Dominic B

21 March 2011

Story written 2010

Dominic has had a tough life right from the start. He suffered from severe reflux which could not be controlled by medication and led to his refusal to eat. Eventually he was so dangerously underweight that they started tube feeds. He also suffered from aspiration pneumonia which has threatened his life on many occasions and led to him being ventilated, septic and with acute respiratory distress syndrome. He was given a very slim chance of surviving it and it was a traumatic time for everyone, including his brother and sister, who had to come and say their goodbyes. Thankfully he proved them all wrong and left intensive care only to spend the next 5 months in hospital recovering.

By the age of 2 Dominic had spent most of his life in hospital. He was nil by mouth due to an unsafe swallow and fed by a tube. He could barely sit, let alone run round like peers, and had severe muscle weakness. He was so used to spending his life in a tiny room with only me for company until someone came into his room to do something horrible to him that he became terrified of everyone. Even when we eventually came home he spent most of his time crying, and if anyone approached him smiling, he would automatically assume they were going to cause him pain, as that is just what the doctors and nurses used to do before they hurt him.

His gross motor skills were like that of a 6 month old and he wouldn’t utter a sound except to cry. Though he had started using Makaton sign language with me. Two muscle biopsies showed nothing conclusive but an EMG showed myopathy, so he was given the loose diagnosis of congenital myopathy.

Dominic got used to life at home, albeit still with huge anxieties when not with me or his siblings. Unfortunately any progress was lost last year when a portion of his bowel kinked which ended up with another long stay in hospital, a lot of pain and a huge operation to recover from.

Since his discharge our focus has been on trying to undo some of the damage that his condition and hospital has done to his confidence. With as much love and laughter as possible, I’ve slowly managed to pull this scared little boy out of his shell and to everyone’s amazement he started to talk, and laugh and play. Six months later I have a little boy with a wicked since of humour, despite the constant stomach pains, the dependence he has on me for all his care, and the medical regime that he endures to try and keep him at home.

He still gets very anxious outside our home but I hope he’s slowly learning that the world isn’t such a scary place.

Update 19th January 2015

After a lot of deliberating I think it’s time to let another family benefit from Post Pals. The children are that bit older and Dominic spends less time in hospital than he used to and Post Pals used to make such a difference to all the children that I want another family to experience it too. I never want the children to get the the point where they take other people’s kindness and generosity for granted. All of our regular writers are like old friends that we talk about as though we know them and we will be very sad to say goodbye, but happy that another family can find out the true kindness of strangers.

I cannot thank everyone that has ever written to us or sent us things enough. You are doing such a special thing and it has made a hugely positive difference to our lives at some of our darkest moments. I owe so much to Viks and all the amazing team that make Post Pals such a success. I feel so very sad saying goodbye, but know how lucky I am that it’s for all the right reasons. I wish you all happiness and health and thank you once again for making my children smile when there seemed to be so little for them to smile about.

Update 29th August 2014

In so many ways Dominic is doing wonderfully, so it is such a shame that the abdominal pain has come back with a vengeance and it now dominates a large part of his life. We know that he has a recurring abscess that keeps forming on an old operation scar, but aren’t sure why, and in the last month he has been in almost constant pain. He still manages to smile however, and we’re doing our best to just keep marching on with life. Getting away this summer was not without incident, but we managed it, which was just what we needed after what has been a pretty horrendous year so far. None of us were sad to leave our building site of a house behind (it’s been a building site for nearly 2 years thanks to cowboy builders doing the disabled adaptations).

In other news Elliot is moving on to Secondary school, and would like to thank everyone for all their lovely post, but he feels that he is taking away from younger children who need it more. However he would still be delighted to receive any books that anyone has read and thinks he would like (he reads well above his age), or science magazines etc that people that have finished with. He has a lot of challenges ahead which we are mindful of. In the last year we have found out so much about him that explains a lot of his difficulties over the past few years. Elliot has now been diagnosed with Asperger’s, ADHD, dyspraxia, chronic tic disorder and an underlying neuromuscular condition. I am immensely lucky that he is such a bright, sweet and caring boy though, and has made us all so immensely proud with how remarkably well he has coped with this complicated, confusing world that so many of us without any additional extras often struggle to interpret.

Lilia is still my unassuming flower in the middle of the two complicated boys. As always she is loving, affectionate and cheerful despite it all, but might need some extra big smiles through the post when Dominic goes back into hospital in the second week of September. She misses her mummy the most and finds it extraordinarily difficult.

As always thank you to everyone who sends post. We are shamefully bad at being able to reply to people individually, but please don’t think it’s because we’re not grateful. Once we know what ward Dominic is being admitted to we will let Post Pals know. The post arriving in hospital is his highlight of the day, and the joy it brings is infectious.

Update 1st May 2014

With the exception of a reoccurring abscess and continuing abdominal pain, Dominic has had a good run of health recently. This has meant that he can go to school regularly and has started settling back down again after his recent run of admissions.

Elliot has had a more difficult time. I can’t remember if I mentioned that he has had an Asperger’s diagnosis. That along with his age can be a very difficult combination. As always, Lilia puts up with being in the middle of them both with (relative) good humour.

Thank you for the letters this month and a special thank you to our regular writers. We love hearing from you all.

Update 28th January 2014

We had a really rubbish end of year with Dominic. Lots of things started going wrong and it seemed that with every week that he was in hospital we got another piece of bad news. It didn’t help that new teams started getting involved who lacked the courtesy to consult me before making decisions or actually talk to Dominic. I made the decision before Christmas that staying in hospital was no longer in his best interests and we left.

It meant that we got to spend Christmas at home and even though it was a bit of a blur it was so, so nice to be all together. Nothing could have prepared us for the amazing cards and presents that arrived throughout December for all the children though. We saved the Christmas presents and the children opened them on Christmas morning to squeals of delight. The cards stretched around the room as well.

It was obviously quite a stressful time coming home from hospital after another long stretch, and the cards, letters and parcels arriving from all over the world forced me to stop feeling sad and brought us warmth and happiness from so many different people. Thank you so much to everyone who took the time to write and send some Christmas spirit. Thank you especially to those people who remember Elliot and Lilia.

Unfortunately Dominic is going back into Great Ormond Street on Monday, it’s a prospect neither of us are looking forward to as you can imagine.

Update 12th November 2013

Dominic is now home and not expected to be admitted to the hospital again.

Update 13th November 2013

I am very sad to say that Dominic is still in hospital (Squirrel Ward in Great Ormond Street Hospital). It must be about 9 weeks now. At the moment we seem to be finding problem after problem which means I’m starting to feel a bit panicky. When it was just the large gastric losses that he gets after every surgery I was fine, but now he has problems with his bones and his blood sugar is really unstable. I have to watch him like a hawk and it has completely restricted what I can do as I can’t leave him at all (unless I can get someone to watch him for me). This means that Lilia and Elliot are rarely getting to see me and my home plan is out the window. We’re trying a tiny amount of growth hormone to try and help stabilise the blood sugar and help his bones, but it’s important that we don’t make him grow in the process as his muscle tone is so poor that he is highly likely to get scoliosis. To be able to do that we have to get funding though, and apparently the area that I live is so renowned for turning people down that the hospital won’t start him on it until it has been approved. He is getting less and less stable though, so today I begged. Fingers crossed.

Dominic had a lovely flurry of cards and letters for his birthday which really delighted him and we decorated the whole room with them, so thank you everyone for sending them. He hasn’t really received anything since though and I know would love to hear from you if you have a second. Equally, Lilia and Elliot are probably suffering the most at the moment, having been so amazingly strong I know Lilia now is really feeling down about it all. She smiles and says she’s fine, but sends me messages on her iPod that tell me a whole other story. If you think you can cheer her or Elliot up, I would be eternally grateful. Thanks as always.

Update 28th September 2013

What a roller coaster few months it has been. I had huge ambitions this summer, to finally get the children on a plane. They had been begging for the last few years and I just didn’t think the stress of going through security and taking all the medical equipment would be worth it, but having watched a few other families succeed with far more complicated children than mine, I bit the bullet this year and booked to go to Italy. Rather sadly, Italy was chosen as it’s his surgeon’s homeland, so there would be no language barrier if he had to have emergency surgery. As it turns out, a week before we were due to go his surgeon decided on the spot that he needed surgery, as soon as possible. I guess you just don’t notice how bad things have got when you’re dealing with it every day. We did still go away and it was the best decision, not only because Dominic was in so much pain while we were away that both he and I were certain that the surgery was the only option by the time we came back and secondly because a few days after we got back Dominic had another large bowel operation and I have seen very little of my lovely family since.

The operation cut out all the bowel that had previously been fashioned into a feeding tube (roux en-y jejunostomy). It was redone and then a new stoma was made. There were no guarantees that the pain that has haunted him since his 8 month stay in 2010-2011 would be cured by this, so everyone’s fingers were just crossed. This stay did not start well at all, the epidural failed so Dominic woke up in absolute agony and it took them hours to control the pain (every time they gave him morphine his breathing would slow right down so they would stop and then he would be in agony). On top of this, they forgot to put a catheter in while he was asleep. They then tried while he was awake with a tube that was too big. There was lots of blood and I have never seen Dominic so scared in my life and he was screaming in agony. I thought he would be traumatised for life, but a week or so later, now everything has healed, he has relaxed a little bit.

The surgery, in itself, went very well. The recovery is… well… slow. Dominic has his stomach on free drainage all the time, and at the moment they are managing to feed him 900mls into his bowel and he is losing over 800mls out of his stomach. I guess we shouldn’t be surprised that last night I got the disappointing news that the feed was going to be turned right down again as he’s obviously not ready. Frustratingly they have isolated him as well based on stool samples taken in 2011, so we are stuck in the room, and now he is going back on three machines again, we can’t even leave the room to go for a walk outside. I hope we are out of here soon, or I might just go mad.

So we will spend Dominic’s birthday trapped in his room in hospital. I have done everything to try and make it as special as possible, but it just isn’t the same. He has convinced the doctors and nurses to sing him happy birthday though, so come Monday we’ll find out how good they are at singing!

Elliot and Lilia are coping ok. Elliot’s behaviour has been very difficult recently, but with me not there, there is not much anyone can do but firefight until the present situation is resolved.

And finally to finish on a positive note, so far the surgery seems to have worked, there has been none of the awful pain he was having since. Long may it continue!

Thank you for all the post, I’m trying to post pictures on FB as often as possible to show people what a huge difference it make.

Update 5th June 2013

Dominic has been very up and down. There have been huge positives, like seeing how happy he was when his power wheelchair had the speed turned up, but worrying developments too. It seems like he is unhappy, really unhappy at school. Now I wouldn’t believe it for a second if I based it only on the smiling face I see whenever I’m in, but the tears, not wanting to go, not talking about any children in his class and some of the things he’s been saying (like people only like him because he’s in a wheelchair) have got me worried. Everyone wants to do the very best for him, but none of us feel equipped to know where to start.

And on the flip side of the coin Elliot has thrown us a curved ball. He was referred to Great Ormond Street by our local psychologist who thought he might have Tourettes syndrome. He ticks, but not really badly, but it was his behaviour that triggered her concern. The specialist Tourettes clinic think he has Aspergers however. Having just watched the latest Star Trek film which has a scene where spock is being over literal in his responses and proves so frustrating he is told to leave the room, both Roger and I turned to each other and said “Elliot”, because it was an exact replay of the sort of scene that would happen at home. I’ll write more about it on the blog, but for the time being we’re just waiting for the autism department to see him.

Thankfully Lilia seems alright… bit moody, but generally still her same happy self.

Thank goodness for Post Pals… keeps us sane! We’ve had some especially lovely letters, and thank you so, so much to the people who have written such kind things to me after reading the blog. I treasure them all. The children are sent some wonderful things too, in fact Lilia is taking a beautiful nature book she received into school tomorrow, she’s bookmarked all the pages she wants to show her class. And Bertie, your letter is sat right next to me. I feel honoured that your first ever letter was written to Dominic, he’s not very keen on writing, so it has sat waiting for me to find a minute to reply on his behalf. Apologies that it is taking me so long.

Update 1st April 2013

Life seems to have gone from hectic to just stupidly busy at the moment, but in a good way. Dominic is managing to go to school most days and is doing well. I’ve noticed a big change in him since he’s transitioned over to a power chair during his school day. He sits much better (as it’s a fully supportive seat) and doesn’t use up nearly as much energy. He’s a master at moving it, and the first time he came over to me when I arrived to pick him up I nearly cried. Most kids run up to their parents and the parents think nothing of it, but normally Dominic just stays put, so it was a very special moment.

Unfortunately the power chair is stuck at school as the house stiiiiiiilllllllllll hasn’t been adapted. Five years worth of bureaucracy and I’m utterly, completely fed up. It really hits home how restrictive it is when you see him moving around independently. He should have that at home as well. I have been told that all the paperwork bits are pretty much done now, but I’m not holding my breath. The other issue is the car. I drive a big car anyway to fit his manual chair in, but I would need a van to get the power chair in. Vans cost a ridiculous amount of money, so for the time being, the chair is staying in school and I’ll continue to lift him everywhere else!

Health wise he is doing ok, this coming month my focus is going to be on Elliot who is going up to GOSH for a lot of testing. I’m not sure how quickly I’ll hear anything or even if it will change anything, but it could well explain a few things. Sorry to be so mysterious!

Thanks, as always, for the amazing letters and cards and gifts that keep arriving. The kids have been making a concerted effort to write back, so I hope a few of you have received something. Apologies if you haven’t, it doesn’t mean that we are any less grateful. Just a little mention for a lovely 7 year old boy called Sam… Sam, your letter was passed around to everyone. We all adored it, probably because it was so wonderfully honest about what really matters when you’re 7. Dominic, although only 6 (and a half) totally agreed with your sentiments about brothers.

Update 29th January 2013

The last few months have been pretty tough for Dominic, although thankfully I’m starting to get used to the way that the abdominal pains affect him and have resigned myself to the fact that when things are really bad, the very best thing for him is to have as much pain relief as is safe and to rest and sleep. He had his MRI, and because of the unusual area of bowel that they saw when they reviewed the pictures he then went for an ultrasound. The significance of the ultrasound, it seems, was that the unusual area was no longer there. As always with Dominic there are no absolutes, so when we went to see the surgeons we were presented with two options, major surgery or doing nothing. I chose doing nothing as there are no guarantees that the surgery will prevent the same happening again down the line, and it seems like too much of a risk. I have been plagued since that appointment with both sadness and guilt, especially when the pain is bad, that I have chosen this for him. Thankfully Dominic is far wiser than I am, and sees the pain as a mere inconvenience in his otherwise happy life.

The post that we have received has, undoubtedly, been the highlight of the children’s day. We have been making an effort to reply to people, but do forgive us if we don’t always manage it. I was delighted to be able to track down one of the people who sent us things on twitter so we could say thank you, she (Kay) in turn told me about her penguin amnesty for Post Pals and I have to say I was moved beyond words that people would make such an effort for children that they had never met. So thank you, once again, for reminding me that no matter how terrible things can seem, there are always smiles to be found.

Update 5th November 2012

Things have been hectic in our house recently. This time of year we celebrate not one, not two, but three birthdays, so I am now the proud mother of a 6 year old, an 8 year old and a 10 year old, eek! Dominic wasn’t really well enough to do much on his actual birthday (see my blog for a photo-video of some of the surprises he did get) but he did manage to go to the cinema to see Madagascar 3 with a friend from school as a ‘party’ of sorts a full month after his actual birthday. He is of course now mad on Madagascar as he enjoyed the film so much. Lilia had her party on Halloween, so the house was filled with little witches and I took them all trick or treating, which was wet, but good fun. A big thumbs up for all the Halloween project bits we received which took pride of place at Lilia’s party. Dominic joined in too (dressed as a vampire, so not too much make up was required as he is generally ghostly white anyway) and loved asking ‘trick or treat?’ even though he’s not currently allowed to taste any food at all. Elliot sensibly escaped to a boys party for the night.

Dominic has had a short respite from the horrible abdominal pains he’s been having, although, unfortunately they have recently returned. He’ll be having an MRI of his abdomen next week, and although I don’t think anyone is expecting to find the cause that easily, this is Dominic after all! He’ll have to be extraordinarily brave as they are going to do it awake with no sedative (it’s the safest option for him) and it’s going to be a long procedure (over an hour without being able to move even a tiny bit). Can’t say I’m looking forward to that appointment!

He also has lots of other appointments coming up, and hopefully I’ll get some help finding a way to seat him more comfortably (his bum is so skinny at the moment he’s getting sore just from sitting on the sofa and has to be on memory foam at all times) and getting him having tastes of food again.

Thanks, as always, to everyone who takes the time to contact us, especially those who sent birthday cards and presents to the children and made them feel really special. Extra special thanks go to Leona and Kati Koskinen for managing to make everyone feel thought of.

Update 28th September 2012

After having had a really positive first year in school, unfortunately in the months leading up to the summer holidays Dominic noticeably deteriorated. He started having crippling abdominal pain and slowly our lives started becoming dictated by his health again. We had various visits to the surgeons over the months and I tried everything to avoid Dominic having to have yet more abdominal surgery, however as the school year came to an end we were pretty much trapped in the house, as moving Dominic anywhere caused him so much pain. The surgeon and I agreed that holding off was no longer the right thing to do and we cut our holiday short and took him to Great Ormond street for exploratory surgery. They found a big loop of bowel that was stuck to both sides of his abdomen which fit all his symptoms. They took it down and repaired the bowel and everyone was exceedingly hopeful about the future. The gastro team had taken the opportunity to take a look at his large bowel while he was under anaesthetic. Unfortunately they found that it was inflamed and it explained some of the bleeding that he’d had. As a result all the tastes of food that he loved (with an obsession that would put any food lover to shame) have had to stop. Dominic obsessed about the times in the day that he was allowed to lick a lolly and this is a hugely upsetting thing to happen. He has been amazing about it though, only crying once at the thought of people eating his birthday cake when he couldn’t even taste it.

He remains philosophical about it all with wisdom well beyond his (almost 6) years and I’m in awe of his coping skills. Unfortunately, it’s not just the not eating that he’s currently coping with…

It very quickly became apparent that there was still something wrong a few days after the surgery. He started looking very unwell and screaming in pain. A week or so later with no one knowing what to do and no sign of improvement, I made the decision to bring him home, hoping that time and the distraction of family life would help. As things stand he is spending a lot of his life on the sofa, under a blanket. His pain is intermittent and helped a lot by the strong painkillers he came home with. I’m trying to get him into school as often as possible and home schooling him when he’s just not well enough. Both of us are exhausted as he is generally very unsettled during the night, but he is undoubtedly better in his own house rather than living on a ward for months while they try and figure out what to do next.

We are currently waiting for an MRI to give the doctors more of a clue about what is going on and trying to focus on his birthday on Sunday. We’re not sure yet if he’ll manage to do anything for his birthday as he might not be up to it, but it will be an Avengers themed day, and we’ll try our best to bring the party to him if he can’t go out anywhere.

All the post that we have received has undoubtedly carried us through the difficult last few months. Lilia has produced some beautiful pictures and crafts thanks to some of the lovely activities that have been sent, Elliot has done some gross magic tricks for us thanks to a gift and Dominic has been delighted by the fabulous postcards and gifts that arrive. Elliot and Lilia appreciate the letters addressed to them so much, even if they don’t always manage to write back, the anticipation and delight when the post comes lifts the mood for the rest of the day.

It’s a busy birthday month coming up with Dominic’s birthday at the end of September and Elliot’s and then Lilia’s in October. I’ll do everything I can to try and make sure their birthdays and (hopefully) birthday parties are unaffected by current circumstances. Thank you in advance to everyone who takes the time to send birthday cards.

Just as a little aside, with Halloween coming up especially, please, please don’t send Dominic any food related things, he’s being so brave about it, I’d hate to see him disappointed however wonderful the intention. Also Elliot and Lilia are both vegetarian and so all sweets with gelatine in they can’t eat (for example chewy sweets like Haribo anything with marshmallows in it etc). Lilia wants to have her party on Halloween, so this year we’re trying to make it extra fun. She is going to be a gothic bride, Elliot is going to be a ghostly escaped convict and with Dominic I thought we’d put his deathly pallor to good use and dress him up as a vampire.

Once life gives me a chance I hope to go back to updating my blog regularly, so if you enjoy following what we’re up to come and say hello, I love hearing from post pals friends.

Thank you once again from all of us, to all of you wonderful people out there.

Update 8th April 2012

Thank goodness for school holidays! All the children have been exhausted so the Easter break has been much anticipated, although we’re all disappointed that the weather didn’t hold out. For the first time, and only thanks to a friend of mine, I have managed to find an Easter activity that Dominic can join in too. He and Elliot and Lilia joined an inclusive theatre group for the morning which was fabulous (even if I had to stay to do all of Dominic’s medical care).

Talking of medical care, Dominic has been back in hospital briefly for testing, although after being starved and stabbed they didn’t have enough nurses to complete the test (he would have had to have a one to one nurse to be safe while they were completing it), so we’ll be going back in again next month which is a pain. Other than that we have a very important appointment coming up where we’ll be finding out some important test results. I post regularly on my blog with pictures and videos of the children so do stop by and say hello.

We have been getting some fabulous letters and the children (even my writing phobic oldest) have been replying to a few of them when they are able. Thank you as always for taking the time to make them smile.

Update 27th March 2012

It has been a while since I updated the actual Post Pals site rather than just the blog, for which I apologise.

All the children are doing well in their own ways. There have been a lot of appointments for all three of them, and I hope you’ll forgive my reticence in going into any more details for now until we actually know what is going on.

Dominic has amazed everyone with how well he is doing in school, and has caught up with his peers with everything except writing which is still difficult for him because of the weakness in his hands. He even managed to complete the sport relief mile with his class in his power chair. It took him a long time, but his class cheered him round which was testament to how accepted he is.

He’s been unwell recently and is going into Great Ormond Street briefly again in a couple of days. Life is undeniably exhausting for him, but he copes amazingly. I’m trying to give Elliot and Lilia as normal a life as possible, but trying to juggle everything is interesting to say the least. We are still waiting for the house adaptations to go ahead (goodness knows how many years it’s been now), but we are at least at the point of having a builder picked out. At the moment Dominic is pretty much stuck in one room unless I carry him, so both he, and my poor shoulder, are hoping that it might happen this year (although I was promised it would be finished by last Christmas at the very latest, so I’m not holding my breath).

We still haven’t managed to sort out any suitable supportive chair for the long days at school, and so the general consensus is that he should be in a power chair rather than a manual wheelchair at school. This seems like a huge backwards step and it’s taking me a long time to come to terms with it, but everyone is worried about his spine so I guess it’s unavoidable.

That’s it for now. Sorry about the patchy and slightly vague update, I will post fully when I know, and have come to terms with, whatever is going on with all three of them.

Thanks for the lovely letters and gifts that continue to arrive for the children. I hope you have been catching my thank yous on Post Pals Facebook page, which is where I generally post them.

Update 2nd November 2011

Huge thanks to everyone who has continued to send post despite my prolonged silence. The lack of communication has, in some ways, been for wonderful reasons. This summer is the first one that Dominic and I have managed to not be in hospital, so we made good use of it and went away with everyone first to a children’s music festival, and then to France for a week. Our trip to France was more wonderful than I could have imagined and I think of it very fondly. I couldn’t get any reception on my phone when I was there, which meant no one was hassling us and we actually got to be a family, just us, enjoying each other’s company.

It was fabulous for all the children of course, such a novelty doing things that regular families do. It took a ridiculous amount of planning and packing, but it was so worth it, and gave Dominic, especially, a real sense of family and security before he embarked on a huge milestone for all of us… starting school! He’s at the same school as Elliot and Lilia who are so proud to be seen with him in the playground. At the moment he’s a bit of a celebrity and is causing disruption every assembly when everyone wants to say goodbye to him when they’re meant to be lined up quietly, but I’m sure he’ll become a regular school boy soon enough. At first he found it very difficult to cope with the attention, but thanks to the weeks and weeks of preparation before school broke up for the summer, he seems to have settled in far better than anyone thought possible and, despite his protests otherwise, is actually really enjoying himself. He’s really, really exhausted by the end of the week which causes a few blips in his ability to cope with things, but, with the exception of hospital visits and illness, he is managing full days 5 days a week, which is testament to what a superstar he is. I recently started leaving him with his one-to-ones at the school, which again he, and they, are coping with very well.

I of course miss him like crazy, but I’m so busy that the day flies and I haven’t even made a dent in the towering pile of papers that have been put on hold for so long. In many ways things have been wonderful and the children have been more settled and happy than they have been for a long time.

Health wise Dominic has been relatively stable. I can do most things that he needs at home, so we have avoided hospital as far as possible. He has been having some pains in his legs which have been difficult to cope with as we have no idea what is causing it, and his same stomach problems persist, made worse by the school bugs that are of course flying around.

However, there have been a few reasons for my prolonged absence, so forgive me if I fall silent again, I don’t intend to, but sometimes hiding away is just the only way to stay sane.

Also, and this is rather harder to talk about as I’m still trying to work out what it means for us as a family, Lilia has been diagnosed with the same condition as Dominic… whatever that condition is. It obviously means that we have no idea of the implications at the moment; we just know that she has the same problems as he does with his muscles, they are just milder. They are currently getting Elliot referred to the same neuromuscular team. This could be devastating or relatively insignificant, no one really knows, but it does make the lack of a diagnosis slightly harder to bear.

Thank you to everyone who continues to write, especially Leona who writes regularly to Lilia and is much talked about and loved within our family despite our never having met. The arrival of the letters is such an anticipated event, and brings so much happiness. I know Elliot would appreciate some post of his own if anyone knows any good jokes, interesting (but appropriate) websites or fascinating facts. We keep every letter, and really appreciate all the thought and work that goes into them. There are some amazingly talented card makers out there! Thank you all for still thinking of us.

Update 29th June 2011

Dominic, in many ways, has amazed us all. He’s been going to Nursery pretty regularly and is learning to trust the staff. Trusting adults is a difficult one for Dominic still, he’s had the rug pulled a few times when people come into his life, then, for reasons only known to them, decide to remove themselves from it. It chips away at any feeling of security that we’ve gained since his discharge, and has a knock on effect on his pica which is so dangerous I have to be so, so careful not to leave him unsupervised.

He missed all of the other Nursery rites of passage such as the Nativity play, so I’m going to do everything that I can to make sure he makes it to the sports day. Having a slightly funky body doesn’t stop him being just as competitive as the other children, so I hope his one to one wears her running shoes as he wants the wheelchair crossing the line first. At least it will be the waggling happy feet that actually cross the line before anything, which is as good as running feet really.

Medically he’s been about as stable as I can manage. I’ve only had a few heart stopping moments this month, so it counts as a good month in our household. The hotter weather is starting to take its toll though and I’m going to have to watch him very carefully. Energy wise he’s really struggling. Nursery is hard work and he has very little left at the end of the day, and I don’t think the heat will help that much.

We have had yet more diagnoses added recently, with problems with his hips and bones being identified. I’ll find out more about that at the end of the month when we see the orthopaedic surgeon (yet another consultant added to our long list) for the first time.

We’re also going to Oxford to see the Congenital Myasthenia experts. We know that there is something wrong with Dominic’s neuromuscular junction (the bit between the nerves and the muscles) but he doesn’t fit the classic myasthenic types, so the team are going to give him the once over to see if they are willing to give him a CMS diagnosis, but with an unknown gene fault. It’s a very new and emerging field so I’m really interested to hear what they have to say.

Elliot is doing fantastically. His teacher said he’s been like a completely different child since I got home, he concentrating more, finishing his work and excelling in all his tests. Most notably they score the children’s views of themselves and their own abilities in the school as part of their assessment process. When I was in hospital with Dominic he pretty much said he was rubbish at everything. He gave the answers of a very unhappy child with very low self esteem, and this child top set for everything. He was recently reassessed, and finally talked about himself in a more positive light, even identifying strengths that he saw in himself. I’ve never been prouder.

Lilia is still her happy go lucky self, although a really defiant streak seems to have reared its head since I’ve been in hospital. I guess it’s that defiance that has been what has brought her through it all so well adjusted though, and with an emotional intelligence that belies her young age. She is having some worrying issues of her own that have prompted me to see medical advice. Lilia will be seen by Dominic’s neuromuscular consultant to properly investigate, so watch this space.

And to finish on a really positive note, we finally got planning permission to adapt the house so Dominic can have a downstairs bedroom and access the rest of the downstairs. At the moment he is unable to use the wheelchair in the house so he is confined to wherever he is put down, which must be hugely frustrating for him. He’s very patient with me when I say ‘in a minute’ for the hundredth time though. It’s been years and years of fighting to get to this point, so I’m happy, to the point of tearfulness, that the fight is almost over.

And to all our Post Pals family, thank you. You are part of our every day conversations, our regular writers are like welcoming old friends into our house to share little snippets of their lives or just to say hello, and we always love hearing from someone new.

We had the great privilege of meeting some of the people behind the computers at the Post Pals party recently. Lots of thanks and love to you all as well, you help make our lives immeasurably happier.

We received some brilliant letters and cards this month that Dominic had me read out to him, including some from a school in Switzerland. They were very much appreciated, especially the tremendous drawing of batman. The circus themed gifts were such good fun as well, so very generous and very well thought out. The kids had a lot of fun opening them and it’s kept them busy, which I’m thankful for!

Update 15th May 2011

Thank you from Elliot, Lilia and Dominic, for the lovely Easter goodies. They were utterly delighted. And some of the cards that we’ve received recently are amazing, so beautifully made. Thank you all.

Update 6th April 2011

Well March finally brought us what we had stopped believing would ever happen over the 8 long months that we were in hospital… Dominic was discharged and we finally came home.

It is unfortunate though that bed management got in the way of a proper discharge, despite months of begging to ensure that it didn’t happen, and then once we got home and the problems started arising, the lines of communication slammed shut, despite promises that they wouldn’t. So all in all his first few weeks at home have been unnecessarily frustrating, stressful and upsetting. I have somehow managed to keep him well hydrated; thank goodness his body is tolerating the haphazard approach to his medical care that I am having to fit into being a Mummy to three again. He is in a lot of pain though and it makes me so tearfully frustrated that not only was I forced into coming up with a solution to get him home with very little help, we then got caught up in hospital politics which destroyed both Dominic’s and my trust in anyone and have left us pretty much alone as the community team won’t do anything without the specialists say-so.

Thank goodness the community nurses are doing everything within their power to help and so I get the blood and urine results the day that they are taken and then attempt to get someone to listen if there seems to be a problem. At least it’s a good guess that people are reading the emails I’ve sent even if they are not replying as I’ve something that I’ve flagged up as a problem told to me on the phone a couple of days later by a different person.

To try and be slightly more positive, I have started taking Dominic to Nursery to try and get him used to a ‘normal’ life. He is doing his very best, but pain and anxiety get the better of him a lot of the time. It is so good to be home though, for both of us, and I’ve certainly settled in so much faster than I thought I would.

Elliot and Lilia don’t seem to have suffered too badly from having me back (we occasionally get homework done before its due in) and the doggies are content to have someone to potter around after in the afternoons. All our frustrations with the lack of medical care aside, life on the outside is immeasurably better than it ever was stuck in a room for 8 months and I’ve started to feel vaguely human, even if I do still feel strangely disconnected from my ‘former’ life.

Thankfully for us breakable adults, children are remarkably resilient, and I’m holding onto the fact that I have seen glimmers of the old Dominic seeping through, so hopefully, pain aside, the same cocky, smart, eccentric little boy will win out and the damage done will become a bad memory.

Thanks as always to the people who continue to think of us and write the most wonderful letters and make the most beautiful cards.

Update 17th January 2011

I’m very sorry for taking so long to update everyone on Dominic. Things have been difficult over the last couple of months and I am emotionally and physically exhausted.

Dominic, unfortunately, is still in hospital. We got to spend a miserable Christmas day at the mercy of the hospital canteen as he was having antibiotics for a central line infection which prevented us from escaping, which kind of set the tone for the start of the New Year. The good news is that he is well in himself for the most part; the bad news is that there is no talk of home yet. He is still losing too much fluid from his stomach (which isn’t working very well) to stay hydrated without IVs.

We have also fallen prey to the unstoppable machine that is hospital management. As a result life has become considerably more difficult and may have long lasting consequences for us when we do eventually get home. Obviously I can’t go into details, but I am trying to summon the energy for a fight that may involve starting a complex complaint process. It’s the last thing we need, especially as the decisions management have made are directly affecting his day to day care.

On a happier note, we were overwhelmed with the generosity of all the people who contacted us over Christmas. Thank you so much to everyone who took the time to write and send things and I’m so sorry to not be thanking everyone personally. Post Pals is a well known name on Dominic’s hospital ward now, as the staff love to see his arms and legs waggling as the post arrives. It really breaks up the day for us as he gets so excited. Elliot and Lilia open their post on the phone to me in the evening, and even though they don’t waggle quite as much, they are still so excited to see who it is from.

Hopefully there will be a happier update soon.

Update 7th November 2010

Dominic will be having yet another operation. At the moment it is looking like it will be this coming Tuesday. It’s going to be a very big and complex bowel operation and the resulting recovery time is likely to extend our stay even longer (probably through Christmas and into the New Year). The whole ward is also about to move for renovations so we will be stuck with no playroom and nowhere to store toys. Dominic is also not allowed into the activity centre so will be confined to his room. It’s obviously going to be a very, very difficult few months for everyone and any smiles will be enormously appreciated.

Update 30th October 2010

I’m very sad to say that Dominic and I are still in hospital and all plans to be home for Elliot and Lilia’s birthdays had to be abandoned as he got a line infection and his levels of pain are increasing.

We did manage to celebrate both birthdays in style though. For Elliot, with the help of all painkillers available to us, we managed to take them all to the London Eye and then to the Hard Rock Cafe before flying back to the hospital. Elliot’s day had a memorable end with a visit from London Fire Brigade after the sparklers on his cake set off the hospital’s smoke detectors. They were good humoured enough to let him have his photo taken with them, and the nurses were of course delighted to welcome them onto the ward.

Lilia’s one wish for her birthday was to have me home. Despite the consultant scaring the heebie jeebies out of me about how ill he thought Dominic was, I managed to force my legs to take me out of the hospital and onto the train. So I left Dominic in very good hands and went home for the night. Lilia didn’t sleep *at all* she was so excited to have me home. I managed to get the children off school for the day and after lots of present opening came and continued the party at the hospital with Dominic.

As for when we get to go home for good, it’s a very difficult question to answer. At the moment they are proposing another procedure (endoscopy and colonoscopy) and then probably another operation. I am terrified this won’t work as they still don’t know what is going on and why he is in such a lot of pain so often.

As always the kindness of strangers has made an unbearable situation more bearable. So many smiles have come through the post. I apologise enormously for not having replied to people, things have been rather difficult of late and I have spent little time doing anything other than focusing on the children. I really wish I could capture the joy they have when something arrives for them. Thank you, thank you, thank you… the nurses are so taken with how happy it makes Dominic that a few of them are signing up groups that they run, so the smiles will be passed on.

Update 4th October 2010

It has been a very, very difficult month, with Dominic missing the start of nursery and then starting to get excruciating pain, which he had to endure for 3 weeks until he eventually went on the emergency operating list just before his 4th birthday. When they operated they found a part of his bowel that they thought was twisting and sewed it in place. Unfortunately he has continued to be unwell, with us only seeing glimpses of my happy, foot waggling boy in-between the tired, grumpy, sweaty boy that has replaced him. He is also still getting the pains intermittently. Currently the feeds that he normally has in his jejunum have been stopped as he was losing too much bile and artificial feeding has been started (TPN). He was unwell and unhappy for a lot of his birthday despite our best efforts, so we will try again when he (eventually) gets home.

Each and every letter and card and gift have been cherished during the 11 or so weeks since we’ve been in hospital. Sometimes they really are the only time he is truly happy all day, and for that I thank each and every person who has taken the time to get in touch.

It is Elliot and Lilia’s birthdays in a couple of weeks and I would be enormously grateful for any smiles that can be sent their way.

An enormous list of thank you’s, as always. Julia and Roger, thank you for the Mr Happy card, very cheery; Isaac, Dominic had no idea it was a cricket bat (he thought it was a paddle for a boat) but I explained all about cricket and he’s better informed now! Dottie Dalmatian thank you so much for your brilliant letters and of course for sending Indy to us. Donna thank you for the great bracelets; Anne Calico the pig postcard was great fun thanks for thinking of us and Dominic adores the Buzz blanket and is sleeping with it every evening; Vicky Shepherd, once again thank you for the Toy Story things and the card which were very gratefully received; Kaden thanks for the great card. Babuka Aliex thank you for the get well soon card; Sarah Gilligan, we loved the rose postcard and really enjoyed the letter and thank you card; Rachel and Adam, once again thank you for thinking of us, the meercat card is up on the wall and the Toy Story drawing pad and card were wonderful. Sheelagh Hawkins, we all love the doorbells, the nurses think it’s especially funny as Dominic insists that they have to ring it to come into his room. Whoever sent the Sing along Mickey CD, thank you, the play specialist had a great time revisiting her childhood with it! Alison, thank you for the postcards; Ruby your handmade birthday card was beautiful, thank you. Jack, Dominic loves the Toy Story phone and stickers and phones Mr Tumble on it all the time! Georgina, thanks so much for the bubbles, playing cards and art set, and of course for the card. Maggie, thanks once again for sending us things from Oz; Kate Dee, thank you for the beautiful card you made him, he saw the boy in the bear suit and said ‘that’s me!’. Sophie P the Duplo was a wonderful gift to receive and he’s spent hours playing with it; Karen Isabell thank you for the pencil case and bag, both are being put to very good use and of course the art case and the Woody keyring, which of course he loves. Maggie (and Damson) thank you for the pirate card and of course the photo of Damson. Kate Thompson and family, thanks for everything, including the heart from Kitty and the book. Kate Ware, loved the elephant book, it got a big thumbs up from Dominic. Mandie, Lilia was so thrilled with her Hannah Montana things, and Elliot with his Ben 10 book, thank you. Naomi the Cars colouring book was great; I’ve never seen anything like it before. Jenny Rust thank you for the sticker book and animals and Carol Moore he loved the sticker scenes; Margret Nagy thanks for all the children’s cards. Wendy thanks for his teddy birthday card and letter; Nicky Pitman thank you for the great hammer picture maker, the spiderman stickers and Belle’s lovely rainbow. Leona thank you for Dominic’s Buzz blaster birthday present, which of course he loves. Ian, Nikki, Lennon and Isla, thank you for Dominic’s card, Toy Story characters and of course the lollipops! Penny Berrill thank you for the reusable stickers and your lovely letter. Becci, Mackenzie and Blake, thanks for thinking of Dominic as always and for the Toy Story bits. Mandie, the paper was amazing, and he loved the card, flannel and puzzle, I was very impressed with your Disney writing. Wiggly bags, thank you so much for the great bags for his line. Hayley (in case you’re reading this), thank you for the lovely t shirt and for frequently cheering him up when everything I have tried has failed. And of course Viks for the giggly toy, beautiful handmade card and most amazing huge birthday card which we have managed to stick on the wall with all the others (and of course for Post Pals).

If I have missed anyone I do apologise, sometimes it is hard to keep track of what the children are opening at home.

Update 25th September 2010

The surgery got cancelled at the last minute yesterday as a critically ill baby needed the theatre slot. He’s on the list for Monday unless he deteriorates more this weekend. Monday is going to be another very long day waiting to find out when he’s going down.

Update 23rd September 2010

Dominic is on the emergency surgical list for tomorrow afternoon. It’s another big operation to try and correct what they think is an intermittently twisting bowel which is excruciatingly painful for him. He’s already been in GOSH for nearly 10 weeks and it is likely to extend his stay even further. Added to this, it is his 4th birthday in a week and Elliot and Lilia’s mid October. They could all do with as much cheering up as possible. It’s come as a real blow to everyone.

Update 24th August 2010

So, Dominic has turned this into a bit of a hospital marathon, and we are really all scratching our heads. The issue is simply that he can’t stay hydrated. He’s had a new feeding tube placed in his bowel but it’s making bile pour out of his stomach. So much so we can’t get enough feed into him to stop him getting really dry so we’re stuck in hospital. No one has had any bright ideas yet and time doesn’t seem to be helping, so at the moment there is no end in sight. Things have been very difficult and seem more so now as it seems like we really have run out of ideas. Dominic is due to start his new school in a couple of weeks and so much preparation has been done to make sure he can start with everyone else. At the moment that’s looking increasingly unlikely. It’s not been helped by the ward deciding to put an infection status on Dominic, not because he has one, but because he had one at the beginning of 2009 and their protocol states that it cannot be removed until he has no ‘indwelling’ devices. Unfortunately his feeding tubes are precisely that and they are long term, so the play room and activity centre are now out of bounds which makes for incredibly long days with a little boy that doesn’t understand and two very bored siblings. Elliot and Lilia have really been struggling. They’ve been spending long days on the ward with very little sleep which has taken its toll on all of us. I wish I could organize some distractions for them, but it’s just so difficult as finding someone to take them so early in the morning until so late at night is so difficult and so much to ask someone else to do. Elliot has been waking up sobbing in the night apparently, and Lilia just clings to me and cries when it’s time to go. It breaks my heart.

Thank you so much to everyone writing to us. We do try and send thank you’s when we get addresses to write back to. Apologies if we miss anyone out, each and every gift, letter and card is very much appreciated.

So many people to thank and apologies to anyone I have missed… Becky thank you for the cards and the lovely hand drawn pictures. To Leona – Lilia loves your letters, if you let us have your address we’ll write back. To Rachel, thanks for your letter to Lilia. Karen thanks for the brilliant Buzz keyring and the letter. Ellie thanks for the colouring books and Elliot’s book. Alison – Dominic loved the tissues and the colouring book. Jane, thanks for the colouring book with Darth Vader in! Craig thanks for the card and pictures. Natalie, Cerys, Kaitlyn and Shannon, I wish we had your address so we could have written a thank you letter, especially for the chocolate! Sarah – you’re a star, such generosity, everything was perfect and there were squeals of delight. Rachel and Adam, your hand made Dominic laugh out loud and thanks for the flying fairies and dinosaurs, we flew them up and down the corridors. Anne, your paintings are just so beautiful and are hanging in our art gallery wall in his hospital room. Amethyst and Breeze, cool light sabre thanks, he’s given it to his pig toy to fight with at the moment. Rex the dinosaur – thanks for writing on behalf of the gang. Thank you to whoever sent the Toy Story sign for Dominic’s bed. Penny, many thanks for the pig, the jumper is proving popular for putting mini toys up so piggy can pull them out to scare the doctors. Lennon, thanks for the brilliant masks and the soft Buzz. He’s currently sitting next to Woody wearing sunglasses. Teresa, thank you for Lilia’s card and the sponge painting set. Becci, Mackenzie and Blake, thanks for the activity books and sweets. Finally, Viks, thanks for Elliot’s Dr Who ship.

Update 30th July 2010

Dominic’s operation went ahead as planned on 19th July. It’s been a long haul but I’ve finally got to the point where I’m not sitting by his bed worrying about what he’s going to challenge the doctors with next and I can start thinking about possibly taking him home sometime soon. As always, we are struggling to get his body to accept being fed, and so as predicted the kids lost out on going on the holiday that we had all been so excited about for so long. I also got to spend the fourth year in a row celebrating my birthday in GOSH, fun! He’s regressed hugely in his gross motor skills and is struggling to sit which is concerning, but I’m delighted that he is not retreating completely into his shell (well not in hospital as the nurses and doctors know to talk to him about Star Wars), but he has just hidden behind my hand on the two occasions we’ve been able to leave his room.

He’s also undergoing lots of tests while he is here to try get to the bottom of what is going on in his little body. And it is a little body – he’s the size of a one year old – which turns out to be due to the fact that he doesn’t produce enough growth hormone. So we’re probably adding in a nasty injection to his ever growing list of medications. Not looking forward to having to give that one.

Dominic has received some truly lovely post whilst he’s been in hospital and we’ve tried to reply to everyone who has included an address or email. Apologies if we’ve failed, but sometimes in all the excitement addresses might get lost, or the kids will open them when I’m not there. But thank you to everyone who has made Dominic, Elliot and Lilia smile when they are really struggling to find things to smile about.

Update 9th July 2010

Dominic’s big bowel operation has been brought right forwards. He’s now having it on 19th July. It probably means missing our mini holiday to Camp Bestival (he’s a big Mr Tumble fan and was desperate to see him and it’s all he’s talked about for months). It’s come as a real shock. I haven’t even attempted to break the news to his brother and sister who will fall apart too.

Update 8th July 2010

June has been a difficult month for Dominic. His health has been stable enough, despite a bout of chicken pox and his jejunal feeding tube coming out (which causes great panic around here as he has blood sugar problems so it means a mad dash to hospital). He has, however, had a lot of stays in hospital as the doctors try to understand what it is that isn’t working properly in Dominic’s body. His anxiety levels have risen with each stay and he is now terrified about the next one which is happening next week. Elliot and Lilia have been picking up on this anxiety and have been worrying in their own quiet ways as well. Hospitals mean losing mummy and worrying about their little brother and it puts a lot of strain on them.

Dominic doesn’t cope with change very well and his world has been thrown into turmoil by the loss of his beloved one to one carer at pre-school. Unfortunately, the pre-school didn’t manage the situation at all well, despite having months and months to prepare for it and Dominic is a shadow of the boy he was. He’s tearful and clingy and won’t speak to or look at anyone except those closest to him. It will take a long time to rebuild his confidence as his safe secure world has been turned upside down with no forewarning or preparation. Currently, I can’t even start rebuilding his security with all the hospital stays unsettling him.

He is also facing a big bowel operation. Some problems were found when his feeding tube was being replaced. It’s a very daunting prospect as his bowel doesn’t recover well from operations and there is always the risk that it wouldn’t recover at all. We’re awaiting a consultation with his surgeons and will go from there.

On a more positive note, his new manual wheelchair has arrived and is a huge success. The wheelchair service couldn’t offer anything suitable so I self funded a lightweight chair. It was worth every penny. For the last 4 years he has been completely reliant on adults to help him move. Now, suddenly he wants to be mobile. He’s learnt to change a Wii game and to come and find me to see what I’m doing. It takes my breath away every time I turn around and he’s there… it’s been a long time coming and I’m enormously proud of him.

A big thank you to everyone who has sent things. We have received some wonderfully thoughtful gifts and some brilliant letters and cards. I wish you could all see how excited he gets when it arrives. There is lots of arm flapping and leg waggling in anticipation going on! Enormous thanks to everyone who has sent things to Dominic. He’s going through a very difficult time at the moment and is very sad and anxious so every time something arrives it really is the highlight of his day.

Continue reading...

Alan S

17 March 2011

Story written 2008

Alan was born by C-Section and weighed in at a very healthy 9lbs 15 oz. When Alan was 18 months he was admitted to hospital with a very high temperature and sore ears. The Doctors ran some tests and we got a call two weeks later to go in and see them. We were told Alan had Cystic Fibrosis and it shook our world.

They then started him on antibiotics, vitamins and Creon for him to absorb the goodness in his food, and they taught us how to do physio to keep his lungs clear. Alan has required a few operations; he suffered twice from a rectal prolapse which required surgery. He also began to require IV antibiotics every 3 months; his veins were not good so they decided to insert a port which made things a lot easier for him. He was also started on DNAse to thin the mucus in his lungs so he is able to cough it up more easily. Alan also requires nebulised antibiotics to keep him well.

Alan requires a lot of care and has to endure a lot in his life with all the medicine and being in hospital, but he is a really upbeat little guy who tries to take things in his stride.

Update 13th September 2023

Alan is now 21 and will be moving on from Post Pals. A huge thank you to all of our volunteers who have supported Alan and his family over the past 14 years. Please join us in wishing Alan and his family all the best for the future.


Update 26th March 2021

Alan has been shielding what seems like forever! Hopefully we will can go out at some point. We have moved house which was really stressful for us all but we are happy now we are in. Alan is still having issues with his stomach and is lactose intolerant now. It’s on going. He has had his first dose of the Covid vaccine, he was ill for 24hrs then it settled. His lung function has improved a bit since he started on the new cf medicine. He often feels down with being stuck in due to Covid and every day feels the same. We have been baking and cooking to try and do different things with him. 

Update 12th September 2020

Alan has been shielding since March, so it’s been very isolating. His health hasn’t been as good as he’s not able to exercise, so it’s taken a toll on his lungs. He had been in hospital twice for IV’s which has been very stressful for us all as we are not allowed in with him. A lot of tears were shed, mostly by me.  

Update 31st July 2020

Alan has been shielding since March and it’s been a very stressful time. He has had 2 lung infections which meant he needed to be admitted for IVs and with the coronavirus we weren’t able to be with him, that was very difficult for us both. Not being able to get out to exercise has been bad for his lungs, we have been working hard at home to keep them moving. His lung function has declined but we are working hard to try to improve it. Thank you so much to everyone who has sent Alan mail and gifts, they have been a lifesaver of late. Even though shielding is being paused in Scotland we are very anxious about going out. It’s very strange times. 

Update 9th August 2019

We had a lovely holiday in July, it was well needed and we all enjoyed it. Alan managed to do really well in his exams so we are really pleased for him. He is being admitted to hospital on Monday 12th, he needs IVs as his health has gone down hill. As well as the aspergillus he has grown another bad bug called pseudomonas so they need to try and get it under control. He’s quite upset he needs to go in. The last year has been an almighty hard time for him not just physically but coping with it all mentally. He had a CT scan that has shown lots of damage to his lungs so he knows this is needed. His lung function is down too. 

Big thanks to everyone who has sent Alan cards, postcards and gifts, all very much appreciated by us all. 

Update 15th June 2019

Alan has been pretty unwell, he has aspergillosis in his lungs which are causing him real issues. He’s continued to lose weight and he can’t afford to as he’s so thin. He had a CT scan which shows his lungs are in poor condition with the mould growing in his lungs, so he has been put on an anti fungal medication for at least two years. He also needs his bloods checked every two weeks, which is really stressful for him.

One of the boys that go to clinic with Alan has passed away. He was only 16 and Alan and I have really struggled with this news.

Alan has taken all his exams now and we are hoping he has done ok, but I do know he tried his best so it’s all I ask of him. He’s now moved into 6 year, his last year at school.

We are going on holiday next week to try and relax.

Thanks so much to everyone who had send a card and a gift to Alan, it means so much to us, it really brightens his life. Times have been tough lately and it seems to be never ending but I’m trying to stay positive. 

Update 10th February 2019

Alan’s health has not been good in the last few months. In November he was admitted with DIOS which is Distal Intestinal Obstruction Syndrome. It causes him to be blocked all the way to his tummy with poo. He was really unwell and admitted as an emergency due to fear of it bursting. He then needed to go to the big hospital to get a midline put in as his veins were so bad, the last IVs only lasted a week and they wanted to give him another course, that went in on the 2nd attempt and lasted the two weeks. He was admitted on Christmas Eve as an emergency again with DIOS this time much worse than the first. He was really unwell and I was so scared. His IVs didn’t help at all. His bloods showed he has Allergic Bronchopulmonary Aspergillosis (ABPA), a fungus that is growing in his lungs, that he has taken an allergic reaction to, so he needs to have steroids and antifungal meds to treat it. The antifungal meds have affected his eyes, he says things are so bright or really dark. He’s trying to cope with it all but it’s been a lot on his body. His lung function is no better, so he’s to have a CT scan so they can get a good look at what’s going on. His spine is also causing him problems, we are waiting to see an orthopaedic specialist for that.

Firstly I’d like to say thank you so much for all the Christmas gifts Alan received. It was so appreciated, even more so with being in hospital.

If the Vaughan family see this could they please drop me a email or a message on Facebook please, they were one of Alan’s elves.

To Hilary for her continued support, I’m so grateful to her. To Kirsty and family also, thank you for all your letters and gifts, Alan loves reading about the children. Denise, thanks for your gifts and support you give to me, dropping a message on Facebook to see how things are really means a lot to me. To everyone who has taken the time to write to him, send him a gift or postcard, a million thanks, it’s been so welcomed at this time more than ever, to know people care about him makes him so happy. We are praying for better days to come as this year hasn’t started too well, but what we are lucky in is the love and support we receive from all of you at Post Pals and all who support it, so thank you each and every one of you.

Update 1st November 2018

Alan has had a awful few months, he’s currently having 2 weeks of IVs. His lung function has dropped by 30% in the last month and he’s lost a stone in weight. He also is having a problem with his spine because he’s lost so much weight we think. But he’s been referred to orthopaedic. He’s just not himself, he’s pale, sad and tired all the time. His veins are really bad so the lines only last a few days which really distresses him. 

Massive thanks to everyone who takes the time to write, email and send gifts we thank everyone of you. 

Update 2nd June 2018

We have had a strange few months. Firstly, we found out Alan’s surgery on his brain was not successful and he will require more surgery. We are seeing the neurosurgeon on Monday, so we hopefully will know more. He’s been having pains in his spine and legs and that will need addressing. Alan had a scan for his annual review. Alan’s scan shows he has CF-related liver disease. His liver and spleen are enlarged so he now has to go onto urso acid. His weight has fallen another 3kg, so he has been put on milkshakes to help with his weight.  His stomach issues are getting addressed with a specialist in Glasgow.  We met with him and they are doing further investigations and we had to hand in stool samples to see if that shows anything. His lungs looks good. Wee Al is shocked with the news, as are we. He looks so well, it just shows you never know what’s going on, on the inside.

We are going to Florida on the 18th June and we are hoping a break will do us all good, as it’s been a very stressful few months for us all. Alan has also sat his exams with all this going on, so we are hoping he’s done ok.

Huge thanks to everyone who writes and sends post to Alan, it is so appreciated by us all xx.

Update 15th March 2018

Alan and I were at Yorkhill on Thursday for further tests as he was having pain in his spine. The operation he had on his brain last June didn’t help the syrinx in his spine, so they were scanning and X-raying him to check for scoliosis as this is something that can happen with the malformation. They also checked to make sure his spinal column was not frayed or partly severed which thankfully they weren’t. He does has some inflammation on his spine so he has to take anti-inflammatory’s for a month to see if that helps. He will need surgery again at some point but not in the next 6 months unless something happens. So I am counting my blessings tonight. Not exactly what we hoped for but at least surgery is not immanent. He’s going to see the Physio a week on Wednesday for a muscular skeletal assessment as his joints as well as the pain in his spine have been giving him pain,

Update 4th January 2018

Firstly we would like to wish everyone a happy new year and hope you all had a lovely peaceful Christmas. Alan has had a stable month apart from his stomach. He has been having real problems with it. We have hospital on the 9th so hopefully we will get some answers. It’s also the start of his annual review so he gets his bloods taken then too. They will arrange for a bone scan and tummy scan and X-ray to be done. We see the big hospital in March. We also see the neurosurgeon this month, so we will see what that brings. Alan is also having issues with food and his weight. He has lost 4kg in the last month which is a lot for him. We are trying really hard to encourage him with food and trying to choose healthy options to make thing easier for him, although healthy options is not ideal as he doesn’t absorb the fat from his food. He also had his prelims at the end of January, a lot to cope with this month so please keep him in your thoughts.

I would like to thank everyone who took the time to send a card, postcard or gift not only at Christmas but all year, it really means the world to us. He was very much thought of at Christmas and received many many cards from all over the world. To Hilary and Kirsty who send every month to him, he talks about you as if you’re his friend who lives down the road, so thank you for taking the time to do what you do. To Alan’s elves thanks for all the lovely gifts he received – so kind of you.

Post Pals is a bright light in the darkness through all the hard times we have, so to Vikki and the team and all the lovely people who send cards and gifts to Alan, we thank you from the bottom of our hearts. We don’t know what 2018 will bring but we do know the cards that Alan receives will brighten his day.

Update 1st October 2017

Alan required surgery on his brain in June. The op took 6 hours, but he was away from us for 10 hours. It was a very scary and worrying time. He was in intensive care and it was really hard seeing him like that. The operation went well and they think it’s been a success, but we will know when he has a MRI in January. He has recovered really well and it now back at school. He can’t do all the things he used to yet as he needs 6 months recovery time. In terms of CF, it seems he just got over one thing and is hit with another. He was at clinic with problems with his stomach, it’s been really bad with him going to the toilet about 9 times a day. The consultant thinks it’s IBS but he has to go for an endoscopy for them to have a look. He will go to Glasgow hospital for that. They will put him to sleep and have a look. His lung function was down a bit, but he’s not exercising because of his head, so it’s a bit of a vicious circle right now. Alan is also in 4th year now, so it’s exam year for him, we are doing all we can to try to keep him well, so he doesn’t have to take time off school. It’s stressful for him, especially with his tummy being bad. On an up note Alan’s diabetes is really well controlled at the moment, so he’s had no hypos for a few weeks.

Alan celebrated his 15th birthday last week, he had a great day.

Huge thanks to all the support we have had over the last few months from everyone who has sent cards and gifts, means the world to us.


Update 1st May 2017

Alan has not had the best month, in fact since January it’s been really hard going for him. He has been suffering really bad headaches and we can’t get them under control. We had a neurosurgeon appointment on Friday where they have put Alan on the emergency list to go in and have an operation on his brain so they can check his brain pressure this week. He’s, as always, taken it in his stride, but his dad and I are really worried. He also has had a problem with his bowels. They took a stool sample to check that his creon were working properly, the results came back that they are working fine so he’s being referred to a gastroenterologist for them to do further investigations. They have taken bloods to check for coeliac disease but the results aren’t back yet. He’s coping with so much all at once, on top of all his CF and diabetes.
Thank you to everyone who sent Alan a card or gift, we really appreciate it. We wonder how we would get through without you. When he’s having a bad day and a card comes through his face lights up.

Update 5th March 2017

Alan has not had a good start to the year, and it’s not picked up. He is suffering terribly with headaches and bowel problems. He just isn’t getting a break. The headaches he has is connected to the chari 1 malformation he has , they have organised a MRI for the 18th. It can’t come soon enough. They have given him codeine for the pain in his head which is causing him constipation, so that then gives him bowel issues. They are not good at the best of time. So this is a added pressure for him. They have him on 3 meds to try and ease the pain in his tummy. I feel at the end of my tether actually, as I feel we are on our own with it all. The hospital have been no help when we need it, as the nurse is off sick and you can’t get a hold of anyone when you need them. I feel so sad for Alan as he is coping with so much. We have his annual review results on the 14th, so I’m really hoping we get some answers to his problems. Alan never complains about anything, but the headaches are really causing him problems.

I would like to thank everyone who had sent a card, gift or email they are really appreciated. Special thanks to Hilary and to Kirsty, Callan and Olivia.

Update 28th January 2017

Alan has been not been doing so good lately. He’s had an infection in his throat that has made him feel horrible. He was in Italy with the school when he was taken ill, he was ill for 4 days over there and it was one of the worst times ever for both of us. Glad to have him home. He’s going through all the tests for his annual review at the moment. Lots of appointments. We are seeing the neurosurgeon in a few weeks with regards to Alan’s operation, so it’s a stressful time. Alan tries to remain upbeat. We are having real issues with food at the moment. Alan lost half a stone in a week when he was in Italy, so we are trying hard to stop him losing any more.
We had a lovely Christmas, it was really quiet, but nice. Thanks to everyone who took the time to send Alan a card, gift or postcard all of them were and are really appreciated and you don’t know how much happiness it brings when Alan is having a rough day, which is a lot of the time lately.
On a positive note Alan played at Ayrshire schools badminton competition today and was runner up in the boys under 16’s and mixed doubles. Can’t tell you what an achievement that is for him and we are soooo proud of him and all the hard work he puts in with all the challenges he faces. Not a easy thing to do but he gives it his all.

Update 12th October 2016

Alan has had a terrible time, he’s had a blockage in his bowel. He’s now on 3 new meds on top of everything else. He’s not had a break lately.

Update 2nd October 2016

We missed out on Chessington as Alan has a bug so we were really sad about that and so was he. He’s really struggling with his diabetes as well at the moment with lots of hypos which is not nice at all for him. He celebrated his 14th birthday in September, he asked for a turntable to play vinyl records on, what a treat it’s been being able to listen to them again. He really loves it. We were at the lung lab on Friday to see if his lung function is up, unfortunately it’s down a little, but we’re hoping the meds help it really soon. He gets so frustrated not being himself and extra hospital appointments and being in hospital is not what or where he wants to be.
Thanks to everyone who took the time to send Alan cards and gifts throughout the month especially for his birthday it is really appreciated by all of us.

Update 8th August 2016

Alan has had an up and down month. We have been on holiday to Cuba, where Alan suffered a perforated eardrum. Very painful for him indeed. His chest has been up and down, a course of antibiotics are needed to see if it can help, if not then he will need IVs for 2 weeks. He has been training with a football team to try and keep his lung function up and they have asked him to sign for the team. Not sure if he will play many or any games but it’s been a dream of his since he was 5. I’m so proud of him! He makes my heart burst with pride. We are also attending the psychologist with Alan as he has huge issues with food. Not wanting to eat, worrying about being fat, not being like his friends. It’s really tough.
Thank you to everyone who has sent Alan post and gifts, he is so cheery when he receives them. Hilary you’re a star! Thanks so much for Alan’s project, he was so pleased.

Update 5th June 2016

Alan is currently fighting another bug. We haven’t had a break lately, it’s one after another. He is having a different antibiotic to see if it will make a difference. He is also being started on a sodium supplement because he sweats so much. He is also struggling with food, he worries so much about eating healthy even though it’s not ideal for him. He is constantly worried about his weight.

We have been at our caravan at Fort William for some rest and relaxation, it’s so peaceful up there, we played dominoes and totally chilled. Alan moves into third year tomorrow, a big change for him and a very important year in preparation for his exams.

A huge thanks to everyone who sent Alan a card. Thanks also to his monthly project from Callan, Olivia and Lennon the dog. Alan loved his parcel, his socks were amazing! He loves writing, so the note pad is perfect and the sweets are his fav.

Update 2nd April 2016

Alan had his annual review results from the big hospital in Glasgow. His lung function is still up and down. They haven’t made any changes to his medicines this year, although it’s thought his inhalers will need to be tweaked. His diabetes control is very good and they are really happy with his blood sugar results. Now he is almost 14, they have started to discuss puberty and fertility in men with cystic fibrosis. It’s very difficult for him to take all that news in.
He plays badminton as some of you may know. He played in the Ayrshire boys under 14’s which he managed to win. Words can’t express how delighted and happy we were for him. He’s also going away on a school history trip, to see world war sites in France and Belgium at the end of the month. He’s looking forward to it. He’s on holiday from school now, so we will go to our caravan for a few days, hopefully the weather will be good, and we will get out and about. Relaxing does sound brilliant though.

A huge thanks to everyone who has taken the time to send cards or a gift to Alan. You are all amazing!

Update 3rd January 2016

Alan has had a stable month, but yet again he grew a bug. It seems the winter is never- ending antibiotics to try and clear them up. We were in Tenerife for a week for some sunshine, which was lovely and it really helped Alan. He leaves tomorrow (Monday 4th) to go to Italy skiing with the school. He’s really excited. January is our annual review month, so when he returns from Italy, we have the hospital the next day. His bloods will be taken, X-rays and scans arranged to see how his lungs are holding up, and to see if there are any changes. It’s a worrying time. Alan is now 13 and he is aware that this is what it’s all for, this is why post pals is so important to us. He loves to receive mail and it helps keep him happy and not to focus on the worrying things.

Update 2nd December 2015

Alan has had a good month. He has a bug at present, but an antibiotic is helping for now. His lung function is down a little, but hoping when the antibiotics kick in, his function will improve. We had a parent’s night last week. I was so proud of him. He is doing amazing, the teachers are really pleased with his work. They said he is a very mature boy who helps everyone in the class. He is thoughtful and kind. My heart was bursting with pride that everyone sees what I already know. He deals with so much, but thinks of others all the time. He’s an amazing young man! He is really looking forward to Christmas. He is going skiing with the school in January, so I’m hoping his bug clears up and he’s as well as possible. Thank you to everyone who has written to Alan. Huge thanks to Hilary for Alan’s monthly projects she has sent him all year. You are amazing!

Update 1st November 2015

Alan’s lungs have been up and down, he’s grown a few bugs lately, which have been treated with antibiotics. He is having lots of joint pain at present and we are seeing the Physiotherapist to see if she can help. This frustrates Alan as he loves his badminton, but his legs and feet ache after it. We have also seen the neurosurgeon this month and although she is happy with him, if the pains continue, she will see him earlier than planned.

Alan is also going to Italy skiing soon with the school. It’s the first time he will have been away from me, so we are currently trying to organise everything. He goes in January, but things take planning, with all he needs to take with him.

To everyone who has written and sent gifts, a heartfelt thanks to you all. Alan loves receiving mail. Thanks to everyone who has made him smile, especially on the bad days x

Update 26th July 2015

We went on holiday to Cuba for 2 weeks recently and it was amazing. Before we went Alan got a very bad bug that needed really strong treatment and we ended up having to take it with us on holiday. It made his skin very sensitive to sunlight so we had to be extremely careful. We have also had a few days away up at fort William at our caravan and it was really relaxing.

Alan has clinic on Tuesday so we are hopeful the bug has cleared up.

Thank you to everyone who sends cards, postcards and gifts, it is very much appreciated.

Update 30th May 2015

Alan has had a good month. He had clinic last week and things are stable. His lung function was a bit better this month and he’s working really hard at it and doing badminton and horse riding. He had a bone scan yesterday so we need to wait for the results of this. Some of his vitamins were low, especially his vitamin D. So his supplements have been increased. Alan now takes 60 creon tablets a day as well as antibiotics, vitamins and other tablets, to keep him well. Sometimes it’s hard to comprehend taking that amount in one day.

Alan moves in to second year on Monday, I can’t believe a year has gone past already. He’s loving school so that makes a huge difference.

Thanks so much to everyone who has sent a card or gift this month, it means so much to us. To know people care about him is very touching.

Update 12th May 2015

Alan is recovering from having his toe nails removed, it has been 11 weeks now since they were removed, but we are finally seeing a light at the end of the tunnel. He hasn’t complained at all about his feet although I know he has been in pain with them.

He has not been able to play badminton for weeks but he went back on Tuesday and loved being back. His lung function was a little bit down but hopefully him being back to exercise will help improve it.

We have a dexa bone scan on the 28th to see what Alan’s bone density is, just to see if his bones are not thinning with the lack of vitamins and minerals his body absorbs naturally. We have cf clinic today so we are hoping all goes well.

We had a week holiday at our caravan at Easter which was lovely and the weather was fantastic. We are looking forward to our summer holidays.

A huge thank you to everyone who has taken the time to write to Alan this month, we really do appreciate it. Thanks to Hilary for his monthly project as he loves receiving your post. He loved his insect house this month.

Update 1st March 2015

Alan has had an eventful month. We are currently going through all the tests for his annual review which takes weeks. The psychology review always stirs things up we don’t think about every day.

Alan also took part in a competition to play for our county and he played amazingly and qualified to represent Ayrshire. We were mega proud but unfortunately he won’t be able to take part. On Thursday he went in to have surgery to have part of his toe nail removed and when we arrived and they saw his feet it he ended up with both big toe nails removed. He is in a lot of pain at the moment. It takes 6-8 weeks for them to heal. He was pretty gutted after playing so well to qualify then to miss out because of this.

The 10th March is his annual review so we will know the plan for the year after that. It’s a bit of an anxious time until then.

Thanks to everyone who has written or sent a gift to Alan, we really appreciate it. Alan loves it when he has mail and appreciates each bit of mail he receives.

Update 15th November 2014

Alan has had a good few months and his lung function has come up a bit. It’s been hard work for us to get it moving but we will continue to push forward to get it to where we want it. Alan has settled in at academy really well, he’s had lots of awards since he started with commendations from every subject and he got pupil of the month in maths. We had parents night last week and all the teachers say how hard he works and how lovely he is. I knew that but was lovely to hear everyone else thought that too. He got chosen for the basketball team at school which he was soooo happy about, they played their first game on Thursday where they drew 14 each.

We saw the neurosurgeon a few weeks ago for Alan’s neck and spine and she was quite happy with his MRI results, so she is not doing anything at the moment except watching. We will get a review appointment for next year.

Thanks you to everyone who has sent cards and gifts to Alan. Thanks to Kev for his continued support. To Hilary for all his monthly projects and to Denise who was his elf last year andshe messages me on facebook to see how we all are. To Libby for all her love and kindness. To Marjolyn from Holland thanks so much for all the cards you send. We appreciate everything that’s sent to Alan and he loves them all.

Update 2nd August 2014

Alan has had a good month. His lung function is still down but we are working hard on trying to improve it. Alan has finished primary school now and this upset him greatly as the lady who looks after him and his medicines isn’t going to the academy with him. We need to start again with someone new helping him.

Alan had a MRI scan for his chari 1 malformation to see if there is any change and we are currently waiting on an appointment with the neurosurgeon to get the results.

We went on holiday to Fort William for a week this summer which we enjoyed very much. We also went to the commonwealth games to watch the badminton and we had a fantastic day. It was brilliant to soak up the atmosphere.

To everyone who has taken the time to write to Alan and send gifts, we thank you from the bottom of our hearts. We really appreciate your kindness and for making Alan feel special and loved.

Update 30th April 2014

The last few months have been mixed. Alan has had ups and downs. He had an annual review where they decided to move him on to 25,000 strength creon from 10,000 to cut the number of tablets he needs to take with food as he takes 50 a day. It didn’t go well and he lasted 2 weeks. The new tablets gave him a very sore stomach, he was prolapsing all the time, and his bottom was very sore and he was terrified going to the toilet. We had that before and didn’t want to go back. I called the hospital and they decided he was to go back on 10,000 and they would try again in a few years. His vitamin d level is also low so they have given him an extra vitamin d supplement. His lung function is up a little so that’s a positive. Alan also contracted the virus hand, foot and mouth. He was covered in spots even in his throat. He couldn’t eat and it hurt drinking, but within a week he was back to normal although some of the spots on his feet are still sore looking.

On a positive note, Alan has been chosen to play for our county at badminton at Perth on Saturday. I can’t tell you how proud we are of him, who would have thought our baby would push himself and be able to achieve this amazing achievement. Alan continues daily to amaze me, he really is a remarkable boy with nothing stopping him, not cf, diabetes, his chari1 malformation, nothing!

He goes to the high school in August so we are in the transition period at present. I have to say I’m worried about it, a whole new set of challenges for both of us, and it’s the unknown of who will look after his medicine and things, but I guess that will be sorted out.

A huge thanks to everyone who sends mail and gifts to Alan. He loves receiving them and reading all your letters.

Update 28th January 2014

Alan is currently doing ok, although he is on a antibiotic for a mucus cough which has caused his lung function to drop.

He was entered in a badminton competition and managed to get to the final, he did amazingly well. Cf certainly doesn’t stop him trying even if he is exhausted afterwards.

Alan is currently going through lots of tests for his annual review in March. The big hospital come to see us to make a plan for the year so we’re keeping things crossed for good results.

He also came home from school today with star pupil for hard work. We couldn’t ask any more of him, he’s trying so hard. He’s a inspiration to me. He’s hard working, positive, kind, loving and always wants to help others. I’m very proud of him and how he is dealing with things at the moment. All helped by the fact he knows people care about him by writing to him.

To Kev, Maria, Hilary, Denise and Elizabeth, for the gifts they sent Alan at Christmas – we are so grateful and we thank you all so much. Alan was very happy with all the gifts. Thanks to Marty for the letters and to everyone else who sent mail, we thank you so much.

Update 2nd December 2013

Alan has had a stable couple of months, his lung function is still down but we are working hard on trying to keep it up.

He won a trophy tonight at his horse riding for most improved rider and we are so proud of him. He is doing well at school and at parents night they told us how mature he is and managing his medicine very well. He was away at Arran for 5 days with the school, although his dad had to go with him.

Alan is looking forward to Christmas very much, we love this time of year.

Huge thanks to everyone who has sent cards or gifts to Alan and to Kev and Hilary who regularly send to him. To everyone who has taken the time to write to Alan, we all feel blessed and he feels special receiving mail.

Update 28th September 2013

Alan has had a good month. His lung function is up a little and he has grown no bugs. He has grown and lost a little weight too and they want to keep an eye on that.

He had a birthday on the 24th and we went up to fort William as we have a caravan up there. Him and his dad did gorge walking, which is walking up mountains and ravines and using the waterfalls as natural flukes. All very scary for me! But the boys loved it. I was very proud of Alan as it was something I never thought he could do.

He is currently away on an adventure weekend with the diabetic team from the hospital and the other kids. He has never been away from me before and I was really worried but I’ve not heard from him so he will be having way too much fun to think about home.

He also had to write a speech at school to be considered for school house captain and Alan was lucky enough to be chosen by a panel of teachers and pupils to be the house captain, which was another very proud moment for us. He is turning into an independent young man who makes us very proud to be his parents each and every day. He’s my hero and inspiration.

To everyone who sent Alan a birthday card, gift or letter, we thank you. To Kev for all the letters, HUGE box of goodies for Alan’s birthday, for his support to me on Facebook, I thank him from the bottom of my heart. To Hilary for her monthly project and for the graze box for Alan he enjoyed it very much. To everyone who has put a smile on Alan’s face I really appreciate it. We do feel very cared for and loved.

Update 15th August 2013

Alan has had a stable few months, although his lung function is still causing concern, as it’s still low. We are attending the lung lab every month at the moment. We are taking him swimming for exercise and to help with physio. Alan has also had an increase in insulin as his sugar levels were running too high, he now does all his injections which are up to 4 a day now. He also has to take 48 creon a day as well as all his other meds. It’s a lot for him to deal with.

We were at Fort William for our holiday and although he still has all his treatments to do it is a break away and he loves it up there. He goes fishing with his dad and loves relaxing and watching all the little birds. He starts back at school on Monday as Scotland schools go back early. He goes into primary 7 and is looking forward to it. He is very caring and helpful and will be a monitor for the primary 1’s starting.

A huge thanks to everyone who has written to Alan. To Kev, Hilary and Elizabeth who write regularly to him. Kev, a huge thanks for the painting you did for Alan it is amazing and he loves it. He loves receiving mail and hearing everyone’s stories, we are really grateful to everyone who has taken the time to write.

Update 31st May 2013

Alan’s lung function is still causing concern, he is being monitored every 4 weeks at the respiratory lab. He is continuing with his hydrotherapy for his lung function and joints.

He has been playing badminton for a few months now and was in a competition in which he managed to get to the semi final. We were so proud of him. He really pushed himself.

We are seeing the neurosurgeon in July again about his chari 1 malformation and I will update when we find out what they say.

I want to thank everyone who has taken time to write to Alan as he really loves receiving post, it really cheers him up.

Update 11th April 2013

Alan has had a rough few months. He had his port removed in Yorkhill which he has recovered from. He had an annual review with the team and his lung function remains low and it’s the lowest it’s ever been, which is scary. They have started him on hypertonic saline to try and remove the gunk from his lungs, it’s hard for him to tolerate it as it’s very salty. He also has been referred to the hydrotherapy to help with his joints and his lung function, he’s really enjoying it. At the review it was decided that if his lung function doesn’t improve then he will require his port to be replaced which requires another operation. This makes me very upset as I wanted them to replace it when they took the broken one out! It’s very frustrating.

We are just back from a week up north which did us all the world of good as we all needed it. The weather was fab and very sunny which was really nice. Alan also started horse riding to help his lungs – he loves it and it is very rewarding to see him happy.

We want to thank everyone who sent cards and gifts to Alan. We really appreciate it and he loves receiving post, it makes us all smile when he opens them. So thanks to everyone who has taken the time to write.

Update 29th January 2013

Alan has been in hospital having a operation. He was having his port removed as it was blocked and he was very frightened this time and it was horrible to watch. He did very well though and was extremely brave. He has picked up a lung infection and is presently on antibiotics to help.

Alan is also struggling with food at the moment, it’s actually awful! He is not wanting to eat and when he does he wants it to be healthy as he says he doesn’t want to be fat. School have been doing healthy eating and this is the result. With him having cf and diabetes, food is a very important part of his health care and to say it is challenging is a understatement.

We are seeing the specialist hospital in March for Alan’s annual review, his lung function has continued to drop so I am hopeful they will have some sort of plan to help. He also had a scan of his abdomen to check all his organs so we will get the results of them then too.

Post Pals is a godsend at the moment as when Alan recieves mail it really makes him smile, which we are not seeing too much at the moment with the food issues. So thanks to everyone for their continued love and support.

A huge thanks to everyone who has sent Alan a card, letter or gift. Thanks to Hilary who is Alan’s monthly project (he loved the blanket), to Natasha for her cards, to Kim, Maria and Michael, Barbara, and everyone else, we really appreciate your kindness.

Update 29th November 2012

Alan has not been having a very good time, he’s off school with a very bad infection causing him to have a really bad cough and sore chest. He is on a new antibiotic to see if we can get it under control. He has been attending the lung lab to keep an eye on his lung function which in the last 2 months has dropped 20% which is a massive worry to us.

Alan always remains upbeat and really cares about others and he just tries to get on with it, which makes me very proud. He is also going to be an uncle as my eldest daughter, Nicola, is expecting a baby in June, so he’s excited about that.

I’m very lucky as although Alan is 10 he still believes in Santa so he’s very excited about December coming!

Thanks to everyone who has taken the time to write to Alan, is is truly appreciated.

Update 2nd October 2012

Alan has had a birthday this month and he was 10. He had a lovely time and we went up to Fort William for the weekend. He has a bug which has resulted in him needing 2 weeks of antibiotics though.

We are still waiting to hear from hospital about the renewal of his port – we have been waiting months for the appointment. His lung function remains down and they are monitoring it every month to keep a eye on it.

Alan received pupil of the month this month for continuous hard work in maths and we are very proud of him.

Thanks to everyone who sent cards for Alan and to Maria and Michael for the present for his birthday as it was very much appreciated. We do really enjoy receiving cards and letters, they really cheer him up and I am grateful to every one of you.

Update 19th January 2012

We had hospital recently for the start of Alan’s annual review. He had his bloods taken and they arranged for him to go to the lab for a lung function test, to the x-ray department for an x-ray, and scans of his abdomen, liver and portal system, which are happening on the 1st February. He is also going to have 2 weeks of intravenous antibiotics starting on Monday. We are trained to do them at home and although they are very tiring doing them, it means we do not have to stay in hospital. Alan has been off school with a sickness bug and is just not quite himself, so, the IVs will hopefully help make him feel a lot better. I do worry at this time of year when it is Alan’s review time, I am hoping for good news in March when we see the specialist from Glasgow to get the results.

A huge thank you to everyone who sent Christmas cards and gifts to Alan, he loved them. Huge thanks to Sara and Meggie for sending Alan all year, he would love to write back to them to thank them but there is no address on it.

Update 30th September 2011

Alan has had chickenpox very badly. They were in his mouth and down his throat and because he has CF they gave him antiviral medicine but it really did not help. He also had his iv line in whilst he had chicken pox which was challenging for us and the hospital as they had no kids having ivs and chicken pox at the same time! He also has had a infection which required 2 weeks worth of antibiotics which hopefully has cleared it.

He celebrated his 9th birthday last week – he got a mobile phone and he was delighted. I can’t believe he is 9, time has flown. I really struggle at his birthday; I think about each year ticking past and think too much about what if… it’s a bitter sweet time for me. I just try to get through it and Alan receiving cards and gifts from everyone reminds me people care.

Thank you to everyone who has sent Alan a card or gift for his birthday, it’s much appreciated.

Update 5th July 2011

Alan has had a good month. He had a haemophilis bug at the beginning of the month and had 2 weeks of antibiotics and he is due to have two weeks of IVs from the 20th July, so hopefully that will keep him well.

We managed to travel to the Post Pals party this year, it was quite a journey but sooooo worth it. We all had a great day and Alan really loved meeting everyone, it was so lovely to finally meet everyone.

We are taking Alan camping for the weekend for him to try it; he’s been desperate to give it a go. We are going to Inverness as he wants to go to Loch Ness to see if he can see the monster. Keep your fingers crossed the weather stays nice for us!

A huge thanks to everyone who sent Alan cards and gifts. Thank you to Sara and Meggie for the June project, Alan is enjoying playing with them very much.

Over the last few years Post Pals has made our life more bearable. To know people out there care about us means a lot. When Alan is feeling down and a card falls through the door, it makes both his and our day. So to everyone who has and continues to write to Alan, I want you all to know it means the world to us, so a HUGE thank you.

Update 2nd April 2011

Alan is having 2 weeks of ivs at present, which is very tiring for both of us but hopefully will kill the bugs in his lungs. He had an annual review last month and it was decided that he would have ivs every 3 months again this year as his lung x-ray had no changes from last year so it seems to be working.

He is attending the neurosurgeon on the 26th of the month to see what they are doing with his brain and spine, whether it will be a review again or surgery, his legs are really playing up at times. He has been really struggling psychologically at the moment and we are working closely with our team to make things easier for him. He is worrying about everything which she thinks is leading to him seeing shadows, so sleeping is a real problem.

To everyone who has sent cards and gifts to Alan it is so appreciated. With him being so low, he really loves getting them and it is a joy to see his face as he reads them and realises people do care about him. Any card this month would as always be most welcome. Post Pals has made life more bearable and seeing Alan’s face light up is priceless, so a huge heartfelt thanks.

Update 12th January 2011

Alan had a great Christmas and kept well. His chest was clear although he is still having problems with his legs. He got a psp for Christmas which he was delighted with.

We had Alan’s check up on Tuesday and his chest was clear, he had grown and he had put on weight. For the first time in ages he got a glowing report. I am so pleased. Alan is coping really well with the problem with his legs and feet and although he gets sore he is still keen to have a life. He is on codeine for the pain. Alan has had his bloods taken and he has to have an x-ray, an abdomen scan, a lung function test and a walking test before our next hospital appointment. We see the specialist from Glasgow then and they make the years plan for him.

Amy, Alan’s sister, has been nominated for North Ayrshire’s young musician of the year. We are so proud of her.

Thanks to everyone who sent cards to Alan and Amy at Christmas and to Kim and Maria for sending Alan a Christmas gift.

Update 26th October 2010

Alan has had the usual cough this month and he is due IV’s in November so hopefully things won’t get too bad. We went to the Neurologist a few weeks ago to have the results of Alan’s scans. They are satisfied with the way Alan’s neck works so although his ‘blocks’ are out of alignment they are not concerned. He will be seen in 3 months by them. The pains in his legs are no better and they have given him the painkiller codeine for that, which is helping a little. Alan is also managing to do his insulin himself all the time now. He had done it a couple of times when he felt he could, but the day we went to see the surgeon at Glasgow, he asked me if he could do it. Of course I said yes and since then he has done it by himself. I’m so proud of him, we all are, and in fact he is very proud of himself because it was a big obstacle for him to overcome.

We managed to use the tickets we got from Post Pals for Alton Towers we went down for Alan’s birthday. What a fab time we had, so thank you. Alan loves the fast rides, although he was too small for some of them, but he loved the ones he could get on.

Thank you to everyone who sent Alan a birthday gift, sent a letter, or a card. It really does make him smile and brighten his day.

Update 29th August 2010

Alan has been having 2 weeks of IVs and they finish on Monday. The IV’s have made a big difference to him this time; he has a little more energy and is not coughing as much either. We have also been to the hospital to have CT scans on Alan’s neck and they said results would be available next week sometime. He is having very bad pains in his legs and feet so hopefully they will get back to us soon so we can get something to make him feel a little better. He managed to do his insulin himself this month which made us so proud of him.

Alan is also back at school now and likes his new teacher. He loves fishing too and he caught his very first fish all by himself yesterday, it was a rainbow trout and weighed 2.2lbs. He was so proud of himself and his dad was really proud of him for the way he managed it himself, he is turning in to a very independent boy.

To everyone involved with Post Pals, I can’t put into words the difference it makes to our lives. When we are having a bad day, a card will pop through the door and really brighten our day, it makes a huge difference to all of our lives.

Alan was lucky enough to have a dream come true granted to him by the This Morning programme this month. He got to go in a helicopter and drive a tank. We got to stay in a hotel overnight and they came and surprised him in the morning – he had so much fun and to see him so happy was really nice. Alan has had a lot to cope with lately and I’m ever so proud of him and the way he handles things. We know we have lots more obstacles to overcome, but he is actually my hero and makes me very proud to be him mummy.

Huge thanks to everyone who has emailed, written, and sent a gift to Alan and Amy this month, it is so appreciated.

Update 24th August 2010

Alan goes to hospital on Thursday for 2 CT scans. He has managed to do his insulin himself too, we are so proud of him.

Thank you all for making Alan smile with all the post he receives.

Update 4th July 2010

Alan has been struggling with everything this month. He has been having serious pains in his legs and feet, and having headaches too. We are still waiting to see the surgeon at the specialist hospital and every day waiting feels like a month, it is so hard waiting. He is also finding getting used to his insulin difficult – he hates it. We have tears when we have to do the injections and it is awful watching him like that. I’m so hoping he gets used to it. All post will be most welcome as he needs cheering up so much.

His dad and I went fishing for the first time and he loved it. He never caught any fish but is going to try again. We also went to Linlithgow Palace this month, there was a jousting tournament on and we all had a great time. He has also stopped for his summer holidays from school; he is pleased because his legs and feet are really sore in the morning so this gives him time to recover.

Alan got a cup and shield at prize giving at school. He won the citizenship award and his headmaster said he is an inspiration to everyone he meets. He was so pleased to win it and his dad and I were very proud. He is inspirational to us every day.

We have the Diabetic nurse and the eye clinic tomorrow so hopefully the nurse can give us some tips on how to make life a bit easier for Alan.

Thanks to everyone who has sent posty and gifts to Alan. This has been a difficult month, so a huge thank you.

Update 5th June 2010

Firstly I would like to update you on Alan’s surgery. His operation was a success and he slowly recovered from it. Due to him being put to sleep with gas because they could not get a vein in his hand or arm, it irritated his lungs a lot and he had a awful cough. He had 2 weeks worth of IVS to try and keep any bugs at bay and he will have that every 3 months now.

They have also put him on the brown steroid inhaler as a preventer because he has been very wheezy lately.

Now when I updated last month that we were waiting on MRI results, well we got a call a few weeks ago to ask me to go up to hospital as they wanted to talk to me. They told me that they had found fluid at the back of his brain and a mass at the top of his neck that they could not see properly, so they needed to do a scan of Alan’s spine. What a two weeks it was – we had surgery one week and the scan the following, and obviously we were worried out our minds. We went for the scan but they did not say a thing, only that the results would be available in a few days. Alan was so so brave. It took 2 hours to do the scan and he had to lie very still. We waited a week and no news, so last Friday I could not take the wait anymore and I rang the hospital. Our nurse called Yorkhill and they said the results were available but the neurologist had not looked at it, so she was emailing him. Monday was the bank holiday so there was nothing, but on Tuesday the hospital rang to ask if we could go up on Friday the 3rd, so of course we agreed.

We went and the neurologist told us that Alan had a Chiari 1 malformation, with a Syrinx. This means for Alan, that the part that joins his brain and spinal column has a malformation and part of his brain is through the hole, the part that controls his movement. It is so tight that it has caused a syrinx, which is a build up of fluid on his spinal cord. They are referring him to a specialist hospital in Glasgow for him to have surgery on his brain and spinal cord. We are shocked and are very very worried. The headaches he has been having is a sign of this condition, but if they don’t do the operation it could leave Alan paralyzed and we do not want that at all. He already has more than enough to deal with and now all this.

He said to me last night he is sick of hospitals, but there is nothing I can do to stop this. Please keep him in your thoughts and he would really appreciate any cards anyone can send him. I just want to give him a boost and let him know we are all thinking of him.

A huge thank you to everyone who has sent posty to Alan this month, and for all the gifts he has received – huge thanks.

Update 30th April 2010

Alan has been having such a hard time lately, it’s been never ending.

He went up to the specialist hospital and had a CT scan and also an MRI scan but we are still waiting on the results. They are checking his chest because its not as good as it should be, and they also think his sinuses need to be all washed out under anesthetic. They also have discovered that Alan is diabetic – not normal diabetes though – its CF related. This means he needs to have insulin and we have to check his blood sugars before and after every meal. Alan is coping quite well with it, but it’s a lot to get used to.

He is also going in for a operation on the 13th May to have his bowel repaired and I’m really hopeful it will make it easier him. He also has 2 appointments to attend at the eye clinic as he has been having bad headaches and blurry vision; they think it might be because of his blood sugars.

I would like to thank everyone who has sent emails, letters, cards and gifts to Alan this month. He has so enjoyed receiving them all, especially when he has not been so well. We have received lots of email from people from the TV show. To everyone – a HUGE thank you as it has really brightened Alan’s and our lives; there are some really kind people out there.

A huge thank you to Kim Lawerance as she has been so kind and considerate to Alan and has sent him lots of things over the month including a jigsaw in parts of the world with books to match it, so thank you very much. To Jessica, thanks for the cards, and to Valerie, Kate Dee and to Kaden. A huge thanks to Stuart for the pictures and the scarf from the Rangers final, it was so kind of you. Sorry to everyone I have not mentioned, but we really appreciate your support.

Update 21st April 2010

Alan has be diagnosed with CF related Diabetes and now requires insulin every day. He also is having surgery on his bottom on the 13th May and he is struggling a bit.

Update 10th March 2010

Sorry for the late update. Alan had the specialist yesterday from the hospital in Glasgow to review his annual review results and I have to say it came as a huge shock to me and I’m finding it very difficult to come to terms with.

As you all know, every month I’m telling you that Alan has some sort of infection and our own hospital have always thought that it is upper respitory infections and they have given him antibiotics to combat them. However, yesterday the consultant hit us with the bombshell that Alan’s lungs have significant changes since last year and I can hardly believe it. They score them out of 25 for the condition of their lungs and Alan only scored 15. He is only 7 so that is not a good score at all. I’m gutted.

They are also sending him for an mri scan to have a detailed look at his lungs and sinus system. They are putting him to sleep to deep wash all his sinuses to try to prevent infections or to wash out any bugs that are lurking.

He has also been referred to the optromitist as he has been having double vision and headaches and not seeing his work very well. He had his eyes tested and it’s not his eyes so they are investigating that.

He went to see the surgeon last week due to the fact he is having a rectal prolapse almost every time he goes to the toilet, so in the next few weeks the surgeons are going to try to repair it or if necessary remove a bit of his bowel to stop this happening. He suffered from it before and they repaired it, but until they actually have a look they won’t know.

It’s been a very stressful start to the year and I’d like to say to everyone who sends mail and smiles that I am eternally grateful. It really brings smiles to us all knowing people care and take the time to write to us.

Update 10th February 2010

Alan got his line taken out yesterday, his 2 weeks of IV’S are finished and it has made him feel a lot better in himself. He got his results from his glucose tolerance test and his levels are a little high and they have to be monitored for a month to see what the results are. He has also been having rectal prolapses again so the doctor has referred him to the surgeon to repair it again. Last time we saw the surgeon he said that a part of his bowel would need to be taken out so we are just waiting on an appointment to come through.

It seems to be one thing after another for Alan, poor wee soul, but although looking at him I can see in his eyes he gets down, when you ask him he never ever complains. He is a little star and I am so proud of him.

He got a new Star Wars toy yesterday for being so brave – he loves Star Wars at the moment.

Update 26th January 2010

Alan has been ill and is struggling with lots of infections and he is so tired, so we are being admitted tomorrow for 2 weeks worth of IV’S. Hopefully it will make him feel better. They are also testing him for diabetes. We have so much happening and Alan is so sad and down, but Post Pals really cheer him up so thank you.

I will do a proper update soon with thank you’s for Alan’s Christmas post.

Update 3rd December 2009

Sorry for the short update this month, Alan has had a very rough month with infections that we just can’t seem to get rid of at all.

He got his swine flu jag this week too and it has knocked him for six, his arm is really sore and his neck is sore. I will update a proper update next month.

May I take this chance to thank everyone over the year who has taken the time to write to Alan, it really makes his day and it brings such joy to his life, we are blessed to have Post Pals in our lives.

Wishing everyone and their families on Post Pals a very Happy Christmas.

Update 31st October 2009

Alan has had a month of fighting an infection we just can’t seem to shift. He has a cough that would frighten you and its keeping him awake at night and making him feel tired and he has not got much energy. I’m really hoping they are going to get this under control soon as it is hard going for him when he feels this way.

He had a Halloween party yesterday and dressed up as a monkey. He had a really good time.

He is still trying really hard at school and managed to get 9 out of 10 this week for spelling. He also got a certificate for topic work and pencil and bookmark. He also passed his Level A maths and I am really proud of him doing so well and coping with feeling so horrible.

We went to the cinema this month to see Up in 3D. It was really good and I enjoyed it as much as Alan and Amy.

We wish everyone a happy Halloween and we thank Post Pals and everyone who writes to Alan and Amy. We are blessed.

Thank you to everyone who has sent Alan post this month, we really do appreciate it. To Jessica, Helen, Kim, Maria, Sarah, Kate Dee, Sami, Valerie, Margaret from America, and Lucy by email. Thank you all. To Post Pals for the DS game and thank you and for the angels of hope.

Update 1st October 2009

Alan has had a up and down month. He had an infection at the beginning of the month and then just before his birthday he began to feel under the weather and was very sick, but he seemed to pick up. Now he is back to being ill again, he has been coping with an infection but today it has got on top of him. He was feeling a bit yucky this morning but went to his friends and his mum had to bring him home. He was the colour of a ghost, i gave him some calpol and he is tucked up in bed. I hope he will pick up soon, i will ring the hospital in the morning for the doctor to have a look at him.

He has celebrated a birthday, he was 7 and he had a fab day. He got some lovely gifts, he got a dareway which is a battery operated toy you stand on and it moves back and forward – he loves it.

We also have parents’ night tomorrow to see how he is getting on, they are doing their topic on castles and he loves every minute of it.

To everyone who sent Alan a card or a gift for his birthday, thank you all so much, we really appreciate it. To Hayley Thorn, it was so nice to hear from you, to Kate Dee, Fiona, Sami, Tracey, Charlie (if you email Alan your address he has a letter for you). Rachael and Dave (happy birthday to you Rachael), June and David Junko, Rachael, Jenny, Michael and Maria, Helen (thank you for the card and gift), Jessica for the card and gift and for all her support, to Kim Ginger (your present and card was really appreciated and your cards are so cool) and to Valerie, thank you for everything, you are so kind to all of us, to Vikki thank you for the card you sent Alan, they were really nice words.

Update 30th August 2009

Alan has had a up and down month. He has had this haemophillis bug for weeks and can’t shake it. He has had an awful cough and a runny nose for weeks and we are waiting until Monday for a swab to come back. The last one we handed in got lost somewhere so it has been a waiting game for the last 2 weeks.

He also went back to school on the 17th and he has settled in not too badly, just the tablet taking incident, and when he is at school he has real issues with going to the toilet so with the schools help we are working through that. He also has been happy to be back at school with his friends and he really likes his teacher so that is a real bonus.

He is looking forward to his birthday in September; i can hardly believe he is going to be 7. We have the hospital on the15th for a port flush and a check up so hopefully it will go well and i will update next month.

A massive thankyou to everyone who sent Alan posty this month, they really have been a god-send. He has had cards from America and Cuba. To Natalie, Kara and Osmany from Cuba, to the crafty place challenge ladies thank you so much the cards are beautiful, to Kim Ginger, Sarah, Hayley, Kate Dee, Sami, Jessica for her regular post (and love and support – we missed you when you were on holiday), and to Valerie thank you so much for all your mail and gifts you send to the kids and to me, you are a wonderful person and we also missed you very much when you were on holiday.

Update 3rd August 2009

Alan has had a difficult month; he has been fighting a infection that he can’t seem to shift. We are waiting on results from the lab to see what treatment they will do now, as 2 weeks of antibiotics hasn’t seemed to move it.

He has also has been struggling with CF, he has been very tearful and gets really upset saying he wants to be a normal boy and that he doesn’t want to take tablets anymore. This has been heartbreaking and hard to deal with for all of us. The psychologist came out on Tuesday and had a chat with him, explaining why he needs to take tablets and showed him what they do in his tummy. She was brilliant with him. She is taking it slowly so we are seeing her again. He just keeps saying he wants to be normal and that he is not happy having CF. Heartbreaking.

He goes back to school in 2 weeks. We broke up much earlier than the schools down south, so hopefully when he goes back he will get back into the routine of school and the upset will pass. I think some of the children have been asking him about why he needs to take tablets and this is making him feel uncomfortable, so fingers crossed this will not get worse.

Post Pals have been a godsend. I can’t tell you how happy Alan is when he gets cards and this makes him feel special and loved, so to everyone who has taken the time since Alan has been on Post Pals – a huge THANKYOU.

Thanks to everyone who has sent Alan and Amy posty this month. To Valerie for all her love and support, to Jessica for all her cards, to Kim Ginger for her cards, dinosaur book and spy kit and the gift for Amy, to Jackie, and Jenny Clift too. Thank you all ever so much.

Update 30th June 2009

I really did speak too soon last month when I said Alan had a good month! He developed a terrible cough and could not even lift his head off his pillow; it really hit him for six. I rang the hospital and they saw him straight away. After an examination and a throat swab, they thought he had an infection and they would give him a covering antibiotic until his swab came back. It seemed to pick him up and the nurse rang to say he had an infection and not one of the bad bugs, thank goodness. He was to take the antibiotic for 2 weeks and be re swabbed. He is still coughing and is quite breathless at times, although when it’s really warm and humid he gets like that anyway. He seems to be a lot better, although the swab is not clear yet and we are persevering with another 2 weeks of meds.

I am hopeful he will stay the way he is, because on 1st July we are going to Disneyland Paris for a week. We are all so excited and looking forward to it. Alan is very excited about meeting Mickey Mouse! He also stops for his school holidays on Tuesday for 6 weeks and then will go into primary 3. He is looking forward to the summer holidays. We joined Historic Scotland and are visiting castles. We went to Edinburgh castle and had lots of fun and we are hoping to do lots more in the summer holidays.

Every month I am astounded by people’s kindness and love that they send. To Jessica – a huge thank you for all the cards and the keyring you sent Alan, we really appreciate it. To Valerie – thank you for all the cards you send the children, it really brightens their day receiving them. Thank you for the books and pencils and the sweet, they will be well used. The kids look forward to receiving your cards and I would also like to thank you for the beautiful card you sent me too. I really appreciated it and it made me feel special. To Sarah for her cards and to Kim for her cards, they are out of this world, especially the dinosaur one. Thanks to Michael and Maria, to Sami for the card and motorbike, and to Dispina for the card and postcard. Thank you all so much, our days are brightened by you all and i really thank you.

Update 31st May 2009

Alan has had a really good month health wise with no problems for the first time in years – i hope im not tempting fate saying this. He has had a busy month with staying at his aunts for the first time and he really enjoyed it. He was also away on a school trip to the lifeboats and had a great day as they got on the boats and he got to sit in the drivers seat. He also got his report card on Friday and it made my heart burst as he’s doing really well and trying his best and that is all we can ask of him. He is looking forward to his holiday in July and is busy saving his pennies, looking for jobs to do that end up costing me a fortune!

A huge thanks to Jessica for the brilliant balloon she sent Alan. He absolutely loves it and it really made his day receiving it. Thanks also for all her cards and love and support. To Sarah, thanks so much for sending Amy and Alan a gift. To Valerie, thanks for your cards and support. Thank you to Kim Ginger. To the Fullman family, thank you for sending Alan a Doctor Who torch – he takes it to bed with him.

Update 30th April 2009

Alan has had a reasonable month this month. He has been able to go out to play at school since the weather is a bit better. We had parents’ night and Alan got a fantastic report, he has come on so well this year at school and copes remarkably well. Kim sent him a beautiful 3D card for doing so well and he adores it as it’s a 3D dinosaur. We took him to the museum where he saw a dinosaur exhibition and he loved it. We also went to the cinema to see Monsters v Aliens in 3D and it was amazing to watch.

This month i also let Alan stay at his aunts for the first time. Due to his meds i never let anyone else do it, but he was keen to go and had a great time and it meant Alan and i had a bit of time to ourselves. He is staying again next weekend and Alan and i are going away for the weekend because Amy is in London with school.

Alan has hospital in 2 weeks for check up and i will update next month or on my blog.

A huge thanks to everyone who sent Alan and Amy mail this month. To James, Kim, Helen, Maria and Michael, Sami and Aisha for their cards. To Valerie for the Army hat, stickers and cards to both Amy and Alan, to Ria for her letter and picture, to Alaison for her postcard from New Zealand, to Shirley for her cards, and a heartfelt thanks to Jessica for all her letters. To everyone who has taken the time and thought to sent a card or gift, they mean so much to them and they really enjoy receiving them. Amy sends cards to other pals regularly and Alan replies to every letter he receives. Thanks to Post Pals for sending the bear as Alan loves it and sleeps with it every night. Also for the egg – we are busy growing it and although there is nothing to see yet, we are waiting and hoping.

Update 1st April 2009

Alan has had a busy month. Some of his results from his annual review are back so they have adjusted his meds a little – some of his vitamin levels were a bit low so they have upped them a little. He saw the ENT too as his ears are really sore all the time and they are over sensitive. They hope he will grow out of it and I hope so too because the things we take for granted really hurt him and the bell at school leaves him in agony.

He has been really trying at school to get 10 out of 10 in his spelling test and finally he made it. He was so chuffed and we were proud of him (he got his well earned playstation game). Jessica sent him a certificate and he has it on his wall with pride.

Alan and Amy made me breakfast in bed on Mother’s Day and it was lovely. They got me cards, a teddy and chocolates. It was a lovely treat.

We also had sad news as one of our friends died. We all took it hard and Alan finds it difficult to deal with. Although he is only 6, he has lost his papa, gran, and now our friend, in 2 years and words are hard to find to explain this, but we just try our best.

Health wise, Alan is struggling with a bug in his throat but managing as best he can. CF gets me down sometimes.

On a happier note, we are booked to go to Disneyland Paris in July for a week. Alan is so excited and so am I! He has wished for this for so long and now it is happening.

A huge thank you to everyone who wrote to Alan and Amy this month, they really love receiving post. A big thanks to Sarah who sent me a card this month as it really touched me. To Jessica for all her letters and gifts. To Helen for the card and the tapes she sent Alan. To the person who sent the scarves, and to everyone else who wrote letters and cards. Thanks Post Pals for cuddles the bear – Alan has slept with it every night since he got it. To Val for the posters and to Kim for the bunny making kit. A big thank you, it is really appreciated.

Update 1st March 2009

Alan had a bug at the start of February which really made him feel ill but as normal he bounced back and didn’t need to miss too much school as it was half term. I thought i had taken his bug as i felt terrible but it turned out to be shingles which was really nasty and i looked and felt awful. Alan wanted to see Bolt 3D but i wasn’t well enough to take him so his big sister came to the rescue and the two of them went to Frankie and Bennys first for dinner then to the cinema and he had a great time.

He has been at a few birthday parties this month as his cousin was 5 and had a party and his friend from school was 6 and he was at the bowling for his party. He also was out with his friend from school for his dinner and then to the soft play where he had a ball.

We have had workmen in fitting a shower rather than a bath for us to make things easier when Alan’s port is accessed. The occupational therapist helped us get it done and it has made life a bit easier. It means Alan can get a shower in the morning quickly rather than me having to put him in a bath because he sweats so badly and I’m really pleased it is done.

Alan has to go to hospital on Wednesday for his lung function test to finish off his annual review, and then hopefully we will get all the results the following week. He had his liver scan done but they don’t give us the result until they have it all done. I hope it has all gone well. We have ear, nose and throat clinic this month too as Alan’s ears are still not completely right since his operation and they want to check that again. His ears are very very sensitive and a noise we don’t think is loud is very loud to him. When it’s the school bell he stands with his fingers in his ears. We will update you next month on his results.

A huge thank you to everyone who took the time to write to Alan and Amy this month, as always he loves receiving them. A huge thank you to Jessica for all her letters, Shirley for the letter and the card making things you sent to Alan (he has done you a card and i will post it off to you), to Rachel for her card and the stickers she sent, to Kim who sent Alan a card and a bolt magazine (thank you, he loved it), Grace and Linus for the post card, Ria for the lovely letter she sent us, Valerie for the postcard, Kate Dee for the card and to Lu, June and David Junko, Maria and Michael and to everyone else who sent Alan a valentine card, a huge thank you as it made him feel extra loved. He also received a postcard from Samuel in Finland and would like to reply to him as he was so happy receive it, but it had no reply address.

Update 2nd February 2009

Alan has had a up and down month. He had his annual review in January but it’s a bit early to get the results yet. He has had terrible nose bleeds this month which was very scary for both of us as it happened in the morning when he woke up and scared us dreadfully but we coped. Alan is also suffering from a terribly sore throat and a dreadful cough at present and is a bit down in the dumps with it.

Alan had a birthday party this month – he went ice skating for the first time and he really did enjoy it. He’s also working hard at school and on a Friday they are now getting spelling tests. At first he was getting 4 out of 10 but last week he got 8 and he was so pleased with himself that we bought him a toy as a treat for doing so well. He is working towards getting 10 out of 10 and when he does his special treat is a new playstation game – he really wants transformers.

A huge thanks to everyone who sent Alan a card or gift this month. He enjoys receiving them very much. Thanks to Hayley for the pencil case and snow globe from London, he loves it. To Helen for the gifts for Alan and Amy, to Post Pals for the gifts not only for Alan but the yummy chocolates for me too – I really did enjoy them although I shared them so I didn’t feel guilty eating them with all the healthy eating at this time of year. To Jessica for the cards you send every week and the great pictures of London zoo and the postcards. To Shirl, Alan loves your cards and he would like to send you one back if you wouldn’t mind putting an address in please. To Rachel, thank you so much for Alan’s bear card, he loves it. Thanks Sami for the card too. Thank you to Kim Ginger for the Chinese pack of fortune cookies, a book mark, a scroll of the year he was born under, and a pair of chopsticks. He had great fun trying to use them to eat his Chinese meal, so a big thank you for that as he really loved it.

Update 31st December 2008

Alan has had a very busy month. Health wise he is doing ok just now, though he had a port flush in the middle of December, but we don’t need to go back to hospital until 16th January.

We went to see the Wizard of Oz at the Citizens Theatre and Alan got invited to meet the cast. Before Alan was on Post Pals he won a competition in our Scottish national paper – he was awarded the award Our Little Hero and through this got invited to meet the cast. He met Dorothy and the Lion and got to wear the Tin Man’s hat. It was a really lovely afternoon.

We also went to see him in his school show – it was really good and the kids did well. Alan was a bear in the play ‘The little angel’.

During December Alan was so excited waiting for Santa to come. He has been really aware of it all this year and enjoyed the build up to the big day. The letters and gifts from the reindeers really made him feel ever so special and he has them proudly hanging in his bedroom. He got a Rudolph nose and antlers in the Rudolph card and wears them with such pride.

He received lots of cards and gifts from people and your kindness and generosity is much appreciated. It certainly makes him and his big sister feel special.

To Lu, thank you for sending us cards and the letters you sent are really appreciated and very special to us. To June and David Junko, Despina, Kristina, and the Homberg family – these people all sent cards from abroad, so thank you for taking the time to make Alan smile. Thank you to Sarah, Maria, Hayley, Julie, Jessica, Jenny, Helen B, Helen T, Shirley, and Kate D, thank you all for the cards. To the person who sent Alan the letter from Santa – it made his day! He had been asking me about Santa’s good list and when he got the letter he turned to me and said ‘mum i must be on the good list’. It was a very special moment. To Alan and Amy’s elves, thank you very much for their gifts. To Amy’s elf, Jessica, and the person who sent her 4 gifts, thank you so much, she loved everything. To Alan’s elf, Mrs Whittaker, thank you ever so much, Alan loved all his gifts. Also to the person who never put a name on it, thank you. To the Post Pal team, thank you for the gifts. To Grace and Linus, thank you for the book. To Julie Barrett for sending a gift to Alan and Amy. To Jessica, your generosity is really appreciated. Alan looks forward to receiving your cards.

A huge thank you to everyone who has taken the time to send Alan anything right from the time he joined Post Pals. We really do look forward to receiving your post and Alan enjoys replying to them.

Wishing everyone a happy and healthy New Year.

Update 28th November 2008

Alan has had quite a good month and recovered really well from his surgery last month. He is back to his old self and his ears are very much improved so it was all worth it.

He came home last week from school with a certificate for “PUPIL OF THE MONTH” which he got for trying really hard in class and completing all his tasks. I can’t express how proud of him i am, he really has come out his shell since he started at his new school and it is wonderful to see his teachers getting the best out of him.

We have just returned from the pantomime (mother goose) and we all really enjoyed it. We also have a busy weekend ahead as we have Alan’s school Christmas fare tomorrow morning, then Alan has a birthday party in the afternoon, then we are going to see the Wizard of Oz tomorrow night and we’re really looking forward to it.

Alan is having a school concert this year and is playing the middle size bear and his class are singing a song so he has been practicing it and we’re looking forward to see him performing it.

Alan is so excited this year about Christmas and is asking me everyday when the advent calendar starts, so when Monday comes we really are on the count down.

A big thank you to everyone who sent Alan posty this month as it really does light up his day (and ours) knowing that people out there care and think about him. A big thanks to Jessica B, Sami, Karen M, Grace and Linus, Kate Dee, and June Junko and her husband David. Thank you all, it really means a lot to us. Also Thanks to Lu who emails us every week. A big thanks to Jessica for the gift she sent Alan this month, Alan really loved it and had lots of fun building it up with his daddy.

I would like to take the opportunity to thank everyone who has written to Alan and to wish everyone a very merry Christmas. Post Pals have really enriched our lives over the short time Alan has been a pal – we have had lots of different people write to Alan and it is very heartwarming to know people our there really care.

Update 1st November 2008

Alan’s month started off with us finding out that he would require surgery on his ears. It came as a relief in one hand and in the other we were really worried because they had to put him to sleep. His operation took place on the 9th October and it all went according to plan. They removed the gromets from his ears and cleaned his ears all out and he had a week off school and has recovered well from it. While he was off school he has been making model airplanes and painting them with his dad then hanging them from his ceiling in his bedroom and he really enjoys making them. His left ear is still a bit weepy and when we had a hospital appointment on Tuesday they were telling us his left ear is in really poor condition inside and the specialist will see us to see what they can do about it. I just really hope it’s soon. Apart from his ear the hospital is pleased with him as his weight is still the same as last month although he has grown a tiny bit, his lung function this month was really good and they have given us a physio belt for Alan to wear when he is exercising and to say he hates it is a understatement!

We had parents’ night for Alan and the teachers are really delighted with the way he has settled in. His work was really good and his reading has come on since last year. They say that even though he has a lot of medicine to take at school and sometimes he cant get out to play or take gym, he never complains and is a joy to have in the class. I came out feeling really proud of him.

Alan has been really looking forward to Halloween this month and has been really excited on the build up to it. He was at a Halloween party at school and dressed up as a soldier and looked really good. He went out trick or treating with his sister and cousin and enjoyed it.

A huge thank you to everyone who sent Alan cards and gifts this month, they really do cheer him up when he gets post. Thank you to Hayley Thorn, Helen, Julie, Karen (sami), Grace and Linus, Jessica, Maria and Michael and to Post Pals for the Halloween parcels. Alan loved receiving them all and i hope i have not missed anyone as I’m still trying to find a system to remember everyone. Thanks also to Lu who emails us every week to see how we are.

Update 1st October 2008

Alan had a hospital visit today about his ears. They were hoping they were going to clean them out, but no, Alan is going to require surgery to remove the gromits in his ears and relieve the pressure in his ears. The operation has to happen either next week or the week after, we are just waiting on the Doctor’s secretary to get back to us. We are worried but know it is needed to stop the running in his ears.

Update 28th September 2008

Alan has had quite a good month apart from his runny ear which is still causing him problems. It has been a month now and it’s still running. We have had 2 lots of antibiotics with no success, so during a hospital visit on Tuesday our consultant called E.N.T. They seam to think that he has an infection in the gromit and that it will need flushed to clear it. To do this they inject into his ear to try to wash it out and stop the running – it sounds quite painful. We have to go to have it done on Wednesday and I have to say I’m not looking forward to it!

Alan has gained 2.5kg and grown 1.5cm since our last hospital visit and they are really pleased with him.

Alan celebrated his 6th birthday on the 24th and he had a great day. He got lots of nice presents which included a remote control tank, a camcorder, army things, a projector for his room and much more. He invited 6 of his friends to the ten pin bowling then we went to wimpy for a burger and we had his cake we had a army tank cake for him he was over the moon with it.

He has settled in really well at his new school and his class had to choose a pupil council member and Alan was chosen. He was so excited when his dad and I picked him up! He has to go to the meetings and be the spokesperson for his class – I’m so proud of him. He used to be so shy but he has grown into a confident, independent wee boy.

We are looking forward to the beginning of the month when his big sister turns 18. We are going out for a family dinner.

Thank you to everyone who has sent Alan mail this month. Thank you to Hayley Thorn, Jessica, Helen, Linda B, Maria ,Jenny, Sami, Julie, St Mathews Sunday school, Maddie, Grace and Linus, Jennifer, Jade and Juno from the USA. Thanks you to everyone who sent birthday cards and gifts to him as he loves getting them, they really make his day. Also, thank you to Ms Lu who emails us every week to see how we are doing.

Update 30th August 2008

Alan has had quite a good month. He visited the safari park and saw all the animals which he really enjoyed. Alan loves visiting the cinema and we have been a few times this month. We went to see Wall-e, The Mummy, Batman and The Hulk, all of which he really enjoyed. We also had a festival where we live and we went and saw the big parade. It had horses and bands, dancers, people dressed up, and he really loved watching it. We saw a tiny little pony and that was Alan’s favourite part.

He also started a new school and has moved into primary 2. He has made lots of new friends and has settled really well. I was a bit apprehensive about him starting, teaching someone new to do his medication and worrying if they would do it correctly, but Alan’s helper has picked it up really well.

Alan has a bit of a cough and a very runny ear at the moment. The hospital has started him on antibiotics so hopefully he will start to feel better soon. We are hoping he is well for his birthday.

Thank you to everyone who sent Alan cards as he really loves receiving them. To Julie Barret, Kate Dee, Karen (Sami) for her motorbike cards, Helen for her fish card and the lovely fish you sent Alan – they are up in his room, so thank you. Maddie (Vikki’s Nan) and Karen thank you for your postcards. To Hayley Thorn – a big thank you for all the cards you sent Alan, he loved them all, especially the tiger card. Susan for the teddy bear card with the medal, Alan loved it, so thank you. Thank you to Grace for the bubbles and card you sent Alan, he really loved them and they helped with his physio too. To Jessica for Alan’s discover and dig toy – he really loved it and he spent the morning uncovering his treasure, thank you. Big thanks to everyone who emailed Alan too. Alan has been replying to the cards he has received and it’s helping his writing so it’s good when there is an address on it.

Post Pals is a wonderful organisation that has put a smile on Alan’s face when he receives post. When he is under the weather, seeing him smile means the world to us.

Continue reading...


17 March 2011

Please DON’T send food to Adam as he is nil by mouth.

Story written 2011

Adam was born by emergency c-section on 2nd March 2007 after becoming distressed before labour. He was born blue and floppy, and required immediate resuscitation. Once revived Adam was still very unwell and was immediately sent from North Tyneside to Middlesborough James Cook Hospital. He spent 2 weeks in PICU, being treated for hypoglycaemia, pulmonary hypertension, seizures and lung dysfunction as he had aspirated meconium prior to birth.

Three weeks after birth, Adam suffered more seizures and became critically ill. He was admitted to Newcastle General Hospital, where he was discovered to have had 2 haemorrhages in his brain since birth. Adam regained consciousness after 7 days but continued to be very poorly, and remained in hospital for a further 10 weeks. He has since had two further bleeds in his brain.

Since discharge, Adam has been diagnosed with spastic quadriplegic cerebral palsy, affecting his right arm most severely and also making him unable to sit unaided, stand, crawl or walk. He is making slow but steady progress in learning how to make his body work the way he wants it to. He is unable to form words, but enjoys making quiet noises. Adam has bilateral partial lamellar cataracts, making it difficult to focus on moving objects. Adam has feeding difficulties and is unable to swallow without aspiration into his lungs. He often has chest infections and is regularly hospitalised for treatment. In January 2010 he had a gastrostomy fitted, and now receives all his nutrition via a feeding tube. Excessive stress and medication has meant Adam has developed stomach ulcers, which sometimes bleed. He also suffers from epilepsy, with severe tonic clonic seizures, leading to a trip to A&E and usually a stay in PICU.

Despite all his troubles, Adam is a happy, lively boy who makes friends everywhere he goes. His grins and giggles keep his stressed parents and his loving little sister smiling.

Update 7th April 2018

Adam had eye surgery in December and January to remove his many cataracts and hopefully increase the amount of light getting in. Surgery went well and he was allowed home quite quickly both times. It has taken a while,but we think his general vision has improved,although he will never see very well due to nerve damage. Adam is still on the waiting list for surgery or further treatment on his knees and ankles, and under observation for the straightness of his spine and hips. He still experiences a lot of pain and doesn’t sleep well. Nevertheless he keeps a smile on his face, enjoys days out, rugby matches and a constant supply of superhero films at the cinema. He had his 11th birthday in March, and received so many amazing cards and gifts. Thank you everyone!

Hannah is awaiting further treatment for her liver and stomach problems. She is under the weather most days but carries on regardless. She is continuing to fundraise for lots of charities with her project Hannah’s Helping Hand, and particularly enjoyed making Christmas decorations for Post Pals in December. This month she is promoting Autism awareness at school. Hannah was 9 on April 6th, and she too received so much lovely post. Thank you again!

Very sadly, Adam’s best friend recently passed away. It was very sudden and he is going to miss her very much. We are all heartbroken for her family. Hannah’s best friend is very seriously ill at the moment and so we are doing all we can to stay positive and have lots of fun.
We are so very grateful to everyone who sends post. The last few months haven’t been easy for A & H, and all that love in the post has been a great comfort.

We are looking forward to the Post Pals Chessington Trip (especially Hannah who is nuts about rollercoasters).
Thank you Post Pals for everything you do.

Update 15th October 2017

Adam is still waiting for leg, knee and eye surgery. He is also back on the waiting list for hip and spine consultants.
As the winter approaches we are keeping a close eye out for chest and ear infections . He remains his happy self most of the time.
Hannah has been diagnosed with liver disease and autism spectrum disorder. She is working hard to cope with and overcome her difficulties, and is continuing with her monthly charity work with Hannah’s Helping Hand. In November she will be fundraising for Post Pals.

Update 25th July 2017

In the last few months, Adam’s health has been going downhill as he seems to be in more pain than ever. The tightness of his knee/leg/ankle muscles is now too bad and medication isn’t helping.

We also learned recently that his eye sight has deteriorated significantly and his cataracts are now obscuring most of his central vision. Adam is relying more and more on sound and touch to make sense of the world. We are very grateful for all his audible post, as we need to keep him constantly supplied with new stories, and of course as he isn’t keen on sleep, it helps us through the long nights!

Due to all this, Adam will be having a number of surgeries in the coming months (waiting lists permitting) on his legs and eyes. Adam’s history of respiratory problems means the doctors don’t suggest these things lightly, but we hope that the stress, discomfort and hospital stays will reap great rewards for Adam in the longer term.

Despite everything, Adam keeps cheerful. He has been awarded a second swimming qualification at school and was recently the winner of a North Tyneside schools Star Award for his “Can Do” attitude and positivity. The highlight of his year however, was definitely meeting Mister Maker after his Whitley Bay show!

Hannah continues to be unwell. She has been diagnosed with a liver disorder (we don’t know what yet) and has been having lots of tests. She hates them, gets very stressed, and as a result her anxiety has gone through the roof.

She continues to pursue her charitable project Hannah’s Helping Hand (she has a page on FB), and recently celebrated the 2 year anniversary with a tea party for our local carers centre , the 31st good cause she has supported since June 2015. In July she overcame her fears and did a zip wire challenge for Calvert Trust, raising over £200.

In March, Hannah was honoured with a Points of Light award from the Prime Minister, for her outstanding voluntary work and contribution to society. Of course,  we are extremely proud and very very happy for her.

Thank you everyone who sends post. The terrible two have received some wonderful things, including, to mention but a few, amazing paper cuts (Hannah hugs her Olly Murs every day), Adam’s fantastic Doctor Who cross stitch, letters and postcards from all over the world, books, teddies and very special extra smiles and monthly project parcels.

Thank you everyone, from the bottom of our hearts.

Update 6th January 2017

Happy New Year to everyone from all of us!
Since our last update, Adam has been having more difficulty with his epilepsy, which is still difficult to control, and constant pain in his legs and arms. He is now seeing a new set of neurology/orthopaedic consultants to try to find an answer, hopefully without the need for surgery. Thankfully, his latest x-rays have come back ok, so we can put his spinal problems aside for now.

Adam continues to be brave and keep smiling, despite some let downs recently. He had another set of tests to see if he can return to taking food and drink orally, but we were disappointed. His swallow is still very unsafe so he will continue to be fed via his gastrostomy (feeding tube directly into his stomach). This is the most upsetting recent development, as Adam did once take food orally (he has been nil by mouth for over 6 years), and is really desperate to get back to eating chocolate lollipops, mashed potato and whippy ice cream. He will have more tests later this year, so we remain ever hopeful.

Hannah continues to make us proud. She is still unwell, with an as-yet undiagnosed illness, causing her a great deal of pain and sleeplessness. She is having lots of tests and scans, and despite being terrified of needles she is always brave.
Hannah has carried on with her charity project Hannah’s Helping Hand, which is now in its third year. In 2016 she helped 17 charities and good causes and raised over £1700 with her friends. We have lots of plans for 2017 including a sponsored run and walk, craft sales, baking and even possibly a zip wire if H gets the medical all clear!
In December, Hannah attended the Chronicle Champions Awards, as a shortlisted nominee in the Champion Fundraiser category. These are awards in the North East area for people who have made an outstanding contribution to their local community. Hannah was shortlisted alongside two adults, and, although she didn’t win, we all had an amazing night and Hannah got the moment in the spotlight she truly deserves.

We are very grateful to everyone who supports Adam and Hannah by sending them post. Christmas was amazing for them, with all their cards and gifts making them both feel brighter on their bad days, and certainly very loved. Another big thank you to all the people who fundraise for Post Pals. We were very lucky to be included in the Chessington Trip, and had an unforgettable experience.

We wish everyone a peaceful, happy and healthy 2017!

Update 6th June 2016

Thank you everyone for all the lovely post and emails Adam and Hannah have received this month. Adam is doing ok but is in a great deal of pain and still having seizures. He had one particularly bad incident where we thought he was having a stroke and was very poorly, but he bounced back as he tends to do and tries to stay strong.

Hannah is trying her best but is still struggling with ill health. She is constantly tired and fatigued in her limbs, and struggles to sleep at night and stay awake during the day. She has seen a consultant and is waiting for tests. Her Year 2 SATS were a little stressful, as she has difficulty concentrating and can’t cope with worry very well.  Despite this she is continuing with her project Hannah’s Helping Hand and enjoying updating her blog ( and being of help to the community.
We won’t be able to come to the Post Pals party but we wish everyone a wonderful time and a fantastic summer!

Update 12th January 2016

Adam  has had mixed health recently. Despite our hopes, his epilepsy is getting worse and it is becoming difficult to control. He seems to be in more pain and needing many more stretches and doses of painkillers  than ever before. He will be seeing various consultants in the next few months to try to make him better.On a positive note, we are managing to keep him out of hospital more, even when he is very under the weather. This is great because he often recovers much more quickly in the comfort of his own bed. Adam is trying hard, but finds day to day life very tiring , especially school. We keep him happy with endless Star Wars dvds and of course all his fantastic Post Pals post.

Hannah has been generally quite unwell for some time now, so we are waiting for her hospital appointment for tests. She keeps cheerful and is happy to devote all her energy to her charity project Hannah’s Helping Hand. Last year she helped 10 charities, and hopes to do even more this year.

Christmas was relaxed and mostly quiet and we all had a great time.

Adam and Hannah have received so much amazing post. We had to spread out opening them over many days of the Christmas period. Our heartfelt thanks go out to everyone who thought of our terrific twosome, and the people who email or message to keep in touch with how they are doing.

We send all our love to our friends at Post Pals and to everyone sending post to any of the Pals and siblings.

Update 13th September 2015

The summer has been ok for Adam, with fewer seizures and hospital trips, except for one scary day at school in July. We may (fingers crossed) be on the way to getting his epilepsy medication right, which will make a difference to Adam’s life.

Adam still struggles with pain in his knees and feet, but now it is also in his arms too. His muscles and tendons are just so tight that they constantly ache for him, plus the medication to ease them makes him sleepy and we have to fight to keep him awake some days!

As always though, Adam keeps a smile on his face and a bit of mischief twinkling in his eyes every day.

We had a lovely short break in Blackpool over the holidays. Hannah got to dance in the Tower Ballroom which she says was a highlight of her life. We all went to the top of the Tower, which Adam loved, and also went to the zoo.

Hannah has started year 2 at school and has been a little apprehensive. It’s a lot to take in but she is working hard and having fun.

Hannah has started a new project called Hannah’s Helping Hand. She is aiming to help at least one charity each month, so that she can make a difference and learn more about the world. So far, she has helped Marie Curie, the local food bank, a local community group called The 5p Bus, and Post Pals (of course). Post Pals is also the charity for December. This month she is doing a sponsored walk for the Alzheimer’s Society.

Thank you so much to everyone who sends post to Adam and Hannah. Every item really brightens up their days and ours. As Hannah puts it, you are ‘amazingly awesome!’

Update 4th April 2015

Adam has had his 8th birthday recently and received lots of lovely cards and gifts. He had a dinosaur themed party and was happy and healthy for the day!

Generally, not much has changed. Adam still struggles with his seizures, which disturb his sleep and upset him. He is also needing more pain relief for his legs, knees and ankles. He is still smiling though and trying his best. He is growing fast so already needs a new wheelchair etc. School is going ok, he is learning his alphabet and numbers, and simple reading.

Hannah is about to turn 6 at the beginning of April. She is growing up too fast! She is doing well at school, keeping cheerful and trying to help out more with Adam. She has chosen to learn all about Adam’s conditions so she can understand and do more for him. They remain the best of friends, they really do love each other very much.

Thank you, as always, to everyone who sends post to Adam and Hannah. Hannah is now responsible for reading letters to Adam, which they both enjoy.

Happy Easter everyone!

Update 3rd February 2015

Adam continues to keep smiling and tries hard every day. He is struggling with increased pain in his legs and still has a troublesome bowel. We are still trying to find a good balance of medication to control his seizures, but he is brave about it. He isn’t sleeping well, so we are listening to a lot of Paddington stories in the middle of the night.

Adam is doing well at school, especially in his swimming, which he loves. We are hoping to start introducing a little more solid food this year, as he is desperate to eat and not too happy watching other people enjoying their food. We have a few family treats lined up for the year to keep Adam and Hannah’s spirits up.

Hannah is working hard and enjoying school, and continues to be a loving, caring sister to Adam. We grow more and more proud of her every day.

Christmas was great, and very busy, and Adam stayed well for most of it. They loved their elf and reindeer letters and gifts.

The children have received so much lovely post and we want to say a massive thank you to everyone. Recently they were delighted by their special balloons sent by Post Pals. We had just that afternoon been in a car accident (everyone is fine apart from a little whiplash for me and damage to our brand new WAV) so they were brilliantly timed! Adam took his to school to share with his friends in the sensory area.

We think it is important that everyone who supports Post Pals knows how much of a difference their kindness makes. Not long after Adam joined, he was sent a Postman Pat cd, which he still listens to now (a lot) and is the one cd we always take to hospital because it is guaranteed to make him smile. He also received a fish card in his first week, which is on his bedroom door. He has a big “A” sent to him by a lovely friend which he keeps on his shelf and wants to hold everyday. Adam loves to look at the large collection of postcards he has amassed (his favourite is one of a donkey sent from Ireland). He also has some Makaton story books, and some wonderful Mr Men and Postman Pat books which were decorated to make them sensory books, which go around in his bag all the time. Hannah has a collage of her name and fairies on the wall by her bed, and of course her beloved baby Maria was a Post Pals gift too. And not forgetting Indie, our lovely dalmatian who has had many adventures with us. We have a little metal heart hanging from our bathroom mirror which makes me smile every time I see it, and there are so many other precious things which mean so much to Adam and Hannah, and to us. Thank you to everyone who sends post to our special two.

Happy New Year everyone. We hope 2015 will be your best year yet!

Update 2nd August 2014

Adam has been his usual happy and hard working self over the last few months. He is trying his best with his physio, although as he grows the tightness in his knees, ankles and toes, is getting worse and he is troubled by increasing pain. We are looking at options for stronger pain relief and hoping this won’t making him too sleepy. His posture is improving, as is his grip and extension of his right arm. He is spending more time in a standing frame, which is helping him with his shoulder and head control. All this effort is very tiring and he is usually exhausted when he gets home from school.

School continues to make Adam very happy. He is working hard at his communication and we are starting to chat using Makaton more. He is also using communication software on his iPad to make choices and greet people. He loves to be part of the conversation! It’s early days, but he’ll get there we hope. Adam is also getting started with a bit of reading and counting. He is very pleased with himself!

Recently, the biggest difficulty Adam faces on a daily basis is his epilepsy. It is becoming very difficult to keep his seizures under control so we are trying new combinations of medication in the hopes of finding the right one. As always, Adam tries his best to stay cheerful and makes us very proud.

Hannah recently finished her first year at school and is doing very well. She takes time out every day to talk, read or play with Adam, and they continue to be the best of friends (although Adam could possibly do without hearing Let It Go ten times a day).

Adam and Hannah receive so much lovely post and we are truly grateful. Hannah’s reading is good enough that she can now read Adam’s cards and letters to him. They are very cute together, opening their envelopes and getting excited. A massive thank you to you all for the kindness and love you show our brave two. Everything is appreciated and looked at over and over again.

Update 2nd February 2014

Happy New Year to everyone. We hope you had a lovely Christmas! Adam and Hannah enjoyed their Christmas very much (although Adam wasn’t too well) with lots of treats and so many wonderful Post Pals letters, cards and gifts.

There is mixed news about Adam recently. It is now clear that having the fundoplication surgery last year was one of the best decisions we ever made. He is keeping his feeds and meds down and putting on weight. It has been a pleasure buying him lots of new clothes in larger sizes and finally seeing him get a little bit of a tummy.

Adam has been in and out of hospital for short stays of one or two days, usually due to his epilepsy. He is having regular seizures which are quite frightening for him, and us. We are trying new combinations of medication to try to stabilise his condition, but it is a real balancing act between controlling seizures and not letting him get too drowsy (which is a side effect of most anti-epileptic drugs). He has recently been so badly affected that he is spending all day asleep. We will keep trying to find the answer! He is also struggling with increased pain in his limbs and continuing bowel problems.

However, Adam is a fighter and he keeps going whatever comes at him. He is trying very hard at school, with regular physio and speech therapy. He has started lessons in Rebound therapy (on the trampoline) which he loves, and he is a member of the after school Boccia club. Adam loves sport and seems to have a real talent for this one!

Adam now has an iPad and is learning to use communication software to give him the voice he so desperately wants. Adam has no spoken words so this, with practice and patience, will open up the world to him. He is finding the whole thing very exciting, although so far we can only manage yes/no answers, but it’s a start.

Hannah is now at first school and is doing well. She enjoys reading and writing the most. Adam and Hannah are the best of friends and Hannah is a great help to us in looking after her brother and cheering him up on his bad days. We are very proud of them. They really are our heroes and we would fall apart without their smiles.

We would like to say thank you, yet again, to all the kind people who send post to Adam and Hannah. At Christmas they were overwhelmed by the gifts and cards. Adam loved the reindeer letters and has so many new postcards. Thanks also to everyone who emails – Adam looks at them on his iPad and always smiles when he sees a message is for him. Adam and Hannah think of you all as their friends and everything they receive brings a smile to their faces.

Sending lots of love to you all.

Update 15th August 2013

Adam continues to do well after his surgery and is slowly starting to put on weight. He still has the urge to vomit, but because he can’t he is learning to cope and is getting used to it.

He has been busy at school, doing swimming, sports, trampolining etc and cookery. He can now make a cheese sandwich with a little help, which made me so happy I cried a little. Adam got a great first report from school. He is a cheerful, friendly, popular and hard working little lad, apparently!

He completed the Children’s Cancer Run in May with Dad, Hannah, Grandpa and Uncle Richard. The two children raised over £100 for this worthwhile cause. Some of our Post Pals friends were kind enough to sponsor us, so a massive thank you to them!

In September Adam is going to start an after-school Boccia class, which is very exciting, because he really enjoyed watching it during the Paralympics.

He has been having a quite a bit of trouble with seizures, minor and serious, short and prolonged, of all types, and we have had quite a lot of ambulance rides to A&E recently. The seizures have made him very tired and seem to affect his limbs quite badly, making him very stiff. Adam has been having extra physio daily to help with this and as always he is being very brave. His pain seems to be getting worse, so we will need to raise that with his consultant in September.

He has been missing his school activities and friends so we have been trying to stay busy and get out and about over the holidays. We’ve been to the cinema, visited friends, explored the coast and countryside and even met a dinosaur!

Hannah starts school in September and she is very excited. She “graduated” from nursery in July, with a ceremony and a party. She’ll miss her friends at nursery but she is definitely ready for school now and eager to start learning. As usual she has been very loving with Adam, looking after him with gentle affection when he is having a bad day.

Thank you so much to everyone who has sent the little ones post in the last few months, I am pretty rubbish at remembering to post thank you notes, but please be sure your lovely letters and parcels do make a big difference to our two brave children. Adam now has over 100 postcards from Britain and around the world. Adam’s health is very up and down at the moment, with bad days popping up and surprising us, so every envelope holds a treat to make the days a little easier.

Sending lots of love and best wishes to all our Post Pals friends, the Pals and their families.

Update 8th May 2013

Adam had his fundoplication surgery on 18th April and it all seems to have gone well. He was admitted 3 days earlier to be on overnight ventilation, to prepare him for the anaesthetic as his breathing hasn’t been so good recently. We were told to prepare for 2-3 hours in theatre and in all we waited for 5 hours which was a bit nerve wracking. Once he was in theatre, the surgeons noticed that he needed another procedure as well as the fundo, so they decided to do that at the same time. This meant Adam had a lot of sore wounds afterwards (9 keyhole surgery points, two in a VERY delicate place!) and was on a lot of painkillers for a week or so. Adam coped extremely well with the surgery. The doctors had an intensive care bed and a blood transfusion ready for him to recover and were expecting to have him ventilated for a few days, but amazingly he didn’t need any of it. The next day he was sleepy but cheerful, and well enough for visitors and to play with Hannah a little. He was discharged after 5 days (it would have been earlier but he had to have some fasting tests for a couple of days), which was great as we’d been told to expect up to 3 weeks in hospital and we were home in 10 days!

He had a further week off school, went back for one week part time and is now back full time. It’s like he’d never been away! The surgery seems to have worked. Adam is now no longer able to vomit, which means he keeps his milk feeds down and hopefully he will start to put on some weight and gain some strength. It has caused some problems as now he can’t cough hard enough to dislodge anything in his throat, but he is learning to cope with it. He has also been able to come off two of his medicines which is great for him as we always thought they didn’t suit his tummy. So far, we are pleased with the results of his surgery. It wasn’t comfortable for him and we are so very proud of him for being brave and putting up with the pain and worry with a big smile on his face!

Hannah was a very good girl while Adam was in hospital, going to pre-school in the morning and visiting him in the afternoon. She played with him, drew him pictures and told him stories. She is doing really well at school, enjoying her dancing lessons and learning to read. She can read her name, and other key words. We look at her Post Pals post together, which she is finding even more exciting now she can read some of it herself!

Thank you to everyone who has sent post, letters, cards and gifts to Adam and Hannah in the last month. Adam put lots of his post up on the wall of his hospital room, which was admired by the many doctors, nurses and visitors he had.

The four of us send all our love to everyone at Post Pals, volunteers, Pals and their families.

Update 3rd April 2013

We have had a relatively stable last few months, Adam’s health hasn’t been too bad and he has been doing well at school. He has had a couple of nasty chest infections which make him very tired and he has missed some school this term, which he wasn’t happy about. His breathing difficulties seem to be getting worse and we are now having to regularly test for dips in his blood sugar as this might be causing his new seizures.

Adam will be admitted to the RVI Newcastle on Monday 15th April to prepare for his fundoplication surgery. He is going to be put on a ventilator overnight for a few days before to help his poorly lungs cope with the anaesthetic, so the actual op won’t be until Thursday 18th. While he is in the hospital he will also be having some tests to do with his blood sugar. We are hoping he should only be in for about 10 days altogether, but this depends on how well he recovers from the procedure. Whatever happens he is going to miss quite a bit of school. We have told Adam what will be happening and he is being brave but is obviously worried and unhappy about it. We are going to arrange lots of fun activities and visitors for him, and hope we can keep him smiling.

Adam had his 6th birthday on 2nd March and he was well! We had a family party, dressed up as pirates, danced and played games and he was very happy. Hannah is 4 on April 6th and will be having a Teddy Bear’s Picnic to celebrate.

Hannah is doing well and enjoying pre school. She had a nasty accident in March, when she fell and hit her head off a wall, losing a front tooth and splitting her top lip very badly. Hannah had some minor surgery the next day and had a week off school to recover. She was a very good girl about it and now talks about it like it was an adventure.

A very big thank you to everyone who has sent post to Adam and Hannah in the last couple of months, especially for Adam’s birthday and Easter. We can see how much care and effort is put into everything and we are very grateful. We send lots of love to everyone at Post Pals.

Update 4th January 2013

Adam has been mostly well in December and had a very happy Christmas. The rest of the family had a nasty bout of norovirus but Adam seems to have avoided it. He has had quite serious stomach and bowel problems, and seeing him in such severe pain is heartbreaking. Adam tries so hard to keep smiling and has been very brave. Aside from this he has been happy and contented, although we think he’ll be very pleased to go back to his lovely school next week. We were stunned when we realised that Adam had done a whole term without a single sick day, something he has never managed before in his life. Long may this continue!

Adam and Mum, plus Uncle Richard, took part in Adam’s school fundraising Pudding Run on Whitley Bay seafront on Boxing Day morning. It was cold and we only managed about half of the course (his wheelchair is heavy!). Adam enjoyed himself so much and laughed all the way round, getting lots of cheers as we ran.

As we haven’t heard from the hospital, it looks like Adam won’t be having his surgery in January so we’ll have to chase that up, again.

Christmas was lovely. Adam and Hannah were in good spirits, and enjoyed their gifts and being surrounded by loving family and friends. They had lots of time to play with their 4 month-old cousin George who they adore.

The children received so many lovely cards and gifts this Christmas and we are very grateful to you. Their cards covered two doors in our house and Hannah kept asking to look at them and to hear the names of the senders again. Thank you everyone for your kindness.

We don’t know what 2013 has in store for the family, as these days Adam’s condition is very unpredictable. We will carry on giving Adam and Hannah the best possible life and deal with the more difficult days as and when they happen. Post Pals has given our lovely two so many smiles, giggles and surprises, often when they were desperately needed, and we cannot thank you all enough. We wish you all a very happy and healthy 2013!

Update 7th December 2012

Adam has been mostly well and happy recently. He has had some chest and bowel problems but seems to cope a little better than he used to. He’s still in a lot of pain but is slowly learning how to tell us so we can help him.

School is going well. Adam won a prize at Awards Evening for his improvement and hard work. He beamed from ear to ear as he collected his certificate, and loved the applause. Adam is completely settled at school now. He has lots of friends and the staff seem very fond of him. He goes swimming every week, loves using the plasma screens, drawing, making music and playing in the sensory area. He has been busy rehearsing for his Carol Service, including some Makaton signing of some carols.

We are waiting for confirmation that Adam will be in the RVI Newcastle for his fundoplication surgery in January. He’s going to be in for about 2 weeks, which will be difficult for him as he’ll miss a lot of school. It’s possible he’ll have to go into PICU beforehand to ensure that he is stable for the procedure. We’re not looking forward to seeing our little man in so much pain post-op but we hope the results will help him to get on with his life without the constant vomiting.

Hannah is happy at nursery. She was Frosty and a donkey in the Nativity and is very excited for Christmas.

A huge thank you to everyone who sends the children their lovely post. We wish you all a very Merry Christmas and a happy, healthier 2013.

Update 30th September 2012

Adam’s health has been up and down as usual in the last few months. His seizures have been quite frequent and knock him out for days, but he copes well and needs to be admitted to hospital less often than in the past. Adam is still suffering horrible, painful bowel problems and we’ve been unable to help him with the vomiting. We’re still waiting for a date for his fundoplication surgery, after which he’ll need to be in hospital for a week or more. We need a date soon or else it will get dangerously close to Christmas!

A year late, Adam has finally started school! From his first day he loved it and he is well looked after and learning so much. He enjoys assembly and swimming. We have seen such a change in him. He is noisy now! Shouts all the time and trying so hard to form words. His signing is improving, he is more alert and doing really well with the communication technology. School really suits our Adam. He still misses his nursery friends but he has made some lovely new ones too. The school is excellent (which was why we fought so hard to get him in!) and we’re all delighted. Hannah has started pre-school, is settling in quite well although she is a little nervous, and is even doing extra dance and French classes!

Some of our Summer plans didn’t work out because of Adam’s ill health. We couldn’t use our tickets for the Paralympics which was very disappointing for all of us, but Adam just wasn’t up to the travel. We watched LOTS on the tv though. Adam is now a massive fan of David Weir and Johnnie Peacock, and has also decided he wants to learn the javelin and horse riding. Hannah changed her mind every day about her favourite Olympic and Paralympic sports, but definitely wants to be gymnast and a triple jumper. We enjoyed lots of Jubilee events too. We had a party for friends and family, Adam loved the River Pageant on tv and we even got to see the Queen in person (in the wind and rain!) at the opening of Tyne Tunnel 2. The kids both loved all the exciting events of the Summer, and we will have lots of happy memories.

Adam and Hannah love getting all their fantastic post. Massive thank yous to everyone, including Jenny, Jen and Emma who write regularly, everyone who sends Adam postcards from all over the world, and the several Becky’s (Hannah asks if her post is from one of her Beckys). We promise to get better at sending out thank yous!

A couple of final things – a big thank you to Kate D for everything she has done for Adam and Hannah. We hope you get your well deserved rest and relaxation! And congratulations to everyone at Post Pals on the fantastic new website, which we know has taken so much hard work. We love it.

Our love and thoughts are with all the Pals and their families everyday.

Update 1st July 2012

What a busy few months! We moved house in April to be closer to family, and we’re still only half unpacked. Adam now has a large downstairs bedroom which he loves, and we have a sofa in it so there’s a bit of comfort for Mum or Dad when we’re caring for him at night. Hannah’s room has mirrored wardrobe doors, so she’s happy too.

Adam had another week long hospital stay at the end of March, with seizures, pneumonia, bowel issues and chicken pox! Despite our best efforts, Hannah caught it too and was very poorly for a week or so, although she was very brave about it. This coincided with her 3rd birthday, but she managed to have a great time anyway and received some lovely cards and gifts from Post Pals people. Seizures have continued to be a problem, with two ambulance trips to A&E in two days in May. His vomiting has worsened a little, so looks like his fundoplication surgery is unavoidable. We had hoped for this during the summer, but looks like he will have to miss time at school for it.

We have had great difficulty getting Adam into school. He needs a special needs placement and the local authority told us there were “no places” so we  would have to send him to Durham or Northumberland. Two daily hour long trips in a taxi with a stranger would be impossible for a 5 year old boy with serious medical issues so we said no. After a lot of fighting, Adam will now start at a closer school in September, a year after he should have been starting. At the moment they are planning to put him in a year behind his age group, but as we’re not happy about that, watch this space. It seems a shame that the most vulnerable in society have even harder battles to fight to get what they need, just to achieve the same as the “normal” children. We’ll keep fighting though. We hope Hannah will be able to attend the nursery class of the mainstream school which runs along side it.

As Adam has been at home with Mum and Hannah (we have no respite care in place), we’ve been trying to get about as much as possible and see the world. Trips shopping, to the cinema, theatre, parks and castles have excited the kids. Currently, Adam is devoted to all things Tintin (especially Snowy the dog) and Hannah is enjoying baking cakes and then eating them. We will be gong to some Paralympic events in London in August/September which will be great.

Adam and Hannah continue to receive lots of fantastic post, which makes them feel very special. Some parcels are kept for difficult days, and letters are read to them before bed. Photos of scary spiders (scary to Mum, not to the kids) are put back in the envelope very quickly. Adam has had some amazing postcards from all over the world. We mark the countries off on  a map, look at where they are on his globe, and put the cards in a special album.

Paul and I are very grateful to everyone who sends the children post, emails or contacts us on Facebook. I’m making some great new friends via Facebook and Twitter. We’ve been looking at photos from the party and we’re so pleased it went well. We attended via the Facebook Unofficial Virtual Party which was a lovely bit of fun.

We send our love and best wishes to everyone at Post Pals, especially all the Pals and siblings, and we hope the summer is sunny and happy for you all.

Update 13th March 2012

Life has been all ups and downs for the last month. Adam had a communication assessment and did well, impressing everyone with his ability to use touch screen technology and tell us exactly what he wants. We’re hoping to arrange a loan of some communication aids which can be attached to his wheelchair. It’s very exciting for him and us because we’re certain that Adam has a lot to say!

Adam’s health hasn’t been so great.  He has had a couple of seizures, but thankfully minor ones. Unfortunately, he then developed pneumonia and vomiting virus, and this meant that for the second year in a row, Adam had to spend his birthday in hospital. We made the best of it though, with help from our wonderful friends and family. Adam shares his birthday with me (mum) so we had two cakes and roomful of decorations, cards and presents. Adam received dozens of cards and gifts from Post Pals people and we were overwhelmed by your kindness, yet again. Despite being confined to a hospital ward we had a lovely day.

Adam also had a sleep study last month, but he didn’t sleep much. He was quite stressed about the whole thing and he ended up vomiting throughout the night, had a choking episode and a small seizure. Although the study was limited, it does look like Adam has periods in the night when he stops breathing so we’ll be seeing the respiratory team in April.

Hannah will be three soon. She has asked for a little party with Adam and we are happy to oblige. It may turn out to be a very big party!

Thank you for all Adam and Hannah’s post. Any art/craft gifts are being used to make post for other Pals, so after we’ve had fun making, we can pass those smiles on. Adam’s Nursery class have been drawing pictures to send as well.

The four of us send all our love and thanks to you all.

Update 14th February 2012

Adam has had a pretty good month in January. We seem to have managed to control his vomiting and this has improved his health generally. His chest is still troublesome and he is having difficulties with his bowel which is very painful for him. He had his first seizure since May last year, unfortunately quite a serious one, but recovered quickly and didn’t have to stay in hospital overnight.

Adam is making more and more noise, shouting when he’s happy and crying when he is in pain. This might not sound so great but it’s wonderful that he is finally starting to express himself, instead of suffering, literally in silence. He has a sleep study on 16th February which should help us to deal with his breathing and oxygen problems. We should have results by March or April.

Adam is excited for his 5th birthday in a few weeks, and about moving house sometime in March, to be closer to school and family.

Hannah will be starting pre school after Easter. She’s getting to be such a big girl! I would have to say that the family has been happier and healthier recently, and long may it continue!

Thank you to everyone who sends Adam and Hannah post (and Paul and me too!). They opened their Valentines this morning. Adam went all shy and cute, and Hannah declared “Look how many people love me!” Paul and I are so grateful to all of you. Our love and thoughts are with all the Pals, families and volunteers.

Update 20th January 2012

It’s been a while since our last update and so much has been happening. Adam has had his ups and downs, chest infections and now a troublesome bowel. He keeps smiling but seems to be understanding more, and these days we can see the worry every time he goes near a hospital.

During the summer, we were in and out of various hospitals for short stays as Adam was having real problems with his chest and breathing, causing worrying drops in his oxygen levels. Generally Adam tried to stay cheerful.

We had a great family holiday in the Lake District, during which Adam was mostly well, and we got to see lots of boats and steam trains, visited a great zoo and played in a tent in the garden.

Adam had a couple of longer hospital stays in October and December and missed several nursery outings and his starring role as a reindeer in the Christmas play, which was very sad. He also had some surgery to change his gastrostomy tube to a button, plus some investigations of his throat. As a result of this, he has changed to a new milk feed, which has no undigested milk protein. In the month he has been on this, his vomiting has reduced dramatically and we’re very pleased. It makes day to day life for him a little easier and more comfortable. He is trying this milk for another couple of months before we decide if he will need a fundoplication, which we’re hoping to avoid. He remains nil by mouth, but does have flavoured lip balms to give him sweet tastes to enjoy.

Adam now has his new wheelchair, which is much more comfortable and means he’s happier getting out and about. We’re trying to involve Adam and Hannah in as many memorable experiences as possible, so we followed the Rugby World Cup and filled in a wall chart, he’s had several visits to the cinema, and we have got tickets to some events of the Paralympics in August which we hope they will both find fun and inspiring. When in the RVI in December he got to meet several Newcastle United footballers, and even better, a whole squad of the Newcastle Falcons rugby team. This made his year! Christmas was very happy, with Adam well and very, very excited!

So far 2012 has been better, Adam has been stable and happy and we’re making plans for holidays and moving house soon, as well as Adam starting school in April. Adam is our sunshine, and his determination and happiness in adversity is the generator that keeps our family going.

Hannah is doing very well – still a talkative little thing, always asking questions, singing and dancing. She finds it difficult to understand Adam’s condition, but tries her best to look after him and plays nicely with him. They’re putting together quite a cheeky little double act! A few weeks ago, she offered to put on Adam’s shoes and walk for him to help him. Hannah struggles when Adam is poorly, especially during long hospital stays when she has to stay with her grandparents. She keeps going, and is there to cuddle us when we really need it. Hannah is our sweetheart, and makes us smile even at the saddest of times.

We have been keeping up with the updates of other Pals and been pleased to read of some developments and saddened by others. We are always thinking of the Pals and the people who love them. We have some insight into how they might be feeling and they inspire us to try harder and keep going whatever the days bring.

Our thanks to everyone who sends post to our little ones. They enjoy (and keep) every single thing. Quite often, the post they receive can change a difficult day into a happy one.

We send our love to all the Pals, families, friends and volunteers at Post Pals and wish you a happier and healthier 2012.

Update 8th August 2011

July and August (so far) have been better for Adam. He is now fully recovered from his surgery and has been discharged, for now, from the respiratory clinic at the RVI. The vomiting, chest infections and terrible pain in his legs continue, but as he gets older he seems more able to cope. Adam has never been one to cry very much, so when he does we know something is definitely wrong. His seizures have settled down a little too, so his recent change of medication may be working after all. He’s still getting chest infections every fortnight or so, and they tire him out, but he continues to laugh, giggle, smile and try his hardest to have fun, however poorly he’s feeling. As I type, he’s sitting on the sofa wearing splints and gaiters, listening to a story cd and laughing hysterically!

The reintroduction of food and drink had to be delayed, which disappointed us all, but Adam was just too poorly to cope at that time. The first session has been rescheduled for this week, so hopefully it will go well.

Adam can now say three words, with a lot of effort and concentration – car, yes and more. He uses the last one a lot!

Adam is growing up fast and his Dad and I were very proud to attend his pre school “Graduation” on Friday. They did a little play (which Adam slept through sitting in his wheelchair, but then he was playing a tree so it was a very convincing performance!) and then put on gowns and mortar boards and received certificates from their key workers. Adam’s smile just beamed all the way through the ceremony and he was very pleased with himself. Adam is very popular at nursery and got a big round of applause when it was his turn. Adam won’t be moving on to school until summer term next year (as the council “can’t find” him a special needs school place but won’t send him to our choice in a different county), but a lot of his friends are now leaving. He’ll miss them a lot, as he is very happy at nursery and gets lots of love and friendship from the other children.

Hannah continues to do well, talking ten to the dozen all the time and singing to Adam from her bedroom to his.

We’re enjoying the summer and Adam is managing some time outside, either in his little gazebo, or sitting in his special swing, watching the world go by. The whole family (including grandparents and aunts and uncles) are going on holiday to the Lake District at the end of August, which we will all enjoy. Generally, Adam seems happy and contented, and determined, which is all we could ask for.

Thank you, as always, to EVERYONE who so kindly sends Adam and Hannah cards, letters and gifts. They are both constantly delighted by their post, as are Paul and I. Hannah is now asking for letters to be read to her as bedtime stories!

We send love, smiles and best wishes to all Pals and their families, volunteers and everyone at Post Pals. Have a lovely summer!

Update 11th July 2011

Adam had his surgery on 16th May and was very brave. It all seemed to go well as Adam didn’t have any bleeding problems and we were lucky enough to be discharged the next day. It took Adam a few weeks to recover as it was very painful for him. He was a on a lot of painkillers which made him drowsy and uncomfortable. The second week of recovery coincided with a long awaited family holiday to the west coast of Scotland (the week of the gales and torrential rain!), and it was good to get away. Adam and Hannah really enjoyed themselves, especially spending time with their friend Alfie (and Mum & Dad), and Paul and I feel we got a few days to relax for the first time in a long time.

Although the procedure went well, it doesn’t look like it has been as effective as we hoped it might be. Adam’s breathing has improved, but his reflux is still very bad and he continues to be kept awake at night by it. He currently has another nasty chest infection so the doctors are now looking at putting him on a long term course of antibiotics to help him fight infections. The next step is probably going to be further investigations of the walls of his throat and a fundoplication, to help control his constant vomiting.

There is good news too! In preparation for a videofluoroscopy in September, (to see if he is still aspirating into his lungs when he swallows), Adam is going to be weaned back onto food and drink. He has been nil by mouth for a long time now, and we’re quite nervous about this, but it will be amazing to be able to give him the food he loves again. It starts with water and weak juice, but will move onto pureed food and then some solids. As a baby, he loved pureed Brussels sprouts and cheesy mashed potato, so I’m looking forward to getting the food processor out again. It’ll be a slow process, and he will remain reliant on the gastrostomy tube for the majority of his nutrition for quite some time, but it’s a start.

On 4th July, we heard Adam’s first word! It was late at night and he just wouldn’t go to sleep. He’d been babbling away to himself in bed for ages and his Dad went up to check on him. Adam was asked if he was being rambunctious (one of his favourite funny words – Adam LOVES funny words), and out of the blue, he said yes! We are so happy and proud, and he is very pleased with himself. He is attempting other words now, with Hannah helping him.

In the last few months, Adam has mostly preferred to stay indoors at home with his comforts. He loves getting his post, listening to his letters and looking at his gifts and cards. He took part in the Children’s Cancer Run at Gosforth Park Racecourse on 8th May, pushed in his wheelchair round the bumpy course by his beloved Grandpa. He’s doing well at nursery, helped by his brilliant one-to-one support Coral, and growing up so fast we can hardly believe it. We had a Royal Wedding street party too, and Adam loved being King of the street for the day.

Hannah has recently started to do one day each week at the same nursery as Adam, which she loves. They see each other from time to time during the day, without Mummy getting in the way! She is doing really well with her talking, ABC and numbers, and is thriving at the moment. Hannah is totally devoted to her brother (and vice versa) and has told me she is Adam’s special nurse sister. We’re very proud of how loving they are to each other.

Thank you so much to everyone who sends Adam and Hannah letters, cards and gifts. Your kindness continues to make a big difference to our lives, often on very difficult days. Paul and I have booked to attend the Post Pals Charity Ball in October, and hope to meet some of you then.

Our love to all the Pals, siblings and families, and everyone at Post Pals.

Update 16th May 2011

Adam has been very brave but was a little upset this morning before his surgery. He has been recovering from the painful surgery in hospital this afternoon. We’d kept some Post Pals post aside and he opened some and inside was a smiley face balloon. This simple, thoughtful gesture, made a tired and poorly 4 year old giggle. He has fallen asleep tonight holding onto it so tightly. There was no sender, so to whoever sent this little gift, our heartfelt thanks. You really made his day bearable. Post Pals makes these wonderful moments happen.

Update 11th May 2011

Adam has had an up and down couple of months. It was his 4th birthday on March 2nd and he took a cake and balloons into nursery for his friends. Unfortunately, he was taken ill halfway through the morning and had to be rushed to A&E (thankfully just next door). Adam spent the afternoon of his big day in the Children’s Unit at Wansbeck hospital under observation. The opinion is that Adam had a prolonged complex partial seizure, which caused him to lose consciousness for a short time. He was cheered up when his Dad brought a stack of his Post Pals birthday cards and parcels to open in the unit.

Our plans for the day were only postponed until the following Saturday when we went out to the shops to spend his birthday money (Postman Pat toys were chosen) and have some fun at the soft play.

March and April have seen a total of 5 trips to A&E and 3 stays in various North East hospitals. This has mainly been due to seizures, but that tonsil problem has been back and caused him a lot of breathing difficulties. Adam is on some new medication that hopefully will settle down his seizures and let him concentrate on happier things.

We’ve been busy, usually having 3 appointments a week for all sorts of different treatments. He’s being very brave, but as he gets older he understands more and is becoming increasingly unhappy with trips out, as he always seems to think he’s going to hospital. His lovely post is helping though. We save things for days we know he’ll find difficult, to keep that gorgeous smile on his face!

Adam is due to be admitted to the Freeman on 16th May for surgery (he’s having his tonsils and adenoids out) and investigations. Usually this would be relatively straight forward, but because of Adam’s blood abnormalities it’s going to be a tense time. We’re hoping so much that this surgery will help him to overcome his breathing problems, maybe his terrible reflux which makes him sick several times a day, and even allow him to start talking to us. I can’t express how wonderful it would be to hear our little boy say something (anything!) to us in his own voice! Please send positive thoughts his way on 16th May.

Adam’s little sister, Hannah, had her 2nd birthday on 6th April. She’s a cheeky, silly, loving little girl who adores her brother and looks after him all day long. She is having trouble coping with the separation from me and Adam when he is in hospital but tries her best and is always there with a smile, cuddle and a kiss for Mummy and Daddy when we most need it. Hannah received some lovely Post Pals cards for her birthday – she proudly declared to us that she had lots of letters from all the Princes and Princesses!

Thank you to EVERYONE who has sent post to Adam and Hannah in the last couple of months. You really are making a difference to the lives of two brave little ones. Paul and I are so grateful to you all. It’s been a very difficult time recently but your kindness and generosity has helped us through it.

We send our love to all the Pals, siblings, families and everyone at Post Pals.

Update 1st March 2011

It’s been a mixed month for Adam. He has made good progress with his speech and language exercises, using switches and eye pointing more and more, but also attempting a little Makaton to communicate (he knows the sign for chcolate already!). The use of his right hand, which only 6 months ago was virtually zero, has reached a level now where he can grasp things and move them about. We took delivery of his new powered bed this month, which is helping him to sleep more upright and so means less pain and vomiting in the night. He also likes to take little rides on it in the mornings. We’ve put some of his Post Pals pictures and cards on the wall by his bed so he can see and reach for them. Adam doesn’t sleep particularly well, so he is very glad of the distraction.

Adam’s ophthalmologists told us his sight has not deteriorated as they thought it might, so they are going to put off his surgery for at least a year (we were expecting it sometime in 2011), and possibly (fingers crossed) he won’t need it at all as he seems to cope well despite his cataracts.

We’re still waiting for a date from ENT at the Freeman in Newcastle. Adam saw the top surgeon a couple of weeks ago and he seemed to think Adam was haemophiliac, which was the first we’d heard about it! Hopefully, we’ve managed to sort this out and once Adam has the thumbs up from the haematologists about his platelet count, we’ll get a date. The surgery has its risks, as Adam has had clotting problems in the past, but they’re going to be on hand for a transfusion if necessary. We’re just praying for a straight forward procedure and a short stay in the ward afterwards, as Adam is getting more nervous and unhappy in hospitals these days.

Generally, Adam has been his happy, giggly self, but those nasty chest infections (and eye infections, and ear infections) keep on coming and the antibiotics just get stronger and stronger. He didn’t miss any nursery days this month though, for the first month ever.

It’s difficult for us to believe but our lovely little man is going to be 4 this month. He’s packed so much into his short little life, but it still feels like last week that he was born! We’re very proud of our beautiful boy, who perseveres despite all the pain and discomfort, the doctors and physios messing him about and the frustrations of having to rely on us to push his wheelchair when he wants to be running around with his sister and his friends. Adam is very excited about his birthday and we’re going to make it special for him.

Thank you to everyone who has sent Adam and Hannah post in the last month. Adam takes his favourite things into nursery to show his friends and is very pleased with himself. Thanks for the past couple of months to (and this is just some as I’m doing it from memory) – Dominic & Gethin, Sally for the lovely angel, Libby, MJ, Salome, the Hutchinsons, Ann, Ali & Alex, Christine in Australia (Hannah says Kangaroo all day long now, bouncing round the room), Tracy, Elaine & family, Sarah G, Jenny, Emma, and to William for the lovely surprise letter. If I’ve missed you out, my apologies, but be sure your post has made all of us smile. Thanks also to Dottie for the lovely letters. We log into the blog now so Adam can practice his computer skills. Finally, to Adam’s Valentines – you made him all shy and giggly – and we were so happy to see that. Adam and Hannah have enjoyed sending cards and letters to other Pals, and we send all of them and their families our love.

Update 28th January 2011

Adam has had a better few months, with some good news and finally some future plans.

In November he was Page boy at his Auntie and Uncle’s wedding and had a wonderful time, smiling and laughing all day. Since then he had yet another chest infection, and this time he was prescribed some much stronger antibiotics which made him tired and nauseous. They did the trick though and we were very pleased that he was well for Christmas, for the first time in his life.

Adam and Hannah had a great Christmas and New Year, were treated over and over again and met Father Christmas three times! After Christmas the excitement took its toll a little and Adam has been under the weather again, but he has avoided hospital and is on the mend now, but back on those same strong antibiotics. Adam seems to have had quite a growing spree in December too, so he is looking a lot more grown up these days. He continues to progress well with his speech and language therapy, and we feel he is getting closer to saying his first word (probably going to be Pat, as in Postman Pat), which would be just brilliant. The strength in his limbs seems to be improving too, but with that comes more muscle spasms and more painful nights.

One piece of good news is that Adam has been allowed to go back to having small tasters of food a couple of times a day – just fruit purees and tiny morsels of chocolate on his lips but this has made him immensely happy, and us too. We are now waiting for a date for Adam to have surgery to remove his tonsils and adenoids, which the surgeon tells us could significantly improve his breathing and reflux. He will be admitted, all being well, sometime in March (we had a date of Feb 3rd but it was cancelled) and they will investigate his larynx at the same time as it is possible he has an obstruction. If this goes well, we will be able to go ahead with a possible fundoplication, more investigations of his stomach and lungs, and also a new videofloroscopy with a view to reintroducing solid food.

We are extremely grateful to everyone who sent Adam and Hannah post in the last couple of months. Adam kept his Christmas presents until Christmas Eve, and was delighted with every single one. Paul and I continue to be so touched by your kind thoughts and all the love and smiles you send to our little man. The four of us send lots of love and thanks to everyone (and there were a lot of you) who sent something, and we hope to send out thank yous as soon as we can (sorry for the delay!). Adam and Hannah have enjoyed choosing gifts and cards for other Pals and siblings too.

Our thoughts and love are with every one of the Pals and their families, every day.

Update 10th January 2011

Hi everyone I just wanted to wish you all a happy 2011.

Adam and his little sister had a great Christmas, although he has been poorly again since. We are relieved that he has avoided hospital this time.

Thanks to everyone who sent Christmas post, which really cheered us all up.

Our thoughts are with all the Pals and we send our love.

Update 7th November 2010

Throughout October, Adam has continued to recover steadily from his recent illness. He is still very tired and nervous of going out (we have to explain to him very clearly that he is NOT going back to hospital today). He has acquired a nasty and persistent ear infection because he spends so much time lying on one side, so that has been uncomfortable for him, but generally he has been trying hard, happy and contented.

We have been getting increasingly frustrated by cancelled and rearranged appointments, which has meant that the surgery and investigations we were expecting him to have mid-October (giving him lots of recovery time before Christmas) have now been put off indefinitely for no real reason, so it looks like it’s going to be 2011 now. We’re also still waiting for someone to look more closely at his seizures. Our priority right now is to avoid him coming down with anything “minor” like a chest infection so he can be 100% for his duties as Chief Page boy at his Auntie Barbara’s wedding in a couple of weeks.

Thanks to Post Pals as Adam and Hannah have now adopted one of Dottie the Dalmatian’s litter mates, and called him Indiana (Indy for short) as suggested by their Dad. He has been on several family days out already and is a much loved new friend. Adam and Hannah have also enjoyed choosing and sending out post to other Pals.

A big thank you to anyone who has sent Adam and Hannah post this month. He was the centre of attention at the nursery Halloween party thanks to the lovely treats from Carol, Kate D and Post Pals. Hannah enjoyed carrying the pumpkin lantern round the Metrocentre last week and got lots of smiles. We were delighted to receive a lovely postcard from Heidi in Netherlands. Susan very kindly sent Adam some Toy Story things and Hannah a great book, which they loved. Marti sent some lovely books with cds which have been helping Adam to get through the sleepless nights happily (and us to relax!). Sarah G continues to send her wonderful letters which Adam listens to with great interest, and the fabulous pig card from Jazz is also very popular. A huge thank you as well to Donna Bedford who sent a lovely bracelet for Adam, even checking to see what his favourite colour was, and a Hello Kitty keyring for Hannah. Thanks to Jenny for her letter – we would love to reply but you didn’t put an address.

If I’ve missed anyone out I’m really sorry. We are starting to send thank you’s to those who put an address. Paul and I are so grateful to everyone who takes the time and effort to contact Adam. Your generosity is just amazing, and we want you to know that you make such a difference to Adam’s life, giving him so many smiles, and to ours. We send all our love and best wishes to all the Pals, their siblings, Mums and Dads, and to everyone involved in Post Pals in any way.

Update 1st October 2010

Adam spent late August and September in PICU and Ward 1 at the Royal Victoria Infirmary, Newcastle, after being taken suddenly and very seriously ill on 22nd August. His diagnosis was Toxic Shock Syndrome, with pneumonia and tonsillitis to complicate things.

After a few anxious days, we were told he would pull through, and although he was ventilated for a total of 10 days, made a characteristically quick recovery. He is now home, and awaiting appointments for follow ups from ENT and gastro surgeons, who think they can help with his breathing problems (the ENT doctor called his tonsils “too juicy”) and maybe reduce his constant vomiting. Adam’s ulcers have flared up again as well, and are causing him a lot of pain, especially in the night. Whilst in hospital, Adam started having a different type of epileptic seizure, and these have continued since he has been home, so he will be back to the neurology department in the near future too, for an EEG and MRI. He has a few difficult months ahead, but we are hopeful that the doctors are right when they say the new treatments may be life changing.

Adam, despite being extremely tired, has continued to be his lovely, giggly self, and was very pleased to finally be able to go back to nursery. Unfortunately for a little lad who loves biscuits so much, he has had to go nil by mouth for the foreseeable future, as eating and drinking is getting too dangerous to his health. He is working hard on his physio and communication exercises and we even think he may have tried to copy his sister talking the other day. Use of his right hand has improved from helping to open so many envelopes!

Adam has very much enjoyed his first month with Post Pals and now recognises that an envelope or parcel making its way over to him is going to contain something exciting. Thank you to everyone who sent something – if you included your address, we will be in touch soon!

Thanks to Anne for the dinosaur card which made Adam laugh so much; to Sarah G for the teddy card and the lovely story which has been read out about 5 times now; to Becky Fisher for those lovely pictures (especially the fire engine) and her letter; Juno – Adam loves his mobile; Kate W – Adam and Hannah have both enjoyed reading Zigby over and over again; Jane sent a lovely set of pictures of her cat which Hannah in particular was fascinated by; thanks also to Carol who sent the Toy Story sticker book, which we’ve all had fun with (Mum and Dad included), and finally to Percy – Adam thinks you’re the cutest dog in the world. If we have forgotten anyone, our apologies, and thank you for welcoming us so warmly to Post Pals!

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Adam B

17 March 2011

Story written 2010

In July 2009 Adam was diagnosed with High-Risk Neuroblastoma (Stage Four), a rare and aggressive cancer that affects about 100 children in the UK each year. In addition to the primary tumour in his abdomen, the disease had spread to his bone marrow, his lymphatic system, and other distant areas of his body. Like the vast majority of children, Adam had an advanced form of the disease before it was discovered.

Since his diagnosis Adam has been cared for by one of the country’s leading paediatric cancer care units. He has so far had surgery to remove a gland in his neck, had an intravenous line fitted directly into his heart for drug administration, undergone 8 months of intensive chemotherapy, endured dozens of invasive testing procedures and needed numerous blood and platelet transfusions. He also has to take a daily cocktail of other drugs to counter the side-effects of the chemotherapy and to try and keep his body functioning normally.

So far Adam’s cancer has not responded well enough to treatment. His bone marrow remains infected and scans still show disease spread throughout his body. Without being clear of detectable disease Adam cannot move forward to the other stages of treatment – surgery, high-dose chemo, stem-cell transplant, radiotherapy, oral chemotherapy and immunotherapy.

He is to undergo two more 7-day cycles of a harsh chemotherapy regimen called TVD to try and get him to the next stage. Another series of bone marrow tests, CT and mIBG scans will follow at the start of May and his next course of treatment will be determined by the outcome of those scans.

Update 5th November 2013

We are doing well, considering everything. Jessica has started secondary school and has been selected to play netball for her school. She is settling in very, very well. She gets lots of homework but still manages some hobbies – one of which is making pop videos.

Jake has has now started his GCSE years. He’s still playing football, still playing cricket (indoor in the winter) and has started a Saturday job as a football referee.

Adam is missed every day and we have his birthday this Saturday. We’re planning a trip to London to see The Lord Mayors fireworks, followed by a meal at Wagamamas. This was a firm favourite of Adam’s.

Update 11th July 2013

Just after 9 this morning lying in our bed at home as we held his hand, stroked his hair, and told him we loved him, our beautiful son Adam took his last breath and left this world. He will live on forever in our hearts.

Update May 2013

Adam’s parents have updated their blog with an update we have posted below. Please send Adam, Jessica and Jacob some happy post without mentioning Adam’s condition. We have a guide to writing happy post here.

The blog;

After four years, though it seems like longer still, the final stage of our journey has begun. We have left America for the last time, our principle task now to make Adam as comfortable, and free from pain, as possible.

We haven’t told Adam what the future holds, and neither do we intend to; for what purpose would it serve except to add mental stress and anguish on top of the physical pain? Jake and Jessica do know — a conversation like no other I have ever had, or ever want to have again — but it was necessary to be honest with them. For their sakes, please be sensitive with any comments.

Adam remains the same as ever. He reminisces about what he used to do when he wasn’t like he is now. He talks about what he’s going to do when he’s better. He informs me that we can buy some more sticky velcro so his replica WWE championship belts still fit him when he’s bigger. He asks me if he can have a pocket tool with scissors, and bottle opener, and screwdriver, when he’s older? He wonders if the cricket bat we bought him last summer will still be big enough for him this year? Out of the mouth of a child, an embodiment of innocence even now despite everything he’s been forced to endure. And they cut through my heart like a knife.

Just over a fortnight ago, on Tuesday morning, Adam went into theatre just after 9am to have a tube inserted into his chest, and 1.5 litres of fluid removed from his right lung. By 4:30pm he was in the car, connected to a 4ft hose into a chest drain collection kit, and hooked up to a portable oxygen compressor, on his way to Detroit airport for the flight home. Not the standard discharge process after such a procedure, but there was genuine concern that if we didn’t get Adam home as soon as possible, he might not be able to fly. He was retaining large amounts of fluid throughout his body, and in the days prior to our return his output had reduced to practically nothing despite the repeated use of strong diuretics.

A huge thank you is due to everyone at Helen De Vos Children’s Hospital for pulling out all the stops to get Adam home safely. And also to the cabin crew on our Delta flight from Detroit to Heathrow, who were helpful, considerate and patient with us throughout. I’m still not entirely sure how we made it back so (relatively) uneventfully, but we did.

Since returning to Epsom we’ve been to the hospitals we needed to go to, talked to the people we needed to talk to, and set in motion the things we needed to set in motion. We have access to the 24-hour symptom management team at the Royal Marsden, our community team are also able to provide round-the-clock cover when we need it, and we’ve been referred to the Shooting Star CHASE hospice in Guildford. Now we’ll just take life one day at a time.

For the moment Adam is reasonably well in himself; he is comfortable and has even been back playing on the xbox a little — something he’d shown very little interest in for many many weeks. Simply being home has been a huge fillip for him. He has a whole list of things he wants to do, places he wants to go, and things he wants to buy. Whether he’s well enough to do any of them on any given day is another matter though. His fluid retention has resolved — which two weeks ago we had seriously doubted it would, suggesting the immediate cause, at least in part, was a side-effect of the medications he’d been on.

So here we are. And it’s turned out to be of no consequence how long I have known it would come to this. It’s mattered not how long I have spent trying to prepare myself for it. I was not, and am not, prepared. Nothing could have prepared me; for how difficult, and painful, and unfathomable, the reality is.

We are now going to deal with things privately, in our own way. I’m not intending to update regularly, the nor elsewhere, it’s just not me. Instead I will post as and when I feel I have something to say. In the meantime please keep my little boy, and his bigger brother and sister, in your thoughts and in your prayers.

Update 30th March 2013

Since the last update, Adam has flown out to Michigan to begin a new course of treatment here. After a brilliant day flying out here, Adam woke the following morning with probably the highest temperature I’ve known him to have. He was admitted to hospital for antibiotics. The infection proved to be a nasty one but after the first 24 hours gave Adam very little trouble. Because of this, we still managed to have all the investigations done and there were no delays in starting treatment.

Whilst Adam was an in patient, he received the biggest, and loudest, balloon he’s ever had. It was a Superman one and if you tapped it, it played a short, noisy burst of the theme music. He also had, and continues to have, hundreds of emails sent to the 9th floor of the hospital. Even though he is no longer sleeping on the 9th floor, the nurses are forwarding them on to him. There are lots of jokes and messages. A big thank you to everyone who sent them.

Adam is still struggling a bit here as disease and now treatment are causing pain. Hopefully, as the treatment works, this will diminish. We are now looking forward to seeing Jake and Jessica. They have finished school for Easter and are flying out to see us all in a few days.

Update 12th March 2013 from Post Pals team

Adam flew out to America for more tests and to decide on future treatment options, however he has been admitted to hospital with a stubborn infection. The hospital have an E-card system, you just type in a message, they print it out and take it up to the child. We are asking volunteers to flood him with cheerful messages, why not send your favourite joke and a note to say “Hello”? Just click here, enter the name Adam Bird and instead of room number please put ‘9th floor’. Thank you for making Adam smile.

Update 4th March 2013

Firstly, many apologies for the lack of updates on Adam. We’ve had a hard few weeks with him, either here at home or in the US. My last update said that we were due out to America that week. Well we made it.

On arrival, Adam was looking and feeling very well. Unfortunately, that didn’t last long as some of the aches and pains returned. He had a good birthday but his pains got worse in the days that followed. These, and the placement of a new port, meant Adam had an uncomfortable couple of weeks. Our doctor there started Adam on a new treatment plan. We stayed for a month to see how he coped with this and, after scans that showed the disease was stable, we returned home just in time for Christmas.

Adam, however, never takes the easy route. He returned home with an abscess on his bottom which burst on Christmas Day! After a visit to St George’s for surgery to drain the rest of the abscess, Adam then spent the next four weeks with daily visits from our wonderful community nurses to administer some TLC to his bottom.

A month after we came home, we returned to Grand Rapids for scans. The results were mixed – a common occurrence with Adam. So with a little tweaking to his treatment plan we returned home after just a week in the States. This time Adam returned with a urine infection. We managed to avoid hospital in patient stays and yet again we had daily visits from our nurses.

We are due to go back again to the US this week. Adam is due to be rescanned. His aches and pains have become more persistent which is worrying but we will get some answers next week.

Once again, Jake and Jessica are at home with the grandparents who do a wonderful job whilst we are away. The children cope remarkably well. Obviously this is helped by keeping to their daily routines of school and sports and they are remembered by many of Post Pals.

Which leads me to say once again thank you to all who help bring a smile to each of my children’s faces. And thanks to Kevin who also wrote to Nick and myself, as well as to each of the children.

Update 4th November 2012

A big thank you to everyone who has written to Adam over the last few weeks. They have been tough on him and the post has really cheered him up. A special thanks must go to Alice Pyne who highlighted Adam’s current spell in hospital on her Facebook page. Congratulations to Alice too on her Teenager of Courage award – a well deserved honour and recognition for a very special young lady.

So to Adam. Having been in our local hospital and then the Marsden for over 2 weeks, Adam was admitted to have his Port removed as this was quite possibly the source of infection giving Adam temperatures. Since then, he has been home and eating well – and playing well! And more importantly, no temperatures!

He’s had a lovely couple of days at home with Jake and Jessica but tomorrow Adam, Nick and myself, will be flying back to Michigan to review Adam’s treatment – something that a couple of weeks ago I never thought we’d be in a position to do. We’ve packed a few Post Pals cards with us, along with gifts from family and friends as this Friday is Adam’s 9th birthday. He knows we’re going to be away from home but we will make try to make it the best we possibly can.

We are, however, very likely to miss Jessica’s 11th birthday. Good luck to Nanny and Grandad who will be supervising Jessica and her friends for a birthday dinner, followed by a sleepover (yikes). This birthday was organised before I realised that Adam’s quick visit to the States for scans was extended to incorporate the inevitable changes in treatment. For the second year in a row, Nick and I will be missing Jessica’s birthday.

P.S. Thank you Yoda – Luke Skywalker (Adam) has been noisily battling Darth Vader (Jake) on several occasions.

Update 26th October 2012

Adam returned from the US towards the end of September, having completed the first cycle of treatment under the care of the Helen DeVos Children’s Hospital in Grand Rapids, Michigan. He coped pretty well with the treatment but did have to be admitted for high temperatures just as we were due to fly home. Having rearranged our flight, we finally returned home after 7 weeks.

Adam was only home a couple of days before we had to visit our local hospital, once again because of high temperatures. These are probably a side effect of one of the drugs he’s on. After 4 days we were discharged. He has been very tired but was happy to be home. This was unfortunately short lived as once again his temperature started to soar – and at this point he wasn’t on the drugs that could cause it.

So far Adam has been in hospital for 12 days. He’s had the occasional home visit in between but his temperature is still rising at various points in the day. He is currently on a different combination of antibiotics and is getting better in himself. Hopefully, this latest combination will do the trick. He has an infection somewhere but so far neither Epsom Hospital nor the Marsden can find a source. It’s all very frustrating and upsetting when Adam is obviously unwell.

It has been lovely for him to receive his post pals mail. He had a bundle on his return from America and Jessica has bought into hospital the more recent post – she particularly enjoyed bringing in the rather large box containing a Spongebob Squarepants balloon that was almost as big as Adam. Thank you, Post Pals.

Update 10th September 2012

A lot had been going on in Adam’s life recently. He’s back on treatment as his disease has progressed. He initially had treatment at the Marsden. He finished his last course there just in time for the school holidays to start. I went away for a few days with the children. We had a good few days at our caravan, interspersed with a few trips to the local hospital for blood counts! We had a lovely time but on August 6th, I flew to Chicago with Adam so that he could potentially start a new treatment plan at the Helen DeVos Children’s Hospital in Grand Rapids.

After two weeks of tests, Adam was started on 2 chemotherapy drugs. Because these drugs are not usually prescribed together we have had to stay in Grand Rapids for the duration of the first cycle (28 days) under the supervision of the hospital. The intention is to take the drugs back to the UK for future cycles with the help of the Marsden and to fly back for scans/amendments to treatment plans. This has yet to be confirmed! (Not panicking yet as still not finished cycle 1.)

In the meantime, Adam and I are trying our best to enjoy our time here. When we’re not at the hospital, we have been to the zoo and museums, explored the shopping malls, swam, played crazy golf and gone go karting. We have also been to the beach on Lake Michigan. The sand there is lovely and the water has been slightly warmer than the sea off West Sussex where we’d normally go paddling!

As our time here has been extended indefinitely from our original two weeks, we had a visit from Dad, Jake and Jessica. It was lovely to see them and very sad when they flew off home again. I hope it’s not too long before we can see them and to catch up with Post Pals…

Update 19th June 2012

A lot has happened since I last updated in April. Unfortunately, at the end of April, Adam had a MIBG scan which showed that his disease, having been stable for almost 2 years, had progressed. The lymph node that had worried us on his MRI earlier in the year was now definitely neuroblastoma. Obviously, this was all very, very upsetting but we decided we needed a plan of action for treatment.

In early May, Adam and I flew to Hershey in Pennsylvania so that Adam could have blood taken and be assessed for a trial at the Childrens’ Hospital there. The trial consists of forming a vaccine using parts of Adam’s blood and takes a few weeks to make. It was a flying visit. We flew Monday night, spent Tuesday in hospital and flew home Wednesday night. We were made to feel very welcome both at the hospital and at the Ronald McDonald House there. We managed to go to a car museum on Wednesday morning before going to the airport. And because, it was midweek, we had a very own tour guide whilst there. Adam took a photo of just about every car there.

Once home, Adam had a Port fitted (he’d had 2 very happy, carefree months without a central line) and then started a course of chemo here at the Marsden. Whatever our future plans are, we had to start some treatment in the hope of stabilising the disease. Adam had now had 2 courses and we are due for scans next week. Once we have those results, we can plan what treatment we feel is right for Adam. It is almost certainly going to be in the US.

In the meatime, we are going about our daily lives as normally as possible.  Which means Jake playing as much sport as he can (football merges into cricket over the summer) and Jessica participating in lots of school activities. We all went to a family wedding which was lovely. And we have had a few family days out too – on the few rain free days we’ve had.

Update 10th April 2012

Thank you to everyone for the letters, cards and gifts that are sent to Adam, Jake and Jessica – and even me, last month! I had a treat from Post Pals for Mothers Day. Jake offered to make me breakfast in bed but, as Nick was off somewhere doing a 20 mile run, I had to get up and make Adam his porridge.  It was the thought that counted!

The following weekend, we went to Center Parcs to celebrate Adam’s grandad’s 70th birthday. We have been several times over the years but this is the first time since we’d been since Adam became ill. The weather was lovely so we cycled everywhere and the timing couldn’t have been better. Adam had his Hickman Line removed 2 weeks before due to it being infected. At some point, he will have a replacement but for now he is wiggly-free, and boy, did he make the most of it that weekend. We spent hours in the pool. It was great for us all but especially for my Dad who fully appreciated having all of his grandchildren with him for the weekend to celebrate his birthday.

Since then, Adam has had a few more days off school before the Easter holidays started. We’ve pottered around at home on the whole although we did have one trip up into London to visit Madame Tussauds. It was very busy and I thought it wasn’t the best idea I’d ever had until we go got to the last exhibition. It was all about superheroes! Adam had a great time and loved the 4D film that finished it all off.

Update 13th March 2012

It’s been a very busy few months for Adam. He completed his treatment in Germany at the beginning of January. The whole family travelled out in mid-December for the final cycle of immunotherapy. Adam had a week as an outpatient, a weekend off, and then went into the hospital as an inpatient for a couple of nights before being treated as an outpatient again. And during the weekend off? Well, that just happened to be December 24th and 25th! So the five of us celebrated Christmas in a rented house in Germany and it was lovely. I cooked a chicken and we had Christmas pudding and crackers. Our landlords had put a few decorations up before we arrived and we took the children shopping to choose a few more. Santa was very clever at finding the house to deliver the presents. I think Adam was a little concerned that he’d deliver them to home, but he needn’t have worried. Our campervan was rather full on the journey home.

We all came home for a couple of weeks, before Adam, myself and his dad took our last trip to Germany for final scans. Although his mibg once back home at the Marsden showed that his disease was as stable as ever, the German MRI indicated a new tumour. We had a very worrying 10 days before the mibg and results from our consultant here. A follow up MRI at the Marsden shows that there is no change to the ‘mass’ from the first MRI. What it is, we still don’t know and it will be monitored. What we do know is that its not fast growing, aggressive, mibg-avid neuroblastoma.

So back home, Adam had attempted to have a routine that includes going to school. It’ll be a while before he’s full time but we had got his hours to 10.30 to 3.30 and he was thoroughly enjoying being with his classmates. At some point, we will have to address his lack of education for the last 2 and half years but for now the idea is to concentrate in integrating back into school life.

He’s had a bit a hiccup in the last couple of weeks. He got an infection in his Hickman line. In fact, he had about 5 infections! So off to the local hospital he went for IV antibiotics. And as the only thing planned to be going into his infected line for the next couple of months is antibiotics, the decision was made to remove the line. Adam now has no Hickman line. He is thrilled. At some point we may have to consider having something else placed but for now, he is wiggly-free! He plans to go swimming in the very near future. And to get back to school…

Thank you to everyone for our post and Valentines cards.

Update 30th November 2011

It’s been a while since I’ve updated – we’ve been doing lots of travelling to Germany and back and we don’t always have easy Internet access.

After an awful time with cycle one of immunotherapy in Germany (Adam was knocked out by the morphine and ended up in our local with pneumonia), he has positively sailed through the last 2, mainly due to switching from morphine to a different drug with few of the side affects. We spend 2 and a half weeks in Germany and then 2 and a half at home – and whilst at home, Adam has managed to go to school for a few hours each day.

Adam is now at junior school and when there he thoroughly enjoys himself. He sees old friends and has generally settled into the class and school with new teachers. He is now “a proper schoolboy” and came home sporting a black eye – a result of clashing heads whilst playing cops and robbers on the playground. How normal is that?

However, “normal” grinds to a halt every fifth Saturday, when we wave goodbye to our other 2 children and drive across Europe to hospital. Adam is taking it all in his stride. He has the occasional wobble as we leave but we’ve made the whole time as comfortable as possible. Because we drive, we take a fair few home comforts, and when we arrive, Adam’s new friend Ryan – another English boy being forced to make the journey to Germany – is there waiting for him. We spend far longer at the hospital each day than we need to because the boys are having such a good time together.

When we get home there is always a bag of Post Pals post waiting for us. Adam and Jessica love diving through the post. A big thank you to everyone who sends things to the children. Also, a big thank you to Dominic as he writes almost every week – and even sent Adam a postcard from his holiday this month. He was at Disney and I would have thought he’d have too many exciting things to do.

Today (Sunday 6th November) Adam had a birthday party – he will be 8 on Wednesday. He had a handful of friends to play football in the garden and I don’t think we could have planned anything better for him. His Dad and big brother did a spot of training with the boys and then they had a short match. Once again, it was all so normal.

We will miss Jessica’s birthday though. She is 10 one week after Adam is 8 and we will be in Germany by then. Her grandparents are going to be looking after her and she is already planning what treats they are going to do for her.

Adam recently had a MIBG scan to see how his disease is going. The result is that everything looks to be stable which is good news. He has another couple of scans during the next cycle in Germany and its fingers crossed that the results will back up the MIBG.

Update 5th July 2011

Thank you to everyone who sends mail to Adam, Jess and Jake. The arrival of the post continues to bring smiles to all. Adam is doing very well at the moment. Apart from very dry skin and having to avoid the sun (and yes we have had lots of sunny days this summer!) because of his current oral chemo, he’s enjoying life.

Adam, Jess and dad Nick had a great time at the Post Pals party a couple of weeks ago. The bouncy castle and slide was a huge hit as far as they were concerned. A big thanks to all the people involved in organising such a lovely day.

Since May half term, he has been going to school almost every day – although not for the whole day. He very quickly settled into a routine with his old friends. He even has his old reception teacher as his current teacher. He’s been on school trips including an entire day at Chessington. He’s practising for his year 2 leavers’ assembly and as I type this, is attending his induction day at his new junior school. It’s about as ‘normal’ a life as we can make it at the moment.

However, we are now waiting to be given dates for Adam to start immunotherapy in Germany. He has been accepted on the trial there but, as yet, we don’t know when we are going. When we do go, we’re expecting to spend 2 weeks at the hospital there out of every 5. So we will be home in between. For now though, we’re enjoying our home life as much as we can.

Update 11th May 2011

Adam is doing very well at the moment. It’s been 3 months since high dose chemo and stem cell transplant. He has recovered all the weight that he lost and seems to be recovering some of his energy levels too. His blood counts are still on the low side but are stable. Easter holidays were quite a turning point. I’m not quite sure if it was the sun coming out or having Jake and Jess off school to play with, but he was full of energy. He did lots of cycling and walking, playing in the garden and we had a few trips to the beach. We even spent an afternoon at West Wittering with Adam wrapped in cling film to protect his Hickman line whilst he paddled. He got a little wet when a wave came over the side of the dingy he was in, but he was a very happy little boy.

Scans show that the high dose chemo has had no effect on the visible disease in Adam. As this is chemo designed to rid the body of any hidden cancer cells to prevent relapse, the fact that Adam’s disease burden was stable came as no surprise. We are now in the process of deciding what future treatment Adam is to have. He will have scans next week to see if the disease that’s left is still active. The outcome of this will determine which course of action we take. What we do know is that any further treatment is going to be abroad. There are no options here. It’s a scary thought and we are trying to get as much family time as we can.

Update 1st March 2011

Adam is home again following his stem cell transplant. I don’t think he broke the record for starting pre-transplant conditioning and coming home but he would have been close. Three weeks and 4 days!

As with everything that gets thrown at him, Adam coped with it all with very little complaint. He had 2 weeks where he was unwell but once his blood counts (well, the “white” ones) started to recover, so did he. His red blood cells are going to take longer because of this chemo and the MIBG therapy he had at the start of January – visits to Epsom General for blood and platelet transfusions will be frequent.

He is tired and feels the cold more than he did before but he still has a smile on his face most of the time. His first task on coming home from the Marsden was to play the Xbox with Jake. I think they both missed their play sessions. There will be scans and lots of discussions about what the next course of action is for Adam but for now he’s home!

Thank you to everyone who sent post to The Royal Marsden. Adam thought it was great when a letter or two (or three…) arrived at his bed.

Update 31st January 2011

As of yesterday, Adam is at the Royal Marsden in Sutton for high dose chemotherapy and stem cell transplant. It’s going to be scary time for all of us but particularly Adam. He’s had a lovely couple of weeks at home – he was pronounced no longer radioactive just a week after leaving UCH having had MIBG therapy. So all three children got to run around home – laughing and arguing – as normal. Adam is about as healthy as he’ll ever be undertaking this next stage of his treatment. All we can do now is cross our fingers that he’s strong enough to cope with whatever it throws at him.

Update 3rd January 2011

We all spent Christmas at home! We were never really sure what the plan for Adam was going to be and at one point he was due to have his next dose of mibg therapy on 15th December which would have made him radioactive over Christmas. As a family, I think we would have had to have had a late Christmas Day if that had happened. However, the doctors had a rethink and he is now due at UCLH on January 5th. So we’ve had a medical free festive season.

Christmas at home was lovely – grandparents and other relatives came to visit and all the children had a great time. We even managed to go away to the other grandparents at New Year – the first time we’ve been visiting anyone since Adam was diagnosed in July 2009. Adam was over the moon to be going somewhere different, “where can we go next?” he said. I think he just appreciated the normality of it.

Once again Post Pals have been very generous – to all of us and not just Adam. I even had a box of chocolates or two. A big thank you. It’s been a very long year and it has been brightened by the kind people who are Adam’s post pals.

Update 26th November 2010

It’s been a busy month for us – November usually is – as both Adam and Jessica have their birthday. Adam started off the birthday season a few days before his birthday with a Spiderman party held in his school hall. It was great for him to see his friends as he still isn’t able to go to school very often. His actual birthday was a very special day for us all. This was thanks to a wonderful charity called Dreams Come True. Adam got to meet his hero, American wrestler John Cena and to watch the WWE Raw event at the O2. Adam had no idea what was going that evening and it was great to watch his face when John Cena walked into the room. The man himself was very accommodating and had his picture taken with Adam, then with Adam, Jake and Jessica, and then with Adam, Jake, Jess, Nick and myself. We then went to watch the show. I don’t think we could have asked for better seats as Adam shouted himself hoarse over the next couple of hours. We all had a great time. His birthday couldn’t have been any better. Jessica had a lovely birthday too albeit slightly less exciting! I took her and several friends to the cinema and for a meal. I guess we can’t meet wrestling stars every time there’s a birthday…

Adam is about to have a short course of chemo in readiness for a third stem cell harvest. Once the harvest is done – cross fingers please that it is more successful than previous attempts – he will go for another course of internal mibg radiotherapy. We have yet to find out how this will affect Christmas but we will make the most of it wherever we are.

A big thank you to everyone who sent birthday greetings and gifts to both Adam and Jessica.

Update 2nd November 2010

Adam is again feeling quite well. He spent the earlier part of October radioactive due to internal radiotherapy. He was isolated in a room for 6 days with only a little contact with his mom and dad and then once he could leave the hospital, wasn’t allowed to go home as he couldn’t have close contact with other children. So I (mom) took him to our caravan near Bognor Regis. It turned out to be a lovely week. The sun shone every day. We cycled, fed the ducks and did a little bit of tennis and golf! Once Adam was tested and his radioactivity levels had dropped, we came home. Only to go back to the caravan but this time with all five of us.

Since then, he’s had a couple of visits to school and enjoyed half term with Jake and Jessica. Now we’re waiting for blood counts to go up and we’ll be back for hospital visits. Another stem cell harvest is planned, followed by another dose of internal radiotherapy. But for now, we’re all home together.

Update 31st August 2010

Adam has had a lovely few weeks – we’ve spent every weekend of the school holidays at our caravan as a family. Jake’s broken arm has meant that we’ve not been tied down to his sporting activities as we normally would. Every cloud…!! Jake’s cast came off today and he’ll be off sports for another 6-8 weeks.

There have been a few hospital visits for Adam, but generally he has been well. We’ve had walks to the beach, played golf and played lots and lots and lots of card games.

Summer is now over for us though. Adam is now at St Georges, Tooting, ready for surgery to remove the tumour in his abdomen. It is a daunting experience for us all but it also a milestone in Adam’s treatment.

Update 9th August 2010

Adam is currently in the Royal Marsden for a second stem cell harvest – the first failed to get sufficient cells for future treatment. Adam finally achieved a clear bone marrow result so he can now finally move forward with treatment. He has remained well for the last few weeks and has even managed a short holiday with the family on the south coast. It was lovely to just be away from hospitals and treatment – although he didn’t entirely escape. As we were packing the car to go home, Adam got stung by a wasp. He did have a slight reaction to it so we checked him out at a local hospital. Luckily the reaction didn’t spread any further than the hand stung, so we continued our journey home a couple of hours later than planned.

Adam’s older brother, Jake, broke his arm a few weeks ago whilst re-enacting the TV show Gladiators. He was on a podium above an inflatable with a pugil stick. His opponent knocked him off – as he was supposed to – but Jake managed to fall off the inflatable too. So he’s had his fair share of hospital visits.

Once again, Dominic and his mum have made Adam and his parents smile. Adam regularly gets letters – and gifts – from Dominic which are full of tales of life in their household. A big thank you for the letters – one day they should be put together to make a wonderful book!

Big brother Jake has received a few more cards than normal due to the news that he broke his arm just before school ended. He would like to say thank you for the cards and especially for the very kind lady who sent him a skull and crossbones sling!

Update 12th July 2010

This afternoon Adam’s brother Jake broke his arm (quite badly) in an accident and he is in surgery having it fixed up. Obviously the family have got a lot to deal with already with Adam’s Cancer and this must have quite an effect on the other children in itself. Given Jake’s own predicament I think it would cheer him up to receive some mail himself. Thanks very much.

Update 29th June 2010

Adam and Jessica had a lovely time at the Post Pals party. It was great to meet those responsible for helping to put a smile on their faces.

We’d like to say a big “Thank you” to Dominic. He is a fellow 6 year old and his letters are very, very funny. Adam and his mum look forward to them. Adam even got an invite to Dominic’s birthday party but it was a little too far to travel. Also, thank you to Jasper and his parents, Matt and Lucy, for sending Adam a lovely collection of foreign coins. We had lots of fun figuring out which country they came from.

Update 10th May 2010

After undergoing the last two rounds of TVD chemotherapy, Adam’s latest set of examinations showed that the cancer remains active in both his bone marrow and throughout his body. He had no response to the previous two months of treatment and so his condition has been re-classified as ‘stable’ rather than ‘responding’. Adam has just begun a new course of chemotherapy and will be retested again in July following two cycles of this new drug combination.

We have been amazed at the kindness of people sending messages, cards, letters, and gifts to Adam. We feel guilty that we are unable to respond to all the wonderful people who have taken the time to brighten Adam’s day, however, it’s simply not possible to do so, and we hope people understand and don’t mistake this for lack of gratitude. It is now a definite highlight of Adam’s day to receive Post Pals mail. He has started asking what time the postman comes and today as we were driving back from hospital he said he was excited to be going home because he wanted to see if there was anything from Post Pals for him to open when he got home.

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17 March 2011

Story written 2010

Adam was born at 31 weeks, 9 weeks premature. His bowel was gangrenous and volvus and he lost a third of it.

Adam has had 52 operations and procedures to date. Adam is TPN dependant and now is on the transplant waiting list at Kings College Hospital London.

In 2008, Adam was also diagnosed with Bilateral Cystic Kidney Disease.

Adam’s mum, Lesley, has written below how 2010 has been for Adam so far, in order to help everyone understand a little more about what life is like for him.

At the start of 2010 Adam was in hospital. He had a line infection that started at the end of November and had been on IV antibiotics since. He ended up staying until the middle of the month and he got very down this time as the infection took a lot out of him.

By February the line infection had finally gone. He had a kidney function test before going into GOSH for some of the other transplant assessment test. GOSH confirmed Adam does have polycystic kidneys disease. Then Adam went to Kings for the rest of the transplant assessment test and to meet the team. This was not easy for Adam as he was told he would lose colon and most of his stomach or it may also need transplanting.

In March, Adam started the vaccination course that Kings wanted, which was 2 x HEP A, 3 x HEP B, 1 X MENINGITIS, 1x BCG, 2 x ROTAVIRUS, 2 x SWINE FLU. Adam also had a heart function test and heart scan.

In April Adam had to have his wisdom teeth out and they were still under his gums. This was just in case they cause problems after transplant, so they had to cut his gums to get them out. Bless him, he was bruised, swollen and had stitches. He also had a course of urokinase and an ethanol lock for his central line problems that month.

By May, Adam’s central line was still causing problems, so another ethanol lock was needed. At a meeting between KINGS AND GOSH they decided Adam does needs a transplant and they can offer no other treatment. The surgeons all say it is to dangerous to go into Adam’s gut and have a look before transplant. Last time the surgeon had to call 2 other surgeons to help and to do his stoma it took 3 of them 9 hours. This has been really hard for Adam and he is now suffering from depression and anxiety so they started him on fluoxetine to help.

By June, Adam’s dehydration was becoming more of a problem in the hot weather so he is now 24/7 on his drip. He also sat his GCSEs at home at he hasn’t been to school for 3 years and he has home medical schooling.

In July Adam was put on the transplant waiting list – it has taken such a long time to get to this. Then Adam got a line infection that spread to his blood and then on top of that he got tonsillitis. We had another stay in hospital and lots of IV’s antibiotics but this time his gut stopped tolerating all other meds as well. All meds now have to be done IV.

Adam has been a little more stable in August, but his gut still won’t tolerate oral meds. Adam also started treatment for his colon which is short chain fatty acid enemas and are very unpleasant for Adam, he hates it but he has ulcerative colitis and diverticulitis as well. Adam’s nurse comes round every week to do this at home which helps as he really doesn’t like it. Adam’s platelets and neutrophils have also been low so they are keep a close check on him, lots of blood tests and they can’t use the central line. His dehydration is still a big problem but this won’t get better until he has the transplant.

Update 15th May 2011

Adam’s j-peg operation went well and we are now on top of the line infection which is good news. Adam has been transferred to Poole hospital and we are hoping he will be home this week, yippee!

Update 5th May 2011

Adam’s j-peg operation went well and we are now on top of the line infection which is good news. Adam has been transferred to Poole hospital and we are hoping he will be home this week, yippee!

Update 21st April 2011

Adam is home for Easter on tpn and peg feeds. Adam has to go back next Tuesday to start other treatment. Thank you all for your support.

Update 10th April 2011

Adam has lost a lot of weight from 54kg and is now 47kg. TPN stopped but he has had a bowel blockage already. He went back to saline for 24 hours and now we are starting pegs feeds up to 10mls per hour with saline. The problem is he is getting more and more tired and is in pain. Adam is getting very upset with the doctors as he feels they don’t listen to him. He has asked to speak to the surgeons about the pain he is in as he never had pain when he had a stoma.

Thank you for the box of wonderful goodies and for all the support you are giving Adam and our family. Also thank you for all the cards and well wishes as it really makes Adam smile. Adam will be in Kings for a while yet.

Update 25th March 2011

Adam’s bowel is still not working, he has lost half his colon and his small bowel is now made up from many bowel resections. The doctors are still hoping his bowel will start to work soon. He has lost about 5kg in weight so far. He is going to try peg feeds later today, starting at 5 mls per hour. The doctors want to put a j peg in but Adam has refused and said try his peg first. It looks like he will be here for a good few weeks more.

Thank you for all the post everyone has sent.

Update by the Post Pals team, March 2011

Adam received his call and went to theatre. He didn’t receive his transplant though and spent many days in ICU. He is now back on his normal ward and is in need of some smiles in the post.

Update 2nd February 2011

Adam has been on the transplant list now for 7 months and is finding it stressful. We had a false call – the ambulance came and off we set but when we got half way the transplant team called and said the surgeon had just refused the organ. We were told to turn round and go home and wait again. Adam was very grateful to the other family that wanted to help and was very sad for them as they have just lost their child. That evening we lit a candle for them and said a little prayer.

Adam has also sat some GCSE exams at home as he isn’t well enough to attend school. He thinks he did ok, so cross fingers for him.

Adam had all the pre transplant tests done a year ago now and has to have most of them done again now. One of Adam’s doctors decided he wanted Adam to transition to adult care and refused to do it properly, he just transferred him. Adam hadn’t even met his new doctor and this caused a lot of stress and we had some problems with his tpn. Adam is getting low in iron and the doctors think he will need to start infusions soon and he is low in vitamin D so he may have to have that infused as well.

We are looking forward to his birthday this month and thank you for all your support.

It has been lovely getting cards and well wishes from all over the world. Thank so much everyone for caring, it bring lots of smiles. Thank you for your kind and thoughtful gifts too. They really do make Adam smile when he is having a tough time. It’s really amazing that so many people are so caring and thoughtful. Thank you from all of us for supporting Adam.

Update 8th January 2011

December was a good month and the only problem Adam had was his central line keeps blocking so he has to have urokinase infusions to unblock and a couple of ethanol locks. The doctors have increased his calories again in his tpn to 3000 per day as weight gain is very slow. Tiredness is still a problem and Adam doesn’t like going out, but overall a good month.

Thank you to everyone who sent Adam Christmas cards and postcards, we were amazed at how many Adam received. Adam had cards and well wishes come from Japan, USA, Australia, New Zealand, Finland, China and many more. Thank you! He also had a lot of cards from home as well. Some of the cards were made by children and others were personalised. Thank you for all your kindness and support.

Thank you also for the gifts Adam received, they were amazing and lovely. Adam loved all the smellies, Stig and Top Gear presents. The orange t shirt he wore on Christmas day, the 007 cars he has on his window in his bedroom, the calendar on his door, and the dvds he is saving for when he goes into hospital. Also, the rotating picture cube and the maze ball, the picture which was hand painted and the magazines and car information were all great, thank all so much for caring.

Update 2nd December 2010

It’s been a very stressful month emotionally as we have met again with the transplant team. They are doing everything they can to get a transplant as soon as possible, but they have increased the size of the donor organ now twice, as they think the transplant needs to be done sooner. The problem with this is Adam will have an open graft and a lot of operations to close his tummy after and Adam is very upset by this. The risk of infection is higher so it’s understandable that Adam is feeling anxious.

Adam said thank you for all your support and sorry he is feeling down and he hasn’t replied yet to letters or emails. Adam doesn’t get out much (only twice this month) so your letters and cards are most welcome. Thank you to you all for supporting Adam.

Update 5th November 2010

Adam has spent some time this month back in hospital and had a worrying few days when we lost tpn feeding. Adam had an allergic reaction to a batch of his feed. Adam has no other means of feeding so it was very stressful but we had a new batch made up which took a few days and so far all is good. We also lost access to his central line as that blocked but with urokinase put in the line for 24 hours it cleared the line. However he had to have a canular in and with damaged veins it’s not nice and as he had no feed for a couple of days he lost 3kg in weight.

We met with the transplant team and had words of caution from the surgeons because he is not putting on weight with the tpn and it is not doing its job anymore – it is keeping him stable but nothing else. Adam was first listed for transplant as lifestyle, but that has changed and he is now listed for survival. They think the tpn will stop working in the future and Adam needs his transplant now for the best chance of survival. I’m so proud of Adam as he asked all the right questions and listened to the doctors. The surgeons have also said they think Adam is at greater risk of an open graft as he has a very small abdomen. This will mean more operations and a higher risk of infections after.

Thank you for all your cards and letters this month, Adam will try and reply. It was very kind of Kate and Post Pals to send Adam a gift package of Halloween goodies – thank you. Thank you also to Debbie for sending Halloween goodies – Adam made a Halloween pumpkin face with your wonderful gift. Thank you to everyone who has sent letters, cards and gifts, it is very kind of you.

Update 17th October 2010

Just a quick update on Adam. He is in hospital and is unable to have tpn which is a worry as he has no other means of feeding. Every time he is put on tpn he comes up in a painful rash and he is showing signs of being allergic to his feed. I will keep you informed.

Update 1st October 2010

Adam has had all the routine hospital appointments and blood tests etc. Adam’s biggest problem still remains the amount of time he spends each day on his drips. It means he doesn’t see his friends much (only twice this month). He is very isolated most of the time so your letters, cards and well wishes, are good for him.

Adam has a very good community nurse who comes out at least once or twice a week to do treatment at home and to keeps an eye on how dehydrated he is getting. We do all iv’s at home now which really helps, as Adam doesn’t like going to the hospital.

Thank you Post Pals for all you support. Thank you to everyone who is wishing Adam well. It’s a very stressful time with Adam being on the transplant list so thank you for thinking of him and caring. Thanks for the lovely cards and letters and to Hannah for the chuckling monkey, it’s very kind of you. Adam also received a lovely balloon with a happy smiley face and a lovely pillow case which he keeps on his bed.

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17 March 2011

Story written 2011

Aaron was born at 39 weeks on the 27th March 2000. He weighed in at 5lb 12oz and he was so little he could fit into his Daddy’s hand. He struggled at first and the doctors had to give him oxygen to help bring him round a little, as he was very drowsy.

When he was born the doctors noticed that Aaron had undescended testes, which can be quite common in boys, but they could not be felt higher up at all. They decided that a hormone test and a chromosome test should be done to see what was causing the problem. After an agonising 2 week wait for the result, the hormone test came back normal but the chromosome one came back abnormal. It was explained to us that Aaron had a re-arrangement of his chromosomes, he had too much of number 14 chromosome and not enough 18 chromosome, but as it was such a small amount they didn’t know how it would affect Aaron. The Doctors had not seen this before so did not know what the future held.

Aaron didn’t like being fed and because of a very high palette he had trouble eating and swallowing. After battling for 7 years Aaron had a gastrostomy fitted. This was the best thing we’ve ever done as before he was so fragile but after the gastrostomy he put on weight and got heavier and stronger.

Aaron suffers badly during the winter months and often ends up in hospital where he is well known. At one point he was going into hospital every six months but now it is just once a year. Aaron will start off with a slight cold but this will get worse and turn into pneumonia requiring IV antibiotics, IV fluids, oxygen and nebulisers and a week in hospital. He does suffer with asthma but this is controlled with inhalers.

Aaron also has cerebral palsy. He is unable to sit unaided and is wheelchair bound. He does love to lie on the floor though. Aaron is a very happy boy and loves to interact with other children. Even though Aaron can’t speak he can make sounds. He can wrap anyone around his little finger and always gets his own way. He is such a loveable young man and loves his little brother jumping all over him.

In March 2010 Aaron underwent a fundoplication operation. He was not his happy self after and in July had to undergo another operation to loosen the tie off. He is now getting back to his happy self. He has been extremely brave and always comes out at the other end with a massive smile on his face – that’s why we all love him so much!

Update 25th February 2018

We have had a long hard think and have decided we are now ready for Aaron to move on from Postpals, he is coming up to 18 anyway and we’ve had many happy years with Postpals and now want another child to experience the smiles that you have given our family. We can’t thank you all enough for the wonderful happy post & definitely lots of smiles also the support when things have got tough with Aaron’s health. We cannot thank you all enough for everything you have done for us, you are an amazing team of people, from the bottom of our hearts THANK YOU

Update 15th October 2017

Aaron is doing ok, he’s had his usual chest problems, but luckily with the help of his nebulisers we have kept him stable and out of hospital. He’s recently had a check up with his hips and this is still ongoing and we’ve got to closely watch him and then go back to see the surgeon.This is to see if they will just wait and see if they’re dislocated or if they will operate to put it back into place. He had his eyes tested yesterday and been told he now has cataracts, but no one will do anything about it due to his health conditions. Your post always cheers the boys up and makes them smile. Thank you to all the people behind the scenes who make Post Pals what it is today.

Update 26th June 2017

Aaron is doing okay at the moment, we are waiting to undergo heart tests as he keeps going into SVT (high heart rate) for no apparent reason, so he has been referred for 72 hour ECG to see if this is heart related or if it’s brain related. We think it may be related to the heat with it being so warm. So looks like it might be body temperature related, like overheating. Fingers crossed tests will confirm this and it’s nothing heart related. We are still monitoring his hip as may need an operation on that in the coming months, but the surgeon asked to monitor him to see if in pain and if we think he is then they will look at operating.

Update 4th May 2017

Aaron’s had an up & down month, had few appointments regarding different things, one being his hips. We have discovered he had a partial dislocating left hip, he had an operation on his right hip when that was dislocating, so we are expecting it to happen again. We saw the consultant last week and have to closely monitor him for the next couple of months, to see if we think he experiences pain when changing, bathing, moving & handling etc. Then we will go back to the consultant and see if he needs another hip operation to correct the left one.

We’ve had respiratory appointments as he has now contracted Pseudomonus again, which he keeps getting over and over again. This is a bacterial infection that causes lots of coughing up some very nasty stuff and a dry mouth. Also in the last few months we have noticed that Aaron keeps having SVT (where his heart rate shoots up) we are now hoping to get in to see a heart specialist to see what could be causing this, as it can last from a few minutes to hours, resulting in 999 call to hospital and then medication to bring it down and back to normal. We thought that maybe it  was infection related, but it just seems to be happening more and more. Maybe it’s the Pseudomonus that’s causing it, and he is having treatment for this, antibiotics and nebulisers twice a day.

But he always comes out the other end with a smile, and it’s thanks to all your post that keeps us and him going through all these hard times. Thank you from the bottom of our hearts.

Update 2nd March 2017

Aaron is poorly at the moment, just waiting on results to see if it’s just the nasty cold virus that’s been going around or if his lung infection has returned. If the lung infection has returned then it will be a case of returning to the nebuliser with antibiotics for at least 3 months, twice a day! Which Aaron is not a fan of!

Also not had great news the last few weeks, went to see the hip specialist and it turns out he now has a left dislocating hip, just like he had with the right one a few years ago, so now the specialist is consulting with the specialist at Sheffield children’s hospital to decide a plan of action. If they leave it and watch it, or go ahead and operate, as it requires an 8-9 hour operation, pin & plates in the hip bone, spica pots on from his waist all the way down to his feet and then the big bar across, for at least 3 months. So we’ve got to return in 3 months to discuss what they have decided to do.

So all the post the boys have been receiving has come at the right time to cheer us all up, you don’t know how much it means to us all thank you!

Update 9th January 2017

Aaron is doing ok, we’ve had appointments with the consultant, been re referred about legs as he’s not happy when sat for long times in a wheelchair so there maybe a hip problem, we’ve also been measured for a new wheelchair. Hopefully he will find that more comfortable.
Aaron also had been quite well over Christmas, we had to re start the nebulisers due to the Pseudomonus lung infection coming back, but up to now looks like the treatment is working and no hospital admission is needed.
Thank you for all the amazing gifts the boys have received over the Christmas period and the whole year, you guys are amazing.

Update 15th November 2016

Aaron has been ok. He’s had various tests as we thought the Pseudomonus has come back, but as yet they are all clear, but now the winter has started this is where Aaron does get poorly so we’re trying to keep him wrapped up and warm, hopefully the winter won’t be too bad and we have no admissions to hospital. Aaron has received some amazing post this month and it certainly does make him happy & smiley, really does cheer him up after a bad day or when he’s in pain with his hips/legs. Thank you to everyone who has thought of the boys and sent them letters, cards & gifts, it means the world to us all.

Update 6th September 2016

Aaron has been ok. He got blue-lighted into hospital a few weeks ago, just before we went on holiday as his heart rate hit 220 BPM for around a couple of hours so he had to go into hospital. But when he was in hospital they couldn’t find a reason why this happened, so they put it down to the hot weather. He has been referred to the heart specialist to see if there’s an underlying condition causing this as it does happen every now and again.

He had been retested for Pseudomonus as well as we think this has come back again, only been off the nebulisers for 1 month, so maybe a long term medication now. But waiting on the results of that.

We had a wonderful weekend in Chessington, was lovely to meet so many of the pals and families.

Thank you for the letters, cards & pictures & gifts the boys have received this month, always puts a smile on their faces. Thank you.

Update 9th August 2016

Aaron has been ok. We have now finished the antibiotic nebulisers, which he has had to have for 3 months due to Pseudomonas infection, which is an infection in the lungs, once you get it you never get rid of it, it stays there but you have to control it. So we have to wait and see if it flares up again now he is off the nebulisers. If it doesn’t then great, but if it does we have to give Aaron nebulisers twice a day every day, over the winter months and see how he goes from there.
We went away to the Isle of Wight last week. The week before was very eventful as we were trying to get everything ready, making sure everything was packed up, Aaron decided to spark a temperature when the weather was hot! He then decided that his heart rate was going to spike to a whopping 220. We tried everything to get it to come down, but to no avail. After a couple of hours of his heart rate still going at 220 we decided to call the Drs. for advice, as the hospital usually only give him paracetamol and ibuprofen to get his temp down. So thought I’d ring the GP first. After speaking to them, they advised 999, so 3 days before going on holiday a trip to A&E it was, but as soon as the ambulance arrived and he was put in the back of the ambulance, his heart rate decided to go back to normal. It was as though nothing was wrong with him. Usually it’s the sign of an infection brewing. Luckily, lots of tests were done, but nothing was showing up as to what had caused it, so they observed him for a few hours and prescribed antibiotics, just in case he was brewing an infection and then we were allowed home. He has now been referred to a heart specialist, as this happens quite often when he spikes a temperature, so maybe looking into what can be done to prevent it, whether it will mean an operation or medication, we are not sure!!
But when Aaron is feeling low and poorly all your post helps brighten his day. Thank you from the bottom of our hearts.

Update 3rd June 2016

Aaron is still continuing with the antibiotic nebulisers, and has been on them now for a month, another 2 months to go. All seems to be working at the moment, so hopefully things will get better. But if he gets poorly or gets a cold the Pseudomonas will probably return, so he will need to go back on to the nebulisers continuously through the winter. Then see how he goes over the summer months. He is still having problems with his legs and we still haven’t got an appointment through to see our consultant. So we will have to make a phone call on Monday to find out what’s happening. He is constantly needing pain killers to help with the muscle spasm, as he is not too happy sat in his chair for long periods of time. We have had a lovely half term holiday, Aaron has visited the Yorkshire wildlife park with his Grandma and Granddad, where he decided to break his footplate on his wheelchair. Luckily we got it fixed yesterday. He has also been into day respite care, where he spends time with other children and really enjoys it.

Thank you for all your lovely letters, postcards, drawings, cards & gifts, they do mean the world to us all.

Update 4th May 2016

Aaron has had quite a bad month. Firstly he was up most of the nights with a bad cough and chest infection, which resulted in 2 trips to the doctors and two lots of different antibiotics. They didn’t really seem to do much, so we contacted his respiratory nurse who came out and took a sputum sample. I then got a phone call to say he had a bacterial infection, Pseudomonus, which required immediate treatment. We had two options, as normal antibiotics do not treat the infection and the strain Aaron has got is resistant to oral antibiotics. So we had the options of IV treatment in hospital, which would require him staying in for 5 days to 4 weeks, depending how quick it worked  for him, or to stay home and have nebulisers twice a day for 3 months. Due to Aaron’s health and how quickly he catches infections, we decided to keep him at home and try the nebulisers. Hopefully this treatment will work and he will not require a hospital stay.

Also we are still waiting on an appointment for his legs. His leg trouble has started up again, causing his leg to freeze in certain positions, especially when changing from laying down to sitting up.His legs actually end up in the same position as he has been sat in, causing bad cramps and bad pain.

Fingers crossed we can get these sorted over the next month. But he always comes out the other end smiling, I often wonder how he does it!!

Thanks to Postpals and all the amazing volunteers who write to us and send gifts. It means so much and does put a smile in our house, cannot thank you all enough.

Update 2nd April 2016

Aaron has had a lovely birthday month, thank you to all who sent cards, letters and gifts! We took Aaron away for his birthday to a lovely place in Northumberland, which had its own sensory room and hydropool. Aaron had a fab time, unfortunately on return he has come down with a chest infection and is on antibiotics yet again, hopefully within the next few days he will turn a corner. His heart rate has spiked a few times, but with lots of TLC he has got through it, but lots of disturbed nights for both Aaron and us. He is now on the correct medications and has started to settle, luckily no hospital admission or 999 calls needed, very close, but managed to avoid it.
Again thank you to all who sent both the boys cards,letters and gifts this month.It does mean the world to us all and has made Aaron’s birthday and Easter very special.

Update 3rd March 2016

Aaron has been doing ok, we have had a few ups and downs due to leg problems again.We are waiting for an appointment to see the consultant to see if anything can be done and what could be causing it, as it’s beyond painful for Aaron. He cannot straighten his leg and is currently having to be given paracetamol and ibuprofen at regular intervals.

All your cards, letters and gifts really do cheer him up when he is down, and makes him and his brother smile.
Thank you, it does really mean the world to us.

Update 9th February 2016

Aaron has had a good January, he has settled back into the routine of school. But he is still having trouble with his legs and we are still waiting for an appointment to see the specialist. But with the help of his upped dosage of  muscle relaxant he is managing well and also his Radox bubble bath is helping. His stomach issues are still on-going, but again with the help of medication this is being managed.

Thank you to all who sends gifts, cards & letters, we love reading them all. We are in the process of trying to write back to people who send us post. So if you could pop your address on the letters, cards & parcels, we would love to write back to thank you all personally.

Update 5th January 2016

Aaron has had a good Christmas, better than last year, which saw him in hospital. We have recently found out that he has lost lots of weight due to his change in feed to help with his ongoing stomach issues. So put him on a gentler soya based feed, but this did not have enough calories, so he has lost nearly 2 stone since July. After talking with the dietician they have changed his feed again, fingers crossed it seems to be working and the weight is slowly going back on.
We are still waiting for  an appointment to see a specialist regarding leg issues, as he suffers badly with cramp.After speaking with Aaron’s consultant, he referred him to a leg specialist, so he can assess if his hip has dislocated again or if it’s his muscles that are going into spasm. If that’s the case he may need Botox injections or the muscles cutting slightly to relax them.He wakes regularly through the night with the spasm, so hopefully won’t be too long before he gets an  appointment.
Aaron’s chest has been ok, but we think the 3 antibiotics that he’s on for his stomach are helping with his chest.
Thank you to everyone who has sent cards, letters & gifts to the boys, it means so much to us all, from the bottom of our hearts, THANK YOU.

Update 2nd December 2015

Aaron is doing ok at the moment, he has been up and down but mainly with stomach infections.He is now on 3 lots of antibiotics once a month to help keep it at bay, but this has an effect on his bowels, so not nice for him. The dietician recently changed his feed due to his stomach problems and put him on a peptisorb type which is gentler on his stomach. This has caused him to lose over a stone since July, which isn’t good. Now his overnight ventilation is causing him problems, due to it  being loose fitting, as he has lost lots of weight on his face.So  we had to get the respirator out and have got to order new mask etc. Because it has got to have be tight to keep it working right, it is now causing blisters on his face, even though we have dressings for it. We are hoping to sort his feed out soon, ( I hope) we are waiting for the dietician to get back in touch with us regarding this ,as it can really affect his health if he loses too much weight,as he can’t fight the winter bugs.We also have an emergency appointment on Tuesday next week with our paediatrician, due to Aaron having a lot of pain in his joints. When we lift him out of his wheelchair his legs are so stiff and cramped he screams in pain until we stretch them out and massage them. It can take up to 1 hour for his muscles to relax, hopefully there’s nothing else going on and it’s just a case of upping his relaxant medication and not needing operations for it.

Update 14th August 2015

Aaron’s not had a great few months and has had lots of tests due to a stomach problem. We’re still not sure what’s causing the problem, but are trying lots of different things to solve it. His gastostromy feed has been changed to see if this is causing the issue (which has slightly improved things), but he’s still having discomfort and bad bowels. We’re back to see the stomach specialist at the beginning of September for test results and the next lot of investigations. Aaron may have to have cameras inside of his bowel to check that everything is okay, but it is a last resort. He has also suffered with his chest, resulting in a chest infection. The respiratory team are now putting him on constant antibiotics to see if this will help and fingers crossed he will have a better month now.

Aaron has enjoyed a holiday in Somerset recently. He loved being in the caravan, being by the sea, and being under trees and woodlands.

Thank you for all your post and gifts these past few months. It means so much to us (as a family) to still see smiles on the boys’ faces when they have such tough times. Their biggest smiles come from the help of Post Pals and the amazing people who take the time to think of them both.

Update 3rd May 2015 

Aaron has been well this last month, though he still had lots of hospital appointments due to him being quite poorly last year. We have had to see a heart specialist, due to high heart rate, to see if they can find what’s causing it to happen. It seems to be when he’s poorly or brewing an infection. They have said they can operate but at the moment it’s too risky, so we have decided to watch and wait to see if it occurs again and then discuss the matter further. We have also seen a kidney specialist, again due to his severe illness last year when he went into kidney failure, and we are still waiting on the results from that test.

Aaron is enjoying school and has settled back in well. Fingers crossed now the weather is improving slightly, that things continue and we stay out of hospital until at least the winter.

Thank you for all your kind thoughts, cards, letters and gifts for the boys. We appreciate every single one. We do sometimes struggle to reply but are hoping to get through them all in due course, as it means so much to us all.

Update 20th January 2015

Aaron and Matthew have both had it tough over the last few months. Aaron has had several chest infections from October and never really got over them. He also had his regular Botox injections beginning of December, which he recovered well from, then just two days before Christmas suffered with really high heart rate. This resulted in an ambulance ride to hospital and they had to get it under control with medication. He ended up being in hospital for a week with yet another chest infection, and we spent Christmas Day in hospital. It was not nice for either of the boys, but luckily a week later we get discharged and celebrated Christmas at New Year.

Aaron is now on the mend and enjoying settling back into school. Thank you to all of you who sent cards, Christmas cards, gifts etc, it really does make so much difference to the boys and makes them smile so much. We can’t thank you all enough as it means the world to us.

Update 18th November 2014

Aaron has had an up and down time of it over the last couple months. Now the winter has arrived and the colder weather, it causes aaron so much trouble. He’s had chest infection after chest infection resulting in lots of time off school and he has only done 4 days since the beginning of October. He has had different antibiotics but hopefully now he’s had the right one and has at last started to get back to normality (just about). He is still having a hard time at school and just doesn’t seem to want to be there. I think it is more to do with the fact that he wants to stay home and watch his television.

Thank you to all who have sent him and Matthew post as it does help put a smile on their faces, especially when they are not feeling too great. Fingers crossed the weather will not get too bad and we can stay out of hospital.

Update 8th October 2014

Aaron has had a good few months and he is now back enjoying school. He’s had a few illnesses (one resulting in a near dash to the hospital) but luckily with the support of his respiratory nurse we managed to keep him at home and look after him with the help of his ventilation and plenty of antibiotics. He is usually ok throughout the summer but now the cold weather is setting in and he’s back at school we are just waiting for all the bugs to start appearing.

Update 7th August 2014

Aaron has had a rough year this year. It started last October having his hip operation and being in pots for 8 weeks, to then this Easter having to be taken into hospital with what we thought was just his usual chest infection. However, the next thing we knew he was being rushed through into resuscitation and alarms were going off and all doctors and nurses were running around. Once he was stabilised he then got taken up to the children’s ward where he was put on oxygen, but things then went from bad to worse. His oxygen levels dropped and couldn’t be stabilised. They eventually got them stabilised, but with every doctor and nurse who was on the ward in the room with us I think – even an anaesthetist was called incase they needed ventilation. The next thing we knew he was being transferred to Sheffield Children’s Hospital by embrace (ambulance service).

It was the longest journey ever, even though it was only 30 minutes away. We arrived at Sheffield and when we got outside the doors, Aaron then had an SVT (abnormal heart rate) which went to high 200. We had to run through the A&E department on to ICU, where they were all waiting for him. Eventually, after 2 doses of heart medication, it stabilised. We were called into a side room and were told that he was critical and had had to be ventilated. It turned out he had pneumonia, a bowel infection that had led to septacemia, and he also had really low blood pressure as all his organs were starting to fail. The nurses were fantastic and fought to keep him here.

Luckily, 3 weeks later he was well enough to be transferred to HDU, but then came the problem that he wasn’t keeping his oxygen levels up at night. We were told that we may have to consider a trachy but after Aaron’s ENT specialist came to see him he thought he’d try to do a tongue procedure. This consisted of them shaving off the back of the tongue, removing his lateral tonsils, and opening his airways up. After only 30 minutes in theatre he was back on HDU, smiling as always. We were again told that because of the swelling he may need to be re ventilated as this had happened before. The next day he was fine with no apparent signs of distress and none came. The doctors and nurses were amazed at how he’d recovered. Luckily, after 32 days in hospital, we were finally told we could go home!!

Since being home he has done amazing well. He’s been so happy and smily until today, as he is a little under the weather but I think it is due to the heat and his brother having cold which he may be coming down with too.

Matthew was a star too as it was hard on him with us being away for so long. He stayed with his nanna and granddad and came to stay with us at weekends. The odd time we tried to get home to see him, he was so glad he cried and never left our sides. Now he always has fear that when we say Aaron has to go to hospital, even if just for a check up, he thinks the worse and that’s where all your lovely post and thoughts are brilliant – it makes him feel special and takes his mind off us not being there. All the post we got for Aaron as well was amazing. Especially the massive mickey mouse balloon, even the nurses loved him and wanted to pinch him, despite the fact he did scare them from time to time when he decided to move in the breeze!

Update 9th May 2014

Just a little update on Aaron. He is still in HDU but now back to his normal self. He is having a small operation today as the doctors think he has a very large tongue and it’s flopping backwards and obstructing his airways. They are going to slightly shave off the back of his tongue. It doesn’t sound nice but it’s meant to be like having your tonsils out. Hopefully this works as the next step is a trachy. Fingers crossed.

Update 30th April 2014

Aaron is truly a superstar. He’s been sat in his wheelchair for the first time in 3 weeks today. I didn’t think that would happen anytime soon. He is still taking things slowly but gradually getting there and hopefully we can get him home very soon.

Thank you to every one of you who has sent post to Aaron and Matthew, we even got a personalised photo from Mickey Mouse.

Update 26th April 2014

Aaron has now been moved to HDU. He’s doing so well. He had to have his second blood transfusion today, but it’s one step closer to home.

Update 25th April 2014

Aaron is doing well, he’s now off the ventilator and breathing well. He’s still needing support from his bi pap machine and oxygen, but he’s off the kidney dialysis machine for now to see how his kidneys go.

Update 22nd April 2014

Aaron is still on a ventilator in ICU. He’s on a kidney dialysis machine and they keep turning it off but his kidneys are still not wanting to work so has to go back on it. He’s doing well with the vent so hopefully he may be taken off later. He’s waking up very slowly but there is still a long road to go. He’s on TPN as he has got an infected bowel so can’t be fed at the moment. He’s had a right fight on his hands and at this precise minute he is starting to win this fight. Hopefully he’s still got the strength to fight it and we’ll get him home.

Update 19th April 2014

Just to let people know Aaron is seriously poorly in hospital. He’s in ICU on a ventilator, recovering from pneumonia and sepsis, which has caused his kidneys to shut down and so is on a kidney dialysis machine at the moment. Lots of things going on for him at the moment, it’s a very emotional roller coaster ride.

Update 6th December 2013

Aaron and Matthew have both had a tough time over the past month or so. Aaron has had major hip surgery which resulted in him having a 6 hour operation and 2 weeks in HDU, also needing a hip spica cast on his legs, which was removed on Monday and he is now undergoing intense physiotherapy as his leg does not want to work with being stuck in pots for 8 weeks. Aaron is in more pain now than when he had the operation as his muscles have all seized up, but slowly he’s getting there. We are all immensely proud of how he’s coped with the operation and having casts on for 8 weeks, he’s done so well and coped with it all and still come out of it with a smile on is face, he truly is an inspiration. He is also now on Bi Pap machine overnight, so that’s something else to contend with. There’s nothing like being thrown in at deep end, with operation and ventilation, as he has now been discovered as having sleep apnea. He’s not just shutting off his airways but also not taking deep enough breaths and getting rid of the carbon dioxide inside his body so he’s storing it up and causing high CO2 levels and low oxygen levels all at the same time. At the same time Matthew has also coped with it well and is an amazing support to his brother, he never moans and found it very tough while we were in hospital, so the post certainly helped cheer him up.

Again thank you so much for all the post the boys have both received, it makes them both feel special and it is lovely to see so many people care, it is so heart warming. Thank you is just not enough to express how much you all make them smile.

Thank you to all who sent Aaron and Matthew cards this month as they have both had a hard time of it with Aaron having major surgery and the cards made them both feel special. Thank you for all the letters received, each and every one gets read out to Aaron and the boys love hearing what you all get up to and where you have visited. It’s amazing to hear all your stories and to share them with us is truly heart warming. Thank you for all the lovely gifts received, as Aaron spent some time in hospital they really cheered him up, from music cds to dvd’s, to even receiving a funky pigeon, who sat on his hospital bed to keep him company along with a Mickey Mouse. The gifts certainly got him through a very tough time.

Update 31st August 2013

What a roller coaster of a month we’ve had. Firstly, we got a date for Aaron’s hip operation, so were all geared up for it, only to arrive at hospital to be told there was no bed for him. Then, after few changes, they decided they did have a bed so the operation would go ahead. Off we went to theatre to then discover Aaron had a very high temperature, so the operation was cancelled. He was admitted with a chest infection though, so the operation will hopefully be happening in the next few weeks. So, now we’ve got to prepare ourselves yet again, as we now know more about the operation and are not looking forward to it. Aaron’s got to go into HDU for as long as needs be due to the operation being quite major and it can lead to blood transfusion. He needs an epidural for pain relief and also a catheter fitted, and it’s going to be a long recovery period for Aaron. At the moment he’s just getting over his chest infection but doing it in true Aaron style, with a smile.

Aaron and Matthew have enjoyed receiving all your lovely cards and postcards, you all have created lots of smiles in our house. They have loved hearing all about what you all get up to in your letters, again lots of smiles created. Thank you from the bottom of our hearts for all the lovely gifts the boys have received, from DVDs and audio books to fuzzy felts, they do make the boys feel very special.

Post Pals is an amazing charity with wonderful people and we cannot thank you enough for the smiles they have given my boys.

Update 11th July 2013

Aaron’s had a good couple of months, he does suffer badly at times with choking but that is controlled with suction and medication. We are awaiting an appointment for his hip operation which will happen early August, which we are not looking forward to. Aaron will be in spica casts for up to 3-4 months depending on healing and recovery, so its going to be a very difficult time for him.

Thank you for all the cards and postcards received for Aaron and Matthew, they love hearing your stories and where you’ve been and what you’ve all seen. Thank you for all the letters received for the boys, they all get read out to Aaron and he loves hearing all about you. Thank you for all gifts received, Aaron and Matthew love receiving them and appreciate every one of them.

Update 11th May 2013

Aaron has been up and down this month, he still seems to be having problems with his stomach, and is not tolerating feeds very well for a few days then he springs back. Hopefully we will have more answers when go back to see the stomach specialist on Tuesday to see whether he has still got the bacterial infection. We are still awaiting a date for the hip operation which is happening in August sometime.

We are looking forward to hopefully getting to the Post Pals party this year and meeting up with Post Pals themselves and the senders of post.

Thank you to everyone who sent the boys postcards, they love looking at the pictures and reading all about your travels. Thank you to everyone who sends the boys letters as each one gets read out to Aaron and lots of smiles are created by these letters. Thank you to everyone who sends the boys gifts to as they love each and every one of them.

Update 7th April 2013

Aaron has had it tough this year up to now. After discovering he has helicabacter infection, he has now finished all treatment and it has made him so much happier. We don’t know how he’s coped with it for so many years, it must have been extremely uncomfortable for so so long. He still has symptoms from time to time but not half as bad as he did.

We are now awaiting an appointment for major hip surgery as he has a partially dislocated hip, which should be happening around August time, which will leave him in spica casts for up to 8-12 weeks. Something we are not looking forward to! It will not be nice for Aaron as he likes to kick and move his legs and has just figured out how to push himself if he digs his ankles into the floor.

We would like to thank everyone who sends the boys cards/postcards – each and every one gets read out to Aaron, they do make him smile so much. We would like to thank every one who sends the boys letters, they do brighten their day and make them smile and feel special. We have had amazing gifts this month and they do make the boys feel very special and thought of so much, it is amazing to think so many people understand and care, thank you is not enough for the kind people from Post Pals.

From the bottom of our hearts we say a very big thank you, Aaron has had it tough this year so far and it is amazing to know so many people care.

Update 5th February 2013

Aaron has had it quite tough over the last couple of months, he has undergone various operations and tests, including botox injections in mouth to help with excess salvia and choking, also botox injections in leg muscles and had hip investigations which is requiring major surgery in August time, meaning he will be in spica casts for up to 3 months and will be fully housebound. Also, he has had camera investigations into stomach and it has been discovered that he is suffering from helicobacter infection causing bad stomach cramps and sickness with every feed. He has been put on yet more medication, had 2 week course of antibiotics which made such a difference for him as the specialist told us he has probably had this condition since pre school age(!) and it has never been picked up before!! Aaron then stopped the antibiotics which made all the symptoms return so has been put on another 2 week course to see what happens this time. The 2 weeks of antibiotics should clear it up, but as yet that hasn’t happened.

Aaron and Matthew enjoy reading all your cards and postcards and stories of what you all get up to! They both love all the gifts they receive too, they make the boys smile so much. It is so nice to know there are so many lovely people out there. Keep up the fantastic work Post Pals!

Update 11th December 2012

Aaron has had a tough couple of months, he has been having lots of investigations to find out why he’s struggling to take his feeds and why he is not quite himself at the moment. He seems to be constantly in pain and was admitted last week for a colonoscopy and also a camera down his throat to assess if anything going off inside. They have discovered inflammation of the bowel and have prescribed 6 weeks steroid medication. We are due back at the consultant on 8th January for all results, then back to hospital on 18th January for botox injections to his legs and maybe a hip operation (depending on pre-op assessment on 8th January).

However, all the post the boys are both receiving are making them feel very special and helping them to cope while in and out of hospital. Aaron enjoys all the cards/postcards that he receives, he loves looking at all the cards/postcards from all over the world and Matthew loves receiving them too. Aaron has enjoyed each and everyone of all your letters, all get personally read out to him one by one and he loves to hear all the stories and all the adventures that everyone gets up to, as does Matthew. Aaron and Matthew have also both enjoyed all the gifts that they have received, from all over the world.

Update 9th September 2012

Aaron has been up and down health wise. He made one day back at school after the summer holiday, then has been off the rest of the week poorly, but luckily is back to school tomorrow.

He was supposed to be having Botox injection into his leg/thigh muscles through the summer holidays but on our admission to hospital was told 3 hours later after they had him all ready for theatre that he was too high risk to operate. Now we’ve got to wait to see which consultant is brave enough to do it. I wouldn’t mind, but he’s had loads of anesthetics before and he does have a bit of bad time with them, but they should have already got his notes and been made aware of this. So now we’ve just got to wait until his surgeon comes back from his holidays to see where to go from here. In the mean time Aaron has to suffer in pain waiting to see when he can have these injections and also assessment for major hip operation.

He also undergoes botox injections to his salvia glands every 6-8 months which again is by general anesthetic, but it really helps him as he tends to choke on his secretions when getting ready for more botox. Mind you, last time they gave him too much and made him too dry.

We are also seeing his gastro surgeon on Tuesday as he is having a few problems with tube feeding at the minute. He always seems to be struggling to keep his feeds down and can become very poorly quickly, it is like a stomach bug which he never seems to get rid of and reoccurs every couple of weeks. We have to knock his feeds down or starve him for 24 hours to help him, but it is happening too often at the moment so we’re going to see if they can do tests to discover what is happening, if anything.

Aaron did enjoy going on holiday in August to Norfolk and was really well while there. He enjoyed going for a day out on a wheelchair boat that we hired! He also like laying and relaxing by the pool, even going for a swim which he loved.

Aaron and Matthew both enjoy receiving all your cards/postcards etc, each and every one gets read out to Aaron and they produce lots of smiles!! They also love receiving all your letters and hearing what you all get up – Aaron loves listening to us tell him all about your letters and again it produce lots of smiles and even giggles. All the gifts that the boys receive are truly amazing and they love each and every one of them, thank you.

Update 23rd February 2012

Aaron has had some down times lately due to infections, stomach bugs etc, and we have recently been to Sheffield for sleep study results too. He has to have them repeated in the next couple of weeks due to lots of coughing during the night, so has been put on a 4 weeks course of antibiotics which has caused stomach upsets. He then has to be reviewed to see whether he needs more antibiotics or whether the cough has subsided. At the moment the cough is still there but seems slightly better.

Before Christmas he had small operation to have botox injected into his salvia glands to help with choking, which has worked successfully. He did have a bad time in the operation due to sats dropping throughout the operation, but hopefully this will last another 6 months before having to go through it again.

Aaron has enjoyed receiving all your cards and postcards – as he has been quite unwell throughout this month with various bugs etc, the post has made him smile lots. Thank you. Aaron has loved receiving all your letters too and hearing all your news and what you are all getting up to. As he unable to read himself, every single letter gets read to him and he always smiles. They do really brighten up his day. Aaron has loved receiving all your gifts – from Mickey mouse stickers, to wall stickers for his bedroom, gelli-bath and upside down mirror which he loves looking at things upside down with!! He always has a smile when receiving gifts. A very big thank you to everyone who sends the boys post, you put a huge smile on both their faces.

Update 30th November 2011

Aaron has not had too many chest infections as yet, but as the cold weather approaches we’re just waiting for them to arrive. I’m hoping that he’s going to have a happy Christmas, as he has not had a very good one for the last 2 years and has ended up in hospital shortly afterwards.

In October he underwent surgery for Botox injected into salvia glands to help with his secretions. His oxygen levels were also dropping throughout the night, so while he was under anaesthetic they were going to do an endoscopy of his nose and throat to check his adenoids, to see if were obstructing his airway in any way. The surgeon did mention he would like to do an endoscopy while he is awake, but I don’t think that will happen, as no way can Aaron have it done while awake as he won’t keep still enough!! When he came out of theatre Aaron decided to have trouble breathing which scared not only us, but the surgeon and anaesthetist too. He was making a really funny noise and they first thought that his windpipe had collapsed and were all poised to intubate him, but luckily he decided to start behaving and didn’t need the tube down, to the relief of everybody!!

He recently had an appointment for his hips. We have been visiting clinic for a couple years now and his hips are getting worse as his right hip is displacing from the socket. He has been having x-rays on it for months now and the last time we went (3 months ago) there was talk that he will eventually need an operation to put it back into socket. This time at clinic, there was no change since the x-ray 3 months ago, so we’ve decided to leave alone at the moment and go back in 6 months. We’re dreading the day they say he has to have it done, as it doesn’t sound very nice, but we’ll cross that bridge when we get to it.

We have been to visit Santa a couple of times which Aaron just loves – think we’ve only got another 3 to see! Aaron loves going, he has the biggest smile!

Fingers crossed we have a good Christmas and Aaron’s health lets him enjoy it for the first time in few years. We want to see those big smiles on Christmas day Aaron!!

I’d just like to thank everyone from the bottom of our hearts for all the cards/postcards/letters and gifts that the boys receive, it really means so much to all of us. Thank you to all who send Aaron and Matthew cards/postcards and letters too. They love listening/reading what you all get up to, and where you’ve been on holidays etc. They really do mean a lot to us all and make the boys smile and feel special. Thank you also for the gifts received, they love the gifts that come, from balloons, drawing/writing things, puppet making, story books/musical books, it does brighten their day when they’re having a bit of a rough time. I think Post Pals is such a wonderful site, Viks and the team of volunteers deserve a special award as the dedication they put in is incredible.

Just one last thing – we wish you all a very HAPPY CHRISTMAS!!!!!!

Update 9th August 2011

Aaron had a rough start at the beginning of the year and was very poorly with pneumonia, but he has now got over that. He’s had a bad time since Christmas with bad chest infections/tummy bugs and he seems to just get over one thing then gets another.

We have enjoyed trying out a new bike which we hired from our local wood; it’s a bike where you wheel Aaron on to the front of the bike. He thought it was amazing as he loves going under trees and through the woods.

Aaron’s recently had a hip appointment as his hip is starting to slip out of the joint. We were told at this appointment that it has got a lot worse over the past 6 months. We’ve got to go back in 3 months and if it’s still looking like it could slip out and cause dislocation then it will have to be operated on. We’re hoping it’s not too bad when go back but it’s not looking good.

Aaron’s also had a sleep clinic appointment and an overnight study done. We’re still awaiting results but were told lots happened with him, so it’s looking like he may have sleep apnea, but it could be up to 4 weeks before results are totally in.

He’s also got an appointment at Sheffield Children’s hospital next week as he’s having trouble with secretions again and it is causing him to choke quite badly. It’s also upsetting his stomach, so is causing lots of retching with his gastostromy feeds. Hopefully he can have another dose of Botox in his salvia glands, as it helped when he had it 6 months ago.

He still manages to smile in between all this, especially when your letters / cards/ gifts arrive. Words cannot express what a wonderful thing Post Pals is and how wonderful people are. Aaron amazes us all where he finds his inner strength to keep smiling.

Aaron and Matthew love receiving post and hearing from you all and what you get up to. Sorry if we haven’t written back but we are in the process of returning letters, they are a bit delayed at the moment with Aaron being poorly, but the letters always make the boys smile. Thank you to all who send Aaron and Matthew gifts too, as they love receiving them. The smiles on their faces when receiving any mail just makes our day, and of course the boys. We’ve enjoyed making solar systems, sock puppets, sticking stickers, Mickey Mouse glow in the dark stickers (which we are saving for Aaron when he has his bedroom decorated in Mickey Mouse). Post Pals is a wonderful thing, it’s so nice to know people care, and Viks and the team do a fantastic job.

Update 29th June 2011

Aaron had a bad start to the year. He was really poorly over Christmas and didn’t even open his presents until January as was just too poorly. He was admitted to hospital on New Years Day as his oxygen was in its low 70’s. He had blood tests taken to find what was wrong and it was suspected that he had developed pneumonia. He was on iv antibiotics and was in hospital for just over a week. He is well known on the ward and all know his name.

It took him a while to get back to normal, as it always takes him a good month to completely recover.

We then had a good run with Aaron. When he was in hospital his oxygen levels kept dropping to low 40’s at night, so we have now got to go into Sheffield hospital overnight for sleep apnea testing, which is happening on 2nd August.

In May we went to Mexico with Aaron’s grandma and granddad. There were 11 of us altogether and we had a great time. We went on a pirate boat with Captain Jack Sparrow and Aaron was allowed on first to meet the pirates and have his picture taken. We also went swimming with the dolphins, which Aaron loved and he smiled the whole time.

Aaron suffered quite badly on the flight home as it was a night flight and he got a lot of cramp in his legs, but he finally fell asleep across me.

He went back to school then came down with a sickness bug, so had more time off school. He was just about to go back to school then he came down with a chest infection, so more antibiotics. Aaron was off school for about 2 1/2 weeks in total. He is now finally back to school and enjoying it.

When he is poorly your post just brings a smile to his face, he loves receiving all post. It is wonderful how you all send post to Aaron and Matthew also gets excited when he receives post – they can’t wait to open it! I would like to thank everyone who sends Aaron and Matthew cards/postcards, as they love receiving them from all over the world. It does really brighten their day reading happy news about what you are all up to. The cards really do make them smile. Again, thank you to all who send Aaron and Matthew letters, they love reading all your stories and places you’ve been. They love receiving Dottie the Dalmatian stories too. Thank you to everyone who has also sent gifts, they love opening them, the excitement on their faces is indescribable. It’s lovely that Matthew gets gifts too as when his brother is having bad days and is poorly it makes him feel special. You don’t know what that means to us as a family.

Update 17th May 2011

Thank you to all for Aaron and Matthew’s lovely cards, letters and gifts, especially their Easter gifts, it really does brighten their day.

Update 31st March 2011

Thank you to everyone who sent Aaron cards, letters and birthday wishes, as really did make his birthday special. Aaron loved the pom pom – huge thank you!!

He is poorly at the minute with a sickness bug which hopefully won’t last long.


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Daisy N

17 March 2011

Story written 2009

Daisy was born 3 days before Christmas in 2004 and was 2 months early. She spent 8 weeks in the neonatal unit and was diagnosed with Costello Syndrome. She spent most of her first year in hospital, both locally and in Great Ormond Street, and was diagnosed with a number of issues including a heart defect, visual impairment, and severe gastrointestinal problems. Children with Costello Syndrome are at a 17% increase risk of developing malignant tumours and she is screened for these every 3 months.

In spite of her diagnosis of Costello Syndrome, Daisy’s clinical issues have not always been typical of a Costello Child, and her geneticists are now testing her blood to see if she also has another syndrome running in parallel and making her completely unique.

Her struggles with her gastrointestinal system came to a crisis earlier this year- she has always been tube fed and normally spends around 20 hours a day attached to a feed pump. However, in September, her symptoms worsened and her Doctors at Great Ormond Street discovered she has aggressive pan-enteric colitis. This is where the entire gastrointestinal system is scarred and ulcerated. It has been caused by her immune system going haywire and attacking her gut.

Since this diagnosis, Daisy has been dependent on Total Parenteral Nutrition (nutrition through a vein) for all her nutritional needs. The initial treatment to manage her condition with massive amounts of steroids has not worked and she is now on large amounts of immunosuppressants. As her immune system is not functioning properly, she is at high risk of infection and is currently on large doses of highly toxic antibiotics to manage a blood infection.

She has been in hospital for the past 6 months and is likely to remain here (with regular visits to Great Ormond Street) at least until early summer.

The diagnosis of Costello Syndrome meant Daisy had a reduced life expectancy because of the associated risks and problems. Her severe gastrointestinal disease and autoimmune issues have reduced that prognosis further.

Every day with Daisy is a blessing, she is a much loved and treasured daughter and younger sister to her 3 other siblings.

She faces each challenge with positivity and a fighting spirit and her strength of character and happy nature keep us going through the tough times.

Update March 2013

Thank you to everyone who has sent amazing post and gifts to Daisy recently – she is truly a very lucky girl!

However, Daisy has decided to take a little break from Post Pals so that other children can share in the smiles – she asks that you send post to those pals currently in hospital or on chemo and also the memorial siblings. Her special friends are Poppy H, Lydia M and Nico R (brother of Alicia R memorial Pal) – so if you were planning post for Daisy, please maybe think about these friends. Thank you xxxx

Update 20th October 2012

Sadly as I write this Daisy is facing the prospect of yet another major surgery, she has been having more and more problems with her bladder over the summer and while she was in hospital this summer having her hickman line changed (as the result of a break and infection), her urology surgeon had a good look at her mitrofanoff stoma which we use to catheterise her bladder. It has prolapsed but that in itself does not explain all the pain so he has decided to operate to have a better look and repair the prolapse. Daisy also had another admission this summer for endoscopies – these show continuing inflammation in what remains of her small bowel. The small segment of large bowel that remains, her rectum, is severely inflamed and bleeds almost daily – as a result her surgeons have decided to perform a rectal excision.

She will therefore return to Great Ormond Street on November 9th for a major 5 hour surgery to take down and repair her mitrofanoff, remove her rectum and deal with any other issues they find – as always Daisy’s recovery time will be up to her and it may be weeks or months, but we will do our utmost to get her home as soon as she is off any intravenous pain relief. She really does not want to go into hospital again but her quality of life has deteriorated quite considerably over the past few weeks and she is becoming very exhausted and finding it difficult to manage the pain in school, often becoming angry and cross with her classmates which is so unusual for her, she also spends much of the weekend catching up on sleep and in her bed or wheelchair. The palliative team have pushed up her pain management regimen to tide her over until surgery.

If this wasn’t enough, we also begin long overdue investigations on the very real possibility that Daisy has occult spina bifida and a tethered spinal cord. If this does prove to be the case (it is known that with Costello Syndrome that this can occur) she will also need surgery on her spine to prevent further damage to her nerves. Sadly any damage that has occurred is now irreversible. Life is stressful and our other children find it very difficult to see Daisy in so much pain, particularly her big brother, Theo, who has a diagnosis of Asperger’s syndrome and is in his very crucial GCSE year in school.

Despite everything though we have had a good year so far, maximising time away from hospital by managing as much of her care at home as possible. We had a fantastic time at the Olympics and Paralympics and thanks to a new dry suit, generously funded by a charity, Daisy has been able to go swimming both at our hospice and at school without the risk of her stoma bag leaking, catheter coming out, or water getting into her hickman line.

Her regular post from Pals makes her day, especially our good friends Glad, Kim, Jenny & Kate and surprises like balloons and cards from Viks at Post Pals really do make Daisy’s day – she loves to get post and takes great pleasure in opening it up and looking at pictures on cards. We have had a lot of problems with our post office recently and despite arranging redeliveries these have on occasion not happened and parcels have been sent back, also sometimes post is delivered to the wrong house and it can be weeks before it gets to us – apologies if you are one of those people who has sent Daisy post which was returned, it’s out of our hands at the moment but we are working on a different c/o address which is a bit more reliable! In the meantime, to each and every one of you who writes to Daisy, thank you, our lives are very very stressful and busy with 2 children with additional needs and two others who also need our very limited time, we wish we could write back to everyone but please know that every piece of post is treasured as it makes our girl, and us, so happy to know that people are thinking of her and care. I will update when we know which ward we will be on in Great Ormond Street as Daisy will need her post more than ever then.

Update 6th May 2012

So many apologies for not updating, a lot has happened since our last update. Daisy had her colectomy surgery and her appendix was used to form a mitrofanoff channel to her bladder to catheterise her. She stayed in hospital for a couple of months but fortunately we were home in time to spend a lovely Christmas break at our Hospice. We have struggled and struggled with Daisy’s pain and infections and now I administer two Intravenous drugs to her nightly as well as her TPN together with a cocktail of medication which keep her bugs at an acceptable level and help manage the pain. We have had to resort to a couple of hospital admissions when her pain has been uncontrollable at home but now with the support of all of Daisy’s team we have agreed that all care is to be managed at home and we are all working to make sure she is kept out of hospital. There are no more procedures or surgeries that Daisy can now have that will offer any hope of cure or treatment, every thing is aimed at managing her symptoms and maximising her quality of life.

Saying this, she is having amazing quality of life at the moment, being at home for the longest period in her life has made her so happy, for the first time ever she managed a complete term at school and she is progressing so well, learning to read and has now started weekly horse riding lessons too, something we thought we would never see. It’s hard work having Daisy at home and having to manage all her medical care, some of which is so specialised many trained nurses are unable to undertake it! It is so brilliant to be a family together again though; we even managed a short break to France at Easter, amazing!

I have to say the biggest, thank yous to two amazing Pals – Glad Shrubshall and Kim Lawrence – the regular post and gifts from them make Daisy so happy, it’s just so lovely that we are very much part of their lives, they are part of ours as we always recognise the handwriting on cards and Daisy loves to hear all about Baby Stevie, Kim’s little boy! I hope we get to meet Glad and Kim one day, they are such special people! We are also looking forward to meeting lots of Pals and Viks and Kate plus hopefully Jen M at the Summer Post Pals Party. We have so much to look forward to this year, we are living life to the full and living for the day and trying not to worry about the future – as I often remind myself “Yesterday is History, tomorrow is a mystery, today is a gift, that’s why it’s called the present”. You can read more about Daisy on my blog too.

Update 29th August 2011

Daisy is back in hospital at the moment. We have basically been in and out of hospital since February and have not had more than 2 weeks at home in a row or more than 2 weeks off IVs.

We made the decision for Daisy to have the colectomy surgery and this is planned for 9th September as a joint procedure with a Mitrofanoff procedure to her bladder. These are both major surgeries and we anticipate she will go to PICU post surgery and remain in GOS for around 3 months to recover. She will be going onto Squirrel Ward and will be admitted on 8th September.

We have such lovely people writing to the family, it gives us such comfort to know that people are thinking of us and we are not forgotten about – Daisy just loves getting post and gets so excited opening parcels or seeing her cards. Jenny, Glad, Rosie, Wendy & Kim are regular writers and we so appreciate hearing from them and all our Pals – we know you all have busy lives and it’s so kind that you give some of your time to help our little girl smile so much.

The children had a family discussion about Post Pals recently and they all decided that they love receiving Post Pals mail but they know that as a family of four there are more than the average number of children to buy for. The boys have asked if they could not have presents bought for them but they do enjoy the cards and letters. Xanthe loves receiving craft/art sets so that she can do them with Daisy but they unanimously said that the greatest pleasure is seeing Daisy receive presents and they would rather she gets gifts than them (unless they are things that they can do with Daisy, as in Xanthe’s case).

Update 9th June 2011

After 15 long and stressful weeks which included 8 anesthetics, Daisy has transferred to her beloved Chase Hospice for some respite for a couple of weeks. She has been left battered and bruised and mentally and physically traumatized by this stay. Sadly she will come home on even more pain killers and drugs and needing more interventions than before and this will be the story from now on. The doctors are now discussing her next major surgery which will be a full proctocolectomy and whether this is even safe to perform on her. Our only hope of this surgery is that it will remove the colitis which is the reason she is on immunosuppressants and steroids which greatly increase her risk of infection. We hope that we will get our longed for summer at home together as a family so that we can fill our days with happy family times and memories.

Daisy’s determination, strength and courage are inspirational. Thank you to everyone who writes to her – believe me, the cards and gifts really do make her day.

Update 31st May 2011

We had hoped to transfer to the hospice today but unfortunately Daisy’s hickman line has migrated and she will have emergency surgery tomorrow to remove it and repair the damage to her vein.

Update 25th May 2011

We’re still here in GOS. We are hoping to be home for the summer and then returning in the Autumn for the biggest surgery ever. Daisy loves to get post and Kate D saw how excited she gets when she visited us! It can really really brighten a long, stressful day.

Update 21st May 2011

Daisy is quite poorly at the mo and starting her 14th week in Great Ormond Street. She has had high temps for over a week despite being on several different IV antibiotics, her line cultures are negative but the docs are presuming this is the source of the infection as she is septic. The line is coming out on Monday and we are all keeping everything crossed she turns the corner then. She then needs a new catheter under GA and a new line, both done as separate procedures so 3 more anaesthetics to look forward to.

Update 26th April 2011

Thanks to all our pals for the lovely Easter gifts and cards – they really really brightened the children’s holidays and Daisy’s hospital wall.

We are waiting for a date for Daisy’s bladder surgery and to reduce TPN to a more manageable level. Still hoping to transfer to our hospice for a respite break in the summer half term then home – fingers and toes crossed!!

Update 15th April 2011

It has been two steps forward and one step back, as always with Daisy. This week we restarted feeds at 5mls an hour but it caused her bowel to prolapse and as it was losing blood supply and turning black, we were in danger of losing a 5cm segment. Cue the emergency bleep to surgeons who had to act immediately to save the bowel.

Good news is that pain meds through the jejenum have been restarted successfully and next week we hope to wean her off the IV ketamine. Bad news is that a suprapubic catheter is looking likely, so that will be 5 stomas/pieces of plastic tubing she needs to keep going. All milk feeds have been stopped but we are making progress, albeit in baby steps.

Update 7th April 2011

Hi all, Daisy has been in GOS for 7 weeks now, 6 of them on 24 hour TPN and IV ketamine. She’s currently in theatre having a surgical jejenostomy place so that we can have better access for painkillers which can be given when she is at home. The surgery involves creating another stoma which we know will set her back for a while as she does not respond well to anaesthetic or surgery, but we can begin to move forward once she has recovered from it and hopefully be home for the summer!!

Update 30th March 2011

Tomorrow we will start week 6 in hospital. We have been told that Daisy will be here for at least a couple more months and we will then go to the hospice for a stay before coming home.

It has been decided that the proctocolectomy surgery would be too dangerous for Daisy at the moment, so the doctors are trying to treat her with iv steroids. She has been on 24 hour tpn for the past month and the plan is hopefully for her to have surgery on her small bowel, to form a surgical jejenostomy so that she no longer needs a transgastric jej, and if it comes out again I can be trained to replace it.

We are waiting for a slot to have an MRI under General Anaesthetic to screen for tumours as Daisy has a very increased risk of tumour formation and the doctors are concerned this is the cause of her pain. The likelihood is that when we do get home it will be on intravenous pain relief; she has been on continuous ketamine for the past month supplemented with tramadol. She had a bad reaction to morphine so this is no longer an option.

On top of everything else she has already had two infections and IV antibiotics since being in hospital. Because she is permanently attached to drips and pumps we have not been able to leave her room and this means that family visits with the three other children can be very trying! We are finding this stay particularly hard as we just don’t seem to have had a break from the relentless hospitalisations and bad news for years. It was 3 months since her last admission and that was the longest we had spent at home in a continuous period since 2008. Everyone is working hard at getting Daisy home but it has to be at her pace and in a way that means she can stay at home for as long as possible and we can be together as a family.

Jenny Ault has been such a star at making sure none of us are forgotten and thanks too to Jane B, Kate D, Kim L, Viks & the Post Pals gang. Big thanks to the person whose name I have forgotten who sent the little Monkey tree house playset to Daisy. She has played with it constantly and I am on the lookout for similar sets as she has had such fun with it!!!

Update 3rd March 2011

Sorry for not updating for ages, as always life has been full on here. We had a lovely Christmas and on the whole things have been reasonably stable apart from the continued high stoma output and Daisy’s worsening night-time pain which is requiring stronger and stronger drugs. However we have not needed to make any middle of the night hospital visits which is the best thing.

We are now at the point that total removal of Daisy’s large bowel is looking like the best option. She is due to go back into Great Ormond Street for a week’s stay, during which she will have two procedures under two separate General Anaesthetics to look at her bowel function and also to replace her trans-gastric jejenostomy tube which came out again this week. We hope to meet with her surgeon to discuss the colectomy surgery and probable placement of a surgical jejenostomy tube which I could be trained to replace doing away with the need for an anaesthetic. We will also be discussing small bowel transplantation – although Daisy’s large bowel is completely dysfunctional and will be removed, it also looks like her small bowel is also dysfunctional in that it works too quickly – her options are either a lifetime on TPN with all the risks involved or small bowel transplant. At this point we don’t know if she would be a candidate, no child with Costello Syndrome has ever received a transplanted organ (or even had complete intestinal failure) so the risks may outweigh the benefits, but for Daisy’s sake we have to leave no stone unturned even if it is a route we do not pursue, we owe it to her to have tried…

At the same time as this has all been happening we have been coming to terms with Theo’s diagnosis of Aspergers Syndrome, something we had suspected for a long while. The turmoil of living with a child like Daisy is intensified when you have Aspergers Syndrome and crave routine and order and this has caused Theo considerable anxiety. We are currently going through the process of putting in place the support he needs and supporting him with his needs. I don’t think an easy path was mapped out for our family but we keep rising to the challenges!

Big thank you’s as always to all our Pals, our children love getting post and being remembered – Christmas was lovely with all their gifts from elves and thanks also to Jenny for taking our children under her wing – Jules loves her letters, especially the ones about all the scary creepy crawlies and spiders and snakes!! Daisy loves cards – especially the ones made by Kim’s Grandmother, they are works of art! Thank you for all you do, I feel guilty that I just no longer have time to thank everyone individually but please know that your cards and gifts really do make a difference and make our children smile!

Update 17th November 2010

A million apologies for not updating sooner, life continues to be hectic.

Daisy left hospital in early September and returned to her beloved school. She managed to have a whole 6 weeks at home, the longest she has been out of hospital in 2 years, which was wonderful, however by week 6 she had yet another infection and ended up back at our local hospital on IV antibiotics. The course of this infection was not as straightforward as before, her stoma poured out making her very dehydrated and needing a lot more iv fluid, she also seems to have become resistant to one of the IV antibiotics we normally use for her so these have all had to be changed. We transferred to our hospice for respite from hospital and she came home needing even more TPN than before to make up for her very low sodium and potassium levels and massive fluid output. Great Ormond Street would like her to come back in for another inpatient stay soon and we have negotiated this for the New Year as we really don’t want any hospital stays before Christmas if possible. They are hoping to see if there is anything that can be done to slow down her small bowel which is in overdrive, conversely, her now defunctioned large colon does not work and still causes her pain, especially as she continues to lose mucous and blood from her bottom even though she has an ileostomy. Andy and I have also decided that following this next in patient stay we will start seeking second opinions on Daisy’s management and treatment. At the moment all care is palliative and we have been told that a small bowel transplant is out of the question; however we do not want to leave any stone unturned in ensuring that Daisy has the best and longest quality of life possible.

Medical issues aside, we have had the most amazing experience this month – the whole family were taken away for a holiday of a lifetime to Florida, staying in a village specifically for life limited children and visiting the Florida Theme Parks – it was like something out of a dream for us all, we were part of a group of 22 families, supported by volunteer helpers and medics and were treated like VIPs everywhere we went. Daisy had the most wonderful time, the week before we were due to fly she was still in hospital, but in true Daisy style she made it and was fantastic for the whole week. It has given us all a boost, and the happiest memories we will treasure forever. We are now looking forward to celebrating Daisy’s 6th birthday on the 22nd December, there have been times over the past few years we did not think we would get this far, but Daisy is the most determined little girl ever and she embraces life to the full. She is wonderful and we are so happy that we have her!

Update 13th August 2010

Hi everyone – for those who don’t see my facebook updates, I have not had chance to blog for a while as Daisy remains in hospital following her ileostomy surgery. Following problems with post surgery infections, she then spiked temps last week as a result of her chronic bacterial overgrowth and the inflammation in her bowel coming back, then just as she was picking up she contracted parainfluenza!

On top of all of this her stoma output is massive, meaning she is on TPN for 20 hours a day plus fluid boluses and piggyback fluids and is still getting dehydrated – until this is more manageable she cannot go home and because of her problems with bacterial overgrowth and the flu, has been stuck in her room bar a couple of visits out for the entire stay. We hope to be able to get her to about 16 hours TPN and top up fluids and at this point we will be allowed (hopefully) to go home with regular bloods to make sure she is not becoming dehydrated.

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Faith L

17 March 2011

Story written 2011

Faith became ill with a cough at 2 weeks old and at 5 weeks old she was admitted to hospital for ‘overnight’ observations, as her cough was not clearing. Two weeks later Faith came home having suffered whooping cough, croup and RSV. Faith also had a diagnosis of asthma and as a precaution was being tested for Cystic Fibrosis.

The results were unclear and by 8 months and several chest infections later, Faith was readmitted. Faith was very unwell and had lost several pounds in weight and was hanging onto life. With cannula’s, NG tubes and oxygen in place, Faith continued to decline and as her parent I prepared for the worst. As a final stab in the dark, Faith was retested for Cystic Fibrosis. The test came back positive and treatment began with intensity. Faith has had many ups and downs spending long periods of time in hospital and on intravenous antibiotics.

At the age of 9, Faith had her appendix removed in an emergency operation and a few weeks later developed an eye infection which again needed a hospital stay to clear an abscess in the back of her eye.

That summer, age 10, Faith was admitted with hip pain and over the next 2 weeks several joints became swollen and painful. In the summer of 2010, aged 12, Faith was finally diagnosed with Juvenile Idiopathic Arthritis, which means she has arthritis in more than 4 joints. Faith has it in her wrists, ankles, knees, shoulders and possibly hips.

Faith is a brave girl who rarely feels sorry for herself but like all children could really be helped with a smile or two.

Update 29th January 2014

Firstly can we thank everyone who sent Faith a card or gift over the Christmas period and also for all the support we have received.

It is with a lot of consideration we have decided to move Faith on from Post Pals as she is doing fairly well right now and in her last year at school. GCSE’s are fast approaching and she feels more able to cope with illness and admissions to hospital now. Faith has asked if her space could be taken by a younger child who will receive the love and support she has had over the past 3 years.

As her Mum, can I thank everyone who started as strangers and became supportive loving friends to us all. You have lived our ups and downs with us and we thank you all. You have created so many smiles for both Faith and Alice and it has meant so much.

I will post to Facebook the odd update if that’s ok as Faith will want to share her beautiful Prom pictures and exam results for the amazing people who have supported her.

As we leave Post Pals with happy memories, we thank you for everything, but especially our fabulous holiday and the friends we have made. To see your child smile because of a stranger is a truly humbling experience and one you can all be proud of.

Keep smiling and thank you. Love Kerri, Faith and Alice.

Update 4th December 2013

Faith has had a fairly ok month, she has continued to improve with her chest thanks to her inhaled antibiotic, and she has been able to attend school with no missed days which is fab. I had parents evening and Faith has, with a lot of hard work on her behalf, managed to really catch up with her GCSE’s, and is doing extremely well. It was a very proud moment to be told she is in with a really good chance of gaining an A grade in her child development exam!! We also looked into both 6th form and college, Faith wants to follow photography at college and we are waiting to hear if she can get an interview on a course that will give her a BTEC Level 3. It is a mixture of excitement and dread (my baby is growing up).

Faith had her ‘fake baby’ for a weekend this month and although it was hard work she enjoyed playing ‘mum’ and has realised babies are hard work, especially in the night.

Health wise Faith has been ok but she did have a very nasty fall at school and landed badly on her side, knocking her knee and ended up with a bruised knee that was very swollen and a deep bruise on her thigh that took 10 days to fully come out and is nearly gone now.

We have, as ever, enjoyed reading all the smiles that have been sent and it is very exciting already getting bits to sit under the Christmas tree. Our very special thanks go to Becci Willets who (whilst on holiday) kept us very happy as she sent an amazing cream tea through the post – all 3 of us sat down today after school and enjoyed every mouthful, she must know us too well as it’s a firm favourite treat in this household.

We have been busy getting ready for Christmas and as I (mum) am due an operation on 6/12 we have already put the tree up – this year we got a real one and we love it. Faith is especially proud of the lovely angel that she has with her name on, a lovely gift from Harry. We had a lovely day in London on Monday as we were lucky to be given tickets to watch the Christmas Special of Surprise Surprise being recorded and along with Alice and my Mum we had a fab afternoon/evening and we won’t spoil the surprises but we can tell you we met Olly Murs and he was as charming as ever!

We hope the festive season finds you all as well as can be and look forward to telling you all about our Christmas next month.

For now we will say our thank you’s to Libby (she knows just how smiley she makes us), Glad, Leslie (the sunny cards are great especially in winter), Liza (we love breaking rules too), Becci, Jenny & Fox, Chrissie (she’s never had such sparkly nails), Lydia & Lyn (she thinks you’re a nutty nanna(!) but loves hearing about your family). We hope we haven’t missed anyone.

Faith and Alice have just signed up to do a Skydive to raise money for The CF Trust. Faith has been given permission by her consultant and we will share more news about this next year, but the date will be 17th May. Faith has been asking to do this since she was 6 but had to be 16 to be allowed to do it and she is so excited.

Much love and a merry Christmas to you all.

Update 31st October 2013

October has been a very tough month, Faith has been continually coughing and wheezing and was yet again given oral antibiotics just days after finishing her last course. This didn’t seem to help so at her CF Clinic it was a tough decision as to go in for IV’s or stay home on steroids and a new nebulised antibiotic. We opted for home, so Faith is now on between 3/5 nebs a day increasing if she needs help to cough up any ‘gunk’. As you can imagine this is very time consuming for us all and tiring for Faith, she missed a fair bit of school and did her best to get in for controlled assessments and science exams that count towards her GCSE’s. She also made sure she studied hard at home and this paid off as she has achieved a B grade in her English controlled assessment which is 40% of her final grade!! To say I am proud of her is an understatement.

All the treatments seem to be keeping IV’s at bay and although Faith isn’t back to normal yet she hasn’t gotten any worse so we plod on with all the combinations and hope things improve. This is so tiring and stops Faith being a ‘normal’ teenager going out with her friends as she sleeps so much and doesn’t have time between treatments right now, but her friends pop in to spend time with her and she loves that.

As we approached half term I made a spontaneous decision to take Faith away for a weekend break, and my Mum came along and took over all of Faith’s treatments so I had a complete break too. Thankfully, we seemed to miss the big storm and had a fun filled weekend – we played crazy golf, pool and bowling, and then chilled in the evening after eating out watching the X Factor (a huge favourite of Faith’s).

We are enjoying a calm half term trying to get some visits in to friends but our main focus is to rest and relax. We are ending our week with a slap up afternoon tea with Faith’s best friend.

As ever, your post has been very welcome and has kept Faith smiling at such a long period of being under the weather. Thanks go to Emily, Emily McCauley, Meghan Penrose, Lauren DeVoogd, Teresa Fearon, A Cheryl Cole fan, Lyn (aka Naughty Nanna), Becci Willets who spoilt us all with beautiful bracelets with our names on, Rissy & Harry for Faith’s Fairy with her name on, Donna Hilton, The Lawrence Family, Erin, Dee, Jenny Opwood & Natashja, who kept us all cosy watching TV with our popcorn and hot chocolate, and Kerry Mason for Faith’s beautiful handmade bracelet.

Faith loved getting Becci’s postcards from her cruise holiday. The Halloween treat bag and goodies were fab, Faith is having green glittery nails for Halloween and we made biscuits with Becci’s cookie cutters.

Also, an EXTRA special thanks to those who sent Alice birthday wishes – we had a lovely day celebrating with family and friends – and especially to Libby who knows just how naughty she was but how much Alice loved her treat ready for December.

A huge thank you for all our smiles and I hope to report a great improvement next month. Much love to you all and thank you for your support.

Update 4th October 2013

It has been a difficult month with Faith going back to school as that is always a shock to the system, then Faith needed more antibiotics as her chest hasn’t cleared up properly, and then out of the blue her knee got sore and swollen and she was seen by the doctor and told she had tendentious. She was on crutches as she couldn’t weight bear and lots of pain killers. This was at the same time as we were going to watch Chelsea play football, so it was a slow day getting her there and back, but a great day was had and a win which is always good. We have started a second course of antibiotics so fingers crossed the chest will clear and we won’t need another hospital admission.

Faith is working hard at school and is loving being in year 11. We have started to look round local 6th forms and colleges as she wants to study photography, so we’re tying to work out the best way forward.

We have a CF check up soon and will discuss a port further at that appointment as Faith is keen to have one to avoid the continual stabbing with needles.

Our thanks to Libby, Becci, Toni and Karen (she loves the bracelet and sparkly nail varnish, well whats not to love?), Kim and little Stevie’s water project was a huge hit and the bath bombs were very welcome (especially with her knee needing a good soak in the bath), Theresa, Emily McCauley, Glad – if I have missed anyone I apologise but with Alice having a birthday this week it’s been hectic. On that note, a huge thank you to everyone who still sent cards and good wishes as it really does mean so much. Alice has settled into 6th form and has had her first driving lesson, which went well and she is so excited about driving.

Thanks for the smiles, lots of love and our love to you all x x x

Update 3rd September 2013

So, we have had a turbulent two months. Firstly, Faith had a fab time away with school in July to the Battlefields visiting the trenches, with lovely sunshine and a host of fun activities. Little did she know she would be hearing the devastating news that her old friend Lizzie had passed away while she was there. I spoke to Faith on the Monday morning they were coming home and broke the news, and as expected I was greeted with heart breaking tears and sobs and a Faith who was unable to carry on the conversation. Her teachers did a fab job of comforting her as did her amazing friends and she was able to get through the last day and journey home, quietly but without having to find the news online as soon as she landed back in English waters. The school had also lost one of Faith’s teachers that weekend and she had just been told the news of her child development teacher passing the morning I spoke to her. She arrived home and with lots of tears we came home and talked for many hours about Lizzie, Lucy and Rachel. We have been friends with them for about 5 years and Faith made the brave decision to attend Lizzie’s funeral. So with heavy hearts we got our hotel booked and made the journey, a beautiful service was attended by so many and a sad farewell, but we did finally meet some friends from the CF community that we have known for many years.

School was finished at the end of July and summer started, a lovely evening meeting up with Rissy, Ruby and Harry, was great fun as they were staying just a few miles away in the camper van. We so nearly also made it a double whammy as Tony Forder was nearish but logistics meant we had to put it off with appointments and distance, but we do plan to try and meet up with as many of our Post Pals friends as possible.

Faith was very well to start the holidays and enjoyed a fun day at Thorpe Park with her Aunty and had lots planned for the remainder of the summer, but the sound of a cough put a hold on that, it came out of nowhere and all combinations of antibiotic didn’t help. So after 2 weeks of fighting we went to see the CF team and Faith eventually went in for 2 weeks of IV’s and we are still on them, hoping to finish Tuesday just in time to go back to school Thursday! We have had talks about getting a port fitted so fingers crossed we will have news on this soon. She also had her new shoe inserts fitted so hopefully her walking will be less painful.

During this time Alice came home from Spain and we collected her exam results – I’m delighted to share with you all she did brilliantly and achieved 7 x C, 1 x B, 1 x A and 1 x A* so she is off to 6th form to do A-Levels. As many who are friends with us on Facebook know, Alice has been very unwell, getting rushed to hospital via ambulance with suspected meningitis. This was then changed to a suspected bleed in her brain, and eventually put down to a virus, but she is still struggling so we are seeing doctors again to hopefully get some answers. I will keep you updated but would like to thank the people who sent Alice get well cards and congratulation cards, she was totally delighted to receive them.

So life has been a bit all over the place but hopefully we will be able to settle down to some normality now.

Thanks go to Glad Shrubshall, Tony and Eileen Forder, Becci Willets (especially for the beautiful flowers she sent me and the nail art book as it has kept Faith entertained for hours in hospital), Libby, Laura J, Harriet, Jen Mellor, Rissy, Harry, Ruby and Lola, Sarah G, Rebekah, Natashya, Denise C, Daire, The girl guide’s from Leicestershire, Vikki – your kind words after Lizzie’s passing were so helpful to Faith, Loren C – the amazing cake card was fab, Kerry Mason, Dee, Jasmin Minshull, Karen and Toni, and Kim.

As ever, sorry if I missed anyone, thank you for the smiles and here’s to better news next month. Keep smiling.

Update 13th July 2013

June has been a mixed month with Faith, hayfever set in and she was fairly ok to start with but it slowly caught up and she has sneezed her days away. Chest wise she has been ok, but her joints have caused some major problems again (her hips being the main culprit).

We have enjoyed celebrating Faith’s step dad’s birthday and Father’s Day a week apart, Faith loves birthdays and made some yummy cakes. We also had a lovely christening with a very close family friends daughter followed by a BBQ.

We had an extra special treat as I was shopping in our local supermarket and some ice skaters from Dancing on Ice came in and Alice and I won some free tickets to the ice show. We can’t tell you how exciting the show was, especially as it was sprung on us. Alice gave Faith her ticket as she knows how much Faith loves the Ice Show, but it was a lovely evening and we had great fun.

We also had a lovely week at Center Parcs at the end of the month in Suffolk – sunshine all week and quality time as a family, all 5 of us. The children enjoyed riding the bikes everywhere and my partner & I enjoyed getting the odd 10 minutes to just sit and relax and watch the teenagers become children again having a carefree time. The highlight had to be our spa day, the boys went to play golf and I introduced the girls to relaxing in style. Faith kept asking what do you do for 3 hours and will now admit she was very apprehensive, but loved it and couldn’t believe the time flew by so fast and is now looking forward to many more!! It was booked to coincide with the end of Alice’s exams and we are so glad they are all done and she is now enjoying a long break in Spain with friends, so Faith and I are having some lovely time alone together at home.

I am a keen tennis fan so Faith sat with me to watch history be made when Andy Murray won his first Wimbledon, but she isn’t totally converted (yet).

Faith is delighted her football team have the old Manager back and is very excited to see Jose at The Bridge this upcoming season Also, our local team, Bournemouth, are looking forward to exciting times ahead in the championship, and are hosting Real Madrid in a friendly match. As a loving (or maybe mad mother) I stood in line with my sister and about 999 other people to get the hottest tickets in town, and on 21st July I will be sat in the East stand with Faith and my nephew. To say they are excited is a major understatement.

As I type this Faith is away with school on the battlefields trip with History, she was so looking forward to it, and I hope she gains some insight to the bravery of our past, it will move her I have no doubt of that, and I am just enjoying a rare time of both girls being away at the same time, but I am staying at my partners so I still have my stepson for teenage company.

I thank everyone for the lovely cards and letters and the gifts Faith has been sent, as I am not at home I do not have my list with me but a huge thank you to Tony and Ei for her Chelsea DVD, to Glad for everything she does for us, the Lawrence family for the lovely ‘making your mark’ project (Faith is looking forward to making the teddy and using it for story telling over the years with Willow, she decided it will be their special thing), to Libby as ever, and to everyone who took time to think of Faith and us this month.

On a personal note, thank you to everyone who wished me well as I had a hospital stay after surgery. It means a lot that you take time to think of me.

We wish you a sunny and safe month and love to you all x x x x x x x

Update 31st May 2013

Well the joys of April were very short lived and boy did May bring us back down to earth. Faith started feeling off colour at the start of the month and we soon discovered she had a bowl blockage, a fairly common CF problem and we can usually shift this at home, so it wasn’t ringing any alarm bells to me, but as the next few days went by it was obvious that although the blockage had passed, Faith was getting very unwell. She couldn’t eat, slept all the time and had a very high temp, dosed up on painkillers and nothing was bringing it down. So after a couple of phone calls to and from the hospital it was decided she needed to be seen, and results were she had pleurisy and a UTI, so a 2 week course of oral antibiotics and home we came, very relieved as Alice had her prom 2 days later and Faith was desperate to see her sister all dressed up.

Prom was fab and Alice looked AMAZING. The lovely Dawn Smith came in her beautiful Morris Minor, Millie, all decked out with ribbons and bows and drove Alice off in style. We have sent a separate write up for the evening to Post Pals.

Anyway the antibiotics were working their magic and Faith went back to school, only to start feeling very achy in her joints. Two days later she stood up and fell straight back down onto the sofa unable to weight bear on her hips, so more painkillers and after a very restless night we were back in A&E being seen very quickly, having blood tests and x-rays to find no explanation about all the pain, so home we came armed with stronger pain killers and crutches and told to go back if it got worse, but a fast track referral was made to be seen by peads. As the week went on the pain has got bearable and Faith is able to walk unaided but it’s still sore so we are just waiting for the referral.

Obviously this stopped most of our half term plans as we couldn’t go far, so we drove up to Portsmouth, to spend some time with my partner, just a small issue of a tyre blowing out on the M27 to delay us and we had some lovely restful days. We did however manage to go to Milton Keynes and the kids all went indoor skydiving, such an amazing experience for them and they loved every minute floating inside a dome and then at the end the instructor took them high flying where he held them and flew them to the top of the dome and down again at speed. We did however enjoy watching Chelsea win the European cup, and Faith was delighted with the news that Frank Lampard is staying for another year (as was mum).

As ever, your cards and gifts have been very gratefully received and Faith has become a dab hand at nail art, as she was able to practice while sat on the sofa, so a huge thank you to Sean Preece for that. Perfect timing.

We hope we have happier news next month and thank you all for your love and support as ever. Much love and keep smiling x x x

Update 30th April 2013

Well, we have had a very busy fun filled month, but most importantly and best of all, a really healthy month for Faith. We enjoyed a fun Easter with some time both with my family and the ‘in-laws’ and your cards brightened up our room where the weather failed, and after braving the cold we had a lovely couple of weeks off school with lazy days and simple family time.

Faith and I were lucky enough to go to watch Chelsea V Man United at Stamford Bridge in the holidays and a fab day was had by us both. In a bizarre turn of events we then met up with Alice in Covent Garden as she was going to a concert with a friend in London that evening, so it was lovely for the girls and I got some adult conversation with my friend.

We also decided it was time to tackle the back garden as it was very neglected last year due to a bad summer and Faith being unwell, so we now have a lovely tidy garden, with a clean jet washed patio and our sunbeds and hammock all ready for some lazy evenings.

Faith also saw a hand specialist who has designed some straps for her wrists so they are less painful at school and is working out a program to strengthen them.

April is also our birthday month as we seem to celebrate a birthday nearly every day, and after sharing lots of cake with everyone else it was finally Faith’s 15th birthday, which I am delighted to say she loved from start to finish. I have to say this birthday is probably the best she has ever had health wise and it was lovely to see her able to enjoy the day, beam with pleasure as she opened presents, and generally have a fun day. She was spoilt at school and we went out for a big dinner, taking her best friend with her along with my parents. She continued the celebrations into the weekend and then we had a weekend in London which involved seeing Beyonce in concert at the O2. The London Eye was amazing as the sky was almost cloudless, so we got to see lots of sights from all the different angles, then we went for a bit of lunch whilst we watched the busy London life fly by. Then we went on a London Duck tour which is a fab way to see the sights, it consists of going on an amphibious vehicle along the roads around the city of Westminster and then SPLASHDOWN, as the duck takes to water and sails along the Thames. Then we headed to Greenwich and went on the Skyline, seeing the sights at sky level. Then it was show time and in Faith’s words, Beyonce was amazing. We sang and danced along for the full 2 hours with sit downs at dress changes of which she had 12!!! We were all exhausted and both girls slept all the way home, so a very tired but happy household. To see the smile on Faith was priceless and Alice had her dreams come true.

Now for the all important thank-you’s. As ever, thank you to Libby (our house literally smells LUSH), Glad Shrubshall (too much to mention but to say she spoils us all is a huge understatement), Tony & Ei Forder (the Big Bang Theory T-shirt for her birthday was a huge hit), Michael & Maria, Natashja (we love hearing about Jasmine’s adventures), Sarah G, Becci Willets (lovely nail varnishes and sorry for giving the credit to the wrong person for her charms), Jenni, Jenny O, Bev, Kath Ronja Milla and Laura, and a huge thank you to Laura Mckeown for the amazing cake book – we simply cannot wait to get making.

To say it’s been a lovely month is an understatement and we have made the very best of Faith being well as we are very aware that this good spell can be short lived. To see her walking the dog in the lovely sunshine in the early evenings though is a sight to lighten many hearts, and I cannot thank you all enough for helping her get through the tough times and keep her smiles and spirits up, they are always very much appreciated.

We are looking forward to May as Alice gets to go to Prom, and Post Pals have given us a chance to help make it super special as the lovely Dawn Smith has offered to drive her in her beautiful Morris Minor. We only know Dawn through Post Pals so it’s amazing that we have made some amazing friends. Alice also starts her GCSE’s on May 10th and they continue through until 17th June, so I’m sure you will all keep her in your thoughts (and Faith and I) as she is very apprehensive and is doing her best to get through. We are very proud of the hard work she is putting in preparing for them.

Well, let’s hope the sunshine continues and good health stays with Faith, and as ever, may you all be blessed with smiles and the knowledge you do make a difference.

Update 30th March 2013

Well, March started with a trip to the foot doctor. Faith had casts taken of her feet so that she can get mounds and custom made inserts/splints for her feet to help ease the pain when she is walking. She found this very amusing as she had to hang her feet off the bed and couldn’t stop laughing whilst the plaster was shaped as it tickled so much. We should get the final product next month.

Faith also completed her work experience, which she loved, but was totally worn out with. She was told she was a delight to have and they would miss her happy smiles.

Faith continued to cough at the start of the month and was given more oral antibiotics.

We had a lovely weekend celebrating Mothers Day, followed by my birthday the next day. The girls enjoyed bringing me teacakes and tea in bed, and kept me with a full hot cup of tea all day – again, it was lovely to be remembered by many myself, and I can honestly say it did bring a HUGE smile to my face when I saw my name when the post was collected.

Faith had her very overdue ingrown toenails removed mid month, 2 toes 3 nails, so she was hobbling about and stuck on the sofa for a week. Although the procedure was very painful she dealt with it very well and is already feeling the effects of less pain when walking, so fingers crossed that as they heal completely they will make a huge difference.

Faith enjoyed her few days back at school before finishing for the Easter break, and has been very busy baking with her special Easter cup cake set she received, and they are looking great.

As ever, thank you all for the lovely post and especially to Natashja for the lovely bracelet and to Laura for the additional charm for the bracelet she received while in hospital – she is loving getting charms and always gets compliments when she wears it. We also want to thank Dawn Smith for the lovely Easter bags and to all for the Easter wishes and the chocolates and socks from Glad Shrubshall. Also to Michael & Maria for the Easter card.

We hope that Chelsea have a good result for our trip to the Bridge on bank holiday Monday, as this will be the last trip this season no doubt.

As ever, thank you for the smiles and we hope you all have a good month.

Update 7th March 2013

Well what a month we have had. As you know, Faith went into hospital at the end of January, on the day her cousins baby was due, and she was most upset that she might miss the new baby cuddles. Part of the deal she struck with her consultant was that she could go out to meet the baby when she arrived.

So Faith was on her usual IV antibiotics and resting well, in fact as each day went on she was sleeping more and more and it was apparent to all she was rapidly getting worse not better. She was delighted with the steady stream of cards and letters that came her way and they really did make her smile. Although she was feeling grotty, she was delighted to wake up to a photo on her phone of a new baby girl called Willow on the 6th February. She was all ready for going to see the baby the next day, but spiked a temp into the 40’s and was coughing so much she couldn’t eat and was clearly very unwell. It was decided she might have to postpone the visit, and the next morning as soon as her drugs had been put through her line, she had a huge allergic reaction and was covered head to toe in a very angry rash. She was obviously very scared and uncomfortable, but after some strong antihistamines she slept for most the day.

She continued to be very unwell for the next few days and eventually turned a corner on the Sunday night. Her antibiotics had to be changed and it was decided she would have to stay longer than the 2 weeks planned.

On the 11th February it was Grandma’s birthday and Faith was allowed to pop to see her for a cup of tea and she was delighted to meet Willow there and had a lovely cuddle – such a simple thing but it definitely made a huge difference. As the week progressed Faith got a bit better, and although she was still growing nasty bugs she was less tired and wanted to be home more than anything. So after 19 days we finally came home, and with lots more rest and chilling out she started to have some Faithy sparkle back. This admission was very hard as I was unwell myself suffering a very unpleasant kidney infection, so home was a very welcome sight.

Faith was able to then enjoy the first of a few concerts she had tickets for and off she went on Saturday night to see Little Mix at our local concert hall. She had a fab time and although she took several days to recover, she loved it. We had a very quiet half term, with Faith going to her grandparents for 2 days while I took Alice out Prom shopping. I’ll keep you updated on that in May. On the last day of half term Faith went off to her best friends for the night giving me some much needed rest, and she went off to London to see her favorite boy band One Direction at the O2 arena. I had several calls through the night, so I feel I lived the experience with her. She had the best time ever (her words) and after getting home at 2.30am(!!) she slept most of the following day.

The last week of February saw Faith start a 2 week work placement for school’s work experience and she is loving it. It is hard work and she is shattered at the end of the day but she is getting on and is lucky she only has to do 4 days. She is at our local hairdressers, a 2 minute walk, and I’m not sure how but she seems to get her hair styled most days.

So where do I start with our thank you’s this month? The list is long and I hope no-one has been missed off. First I would like to say thank you for the girls valentines cards as both Faith and Alice got a mystery card… Faith said maybe they were from Olly Murs but I have a sneaky suspicion they were from Dawn Smith. A special thank you to Libby, Viks, Sarah G (it was lovely to hear from you again), Karen (sami), Becci for the lovely letters and post cards, Dawn Smith, Jane, Becci Willets, Kaily O’Brien, Tony & Eileen Forder, Charlie, Karen, Kerry Mason, Jenny Opwood, Glad Shrubshall, Cath Booth, Harry and Lola and Jenny for all your lovely cards, many hand made or with her name and Faith loved them all. Her wall was covered. She loved her pamper gifts as well and was blown away with her ‘Faith is amazing’ chocolate. She has kept the wrapper, and her sparkly duck lip balm was admired by all the staff on the ward.

It has been a while since Faith had to be admitted to hospital and this one had some very scary moments, but your continued support was amazing and being made a featured Pal made Faith feel very honored. It made her hospital stay so much more bearable.

A special thank you to everyone who included Alice in February as, although she has moved on, she loved the fact that with Faith in hospital so many continued to think of her. She has just taken her Mock exams so is now busy revising for the real thing in May/June. As mentioned before, she is also busy preparing for prom and I will be sure to keep you all updated on that. I can however reveal she has the prettiest dress ever and the sparkliest shoes any girl could wish for.

As ever, we hope you are all well, and keep smiling. Keep safe and thank you.

Update 29th January 2013

January has been a tough month on Faith, she had her annual review and although they are happy she is plodding along they would have liked to have seen her bounced back from her chest infection sooner. Faith has continued on a part-time school timetable due to the fire, but she has still been very tired and coughs continually.

Yesterday she was finally taken into hospital for a 2 week course of IV’s as she is rock bottom and her body is not coping so well. She needs total rest and time to recover. Her liver results are looking OK, and again hopefully with time and rest this should improve. She will most definitely need an iron infusion during this stay as she remains very anemic. She could most definitely do with some extra TLC this month, and I have no doubt Post Pals will be the ones to bring a smile to her face.

Thank you for the lovely letter and cards that have been sent during January, it’s always lovely after the rushing about after Christmas. I will give a better update when I have better internet access and some more time. But for now, if you can take my thanks and I will wish you all well. Keep smiling.

Update 7th January 2013

Well, December was definitely anything but quiet. As mentioned before, Faith continued to struggle with the cough, bad back, and sickness, and although she managed to stay home for Christmas she was very tired and sleepy. We started the month with antibiotics and Faith missed a fair amount of school with her back and this has continued to give her pain, and although she went to stay with her aunt for the first weekend while I went to a long booked concert, she didn’t get out much and just pottered about, her cough continued and we had the devastating news about her liver and we await a scan on 21st January for the all important look about. We also had a podiatrist appointment the week before Christmas and it has been decided that Faith can have custom made foot supports to help her walking/pain management and also that she will need 3 more toenails removed due to ingrowing nails. This was a nice bit of good news during a tough time.

She became very unwell with her chest and had some very strong antibiotics and these left her very sleepy, but we did go to Portsmouth and had an early Christmas celebration with my partners family and although she struggled to stay awake for the whole evening she did enjoy her Chinese and had fun. We then came home to get ready for the big day.

Christmas day was lovely but quiet, we spent it with all our family and went to the local pub for a cooked lunch so nobody had the stress of cooking dinner, and a great day was had by all. We also had a trip to the cinema over Christmas and enjoyed a feel good film, Pitch Perfect. We had a very lazy day on Boxing Day and came back home to our own house that evening. An early night was in order for us all and we all looked forward to a long awaited lie-in, but at 6.30 AM our house was rocked by a huge lightening bolt, and woke everyone up, and sadly we soon discovered that the girls beautiful school had been hit by the bolt and was sadly burning down. I know many people have seen the reports about it on the TV and it was devastating. Sadly it appears that Alice has lost all her written work for her drama GCSE and her last exam performance, so we now have to wait for the exam board to decide how the grading will work out. Both girls were very upset about the fire, and it soon became clear that Faith will have a reduced timetable – having to do work at home via the VLE, which can work to her advantage as it means she can work at her pace from home.

We then went to Portsmouth for the New Year celebrations and had a lovely family night with our ‘in-laws’ and although Faith was mostly on the sofa she did enjoy playing with the younger children and came outside to sing in the new year, and we did manage a couple of trips to the sale – leaving it until late afternoon meant we missed the crowds and grabbed some bargains as well.

The return to school has been delayed due to the school being unsafe but as I type we are told the children will return on Wednesday and Faith will get days off on a rota basis while they try to get temporary classrooms on site.

Faith has her annual review tomorrow (8th January) and then as mentioned her scan on the 21st, so I hope to be able to update you all on the outcome next time when we have a bigger picture.

On a brighter note, we can’t thank you all enough for the gifts and cards we received over Christmas, and have enjoyed using them all, and still feel overwhelmed that people think about us all throughout the year. A huge thank you for all our lovely Christmas cards, but especially to Tony & Eileen Forder for the lovely photo card and to Kerry for Faith’s Christmas card with her name on it. Massive thank you’s for the lovely gifts we ALL received for Christmas, especially to the families who still sent to Alice and also to me which was an unexpected treat – Tony & Eileen Forder, Glad Shrubshall, Dawn Smith, Ellie Knott, Penny Berrill, Libby, Jenny, Tek, Viks, Laura, Kerry and a special thank you to Rikki Ross Esty & Iian for treating us all (the chocolates went down a treat).

We wish you all a very Happy New Year and hope it is peaceful, healthy and see your hopes and dreams come true. With much love until next time… keep smiling.

Update 18th December 2012

We went to see the consultant today expecting an additional antibiotic and told to be seen in Jan for MOT… but she’s hanging on by fingernails not to be admitted and if she does she will be in over the festive period. Her Doctor listened to her chest and said she would normally think that’s not too bad, but knowing how many anti-bugs she has had, it’s rubbish! Her blood results show she is severely anemic and her liver is not functioning at all well and they are very concerned about it, so we’re going for a liver scan as soon as possible and they’ll retest the blood to get a full picture. She also has a cracked rib and they now think she has lost too much weight, even though we have followed the dietitians advice (she put a bit on due to medication and steroids) and she is now on a BIG dose of steroids and has more antibiotics to start as soon as this course has finished, unless she gets any worse and has to go in. She is also not allowed to go back to school and Faith got upset about this. All in all, a bit of a shock, and not at all what we wanted to hear or were expecting, but we will fight and kick it’s butt!

Update 2nd December 2012

Faith has had a tough month, she was taking part in PE at school and turned badly and rupture her knee causing a week of swelling and pain, and just as we got that sorted, she was struck down with a very bad muscle spasm in her back. We had just been celebrating a friends little boys birthday when Faith had shooting pains in her back, resulting in her being unable to move, so after a great deal of wiggling we got into the house and after a big dose of painkillers she went to bed. By the following day every time Faith moved she was being sick, and after a visit to the doctors she was put on super strength painkillers but her sickness still continued and she was becoming dehydrated. Nothing helped her pain and eventually we ended up in A&E and got some different meds.Finally, after a week, she was back on her feet and (all be it slowly) she is now mobile and moving again.

She has been enjoying watching The X Factor and we are planning an X Factor Final get together with food and drinks with some friends.

We are planning the ‘putting up of the tree’ for the 4th December and the household is getting ready and excited to spend a happy family Christmas with our close family and New Year with my partner and his family.

We wish you all a very Happy Christmas and New Year. We cannot thank you all enough for all the smiles we have received this year and hope you all find time to enjoy the festive season. A special thanks to Glad and Libby for post, also Sarah, Natashja and Fiona for the post we get regularly. With thanks for the continued smiles and wishing you all a Merry Christmas from the 3 of us.

Update 24th November 2012

I just thought I would let you know Faith is not having a great time right now. She has a nasty sickness bug and her back has gone into a huge spasm. Due to the sickness it has gone from a small section on the left side to the whole of her lower back and is traveling upwards. She is in a lot of pain all the time and is on very strong meds which are not helping the sickness, which in turn causes more pain. We are also not sure how much pain relief is staying inside her. She is very sleepy as she can’t get comfy and can only sleep for short spells, so it’s a vicious circle. We are hoping this is not going to end up with a hospital admission, but she is becoming dehydrated and we are fighting a losing battle to get fluids in her.

Update 9th November 2012

October has been an odd month. First we would like to thank everyone for Alice’s birthday post and gifts. She had a great day and was very spoilt.

Faith has had a cough continually off and on and has had some very poorly days. She has had 4 weeks of antibiotics with the last course causing a very nasty reaction with her lips swelling and needed lots of antihistamine to reverse the swelling. She was then put back on lower meds and things are settled now although she does continue to cough.

We had a lovely long weekend break at Butlins for half term and this gave everyone a much needed break and time to recharge our batteries. The highlight of the week was meeting the lovely Olly Murs at his book signing. He had a good chat with the girls and we all had kisses from him. So lots of happy ladies went off to lunch and the day was ended in Portsmouth to see an amazing fireworks display set to music.

As ever, the post has bought smiles all round and a special thanks to Becci and Natasha, it was lovely to hear about Cornwall. Keep smiling and hope you are all making happy plans for Christmas.

As Alice is now 16, Post Pals post will be now be directly more towards Faith, but she has loved getting mail and appreciated every single piece. We’d like to say a very BIG thank you to everyone who has taken time to think of Alice. She has said it makes the tough times very much easier knowing complete

strangers are thinking of her and sharing their love with her. She has made some lovely friends on PP and will enjoy staying in touch with them.

Update 16th October 2012

We have had a steady return to school with Faith starting her GCSE’s this term and that has been great fun. It’s hard work but she’s loving it.

Alice would like to thank everyone for her cards and gifts for her birthday which was celebrated in style and a fab time was had by all.

Faith has now finally received some insoles for her shoes so that is helping with her walking and keeping her feet in an upright position. She also had her check up at CF Clinic and although she had a very nasty cough they were generally pleased with the level of fitness she is able to do and are very pleased she has started a weekly bike ride with her Granddad. Test results showed Faith had grown some nasty bugs so as she was already on antibiotics as a precaution she stayed on them. After the 2 weeks were up things looked good, but unfortunately 4 days after they finished she was knocked for six with another chest infection along with a very nasty ear infection and throat infection. She is now on very strong tablets and trying hard to avoid a stay in hospital, as we are due to go to Butlins for a long weekend at half term. She is very much looking forward to meeting Olly Murs at a book signing at our local Waterstones. They have gone out of their way to make it happen so as you can imagine I have 2 very excited girls (and mummy) – hopefully we will have better news next month but for now thank you so much for each and every smile – the girls really do appreciate them.

Update 11th September 2012

Well since our last update Faith has managed to break her thumb, resulting in a nice purple cast from her elbow to her finger tips on the first day of the summer holidays!!

Summer has been a whirlwind of trips and days out. Firstly the girls spent a few days seeing their Dad so I had a much appreciated break and we then had a lovely day in London with their Auntie and cousin for a girls day out and we went to the V&A museum taking in the ballgown display which was breathtaking. It was after the Olympics had started and we were very worried it would be so busy but to our surprise it was lovely and quiet, so in the afternoon we stopped off for a cake and coffee in Covent Garden and then had a lovely few hours watching the street entertainers. We then went for Pizza and made our way for the highlight and went to The Cambridge Theater and watched Matilda The Musical – one word from all was FAB. It was back home for a few lazy days walking the dog along the beach when we could drag ourselves away from the Olympics, and then the time as a family we had been waiting 7 years for came – we went to the Olympics!!! Faith’s doctor had recommended her to a charity called Dreams Come True and Faith’s dream was to go to the Olympics in London. We were on a train to London at 8.30am and after a couple of hours we arrived in the city and took in some sightseeing and a return to Covent Garden Market to get the girls some t-shirts for Team GB – we checked in to our hotel and made our way to Earls Court to see the quarterfinals of the men’s Volleyball, WOW it was everything we hoped for and more – exciting, fun, buzzing, loud and everywhere you looked there were happy smiling faces. It was a late finish and we traveled back to get some much needed sleep as we had a very early start as we had to be at the Stadium at 9am the next day! So after what seemed like no time at all we were eating a breakfast and made our way to Olympic Park. We had arranged to meet Gaynor (the lady who organised Faith’s LoveQuiltUK) who was a volunteer at the games – she gave us a quick tour of the park and we made our way into the stadium, it was magical and exciting. The noise was huge and we thought it couldn’t get any louder. We were wrong – TEAM GB came out and the cheer was out of this world. After a long day we went to the shop and got a few souvenirs and made our way back into London on The Javelin. We had a bite to eat and finally got back home at 10pm, tired but happy and when asked was it worth it both girls said YES without any doubt.

So a few more days rest and more sitting on the sofa watching the games come to a close and we went to get Faith’s broken thumb looked at and we were delighted when they said the cast could come off. So we went to Portsmouth to stay with my partner and a day at the Romsey Rapids was great fun and tired everyone out. The highlight of the week was going to Gun Wharf for a coffee with a very special lady – we went and met Glad who sends post to us and how lovely it was to introduce the girls to her and share some stories from the summer. We also fitted a trip to Chessington in and that was great fun.

We then all came home to Poole and had a few days ‘being on holiday at home’ and had a great time going to the beach and eating icecreams, having fish & chips at the seaside and generally enjoying our home town and surrounding areas.

We then spent our last full week in Blackpool having a good old fashioned fun holiday, we were going to be very busy and went to The Pleasure Beach, Madame Tussuards, shopping and The Tower – we even met the sugar-dandies from BGT at the tower. We went to Liverpool for a day and took a trip round Anfield looking at the stadium, and felt very humbled when we saw the Hillsborough Memorial. All in all it was a great summer and best of all no illnesses – obviously Faith’s joints took a bashing on holiday but as we mixed busy days with quiet days she was able to recover well and it seems to have worked as apart from being very tired and achy there was no serious backlash from it all.

Finally home and Faith and Alice had a few days longer off school than me so they spent a few days pottering at Grandma and Grandad’s house while I went back to work. The girls returned to school and Faith went in the new uniform and looked very smart.

So all in all a great summer of being busy and well and it was so different to last year where Faith was unwell and in and out of hospital. Faith has also received her new custom made inserts for her feet so hopefully walking will get a whole lot easier now.

Well, onto post we received and a HUGE thank you for all the lovely Olympic postcards, it has been lovely seeing how excited the girls got with different pictures and knowing we would be going. I did have a list of gifts and people but my PC crashed and lost the list, so I will say every single item of post has been greatly received and enjoyed and we say thank you very much to you all. A special thank you to Tony and Eileen though for Faith’s Chelsea DVD and also to Glad for the lovely Olympic gifts.

Keep smiling and thank you for making my lovely girls smile.

Update 19th June 2012

Well it’s been a while since I did an update so here goes… April saw Faith have a return of the dreaded arthritis – she had 2 big flare ups, but thankfully although they were both very painful and made life uncomfortable, they were both short lived. Faith has been working very hard with physio to keep her fitness up to top notch and it seems to be working. She also has had a couple of niggly chest infections but working hard with her nebuliser has kept the infections at bay and we have so far avoided hospital – Faith hasn’t been admitted since October!! We are hoping to keep this run going.

April also saw Easter and both girls were totally spoilt and we thank you all for you lovely gifts and cards and of course the mountain of chocolate they received and slowly ate throughout the following weeks. We also saw the birthdays arrive and we had a whirlwind of celebrations – Faith’s Grandad, cousins, my partners son, and Mum, all had birthdays and then finally it was Faiths. She was totally spoilt and loved every minute of her day and as ever Post Pals spoilt her rotten – I can’t thank you enough.

It seems a long time ago that my 14 year old was a tiny little bundle and at times I didn’t think she would still be here, so birthdays are always a bit extra special for her. This years treat was to go hydro zorbing and boy, did she have fun! It’s a big ball and they throw in a bucket of warm water and roll you down a hill – Faith and her best buddy had a fabulous time and looked like drowned rats when they came out.

May was a mixed month and we had a few scares with her chest again but with hard work we kept out of hospital and when the sun shined we loved it and made the most of it. Faith enjoyed spending her birthday money and did lots of clothes shopping – it’s funny how careful they are with their own money!

We had the pleasure of watching Alice preform on stage at the start of the month and WOW what a show and what a star she was. Faith and I helped out behind the scenes and we had a great time helping all the little ones change clothes and make sure they kept calm. Faith was very touched when she was called up on the last night to be given a gift for helping out. We also had a lovely day out in Brighton to watch/look at the Mini’s who had taken part in the London 2 Brighton mini run, what a fun day that was and lots of fun on the pier too.

May also saw a family wedding and it was lovely to all get dressed up and celebrate with everyone. The following day while Alice went to an after wedding BBQ, Faith and I went to the final game of the football season to see our beloved Chelsea and wish them well in the upcoming Champions League Match. A great day was had and we said a very sad farewell to one of Faith’s favourites, Didier Drogba, who confirmed later in the month he would be leaving. We then spent a tense week waiting for THE FINAL. We went up to Portsmouth to spend the weekend with my partner and after a nail-biting 90 minutes and even more tense 30 minutes extra time it was with a heavy heart we watched the PENALTIES. Faith, as ever, was confident and I do believe the whole of Portsmouth heard the cheers when we won. We won’t lie, we had tears of joy, but what a moment to watch her hero Frank Lampard lead the team out and win the game with Drogba kicking an amazing final ball for his Chelsea career. Needless to say, Faith was pretty worn out after that and it took its toll during the following days and she was totally run down, worn out and off colour. Again, she needed more antibiotics as it was another chest infection but she stayed home and bounced back very well.

June bought the long awaited Jubilee and Alice spent most of it revising for the first part of her GCSE exams. Faith, myself, my partner and his son, were treated to a day at Wembley to watch England play their friendly game before departing for The Euro’s. We had a fab day and were pleased with the win and then went back to Portsmouth to enjoy some more Jubilee fun. We then had my niece’s wedding and Faith and Alice both loved getting the glad rags on and partied hard all day. We chilled for the rest of the half term making sure both girls didn’t become unwell with the pressure of studying and partying. So I am happy to report Faith is still doing well and although she keeps getting little flare ups we haven’t had a major one in her joints for a while and we seem to be keeping her chest infections under control and still remain out of hospital and able to enjoy the Euro’s.

Life hasn’t been so kind to Alice who has studied hard and been doing really well at school, as she has sadly been diagnosed with polycystic ovaries which has come as a shock. She is being very grown up about it and although she is needing lots of cuddles she is still studying hard and trying to not let it upset her too much. So it’s a few trips to the hospital and doctors to get some things clear and then we can start on some hormone treatment to make her more comfortable, and we are very optimistic about it.

All that remains for me to say is some thank you’s and as ever if I have missed you out I can only apologise. A huge thank you for the girls lovely ‘Girls night in Box’ which contained such lovely treats to have while they watched the DVD’s but it did not have a name card with it so from the bottom of my heart I thank you – they loved it and it happens to have one of Faith favourite films in the box set ’50 first dates’. As ever, thank you to Tony and Eileen (Faith loves the DVD and is going to wear it out I’m sure!), Libby (too many to mention but the handbag is a huge hit), Glad (where do I start -you spoil us ALL so much, thank you), Becci Willets (we loved hearing about your holiday and are going to try and get to Cheddar ourselves soon), Dawn Smith (the bracelets are a huge hit and everyone loves them), Helen, Rissy, Mary & lola, Hannah Turner, Claire, Satcey, Sophie, Dottie (your adventures keep both girls smiling), and of course Post Pals themselves who continue to keep everyone smiling through good times and bad. Faith and Alice were very spoilt over Easter and enjoyed the lovely gifts and cards and not to mention the huge mountain of chocolate that they slowly ate over the following weeks. Faith was also extremely spoilt for her birthday and now has lots of lovely cake making/decorating books to help with her cupcakes and she is loving trying out new ideas – thank you so very much one and all. We can not thank you enough for continuing to send so many happy smiles to both the girls and in turn myself. The post most definitely keeps their spirits up and they appreciate every letter, card or gift they receive.May you all find some sunshine to enjoy over the next few weeks and we will catch up next month.

Update 8th April 2012

March has been a mixed month for us. Faith has had a return of her arthritis with a big flare up in her joints and also suffered a very nasty sickness bug that wiped out a whole week!! Her chest however has been ok and after a very slight infection her chest has cleared nicely, mainly with the aid of her nebs and at clinic her lung function had gone from 78% at very best to an impressive 95% so fingers crossed we can keep this up.

This month saw Alice go on holiday with friends for a few days for a well deserved break at Center Parcs in Longleat, giving Faith and Mummy some lovely quality time together.

A huge thank you for the girls books – both were delighted to receive them.

Days out this month have been few and far between but Faith was treated to an amazing night at Chelsea Football Club to see them play Benfica in the second leg – it was a nail biter and we were 3-1 down at the start and the game was end to end drama. After a show of talents and after extra time Chelsea went through to the quarter finals (and have since gone on to the semi’s). We were privileged to park in the players car park and after the game Faith met several players including Ashley Cole and Fernando Torres. It was a chilly evening but the lovely fleece blanket Tony and Eileen Forder sent Faith kept her snug and warm.

Our thanks go to everyone for post this month, especially Tony and Eileen, Glad, Libby, also Sarah, Becci, Kerry, Fiaona, Claire, Stacey, Hannah and Rissy & Mary.

As this is a little late we will thank you for the overwhelming amount of Easter goodies the girls received and they were truly spoiled. We have enjoyed the Easter holidays so far but have another week to chill, so hopefully the good health will continue.

Faith did take delivery of her super dooper new bed this week and it is an electronic bed that can raise the feet up to help with pain/swelling. It can also be put in a sitting position, which is great when she needs to chill out, but it helps no end when she is very stiff in the mornings and can raise herself up without waiting for me to help her up. It gives her so much more independence in the mornings as she can sit up, wriggle about, and get out of bed on her worst days without any help form me.

March also saw me (mum) celebrate yet another birthday and I have to thank the PP friends who made my day special with messages and cards too. The same as well for Mother’s Day – I can honestly say it was a lovely surprise to have post and I know now how special it makes the children feel so a huge thank you (especially to Glad).

March brought the sunshine and it has been lovely to walk the dog along the beach and see her run fast while we have walked at a leisurely pace. Fingers crossed the good weather continues.

Thank you for keeping the girls smiling and see you all next month.

Update 27th March 2012

Faith is having a rough time right now, she’s feeling very unwell with a nasty sickness bug that won’t leave and she has a lot of tummy pain as a result. She has possibly cracked a rib as she has had a bad cough over the weekend and her arthritis has come back and she is having a major flare up – we hoped it would be a minor one but it looks like it’s going to be a full blown relapse.

Update 1st March 2012

This month has flown by, the snow was just a dusting and both girls were disappointed in our small snow fall. We had a fun filled half term with the highlight being a concert to see Olly Murs for all 3 of us at our local arena. We all had a great time and the lack of voice the following day was a result of a good night had by all. Some shopping was also on the cards and we had a lovely trip to Portsmouth to see my other half and Gunwharf Quays is always a big hit.

Faith was able to send a smile to one of her regular pals this month (an adult) as he had a birthday and she was delighted that he was made to smile and how much happiness it bought him.

Health wise we have had a very good month, a chest infection has been kept at bay we hope with the introduction of a nebuliser to be administered 2 times a day along with her physio Faith isn’t keen but it helps loads and she gets on with it.

Faith has finally had her long awaited toe surgery to remove her nail that had become very badly infected and ingrown. This was very painful for her and hasn’t helped with her walking – added with the distortion of her foot with arthritis, it had to come out. I’m pleased to report she was very brave and the toe is now fully sorted and over the next few months the bed will heal and the dressings can come off. Right now she looks like she has a boxing glove on her toe though, so she is in flip-flops – thank goodness for the warmer days. This has left her exhausted and the pain has been a lot more than she anticipated (Faith thinks everything will be just a bit sore) and she has been snoozing all day. This has had a knock on effect to her chest and she is showing signs of an infection, but the antibiotics are already on board and fingers crossed this will sort itself without a hospital admission.

Thanks this month to Fiona, Becci, Glad, Kerry and Sarah for their cards. It is always lovely to read letters from pals to hear about what they have been up to and the girls love hearing from everyone, but our regulars especially, as they can’t wait to hear how they have got on with gardening or shopping or a special treat they have been looking forward to. Thank you for the girls’ monthly project – they have both enjoyed being fashion designers. A massive warm thank you to Tony and Eileen for Faith’s fleece Chelsea blanket, she loves it and snuggles with it all the time.

Update 4th February 2012

Faith had a great start to the New Year. We had a great appointment with her joint specialist and was told for the first time in 4 years that she doesn’t have any active (new) arthritis and it meant we could really focus on some intensive physio to rebuild the muscles in her joints that have been unused for some time. Over the month and the onset of the cold weather her fingers have shown signs of some arthritis returning but we are working very hard to keep this at a minimum and can only hope it stays at bay.

Faith also had her Annual review and again we had great news that she has not had any major set backs this year. They are concerned at the amount of admissions she has had with symptoms of Aspergillus and are treating as such to hopefully avoid more admissions into hospital, so it means more physio and Nebs at home, but if it keeps us home it’s worth the extra work. They are happy to continue with the current regime of medication and are very happy with how Faith can bounce back from illness and how she deals with it all.

During this time we had a role reversal with Alice being rushed into hospital for 6 days having an ovarian cyst that eventually burst causing huge distress and pain. However she coped well and it was very reassuring knowing the staff on the ward and Faith got to see the other side of being in hospital, mainly being spoiled by Grandma and Granddad and also not knowing what’s going on. Alice also got to see it’s not all fun and games when you’re poorly.

All in all not a bad month – apart from the little blip with Alice – and we are looking forward to this trend continuing. We have also discovered that with Faith’s passion for baking cakes we can incorporate a lot of physio with all the mixing and especially the pipping of the icing. It works her fingers really hard and best of all, we get to have yummy cakes and treat our friends when they visit. She’s getting very good at it and has been asked to make the cakes for her Grandma’s upcoming birthday.

Faith is in the middle of choosing her GCSE options for September so I’m feeling a little like where has my baby gone! But so far every teacher we see says they would love her in their subject, so it’s not making the choices any easier, but she has been told P.E. is possible so I have a very happy girl. With all her pain management issues we were a little worried she wouldn’t be able to keep up, but they are able to adapt the course slightly for her.

We are hoping for a little snow whilst we write this update, and the girls are hoping for a lot… I’m well stocked with carrots in case we get enough to build a snowman!!

All that is left to say is thank you all for your love and support as ever. Thanks to Fiona, Sarah, Glad and Libby for their cards and to Glad for the lovely bath bombs that came at a perfect time with Alice in hospital. HUGE apologies if I have forgotten to thank you personally for post, but they are all very much appreciated and always bring lovely smiles.

May you all have a good month and God bless and keep well and big smiles from us!

Update 17th January 2012

Sorry for the delay, this is due to me having an operation and making a slow but steady recovery.

November saw us in hospital with Faith’s chest infection and we escaped in time for a lovely family wedding in Leeds. It was lovely to see both Alice and Faith all dressed up and looking radiant. The trip tired Faith but she loved the time away catching up with family we haven’t seen for a while.

Faith continued to be in pain with her joints but this eased as the month went on. She saw the foot doctor who has braced her foot, to give extra support when walking, and it was also finally agreed that they will operate on her toe to remove the ingrown toe nail that she has had for the past 18 months. It’s a little thing to you and me, but it’s another problem that causes infection, pain, and discomfort to Faith.

Faith has sadly had to give up Kickboxing as the pain on her joints are very damaging and she is finding it hard to cope after sessions – it was a tough choice but health always has to come first.

The Post Pals balloons came at a time we needed a smile (while I was recovering from my op) and they did the trick and both girls loved them. To hear two teenagers squeal with delight as they floated out of the box was wonderful.

In December the family health continued to improve and for the first time in a long while we were all healthy and happy for the Christmas run up. Faith had her pre M.O.T appointment and all was looking good for the big appointment in January.

The girls had such an amazing amount of post for Christmas. As ever, thank you to everyone who has sent post, but especially Sarah, Tony & Eileen, Fiona, Glad and Libby. The elves spoilt both girls with make-up, nail varnishes, smellies, a Cheryl Cole calendar, a lovely signed photo of a Chelsea player, a Chelsea team print with Faith’s name on the shirts, stationary, hair bits and Alice even had a lovely dress. Thank you all so very much. We had a very relaxed Christmas having dinner with the family at the local pub, meaning no cooking or shopping for anyone, and also no dishes to clean afterwards.

We cannot thank you all enough for the love and support you have shown us during 2011; it has really bought some HUGE smiles to my girls’ faces and also to mine too. Thank you. We are looking forward to a happier and healthier 2012. Thank you all and thank you for the smiles. Lots of love and best wishes to you all.

Update 2nd November 2011

Faith has had a really bad month. Her general health deteriorated and she devolved a sinus infection that saw her face swell up and her pain went out of control. She was put on yet another course of antibiotics and things just didn’t shift. Her infection went to her chest and she was admitted to hospital for IV antibiotics, rest, and intensive physio input. Whilst in hospital Faith went onto a nebuliser to help clear the gunk from her lungs – this was very successful, but left Faith extremely tired. After 5 days of constant sleep, physio and medication, she turned the corner and was able to come home in time to go to a family wedding this weekend. Her low point wasn’t helped by her beloved Chelsea losing 3-5 to Arsenal but she is looking forward to going to The Bridge to see them play at the end of November, and is even more excited as her Granddad is taking her.

Whilst in hospital we had a routine appointment for her podiatrist and they have fitted her with a brace to re-align her leg bone as it is twisted, this combined with her arthritis makes her ankles very painful so this should help and give some pain relief. We go back in mid November to get some feedback and to see about having some inserts for her shoes.

Faith is still very tired and needs time to get over such a nasty and prolonged period of being unwell but is getting there with baby steps.

Alice was lucky to be away on a little holiday with one of her friends while Faith was in hospital so that made life much easier, so she was having fun shopping in Bristol and seeing the sights.

It has been lovely to get to know a bit more about our regular writers and we all love hearing what you have been up to. We would like to thank Post Pals for the lovely Halloween bags the girls received as they were great fun and the girls put them to good use for trick or treating. Even though Faith was in hospital she didn’t miss out as the local radio station Heart FM came round and gave out sweets to all the children on the ward.

We look forward to sharing Faith’s continued recovery next month but wish you all well and hope you all have fun with Fireworks night. Keep safe and thank you for the smiles.

Thank you to all who have sent post, especially Glad and Fiona, it creates big smiles all round. Faith was very impressed with Fiona’s new found computer skills. Special thanks for all the lovely cards and gifts Alice received for her birthday too.

Thank you for you lovely support over a tough month while Faith has been unwell and in hospital.

Update 9th October 2011

September saw a return to school, both for the girls and me, which has come as a shock to the system! We had just got used to going back to school as I set off to Scotland for a weekend and the girls stayed with Grandma and Granddad as I took on the huge challenge of climbing BEN NEVIS to raise money for the CF Trust. It was a lovely moment to be able to phone Faith from the top of the mountain to tell her I had made it. She was very proud of me as were the rest of the family.

Faith isn’t too keen on her new tutor but I think this is partly due to the fact she has been feeling poorly. Her chest has been very sore and for a while they thought she may have pleurisy, so treated accordingly. Also, her joints have been very stiff and sore, and mid month we went to the CF clinic and had a really good overall. The doctor is slightly worried about her chest and is keeping a close eye on her. She also had a review for her joints and it was decided that she should have more steroid injection to see if this could relive the pain and improve movement. We had these done on Wednesday but sadly they have only helped very slightly in her left ankle and no improvement in her wrists. She had both wrists and both ankles injected.

Also, by the time I have written this Alice has celebrated her birthday and we thank you for all her lovely cards, especially to Libby and also Glad who shared her birthday too. We had a surprise party at home for Alice and she loved it, and the following day I took her to London to see Buckingham Palace and the royal wedding dress and we had a fabulous day in the glorious sunshine.

I hope to bring better news next month and Faith’s chest is better by then. Let’s hope you all keep the winter bugs away and stay safe.

As ever, thank you to every one who has sent smiles to the girls and a special thank you to Tony and Eileen. Thanks to Laura for the lovely CD too.

Update 15th September 2011

Faith has had a good month, the highlight being the holiday Post Pals organised for us. We had lots of fun in Berwick upon Tweed and the girls both loved doing water sports, horse riding and rock climbing. We even went to Edinburgh (a first for us as we have never been over the border) and we looked around the Royal Yacht Britannia which Alice loved as she is hugely into the royal family at the moment.

Faith has suffered with swollen joints after the holidays but this is to be expected after a busy week. We will see if they continue to trouble her after a week or so back to school.

I have been to Scotland again climbing Ben Nevis for CFTrust and Faith and Alice are both very proud of my achievement. It took 9 hours but was worth all the pain in the 70mph winds, rain sleet and hail.

We hope you are all as well as you can be and keep smiling.

Can we say a special thank you to Glad this month who always sends the loveliest of smiles. A huge thank you to Post Pals for the girls’ gifts too as they have enjoyed all the crafty things and the colouring pencils were fab to return to school with. Also, thank you for both stationary sets which made going back to school a happier time. A huge thank you for all post and every smile we received this month.

Update 3rd August 2011

This has been a very odd month, it started with Faith being well and we had a massive Heath fire and houses and up to 2 streets away were evicted and this left loads of thick heavy smoke in the air. This caused Faith to start coughing and developed into a nasty chest infection. After 3 weeks of fighting the infection at home, Faith was admitted into hospital and had an intensive course of IV antibiotics. She stayed for 11 days and we came home very tired and worn out. Faith returned to school part time after a week resting at home and met some new friends at school who will be joining her year group in September. Faith also said farewell to her Form Tutor so is looking forward to having a new Form Tutor next year. The first Saturday after Faith broke up from school she took her Kickboxing belt grading and was very nervous as she had missed so many training sessions with being unwell. However she passed and was just half a point away from a credit. She is very proud of herself.

Faith’s joints have been up and down with her ankles swelling up and down but they seem to have settled now. However after a routine physio appointment it seems her wrists have lost some movement and they are watching that very closely, hopefully with the summer holidays to rest them and some more intensive physio they will improve.

As before both girls have been very spoilt with their post which has created loads of smiles and we thank everyone. The best by far though has to be the fact we have been given the opportunity to have a week long holiday in Northumberland in August. We are so excited and cannot wait, we are taking my Mum with us as Paul has to work and she helps out a lot. We will look forward to sharing our holiday tales with you soon.

A special thank you to Tony and Eileen from Faith and to Libby from Alice. Faith loved receiving her Chelsea pillow and Alice’s favourite was her lovely mask from Libby. Continued thanks to everyone for the smiles, especially while Faith was in hospital.

Keep well and thanks for the smiles 🙂

Update 5th May 2011

Faith had a mixed month in April. Her joints have given great cause for concern becoming very stiff and sore and caused a great deal of discomfort when mobilising. After a bit of juggling of medication she is now a lot better in her joints and is able to move more freely.Her review at hospital was very positive and we are now to continue with the new regime and hopefully continue to see an improvement.

At the beginning of the month Faith was generally under the weather but we couldn’t put our finger on it and after a week off school, on the first day of the Easter break, Faith had a very red and unusual looking rash all over her face, so a trip to the GP told us she had been suffering Slap Cheek Fever! Normally a fairly mild aggravation to children but with all Faith’s complications it had knocked her off her feet.

The second week of the Easter break we headed to Devon for a family holiday in Ilfracombe and were blessed with glorious sunshine and no rain. The girls, my partner, his daughter and I, enjoyed long days on the beach body boarding and Faith enjoyed the simple pleasure of flying a kite and spent hours flying with Paul.

We celebrated Faith’s 13th birthday after our return, but sadly since we’ve come home Faith has been back in hospital with suspected pancreatius, and although this was not the case, the hospital discovered she had swollen Lymph nodes. So after a week of serious pain and another week off school, she was able to come home and enjoy the Royal Wedding.

Faith has finally gone back to school this week and although being tired she is in good spirits and is returning to kickboxing training this week as she is taking her 1st grading at the end of the May (all being well).

I cannot possibly mention everyone who has sent the girls post, cards, Easter gifts, birthday presents, and happy smiley wishes for both Faith and Alice, as they have had so much, all extremely lovely and all have put a huge smile on their faces. Alice especially loved receiving her book and has already started reading it, as has Faith. All the make-up and toiletries have made for two very nice smelling girls and I now am able to get my nails painted as well with new nail varnishes. I cannot say thank you enough. But each and every one of you has bought happiness to our little family.

Hopefully next month will not be so eventful but until then God Bless and thank you for the smiles.

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Emily B

17 March 2011

Story written 2011

Emily was diagnosed with Cystic Fibrosis in 2007 aged 8. This was a shock to us and as a family as we knew nothing about this disease then. Emily has to have physio twice a day and she takes up to thirty to forty tablets a day plus 5 nebulisers a day to help her lungs. Emily also has CF related liver disease and has to have a lot of scans to keep a check on her liver.

Emily has a portacath fitted now and this makes her IV’s less traumatic for as she hated having long lines so much. We can do home IV’s for Emily when she is well enough so it is fantastic for her as she can carry on at school and do everything she likes as normal.

Emily also has high calorie drinks everyday to keep her weight up and I must say she loves them but only chocolate flavour Calshake!

Emily has 2 older brothers and 3 older sisters. Danielle is the only sister who is still at home. All love her very much and encourage her so much. It has been hard for us as a family with this diagnosis, but as a family we will get there and battle this with Emily.

Update 28th March 2015

To everyone at Post Pals, as I am now 16 I feel that it is time for me to move on so that another new Pal can join and receive some lovely post like I have throughout the past few years.

I just want to thank everyone for the letters, cards and amazing gifts, that I have been sent over the years. Me and my family have made some life long friends through Post Pals who we would love to stay in contact with!

You all do an amazing job and it puts lots of happy smiles on us kids (and our family’s) at the darkest of times. Thank you once again for everything!

Lots of love, Emily B and family xx

Update 16th May 2014

Thank you to everyone who has taken the time to send letters, notes and gifts to Emily. It has meant a lot to her (and to us as a family) to think people out there do care. It’s been a tough few months for Emily so I’m sorry we haven’t been keeping you up to date with everything recently, but hopefully we will be back to normal with Emily’s posts soon. Thanks again.

Update 28th September 2013

Emily hasn’t been too well for the past 3 weeks since we came back off holiday. She’s had two lots of oral antibiotics to try to clear a nasty cough but it has done nothing and all she’s wanted to do is sleep.

She had clinic a few days ago with her consultant and Prof David who comes every few months to our clinic, there was also CF nurses and lots of other people there – just a busy clinic. Emily’s consultant was going to change her oral antibiotics to see if that helped her for now but the Prof said NO he said she was better to start IV’s. Emily wasn’t too happy about this as it has only been 7 weeks since she last had her IV’s but that’s the plan. She starts them on Tuesday 1st October and finishes them on her birthday 15th October – what a birthday present!

Thank you to Claire for her parcel, she received it today and she will take this into hospital with her on tuesday! Thank you to everyone who is taking the time to make my lovely daughter smile!

Update 31st July 2013

Thank you Post Pals for being there this month, especially for Emily and Faith, after they lost their lovely friend Lizzie. You have been amazing, as always!

Thank you for all the lovely letters Emily received this month, they really did put a smile on her face! Everyone has been so kind, it really does mean a lot to Emily and to us too! Thank you.

Update 5th May 2013

Emily has been through a lot this month with her Iv’s and also having her tonsils out. She has been great though and never complained at all. Her operation went really well to take her tonsils out and she was so brave – we even got pictures from her surgeon of her tonsils, yuck! She has been in a lot of pain trying to eat though and she couldn’t go out or go to school for 2 weeks so she did get very bored. She is so glad she’s had it all done and is back at school now though and has her lovely smile back on her face.

Thank you Post Pals for the lovely parcel you sent Emily, it really cheered her up while she was recovering from having her tonsils out.

Update 17th April 2013

Emily’s has had her tonsils removed, she has been in a lot of pain and is also on her IV antibiotics, so she’s really not having such a great time at the minute. Emily’s not allowed out for two weeks in case of infection.

Update 4th April 2013

Emily hasn’t been doing very well at all, she’s had a lot of chest infections and tonsillitis so has missed a lot of school the past month as she has been so low. Today she went into hospital to start her IV antibiotics and also have a Glucose Tolerance test to check she doesn’t have diabetes. Then after her first week of IV’s she is having her tonsils removed (on the 11th) then after that continue her last week on IV’s… so please keep Emily is your thoughts and maybe some happy post would be lovely to cheer her up. Thank you!

Update 30th November 2012

Emily’s just getting back on her feet after breaking her ankle – the worst thing ever for her as she couldn’t even go into school because she couldn’t weight bare at all, so it was a very long few months. She is now back to dance classes and back to cheerleading so we have a happy Emily again!

At the minute she is having a bad time though with tonsillitis yet again, I think this is the 7h or 8th time now, but this time she is being referred to E.N.T. so let’s hope they get her in and take them out as it stops her having her nebs etc.

Emily is due her IV’s over Christmas and new year, so we will be glad to see the back of this year, that’s for sure!

Thank you to Alex, Natashja and Kerri for the lovely cards and parcels you have sent Emily this month, she has loved every one of them!

Update 8th November 2012

Emily is off school again and on another 2 weeks of oral antibiotics as she’s just been so run down. We think she’s been trying so hard after breaking her ankle which isn’t right yet – she’s still walking with a limp and has only been back in school now a few weeks and that’s been since summer holidays, so she’s not had a great time at all.

Emily loves receiving post! Thank you to Alex who sends her post, she’s such an amazing woman!

Update 23rd June 2012

Emily has been doing pretty well recently, but has had a few bouts of Tonsillitis so we’re waiting to see what her consultant is going to do about this. We seem to be going back and forth for antibiotics and she’s on her IV’s right now as she has a bout of it again. We are all really happy with her lung function and everything else though, so that’s all great!

She’s been training lots with her cheerleading squad for a few competitions that are coming up soon and she even does all this while she’s on her IV’s, nothing stops her at all. We do her IV’s at home now so she can carry on doing all her activities including her dancing. Emily’s just so active and loves to be like this while she feels well enough and its great for us to see too!

She’s doing so well in school and is going to Year 8 camp soon so that’s going to be great fun and an experience for Emily.

Emily had a gift from Post Pals that was a monkey called Dave – we did have a laugh with him as Emily’s Dad is called Dave!

Update 9th April 2012

Emily’s Iv’s didn’t go too well this time, it was a nightmare from the start as they didn’t have any beds to admit her and she had been unwell for over a week. Her specialist nurse and consultant wanted Emily to start her IV’s as soon as possible but we kept being told there were no beds. In the end Emily’s consultant had us bring Emily into hospital for a few hours to have her gripper put in to start IV’s then she could go home after a few hours. However this never happens as they like to keep an eye on her over night to make sure everything is ok and she gets to see physio etc, but with this bed situation Emily’s consultant didn’t want her to wait any longer as she wasn’t 100%! Well, IV’s started and we got home, but that night Emily started complaining of pains in her port site, so we could only give her some painkillers and make her comfortable until the morning when we then rang the hospital to tell them. We were told not to worry and someone would get back to us. So we waited and the pains didn’t go away… so we called again, but still nothing. We had to just keep giving pain relief to Emily and after 2/3 days we spoke to her specialist nurse and explained what was going on and she contacted the consultant. We had to take Emily up to hospital and they just had a look and made sure it was flushing ok etc but we had already said that it was. The pains never went away and Emily was so unhappy, she didn’t want to do anything and days were passing by and we just felt so useless. Then we had another bad night with Emily up all night so we’d had enough and called them again in the morning. They had us go back again and this time they X-rayed her port site and also put a dye through to make sure there were no blockages. As we had told them before though, her port had been flushing and was drawing back fine so we didn’t think it was a blockage, but it was best to check it out, as we were baffled with Emily’s pains. A few more days passed and Emily couldn’t cope any longer so we went back and they decided to change the gripper and tried putting another in but that failed and it bent going in. By this time Emily was hysterical and wouldn’t let them near her again (this was day 9 of her IV’s so she had put up with enough really). We saw the doctor on duty and he said it looked like the antibiotic had irritated her vein which caused the pain. This has never happened before to Emily and we really hope it doesn’t happen again either. The doctor had to put Emily on some oral antibiotics to cover the rest of her IV’s as she hadn’t finished the course! It took almost a week for the pains to go after all that but it was so good to see Emily back to normal and having her lovely smile on her face again!

Thank you for all of Emily’s post. Emily has had some lovely mail from Alex Stiles Welch, she has boosted up Emily’s mail so much recently, it’s so lovely. You all do such amazing jobs to bring smiles to our kids, we can’t thank you enough. Thank you all very much!

Update 29th February 2012

We had an appointment to see Emily’s liver specialist in Manchester a few weeks ago. We have always known that her spleen was enlarged because of her liver disease, but today we found out that her platelets are dropping because of her spleen and if this carries they have no option but to remove Emily’s spleen. We are hoping that this takes time and things slow down as they couldn’t put a time on how long this could take etc, so at the minute they will take regular blood tests when Emily goes into hospital for her IV’s. Right now all we can do is hope her count stays where it is at now… that was 99, so fingers crossed!

Emily now attends a dance school and does Tap, Ballet and Contemporary. She had her first ballet panto last weekend and made us very proud.

Update 4th February 2012

Emily’s not been too bad this month. She’s had a lot of hospital visits and different tests being done this month, GTT test, liver scan, x-rays, lung function. We just hate waiting on results.

She’s been doing well in school and had her school report at the end of the month. We were really pleased with her straight A’s and 2 B’s in effort. Well, we can’t ask for anymore than that from her and we’re so pleased for her. We just hope she can keep it up and maybe have a few months break so she can stay well to stay in school more.

Update 11th January 2012

Emily had a bad run up to Christmas as she just had no energy and was coughing constantly. We took her up to hospital one night as she couldn’t breathe properly. Her chest was tight and they put her on some oral antibiotics for 2 weeks but that didn’t really do much to help. Emily also had a cheerleading competition coming up and she was determined she was going do this. We spoke to her consultant and he is all for Emily doing her activities, so he said she could go ahead with this competition and then they would admit her early to start her iv’s. Emily did so well at her competition and her team came home with 15 trophies, so she was very happy. Emily then went into hospital to start her iv’s and once they started to work we all had a lovely Christmas and New Year.

Update 2nd November 2011

Emily has been off school and under the weather after having her cervical cancer jab a few days ago and then yesterday her flu jab too. These have made her feel unwell so she’s been busy doing her Christmas cards for Post Pals.

Emily loved all her cards she received for her 13th birthday and it made it even more special for her, so thank you all again. She also loved her Halloween gift pack that she got in the post, it was really lovely.

Update 10th October 2011

Emily hasn’t been too well again this week so we had another visit to hospital. She has a viral throat infection and was given some oral antibiotics and spray for her sore throat but her chest was clear which was good news. We’re so pleased about that as it is Emily’s birthday on Saturday and she is having a massive party with all her friends and a limo with her close friends, so I’m sure she will be back to herself by then and have loads of fun. She is very excited about it all now!

Update 4th October 2011

We’re not having a good time at the minute with Emily as she’s been off colour quite a lot and is now on more oral antibiotics. It is not that long since she finished her iv’s either so she seems to be at home a lot at the moment.

Update 24th March 2011

Emily is off school ill again at the moment. We took her to our hospital to be checked out and she has an ear and throat infection which is making it hard for her to breathe properly. The post she has been getting has made her smile though so thank you all.

Update 10th March 2011

I would like to say a big thank you to Nichola, Jon & Daniel W, for the beautiful card Emily-Jo received today, it’s just what she needed as she has been off school unwell the past few days and she just finished her iv’s too so she’s just resting now and getting better.

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