post for the children and the Schwauer family from the USA. It was lovely to see them open the parcels and cards.

Update 28th November 2009

Thank you to all of you who have sent post this last month, it is much appreciated. I am keeping the presents for Christmas morning (if I can!) but Sam has loved opening the craft pack he received and we are having a crafty evening in the week, making some cards and decorations.

Today we went to the Winter Wonderland in Hyde Park, and saw the circus, did ice skating and lots of rides. Sam lasted well, and apart from a couple of small moments he held himself together, even going on some quite hair-raising rides and a bungee jump!! He usually gets a bit unsure and nervous in crowd situations and with lots of noise, but today he coped with the tube and taxi without too much fuss.

I told Sam that Father Christmas can see him through the burglar alarm sensors, and see if he is being good, which made him stand there staring at the corner of the room for 10 minutes, talking to ‘Father Christmas’, and it works if I remind him and takes his mind off his temper sometimes – shame it won’t work after Christmas!!

Merry Christmas to all, hope you have the best Christmas possible and a peaceful New Year too.

Update 1st November 2009

Sam has had some lovely post this month, with lots of emails from all over the world, some great postcards, including one all the way from Japan!! He’s had some super cards too. He loves opening the card and he gives it to me and says ‘What do this say?’.

Thank you so much for the wonderful Chinese paper lanterns, we set them off last night and they looked stunning, floating away slowly into the night. We could see them for absolute miles and miles, I wonder where they ended up? Thank you too for the Snowman book and CD, another of Sam’s obsessions, I know that book off by heart now!

Sam has stopped wearing nappies at night time, which is a huge step for him, not too many accidents either! Well done Sammy!

He went to the opticians yesterday and we were laughing because when he was looking at the chart, he had to name the pictures and he said ”House, Car, Flower, Plane”, then he saw a kettle, and he said ‘Nice cup of tea, Car,” etc, the optician wasn’t amused when we laughed, but that’s Sam all over, doing what he can to communicate, and he usually makes himself understood in the end, even if he’s not using normal words!

Sam had his first trick or treating experience last night and we think he really enjoyed it, dressed as a pirate.

Hope all the other Pals are doing as well as possible, this is a hard time of year, and we are thinking of all of those facing hard times.

Update 29th September 2009

Sam has received lots of postcards and notes from the US recently, and a big thank you to Kim Craft who sent Sam a great Fireman Sam Sticker Book, he has had a lot of fun doing the stickers and sends a big hug. Also, thank you to Margret from the USA for her lovely postcards for Joe, Sophie and Sam.

Sam has settled in well to his new class at school, and he is amazing us with his ‘writing’ which is random letters jumbled together on a page, to which he says ‘What that say?’ He is really keen to get reading and writing and the speech therapists etc are saying he is functioning at the level of a 4 year old, so he is doing really well, and has made good progress.

Most importantly Sam is having a happy time at the moment, with no major problems. He still uses Melatonin at bedtime to help him drift off to sleep, and he is still the most stubborn boy in the world, but there are definite signs he is maturing, and becoming a little less like a terrible two year old!

Sam’s autism is the main issue at the moment and this is something he will, and we all will have to learn to live with, but he is a healthy little boy at the moment, free of seizures, and long may it last.

Thanks to all the lovely people sending postie to all the Pals, you are making someone smile every time you send something, which is an amazing thing when times are hard.

Update 18th September 2009

Well Sam went up to the next class at school in September and he seems to have settled in well. He says ‘I love my teacher!’. He still needs Melatonin to help him get off to sleep, which is the only thing to have worked, and we are so grateful, as it means we have some normality with the other children.

When Sam didn’t go to bed our whole evenings were taken up with him. One of us had to lie down on the bed with him, sometimes for 3-4 hours, and then he would wake up again by 3-4am, and it was really hard. Now he is asleep by 8 or 8.30 pm and we have time to be with the other two for an hour or two before they go to bed, which is lovely. Sam is still often awake by 5am but you can cope with anything if you’ve had a few hours interrupted sleep!!

Sam has really made progress in many areas. His speech is coming along well and his level of comprehension is becoming better. He is able to understand so much more now. I feel we are so lucky to be able to say this, as a couple of years ago things were so up in the air and we didn’t know what the next day would bring, if he would be having 20 seizures or none overnight, and if he would ever be able to use a toilet or not.

Sam’s autism was diagnosed last year and he has many typical autistic tendencies, such as flapping his hands and bouncing, and he cannot cope in many social situations. He started Beavers 2 weeks ago, and he is settling in slowly, but after half an hour he says ‘Can we go home now?’ so we are letting him do it at his own pace as he is not used to being in a mainstream group, and I feel he is able to do this, in his own time.

We have tried a couple of medications such as Straterra and other ADHD drugs but they didn’t have a positive effect and made him depressed. I am glad we can now rule these out and work with Sam to help him control his own feelings and behaviour.

Christmas is around the corner and I am sure he will get lots out of it this year.

Sending love and hugs to all other Pals and families, some of whom are facing hard times, as we have done in the past. Thinking of you all with love xxxxx

Update 30th May 2009

Sam has been very up and down this last couple of months with his temper being very erratic and he is being exremely loud and shouty! The teachers think this has a lot to do with his brain surgery and the after effects of actually going into his brain, along with his autism and frustration from not being able to communicate as effectively as he wants to. We had a behaviour specialist in yesterday who said she thought he was capable of doing really well, if we can get past the frustration and all the bad tempers. He spent the hour telling her ‘Go home now! I finished now!!’ which I can understand as he is sick of being pulled around and told what to do, but he did sit nicely in short bursts and she thought he did well. We are hoping she will be able to go into school on a weekly basis to offer help and build a relationship with him. We’ll try anything to get throught to him!

His sleeping pattern has been awful of late, he has been waking up at 1 or 2am and ready to face the day. We just can’t keep going like this and I am seeing the school doctor on Wednesday to try and get something to help him through the night, as we are all too tired and ratty to cope with anything!

Sam is still just Sam though with his funny cheeky personality and (most of the time) we wouldn’t change him at all! He is glad the weather has turned at last and is loving the garden and mum’s swimming pool. Last year he wouldnt go in it, but this year he loves it. Maybe that’s autism for you, or maybe that’s just kids for you.

Update 1st March 2009

Sam has had a good month, with lots of cards from Post Pals all over the world, many thanks to you all for sending your best wishes to us, we appreciate it loads.

Sam has become a lot more vocal in his wants now, saying “I want go there!” or “I want play that!” so it is great to see his personality developing, but also hard as he is so determined to get his own way, and we have to spend a lot of time explaining things in a simple way he can understand.

Sophie broke her arm for the third time last Monday and we are beginning to think she could have a problem such as Hypermobility. Poor thing had to spend two nights in hospital and now has a pin in her arm. We are seeing the orthopaedic surgeon tomorrow and will have to pursue this, as things are not looking good – she broke it tripping over while getting off a bed?? All her breaks have been while falling over, once while falling from an armchair onto a carpet! She would love some extra smiles as she is finding it hard being a bit left out, as we have to keep Sam busy.

Take care and sending all the other Pals our love xx

Update 1st February 2009

We had a busy Christmas and we send so many thanks to all the Christmas elves and everyone who sent Christmas post to the children as they really had fun opening the presents and cards.

Sam had his 6th birthday too and we went to the ball pit with a few friends and cousins which he loved. He got some great birthday post too, big hugs to you all!

Sam began a trial of the medication Equasym just after Christmas, which was recommended to us by two different Great Ormond Street Departments. The drug is a reuptake inhibitor, which is supposed to slow down Sam’s reaction time by making the messages to the brain take longer to get there. For most children with autism / ADHD, this is supposed to have the effect of improving concentration and helping to get more out of school. However in Sam’s case the medication just made him very sad. He went from being bubbly and extremely bouncy to being unresponsive and depressed whenever he was given the medication. His teachers at school noted he did a lot more flapping and his processing delay was far worse. We gave up after 5 days and he is back to his usual self, which is great to see. We thought it was worth a try to see if Sam could be helped to maintain his concentration at school, and to minimise his mood swings, but this is not the case.

We have all got this rotten cold and cough going around, and we are having a day indoors today, with Sam watching Ratatouille, Wall-e, and playing on his V Smile all day. Joe and Sophie are a bit unimpressed by this but if Sam is happy then we all have a bit of peace. Joe wants to get the wii out soon, so I am taking Sam upstairs to read some books.

Update 2nd January 2009

We had a lovely, busy Christmas, but we have all succumbed to the coughs and colds going around, so we haven’t been up to much else! Sam enjoyed opening his presents and got some super Christmas postie and i have sent some pictures for the gallery. Sam’s current favourite DVD is The Snowman, and he was overjoyed to get the book of the DVD! Joe and Sophie also got some lovely postie, Sophie got some lovely art stuff and girlie bits, and Joe got a great wrestling calendar to name a couple of things. Thank you so much to everyone who sent post to all the children!

Sam’s birthday was yesterday so he had yet more presents and cards, and some lovely postie including lots of cards and a lovely soft Wall-e toy from Julie Barrett, which he slept with last night!

Sam finds the holidays with no routine a stressful time, and as we have all been unwell and unable to get out, it has been harder for him to cope, so we will all be glad when term starts again.

Sam was officially diagnosed with autism and ADHD last month, and we have started a trial of Equasym to see if it helps his attention span, but this was stopped due to having a bad cough and cold, but we will be trying it again once he is better.

I would like to wish all the Post Pals staff, volunteers, helpers and families, a Happy and Healthy 2009, thank you so much to you all for including us in your thoughts.

Update 23rd October 2008

Sam enjoyed his summer holidays, even though it was hard for him to understand why there was no school, and even harder for us to find ways of entertaining him! He attended the summer play scheme run by the council which he loved doing. This was two days a week, which gave us and him some much needed time off to regroup!

We went away to Somerset for a week and it rained every day, but we had fun. For some reason Sam refused to go swimming, we cannot explain it, his autistic side is becoming more and more apparent and he feels really unsure in unfamiliar situations which can be hard for all of us. For example, we are taking the children out for a meal on Boxing Day, and in order for this to go smoothly we are having to do a couple of trial runs so he is familiar with the restaurant and is happy to be there on the day.

He remains seizure free at the moment, although there are no guarantees this will not change. He still has reflux and is frequently sick, vomiting up everything in his stomach, something he seems to have no control over. We are used to this and just get on with it, even Sam just says ‘Finished now-sick gone’.

We have been referred to a specialist to have his autism officially diagnosed and are waiting to hear from them. This is an important step for Sam, who may need this diagnosis one day to access services.

Went to see the neurologist at Great Ormond Street on Tuesday and had a positive meeting, discovering that the EEG Sam had in the summer was ‘normal’, and the MRI Scan showed that the site of his temporal lobe resection has shrunk, and the brain is functioning normally at present, so this was really good news.

Sam is still visiting other departments at GOSH and has his next appointment for developmental Epilepsy and Speech Therapy on November 3rd.

Thank you so much for the cards and little gifts we have received in the post for Sam, Sophie and Joe. We really appreciate it and Sam gets so excited now, he has reached a stage in his awareness where he anticipates what is inside the present and rips the paper off really fast.

Before now it was a struggle, he did not grasp the concept that there was a gift inside for him, he was in another world a lot of the time. It took all day to get him to open a present himself, but now I can’t wait for Christmas, he will be such fun (fingers crossed) on Christmas Day and will be able to join in a lot more. However, there is always the fear that it will all be too much for him and he will not cope with it, so we will have to try and keep it calm for him.

Update 29th May 2008

Sam is coming on amazingly well, and on 1st June it will be 1 year exactly since he had his brain surgery.

He has made amazing progress in the last year. His speech has improved and his vocabulary has increased, but the most important thing is he has had no seizures in the last year. We are so grateful to the surgeons and staff at Great Ormond Street, as without their expertise Sam would be having a very different life to the one he is enjoying today.

Sam still has major learning delays and communication problems, he has trouble pronouncing words and suffers from a bad stutter, but he is progressing every day. Sam’s behaviour is very up and down and he gets very frustrated with his lack of communication skills and he does like getting his own way! He is exhibiting some autistic behaviour such as hand-flapping and obsessive behaviours with certain objects, which is very frustrating for all of us.

However, Sam is very funny with a fantastic sense of humour, who makes us appreciate all the little things in life, and he is a huge part of our family life. We wouldn’t have him any other way (except at bedtime!)

I would like to send big thank you’s to Berenice, Callum and Emma, Fiona, Helen F, Chloe G, Karen (Sami), Linda B, and Julie Barrett, for all the homemade cards, gifts and kind thoughts you have sent our way in the past month, they are really appreciated.

We are thinking of all the pals who are struggling at the moment and remembering this time last year, when we too were living minute by minute, hoping for a miracle. Sam is living proof that miracles can happen, so keep strong if you are going through hard times.

Update 4th April 2008

Sam is doing fine this month. He still has a bad stammer, but is coping well and has good and bad days. His behaviour is up and down, but his sleeping is better now he is on melatonin to help him drift off to sleep. He is looking forward to going back to school and wakes up each morning saying ‘I go school today?’ Bless him, let’s hope it lasts!

We have had a lot of post and special thanks go to Jade Boyd, who sent really thoughtful gifts to all the children – THANKYOU! To Kate Dee for lovely cards and to Bereneice, Callum and Emma for great postcards from Cornwall. Also to Karen and Sami for a lovely homemade card. Lastly, thank you to the lady who sent a beautiful handmade Tomblibooos card for Sam, he loves it.

Update 12th March 2008

We have just got back from Disneyland Paris, where we went courtesy of a local charity. Sam had a fabulous time; he loved seeing all the characters and the rides. The weather was cold but fine and we are worn out from all the walking!

Sam is doing fine apart from the terrible stutter he has developed, which is so frustrating for both him and us. You can see him trying so hard to get the word out. The speech therapist says it is possibly due to his brain functions moving from the left side of his brain over to the right side following his operation last summer. It is a case of only time will tell.

We have had some lovely post this month including a Tombliboos card from Helen in Plymouth, some great homemade Easter cards, and a sweet little gift for Sophie from Julie Barrett. Many Thanks for all these things, we love opening the post and Sam loves all the cards and books/puzzles he gets.

The ideal age range to send Sam is 2 years plus, as he is developing slowly. His speech is becoming better, apart from the stammer, and he is attempting to say longer sentences all the time. We are so lucky he is doing so well.

Sam has been having some swimming lessons which he seems to love and now he isn’t having so many seizures, it’s less of a worry for us. He still needs one to one in the pool though as he still has trouble concentrating and needs constant supervision in the water, but at least he is agreeing to get in the water now!

Sam is developing into such a character, he is such a little monkey and so stubborn, but also such a loving and affectionate little man.

Update 30th January 2008

Sam turned 5 on New Years Day and had a little party which included rides on a real fire engine with some friends and he really seemed to enjoy it.

Sam has developed a stammer over the last couple of months, which makes talking really hard work for him. It is so frustrating for all of us to listen to him trying so hard and literally wearing himself out trying to say something as simple as ‘thank you mummy’. We begin 2008 with an appointment with the speech therapist who told us he has the worst case of stammering she has ever seen in someone so young. She is referring him back to Great Ormond Street to see a SALT there as she believes the stammer is a part of his recovery from his operation and should be treated neurologically. In the meantime, she would like us to try the Lindcombe Stammering therapy treatment, which involves lots of praise and acknowledging the ‘bumps’. She is not confident this will work as Sam has a very short attention span and a bad short term memory, but we will see what happens.

So many thanks to the lady who sent Sam a Christmas gift which arrived late (I can’t remember your name or email) but he LOVED the puzzle and the other gifts which were at exactly his level of 2- 6 pieces per puzzle. We really appreciate it. Also lots of thanks, as ever, to Julie who sent lovely gifts for Sam’s birthday.

Update 3rd January 2008

What a year it has been for us. Sam has been on a journey, starting 2007 with up to 10 seizures a day, hoping he would be suitable for surgery to remove part of his brain, and leading up to his operation in June which was both a difficult and fantastic day for us all. The roller coaster ride following the surgery, starting a new school, and settling in well there with the odd bad day here and there. We were warned Sam’s behaviour could deteriorate, and he has become very emotional, obsessive and controlling since the operation. We are hoping it is part of his recovery. Lately he has shown signs of the old Sam, with fewer tantrums and aggression and the old sense of humour is back, so we are hopeful.

We have had a very busy Christmas and New Year, with Sam’s 5th birthday on January 1st too. Joe, Sophie and Sam did very well this year; they were amazed to find they had letters from each of Santa’s reindeer and cards too! They also received presents from quite a few of Santa’s Elves, which were so thoughtfully sent, and quickly opened on Christmas morning! People have been so kind to us and a great support, we are very grateful. A big thank you to Bryan the Elf, and to Julie Barratt and all the other kind people for being so thoughtful. We are thinking of you.  

The room looks so bare now that Christmas is over. Sam is looking forward to going back to school, he gets overwhelmed very easily and this time of year really tests him, he will be glad to get back into some sort of routine.

Still no seizures so far, it has been 6 months now. We are still adjusting to life without the threat of seizures looming over each day, and are finally nearly believing they are gone for good. Sam has a check up at GOSH in January, where we will probably have more MRI scans etc to see the after effects of his brain surgery. They say we must give it a year to be sure of the long term diagnosis, but he is doing well so far. Tomorrow Sam is having his birthday party, with rides on a real fire engine, and we are hoping he will really enjoy it, without missing it due to a seizure. 

Wishing all the other pals a happy and healthy new year, we do read lots of updates to see how all the pals are doing, and will carry on reading all the news in the New Year xxxx

Update 4th December 2007

A big thank you to Brian the Elf for sending Sophie a Christmas gift already, she can’t wait to open it. Also a big thank you to Julie for sending lots of parcels and gifts, including an Advent Calendar for Sophie. Thank you everyone for being so generous.

Sam is keeping us on our toes at the moment, he does not seem to be able to sleep at all, and we are all very tired. His behaviour can be very disruptive and difficult, and his school is referring him to behaviour therapy. This bad behaviour could be due to the operation he had in June, a part of the normal recuperation following brain surgery, which will stabilise over time. It could be the effect of the reduction in the medication he was on for epilepsy, which was a mood stabiliser, or it could be that he is functioning at the level of a normal two year old and these temper tantrums and frustrations are a part of his normal level of development.

Anyway, we are hoping it calms down soon, as we are all feeling the strain – even Joe and Sophie cope with a lot of disruption and aggression from Sam at times.

We are looking forward to Christmas, and hope everyone stays healthy over the holidays. Sam has asked for drums!! We have got a few letters from reindeers which have arrived, which we will be starting to open tomorrow. I can’t wait to see Sophie’s face, Sam will not really understand unfortunately, but the pictures on the cards are sure to bring a smile. Many thanks to all at Post Pals for bringing us a happy 2007, and to all the kind people who send mail, it really helps to lift a day to know there are people who care enough to send a smile to us. Merry Christmas to you all xxx

Update 30th October 2007

Sam is getting on really well at school, with only the occasional tantrum if he does not get his own way! Luckily the staff are excellent with him and deal with him perfectly. He has developed some strange obsessions including flushing the toilet each time anyone uses the toilet, which he gets upset about if anyone else does it first, but we are stressing the fact that it is not his sole right to flush the toilet each time, and other people have ‘flush rights’ too!!

His autistic tendencies are becoming more apparent now that the seizures are stopped, and it is increasingly hard to get him to cooperate in certain situations. We are hoping this will be temporary, and part of the recovery from his operation in June.

Sam will be 5 in January and I don’t think he could cope with a party this year, so we have just booked for him to go for a ride on a fire engine, which we are hoping he will love!

Many thanks to our great friend Julie, who has sent many great little treats and gifts in the mail, including some fabulous Halloween pressies. The children all benefit and they send big hugs!

Happy Halloween to all pals and families x

Update 30th September 2007

Many thanks to Julie Barrett, who sent Joe, Sophie, and Sam each a lovely gift from her holiday to Cornwall. It is much appreciated, as are the wonderful letters received too.  Also to Sam, aged 6, who sent Sam a lovely letter, which we wrote a reply to.

Sam has had a good month; he had his MRI Scan at Great Ormond Street, to see why his head has started to swell up where he had the operation. We went back for the results last Monday, and the scan shows that in the space where they took out the temporal lobe, it has filled with cerebral fluid, which has caused the swelling. The consultant says that the fluid is not causing pressure on the brain, but is keeping an eye on the swelling. We have the next appointment in January, so fingers crossed there is no further swelling before then.

So far Sam has had no more seizures, and is continuing to do well at school; his speech is really improving in his day to day conversations.

The GP has requested attempt to withdraw the antihistamine medication that Sam was on to help him get off to sleep at night. He has had none for three nights so far, and it has been okay. He is still taking up to an hour to get off to sleep, and is waking up very early, so it has been quite draining, but it is better than before he had the medication, when he would take hours to get off to sleep, crying himself to sleep, wake up frequently at night, still crying, and be miserable all day!! So at least things have improved since then hopefully!

The weather is getting colder and wetter, so Sam is going to miss his outdoor playtimes when the rain really sets in. He loves to play out in the garden in his little red car and on the slide.

Update 30th August 2007

Hope you have all had a good summer. Sam recovered well from his surgery over the summer, but has had possible complications which became apparent when his head started swelling up last week. After a trip to A+E, a day at Great Ormond Street, and then an X-Ray, the consultant Surgeon said it is just swelling for no apparent reason, but was not anything major to worry about and has booked Sam in for a CT Scan to confirm this theory. We are pleased about the CT Scan as until there is proof there is nothing sinister going on inside his head, we find it hard to believe his head would swell up for no reason. Sam is fine despite the swelling, and more than ready to begin school next week. His sleeping has been awful these past few weeks and his behaviour has been very up and down, with lots of crying and screaming. He has also been unable to cope with any situation which is unfamiliar, or crowds of people. This has been frustrating for all of us. I am hoping he can be assessed for ADHD, and a mild form of autism, which is the only way I can explain his bizarre behaviour. Hopefully if he has ADHD or suchlike, we can get him the help he needs to cope with it.

Thank you to everyone who has sent cards this month and to Post Pals who sent Sam a lovely knitted toy (which is now sitting on Sophie’s bed!) Thanks for your support through this long hard summer, we really appreciate it.

Update 31st July 2007

Sam has still had no seizures since the operation in June, which is fantastic. We are seeing a big improvement in his speech and vocabulary, but he is still getting very frustrated when we cannot understand what he says. His sleep is still affected and we have had many broken nights, where he wakes up at 3am and is ready for the day and then falls asleep at 6am, leaving us exhausted for the whole day.

We have the follow up appointment at Great Ormond Street on 13th August, where they will tell us exactly what it was that they took out of his brain, a cyst or possibly a slow growing tumour, but the surgeon has told us not to worry (easier said than done!).

We have been busy in the school holidays with lots of trips to see friends, BBQs and daytrips. Trying to wear Sam out every day is hard work!

Our house looks a tip, I will get no house work done until they go back to school in September, AND the washing machine broke down.

Many thanks to everyone who has sent cards this month, Sam received a great Bob the Builder card all the way from Alabama, USA, which he laughs at every time he sees.

Have a great summer and hope everyone is keeping well.

Update 8th July 2007

Sam has still had NO SEIZURES so far, so he has done really well. His scar from the operation is healing nicely, and he is his usual cheeky self! The only complaint we have is that now the seizures have stopped, he is not sleeping! Must not complain, hopefully this is just a phase!

He has been spoilt this month, with gifts all the way from North Carolina. Many, many thanks to Susanna and her wonderful family for sending gifts to all the children, they really are over the moon with them. Sam got a gorgeous Fireman Sam blanket, Sophie got some cute stickers for her room, and Joe was thrilled with his Star Wars Beach Towel. Sophie has been excited to receive more cards and gifts from Julie Barrett, and photos of the dog Julie helps to look after, and Sam has had beautiful home made cards from Kate Dee, and from Ellyn from Alabama. We also got a lovely email from a lady whose son is going through similar to Sam and she found us through Post Pals, which I thought was lovely. I wish I had more time and could write and thank you all each time you are thoughtful enough to think of us and send something, please know we really appreciate it.

We got back from our holiday to Cornwall yesterday, which was a nice break away. The children spent lots of time playing on the beach and splashing in the sea. The weather improved over the week and we had lots of fun.

Sam has two weeks of nursery left, and then we will have the summer holidays before he starts at the special school in September. He has visited a few times and I think it will be lots of hard work for him, there is a long way to go, to improve his concentration, speech and understanding, but now hopefully the seizures have stopped things will be calmer for him, and he will come on quicker. Fingers crossed!!!

Update 4th June 2007

Sam is doing really well following his surgery on Friday. Thanks for all the messages of support you have sent, we really appreciate it.

Update 16th May 2007

All is well here, but very busy. We are preparing for Sam’s trip to hospital for his operation. We found out that Sam has been given a place at the special school we wanted too! This is a big weight off our minds, as now we know he will get the support and care he needs at school.

Many thanks to Kate Dee for the great cards, and to Julie Barrett for the lovely letters and gifts received this morning (Joe is most impressed with your wrestling knowledge!) Also many thanks and hugs to Susanna and family from North Carolina, who sent a big box of teddies and books. Sophie and Sam are over the moon with them and Sam has insisted on taking the Fireman teddy everywhere! He is practising the zip and buckle too. Thank you all so much, it is lovely to know you care.

Update 2nd May 2007

Well, we finally have a date for Sam’s operation. We will be going in on May 31st for a stay of up to a week. The operation is called a temporal lobe resection, and the surgeon is very confident that it could help Sam. They will only be able to remove 85% of the damaged tissue though, which lowers the odds of Sam being seizure free following the operation, but we are hoping it will still have some positive effect on them. It is very scary, but we just want to get it over and done with now. Sam has been very demanding over the past few weeks, being extremely angry and quick tempered, and the stress is showing on us all. Hopefully things will improve following the operation. Please send lots of extra smiles for Sam while we are at the hospital!

Sophie’s school has begun a Young Carers Club, and there are about 6 children in the school who have someone in their family who needs ‘special looking after’. She loves going to the club, where they are doing lots of art and craft projects, and talking about the person they help to care for. I am really pleased the school has recognized the special role that siblings play, and the effects on them, of having someone who is poorly in the family. Sophie showed her whole class the Post Pals website, and explained what it does to them all. Well done Sophie!

Many thanks to everyone who has sent post, especially Julie Barratt, who always sends nice things. We really appreciate it; Sam loves all the lovely cards, and Sophie and Joe love receiving post too.

Update 2nd April 2007

Sam has had a good month. We have been up to GOSH and he is finally on the waiting list for the operation. He should have it in July or August, but obviously it could be delayed. The surgeon told us about all the risks involved, which are not to be taken lightly, but we feel that we must give Sam the chance of a life without seizures now he has been offered the chance. Sam loves going on the train up to the hospital and loves playing havoc in the doctors consulting rooms!

Easter holidays are here and Sam will be spending time with Joe and Sophie. We are planning a few days out, which he will enjoy, especially to the farm which he loves.

Happy Easter and loads of hugs to all who have sent mail this month, we are really grateful. Sophie, especially, has had a good month with gifts from Julie Barratt all the way from Crufts. Thank you so much.

Update 3rd March 2007

Sam has had a good month and has been doing well at nursery, with the odd exception.

We have had news from GOSH that Sam’s case is being discussed on Tuesday, and they will decide if he can have the operation at the meeting. So fingers crossed for us!!

We have also been writing reports for Sam’s statement and doing all that we can to get him a place at a local special school.

Sam’s seizures have been quite bad, with lots of very little episodes that are wearing him out. He has been quite out of it at times, poor little thing. We are waiting to hear about a new medication from the local hospital.

Many thanks for all the kind postcards and cards for all the children, especially the Valentines cards!! Sam has been very lucky to receive a card and a gift all the way from Sweden this month. We really appreciate it.

Update 10th February 2007

Sam has been up and down this last month. As we have been increasing his medication, his behaviour has got more aggressive and violent; to the point where he was so hyperactive he couldn’t sit still. We realised it must be the medication causing this and have dropped the levels to what they were a couple of months ago, and we have our little boy back, still full of beans but calmer and more able to concentrate, and all the aggressive behaviour has gone. Just shows what effects medication can have.

We are trying to get Sam a place in a special school, and feel we are in for a bit of a battle, as the EP is questioning if he has learning difficulties. He really does have learning difficulties, but is so up and down that if you catch him on a good day he surprises you with what his abilities are. With the operation at GOSH looming in the summer, and the setback that could cause, I feel the only way forward is in a special school. Any advice on how to support our application for a place in a special school for Sam would be much appreciated.

Sam’s seizures are still occurring regularly, with no sign that the change in medication has made any difference, so it could be that the surgery is our only hope.

A big thank you to Julie Barrett, Alan Barrett and Kate Dee who always send delightful little cards and gifts, Sam loved the playing cards with Bob, Tweenies and Fimbles etc. Sophie loves receiving the letters and cards, and is attempting to write a reply. Joe loves getting things in the post too. Many thanks to everyone who have sent cards and gifts and been so supportive, it really helps to know we are not alone in this.

Update 1st December 2006

Sam has been doing okay. We have two appointments at GOSH next month, a psychological and neuropsychiatric assessment. These will be the final appointments before Sam is offered surgery (or not). Sam has been having frequent overnight seizures, which has been making him quite sleepy in the day sometimes, which in turn affects his speech and behaviour, and ability to learn. This is quite tough on all the family, but we are all looking forward to Christmas. Sam does not really understand about Christmas yet, but I am sure he will enjoy all the presents!

Many, many thanks to Julie Barratt, who has been looking after Sophie and Sam with lots of letters and gifts, they are very much appreciated, especially the advent calendar. Thank you to Kate Dee, Alan Barratt, and to Despina, all the way from the USA. Also, many thanks to some of the other postpals, who have sent Sam some lovely cards and stickers. He says a big thank you! Sam loves all the lovely postcards and we have quite a display now, full of bright colours and characters.

Wishing you all a Merry Christmas and a Happy New Year, Love to all xxxx

Update 1st November 2006

Sam has been up and down this month. We have had quite a few appointments, including the geatroentologist, neurologist, occupational therapist, speech therapist and a visit to the Royal Free hospital for a food intolerance breath test, so we have been very busy!!

Many, many thanks to Julie Barratt, who has sent some wonderful gifts and cards, to Alan Barratt, to Post Pals for sending Sophie a great art and craft bucket, and thank you for the card all the way from Singapore!!!

Sam is very tired at the moment and his seizures are still bad at night, he falls into bed exhausted each night. Happy Halloween to you all.

Update 1st October 2006

Sam has settled in to nursery well, and seems to enjoy his time there. We have an appointment at GOSH on Tuesday with the neurologist, to discuss surgery options for the removal of the cyst. Sam’s seizures are still very unpredictable, often happening at night, and are probably moving on from complex parial, to secondary general tonic clonic type seizures, which we will discuss with the neuro. Sam is on the whole coping well, but can get upset at times, as he doesn’t understand what has happened to him.

Many thanks to Julie Barratt for the lovely letters, gifts and postcards to Sam and Sophie, which we will reply to as soon as there is time. Sophie has loved receiving mail, and feels very grown up. Thanks also to Ruth, for the gorgeous tiger for Sam and the letters and also thank you to Kate Dee for the wonderful cards. We really do appreciate everyone’s kind thoughts; you really keep us going, especially on bad days.

Update 31st August 2006

Sam came home this morning from Great Ormond Street Hospital. He has been in for 3 nights for telemetry monitoring and an MRI Scan to see if he is suitable for surgery to remove the cyst from his temporal lobe, and the results show the seizures are beginning in the temporal lobe, meaning the Neurologist will probably recommend surgery, so we are now awaiting our next appointment.

We have an appointment at the Royal Free Hospital to see a Gastroentologist to see if Sam’s weight has stabilised following his recent change to a dairy-free diet, and for further investigations to see if Sam has more food intolerances.

We had a lovely holiday in Cornwall, and came back good and tired!

Sam has been so naughty this summer, both he and I are looking forward to the start of the school term next week, the summer has gone so quickly, and we have been so busy, but Sam likes structure, so nursery will do him the world of good.

Many thanks for all the lovely post for Sam, and the letter to Sophie from Julie was a treat, Sophie insisted on replying straight away!! Thank you also to Julie and Alan Barratt, Kate Dee and the Agawok girls.

Update 2nd August 2006

We had an appointment at the Royal Free Hospital on 5th July and saw a gastroentologist who recommended a dairy free diet for Sam, to try and resolve his bowel problems and very loose motions. We have managed to get him onto this, with good results so far!! We will review if the diet has been a success in 6 weeks at a follow up appointment. By the way dairy free chocolate is lovely, but do not ever eat dairy free cheese – YUK!!!!!!!

We have a date for Sam’s admission to Great Ormond Street at the end of August and we are looking forward to getting the results of the scans, to see if Sam is suitable for surgery or not.

Many, many thanks to everyone for all your kind thoughts, cards and gifts. Thank you to Julie Barrett for all the wonderful cards and postcards, to Alan Barrett for the toy tractor and cards, and to Becky Butler, it was lovely to hear from you, thank you for the lovely Bob the Builder book, Sam loves hearing this again and again! Thanks also to Victoria for the wonderful homemade dinosaur card, and to Cherie Vincent for the super homemade Giraffe card, and to Kate Dee for the lovely Jungle card. We have all the cards up on display and Sam loves looking at them and telling me to look at them!!

Sam is doing really well, and is still attending the mainstream playgroup, and also First Step, a special needs playgroup. Look for to see all the good work they do with a large number of very special children.

We had another trip to the hospital this morning for blood tests, which is quite traumatic for us all, as Sam seems to have barely any blood and it takes lots of attempts to get any blood out.

We also had a trip to A+E on Sunday night following a cluster of seizures and he had diazepam emergency medication for the first time, which was scary. Sam’s seizures are still very unpredictable, occurring both at night and in the daytime, but he is coping very well and is still a cheerful little chap.

Have a good summer everyone and take care xx

Update 19th May 2006

Sam recently attended an appointment at Great Ormond Street Hospital and is on the waiting list for overnight telemetry monitoring and an MRI Scan, to assess if he is suitable for surgery to remove the cyst in his temporal lobe. We are waiting to hear from them.

Sam is currently on a new medication and seems more alert and full of beans! The seizures are still occurring daily (and nightly) though. He has been seeing a speech therapist, and will be starting nursery in September. Sam’s bowels are still not quite right, causing him to be still in a nappy, but I am hopeful he will be referred to see a gastroentologist to find out what the problem is there.

A big THANKYOU to Victoria for the lovely homemade card, to Alan for the cuddly dog, to Julie Barrett for the toy tractor and the postcard from the New Forest, to Online Angels for the lovely blanket, to Post Pals for the cards to Joe and Sophie, and all the love we have received. It really helps us to know we are not alone. Sam loves opening the post every morning now.

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Robyn H

15 June 2012

Story written 2010

Robyn is a wonderful, cheeky, toothless 7 year old girl, who in May 2009 was diagnosed with Neuroblastoma. As with many children with this cancer, it had spread by the time she was diagnosed, so her diagnosis is known as stage 4 – high risk. Robyn has responded really well to her treatment and her primary tumour in her pelvis was removed successfully in September 2009.

Unfortunately she suffered some nerve damage in her right leg and foot (as the tumour was attached to the nerves that serve her right leg) and as a result she is still having difficulty walking the shortest distances even with the help of crutches. To explain the full horror of the treatment that Robyn has had to endure for the last 8 months would take a long time. Her mother was once told by a consultant that no other cancer has this type of treatment – it is extremely aggressive – fight fire with fire…

Robyn is very beautiful, inside and out, and extremely active. She used to enjoy gymnastic classes with her cousins, dancing, and would ride her bike for miles. She loves Harry Potter, High School Musical and Lady Gaga. She has a strange liking for mini coopers – in particular, yellow ones. She loves Spongebob, animals, and the colour yellow. She also loves dressing up and much to her mother’s disgust – applying make up!

Robyn would dearly love and appreciate receiving a letter from anyone who could spare the time to brighten up her day. I speak for every parent of a child with cancer when I say they are the bravest, most beautiful beings to walk this earth.

Update 29th September 2013

We are very sorry to say that Robyn has passed away. Robyn’s Mum Lisa recently posted;

“Our family are finding things fairly difficult at the moment but we most definitely do find strength and comfort in the continued support shown to us by you all. Regardless of how rubbish the day is, when the postman arrives there is always a handful of post from the wonderful Post Pals. Thank you too to everyone (from all over the globe!) who takes the time to write to Robyn. She ALWAYS appreciates your cheerful efforts.”

Update 26th July 2013

A little while ago Robyn had another round of MIBG therapy and made a video during it which you can see here

The round of MIBG didn’t make any difference and Robyn was given her stem cells back to try and boost her blood counts but is still needing transfusions.

Two weeks ago Robyn had a cycle of Zometa (good for long term bone pain) but it has caused very severe pain. She is on large amounts of Oxycodone and Fentanyl lozenges. If the pain is under control then she’s often asleep. Her pain was everywhere for four days, every bone, muscle and joint. Now it’s only in her right leg.

She has a medium size lump at the back of her head which she is having radiotherapy on and a second one also appeared. When she had the CT scan on the tumours she was struggling for air. Slight panic ensued and she was given oxygen for an hour. The cause of this was probably an increased dose of Oxycodone and her little body was protesting.

This last week has been constant pain for Robyn with anger and tears. Then the odd hour of no pain with laughter, chatting and apologies. I cannot bear her apologising. Never should she have to apologise for her feelings and behaviour when she’s ill and in severe pain.

She has been unable to walk any distance since Saturday, only to transfer from bed to chair. At 2am she walked down the stairs and ate a yoghurt and some cheese; she was delighted with herself.

Update 2nd May 2013

Thank you Postpals for Robyn’s balloon (Viks) and all the ecards she received (I recongnised a few names there!), she had over 50. These cheered her enormously whilst having mibg therapy. We fly home tomorrow. Thank you!

Update from Post Pals 22nd April 2013

Robyn is currently an inpatient and the hospital have an Ecard system. Please send Robyn a cheerful note just by filling in the form here, the details you need are Robyn Higgins and Floor 4. Why not share your favourite joke or funny poem?

Update 22nd April 2013

Robyn moved on from Post Pals in October 2010 as she had completed treatment and was NED (no evidence of disease). She worked hard to regain full mobility, went back to school, joined the Brownies and was enjoying life.

Unfortunately in April 2011 scans showed that the cancer had come back, there were 2 small spots in her skull vault and a small amount in her abdomen, thankfully her bone marrow was clear. The UK only offer palliative treatment so her family turned to America for help.

Robyn had her First Holy Communion (which had been arranged before her relapse) looking beautiful in her white dress and curly hair before flying out to Philadelphia to start intense treatment. Robyn remained in the USA for several months undergoing a tough regime of chemotherapy. Initially the area of Neuroblastoma responded to the chemo but later progressed, so Robyn was changed to a different type of chemotherapy.

Robyn has had lots of different treatment on both sides of the Atlantic since 2011, some have worked better than others. Now, in 2013, Robyn has had 2 rounds of chemo in the UK and has just returned to America for another round of MIBG therapy.

Robyn would love some cheerful post to make her smile.

Update 2nd October 2010

I think it is time for Robyn to move on from Post Pals now as she is currently well. I cannot thank you enough for all that Robyn has been sent. I cannot believe that people thought of Robyn when she needed them and I am amazed by the thought put behind the letters and gifts. Thank you everyone.

Update 20th July 2010

Hi everyone. It has been a long time since I have updated you on Robyn and for that I truly apologise, but I think, looking back, I found certain things really difficult being so far from home.

Anyway, Robyn underwent 5 months of antibody (immuno) therapy at The Children’s Hospital of Philadelphia and this was fairly harsh treatment. This was compounded by the fact that she had to attempt to learn to walk again in between treatment with intensive daily physical therapy. She did so very well and I am immensely proud of her. It is very scary being so far away from home with a seriously ill child but I would do it all again in a flash.

We came home from The States on the 1st of June and Robyn attempted to try to return to school for 2 hours a day. She was still extremely underweight but we were continuing to build her up nightly via her NG tube. She can now walk really well albeit with a minor limp – now we just to teach her how to run.

On the 7th July Robyn and I flew back out to The Children’s hospital of Philadelphia where she had received her treatment for her final scans and bone marrow aspirates. These eventually came back as ‘clear of cancer’ and we are all, of course, delighted. Although it has to be noted that Robyn’s scans have all been ‘no evidence of disease’ since November 09 and that although this is fantastic news, any Neuroblastoma family will tell you that this disease, in particular, is notorious for returning.

So! While we were in America we lived at the Ronald McDonald house in Philadelphia, a wonderful house with even more wonderful staff and volunteers ensuring that families like ourselves with seriously ill children far away from the familiarity of their own homes were as safe, warm, fed and cared for as we could possibly be. Every morning when we came out of the lift into a beautiful hall there were pigeon holes with each family’s door number on. We were number 19 and number 19 was ALWAYS stuffed full of Post Pals post. You have no idea how special Robyn used to feel opening her post with all her little friends she had met. Also, on the days that she just couldn’t get up because she was feeling so weak, I would either coax her downstairs or bring it all up to her. Over the months that we were in Philly we must have had scores and scores of letters and parcels – and then Greg and Tommy would bring loads more with them from England when they visited!

I couldn’t possibly thank or even respond to everyone personally but please rest assured that if you sent Robyn post (or any other child for that matter!) you have done something very special and for that a huge heartfelt ‘THANKS’ goes to you

Update 19th April 2010

Robyn is very poorly at the moment. She is in hospital with shingles and has been for 2 weeks now. Sorry I haven’t updated her page, it is just that things have been so stressful.

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Reuben D

15 June 2012

Story written 2005

Reuben was born in December 2002 just before Christmas, so he was the most wonderful gift we could ever have wished for! As Reuben developed during his first year, family and close friends would occasionally comment that his head tilted to the one side, we just put it down to him being tiny and with all the developing from sitting to crawling to walking it would be something he would stop doing.

Reuben went to stay the night with his Nanny and Dan Dan in May 2004, he was 17 months old. When we went to collect him, I thought he looked a bit wonky and was walking quite ‘dandily’. Anyway that night when I bathed him I noticed a curve in his spine. I think the time away from me, had enabled me to see that something wasn’t quite right with his stature.

Anyway Reub went to see lots of Drs and was referred to the Orthopaedic Hospital in Birmingham. We were told that he had very severe scoliosis. This was very difficult to accept as he appeared and still does to be a typical active toddler.

Reuben had lots of tests and we were told that he had 4 fused ribs and an ‘s’ shape spine. The capacity of his one lung was also being affected as the spine was compressing it. Reuben’s only hope for a relatively normal life was pioneering surgery which had been developed in America and Reuben’s specialists had just got the licence to perform it here.

In January of this year, Reuben had his first titanium rib implant. It reaches from his neck over his rib cage and attaches low down on his spine. This will be lengthened 2 -3 times a year and will be replaced by bigger models about three times. As Reuben is such an active little boy, they think the implants may break so will need replacing also should this occur. This surgery will have to continue until Reuben stops growing, around 18 yrs of age. Early next year, he has to have a second device which runs under his armpit to the bottom of his rib cage and also two spinal rods each side of his spine. It is hoped that they will lengthen all 4 rods at the same time to reduce the operation numbers.

We are very fortunate however that Reuben is a very strong and spirited little boy and he will not let anything drag him down. He is just 2 yrs of age and after having such major surgery he was at home playing with his toys just 4 days after the operation. He is truly a wonderful and brave little chappy.

Update 15th March 2009

Sorry it has been so long, things here have been so very manic. We went to Disney in November which Reuben and Louis really enjoyed. It was a lovely break and the weather stayed dry but boy oh boy it was cold.

Reuben had an appointment in Birmingham last Saturday and we were told he needs urgent surgery to replace some metal work and also to expand on the opposite side. We were not thinking he would outgrow the Titanium rib so quickly but it appears he has had a huge growth spurt.

So, the little guy goes in on Tuesday for surgery. This time he is going into the Orthopaedic Hospital. We are hoping it won’t be quite so manic and busy. This time Jonathan has to take him without me as we have baby number 3 due in 2 weeks and it is all a bit much.

Apart from this, Reuben is great and doing so well at school. He’s still a real inspiration to us all when we moan about silly day to day stuff and I try to put things into perspective!

Update 5th November 2008

Reuben is doing very well all things considered. He is back at school and doing very well too. We’ve just had parents evening and despite his time off school he is doing so well and his teacher is full of praise for him – phew.

As the weather has started to get colder, we have noticed Reuben becoming increasingly stiffer and putting his shoes on and basic things like that are appearing more difficult. However, he never complains, he just grits his teeth and gets on with it all. He is getting some pain in his hip too which can keep him awake at night. We are awaiting a response from his Surgeon on these matters.

We still do not know what is scheduled for Reuben next. His Paediatrician has written to Birmingham to ask when and what is going to be done next. We are still awaiting a response…

Last Christmas was not a great time for us after Reuben had his surgery. So we have decided to make this one extra special for him and for us as a family. We are going to Euro Disney for 4 days at the beginning of December. Reuben is so excited, Louis too. So, fingers crossed that the weather stays dry for us.

A huge thank you to all the people who continue to send post to Reuben and to Louis as well.

Update 20th August 2008

Reuben received a lovely book yesterday. Thank you very, very much. It has some wonderful ideas to keep the boys amused over the wet sunny days!

The money that enabled Post Pals to send this book was raised by Pal Jon Paul O.

Update 4th August 2008

Reuben went into Birmingham on the 23rd of July for his long overdue surgery. It was hard going, but we are so relieved it is now done. Reuben had two incisions in his back. Each one was to lengthen the metal work he had put in last December. He is doing very well now and seems not to have suffered the same trauma as he has previously. He has been back to hospital since with severe head pains and vomiting. We were advised to take him as it could have been linked to the surgery but thankfully it was just a nasty old bug!

Looking at Reuben now, 12 days on, it is hard to imagine that he has had surgery when he is lifting his 2 year old brother and running around. We go back to Birmingham next Monday to find out when the next lot of surgery is going to be and what they intend to do.

At the end of August we are going to Scotland for a week by the sea, we are all looking forward to it very much!

We’d like to say a continued thank you to all the people who send post to Reuben and to Louis.

Update 18th June 2008

Reuben was due to go into hospital today to have his two implants adjusted. We had a phone call last minute to say the operation has been cancelled AGAIN! This time it was due to them being unable to get the parts required for Reuben’s back. It just adds to the anxiety again, but we should be used to the cancellations by now. The operation is now due to go ahead on the 23rd of July.

Apart from this, Reuben is very active and well. He tires easily and by evening he is a little grumpy but it is hardly surprising as he is such a busy little bee!

Reuben has had so much post in the past month so thanks to all of you who have been so kind. It is wonderful what you do, it certainly makes Reuben smile (and Louis too).

I have a pile of letters and cards which I have been meaning to reply to and the pile is growing daily, so please forgive me if I don’t reply, I just don’t have the chance at the moment.

All of the post is so greatly appreciated, but a special thanks to the following people: Kate Dee for the wonderful cards and gifts. Reuben loved growing the dino egg and is now growing a sea horse. Thanks also for the Power Rangers. A lady from Largs in Scotland sent Reuben and Louis a book, pencils and rubber set, thank you. Ellyn Yeager from Alabama. thank you for the post. Thanks to Jade Boyd who sent two lovely books. Emma from Wrexham wrote to Louis and sent a lovely card with surprise glitter and sprinkles, thank you. Emma, his favourite animal is a Giraffe, his TV favourite is Mickey Mouse and Postman Pat and I think he likes the colour blue. Final big thanks to Adam and his mum from Ashford in Kent. Thanks for the lovely letter and beautiful pictures, I will reply soon.

Update 7th April 2008

Reuben was due to have the metal rod and titanium rib extended at the end of April. This was to be done before we go on a family holiday in May. When chasing the date, I was told the list was full. So there will no operation at the end of April. It is so frustrating as we are going on holiday and try to organise things to keep the family as normal as possible. I’m not sure what we will do now; I’m awaiting news from the hospital.

Apart from this Reuben is on great form and is really well and back at school.

Update 13th March 2008

After Reuben’s operation on the 12th of December he recovered very well. He had major spinal surgery and after a couple of weeks at home you would never know what he had been through. He is coping well with his new limitations now that he has metal work fitted from the top of his rib cage to Lumbar Spine No. 3 and another rod from as far up his spine near his neck as they could go to the same vertebrae. Looking at the X-rays it is very hard to believe he is carrying it all around with him day to day.

He is now back at school and is coping well. He is still taking part in PE although he is now unable to do forward rolls etc. He is thankfully still able to climb on apparatus and swing on the ropes. I am sure his teacher is going to collapse with fright one of these days!

We went back to Birmingham last week and he is scheduled to have further surgery at the end of April. They are going to lengthen the VEPTR and titanium rod then. It will mean 2 incisions which we haven’t been used to before, but knowing Reuben he will bounce back pretty well. The only trouble is that as he gets older he worries more and he picks up on bits of conversations so it’s hard to distract him anymore.

Reuben’s little Brother Louis turned 2 on Saturday! It is hard to imagine where the time goes.

Post Pals has really helped Reuben on his road to recovery. He really enjoys seeing post on the doormat for him! Thanks to Julie, Kate, Karen, Michelle, Linda and all the wonderful people who take the time to volunteer.

Update 4th December 2007

Reuben was scheduled to be in Birmingham today for his operation tomorrow. Unfortunately we had an answer phone message left for us telling us it has been cancelled as they needed the theatre space for an emergency.

Reuben’s operation is now on the 12th of December. We are pretty gutted as it is so close to his Birthday and to Christmas and we have lost that week of recovery before them. We hadn’t told Reuben he was due to go in, so at the moment he is still none the wiser thank goodness.

So for another week, we have to pray that he doesn’t come into contact with any germs which could threaten the operation. Easier said than done as the amount of coughs, colds and chicken pox flying around at the moment is huge!

Reuben had a big early Birthday party on Sunday with 35 children there. It was pretty wild, but he had a great time although he was exhausted.

So, hopefully this time next week we will be in Birmingham awaiting the dreaded operation.

I am sure this will be the best chance I will get to wish everyone reading this and to everyone at Post Pals a very Happy Christmas and New Year. The work you do is so valuable and we thank you very much. Here’s hoping for a better 2008.

Update 22nd October 2007

Reuben had an appointment in Birmingham today. We have finally had a date for his operation. As long as it isn’t cancelled for the 4th time, it is due to take place on the 5th December. I know there is never a good time but it is so close to his birthday and Christmas, it is sure to spoil them for him.

Reuben is having his VEPTR implant completely replaced and 2 new isola rods fitted to either side of his spine. He was due to have an anterior growth arrest done on some extra vertebrae which are growing, but that isn’t going to happen at the moment. We are pretty relieved as it is nasty and they apparently have to do it from the front of his chest. This with the other two operations concerned us. Thankfully, Mr Marks decided that it was too much to put him through for too little a result.

Generally, Reuben is keeping very well. He seems to have grown lately. He is getting increasingly tired and he looks more twisted as he walks and especially when he runs, but the surgery should hopefully help that. He is going to miss about 6 weeks of school which is a pity, but of course it could be far worse.

We do feel much happier after today’s meeting that the right decision has been made for our little boy. I am just willing Christmas to be here then the worst will be over.

Thanks again for the post, he loves it!

Update 2nd July 2007

Reuben’s operation for the 11th July 2007 is now cancelled. The surgery had been booked on a day with another child and Reuben needs the day to himself as the operation is 7-8 hours long apparently. Anyway we are waiting now for a new date. It has all been a bit of a nightmare as arrangements had been made for Louis at home whilst we were away. Now it’s a struggle as friends, family and Louis’ child minder are due to go away in August so it could be tricky, but hey ho it could be worse.

One of Louis’ little friends has been diagnosed with Ecoli, so at the moment we are in quarantine until Louis’ results come back clear (fingers crossed).

Reuben is fine, he is tired at the moment, and I think school is taking its toll. At least the summer holidays will soon be here. Reuben had a great time when we were on holiday a fortnight ago. He did lots of swimming and learnt a little Spanish (very cute). Shame it hasn’t stopped raining since we got home!!!

Update 2nd May 2007

Today Reuben was meant to be in Birmingham Children’s hospital having his VEPTR implant lengthened but we are at home! We had a last minute phone call to say the operation was cancelled. The surgeon who was due to carry out the procedure wasn’t happy about doing the operation and so we were called in to the hospital on Monday to discuss what the plan was to be.

To cut a very long story short, he was being considered to have a second VEPTR put in near to his spine so we thought we were going to discuss this operation and when they were going to do it. They have told us that this operation is now off as it was in their opinion too experimental and short term. Reuben is now unfortunately in line to have spinal rods fitted next month.

We certainly were not expecting this, as we had previously been told that this was something he would need but they would hold off for as long as they could as it is risky and also the infection rate is high post op. Reuben is also having a growth arrest operation on a rogue piece of vertebrae which is extra and is growing, making his top curve worse.

We managed to have a look at the CT scan and clearly saw the spine and to be honest from the ribs up it just looks like a blob of melted candle wax. It still beggars belief as he is still so fit and healthy looking and completely mobile.

We don’t know what the future holds post op, so if anyone has any experiences of Isola rods please email us, as we are craving information and I can’t find anything on the internet.

Thank you again for everything you do, it is much appreciated. Thank you so much to everyone who has written and sent parcels to Reuben. A very special thank you to Kate Dee for the Power Ranger, he was over the moon with it and I had to persuade him not to take it to bed!!

Update 23rd April 2007

We have been notified that Reuben is going into Birmingham next Wednesday (2nd May). We haven’t had any consultation about this or what the future surgery plan is for Reuben so we are none the wiser really. Next Wednesday they are going to lengthen the new part of the VEPTR which they fitted last September. I am hoping that they will be able to give us an idea of their plan for our little fella next week. We would just like to have an idea of what’s what, especially as Reuben is now in school.

Reuben hasn’t however been in school for a few days as he has had tonsillitis so he is on antibiotics. Hopefully it won’t affect his operation date. We don’t want to prolong it too much. We also have a holiday booked in June which will be great for him and for his wound healing in the sunshine.

Not sure how and when he will return to school after this operation as it is all new to us, but I guess we will have to see how it goes. I have always been one for planning but I am fast learning that where Reuben is concerned and Louis too, it is just not possible!!

Thank you so much for the post. Reuben and Louis really enjoy it. Reuben loves the fuss, it just emphasizes that he and his ‘special’ back are special.

Update 29th March 2007

Reuben had an appointment on March 19th in Birmingham. The object of the appointment was to see if Reuben’s spinal curve had worsened since his last operation. Reuben was really anxious about going despite us reassuring him that he was only going for an xray and chat. When we arrived at the orthopaedic hospital, he was just so relieved that it wasn’t the Children’s hospital where he has his surgery. He is really switched on to it all now and we have to be quite careful what we say in his presence!

We saw other children at the hospital who obviously had severe spinal curves as they were unable to stand straight etc. We were struggling to accept the diagnosis of Reuben being very severe as he appears to be so ‘normal’? Anyway, once Reuben had his xray, we spoke to his specialist and he explained that Reuben has 2 curves like an ‘s’ shape. This means one curve balances out the other which is why he isn’t bent to one side. So having a double curve is causing them a headache as they don’t know what to do next.

At the moment he has one VEPTR on his rib cage and they want to also fix in isola spinal rods but not until he is around 7yrs old due to infection risks and the other associated risks involved. So at the moment the specialist doesn’t know whether to put in another VEPTR on the opposite side from the top to the bottom of his spine until he has the isola rods, or leave him and see what happens.

The surgeons have not had a case like Reuben before, and to be fair he couldn’t make a decision as to what they will do. So it has been left that we will receive a letter within 2 weeks to tell us what they have decided. So life is kind of on hold again and when the postman drops the mail through the door my heart is thumping!

Reuben just had his first parents evening and he is doing very well at school. The sad thing is that the teacher told us of his talent for PE. He is really adventurous and enjoys it very much. Depending on whether he has this second VEPTR will depend as to whether he will be able to continue doing PE as it is at the moment. So we will have to see what happens!

Update 3rd January 2007

Reuben is great at the moment. We still have random days where he re-lives events in Birmingham Hospital even down to food he ate there 2 yrs ago (no I am not joking!!) We don’t go back now until March 19th which is nice as we have a busy time ahead of us starting tomorrow!!

My little fella is starting school! I feel utterly devastated by the thought but I am sure it will be okay. We fought for so long for Reuben to have his first lot of pioneering surgery and ever since I seem to be battling on his behalf for one thing or another. It feels odd handing him over to a teacher who has 18 other little people to look after when he is used to pretty much 1:1. He is more than ready though and I think he will enjoy it. We have to make the best of it because if he has spinal surgery later this year he will miss a lot of school and his life will be more restricted.

Thanks to all the wonderfully kind and thoughtful people who sent presents to Reuben and Louis too!! Christmas was truly wonderful and Reuben was overwhelmed with it all. Louis I have to say just enjoyed eating the wrapping paper on the day but has since discovered the joys of playing with his new toys and books!!

There are too many people to thank one by one, but you know who you are so from the bottom of our hearts ‘THANK YOU’. Special thanks do have to go to Julie and Alan, Kate Dee, Steve and Kirsty (Pal).


Update 12th November 2006

Reuben had his operation on the 20th of September. The operation went to plan but it was terribly difficult for Reuben who was left pretty traumatized by it all. He was in much more pain than usual and controlling this was a huge challenge. The Surgeons replaced the middle section of the VEPTR as the previous part could no longer be extended. This was the first time they had done this operation.

We returned to see the Surgeons a couple of weeks ago and they were satisfied with the way surgery had gone and the VEPTR is supporting the rib cage and his lung is able to expand. However, when studying the x-rays they noticed that he is now leaning more to the right (spine) and this is a cause for concern. I think now that they are happy that the lung and ribs are okay they are going to need to put their thinking caps on as to how to sort out this next problem.

They are looking to perform pretty major spinal surgery next year, when will depend on the next review in March. They have a couple of options but both are things the surgeons have never done before so we are pretty worried. The next surgery will also impact on activities he is able to carry out.

It will be a huge blow for Reuben. He is getting more and more aware of what is going on and he gets very upset and anxious. All we can do at the moment is enjoy his 4th Birthday, Christmas and baby Louis’ 1st Birthday which all come and go before March 19th!!!

Reuben currently is back to his lively happy self and apart from the odd nightmare about hospital life is pretty normal. He has started two 1 1/2 hr sessions a week at his Primary School which he adores so he is being a busy bee which is just as well as he is so ready for full time school.

Thanks to everyone who sends Reuben post and a special thank you to Kate Dee for the fantastic balloons. Thank you to Julie and Alan Barrett and to Bob for the bear who Reuben now calls ‘little Reuben’.

Update 17th September 2006

Reuben has his 4th operation on Wednesday the 20th of September at Birmingham Children’s Hospital. He is due to have part of his implant replaced and also lengthened. Reuben is yet to learn of his operation as we don’t intend to tell him until the night before. He isn’t coping too well at the moment with his ‘special’ back and is frequently re-living previous operations and hospital experiences, so the timing of this operation isn’t great, but hey when is it???

Apart from the above, Reuben is on good from and is a joy to be around. He is so full of energy and life and soooooo many questions, they are just never ending. I didn’t realize a 3 year old could have such a thirst for knowledge!!!

Thank you to Julie and Alan Barrett for the post.

Update 10th July 2006

Reuben is currently experiencing difficulty traveling in the car as he is finding it very uncomfortable. He has been seen by an OT who doesn’t really have any ideas as to how to help, which is a shame when we want to spend the day at the seaside!!! Reuben’s surgeon has been approached by our GP to see whether his next operation needs to be brought forward, and maybe this might help him in the car. Reuben is still just so crazy about his baby brother which is lovely and he still enjoys his post. He asked for a pinboard for his bedroom so he can look at his postcards etc.

Update 22nd June 2006

Reuben is really well at the moment apart from a heavy cold which just won’t shift. He still really enjoys the post he receives. We are still awaiting confirmation that his new baby brother Louis’s spine is okay, but at the moment he is a bit small to tell without x-rays etc so we will wait until he is a little bigger!!

Reuben has started pre-school one morning a week and he loves it, it was hard letting him go without me but with full time school starting in January next year I have to let go sometime!!!

Update 13th March 2006

Reuben had a very successful lengthening of his titanium rib at the beginning of February. We are not sure at the moment how much he was lengthened by. The next surgery will involve the fitting of a new middle section as the titanium rib has been lengthened as much as it can go. The surgeon was very confident about this and it appears that Reuben is doing very well on the treatment. This time even Reuben’s wound healed with no infection or complications so all in all it went very well.

On the 8th of March Reuben’s baby brother was born. His name is Louis George and he weighed 7lb and 3oz. Reuben is very smitten at the moment. I hope it continues.

This month Reuben was sent cards from the card making forum. The timing was just perfect as so many came after his operation, I think he felt even more special. All of the cards received were really wonderful, thank you to all the ladies who must have spent such a great deal of time making them. We will treasure them always. Thank you so much to Kate Dee for her beautiful gifts and the most fantastic balloon we have ever seen.

Update 29th January 2006

Reuben has had his operation brought forward to Wednesday 1st February in Birmingham Children’s Hospital. He is having the titanium rib lengthened. It is a relief really that they are not fitting a second device on this occasion. We haven’t really discussed it with him as he got very stressed out when we talked about going for a check-up last Monday. I am sure he will be fine; he is a strong and gritty little fella. Thank you to all concerned for the wonderful post.

Update 9th January 2006

Reuben has another operation on the 8th of February in Birmingham. We go for tests on the 23rd of this month and that will determine what he will be having done. We are hoping it is just a lengthening of the titanium implant. I will be 36 weeks pregnant with No 2 when he has his operation, so the least complicated the better really!!

Reuben has been very well this month and his Birthday and Christmas presents were ‘out of this world’. Reuben had lots of farm toys, which have gone down a treat, especially as he will now play for short periods on his own using his wonderful imagination and Mummy and Daddy can have a little break!

We would like to thank everyone who sent cards and gifts to Reuben. I would have liked to have written individually but there were so many I just can’t. We would however like to thank KATE DEE from the bottom of our hearts.

Update 28th September 2005

Reuben is doing really well. His scar has healed nicely and he is back to being a normal and busy 2 year old. We have booked a family holiday and Reuben is so excited about going that i think he may burst!

Thank you again for the lovely post Reuben has been receiving, it really makes his day.

Update 30th July 2005

Reuben had his operation on the 13th July in Birmingham. The surgeons managed to lengthen his titanium rib by a few millimetres. Not terribly satisfying for the surgeon, but they cannot stretch Reuben too much or everything will just collapse and break. Hopefully he willl be left alone now until around January, unless anything breaks whilst he is playing wildly!!!!!

Reuben had a nasty reaction to the gas this time and was very sick. Fortunately as with all the children you read about on this site, he bounced back and is now a very busy 2yr old once again.

Reuben told us that he had a very ‘special’ back, we try not to keep secrets from him and prepare him as well as we think we can for trips to hospital. I would hate him to be shocked and unprepared for anything planned.

Reuben loves his post, it really does make him so happy.

Update 22nd June 2005

Reuben just gets so excited if there is any post for him, we are overwhelmed by peoples kindness. Thanks to all, but special thanks to Katie Dee and Lesley Southerden.

Reuben has his next operation now on the 13th July in the Birmingham Childrens Hospital. He will be admiited on the afternoon before and we are unsure at the moment how long he will be in for. He is having the titanium rib lengthened.

Update June 11th 2005

Reuben’s surgery is now due to be 3rd August.

Update 1st June 2005

Reuben is really chuffed with his letters and parcels (Mummy and Daddy get pretty excited too). Reuben has had a lot of emails this month. Reuben should have had an operation in May but didn’t. We will be phoning next week so I guess it will be now be June. Reuben has had chicken pox but he coped very well and is now back to his usual jolly and wicked self. Thank you for the yummy biscuits and the books from Israel! Also to Sue.

Continue reading...

Nicole B

15 June 2012

Story written 2004

Nicole was diagnosed with a Spinal Fibro Sarcoma tumour in Sept 03.

She has had 4 months of intensive chemo and has almost completed 30 sessions of Radiotherapy. She is staying at Sam’s House, a CLIC funded property in Bristol. She hopes to return home when Radiotherapy has finished, to complete her chemo at Exeter.

The biopsy of the tumour exposed her spinal cord and she has been paralysed from the waist down and we have been told that mobility is unlikely to return.

Nicole is coping considerably well, and is an inspiration to us all. We are unsure of her long term prospects, but can only pray that she makes it through.

Update 6th February 2008

Nicole is now moving on from Post Pals. It has been a privilege to be involved with Post Pals, and it has been a real help to Nicole and ourselves, to know that we have support from people all over the World! We would like to wish you continued success, and hope that you are able to cope with the demands that success has brought you!

Update 5th December 2007

Nicole is well. We are waiting for a date for her 6 monthly MRI scan, which is due anytime now. She has an appointment with her spinal surgeon in Frenchay early in January next year.

The girls enjoyed their summer holidays; we spent a week at Haven in Exmouth and a week at “Tom’s Retreat,” at Hoborne Naish nr. Christchurch. On our visit to Naish, Nicole got to meet two of her long term Post Pals, Liz Cook from Brighton, and Stuart & Liz Knight from Southampton! Liz came across from Brighton with her mum for a day out at Paultons Park, and also visited us at home in Torquay recently, staying for the weekend, which the girls really enjoyed!

Lauren is now at school full time, and I have returned to work full time, hence the lack of updates! Nicole has been swimming with her school class and continues to learn the piano and enjoy Brownies. She has also started performing arts at school, and was a model on the catwalk at the school fashion show last week! In September, she got to go backstage at the McFly concert in Torquay, and meet all of the lads, get their autographs and some great photographs with them!

The girls are getting very excited about Christmas, and I expect they will get far too many presents as usual! We would like to wish everyone at Post Pals a Happy Christmas, and a Happy, Healthy New Year.

Update 29th June 2007

Nicole really enjoyed her 8th Birthday on 14th June and would like to thank everyone for their gifts and lovely cards. She had a party with her friends at the local theatre and watched Peter Pan on Ice. Her favourite present was Singstar for the PS2. She is becoming quite the Diva, and knocks out a great “In Your Eyes” by Kylie!!

She has also recently been up to Dartmoor with her school and had a great time exploring the moors. She was the first child to stay at the Youth Hostel in a wheelchair. Her school carer went with her, but it was a big step in her independence to be away from home for 2 nights!!

In May, Nicole completed the Cancer Research Race for Life in her wheelchair, with help from Mummy and “Team Coley.” Despite terrible weather conditions, she completed the race in 58 minutes and with matched funding from Barclays (Daddy’s Employer!), they raised over £4,000!!! Thank you to everyone at Post Pals for your support and donations.

Health wise Nicole is doing great and an MRI scan in April was all clear. She is also doing well at school and has a great group of friends that she has been close to since nursery.

Update 2nd April 2007

Nicole has had a quiet start to the year, but has a few exciting events lined up over the next few months. Today, she performed a piano recital in front of almost 100 people! She only started learning about 8 weeks ago, but her confidence has grown so much, she had no hesitation in getting up on stage and knocking out a few tunes on the Baby Grand Piano! In May, she will be competing in the Race for Life again in her wheelchair, and hopes to raise over £1,000 for Cancer Research UK. If you would like to support “Team Coley,” click on her homepage link above, and then on the orange “Donate Now” button. Barclays Bank will be doubling all donations received! You can also read a full update on Nicole’s progress this year.

Update 7th January 2007

Nicole has just returned from a dream trip to Walt Disney World in Florida! It was her second visit, and this time she felt much stronger, and was able to go on many rides that she couldn’t go on 2 years ago, including some of the smaller roller coasters! Christmas flashed past, but thank you to everyone who took the time to send cards, many of them beautifully hand made, and especially to those who sent gifts including, Naomi Whittingham, Becki, Stuart & Liz, Hayley Thorn, Julie & Alan Barrett, Celia Raven & Co, and Nicole’s special Christmas Elf, Liz Cook!!

Early in the New Year, Nicole & her sister Lauren went to see Kylie in her Showgirl Homecoming Tour at Wembley Arena, so it has been a busy but enjoyable couple of months! Daddy has done a full update on Nicole’s website, with photos of the Florida holiday. You can access it by clicking on the homepage link above. Happy New Year to you all and thank you for your continued support.

Update 28th September 2006

It is quite an appropriate time to bring you all up to date, as it is almost 3 years to the day since the MRI scan that changed our lives forever, the MRI scan that diagnosed our 4 year old daughter with Cancer. It’s been 3 years of highs and lows, tears and laughter. Who would have believed at the time, that we would make it this far and Nicole would look as gorgeous as she does on the front cover of Cancer Research’s Christmas Catalogue!! We are so proud of her, and would encourage you to order a copy of the catalogue, by clicking on this link It could become a collector’s item! Please place your order before Christmas, and help more children (and adults) like Nicole survive and prosper.

The girls are back at school and nursery now, but we had a very busy summer break. Nanny and Auntie Tracy came down from Portland to visit for a week, and we all went to Haven Holiday Park in Weymouth for a week mid August. Nicole & Lauren had a great time at the Kids Clubs, and dancing away with Rory the Tiger, and Bradley Bear in the evening disco with party dances. We also went to Chickerell and Weymouth carnivals during the week, and the girls went on all the rides, enjoyed the Red Arrows display, and the carnival procession with all of the floats. Nicole wanted to catch up with a friend she made last year at nearby Littlesea Holiday Park in Weymouth, so we visited Hayley and her Mum, Dad and Brother Adam one afternoon.

The big event in September was the South Devon Community Awards. You may remember that Nicole won her category as “Child in the Face of Adversity,” at last years awards. This year, we nominated her school carer, Barbara, in the categories of “Carer of the Year,” “Making a Difference in the Community,” and “Education Worker of the Year.” Barbara deals with all aspects of Nicole’s care, physical and emotional needs at school, and has been a big influence on her settling into mainstream school, and her positive outlook on life. Barbara has had a tough time over the last few years, but has always put others first. She worked in Care Homes when she was young, has worked with a number of special needs children, and has fostered over 25 children! Needless to say, we were absolutely delighted when she won the category of “Carer of the Year,” and you had to pick us all up off the floor, when she was announced as the overall winner on the night!! Nicole also got to go up on stage, as she presented this year’s child award to a lovely young lad called Liam, who suffers from Severe Eczema, and Cerebral Palsy. The evening went on until around 1.00am, and Nicole wore everybody out on the dance floor!!

We have nominated Nicole for a Pride of Britain Award, organised by ITV, the Daily Mirror, and GMTV. She is in the “Children of Courage” category, and we nominated her for the bravery she has shown throughout her treatment and the way that she deals with her disability. She has also done a lot of fundraising and profile-raising this year, for Whizz Kidz, Cancer Research, CLIC Sargent and Postpals. A lovely lady called Ciara came down from Granada TV in London to visit Nicole a couple of weeks ago, and we are now waiting to hear if she was successful. All the nominees will be assessed by a celebratory panel, including Richard Branson, and if she is recognised by the awards, she will get to go to the awards ceremony in London on 6th November. It would be wonderful for her to receive such an accolade, so fingers crossed!

Update 13th July 2006

Nicole is well and enjoying the last few weeks of school before the summer holidays. The MRI scan came back all clear, so we can relax now until November time when the next scan is due. She has just finished a 6 week course of Ranitidine. She was suffering from bad stomach pain, which was worrying us, but the medicine seems to have done the trick. It looks like it was just a bad case of indigestion, probably caused by sitting down for much of the day.

Nicole has also been to Bristol for more botox injections in her legs, and also to see her spinal surgeon at Frenchay. He is happy with the rods in her back, and will x-ray her again in November when we go up for the MRI.

Nicole’s 7th birthday was on the 14th June, and her party was on Friday 16th. Every birthday is now a landmark for us, and another step away from diagnosis and treatment. We remember celebrating her 5th birthday as if it would be her last, and pray that she will celebrate many more birthdays to come. Thank you also to everyone at Postpals who sent Nicole some lovely birthday presents and cards.

In early June we went on Nicole’s Make a Wish trip to London and had a lovely time. Later in the month we visited Jamie’s Mum Kelly and her new baby Amy Grace. Amy was born on 14th June 2006, so shares Nicole’s birthday!!

Update 19th May 2006

Thank you to everyone for all the lovely Easter cards and gifts for Nicole & Lauren, especially Liz Cook, Julie Barratt, Becky Butler and others! Nicole & Lauren now receive more post than Sara and I put together!! The Postman even knows where to leave the parcels when we are out!

Nicole’s latest scan came back clear, which is fantastic news now that she is 2 years off active treatment! She enjoyed meeting Hi-5 after their concert in Torquay, and is looking forward to her Make A Wish trip to London at the end of May. We will be staying at the Hilton Hotel, and going to the Lion King Show, Rainforest Cafe, The London Eye, Madame Tussards, Hamleys, London Zoo, and anything else we can fit in!! Please see website for full update.

Update 21st February 2006

For those of you in the South West of England, look out for Nicole on ITV West Country News on WEDS, THURS or FRIDAY night. It is likely to be on Friday, but may be earlier. We have just come back from Tesco in Ivybridge, where Nicole helped to launch Tesco’s new fundraising initiative with Whizz Kidz, who funded Nicole’s power chair. She had a star collecting race with another young lad called Joshua, and the press, TV and local MP were there!

Nicole and I are also going to the local radio station, Gemini FM on Thursday morning, to see how the radio programmes are made, and there is a good possibility we may be interviewed on air!! Locals should tune in to 96.4FM, and I think you may be able to listen online at Gemini FM, and listen live to Chris Edgecombe (Edgey in the Morning). We should be there from around 7.30am until 9.00am, so set your alarm clock!!

Update 6th January 2006

Thank you to everyone who sent cards, gifts and presents to Nicole and Lauren for Christmas. They were inundated every day and the playroom looked great with all the cards hung up! Special thanks to all of you who sent hand made cards, they really are very special and obviously took a lot of time and care to make. Nicole had a lovely letter with 4 cards from a school in Japan. Her class at school is hoping to do a project to send something back to them, as they have been studying Japan and its culture all term! Special thanks also to Nicole’s elves, Lorna Rogers and Liz Cook, who sent a big parcel each, full of lovely presents. Thanks also to Becki, Naomi, Jilly, Woody the dog and the Ravens for your gifts. Thank you so much!

Nicole was well over Christmas and had a great time. She has returned to school and has received her powered wheelchair, so is able to get herself to school and back now, with daddy trying to keep up! She has been nominated and won a little star award from Cancer Research UK. She will be going to the Aladdin pantomime tomorrow to watch the show and receive her award from Syd Little and Craig from Big Brother! She is up at the spinal unit in Salisbury on 9th January to be measured for a back brace and will have her next MRI scan in May/June 2006.

We wish everyone at Post Pals a happy and healthy new year! Keep up the good work; you are making a lot of children very happy. Thank you for your continued support, it means a lot to us.

Update 1st December 2005

Firstly on the health front, we went to Bristol for an MRI scan and Botox injections a couple of weeks ago (10 Nov), and nothing has changed since the last scan in June. This is fantastic news, as Nicole is now 18 months off treatment, so we can relax now and enjoy Christmas. The next scan is likely to be in 6 months time. We are hoping to get the scans closer to home, at Exeter, or hopefully Torquay. Bristol is a long way to go for just a scan, and Nicole understandably gets worked up and upset when we go. I took her up on my own for the first time, and she was sick in the car. Luckily I had a cooler bag to hand just in time. A tricky manoeuvre when you are doing 70 on the motorway!

On 13th November we went to Salisbury District Hospital (Odstock), where they have a specialist spinal unit. We have been trying to get to see them for some time now, as we want to ensure we are doing all we can to look after Nicole’s spine, now the Oncology is under control. We travelled up on the Sunday as it is a 3 hour drive, and stayed overnight. We were hoping for a nice comfy room for the night, but it turned out to be two rooms on a disused hospital ward! It was just as the cold snap started, and we had trouble trying to find staff on a Sunday to turn the heating on!!

We spoke to Mr Tromans the Spinal Consultant, and the Physiotherapist, Occupational Therapist, and Orthotist. We covered some of the ground that we have already dealt with locally, but it was useful to know that much of what we are doing is correct. We are trying some new medication to try and control Nicole’s continence. She has started a new medicine called Oxybutinin which relaxes her bladder, with the aim of keeping her dry between her catheters. It has had a dramatic effect, and worked almost instantly. However, it has side effects of nausea, diarrhoea, and gives you a dry mouth. We kept these symptoms from Nicole initially, but within a couple of days, she was struggling to swallow her sandwiches, so we had to tell her. We have now reduced the dose, and that seems to have improved things.

We now just need to try and control her bowel. Nicole takes Movicol to help things along, but there is no pattern. It could come at any time, and in any size, shape or form!! We have to keep a bowel diary for Salisbury, and they will then advise us how to move forward. They are talking about the possibility of enemas or suppositories!

The Physiotherapist and Occupational Therapist were helpful, and have come up with some ideas for exercises and equipment in the home, and will liaise with our contacts locally to implement their plans. The Orthotist looked at Nicole’s leg callipers, hips and posture. We will go back up to Salisbury in January to see him, to see if Nicole’s new stretches are helping, and to cast her for a back brace. We are not keen on this idea, because it is likely to be uncomfortable for Nicole, but it is something they are keen to try, as she does tend to slouch over to one side in her wheelchair, and needs her hips to stay even, to prevent further scoliosis of the spine.

They are also keen for Nicole to do as much standing as she can, as this will strengthen the bone density in her legs, and helps with bowel and bladder function. She has a wheeled standing frame, so will spend as much time in there as our busy schedule allows!! That’s it for health for the moment!

We went to Prestwick in Scotland for half term, and stayed at Malcolm Sargent House, part of CLIC Sargent Cancer Care. And have been to lots of firework parties.

Update 27th September 2005

It is 2 years since Nicole’s diagnosis!

She is doing well and enjoying being back at school She has several trips to the hospital over the next few months for urology, a spinal unit and MRI in november/december. She is also currently being assessed for a powered wheelchair.

Nicole has completed her disney princess stick book – thank you to everyone who has sent stickers. She has now started to collect pin badges, so if anyone is looking for an idea for a small gift/Christmas present, these would be very popular! Nicole has also enjoyed receiving many postcards from all over the country/world!

Update 22nd June 2005

We saw our spinal specialist in Bristol on Wednesday and he couldn’t believe how well Nicole was looking! He was the surgeon who pinned Nicole’s spine back together, when the biopsy went wrong in September 2003 and her spinal cord was exposed, causing her paralysis.

He hadn’t seen Nicole for almost 12 months, and she has changed a lot since then! He told us that he honestly didn’t believe Nicole would still be with us, but was delighted that she had come so far. He had a good look at her spine without x-raying and said that it looked in good condition. The muscle and fat around her spinal injury is improving and filling in, because when the tumour fell out of her back, it left a big hole.

The paralysis is still permanent, but she appears to be building up the strength in her trunk, which she will need in the future to transfer herself and get around on the floor. She has also had another botox injection in her legs, to help with her standing and stretching exercises.

Update 16th June 2005

We saw Nicole’s Oncologist in Exeter today for the results of last weeks MRI scan and she has told us that there are no problems from her initial look at the pictures. She will have a better look next week, but the signs are good, which is great news!!

She has indicated that the frequency of scans may now be reduced to every 4 or 5 months, which feels like another step in the right direction.

Update 14th June 2005

Just a quick thank you to everyone who has sent Nicole messages, cards and gifts for her 6th Birthday today. As usual, she has been inundated from Post Pals, and has had great fun this morning opening all of your presents, and beautiful home made cards. They really are very special.

She had a great Fairy & Pirate party on Sunday with all of her school friends and we are having a family barbeque when she gets home from school this afternoon. We are keeping a close eye on the weather!

We have loads to update you on, but as you know we have been busy with our trip to Eurodisney, Nicole’s Birthday and lots of routine appointments to Hospital. Nicole is feeling well and we will get the results of last weeks MRI scan on Thursday. I will attempt a full update within the week!

Update June 2005

Thanks to Sue for the regular cards for Nicole and Lauren, Liz Cook is still cheering up the guestbook! Nicole enjoyed the teddy tshirts (Posty Project) and the DVD from Stuart Knight. The first thing Nicole still says every afternoon when she gets home from school is “Have I got any post!”.

We have just got back from 3 days in Eurodisney, and looking forward to Nicole’s birthday on the 14th. We have several trips to Bristol and Exeter hospital this month.

Update 23rd February 2005

It’s just over a week until the next scan on 3rd March. People often wonder how we feel when Nicole has to go to Bristol for her MRI. We found the following poem on another little girl’s website and would like to share it with you.



A Sleepless Night

Tomorrow our lives could change again
Will the scan be clear, will the tumor return,
now…or never?…
We try to smooth the ups, the downs.
It’s been nice breathing calmly, nice not to frown,
But tomorrow our lives could change again,

Tomorrow we’ll sit while the bangs and clicks
surround us…engulf us….
staring down the tunnel, waiting for the films
that free us…or damn us…
The probation could last for another three months,
Or find us retreating behind false fronts
That we take out tomorrow to hide the anguish
around us…within us…

Tomorrow our lives could continue on course
or falter…get altered…
It’s amazing to think that one simple test has
such power…such impact…
To the world around us the test dates come
one after another, eventually numb
To the fact that tomorrow could leave us again
bewildered…off kilter…

Tomorrow we hope that the treatments have helped
change things…delay things…
Are there further treatments that we can survive
do we want them?… can we stand them?…
Has the Cancer been killed; does it lie there in wait?
Will it show up tomorrow, or some much later date?
Tomorrow a crossroads, or merely a rest stop
on a journey….to eternity…

Tomorrow our lives could change again
Tomorrow our world could be turned upside down
tossed asunder…it’s no wonder…
That we dwell in the past, trying to recall the way.


It is difficult to put it into words how we really feel, but the words in this poem come pretty close. Every scan is a crossroads and we hope that our journey doesn’t take another twist or turn.

Update 22nd January 2005

Nicole and Lauren were inundated with cards and presents from Posters over Christmas- special thanks to her Elves- Nicky and Liz.

In early December Nicole was an angel in her school play and did her family proud. She wasn’t too good over Christmas with colds, tonsillitis and then an infection over New Year, how ever last year Nicole was in the middle of her treatment up in Bristol so they were all just gland and grateful to be home over Christmas without lots of hospital trips.

On the 28th of Jan, Nicole is going to an award ceremony, she has been short listed to 2 in the “child who has shown courage and bravery and lives life with a smile despite their problems”. Good luck to her, we hope she has a fantastic time there 🙂

Update 22nd December 2004

Scans show no tumour growth despite being off treatment for 7 months. They are going to delay the spinal surgery as there hasn’t been any dramatic change, and they want her as strong as possible. She played an angel in her school play.

Update 27th November 2004

Nicole’s new wheelchair – complete with snakes on the wheels arrived in time for her wish trip to Florida.

She met all the Disney characters and had a wonderful time, as did her whole family.

Nicole is seeing the spinal specialist on the 29th of November, to discuss the possibility of full spinal rods and is having scans to check on the tumour on the 1st of December.

Update 13th October 2004

Nicole has started to have botox injections into her legs. She is very much looking forward to her wish trip to Disney in November.

Update September 2004

Nicole should by now have moved into a more wheelchair friendly house, we hope it all went smoothly for them, but they won’t have internet access for another few weeks. She had several hospital appointments and her scans towards the end of August, the initial report is that there is little change in the size or activity of the tumour, which the family are seeing as good news. The spinal surgeon who put the original pins in her spine (when it collapsed during a biopsy of the tumour), was surprised at how far her back has now curved and is worried its at danger of folding forwards or sideways unless operated on. It was originally planned for this to take place in September, but they are now putting it off to the new year when he may have to pin the whole of the spine to stabilise it. She is also going to start a treatment of botox injections into various muscles in the hope it makes her more comfortable, they feel it is very unlikely she will walk again.

After her scans, Nicole went on a trip around the bear factory (Post Pals had organised this), she got to choose 2 bear skins (one for her and one for Lauren her sister), kiss a little heart for each and have them made up for her and then pick out some clothes. She chose a pink sparkly unicorn (Kat also has one of these as they are adorable!), with a swimming costume, sunglasses and hat, and for Lauren a bear in a bikini. Afterwards they went for ice cream at the Haagen Daaz Café. Thank you to the Bear Factory and Haagen Daaz for making this possible.

The address to send mail to is still the same for Nicole

Update August 2004

Nicole is doing well and has broken up from school for the summer holidays. Nicole has a new wheelchair on order, it will be metallic blue with curly snakes on the spoke guards!

We’ve had her school report which was very pleasing, she’s really doing well despite only being there for over half the days and we met her new teacher.

Her parents are very pleased: “I don’t think we could have hoped for better given what she has been through in the last 10 months, and we are very proud of her.”

Nicole went on another wheelchair course she learnt things like tipping the wheelchair to get up and down kerbs, crossing the road, and negotiating ramps.

She has finally had the NG feeding tube removed (hurrah!).

The main concern with Nicole at the moment is the stiffness in her legs. It is becoming more and more difficult to straighten them, making it hard to get her dressed and for her to sit on the floor comfortably as well as other implications.

The family went away to visit family and spend quality time together getting up to all sorts! On top of this they are also looking at moving house. It is likely that they will move before school starts again.

Post Pals have kindly arranged for Nicole and Lauren to visit the Bear Factory in Bristol whilst we are up there on 26 August, where they get to choose the skin of the teddy bear, kiss a little heart before it is put in the bear, see it made, and then take the bears home. This will be followed by a trip to Haagen Dazs Café for ice creams all round. I think I may get to eat too unless Nicole really surprises us!!

Update July 2004

Nicole is doing very well and is at school full time when she is not doing Physiotherapy, Hydrotherapy, wheelchair/standing frame assessments, or Hospital Clinics! She has made some good friends, they just seem to adapt so easily to Nicole’s disability. The other morning, several girls were skipping in the playground, something Nicole used to love to do. Seeing Nicole was left out, her friend Charley got Nicole to hold onto the ends of the skipping rope, whilst she wrapped the rope around her waist, and ran around the playground like a horse and cart!

Update June 2004

Her Birthday Party went superbly well! Nicole looked absolutely beautiful in her Blue Cinderella dress and tiara, and Lauren was quite cute as Piglet also. Around 34 children came to the party, which was a Disney themed fancy dress disco! We also had Elfic the Jester, who put on a fabulous one-hour show of juggling, plate spinning and unicycling, which kept the kids spellbound! Everybody then tucked into a MacDonald’s Happy Meal, with (appropriately) a Finding Nemo toy, to keep with the Disney Theme.

We got the results of her scan at the beginning of June, the tumour has shrunk slightly again, its appearance indicates that the level of disease and swelling has reduced. Our next step is for her consultant to discuss any possible surgery on the tumour. She’s now started hydrotherapy which was hard work but a big step

Nicole is continuing to improve her eating, and has said she is hungry on several occasions. Something that we haven’t heard for a long time! She has had marmite sandwiches for the first time this year, and is also eating crisps and chocolate.

During half term the family visited the penguins and seals at Living Coasts in Torquay, Nicole is enjoying school so much and couldn’t wait to get back after half term. On her birthday school friends joined us and we had a Disney themed fancy dress Disco with Happy Meals.

Update May 2004

May has been filled with going out and about, the family went to Prestwick in Ayrshire, Scotland for a week taking in all the sights of the area.

Nicole had her first full week of school, which is a fantastic achievement so soon after treatment and she is loving it! Nicole had a friend round to play after school for the first time and went on a school trip to the Zoo. She had great fun playing with in the garden and she’s been going to birthday parties.

We met with her Physio, and tried out some standing frames. She’s spent a few days in hospital with an infection following her Chemo.

Update April 2004

Nicole has finished Chemo and radiotherapy, unfortunately there is still a mass showing on her spine after the MRI and its unlikely she will be able to have any more treatment and surgery may not be an option. Nicole’s now allowed to recover from the chemo and will repeat the MRI in 2 months to see if the tumours still active.

We got to spend 2 weeks at home. It has been the longest spell we have been together since last September! If she’s well enough she will go to school next week, she hasn’t been for a month.

Over the Easter weekend Nicole took her new hand propelled trike to the seafront and pedalled all the way to the end of the pier and back. We’ve bought her a handheld DVD player some more Disney DVD’s to relieve the boredom on journeys to Bristol with a borrowed Gameboy.

Update March 2004

Treatment has continued at the hospital and Nicole went to school for a full day which was great. While we were in hospital she sees a teacher for an hour a day and we managed to get out and feed the ducks and go on the swings for the first time since September ‘03.

We did the walk to raise funds for Nicole to go to Disney. In total, 210 children took part in the walk and probably just as many adults.

Update February 2004

We went into Exeter for Chemo, which took 3 days, with more scans scheduled for the end of March.

We have also received many messages, cards and gifts from, which always cheers Nicole up. Thank you to everyone for their support, it really makes a difference.

Nicole has been in a pushchair since being paralysed and this has affected her independence. However, a few weeks ago, we discovered that Sam’s House had a wheelchair that had been donated for families to use. It turned out to be bright pink, Nicole’s favourite colour! As we are still waiting for our NHS wheelchair, the manager of Sam’s House has agreed that we can keep it until Nicole grows out of it. She has become very adept at using it, after only a few weeks.

Update January 2004

The chemo has affected her appetite and she has been losing weight since she came into Hospital. Because she has lost weight since being diagnosed she has had a nasogastric tube put in.

Update December 2003

Nicole started treatment at Bristol every day (Monday to Friday) for 6 weeks, with chemo at the weekends.

The results of the MRI scan show that the tumour had not grown/spread.

Over Christmas Nicole was discharged from hospital, but she had to go in for antibiotics on Christmas Day & Boxing Day.

On New Years Eve 2003 Nicole has her first Radiotherapy treatment.

Update October 2003

Nicole started chemotherapy. We spent a couple of nights at the hospital and were then given a room at CLIC house, a home from home with 10 bedrooms near to the hospital.

Nicole was transferred to Royal Devon and Exeter, much closer to home and it enables one of us to stay at home with Lauren. It also enables Nicole to spend some time at home between treatments and we are delighted when she was allowed home for the weekend of Lauren’s birthday on the 8th November.

Update September 2003

Nicole had MRI scan and we are told that the huge mass surrounding her spine is almost certainly a tumour. We will need to go to the Bristol Royal Children’s Hospital immediately.

Nicole is taken to theatre, to have her central line put in and to have her biopsy. When opening Nicole’s back to do the biopsy, part of the tumour had fallen out and had taken some of her spinal vertebrae with it. The tumour had liquidised the bone in her spine, as well as the surrounding muscle and tissue. She had haemorrhaged badly and was very lucky to be alive. After another hours agonising wait while they patched her up, we were shown down to the Intensive Care Unit, where Nicole would spend the next few days

As there was still little response in Nicole’s legs and feet, another MRI scan showed a large blood clot where the tumour had been, which was pressing on her spinal cord. She had further surgery to drain the clot, and her spine was need to be pinned with 2 x 4 inch Titanium rods, screwed in with 8 screws. Nicole spent the next few days in Intensive Care. About half of the tumour still remained on the inside of her spinal column and she would have to start chemotherapy treatment, we were told that she had a Fibro Sarcoma tumour. It had not yet spread to any other organs and was not in her bone marrow.

A Fibro Sarcoma is a very rare and aggressive tumour, usually found in adults, with 80f cases found in the knee. It is almost unheard of in infants.

Update June 2003

One night while getting Nicole ready for bed, we noticed a small lump on her back Our GP referred us to the Paediatric Consultant at the local hospital, he who felt that it was likely to be a fluid sac or fatty lump. Nicole carried on life as normal, enjoying the bouncy castle, skipping rope and hula-hoop, she had been given for her birthday. The results of an ultrasound scan of Nicole’s back but they were inconclusive.

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Niamh W

15 June 2012

Story written 2007

Niamh has had various health problems since early childhood. She was born with a condition known as CHOANAL ATRESIA which meant that at birth she was unable to breathe through her nose. This meant that at one day old she needed surgery to help her breathe. Over the next 3 and a half years she had 9 more operations on her nose and was eventually able to breathe through it.

At that time we thought that Niamh had had her share of health problems. However in November 2005 when she was aged 5, she woke up one morning completely blind. We spent several weeks in hospital where they diagnosed a type of optic neuritis that basically means inflammation of the optic nerves. At the same time they also found a type of brain tumour called a PINEAL GLAND TUMOUR. This was monitored by the doctors and isn’t requiring treatment at present. They were unsure if this was connected to the vision loss.

Niamh returned to mainstream school and started learning Braille in January 2006 and has coped well with her problems. Her eyesight did begin to improve but in May 2006 she had a second attack of OPTIC NUERITIS.

In August 2006 she suddenly developed paralysis of her lower limbs and was readmitted to hospital. The doctors then linked her vision problems with this paralysis and diagnosed a very rare type of MS known as DEVICS DISEASE. Her condition has gradually improved after a relapse and further paralysis in October. She has made good progress; she is back at school and fully mobile again. She is on a cocktail of drugs to keep her condition under control including steroids and immunosuppressants. She has regular check ups and fortnightly blood tests (for which she is really brave.)

It has been a very scary few months for us but she has coped so well and adapted to everything. She truly is a little star and an inspiration to us all.

Update 6th March 2011

Sorry we haven’t updated for quite a while. Niamh, Kiera and Dylan enjoyed a great Christmas. Thank you for their lovely cards and gifts.

Niamh is doing well at present and has been relapse free for 4 years this month. We can’t quite believe that, it is amazing. We still have ups and downs and the horrible medication but it is quite an achievement. Thank you all for your ongoing support.

We are going to see Justin Bieber in a few weeks and the girls can’t wait.

Update 2nd November 2010

Niamh didn’t have a very good October and spent the early part of the month in and out of hospital. The good news is that she is now well and recovered from a very bad viral illness which the doctors initially thought was a relapse.

Niamh was getting very tired and almost constantly sleeping as soon as she got home from school each evening for around 2-3 weeks and this is very unlike her. This led to lots of the usual tests, investigations and blood samples. Niamh, as usual, was amazingly brave. A great achievement was that Niamh had her very first MRI scan whilst awake. She has had all her previous scans done under general anesthetic. This time though she managed to do it whilst awake. I am not sure who was most scared (me, her mum, or Niamh). After getting very upset and taking medication to try and sedate her (which didn’t work) we eventually got the scan done. She was very brave (it is very noisy in the scanner, I thought it was about to blow up) and she needed to be very still for long periods of time. She was so proud of herself afterwards and has said she wouldn’t be worried if she had to have another MRI scan. The good news was that there was nothing on the scan to indicate a relapse. She also developed a nasty itchy rash which we later discovered was part of the viral infection.

As well as all this, Niamh’s granddad passed away last week. She has been very upset about this as it was only 11 months ago that she also lost her grandmother, so we have had a pretty tough few weeks.

I am travelling to LA next week on Niamh’s behalf to attend a conference regarding NMO, the rare disease that she suffers from. It will be very exciting to meet others with the same illness. The incidence in 1 in 100,000 current cases and new cases are 1 in 1,000,000, so it’s pretty rare and even more unusual in children than adults. It is a great opportunity for me though and has been funded by The Guthy Jackson Charitable Foundation in the USA. I will update you when I get back.

Update 1st October 2010

Niamh and Kiera enjoyed a great birthday – thank you for their lovely cards and gifts.

Niamh is doing well at present. Her recent eye check up showed no change which is great.

Update 15th August 2010

Niamh loved her Post Pals pillow case of Hannah Montana. It has pride of place in her newly decorated Hannah Montana themed room.

Niamh’s ct scan for her nasal problems was clear, so her doctors are trying a lose dose of antibiotics for several weeks to see if this helps. Niamh spent a day at the children’s hospital in Oxford during the school holidays. She wasn’t very happy about losing a day of her holiday to visit the doctors. The visit was worthwhile as she was reviewed by a specialist NMO team who will be contributing to her care in the future. She also had a very new type of eye scan that may help in the future should her eye sight deteriorate. Her antibodies for NMO in her blood were also examined and as usual she was very good about getting her blood taken – a huge 5mls was needed which is quite a lot.

We can now relax now and think about our holiday. September will involve a few more hospital appointments though.

Update 14th June 2010

Niamh has continued to do well the past few weeks. She still has lots of blood tests, investigations and doctors’ appointments. She is due to have a ct scan on her nose and sinuses next week as she’s been having some nose problems again. She has just had lots of bloods done that need a repeat in 2 weeks as well, but she is always so brave.

She is working hard in school but really looking forward to the six weeks school holidays. We are visiting friends in Arizona for a few weeks in August and can’t wait.

The success of the Russell Howard show has really shown in the increase in mail etc that Niamh has had. Thank you all for taking the time to help in this worthy cause. Niamh has had so many lovely gifts, emails, cards and letters the past few months, there are too many to mention, from far and wide. She loves to read through her weekly post as it arrives and it always brings a smile to her day. She particularly loved the Zookey sock teddy that came from New York, thank you Susy for that.

Update 31st January 2010

The new year is here and we hope Niamh continues to be in good health for the rest of 2010.

Niamh is doing well and has a few doctors’ appointments and investigations planned in the next few weeks, so please wish her luck.

She has been working very hard in school and is now learning touch typing as well as Braille.

Thank you for the lovely art set and cards that Niamh had to cheer her up in January.

Update December 2009

We had a wonderful Christmas. Niamh had lots of wonderful gifts and cards from Post Pals. Thank you all for every single one as she loves reading them all and opening the gifts. Thank you to our elves as well. The bath bomb polar bears were a great hit although it was sad to see them melt and she also loved her audio cds. We opened her gifts on Christmas Eve as we always do. She has some great surprises from Santa as well.

We went to see Miley Cirus (Hannah Montana) in December and we had a wonderful time. We were very lucky to be moved to really good seats so Niamh was able to see a little.

We hope that the New year goes well for all our Post Pals friends. Happy New Year.

Update November 2009

November has been a very busy month for Niamh. It was her brothers first birthday and she really enjoyed this and loves having people around to visit.

She is still doing really well health wise but we just wish she would gain some more weight. We have a few check ups to come and a visit to the Dietician this month.

School is going really well and Niamh is learning to touch type as well now.

Update 15th September 2009

Thank you everyone for Niamh and her sister Kiera’s lovely birthday wishes and goodies.

Update 5th September 2009

Hi everyone. I have had a lovely summer and I spent most of it at my nanny’s caravan near the seaside. So I have had lots of fun and fresh air. I have been well and I’m due to see my doctors again soon. I have moved to junior school as well.

I am very excited as it is my birthday soon on September 14th and it is Kiera’s on the same day. We can’t wait. I am going to Legoland next weekend with tickets from Post Pals – THANK YOU! Then I will have a party at home.

We are also going to see Hannah Montana in concert in December and I am so excited.

Thank you for all my lovely post and I loved the Jacqueline Wilson audio book CD I was sent. Thank you so much.

Update 1st July 2009

Niamh has been unwell with shingles but is now recovering from it.

She is loving the weather we are having and is looking forward to a few weeks off school and enjoying the summer.

Thanks for all her post which she really enjoys getting.

Update 1st April 2009

After doing so well for such a long time, Niamh has had an eye test which shows a slight deterioration in her sight. Her doctors think this means she has had a slight relapse. So next week in half term she will be in hospital getting intravenous steroids for three days. She isn’t looking forward to this so will need some extra smiles to cheer her up. The steroids have horrible side effects as well and she hates the needles.

Otherwise she is doing really well and loves her new baby brother, Dylan.

Update 14th January 2009

Niamh had a wonderful Christmas. She did become unwell and spent a day in hospital on the 28th December, but recovered with antibiotics.

Both Kiera and Niamh would like to thank you all for the lovely gifts and cards. We have a tradition now of having our Post Pals Christmas on Christmas Eve and open all the postie gifts then.

Happy New Year to you all.

Update 2nd December 2008

Kiera and Niamh are very proud to announce their new little brother, Dylan Samuel, just in time for Christmas. He was born by c-section on the 24th November. He is a perfect addition to our family. Niamh loves him to bits and she’s a proper little mother and helper.

Update 24th October 2008

The girls had a lovely birthday, thank you all so much for their lovely cards and gifts (see below). We also went to Thorpe Park for the day with the tickets given to us by Post Pals and had a wonderful day.

It is now only just over 4 weeks until the girls’ new brother or sister arrives. Mum is having a C-section on 24th November and we are all very excited and busy preparing.

Niamh is still on all her meds and doing well, but we still need to fatten her up a bit.


The girls received some lovely gifts and cards from you all, thank you.

Update 7th September 2008

Niamh is doing well and looking forward to school.

She is also looking forward to hers and Kiera’s birthdays on the 14th September. We are doing the Post Pals Thorpe Park Trip as part of their birthday treat.

Thanks Post Pals!

Update 7th August 2008

Niamh is continuing to do well health wise and our doctors appointments are 3 monthly now.

Niamh and Kiera are enjoying the summer holidays even if it is rainy.

Their mums bump is getting big and they are getting more excited.

They both have birthdays coming up next month as well and can’t wait.

Many thanks to you all for your cards and gifts, especially Katie Dee and Jennifer Castle.

Update 8th July 2008

Niamh is doing well. We have been to parents evening and were very proud to hear how well she is doing with her Braille. Niamh is learning Welsh Braille, so if there is anyone out there who does Braille in Welsh we would love to hear from you.

Many thanks to you all for Kiera and Niamh’s lovely gifts and letters this month. Special thanks to Katie Dee as Niamh loved Pooh bear and also to Jennifer Castle for all your lovely letters. Keep up the good work.

Update 6th June 2008

We have returned from Florida after having another amazing holiday there. If you get the chance go it is amazing. I think we enjoyed it better this year as Niamh was a lot fitter and feeling better than during last years trip. We had a scare prior to going as Niamh was in hospital for a few days with an infection, but luckily she still went and was well there.

She was a very happy girl in Florida and we got to meet lots of characters (including Minnie Mouse) and a few more dolphins (her favourite).

Health wise Niamh is doing okay and still taking her immunosuppressant meds. At present we are really struggling with her weight, she is seeing the dietician but losing weight. It’s very hard to encourage her to eat. Other wise all is well.

Another important bit of news is that we are expecting a baby sister or brother for Niamh and Kiera in November and they can’t wait!

Thanks you to Katie Dee and everyone who has sent cards and gifts to both Kiera and Niamh in the last few weeks. It is always appreciated.

Update 9th April 2008

Niamh has had a very good few months and she has finally stopped her steroids this month. This will be the real test to see if she remains relapse free without steroids and only her immunosuppressants, so please keep everything crossed for her.

We are also planning to revisit Florida in early May as the girls enjoyed it all so much last year.

Thank you for all the post.

Update 5th January 2008

Niamh had a wonderful Christmas and really enjoyed getting her posties along with her sister Kiera. It really meant a lot to them both to receive all the wonderful gifts and cards from their Post Pal friends. We had an early Christmas where they opened their Post Pal gifts on Christmas Eve, which they thought was wonderful. Niamh was very impressed with the cards she received from Rudolph and his friends.

Niamh has made really good progress this past year, much better than we could ever have hoped for. She continues to take immunosuppressants and is on a low dose of steroids. She is growing very slowly and we are trying to encourage her to gain weight, although her appetite is poor. We are hoping to stop the steroids in another 10 weeks, fingers crossed.

She will be in hospital this week for a day and needs to have a needle in her hand for a few hours for tests to make sure her body hasn’t got dependent on the steroids. So we are hoping that will go well.

Wishing everyone a happy and healthy New Year and thank you all again for your kindness. Special thanks to Wendy, Andrew, George and Anna Pettifer from Australia, Despina from the USA, Maria and Michael, Jenny, Helen, Jenn, Martin, Jackie and Jamie, Laura H, Ruth and also Craig and Abby for their lovely presents. More thanks to Julie Barrat and family (Niamh loved the seal) Maria Carney, Emma Hoole and Helen Brierley.

Update 15th December 2007

Niamh is very excited about Christmas and can’t wait for all her post pals cards and gifts as we are saving them up for her. Thanks to everyone xxx

Update 5th November 2007

Niamh is doing really well and looking forward to Christmas arriving. She is already making her list for Santa. She loves getting her posties, so keep up the good work!

Update 11th September 2007

Niamh is still doing well and looks forward to school in September. She is also looking forward to her and her big sisters birthday, which they share on September 14th.

Thank you all for your cards and smiles.

Update 1st August 2007

Thanks again for all our lovely post pals gifts, love Kiera and Niamh.

Update 5th July 2007

Niamh continues to do well. Her recent MRI scan was stable and she is weaning down her steroids. She is looking forward to her school holidays as well. Thanks to all our post pals.

Update 6th June 2007

Niamh has had a wonderful month after her holiday in Florida. Niamh has been really good with yet more tests and investigations at the hospital. June 14th she is to have an MRI scan to check the pineal gland tumour and the areas on her spine caused by devics. She will be in hospital for a day for this. Wish us luck please.

Thanks to everyone, especially Kat, for all Niamh’s post and the wonderful mystery gift for her sister Kiera.

Update 20th May 2007

Niamh had a fabulous holiday in Florida Disney World. It was a well earned rest for us all. We met all the princesses and had breakfast with them. We also went swimming with dolphins which Niamh loved.

We have a consultant review next week which will probably involve a change in medication and a few more tests for Niamh. We also have a CT scan booked for 14th June so think of us then. She has to have a general anaesthetic for that. We have lost count now of how many times she has been put to sleep (at least 15) and she’s always so good.

Thanks Julie and Mari for remembering us again and to all our overseas posties.

Update 11th April 2007

Niamh has had a good month and is looking forward to her visit to disney world on the 29th of April. Her vision seems stable and pretty good at the moment. She is learning everyday to make better use of her vision and amazes us daily with her abilities. We have an appointment tomorrow with a Professor from Great Ormond Street who is visiting Wales and is reviewing Niamh’s case. We also have a check up with the ophthalmologist this week.

Thank you to Julie and Mari for your lovely cards and thank you so much to Corrine for the fabulous gifts from the USA, the girls loved them.

Update 1st March 2007

Niamh is doing well at the moment; she has loved getting her post. She is going on holiday in April to Disney Land Florida.

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Nathan H

14 June 2012

Story written 2004

Nathan and his brothers were diagnosed with X-linked Lymphoproliferative Syndrome (XLP) back in November 2003 after suffering from acute anaemia.

The only cure is a bone marrow transplant which Nathan is due to have in 2005.

Nathan will then be the 3rd of the brothers to go through this – and he potentially could become the piggy back donor for Luke – the youngest of the brothers.

Nathan had lymphoma cancer when he was just 3 and was not expected to pull through but miraculously did and only spent one night in intensive care. It was this episode that first alerted the doctors to the serious problem that we subsequently found out that all 4 boys suffer from – although it took us almost 7 years to get there.

Nathan is the peace maker in the house. Although small for his age he definitely holds his own both at school and home – and he is a real charmer and future lady killer. He has an excellent sense of humour, but is also very determined which we believe is born out of his experiences of life. We are confident that he will end up on the stage one day.

Update 20th February 2008

We sat down last night over tea and talked about the wonderful support we have had from you guys over the last 4 years. There was agreement that as Joshua, Nathan and Daniel are so well now that they should move on to the ‘Moved On’ status. It would be good to keep Luke on for a few more months – he remains well but still a good way to go.

Sincerely thanks for your support.

Update 20th September 2007

Nathan is also very well and importantly, clearly growing again. Shortly we will be having meetings at his school to choose his GCSE options…

Update 4th June 2007

Tomorrow Nathan will travel up to Great Ormond Street Hospital in London with me and on Wednesday morning he will donate some of his own bone marrow to save the life of his brother.

Update 28th April 2007

About 10 days ago we took Nathan and Luke up to GOSH for a standard day of tests as Luke is due his BMT in 2 or 3 weeks time and Nathan is his donor.

This Sunday should be a wonderful day (all of the Hartleys will be there) as we have the first XLP RT Triathlon. We have 27 teams battling it out over a 3.5 mile run, 16 mile cycle ride and a 0.5 mile swim!

Update 17th January 2007

Luke is now booked in for his bone marrow transplant in the middle of March. The big news however is that Nathan will be his donor. The good folks at Great Ormond Street Hospital learnt last week that the donor we were expecting to use is now no longer available – we know no more than this. The consultants at GOSH are ‘not worried’ by this and have already carried out a number of ‘piggy back’ BMT’s. Nathan is delighted that he will have the chance to save the life of his brother! Please continue to pray that the boys stay well as we approach this last hurdle.

Update 17th December 2006

Nathan came home from his BMT literally a year and a day ago. He had a few days in Southampton General in January for a small infection and has now flown through his recovery – wonderful. He has settled back into the hustle and bustle of school and became a teenager yesterday in Lapland – indeed it was Nathan’s wish to go there. He had his throat stretched around summer time and this has made a huge difference to his ability to eat – he has since put weight on and meals are not the battle they used to be. He is still small for his age and so next year we will look for further medical help if we do not see him grow.

We have literally just returned from a remarkable holiday in Lapland courtesy of the ‘Make A Wish’ foundation. The highlight for Allison and Dave was riding a team of 7 husky’s each through a snowy forest with the most amazing pink sky – breath taking and truly amazing. Dave also managed to turn a snow mobile over with Allison on the back…

Indeed with things being relatively ‘normal’ in the Hartley household we have also enjoyed a memorable trip to Disneyland Paris and a week on a farm in beautiful Devon and Dave took Joshua and Nathan camping at ‘Soul Survivor’.

Update 21st September 2006

I took Nathan up to GOSH last Sunday night and had the strange experience of staying on Fox Ward for a night – the ward where three of the boys have successfully gone through their bone marrow transplants. It was strange seeing the nursing staff and seeing the anxiety etched onto the faces of the parents there. Nathan was up to have his oesophagus stretched. For those of you who know Nathan, you will know that he over chews everything and takes an age to swallow. With recent visits to GOSH it became clear that he has a narrowing in his oesophagus and so in he went to get it ‘stretched’. For a young man of his size the size of the opening should be between 16 and 18mm. Nathan’s was only 5mm. The good news is that the ‘stretch’ was successful and it is now up at 16mm – and it was an easy stretch. He already claims to be finding it easier to swallow although his throat is a little sore following the procedure. Otherwise he remains well and we had the good news at the tail end of last week that he can now start his childhood immunizations again – the sure sign that they consider him to be successfully transplanted and engrafted.

Thanks for those of you who have sponsored Nathan and Daniel on their ‘celebration of finishing their bone marrow transplant walk’ they are now 10% of the way to their self imposed target.

Update 23rd June 2006

Nathan is also doing well. He is now off the overnight special milk feed, which is a relief to us all, and his weight is staying stable. Importantly for Nathan he now has grown 2cm since transplant – great news. The most recent bloods taken from him do show that he has a relatively high load of EBV (the glandular fever virus – which for XLP boys pre transplant is often life taking) so the hospital will continue to monitor this.

Update 15th May 2006

Nathan continues to get better and better. Now surviving full days at school and loving it! He is now just on a few medicines although still on the overnight milk feed.

Thanks for your continued support and prayers.

Update 15th April 2006

The news that we wanted – Nathan can return to school on Tuesday! His immune system has recovered sufficiently that the Dr’s from Great Ormond Street Hospital are happy for him to return.

This is really the landmark event that shows that he is now well recovered from his bone marrow transplant. Whilst it will still probably take another 18 months for his immune system to completely catch up it can now successfully defend him against most viruses. Indeed you may recall that Nathan has EBV (the glandular fever virus – this is the deadly virus for boys with XLP) well his ‘load’ has fallen from 17,000 to 6,000.

Nathan started a new school last summer and was only there for 2 weeks before going up to GOSH for his transplant. However he is really looking forward to getting back and into the swing of school life.

Update 18th March 2006

Nathan continues to do well. He is still not eating great but is now the heaviest he has ever been. His immunity is coming back strong and hope is that he will be able to return to school after Easter. This is a much faster return than either Joshua or Daniel, but primarily because he did not need to have his t-cells knocked out as he did not have EBV (the glandular fever virus – XLP boys have no immunity to this disease – for them without a transplant it is a potential life taker). Interestingly he does now have EBV, but his new immune system is holding it at low levels, and no one from the hospital seems concerned.

Update 18th February 2006

Nathan is doing fine. He is now some 130 days post transplant and is gradually eating more. Occasional bouts of sickness but overall doing very well. His blood results are now good so hopefully at the start of March the wonderful GOSH team who look after us will start to wean him off his immune suppressants…

Update 1st February 2006

We’ve just got back with Nathan from a trip to clinic at Great Ormond Street Hospital. Overall they are pleased with Nathan’s progress. Due to kidney damage (which are slowly repairing themselves) Nathan is currently not on a key medicine called Aciclovir – which amongst other things protects from herpes virus. This is a concern at the moment as his mouth has some nasty ulcers and we know the damage this can lead to. But otherwise good – his blood results are now all in the ‘normal range’ (HB, platelets, white cell count) and he remains well in himself.

Last week we feared that he had liver GVHD (Graft vs. Host Disease) coming on – but no – just the kidneys demanding to be rested. Nathan is well in himself and has actually grown 2cm’s since the start of transplant. This is great news for Nathan, we had been told that it would be unlikely that he would start growing again until a year after transplant – we are 8 months ahead of this! As Nathan is very small for his age this is wonderful news!

And for those in the UK please don’t forget to watch Songs of Praise this Sunday (BBC1 – 18:10 GMT) – it should be interesting!

Update 25th January 2006

Nathan continues to do well. His ‘bloods’ are all moving in the right direction. He still has some sickness and is heavily reliant on a milk feed to get the necessary calories in. He is still struggling to eat (Nathan has a narrow oesophagus meaning that he has to chew and chew). But he is getting on fabulously with his home tutor – a great blessing and otherwise remains well.

Update 16th January 2006

Nathan is home after 5 days of stay in hospital. It was a line infection but he is now back to normal temperatures…

This Thursday it will be the first historic milestone – 100 days post transplant.

Update 12th January 2006

Nathan is now in Southampton General with what looks like a line infection. It started on Tuesday but only reached the temperature necessary to have him admitted late last night…

We have ‘been here before’ but obviously not with Nathan. He remains good in himself although not happy with the sickness that seems to accompany the temperature spikes…

Update 1st January 2006

Nathan returned home from his bone marrow transplant on his birthday on the 15th December – it was a long but quite wonderful day. He has now been home for a whole 2 weeks and remains very well. He is on an overnight feed which makes our night times somewhat disturbed and interesting. Aside from his seizure and the damage to his kidneys (!?!) the transplant went well. Nathan remains the great charmer, full of beans and always happy to laugh. His hair is also starting to come back.

Updated 18th December 2005

It has been wonderful having Nathan back home. He has settled right back in and is enjoying good home cooking again – although is on a regular overnight feed. He is doing well and the GVHD rash has now all but disappeared.

Can I take this opportunity, a week before Christmas Day, to wish you all a peaceful Christmas. We are so grateful for the wonderful support over the last few months – it means so much!

Update 15th December 2005

Nathan is home – hallelujah!

Update 9th December 2005

I spoke to Allison at GOSH late afternoon. Nathan is doing so well that they are looking to let him come home next Thursday – 15th. This is wonderful news and well in time for Christmas. Now we do know from previous experiences that in 6 days a lot can change (Joshua was packed and we were told 12 hours before he was expected to come home that he had 2 stay for another 3 weeks!) but Nathan is definitely on the way home!

And next Thursday is of course his 12th birthday – what a fantastic present!

Update 7th December 2005

Nathan is now doing really well. Incredibly both his adenovirus load has dropped significantly and the ‘violent red’ rash has spread no further and is now fading – praise God! He is well in himself and is now spending a lot of waking time making the nurses, doctors and consultants laugh when they come in his room.

He will however definitely be in hospital for his 12th birthday which is next Thursday – 15th December. It would be great of you could inundate him with cards.

Update 30th November 2005

Nathan is in a ‘holding pattern’ at the moment. He remains well in himself but there are still a number of important issues:-

  1. The Adenovirus is still on board and the load has increased recently. The +ve signs are that his lymphocyte count has risen into the mid 0.2’s – we need it over 0.3 to see the end of this virus.
  2. But the GVHD rash is now back on his lower legs – if it spreads significantly then they will use steroids to dampen it down – which will also dampen down the lymphocytes.
  3. And Nathan now has a fungal infection in his lungs. The Dr’s do not seem particularly concerned re this as it has been spotted early and is now receiving treatment – but is it giving him some very high temperatures.

Indeed because of the temperatures Nathan actually went back to bed today – the first time for a long time. He remains in isolation but is allowed off the ward – suitably wrapped up.

So still some way to go – we had hoped that Nathan would have been home for his 12th birthday on the 15th December but this looks unlikely now. And the prospect of a second Christmas with the family divided between GOSH and Romsey is also looming!

Update 23rd November 2005

Nathan is doing very well. The GVHD rash has now all but gone, he continues to absorb his medicines well and the blood gas results suggest that his kidneys have repaired themselves. He still has the adenovirus onboard and this is now what the consultants would like to see go next. He is allowed off the ward for brief times – and so even though we are in the middle of London we have been able to daily visit sheep and goats… Thanks for all your letters, cards and gifts – they are a real boost for him.

We now have to deal with having two sons in two separate hospitals – although we have been told that Joshua should be home again shortly.

Update 11th November 2005

It’s difficult to know where to begin this one.

Firstly Nathan remains well in himself, Mr Smiley and enjoying making stuff and watching CBBC and the new Star Wars movie. He is even baking despite being nil by mouth.

But there are a number of important conflicting medical issues that need to be resolved quickly before things potentially get very serious.

  1. Nathan’s adenovirus load has increased significantly this week but is away from being ‘worrying’ as the consultant put it on ward round this morning. Whilst this is a common virus amongst children, for those that are immune suppressed it can be potentially devastating. Unfortunately the first line of defence drug used to suppress this virus has also damaged his kidneys so they have had to withdraw the drug to allow his kidneys to rest. They are now starting a second drug that should help hold the adenovirus back but without impacting his kidneys.
  2. The IV drug that caused the fit a week ago was the main drug used to suppress the emerging graft (and help prevent graft vs. host disease). This was immediately withdrawn and an oral replacement given. Unfortunately Nathan is not as yet absorbing it well enough to give good protection – the level yesterday was 45 out of a required 150. This is probably due to the damage done to the kidneys – which are now being rested and should start absorbing soon… (Quickly please).
  3. And his Graft Vs Host Disease of the skin is now over most of his body. Fortunately at this time it is not itchy. The plan here is to introduce a short course of steroids to push it back. But the steroids will hold back the graft that should also be tackling the adenovirus…

If you follow all that you will see a potential vicious cycle that we don’t want to head down.

It is important to note that Nathan remains well in himself through all this. Over the last 2 years we have tried to live ‘one day at a time’ but sometimes it seems impossible to do this. Yet we have seen sometimes great and sometimes small but significant miracles happen – I guess we need these now for Nathan.

Update 9th November 2005

On Friday last week Nathan had a fit/seizure. This was very frightening indeed and potentially very serious. The positive news is that he is now fully recovered from it – and indeed remembers nothing of it. There are no signs of any brain damage.

After a CT scan, lumber punch and MRI the team looking after Nathan are convinced that it is down to the toxicity of the main immune suppressant drug they were giving him so this has been stopped. This now leaves him open to potentially acute Graft vs. Host Disease which could be very serious indeed.

The next 48/72 hours are pretty crucial in terms of seeing whether they can replace the IV version with an oral version of the same drug. Nathan is on other immuno suppressant drugs but this is the main one.

Already he has a GVHD rash across most of his torso – which is not in itself serious but a warning of what may come.

Amongst all this we received a great CD that was simply entitled ‘peace’ – the timing could not have been better!

Please continue to pray for Nathan we need to get over and beyond this.

Update 4th November 2005

Nathan’s transplant went without a hitch. We are so unbelievably grateful for the wonderful mystery donor who has saved his life – who ever you are we are forever in your debt. He is now 100% donor engrafted and starting to produce some of his own white cells. And strangely any time now his blood group will change as the donor had a different blood type to Nathan… Up to yesterday afternoon he was doing very well with sickness – but he was very sick yesterday afternoon – a real shame as he had been doing so well.

Update 24th October 2005

I (Ian-family friend) have just had a brief telephone discussion with David and he asked me to post a brief update. Nathan has had his transplant and is doing well and has started the process of recovery. Joshua is improving and it is hoped although still has some way to go before he will be able to return home. Unfortunately Daniel has broken his wrist and now has a lovely red plaster on his arm! Please pray for the family, especially both parents as they are finding it a particularly stressful time.

Update 5th October 2005

Nathan is doing very well. He has settled well into hospital life and is taking it all in his stride. He has amazed us by quickly making the required 1.5 litres of fluid intake, eating reasonably well and managing his teeth (toothpaste and vile mouth wash – 4 times a day). No sickness to date but we know that it is very early days (day 3 of chemo today).

Update 30th September 2005

Nathan is doing OK up at GOSH. He has now had his two pre transplant operations and is doing fine. The first was quite painful as they had to stretch his oesophagus to get the probe down – but both were successful. Allison has been with him this week and I go up for my ‘tour of duty’ starting tomorrow. He is due to start his chemotherapy on Monday.

Update 27th September 2005

Nathan finally went in today to have the two pre operations before he starts his transplant conditioning proper next week. He was very positive and relaxed…

A few folks have asked for a photo – particularly with his short hair (none school regulation) – his hair should fall out in about 3 weeks time.

Update 25th September 2005

It all starts again tomorrow. There was a last minute cancellation for Nathan’s PEG operation last week so he will go up tomorrow (Monday) afternoon to have the PEG put in Tuesday. It is likely that he will then stay in (he may be able to sneak a day at home) before having his central line operation on Friday. In eight days time he starts the chemotherapy before the actual bone marrow transplant which should be on Wednesday 12th October. Nathan is very well going in to transplant and actually looking forward to it! He is having a ‘skin head’ hair cut this afternoon in preparation (I don’t want to go through the shaving of the
head that I had to with Daniel) and is very ‘up for it’.

Update 19th September 2005

The countdown is very much on for Nathan going in for his bone marrow transplant. We had the final green light last Friday and this Thursday (22nd) I will be accompanying Nathan to GOSH for his PEG (tube that goes straight into his stomach for easy administering medicines, food etc) to go in. And on the 29th we go up to start the pre treatment proper and chemotherapy. The expected date of transplant is Wednesday 12th October.

We go into this not complacent. A lot of folks seem to assume that as we have a good match, and that Joshua and Daniel are home cured, that this is ‘just production’. Two weeks ago we were reminded by the consultant of the significant risks that a BMT brings – but as it stands today far better odds than not going through…

Update 3rd September 2005

Nathan had a great day at his new secondary school – winning many new friends.

And for those who can, we will be featured on BBC Breakfast News this Monday morning – it was recorded yesterday so we don’t know what time!

Update 24th August 2005

We now have a confirmed date for Nathan to go up to Great Ormond Street Hospital for his transplant – the end of September, just 4 short weeks away. This may move out slightly due to availability of beds. It was sobering again to go through the procedure with the consultant again today – and to be told the % changes of all being well. Nathan remains well and has no fear of the forthcoming transplant.

Update 29th July 2005

This Sunday both Joshua and Nathan are going ‘Over The Wall’ for a week at a special camp which they are looking forward to.

Update 8th July 2005

Nathan and Luke remain well – Nathan is now due to go to transplant at the earliest in September. So hopefully he should be able to start his new senior/secondary school at the start of September – if only for a few weeks.

Update 11th June 2005

Nathan and Luke remain well. And Mum and Dad actually managed their first evening out on their own for well over a year. It was a little strange (but very nice as well).

Update 24th April 2005

The knock on effect of Daniel being in hospital (see his page) is that it is now unlikely that we will have Daniel well enough for Nathan to go up for his transplant in mid June – so this is likely to be pushed out yet again. Both Nathan and Luke remain well (and EBV free).

Update 18th March 2005

Nathan’s forthcoming transplant has been put back further to the middle of June. This is because there is a strong chance of a second donor being found and this would help us in terms of Luke’s transplant. At the moment we have one wonderful mystery donor who is a good match for both Nathan and Luke (the boys are identical twins apart from being born 6 years apart). When the ‘definite’ donor gives stem cells if there are not enough for both Nathan and Luke (they would freeze some for Luke) then we would have to wait 12 months before going through the process with the same donor again. If we have confirmed that there is a second donor then Nathan can have all the stem cells from the first donor… Plus it gives us another month to ensure that Daniel is good…

So the roller coaster ride continues.

Update 7th March 2005

Nathan is due to go in mid May now for his transplant.

Update 7th January 2005

Nathan remains well. It is planned at the moment that he will go in for his transplant around the end of April – this may be pushed back.

Update 31st December 2004

The elves and secret Santa’s went down very well in our household(s).

Daniel had a great day at GOSH opening presents and now has more than enough activities to keep him set up before returning home – hopefully in around 2 weeks time.

And Joshua, Nathan and Luke were also really blessed by the torrent of gifts…

We do have some photos and will send on to the elf’s ‘soon’ – with one parent at GOSH and the other at home we are not the best co-ordinated at the moment.

But sincerely ‘thank you’.

Update 13th December 2004

Next Friday we take Nathan and Luke up to GOSH for their regular 6 month clinic so they should be able to see Daniel then. We will be talking dates for the next one…

And speaking of Nathan he will be 11 this Wednesday. It seems amazing that it was around 8 years ago that Nathan nearly died of a b cell lymphoma – and that at this time God gave him back to us…

Update 23rd November 2004

Yesterday afternoon Nathan and his parents, had the joy of joining the Anthony Nolan Trust for their 30th Birthday celebration. They were the first donor registry worldwide and have inspired all of the others. It was a truly emotional time and I had to give a small address after watching a video of the boys. We then watched with tears flowing as a young man met with the police officer who was his donor 5 years ago – the kindness of strangers…

Update 29th September 2004

Those of you following our story will be very aware that the 3 most frightening letters for us are E B V… this is the glandular fever virus that the boys have no immunity to – and which can cause death for the boys.

A couple of weeks ago Nathan was diagnosed with it – although it was at the lowest level detectable. Last Thursday new bloods were taken again, the day that he was off school ill (first time in 7 years!). So we assumed the worst that the load would be much higher.

He is now EBV free.

The wonderful medical folks put it down to a ‘blip’ – as Christians we say ‘thank you Jesus’ … (and thank you for those that have prayed for him).

Update 28th September 2004

Nathan is back at school and seems 100%. We are still awaiting his EBV results and what action they intend to take if any.

Update 24th September 2004

Nathan unfortunately now has EBV on board. A routine blood test last week picked it up, as there had been no sign of glandular fever. It is at the very lowest level (50,000 load) detectable – but it is on board. Unfortunately he was quite unwell today so had his first day ill off school for 7 years (since his lymphoma). If the symptoms persist he will also go into our local hospital tomorrow (Friday) although he seems well this evening. New bloods have been taken to see if the EBV has progressed and to decide what action is necessary.

Josh is also in hospital with GHVD and Daniel is undergoing treatment at GOSH

So, it’s a real battle in the Hartley household at the moment – I think we feel that we can fight one battle at a time but not two or three together … welcome your prayers as always.

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