William M

18 June 2012

Story written 2008

William was born prematurely and went home with chronic lung disease, requiring oxygen 24 hours a day. His condition worsened rather than showing signs of improvement and he was diagnosed with ‘presumed cystic fibrosis’ (CF). He underwent vigorous treatment for this, including frequent hospital stays for IV antibiotics and an operation to insert a port-a-cath. His health was deteriorating more rapidly than expected for a baby with CF.

He had his first birthday in hospital and was back just a few weeks later. During this admission he had several tests. These revealed that he had very severe reflux and problems swallowing so a tube was inserted through his nose, through his stomach and straight into his intestines. We waited in hospital for an emergency Nissen Fundoplication, a procedure to prevent stomach contents from escaping up into the gullet and lungs, and a gastrostomy so William could be fed straight into his stomach until he was old enough to learn to co-ordinate his swallow. William spent time in PICU following the operation and was then transferred to the high dependency unit before going back onto the ward. We were expecting to be home within a few weeks of the surgery but things did not progress well. It became clear that William’s main problems were to do with his stomach and intestines rather than his lungs. He was in intestinal failure. Nothing was moving along or being absorbed so it was flowing back into his stomach and refluxing into his lungs, causing damage and frequent infections.

After three months in The Royal Brompton Hospital, William was transferred down the road toChelsea and Westminster Hospital where they have a specialist gastroenterology team. They diagnosed that he has intestinal failure and is unable to tolerate any feed or drink. Instead, he is fed by an intravenous feed called TPN (total parenteral nutrition) given direct into his blood stream, through a Hickman Line in his chest. He is on his drip 20 hours a day. William continues to have frequent hospital stays due to very sudden and life threatening infections in his line. He can be playing happily and critically ill with septicemia within five minutes as the bugs in his intestines leak into his blood stream and infect his line. To help with this, he had further surgery this year to create an illeostomy so the fluid that accumulates in his intestines can drain out through his stomach into a bag. However, he has continued to have frequent and dangerous infections and is now showing early signs of liver disease. His future is very uncertain and his condition is considered to be life limiting with immediate threat to life because of the infections. We are currently waiting to go to Birmingham Children’s Hospital so William can be assessed for a small bowel transplant.

William needs a lot of care at home. We have appointments most weeks and William can be admitted to hospital in a life threatening condition very suddenly. Hospital stays often stretch from days to months. All this puts a huge amount of pressure on the family, especially for Hope and Ellie.

William also has cerebral palsy, affecting his legs, and uses a wheelchair when out and about. He is about to get a powered chair to help him gain independence as he grows older.

Update 31st October 2020

Thank you for all the support during these crazy times. William really appreciates all his cards and parcels. Like many Pals, he is on the vulnerable list but is at school because he needs to see his friends and family has GCSEs next year. He continues to be on overnight feed and has his ups and downs with his bowel. He has just had a hospital admission which went pretty well. He transplanted bowel is doing great. He has had some minor liver rejection and his own native stomach can cause inflammation and pain. He is passionate about film making now and hoping to do a course on this after GCSEs. I hope everyone stays safe in these times.

Update 6th October 2019

Thank you to everyone who sends William post, especially to those who send his wonderful monthly gifts  and fortnightly writers and regular writers. I have been bad at keeping lists and taking photos these last few months as I have been unwell with tumours and a hysterectomy. We are so grateful for everything and Wills loves his post. I’m getting back to normal now so will share more photos and thank-yous. 

William has had a relatively good month with just a few ups and downs. He is waiting to go into GOSH for two weeks of unpleasant and painful tests to see if he needs some further surgery on his transplanted bowel. If this is so, he will have the surgery in Birmingham in the coming months. He is dreading all of that. Despite this, he is doing well at school and is in year 10 now so beginning his GCSEs. His favourite subjects are history, media studies and English

Update 18th November 2018

Thank you all for the wonderful welcome back to Post pals over the last few months and the generous gifts, letters and cards. You have all made a difficult time in William’s life so much easier and happier. We had an amazing time at Chessington and Wills loved it so much – especially dragging me onto all the rides in the rain on Sunday morning, winning the ice-cream challenge and seeing all our Post pals friends again.

William is pretty much the same as when we rejoined in the summer. He is still on his  gastrostomy feed 20 hours a day and has his Hickman line. He remains very distended and ‘full’ in his tummy but has got more used to living this way now. He started his GCSE studies in year 9 in September and gets to school as much as he can – pump and all! His discharge summary mentioned chronic inflammation in his bowel so we will see how things go over the coming months. Being part of the wonderful post pals family again certainly helps us both loads with the ups and downs and the worries and uncertainties.

Update 28th July 2018

We are going home today after 5 weeks so he can be home for his birthday and have a break. He will be back in 3 weeks. He’s back on 24 hour feed and things like iron infusions and iv fluids when needed. His pseudo is effecting his stomach and duodenum so he’s very uncomfortable.

Update 3rd July 2018

William is back on TPN and will be for a while, potentially long term. His stomach is not functioning and emptying properly and as a result he has developed ulcers. There was a litre of fluid in the top end of his bowel when they scoped. We will be in hospital for a good few weeks at least and home back on feed pump, perhaps back on home TPN. We don’t yet know if this is chronic rejection.

Update 1st July 2018

William has been unwell for the last few months on and off, nothing too specific, just pain, tiredness, some general viruses and being generally run down and slow. He had been losing weight but we put it down to struggling to keep up with puberty. Last Saturday he started a big bleed in his transplanted bowel and it has taken a week on octreotide, a drug to stop such bleeds, to stop the bleed. His HB dropped to dangerous levels and his kidney’s are currently wobbling as a result. We are not yet sure what has happened, if it is PTLD (a post transplant form of cancer), some kind of chronic rejection or if a virus has damaged his bowel. He is back on TPN and we are anticipating a relatively lengthy stay and going home with a line in, potentially some TPN and certainly with an end to the precious and fantastic 18 months we have had free of lines and feeds, needles and hospitals.

Update 28th January 2016

Thank you to William’s wonderful elves and other fantastic people who sent cards and gifts for Christmas. It was a very special Christmas as it marked a year after William’s second multi organ transplant. Wills is doing well. His bowel is working well, although he has recently lost a lot of weight and is back on overnight feed, though still eating well too. He just needs the extra calories. He still has his graft-versus-host disease and has treatment monthly in Rotherham Hospital for two days. This will be for life, but the team have learned a lot about how to treat it and get it under control for both Wills and others who follow him.

Update 5th May 2015

William is doing well since his transplant and is now back at school. He is still battling GVhD (graft-versus-host disease) where immune cells from his donated organs have mixed in with his own and are attacking his own body as a foreign object. He has treatment for this called photopheresis in Rotherham for three days every two weeks and stem cells and high dose steroids in between, where needed. He is being brave as always.

Update 10th January 2015

William had his call for re-transplant on 19th December. Although we were of course on the list it seemed to come very suddenly and everything happened quickly. He had been going down hill in the month before the call so we were very lucky and grateful to his donor and the brave family who gave their precious child’s organs for transplant so soon before Christmas.

William had a very difficult time in PICU with kidney failure and respiratory failure caused by influenza when he had no immune system at all. It was a very scary time for us all. He is now doing a lot better. His new organs are fantastic at the moment. It is very early days and things can change fast but so far so good and we are being positive. We will be in hospital for a good few weeks yet and then six months isolation recovering at home.

Thank you so much for the lovely hamper Post Pals sent us to help us celebrate Christmas. It was a strange time as Wills was very sick in PICU at the time but the hamper and gifts helped the girls and I to enjoy our day together. Wills and I celebrated Christmas on 12th Night. Thank you also for the cards and presents he has received. They really cheer him up and it is great to know there are so many people behind us and rooting for us.

Update 28th December 2014

William received his call on the 19th of December. He lost a lot of blood during transplant and his kidneys have been in shock so he was put on dialysis. In the early hours of Christmas Eve morning his Mum was called in as he wasn’t coping on the ventilator and had to be changed to an oscillator. Thankfully his oxygen levels came up. On Christmas day he was able to be moved back onto the normal ventilator, opened his eyes, and indicated he wanted his stocking. Since then his kidneys and new bowel have started working and he has come off the vent although his lungs keep collapsing. William has opened a few presents and watched Miranda Christmas special twice!

Post Pals was able to send some last minute hampers to bring a bit of Christmas to William’s family but they will be in need of smiles over the coming weeks and months.

Update 3rd December 2014

It has been a difficult couple of months for us as the team have decided that William’s transplanted bowel is now in chronic rejection and he needs a second transplant. We are back on the transplant waiting list, this time for a multi organ transplant. It is a huge risk and Wills is very aware of this. It is a lot more scary second time round as no one knows what will happen and if his body will cope. We don’t know when the transplant will take place, we are just waiting for the call to say a donor has been found.

In the meantime, Wills is on his TPN 20 hours a day and we are doing the best we can to make lots of precious memories and treasure all the time we have together.

Update 7th August 2014

William’s transplanted bowel is sadly still not working. He has been struggling a lot with fluid balance and dehydration and so is now on his TPN 20 hours a day. This is a huge set back and his transplant team have decided that now is the time to think about whether or not this bowel will work for William again. We are going for more tests and re-transplant assessment next week. First though we celebrate life and our precious and wonderful donor and her family at The British Transplant Games over the weekend.

Thank-you for all the wonderful post. Wills had loads of birthday cards which helped brighten up a birthday which he found very difficult as he wasn’t feeling too well.

Thank-you to everyone who was involved in the party. We had an amazing time. Wills especially loved the spider!

Update 25th February 2014

William is going to theatre tomorrow for a fairly big operation. We really hope this will help his current situation. He will remain in Birmingham Children’s Hospital for at least a week and then will be in Chelsea and Westminster Hospital for as long as it takes to set up home TPN – this can be as long as 2 months but we hope a lot less as Wills has been in hospital all of this year.

Update 18th February 2014

The MRI scan and contrast study he had last week have shown that he has a partial obstruction caused by narrowing in his bowel behind his stoma. He needs an urgent operation but it can’t be done until Wednesday next week. He’ll be in Birmingham about 2 more weeks and then transfer to Chelsea and Westminster to sort out home TPN. We hope the operation will solve a lot of his current issues but the team still think his bowel has had a big hit and he’ll need TPN for a while at least.

Update 16th February 2014

Wills has now been in hospital for 6 weeks and the end is not yet in sight. His transplanted bowel is not absorbing after a virus and we don’t yet know if it will heal or not. He had been through a lot of procedures and has been very ill with pneumonia from aspirating bile into his lungs. He is having a jej tube inserted this week and then we will transfer back to Chelsea and Westminster hospital to organise the funding and care packages for home TPN and iv drugs. We are expecting another 6 – 8 weeks in hospital and life will be changing quite drastically for us all.

Thank you to everyone who has sent cards and smiles. You are making a huge difference at a difficult and worrying time for Wills and all of us.

Update 31st January 2014

Thanks for the wonderful cards that are brightening William’s room. Thanks also for the DVDs and other gifts. I’m sorry I can’t thank everyone by name. Wills has become very ill over the last 48 hours with pneumonia and has been needing a lot of oxygen and CPAP. We narrowly escaped PICU (they got as far as assigning him a bed which they are still keeping free for him in case) and everything in our room was moved around to make space for the extra equipment and people coming in and out and, in that, I lost the list of people to thank.

Wills is very poorly and just sleeping at the moment but will enjoy everything when he feels a bit better in a few days. Sadly, this will make this stay even longer as we have to get over this before we get on with the plan to get his TPN stable enough to transfer back to London and get set up for home TPN again.

Update 6th January 2014

Wills has rejection or infection, not sure which. We’re in our local hospital at the moment but may transfer to Birmingham. In the past, these situations have led to very long stays and going right back to square one so we are hoping not this time.

Update 2nd July 2013

William has been doing pretty well over the last few months. He is having a few little difficulties though. His transplanted bowel is fantastic and keeps him alive and healthy in general, but it isn’t absorbing food as well as it should and, after a few months losing weight, William has had to go back onto overnight feed every night with no nights ‘off feed’ anymore. His bowel can’t cope with the volumes needed on the feed nights anymore to allow feed free ones. William was disappointed with this as he had worked hard with his eating to earn these nights off.

William has mild cerebral palsy and we have always been warned that this may impact him more as he grows. Over the last few months he has developed spinal curves called ‘hyper-lordosis’ and scoliosis. This is caused by his right side being weaker than his left and having hyper mobility in his trunk. We are waiting for a hospital referral to see a spinal specialist. It is likely he will need a brace. In the meantime we are implementing a new physio program that Wills isn’t too happy with. We’re looking for ways to make it fun for him so it doesn’t seem like a chore or ‘treatment’.

We have an exciting summer coming up with a birthday party, a holiday in Devon and preparing for a new school as William is leaving his special needs school to go to a mainstream school with support. It’s a huge step but will be fantastic for him, although I am, naturally, concerned about him leaving his little bubble, especially at a time when there are a few changes for him. The OT had just told the school which special chair to order for him but, now having seen his back, thinks they need to cancel it and buy a more supportive one. I guess that will help them learn how things can alter so fast for our children.

Thanks, as always, to everyone who sends William and Ellie post. He is always so excited when the postman has something for him. I hope you all have a wonderful and sunny July.

Update 4th January 2013

Happy New Year everyone! Thank you so much to everyone who sent the children gifts and cards, especially the wonderful elves. The children loved everything they received. It was a special Christmas because we were home for the very first time. William has only had three Christmasses home from hospital – one he was a baby and the other two we with family or friends so it was very special to be doing our own Christmas in our own home. We hoped to last year but Wills was rushed to hospital a few days before. We had a few scares that this may happen again this year as he wasn’t himself over Christmas and we had a few hairy days but we managed to stay home. We’re still not sure why he has been under the weather and tired over recent weeks so he’ll have to have some blood tests to see what’s going on. Hopefully just a normal virus.

This is potentially a big year for William as we have a big decision to make in March. Most bowel transplant recipients have their stoma reversed after a year but William still has his because he has no colon and his underlying diagnosis of pseudo-obstruction means we don’t know if the colon stump he has will work. For these reasons, at the time of his transplant we were told his stoma would be for life but there have been advances in the US where children like Wills have had constructive surgery to reverse the stoma. William’s team are divided as to whether we should give this a go or not as it is a big op and may not work. We are having his annual review in March and will all have a big discussion to make a decision. If we decide to try the surgery it will happen in the Spring. We’ll let you all know.

We hope you all have a very happy and healthy 2013 and we look forward to sharing it with you.

Update 7th November 2012

I’m sorry it has been a while since we updated. William had a tough start to the year but has been doing a lot better since but I have had some ups and downs and I’ve just been in hospital with my chest, which adds extra strain on the family.

William had a great summer enjoying the Olympics and especially Paralympics. He has since taken up archery so, you never know, you may see him there one day! After a rocky and worrying start to the year, his bowel has been behaving itself very well since and he has even been able to reduce his feed a little and have a night off the tube. We still have a long way to go to get him back to where he was before his last set back but he is doing really well with eating and drinking milk and everyone is very proud of him.

William has mild cerebral palsy and, its funny, but that only really comes into the foreground when he is medically well as it’s not a priority otherwise. Over the summer, William was getting more tired and walking more ‘lopsided’ than he had been and we think this is due to his body growing and putting different pressures on some muscles and tendons that are too tight and others that are too loose in his body. He has extra supports in his boots and we are hoping that will help. We are also trying to get him into more sports and activities that will keep his muscles strong so he can stay out of using his wheelchair for as long as possible but we are having to get it out on longer journeys and when he is feeling tired. Time will show if his cerebral palsy becomes more of an issue as he grows but he is a tough little thing and it rarely gets him down. The Paralympics were great for him to show him he can do whatever he wants to do – not regardless but because of who and how he is!

November is a special month for us as it is William’s transplant anniversary. We wouldn’t have him here with us if it were not for his wonderful donor and brave family and our thoughts and prayers are with them and the pals who are waiting for their special gift or whose gift never came in time.

Thank you for all the wonderful post that puts so many smiles on our faces.

Update 12th March 2012

William came home from hospital at the beginning of February. It’s great to be home and settle down again. William’s bowel is good enough to absorb special feed now where everything is broken down to it’s most basic and simple form but he still isn’t absorbing food properly. He is allowed to eat but we don’t count what he has as calories. He is still on his feed 18 hours a day. We don’t yet know if this is permanent or if he will recover but very slowly. He is going back into hospital in April for more investigations and to have his Hickman Line out – which is great news! Although he may need another one if he needs a spell on TPN again in the future, it is a huge infection risk to keep it in just in case. It has been hard for us all to adjust to William’s set back but we have settled into a ‘new normal.’ Cheery post really helps all three children and William is so excited when it arrives.

Thank you so much to everyone for the wonderful letters, cards, stickers, colouring sheets and craft sets William has received this month. He is always so chuffed and excited to get post. He especially loves things that make him laugh at the moment so a joke, funny rhyme or funny letter make him giggle and giggle for days. He also loves hearing about animals and their antics, especially Dotty!

I would thank people in person but William has torn a few packages before I’ve had the chance to jot down the names from cards that went with them and I really hate missing people out. Please know that everything is very much appreciated. Hope and Ellie loved their jewellery kits. Hope had a beautiful cushion sent to her when William was in hospital, as her January gift, and can’t find the card that went with it. Please let us know if it was you as she really wants to write and thank you.

Update 13th January 2012

We hope you all had a wonderful Christmas and that 2012 has started well and will be a fantastic year for you.

William had been doing really well for most of last year but became very unwell a few days before Christmas – wonderful timing! He had a viral gastroenteritis but, unfortunately, it really unsettled his bowel and led to some patches of rejection. We were transferred from our local hospital to Birmingham Children’s Hospital (our transplant centre) on 23rd December so spent another heart breaking Christmas in hospital and away from Hope and Ellie. Wills is still in Birmingham and has a new Hickman line ready to prepare to go home on intravenous nutrition and fluid support. We start the year with a great deal of uncertainty for all of us and it is hard for us all, especially the girls. We are very grateful for Post Pals and knowing that so many wonderful people care enough to send us smiles to help us on our way.

Thank you so much to postman Zack and his Dad who came to see us at Birmingham Children’s Hospital, the morning after our transfer there, to bring William a balloon and Christmas present from Post Pals. It really brightened up a stressful time and difficult Christmas and Wills loved his smiley balloon and Pepper Pig book and dominoes.

Thanks everyone for the lovely welcome back. William is delighted to hear from old friends and new ones and has an especially big smile when a letter from Dottie arrives for him.

Update January 2012

William has had a fantastic year and we were even weaning him off some night feeds but things have now changed so we are rejoining Post Pals.

In December, he had his annual review and, in general, was doing well but was diagnosed with asthma and had lost some weight. He became more and more chesty throughout December until, on the 20th, he woke with a fever and a high stoma output. It was the day of his nativity play and Wills didn’t want to miss it so we struggled in. By the end of the day, he was very unwell and back in hospital. We were all gutted to face another hospital Christmas but made plans to make the best of it but things weren’t improving so William was transferred to Birmingham Children’s Hospital on 23rd December.

He is still unable to eat or drink and is being treated for infection and rejection. It will be a long journey back until his bowel accepts feed again and we are expecting to go home on TPN. We were lucky to have had a stable year but we knew children who have had bowel transplants can enter back into more fragile health literally overnight and that is exactly what happened with Wills.

It’s upsetting and disappointing, especially for Hope and Ellie who are facing starting an important year (with GCSEs for Hope) with disruption and being separated from their mum again, but we will make the best of things.

I know Post Pals will help keep the children smiling like they have done before and we thank you all for that.

Update 19th February 2011

I’m sorry for the delays in updates. Wills has been great but I’ve (Mum) had some big ups and downs with my own health and been in hospital.

William has had a good couple of months. He had his school review which was very positive. I was hoping he would spend some time at a mainstream school but everyone agreed that he is best placed in the school he is in (for special medical needs and physical disabilities) without any sessions in mainstream as it would cause him anxieties given his Aspergers Syndrome. Wills still hasn’t yet managed a whole school year without any long hospitalisations and needs to have a good, long settled period.

William has started a special trampolining club and has already got his grade 1 badge and certificate. It’s great because the children get them when they do the exercises the best their bodies will allow. He absolutely loves it.

Oliver, the puppy, is growing fast and is giving William a huge boost in his social confidence.

It’s lovely to be able to write such a positive update. I hope they’re all like it this year.

Thank you for all the wonderful gifts the children had over Christmas. I’m so sorry for not being able to thank people individually. I was unwell over Christmas and didn’t manage to keep on top of our thank you lists. The children were all delighted with their gifts and elf boxes and the reindeers sent beautiful sparkly letters this year. William was really excited whenever one landed on the door mat. William loved his memory gift. He had a pet scrapbook kit which he is going to fill with memories of Oliver as he grows up. He also had a lovely photo block and a train card which he really loved. He is train mad still!

Update 2nd November 2010

I’m sorry for the lack of updates over the last few months. We’ve had a difficult time, not least because I (William’s Mum) have been ill and even ended up in intensive care for a few days. William has also been in hospital with a life threatening infection – something we haven’t seen since his transplant. All in all, it has taken its toll on me a bit and everything else has kind of stacked up and I’m behind. It’s all been very stressful and difficult for the children too. On top of all of that, we’re in the middle of a major building project to make our home wheelchair accessible for William. This adds to the stress and disorganisation but it will all be worth it.

This month sees William’s second transplant anniversary. It’s always an emotional time. William wouldn’t be here if it wasn’t for his wonderful donor family and we always feel mixed emotions on his anniversary as we think of the amazing family who said yes to save his life. This year has been a more difficult year than last and Wills has spent 3 months of it in hospital with various complications. He has had to go back to a special feed to help his absorption but it is still a million times better than life before his transplant – he’s still alive! I’ll update more about his transplant review next month.

William now has an official diagnosis of Asperger Syndrome on top of his health and mobility issues and this has been difficult to deal with. We need to spend some time reading and getting to grips with the huge amount of literature we have been given and come up with some strategies to help him learn to live with it. We do have some exciting news – a new addition to the family! Next month, a puppy called Oliver will be coming to live with us and learn how to help William cope with his Asperger’s. Oliver is a special wish from the Starlight Foundation and we are so grateful to them and Oliver’s breeder for their generosity. We will be busy training Oliver to do the things all dogs need to learn but, on top of that, I’m doing a special course to learn how to teach him to support William and help prevent and control melt downs etc and help William socialise. I’m hoping Oliver will soon be William’s special friend.

Hopefully, next month will be less stressful and I can give a fuller update. In the meantime, I wish everyone a fun filled and safe bonfire night and hope all other Pals have as healthy a month as possible.

Thanks for all the lovely letters and cards. We love the letters from Dottie. William called his puppy Stripe! As only William would do! We will get some photos and news as soon as we can. William loves his post. As things have been so hectic, I haven’t been able to keep lists so don’t want to mention any specifics in case I miss anyone, but thank you for everything you send. It has put some smiles on some very troubled faces in the last few months.

Update 3rd August 2010

William is coming home from hospital tomorrow! Please can post now be sent to the C/O address rather than the hospital, thank you.

Update 23rd June 2010

Wills is going on TPN on Friday and we’ll be here at least 6 weeks. I think the hospital address could go up as the main one on his page for a while sadly. Wills is very upset and frustrated so would love some post, especially making sets and Thomas things.

Update 18th June 2010

William is feeling very poorly and down now. We are going to be in Birmingham Hospital for a while so please can post come here. He is doing a World Cup project and collecting the Panini stickers (in pretty much every shop at the moment) so they would be great and cheap little things to send. He also loves sticking and making things and Thomas of course. We’re just hoping he won’t have to go back on TPN!

William M
c/o Ward 8
Birmingham Children’s Hospital
Steelhouse Lane
West Midlands
B4 6NH

Update 11th June 2010

William has been in hospital since Wednesday and will be in at least all of next week. He caught Rotavirus – a common tummy bug for most, but dangerous for bowel transplant children. He’s currently being treated to try and prevent rejection as this often triggers it and is off feed. We won’t be introducing feed again until next week and may have to go back to the beginning and do it slowly. Wills is very fed up!

Update 26th May 2010

I’m sorry for the lack of updates lately. Things have been hectic with juggling tight deadlines at work and a lot of hospital visits.

Wills is still doing very well after his transplant but we have had a few small setbacks. William’s illeostomy had been prolapsed for a while but, in April, the team decided it needed to be re-done. This meant having his bowel re-sectioned and a new stoma formed. Ten centimetres were removed from his bowel, which isn’t much, but it seems to have made a difference to his bowel function. It’s all still fine but William is having higher output and we’re back to measuring and replacing his losses. He’s very well in himself so we’re not too worried but will have to keep an eye out for signs of infection or rejection. We’re hoping his bowel will settle back down again. It can take time after bowel surgery and Wills always seems to do OK but take his time after these things.

The biggest news is that we’re nearly there with getting a diagnosis for William’s Asperger Syndrome. The sad thing is that we have found that he has a big problem with the sensory side of autism and that will have felt more intense pain from all the operations and procedures he’s been through. We’ve often noticed he needs more pain relief than they expect and William’s team at Birmingham are fantastic at keeping him well monitored and comfortable. Now we know, we can make sure this continues. We’re slowly learning how to cope with his ‘meltdowns’ and make sure his autism has the least impact on his life possible. It has its moments though!

William’s serial casting and operations for his feet deformities were successful which is fantastic.

We are working harder with his physiotherapy and OT at the moment to help him make the best of his abilities.

Overall, we’re having a few challenges but he’s happy, the girls are happy, and that makes Mummy happy.

William loved his space sticker book – space is one of his fascinations. Thanks so much. He really appreciates everything people send him and loves getting post. All the children do.

Update 27th February 2010

Wills is having an operation on both feet on Wednesday and is really upset about it. He will probably only be in hospital for a day but he is terrified about ‘special sleeps’ and is really unsettled because of it. His Asperger’s Syndrome makes it really hard for him to understand and come to terms with the idea of medical procedures coming up.

He is back in plaster casts on both legs now and will be in casts at least 6 weeks after the surgery. It is likely he won’t be allowed to walk on them initially.

We’re going to Birmingham on March 18th and may be told then that he’ll need a big operation to re do his stoma. It is prolapsed and it’s a matter of time before this has to be done but he’s very anaemic at the moment and this may signify that the bleeding caused by the prolapse is causing problems. I’m really hoping we can get away without the stoma operation for a while with him having to have the feet operation next week.

Other than some coughs, colds and flu over winter, he’s had a good run over recent months, but could do with some smiles over the next few weeks.

Update 3rd February 2010

Wills continues to do very well after his transplant. We have had a difficult winter in terms of how often he’s been unwell with colds and a possible bout of flu but, thankfully, this has only led to him being miserable and grotty. We have been able to manage it all at home.

We still have the uncertainty as to whether or not he’ll need his illeostomy re-forming because it is prolapsed and covered in sores. Each time we go to clinic in Birmingham the decision is put back to next time as it will be a major op and could unsettle what is currently going so well. It will have to be done eventually. Wills is working hard with his physio. We are still exploring the diagnosis of asperger syndrome – something that makes it difficult for him to cope with the change in routine being unwell brings and can cause a lot of upset. The girls find it hard too. Wills is fantastic though and the little ‘quirks’ this syndrome gives him only really help to make him the little boy he is.

It’s been a hard start to the year because we lost a close friend who died after transplant. This has unsettled William and made him realise that a transplant comes with complications that are not always conquered. A lot of children we know who had small bowel transplants several years ago are struggling now, some needing another transplant. This reminds us to enjoy every precious day we have with William.

We are looking forward to spring now and hoping we, and other Pals, have a settled and stable time ahead.

Thanks for all the smiles the children have had these last couple of months. I think our December update was lost in transit and I don’t want to repeat everything but will say again thanks so much to the children’s elves, especially the lovely ones who put in a few pampering bits for Mummy, much appreciated. The children had some very kind and thoughtful gifts and we are so grateful for everything.

Thanks so much Maria and Michael for the smile box. It came when we were all very sad after losing a close friend and cheered the children up no end (and so me too). Thanks to Milly and Alice P for the fab face paint kit. The children have been very creative, especially transforming William into a super hero, and we’ll send you some pictures with some bits we are sorting for you.

Update 30th November 2009

We celebrated William’s first transplant anniversary on November 20th. Our thoughts were with our donor and her family while we thought how well Wills has done this year and how far he has come. He is doing really well. The hardest thing for me to cope with this month is that, as his health is less of a worry (at the moment at least as I always have to say that as things can change very quickly for transplant patients) attention is turning to his other problems. One of William’s hugest achievements this month is that he is drinking fortified strawberry milkshakes (scandishakes) in the day time and is not attached to any tubes in the day for the first time ever in his life.

I was hoping William would be able to start main stream school now but had a difficult parents evening when it became clear to me that his physical disabilities, caused by his cerebral palsy, still need a lot of input and that it is becoming clear that he has high functioning Asperger’s Syndrome. The Asperger’s explains how distressed he can become at times and means that we will have to work harder to prepare him for hospital admissions and procedures. On balance, William is best remaining in the school he is in for now and we are lucky we have such a fantastic school for him.

The girls have found it difficult to accept his wider problems as they feel it is all so unfair. They could do with some smiles. I always knew he had a syndrome and this is all part of it. We are just so happy and thankful that we have him, he is alive and he is incredibly bright, intelligent, sociable and charming. Asperger’s Syndrome is very much misunderstood and doesn’t deserve the somewhat ‘taboo’ reputation it has.

We are looking forward to our first Christmas at home together in four years and hoping William stays well. I hope all Post Pals children, families, pals, staff and supporters stay as well as they possibly can over Christmas and everyone has a very merry one.

Thanks this month to Post Pals for the lovely first transplant birthday card. As always, we love hearing what people are up to and it is always lovely to hear the news from Maria and Michael.

Update 4th November 2009

I am sorry we haven’t updated for a while. I thought we had last month. I have been crazy busy with a campaign to raise awareness of organ donation to save the life of a 20 year old girl who will die without a transplant. It snowballed and I haven’t really had much time to think about anything else. As always though, we really do appreciate the cards, letters and gifts that so many wonderfully kind people send the children.

William is doing really well at the moment. He has just had his legs in casts for 5 weeks to help soften up a deformity in his feet. He was a little star throughout the process and can now walk with his heels down. We are waiting to see what happens over the coming weeks and whether or not he will need a little operation to release the tendons in his feet.

It is hard to believe that it is nearly a year since his transplant. He has been really well but we are not yet out of the woods. They don’t relax until 2 years after a bowel transplant so we are half way there. He may need further surgery on his stoma in the coming months. He’ll have a surgical review at his annual review in a few weeks time. This will be the first winter he has been home after his transplant. As he is very immunosupressed, I hope he doesn’t struggle with the bugs that love this time of the year.

Family life is the most settled it has ever been. I just hope it lasts for a nice long time. The best news is that William is beginning to relax and enjoy food for the first time in his life. For now, it is just strawberry fromage frais, milk shake and lollipops, but it is a huge start as he wouldn’t put anything in his mouth until recently and, as he was nil by mouth, never learned the skills as a baby.

Thanks for the lovely Halloween cards this month. We also always love hearing what people are up to and William loves hearing all about Michael. Thanks so much for the Halloween things and for William’s lovely red scarf. It looks great and will certainly keep him warm.

Update 3rd July 2009

William is continuing to do really well following his transplant. His stoma is a bit of a mess and he will need further surgery over the coming months. He is very traumatised by ‘special sleeps’ so we are waiting until he has had time to work on his fears with a psychologist. Now William’s health has settled, working to reduce his minor disabilities from his cerebral palsy has become a priority. We are waiting for him to see an orthopeadic doctor to start the process of serial castings and tendon release to help his walking. This will be painful and unpleasant but worth it in the long run. William has complex issues so there will always be things on the horizon for him but he is so happy to be well after his transplant and it enjoying life to the full. It is transplant awareness week on July 5th. Please do think about joining the donor register and tell your family and friends about children like William whose lives are saved by that special gift.

Thank you for our post and for Hope’s birthday cards and the cards to wish William well as he re-starts school. Special thanks to Maria and Michael who write to us so often and for Hope’s lovely birthday present. It means a lot and we love hearing about what you are up to.

Update 19th May 2009

It has been another great month for William. There are a few blips though. The main concern is William’s stoma that is pretty badly prolapsed. The better he feels, the more knocked around it is getting and there are now a lot of sores on it that can bleed. It may be that Wills will need another operation to re-do the stoma. We are hoping not but expecting that this will be on the cards in the coming weeks and months.

William is on fantastic form and is better than we had ever dreamed he would be after his transplant. He does have the odd day when we being to wonder what is going on and these serve to remind us that a transplant is not a cure but a new condition really. It is still fantastic because I am not sure William would still be here if it were not for the wonderful gift his donor and the family gave to us. The anti-rejection drugs are causing William to have diabetes and that is generally stable on two insulin injections a day but can prove to be a bit tricky from time to time and he may need to have more injections with feeds.

Wills has begun to eat which is fantastic!! He eats fromage frais but only when he is being gently bribed at the moment.

All in all, things are great and it is so nice to be a stable family at the moment. We know there will be a few more ups and downs yet though, but we were told to expect them over the first couple of years after transplant.

Thanks for all the lovely Easter cards. They were very much appreciated. Thanks for the notelets for Hope and Ellie, the magic eggs and all the lovely Easter gifts and craft sets the children received. They were very much appreciated as we enjoyed our first celebration time together after William’s transplant.

Update 8th April 2009

I think this is the first time I have ever written this in an update – William has been well all month! He has had a fantastic month and is doing really well at the moment following his transplant. The only slight concern is that he had to increase his insulin injections for diabetes to twice daily and may need to begin having additional injections with feeds. He is really brave for all his injections and blood tests though. He is putting on weight so well that we had to decrease his feeds. He really is doing so so well. We are now working hard to increase organ donor awareness in the hope that others may get the transplants they so desperately need as soon as possible.

It is still early days for William and I have to try not to get too carried away with how things are going now as we have been told to expect ups and downs in the first two years.

William is still in isolation at home and so is really enjoying the craft packs and things to do. The children are loving their Easter post. We were hoping to go away to our hospice for Easter but had to cancel as someone there has chickenpox – something very dangerous for William. With three children having to stay away from civilisation for two weeks, we are really grateful for the Easter make sets, colouring sheets and for the notelets Hope and Ellie have received. You can expect some rather classy thank-you letters coming your way.

William will remain in isolation until the end of May and will continue to have weekly blood tests. He will have a short admission in Birmingham at the end of May and, if there is no rejection, he will then be able to take his new tummy into the big wide world again.

Update 23rd February 2009

William is now home again after a nasty time with pneumonia and subsequent complications with his new bowel. All is going very well at the moment. We have a lot of hospital appointments and blood tests but, in between, William is enjoying a life free from intravenous drugs and being attached to a drip nearly all day. The next two years will have their worries and emergencies but we finally have a chance for some stability and normality in between.

William is drinking water but not yet eating. He has to learn all the skills and gain confidence so this will take a long time and involve a lot of hard work and input from speech and language therapists and psychologists.

Thank-you so so much to all those who sent cards, letters and gifts to William. Hope, Ellie and myself during the last three months since his transplant. We have been amazed by people’s generosity. I can’t begin to tell you what a huge difference it made for us all. It helped us to feel so very supported and cared about. The post has been the highlight of William’s day. We are writing to those of you whose addresses we have but have a lot to do in catching up with work and school work so it will take us some time. All William’s cards and letters are being put into a special scrap book that will be part of his transplant memory box.

Update 2nd February 2009

We had a great start to the year in that William had had his transplant and was doing well and we had a future to look forward to. We got home at the end of the first week of the month but things went downhill almost straight away. William was unwell at home and was back in hospital within 2 days with signs of a nasty infection. This turned out to be pneumonia and he had a very tricky time with it. He was on a lot of oxygen and there was talk of intensive care but, William being William, he fought hard and got better without any need for that. He picked up fast but, unfortunately, his new bowel struggled with him being so poorly and was beginning to look like it was rejecting. We were transferred back to Birmingham Children’s hospital for tests. Thankfully, he does not have rejection but his bowel is not being as effective as it was before he became so ill. We are still in Birmingham where the team are trying to work out what has happened and what to do about it.

Update 14th January 2009

William did really well and got home following his transplant. Unfortunately, our time at home was short-lived. He didn’t seem right from the very next day and spiked a temperature within two days. We are now back in hospital as Wills has pneumonia in both lungs. He is pretty poorly and requiring IV antibiotics, fluid drips and oxygen. We are hoping he will turn a corner quickly and are also concerned as infections can cause rejection, especially so soon after a transplant. Poor William has been through so much and deserves some good luck soon. Hope and Ellie are very upset as they were so looking forward to us all being together at home at last. We don’t know how long it will take to get to that day at the moment.

Update 7th January 2009

December has been an eventful month for William. He received the special gift of a new tummy (small bowel transplant) on November 20th. He did very well initially and was quickly out of intensive care. However, he then had recurrent problems with blockages in his new bowel and had two further operations. His bowel was slow to get going and we spent many anxious days. Things took a big turn for the better towards Christmas and his bowel began working well. He was slowly weaned off the intravenous feed that has been keeping him alive for the last three years as he became able to tolerate a special feed delivered into his tummy through a tube. He is allowed to eat but has not learned the skills he needs to do so. That will take time. William has continued to do well and we are hoping to go home in the next few days. He has some problems with his stoma (where the bowel comes through the skin) and there is a chance he will need further surgery in the near future, but we are hoping things will sort themselves out naturally.

Due to the high amount of steroids and anti-rejection medications needed immediately following a small bowel transplant, William will not be allowed to mix socially, go to school, or go to shops or busy streets for another four months. He will have frequent hospital visits, blood tests, and short hospital stays over the next two years and may need readmission to hospital if he catches any infections or viruses or experiences any rejection. The fist two years post transplant are the most vulnerable. For now though, he is better than he has ever been in his life and, apart from three one hour bolus feeds a day and an overnight feed, he is finally free of lines to really get exploring his world.

Thanks for all the lovely get well and Christmas cards William and the girls received. William looked forward to the post every day and the girls really appreciated being thought about.

I do want to say a few special thank yous. Thanks for William’s fantastic Thomas night light and torch. It has never left his side and was the only thing he was interested in when he was really unwell. He even holds it in his sleep. Thanks for the Thomas DVDs sent for Christmas. I let him have them early as it was just what he needed when he was unwell. Miraculously, they were ones he hadn’t got and some new Thomas episodes were a welcome escape from the constant medical attention he needed. Thanks to Becky for making him a fantastic Thomas pillow case. It has only been off for washing.

I must also thank those who sent Mum a little something to cheer her up. Thank you for the parcel of washing things and chocolate. It was a lovely surprise during those early worrying days. Thank you for the beautiful candle for Christmas. I can’t wait to light it when I get home. Thank you so much Munira for the wonderful flowers you sent at Christmas. The turned my bare hotel room into a home for myself, Hope and Ellie over the Christmas period and filled it with a lovely scent.

Thanks to our wonderful Elves. The children were absolutely thrilled with their elf boxes. William loved all his Thomas things and I had very excited phone calls from the girls to tell me about their elf gifts. The children shared the other elf and opened the box together on Christmas Eve. That was a lovely time for them all to be doing it together and they were all chuffed to bits with the gifts.

We have been totally astounded by the generosity of strangers during this time in our lives. William will be isolated at home for the next four months so all those books, colouring books, sticker, craft kits etc will be very much valued for the long weeks to come.

Update 29th November 2008

What an exciting end to November we had! William had his call for transplant on 19th. It all happened in a very dramatic way as he was on the operating table about to have another emergency procedure. He had his small bowel transplant on 20th November. Since then, we have had our ups and downs. Things seemed to be going very well at first but, over the last few days, William’s new bowel has stopped working. We are not yet sure if he will need further surgery or if we will just have to be patient and hope it gets going again. These are early and anxious days. I am updating our blog at www.sarahmilne.blogspot.com each day so you can follow William’s progress more closely there.

Thanks for all the post. It is certainly helping keep him going at the moment. They have a very organised post system here and William looks forward to post time with the hope he will have something. He loves reading his letters and cards and enjoys all his gifts. He really appreciates everything and, with the prospect of several months in isolation, Post Pals is really coming into it’s own for him right now. Hope and Ellie appreciate all their cards, letters and gifts too. It is an anxious time for all of  us.

Update 21st November 2008 (10pm)

Thanks for all the lovely comments and text messages. It is wonderful to know how much support we have. William is doing really well and is out of intensive care!! He is such a little fighter. He is still in a lot of pain but is nodding and shaking his head and saying the odd word here and there. He is sleeping most of the time but we have had a Thomas story and he has snoozed through a couple of videos. I will tell the whole story but I know people are anxious for the latest news for now. Wills is taking his nystatin medicine orally and loving how it tastes!! It is the first thing he has taken in his mouth for 3 years!

Update 21st November 2008

All has gone well with William’s transplant and he is out of intensive care!

Post can now be sent direct to the hospital (address above) as he will be here for 3 months.

Update 19th November 2008

William got his ‘call’ at midnight and was transferred up to Birmingham Children’s hospital. He went into theatre at 8am and is getting his transplant!!

Update 1st November 2008

William has spent the whole of October in hospital. He has been battling with recurrent infections in his Hickman Line. Just as we were hoping to be home soon he started another infection so we will be in hospital for next few weeks at least. It is a very difficult time for us all as Hope and Ellie are away with their Grandparents. We are all missing each other very much.

William’s post has really cheered him up. Thanks to everyone who has sent us lovely cards. They are brightening up the wall in William’s room. He loves reading letters and hearing all about the people who write to him. Thanks for all the lovely presents too. It is great to have some new bits and pieces to entertain him with as he gets very fed up. Thanks Dylan and Seren for the lovely Thomas game. We have had loads of fun with that. Thanks Post Pals for the lovely books and parcels. A wind up nose made him laugh for ages. Thanks to everyone else for the colouring books and stickers. A jumping smiley face makes William laugh and laugh. I have been forwarding Hope and Ellie’s letters, cards and gifts and I know they really appreciate them, especially during challenging times like now. I’m sorry for not thanking everyone by name. I am so scared I will miss someone but we do know who you are and will write thank-you letters to those whose addresses we have. Our mail helps keep us going.

I hope we will be able to report that William has had his transplant soon.

Update 30th September 2008

Further update – we are back in hospital with another line infection. We will be in at least 2 weeks.

Hope is missing her French exchange and is having an especially hard time.

Update 29th September 2008

William came home from hospital just in time for his first day school. He has made a really good start and progressed to full time days within the first week. He is learning to read quickly and has read through most of the first stage of the reading scheme already.

William’s energy levels are noticeably down on how they were and we can see his health is deteriorating. However, it has been wonderful to be home together. We have made the best of it. Unfortunately, after only 3 weeks at home, William is a bit unwell at the moment and we are waiting to see if he has yet another infection in his Hickman line. We expect to be back in hospital tomorrow and my parents are on standby to collect the girls. This is especially devastating for Hope as she was due to have her partner in her school French exchange staying with us next week. It looks like she will now have to drop out of the programme. All her friends are doing it and she is bitterly disappointed. It is very hard for siblings. Their lives are forever being thrown into turmoil and they miss out on such a lot. We all hope William receives his transplant as soon as possible.

Thank you to Julie for the postcard, letter and badge from Cornwall. Thanks to Maddie from Crafting Friends for the beautiful card. Thank you Post Pals and Moonpig for a lovely hello card. Thanks everyone for the lovely letters, we do love reading them. We’d also like to thank Viks and Post Pals for the fantastic bouncy castle. William has had a lot of fun on it. Thanks to those who sent William gifts this month. Thank you Maria and Michael, he loves his Thomas the Tank Engine story CD, it is on most nights as he goes to sleep. The girls loved their goodies too. Thank you everyone for the colouring books, stencil set and stickers. William loves them all. Thanks also for the chocolate buttons for Hope and Ellie. They were very much appreciated. Sorry for not mentioning everyone by name, I am so scared I’ll miss someone who will then feel hurt! Thanks to you all though. William gets so excited when he gets letters, cards and parcels and is cheered up loads by them when he is having a bad day and so do Hope and Ellie.

Update 11th September 2008

William finally came home from hospital at the end of last week. It is great to be at home together and we hope we will be home for a few weeks at least. We are not so sure though as William is not all that great. He is in a lot of pain and discomfort and his poor little tummy is huge and gassy. He has very little energy these days and can only manage to play in short bursts with lots of frustration and cuddles in between. It is hard to watch as he has gone down hill a lot in the last year with all the infections he has had. We will stay home unless he becomes dangerously ill with another infection. In the meantime, we are waiting to get that call to say a new bowel or ‘new tummy’ as William calls it, has been found for him. Everyday I hope and pray it will be today.

The girls are also home and we are all enjoying being together. We still have our Post PalThorpe Park trip to look forward to and the girls and I will be going for some much needed girlie time. William starts school next week. He is going to a special needs school for children with physical disabilities and will have one-to-one support throughout the day. It has been a huge job to get all the arrangements in place and it has all come together just in time. He is really looking forward to it. The only difficult thing is that they don’t want him to finish his TPN dose at school as flushing the line is an infection risk. This means we have had to adjust his TPN time to go up at 8.30pm and come down at 4.30pm. This means poor Wills is attached to his line right up until the end of the afternoon and only has a couple of hours free before bed. He is not very happy about this and it is taking a lot of energy and imagination to keep a tired, sore and frustrated small child tied to a line happy and busy all day.

Update 31st August 2008

William spent the whole of August in hospital with recurrent infections in his Hickman line. This is because his intestines are now leaking all the bugs into his blood and they are breeding in the line. This is a very dangerous situation and, because of this, William was assessed for his transplant at the start of this month and we received the recommendation that he be accepted for the waiting list for a small bowel transplant. We are now waiting for a suitable organ to be donated. We are starting September still in hospital where William is now recovering from his infections and has had a new Hickman line. We are hoping to be home soon and that we will be able to stay at home long enough for William to start his first year at school. He is really looking forward to going.

Thanks to everyone who sent cards and postcards. William really loved opening his post and was very much cheered up by it all.

The cards and postcards brightened up William’s room in hospital. William loved all his cards, especially ones with Thomas. He loved the colouring in too. Hope and Ellie also loved their cards. Thank you all so much. We will try and write back to those who sent their address. Thanks also for all the letters. Special mention must go to ‘Percy the dog’. William laughed and laughed at your letter and still asks for it to be read and re-read over and over again. Thanks so much for the little clock work dinosaur. It cheered William up on a very down day. Thanks also for the stickers, bubbles and magic drawing slate. Every little gift William received was immediately put to great use and played with over and over again.

This is our first hospital admission since being a pal and all the posty made such a huge difference to William.

Update 24th July 2008

William currently has gall stones, caused by TPN related liver disease and failure of his intestines to clear the bile. He is a bit jaundiced, sore and uncomfortable from this, but still smiling as ever. He will need another operation to remove his gall bladder but his team wants to assess him for transplant first.

We are going to Birmingham Children’s Hospital for 2 weeks from the beginning of August for William to be assessed for a small bowel transplant. This will be an intense fortnight for us all with lots of invasive tests for Wills and difficult counselling sessions for Mum and Dad.

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Rowan S

18 June 2012

Please DON’T send food to Rowan or any of his siblings, and NO LATEX i.e. balloons, rubber masks etc, as Cameron is severely allergic to latex, so please do not send anything containing it to the whole family.

Story written 2012

Rowan was born at home unexpected but on time. Apart from being told we were having a girl (and he was a boy) and he was cold due to being born in the bathroom with the windows open, the midwife said to his daddy that all was “normal”.

For the first six weeks of Rowan’s life it was a whirlwind of no feeding, force feed, trialling formulas, projectile vomiting and screaming, along with a complete lack of weight gain. This carried on for 18 months. They tried an ng tube, force feeding, an nj tube, surgical jejunostomy, solid foods, ANYTHING to get Rowan to gain weight and nothing worked. Rowan was under GOSH as well as our local hospital and no one knew what to do. At 18 months old and weighing just 9lb12oz, Rowan was admitted to GOSH and we were told to “expect the worst”.

The next 8 months GOSH was home, full of ups and downs. Rowan had a Hickman line inserted and started TPN. For the first time ever Rowan began to gain weight consistently and went from strength to strength. As this happened a lot more medical problems began to arise. Rowan had to undergo a huge number of tests to get to the root of his weight problem and these tests are still ongoing. Our biggest battle will always be with his calorie requirement. The average child needs 90 calories per kg. Rowan needs a minimum of 240 calories per kg. He has the same number of calories as a fully grown man.

Rowan emerged from GOSH almost twice the child he was when he went in. Rowan has a lot more energy, a huge personality, and is making huge leaps in all areas. As I write, Rowan is awaiting more tests at GOSH and his calorie requirement has increased. Rowan may be the size of an 6 month old, but he has defied the odds, fighting his way through life with a very cheeky grin and a little bit of attitude!

Update 12th September 2019

Rowan had his central line removed yesterday, and a port inserted.  He’s no longer on TPN.  And while he’s still ‘poorly’ and in pain etc quite a lot, we have had lots of conversations, and decided there are children much poorlier than him, and he’s decided to move on from post pals and allow another child the delight of happy post.  He’s sad he’ll be moving on, but he knows it’s the right decision to make.

Thank you to everyone for all the memories, all the opportunities, all the parties, projects, letters, cards, pictures and the amazing opportunity to stay at chessington.  We’ll be sad to go, but happy someone else will be able to have the opportunity to smile when it feels like there is nothing to smile about!

A special thank you to Bev, Kim and Stevie, Marty Longo and Sarah and Fudge, for just being awesome!

Update 7th November 2018

Sorry it’s taken so long to update on Rowan, time goes by so quickly sometimes! On the whole Rowan has been quite well. Rowan is now on hydrocortisone as he has added Multiple Pituitary Hormone Deficiency (MPHD) into his list of ‘issues to contend with’ and will be on steroids for the rest of his life, it’s just another risk to manage. We have been back in hospital more recently to check that the level he is on is correct.

We have had a couple of other admissions around central line infections, infections around the various ‘holes’ in his body, and we are currently battling with one of those right now. Rowan is colonised with Staph Aureus, however that has now become MRSA. He’s struggling a lot with pain and fatigue, and it’s hard to know if this is deterioration in his management, due to the infection, or if we need an increase in meds, as he’s finally growing like a weed!

Behaviourally and emotionally however, we are finding things very difficult. Rowan has seen a psychologist and we are trying to work with him, however it looks like he is emotionally ‘stuck’ at a 3 year old stage. Imagine toddler tantrums in a 9 year old, he has a lot more weapons in his armoury than a 3 year old though unfortunately! This has also meant, that despite not being developmentally delayed in any way, he is torn between playing with younger children’s toys, and age appropriate toys. He seems to currently have a real liking for toys where you press a button and it lights up/makes a noise. He also is very attached to his baby Michael.

Thank you to those who have sent Rowan post, I know we don’t post as many pictures as we usually do, things are just particularly difficult at home at the moment, especially with Ayden, possibly struggling with ADHD/ASD, we are waiting for assessments. He has a habit of running off, with no consideration for danger, so it’s particularly difficult. We want to say a massive thank you to Sarah and Fudge the cat, who always sends the BEST monthly projects!! Also to WendyWoo for the fantastic drainage bag covers! Rowan loves having such a wide range of choices now! Also, to Marty Longo, Rowan loves the consistancy of receiving cards from you, from such a long way away! Rowan has also been receiving letters from a little girl who goes to ‘pen pal’ club at school, and he has written back to her, and received another letter! We are hoping to write another letter to her over the weekend. It’s nice to see him excited to write to another child of a similar age! Thank you post pals for everything you do for all the children.

Update 15th October 2017

Generally Rowan is doing ok!  Since the stoma prolapsed in June we have had lots of issues with controlling his sodium levels and his output being really high and of not great consistency.  Literally this week his sodium levels are FINALLY where they are meant to be, we had to increase the sodium in his TPN twice to get it to work, giving him sodium supplements through his tube seemed to do nothing.  I was more than a bit gutted as I thought we could start weaning down the TPN a bit soon, but I don’t think that’s going to be happening for a little while.

Rowan also appears to be colonised with a fungal infection, Candida and no matter what we treat it with, it’s not going away.  The risk is that this translocates to his Hickman line, and Candida is one of the worst bugs to treat :(.  So he had a specialist swab done to see exactly what we can use to treat the infections, as he has more than one strain of the bug, and go from there hopefully!

Over the summer we spent 3 weeks in hospital with a very poorly Rowan, he had a line infection Klebsiella, and it was very scary for everyone.  He ended up in the critical care unit in Oxford as we transferred from the hospice.  From there we made it to our local hospital only for him to deteriorate again :(.  Rowan was really upset, as were his brothers, as it meant our days away had to be cancelled, again.  So it wasn’t a particularly great summer, but we made the most of it where we could!

Following this particular bug, it was noted by the hospital that Rowan has some really bizarre issues with Tachycardia that have developed.  We’re not sure what this is all about at the moment but we’re keeping an eye on it for now!

In the meantime Rowan is struggling more emotionally than physically.  He’s angry a LOT.  He’s struggling with his pain levels as he is not listening to his body, and his fatigue is also an issue as he’s refusing to rest.  He’s hating being small.  He doesn’t want TPN or feeds, or having to go to the hospital anymore, and he currently doesn’t like school.  Everything is a battle at the moment with lots of tears.  He’s even playing up in school.  We are waiting for play therapy but at the moment we won’t even seem to be on a waiting list anywhere.  Everything is so slow, and at the end of the day it’s only going to get worse if we leave it.

Thank you to those who send Rowan post, especially Sarah and Fudge, Kim and Stevie and Marty Longo, also thank you to Zara and Raffle pals for the amazing gluten and dairy free chocolate hamper!  It went down very well and caters to the boys dietary requirements really well.

Can people PLEASE not send food to us.  The boys ALL have food allergies, and I have had to confiscate a number of food/sweet items from them.  Can we also make sure NO LATEX is sent, this includes balloons (unless they are foil).

Update 15th February 2017

This month Rowan has been doing well. Lots of appointments over the last 6 weeks or so, endocrine say he is growing ok now he’s on growth hormone and even though he still isn’t on a centile for his height he’s in proportion with his weight and that’s the most important thing. We will see them again in six months as we’re having a few issues with his blood sugars dropping too low when he’s not on his TPN (he’s getting 5 hours break currently!) and him becoming extra tired and grumpy, but for now it’s a case of just watching and waiting.

We went to see the gastro team as planned and we really wanted them to reduce the amount of TPN Rowan is on, but it wasn’t to be. They have decided, this close to surgery, we need to just stay as we are, as he is currently stable and we don’t want to rock the boat, plus, it’s possible we will be back to 24 hour TPN temporarily and we know the amount he’s on currently keeps everything ticking over nicely.

Rowan is due to have Ileostomy surgery on the 1st March. He’ll be in Great Ormond Street for approximately 2 weeks. This is quite big surgery for Rowan, and the recovery time can be rough, as well as adjusting to a new way of life. However, we are hoping this will improve Rowan’s quality of life long term and the aim is to reduce the TPN, and hopefully one day, get him off TPN altogether.

Thank you so much to everyone who sends Rowan and his siblings post!! Especially Sarah and Fudge the Cat! If anyone has sent Rowan little Lego sets, or craft sets, we have saved them for when Rowan goes for surgery as these are perfect for those times when he is bored. During the recovery for the next surgery, I am hoping the post he receives will lift his spirits. Thank you to everyone for everything that is sent!!

Update 28th January 2017

Since the last update, Rowan was transferred to GOSH by blue light and was incredibly poorly. In the end they took his line out, and replaced it with a new one. Unfortunately due to a lack of central venous access they have had to use Rowan’s femoral vein. This also means he only has ONE vein left in which a Hickman line for TPN can be placed. This is not a good situation to be in. Rowan is currently dependent on a Hickman line to sustain his life.

Since September we have tried to carry on life as usual and not worry too much about the ‘what ifs’. We had a week at Helen House in December, which was rather more hard work than it should have been, and some of Rowan’s pain medications were adjusted to help him, however we had a lovely Christmas at home together which we are very grateful for, and thank you so much for the all fantastic elf parcels, reindeer letters, monthly projects and post that came. Rowan has also been trying an extra hour a week at school for enrichment time which he absolutely loves!! This takes our total up to 16 hours a week of school, the most he has ever been there!!

Since the beginning of the year we have been waiting on tenterhooks for a date for a large surgery for Rowan. Nothing can really change or move forwards until this surgery has been completed. He is having an Ileostomy placed. This is a step that hasn’t been taken lightly at all. Neither Rowan nor I are adjusting to the news very well. Surgery will now be in March, after a lot of messing about, we still don’t have an exact date. This will be a massive adjustment for Rowan, and he is currently finding the idea more than a little but upsetting. The admission to GOSH is likely to be 2 weeks. As always though, post pals post gives him something else to focus on, and to distract him from it all for a little while! So thank you!!

Update 9th September 2016

Late last night Rowan was transferred to HDU. He was very poorly for most of yesterday, he drifted in and out of sleep until the middle of the afternoon. He wasn’t eating or drink or talking or even sitting up. He didn’t even have the energy to boss anyone around. Constantly spiking high temperatures despite IV paracetamol, and being on day 5 of antibiotics. Last night we did bloods, and they came back not looking good at all. Although he did manage 90 minutes of crafting in the activity centre and a few rounds of Mario Cart with the pink ladies before becoming overwhelmingly exhausted once again.

So, he was transferred to HDU where he had a fluid bolus as his Blood Pressure was too low, and he had his antibiotics changed a little bit. So rather than having ones that are once a day, he has 3 that are once a day, and 1 that is 4 times a day, he is on gentamicin, teicoplanin, micafungin and tazocin, all IV antibiotics. He has complained during the night of a bad headache, which tends to go with a line infection, although we don’t usually have that for more than a day or so.

So we are now on day 6 of the line infection saga, and he seems to be deteriorating, not improving. If he doesn’t start to improve in the next 24/48 hours, there is talk of transferring us to GOSH. Fingers crossed these new antibiotics help a lot more, and put him back on track so he can start bossing people around again.

Update 14th August 2016

Rowan is currently an inpatient at our local hospital and has now been in hospital for 2 weeks.  His central line broke inside his chest causing a great deal of pain.  This meant we were in hospital on IV fluids awaiting a line change.  This happened last Friday, it didn’t seem to go to plan, with much larger incisions than previously, a new exit site, and lots more bruising and discomfort. Since then he has spiked really high temperatures.  After a week of testing and waiting for results we have found he has a really, really bad infection in his various sites and wounds.  We thought putting him on the right antibiotics at a high dose would sort him out, and we were hoping to go home ASAP. However, 3 days into these high dose antibiotics and he is still spiking temperatures despite regular paracetamol and ibuprofen.  This is not a good sign.  To make matters more complicated, his brand new line won’t bleed back, so we can’t keep an eye on whether this has spread to his line or not, and previous bloods showed his liver was struggling too.  Rowan is becoming more and more frustrated and downhearted. This is the summer holidays, he is meant to be having fun, many days out have had to be cancelled unfortunately, and he is getting more and more upset as time goes by.  As he has got older he is far more aware of his difficulties and right now he is frustrated with himself and his body that he isn’t getting better.

All we can do right now is wait until the right doctors are available at GOSH to find out what the plan is.  Being in hospital this long, unplanned, is taking its toll on everyone, especially Cameron and Ayden, who are being farmed out wherever possible or spending hours and hours each day at the hospital, missing out on their summer holidays and all the fun things we had planned have had to be cancelled.  We are really hoping things are sorted this week, as we’re meant to be going to the hospice next week for a break, a bit of touristy stuff, and some R and R.  We haven’t been for such a long time and are really hoping for a turn around this week.

Update 8th June 2016

After our hospital admission we continue on our rollercoaster.  Rowan’s weight is up and down, as are his pain levels and fatigue.  His reflux is becoming more problematic too.  While we love the warmer weather it wreaks havoc on Rowan’s body.  He is extra pale and extra tired, so we are waiting to see if they want to give him more fluids in his TPN.  Unfortunately, we haven’t made much more progress with his feeds, some days are better than others.  Progress is painfully slow with lots of side steps, but we’re doing everything we can!

We heard this week that funding was approved for Rowan to re-start growth hormone treatment, so we are just waiting to hear from the company to arrange this.  We tried it before and it didn’t work, but the team decided it was worth another shot as the difference between him and his peers is really really obvious now, he is a perfectly proportioned 3 year old, only he is 7!

On that note, I just wanted to say a HUGE thank you to everyone who sent Rowan a birthday card. I honestly think that’s the most cards he has ever had!  He LOVED them!  We went to West Midland Safari Park for his birthday and he had an absolutely fantastic time, it is his favourite place ever!  We are spending quite a lot of time busying ourselves with some fantastic days out, travelling around the country and we can’t wait to continue them especially now the weather is warmer!

Update 25th January 2016

Thank you to everyone who sends post, whether it’s a one off or regularly, every letter really does count.

Rowan just came home after almost 3 weeks in hospital.  It was a long, gruelling process, but we may be uncovering some more answers with Rowan’s gut.  We have successfully managed to reduce Rowan’s TPN hours to 20 a day, and with a small amount of feeds the other 4 hours.  It’s a huge achievement and I am so proud of Rowan. It does cause pain, and there is a lot of stomach distension and other issues, but we’re doing the best we can.

During this time the other children were in foster care and had a rough time too, but we are glad to all be back together. It will just take time and patience to adjust.

Post is instrumental for Rowan through the bad times of the week. It focuses his mind on something else for a few minutes, other than being uncomfortable and grumpy.  Thank you, again, for everything you do!

Update 25th July 2015

Rowan has been quite poorly but is finally over the worst of it. He still has a central line site infection which is driving us both insane! We have just got back from a 2 week admission at GOSH. We went for physio rehab and it was a very rough 2 weeks, but he has made some lovely friends and they bonded really well. However, apart from an improvement in his balance, I can’t see any noticeable difference in him. He also lost 1kg while we were there which was weight he didn’t have to lose! The gastro team have changed the plan to hopefully fatten him up again.

While we were away at GOSH, adaptations on our house began and in fact are almost finished. A ramp outside the front and a wet room have been installed. The through floor lift should be finished Monday, so I have been busy decorating Rowan’s bedroom and the bathroom… minions of course!

As always, Rowan likes to make life complicated. The theory behind him having no central access is that he has lots of little clots in his veins, preventing the access, which would also explain all his very prominent veins that have worsened over time on his chest/neck/face. He has also been suffering with headaches. All his blood work looked fine so it wasn’t dehydration or anything else. I decided to go and get his eyes checked, as sometimes it’s hard to remember the ‘normal’ things it could be when you have a child as complicated as Rowan! It showed that he has a small prescription but nothing worth worrying about. However, he has reduced 3D vision and his eye muscles are having to work extremely hard to focus, which is resulting in double vision when his eyes get tired. A referral to ophthalmology at the hospital is the result and I have to watch him on the stairs/kerbs/uneven ground.

As always, we try to live our lives to the fullest. We are going on holiday soon and I think we are all looking forward to it as it’s been a very rough few months!

Thank you to everyone who sends post. The post has been a fantastic distraction and a welcome reminder that someone out there is thinking of Rowan while he has been so poorly. It continues to be well received!


Update 4th July 2015

Thank you to everyone who has sent cards, letters and postcards to Rowan and his siblings. His favourites are Kim and Stevie, Sarah and Fudge, Marty Longo, and the ones he gets from various schools. Thank you to the amazing paper cutters out there who have provided us with 5 exceptional pieces of art! I can’t wait to get them hung on the walls!!

Rowan continues to battle infection after infection. He recently had to go to GOSH for an urgent line replacement, however this did not quite go as smoothly as it should have. Rowan is lacking central access, which in theory he shouldn’t be at all because he has only ever had 2 lines. This is another part of the Rowan Puzzle. Since then we have managed to clear the infection from his line, however we have a persistent line site infection. Rowan’s new line site is also infected and it’s extremely sore. The stitches had to be cut out over 5 weeks early due to the swelling and infection making the situation unbearable. This then makes him extremely tired and struggling to maintain his body temperature with him just wanting to constantly nap. He has now missed 4 weeks of school and he is getting very down and very sad and he just wants to go to school. Unfortunately he just isn’t well enough and the couple of times he has tried they are phoning me after an hour to go and get him again.

We have just arrived home from a few days at the hospice where Rowan had his nails painted, went in the spa bath, and generally caused chaos (as usual)! This meant that I could go out for my birthday – the first time I have been out in 2 years for a few hours. It was just in time as we are heading to GOSH on Sunday for 2 weeks intensive physio rehab where we are hoping to gain some strength and muscle tone. It means another 2 weeks off school, but he should be good for the last 2 days of term. He will be saying goodbye to the best teacher I think he could have ever wished for.

Update 2nd May 2015

The last 8 weeks or so Rowan has been really quite poorly. Something as simple as a bug evolved into bacterial tonsillitis, which then manifested as referred pain. He then had a line infection, which required 2 weeks of antibiotics, and an urgent blood transfusion.

Hopefully Rowan is now on the mend after his weight plummeted to less than 12kg. We went to clinic this week and rather than discussing an Ileostomy as everyone believed that was the next step, the motility consultant said no. Therefore that is now not the plan, and the plan is, no plan. How we are right now, is the plan. It’s far from what I anticipated, as the simple answer is that they just don’t know what’s wrong or what’s going on, or which non invasive tests they can run to find out. The results from January do show a problem, but at this particular moment in time it’s irrelevant as he is still un-feedable. It was all a bit of a shock!

Rowan had his birthday last week and was a very lucky boy. Thank you to all those who sent him cards and presents! He had a fantastic day with his friends at his first ever birthday party. Friends and family came from all over the country to celebrate and he thoroughly enjoyed himself. Thank you for making his day extra special.

Update 26th January 2015

I just wanted to start by saying a big thank you to everyone who sent Katrina, Cameron, Ayden and Rowan, Christmas cards, letters, gifts, reindeer letters and elf gifts. I know a lot of time, thought and effort went into those and we thoroughly appreciate it.

Rowan has been very up and down with his gastro issues, one day he is ok and the next 4 days he is in agony. As always, he faces things with a smile and a determination. He wanted to try Turkey on Christmas day, so, along with the festive spirit I plated some up for him. Unfortunately it didn’t go too well, but you’ll never know if you never try.

We started 2015 with a 3 week admission to Great Ormond Street Hospital. It was a planned admission, but also a very difficult admission for all involved. It requires lots of communication and lots of organisation which inevitably went very wrong some days. However, despite the tortuous pain Rowan had to endure for the first week, we made it through, although he is clearly still considered ‘unfeedable’ and therefore for now TPN is his life line. He had a brand new gastro test, which has some very interesting preliminary results, which are beginning to show what is happening in Rowan’s system and how completely unique that is. Once the official results are in, it’s time for conversations as to what happens next and what our options are.

The third week we were handed over to the endocrine team for some repeat tests. The main aim was to see if Rowan could manage any time at all off of his TPN, to be free from so many wires, and be able to ‘run around like a hooligan’ as Rowan put it. The short answer to that was no, but again we need to wait for the official results.

The pain team also came to review Rowan and he is now a very proud owner of a TENS machine. He absolutely loves it and it really helps with his back pain especially.

For now we readjust to family life once again, and begin the painstaking task of trying to get Rowan to regain the 1.3kg he lost in those 3 weeks. Hopefully the next time I update there will be a more concrete plan in place.

Update 10th October 2014

Last time I updated Rowan was due to go to GOSH. We arrived there and due to Rowan’s haemoglobin level being too low the whole admission was cancelled. From there on it snowballed; by the Friday of that week he was admitted to our local hospital as he had a temperature which then transpired was quite a nasty line infection. Obviously this causes great concerns as line infections are a huge risk. Rowan spent that whole weekend in hospital and started IV antibiotics and had several fluid boluses as well as a blood transfusion. The next 2 weeks were filled with hours each day infusing IV antibiotics and drawing them up, mixing them, as well as ensuring all his blood work remained stable. It was a very demanding regime.

Rowan finished the antibiotics on Saturday and by the early hours of Monday morning he was feeling unwell again. Today (Friday) Rowan had to be collected from school early and taken to hospital. The bug is back that he had at the beginning of September. So once again we resume the very same regime of IV medications to hopefully make Rowan feel a lot better, and hopefully get rid of this bug well and truly.

Rowan has now been septic for almost 2 months solidly and it’s taken a toll on him, he is sick of feeling rubbish and missing school, and he is also getting frustrated that he physically can’t do as much. He has lost strength and stamina in his muscles and this is causing lots of problems for Rowan, but as always, he approaches each situation with determination, a big cheeky grin, and just a pinch of attitude.

Thank you for Rowan’s post. Rowan now recognises Marty Longo’s post without even having to open the envelope and he is always excited to receive post from Kim and Stevie. Please can I remind people not to send balloons to us though as Cameron has a latex allergy.

Update 22nd August 2014

Rowan has been on 24 hour TPN now for nearly a year. It’s been hard work, they still can’t get his levels right, this time his potassium and sodium are very low. He also had a line infection a few weeks ago and he was really quite poorly in hospital but he bounced back quickly and we managed to go on holiday with Mummy doing the gruelling IV regime. As it stands at the moment we believe Rowan isn’t absorbing any of his medicines anymore either. His pain has increased dramatically recently and a day out to GOSH took 36 hours to recover from. Our first trip to the hospice was fun, but again they commented how uncontrolled his pain was, so they are trying to get us some help with that. It took Rowan 48 hours to feel better after being at the hospice, he really wasn’t too good at all!!

Post helps more at these times than you can imagine, as a distraction and as a reminder that people are thinking about him. The excitement sometimes overrules the pain for those few minutes. Katrina, Cameron and Ayden also thoroughly appreciate their post. They know that although Mummy is often very busy with Rowan, they do have something for themselves, and will take themselves off somewhere quiet to play with their little gifts or read their post.

Thank you to everyone who continues to send post to Rowan. He will be back at GOSH on 15th September for a few days for some more tests. At the moment I hope they find something, that a test comes back abnormal, so that we can help Rowan, in some way at least. There is currently no option for him other than 24 hour TPN. No forward plan as they still can’t work out what’s going on, but he is definitely unfeedable. Despite all this he adapts and faces most days with a smile and determination. Thank you for still posting to Rowan.

Update 9th August 2014

Rowan has been doing ok since the last time we updated. Still struggling with his pain and fatigue but working on getting a good balance for him. We have been concentrating on living life for the last few weeks!

We went to GOSH for the endocrine admission and it all went a bit wrong, and as no one was prepared to risk Rowan’s safety, obviously, we are rebooked for the 14/9 to do things a much safer way. Rowan’s MRI was, on the whole, ‘normal’. There were a few abnormalities but nothing we didn’t know already. So he is booked for a nuclear medicine test.

Rowan had a line infection, Klebsiella, last week. He showed signs of being unwell at 7am, but by 8:15am I was in my local hospital where he was extremely unwell for over 12 hours. However he pulled through and bounced back and we were discharged on twice a day IVs 48 hours later!

We then went on holiday. We went to Camp Bestival and has an absolutely amazing time despite the relentless IVs, but we were determined to go and enjoy ourselves!

Rowan has his first hospice stay next week and we have everything crossed it’s ok. It’s like an assessment to see how many nights we are entitled to as respite. While we are there we are hoping to fit in some of our new hobby, geocaching!!

Thank you so much for the post, especially Karen and Toni, and Kim and Stevie, and Sarah and Fudge the cat, and also the regular cards from Marty Longo.

Update 2nd May 2014

Rowan has recently been back in to Great Ormond Street for 2 weeks to try and get him back onto some milk into his small bowel after the clinical incident last September. Unfortunately this completely failed, but we have not yet given up. Rowan is awaiting various tests and scans to still try and figure out what is going on for him with a view to finding a way forwards, or back to where he used to be. We have, however, had the discussion that Rowan can live purely on TPN and lollies for quite a long time as long as his liver manages ok and so far it seems ok. Rowan will also be going back into GOSH for a week on 12th May to try and determine why he is no longer responding to his endocrine treatment plan, and find a way forward with this too. His pain is also, as always, an issue, but he soldiers on through determined not to let it ruin his life. Sometimes he’s a little too determined and we are still figuring out the pacing!

I wanted to say thank you to those who sent Rowan birthday cards and gifts, he was very pleased! It means so much to him to receive these as none of his (or my) family sent cards, or really acknowledged this huge milestone of turning 5. We went to West Midlands Safari Park for his birthday and he had a fantastic time, as did Cameron with all the animals!

Update 27th December 2013

Rowan just wanted to say a really big thank you to everyone who sends him and his siblings post. We are going through a pretty tough time at the moment and post brings the much needed distractions.

Rowan has been quite poorly. He has needed a course of IV antibiotics for a line infection and has lost an awful lot of weight and all his muscles are wasted and all his tone is awful. He will now need splints and is spending a lot of time in his wheelchair. The physio has said he will need to go back to a walking frame for a while soon as he is struggling so much. So it’s a huge step backwards for him, but we are remaining positive that this is just a blip. However, another GOSH stay may be imminent. We have 4 weeks to turn things around. His pain is difficult to manage and he is tired all the time, very pale and very inactive. He still has that cheeky gorgeous smile and plenty of attitude though.

We had a really nice Christmas at home just the 5 of us. Much excitement over Rowan’s walkie talkies from Santa (the one thing he asked for!).

Thank you so much for all the elf gifts, Christmas gifts and Christmas cards. With no family and very few friends it makes us feel very loved!! There are a few people we wanted to say thank you to. The high school in America who made cards for the children, thank you! The brownies who sent Katrina’s elf parcel! She loves her box of treasures, thank you. Sarah and Fudge thank you (we knew it was you even though there was no name on it). Thank you Glad, for always finding amazing Mickey Mouse items!!

I also wanted to say a really really big thank you to Kim. Thank you for organising the elf project, we had great fun choosing the gifts we sent, as well as receiving some. Like I said, it’s nice to know that there is someone out there who spent time thinking about my children and the difficulties they go through, especially being so isolated. I also wanted to say thank you to Kim for making sure I wasn’t left out this Christmas and I already have some recipes written in my new book. Thank you everyone.

Update 3rd November 2013

The last month has been very eventful for us all, and not in a good way. Rowan went for a routine procedure to check out how his gut was doing and due a clinical error (that is now being investigated) spent a total of 32 days in hospital. Rowan had to have emergency surgery 12 hours after coming back from the planned procedure, to correct a huge error that happened, that has never happened before. He came out of theatre the second time and was very sore physically, but also scarred mentally. He had to have his stomach stitched back to his abdomen wall, and his gastrostomy tract sorting out. He had peritonitis, he then had a reaction to ketamine (he came out of theatre with analgesia) so had to have morphine only. He then grew 2 abscesses in his stomach. He then had an allergic reaction to an antibiotic that took 10 days to get under control. He then needed a blood transfusion. He then spiked temperatures. When we finally got to a point we thought we were winning we tried to give Rowan dioralyte. He was on 24 hour TPN until this point, completely nil by mouth. We gave him 5mls an hour, a teaspoon an hour, of basically sugary water, and the pain was immense, he needed extra pain relief. He didn’t leave his bed for weeks and weeks at a time. Something wasn’t right. So we let him have longer gut rest. We then tried again, 4 weeks after the emergency surgery and got the same response. His gastrostomy drainage output has almost doubled, it has blood in it, he’s still not very well. He had an endoscopy to see if they could see a reason for all the problems and everything seemed to be ok. So they could not find a reason for all his continued pain and feeding problems.

So, after 32 days, we came home. Rowan is still considered ‘unfeedable’. He has gone from a child who eats, has milk, and TPN, to a child who is on 24 hours TPN and has medications Intravenously, which he has not required up until now. At the moment he still doesn’t really show much interest in food, which is extremely concerning. The doctors are hoping that a while longer with gut rest and he will be fine, but they don’t really know to be honest.

Two days before we were due to come home, Ayden, Katrina, and Cameron came to visit us with some family friends. Ayden got hit by a cyclist while crossing a road, was thrown in the air, and smashed his forehead on the kerb. One car journey, immobilisation and ambulance journey on a spinal board later, we were at A&E with a big gash on his forehead that goes right down to the skull. They were unable to ‘fix’ him that night, so I had to take him back to UCLH on Saturday morning for surgery to fix his head. So I had two children, in two hospitals in London. It was certainly a long month!

Now that we are home, we have had half term. It’s been hard adjusting to a new routine, with all the children here all the time. Rowan’s mobility has decreased and he’s is so exhausted so quickly. We have had fun though thanks to a couple of friends, we have made this half term the best so far, from pumpkin carving, to hilarious road trips, to the cinema, and to bowling. All working around Rowan’s new harrowing schedule, but we did it. Rowan is back at GOSH on Friday for another minor procedure, hopefully it really is minor this time!

Thank you to everyone who sent Rowan post while he was in hospital, Dottie, Glad, Kim and Stevie, Louise, Karen, Toni and Connor, Laura J, and everyone else who sent us post, there are too many to mention. You have no idea how much these letters, cards and postcards mean to a bedridden child in pain.Some days the only time he would sit up, was when the post arrived.

Update 7th October 2013

Rowan is doing well, but still isn’t well enough to go home. We have tentatively started feeding him. He is still requiring morphine for pain. We will be here a little while longer yet.

Thank you to those who send post, it really does make him smile. The first time he sat up after his emergency surgery was to open post.

Update 29th September 2013

Just wanted to let you all know what’s been going on with Rowan recently. We came to GOSH for a routine motility test – the same one we tried in May but failed. It failed again, but he just wasn’t right afterwards. It was put down to being sore. We gave him medicine in his tube like always and he screamed. Very strange. Then he tried to sit up and he screamed solidly for 6 hours in agony. While everyone tried to work out what was going on, he was just in so much pain. At 11.30pm, 12 hours after we came back from IR, we finally had doctors and anaesthetists and surgeons and radiographers. While they were still working it out a consultant surgeon came in, took one look at him and said theatre NOW. By 00.15am he was in theatre and at 3.45am he came back with the perforation and displaced gastrostomy resolved. Hooked up to ketamine and morphine, and very very sore. He then had a reaction to the ketamine, couldn’t wee, and has numerous infections.

So that’s where we are now. He is not allowed to eat until next weekend at the earliest. We are just taking it one day at a time, he is not recovering as quick as the teams would like but always at his own pace.

Thank you to Denise and Kim and Glad for both mine and Rowan’s bits. Amongst all this I passed out when we went to get Rowan from theatre the second time due to lack of food and fluids. It’s hard to explain how you can just forget to eat and drink in a crisis, and this combined with a lack of sleep, and high stress/anxiety lead to me having a little lay down on the floor. I am ok now and thanks to Kim, Glad, and Denise, I have food and drink supplies whether I can leave the ward or not. Thank you.

Update 10th September 2013

Rowan’s life has been the same as the last post. We still battle the pain, and now he is carrying his backpack around more often he is getting a pain in his back that he says is ‘burning’. So far we aren’t sure if it’s helping or not but we’ll see, these things are never quick to change for Rowan it’s always slow progress. On top of that he has yet another infection, so more antibiotics for him. He is getting pretty sick of them to be honest, with ‘not ANOTHER one’ when the extra syringe is added to the row of other syringes with medicines, all of which he has little nick names for, and I tell him it’s an antibiotic. But life is how it is for him, and he’s determined not to let it get in the way.

Rowan started school last week. He has had 4 days there and he is LOVING it. It makes him exhausted, his pain has increased, but he is so happy to just get up and go to school each morning with a bit smile on his face. Thank you to those who sent Rowan ‘1st day at school cards’ I didn’t even know they made those!! He was really thrilled! Today he went sailing with his new carer. Rowan has a couple of favourites when it comes to carers, and I am sure the new lady will be a firm favourite! He had an amazing time and looked so happy. I am rather jealous however!

In just 15 days time Rowan will be admitted to GOSH for 3 days. Then he will be home for a week, and then he will be back for 5 days. These are for the tests that failed at our last admission.

Thank you so much to Sarah for Rowan’s underwater dough as that is in the box to take to GOSH, along with the activity book. Thanks to Karen and Toni for Rowan’s stationary for school, we can’t wait to use it to start learning to write. I can’t remember who sent Rowan a pencil shaped pencil tin with mickey pencils inside, but thank you for those too. Thank you to Viks for Rowan’s fab ride-on JCB it’s a firm favourite!! Also thank you to Glad for the top, he really will be a Brighter Spark soon!

Update 17th August 2013

I just wanted to quickly apologise for not updating recently. Illness has gotten in the way. Since the last admission, things haven’t really changed too much. Rowan’s pain has not really improved and he’s now struggling with lower back pain. We checked that his spine is ok, and it is, and we checked that his kidneys are ok as he had nephrocalcinosis before, but that seems to have gone as well. Apparently it is very uncommon in young children to have back pain and they could come up with no reasons or solutions or treatments, so this continues for him.

Rowan is due to go to GOSH again next month to try and redo some of these tests although at the moment it looks like there are problems with his gut which prevent some of these tests being done. As it stands, we have increased some of his medicines to try and help him out; we have changed his formula milk, increased his TPN a bit. We were reducing his TPN to try and wean him off, as that was always the aim, but we got to a point where he was unable to make simple decisions, such as ‘which film do you want watch’ and he became very clingy and upset, and very high maintenance. Since increasing the TPN Rowan is back to his usual self, making choices and making sure we are all aware of them! We tried to get Rowan off his milk feed for longer in the day times, but he is having 3 hours sleep in the day. This is not usual for a 4 year old. So we are going to try and go back to feeds in the day to see if it gives him a bit of an energy boost, and stops him being so exhausted. He also now has a drainage bag attached to his gastrostomy for a bigger chunk of the day to try and easy some of the bloating and stomach pain and it seems to be helping a little bit. We are also still plagued with a multitude of infections that we just don’t seem to be able to clear no matter how many antibiotics we throw at them.

Apart from the extras we have been thrown, the main focus over the last couple of months has been on sorting things out so that Rowan can go to school in September. He is SO excited to be going to big school with Cameron, Katrina and Ayden. He has met his teachers and his helpers and he can’t wait. He will only be going part time, to try and limit the pain a little a bit, and we’ll see from there.

Rowan loves all his post. Thank you so much for making him smile, it really does brighten the children’s day when the ‘post lady’ arrives.

Update 31st May 2013

Rowan just wants to say a really big thank you to everyone who sends him post, especially when he’s not doing so well. Rowan was in GOSH for what was meant to be a battery of tests to help us understand Rowan’s gastro problems better. However this just didn’t happen. When we arrived we did the usual blood tests, swabs etc. I already knew he had infections, and took the swabs over a week before we were due to go to GOSH in the hopes we could get some treatment, however this didn’t happen, and Rowan ended up riddled with infections. Each time he gets an infection it progresses more quickly. So, a lot of the tests were cancelled. Rowan had an EGG (Electrogastrogram) and he had a liquid gastric emptying study. They attempted to do an ADM (Antroduodenal Manometry), but they couldn’t get the probe in, they tried for 2 hours. The radiologist said that his stomach and his bowel just aren’t right. Usually the gut helps to push the probe through but it wouldn’t. They even tried taking his Gastrostomy out and pushing the probe through the hole there and it still wouldn’t go in. It would appear from this that he has gut dysmotility. This is no huge surprise to anyone to be honest. It took two hours of them pushing, pulling, poking, prodding, luckily Rowan was under General Anaesthetic but he is very very sore, and currently not eating properly.

We also saw our new Endocrine doctor, who believes he may be able to give Rowan a partial diagnosis at some point and has a few different ideas as to what may be going with Rowan from an Endocrine point of view. For now Rowan’s care has increased again, his list of medications has rapidly grown. We will probably have to go back to GOSH for the tests to be done. The pain team didn’t have any ideas really, they considered a TENs machine, but decided he was too young, although they did recognise the pain (thanks to the aid of videos) and are hoping to get my local team more on board with his issues. We will have to also go back to GOSH for 2 weeks of Physio rehab at some point too as it’s agreed his mobility is worse and he is even weaker than he was before, despite the physio, so they need to look at him again properly, which will be the 12th June.

Thank you for all Rowan’s post! He LOVES his letters from Blossom (Kim Lawrence), and all the Dottie post. As always, Denise knows just how to make little man smile, and Rowan’s book from Glad kept him entertained for ages in hospital. Receiving the post actually in hospital, made his day. He was SO excited! I hope to update again soon, with more positive news hopefully.

Update 30th March 2013

So, it was November since we last updated! Since then we had Christmas, which was the best Christmas I think we’ve ever had. We went away for Christmas and the children had a fabulous time, and were very very spoilt!

Since then, Rowan has continued to struggle with his pain and fatigue. We have not been able to get him to nursery for any longer than 90 minutes per day and this causes him pain. However, he faces it with a determination, and no matter how much pain he’s in, he wants to go to ‘nerfery’. There has been no progress on this side since November, still no one is investigating his pain, or helping him, or providing us with any better pain relief. It is these times when post really helps Rowan. When the children’s post arrives, they get so excited and are really happy. The children love reading through the post and trying to decipher some of the handwriting.

Rowan went back to GOSH last month for an outpatients appointment and we are trying to wean Rowan off of his TPN. This is difficult being a single parent as he regularly wakes up through the night hungry due to hyperphagia (obsessive eating). He has gained a little bit of weight and a little bit of height and now seems like a good time. Unfortunately this is not as easy as it sounds.  Rowan is on an enteral feed. He is fed directly through tube into his small bowel. He is fed a very special very concentrated prescription formula milk, via a pump and this is now 24/7. In order to wean him from his TPN, we have to increase the feed as we decrease the TPN. This is already causing problems. Rowan is in more pain carrying his backpack around and he has leg pains and back pains. He is also suffering again with bloating and stomach pain/cramps therefore he is needing to have a drainage bag, attached to the tube that is in his tummy (he has two tubes) to try and drain out whatever is causing the bloating. Some days are better than others, some days he’s absolutely fine, other days we flit between screaming and clingy and asleep.

Also, since I last updated the children and I have moved house. It was very exciting but also quite difficult for the children. They now seem to be settling, and have the added bonus of being able to ‘play out’ now that we don’t live on a main road anymore. There are lots of other children who live near us too so they have been making friends. I can’t wait until the summer when I am sure they will be outside all the time. Also, we now have a nice little garden, which will mean that Rowan can also play outside when it’s warmer.

February brought us a letter that I had been awaiting for a long time. The confirmation that Rowan is starting school. He is going to the same school as his big brothers and sister in September. This is such a huge milestone for any child, but especially a child who has struggled and continues to struggle, like Rowan. Luckily for us this means that the 1:1 he already has for nursery, should go with him into reception, so there shouldn’t be too much upheaval. Also, as Ayden is already in reception, Rowan has regularly visited therefore shouldn’t be too difficult to transition. I took Rowan into our local school uniform shop and ordered Rowan’s ‘smaller than usual’ school uniform jumpers. No one is quite sure where to find trousers to fit him, or tshirts, but we’re working on it! At the moment we are not sure how school will pan out for Rowan as he currently doesn’t attend the 15 hours all other 3 year olds who go to nursery do and he is very nearly 4. It’s looking highly unlikely that Rowan will be going to school full time and will start off part time. How we increase that we’re not sure at the moment with the pain being so prevalent, but he is very excited to be a ‘big boy’.

April brings us a very very exciting week. Rowan, Ayden, Cameron, Katrina and I are going on holiday. This is our first ever holiday. We are going with a couple of my family members and the children are extremely excited!! We are off to Devon. It’s all booked and paid for, school have agreed the children can have a week off school, and the car is hired. Two adults, 5 children, and a 5 hour drive to Devon. This is no mean feat with Rowan, but we are determined to make some happy memories.

The children have had a lot of post. Ayden loves receiving his letters from Liam and is writing one back as I type. Katrina loves reading the letters from Laura J. Cameron receives a lot less post than the others, but loves his post from Jacqui. Rowan absolutely loved the card he received from class 1CN! And the Easter Bunny ears and Bubbles that Sarah and Fudge sent went down a treat! All the children are so excited when their post arrives, it really brightens their evening. Thank you to everyone.

Update 26th November 2012

Rowan has received some really lovely postcards this month. Thank you to everyone who has sent him cards, little notes, postcards, little presents, stickers. He appreciates everything.

This month has been really rough on Rowan with pain in his legs. As yet, no one is treating this pain with pain relief, or investigating where it’s coming from. It’s affecting his sleep, and mine. On a positive note, those night nurses are earning their money! Rowan’s still not gaining any height, despite the doses of Growth Hormone, so we now need to try and cut his calories down to prevent him from becoming overweight, as although gaining roughly 100g a month is pretty rubbish, without growing upwards, the extra weight will begin to cause lots of problems. As yet we don’t know why he isn’t growing upwards still. Rowan remains on TPN, but it’s all being tweaked to try and reduce the calories. The problem with this is that the more TPN they take away, the more oral food Rowan eats to compensate. He has an additional label of hyperphagia to go with everything else. With all the additional oral foods, his gastroenterology problems are exacerbated. So we’re back to bloating, stomach pains, constipation as well. It’s very difficult to keep on top of and keep him comfortable!

On a positive note, Rowan is loving going to ‘nerfery’. Although this is still causing problems with pain, as a little 3 and a half year old it’s fantastic. He’s learning his numbers, and recognising them spontaneously and he’s working on putting them in order. He’s just coming on leaps and bounds cognitively. Physically he’s still really behind and the closer he gets to 4, the more noticeable the difference. Rowan is as yet unable to jump, he can’t step up the curb without needing to hold onto something, or someone. He is unable to negotiate uneven flooring still. He struggles to climb up and down things. Despite this, he still manages to cause chaos, with a big cheeky grin on his face! Sending Rowan to nursery was one of the hardest things I have ever had to do, but it’s paid off as he loves it. And, despite the pain, he gets everything he can out of nursery. He can tell you who his friends are and it’s really nice that he’s being able to access the things he deserves. And for that, we are grateful to the school, they would do anything to keep Rowan included. For example, this week, Rowan will attend his first ever DISCO!! He will have someone with him one to one, to keep an eye on him, and that one to one will not be me. He is learning some independence, and that we are not attached at the hip, and I am learning that i can just be Mummy sometimes, like the other Mummies. I don’t have to be there, I can pick him up afterwards and hear all about it, like I do with Ayden, Cameron and Katrina, rather than already knowing, because I was there.

Ayden has been into GOSH as well. It has been confirmed that Ayden has a problem with low blood sugar levels, hypoglycaemia. He is not coping too well with this, as he’s not allowed to go all night without eating. An average 4 year old should be able to fast 18 hours with no real problems. Ayden was struggling after 7 hours and at a dangerous level after 10 hours. Therefore he is now no longer allowed to go all night without eating. I have to wake him up around 10pm for a drink and a snack. This is causing problems with his sleep pattern and he’s back to having a sleep in the day, usually just after he comes home from school! We await a better plan from GOSH as this can not continue for him, or for me. It would also appear that Ayden is not growth hormone deficient as originally suspected. So where the hypoglycaemia comes from we don’t know as yet.

Cameron and Katrina are doing as well as can be expected at the moment. Lots of changes happening at home, and I am doing the best I can to keep things to a minimum, and keep things consistent. We are moving house in the new year and the children are looking forward to being able to choose how they have their new rooms. They have all agreed that they will dedicate a space on the walls in their rooms for all their fantastic post, so when they are feeling a little sad, they can look at the letters, pictures, cards and postcards. This will all happen at the same time Rowan goes back into GOSH for 2 weeks for some more horrendous testing to try and form a better plan, and to try and work out what’s going on, and maybe get a few more diagnosis’. At this point I don’t get my hopes up. Lots of plans are always mentioned and nothing seems to come of them. Communication is often not medical professionals’ forte! So for now, we plod along as best we can, looking forward to Christmas, and a fresh start in 2013!

Thank you to all of those who send messages to me too. I really appreciate them, especially at this difficult time.

Update 17th October 2012

Rowan has now started nursery and is thoroughly enjoying his time there. Although this is an activity that he loves, it comes with it lots of problems. Rowan is having problems with his pain levels and he’s getting every single cough/cold/runny nose possible. He has also had infected feeding tubes for around 4-5 months now. We are on our last option to clear the infection, and it’s still there, and yet no one knows where we go from here, or why he’s constantly got infections. Rowan has also had problems with his blood sugars and his gut. It’s not really working properly and no one is sure why.

Next week, Rowan and Ayden are off to Great Ormond Street again, both for various fasting tests and xrays, to try and maintain a little more stability for them. Whilst Rowan is struggling, he always approaches it with a smile, although more recently he’s been very clingy and cuddly. On a plus side, his weight and growth has remained static all this time, and while that’s a little frustrating because he should be growing (especially as his appetite has increased again) it’s also positive because being ill and struggling with infection hasn’t caused the usual big weight loss.

Rowan will also need to go into Great Ormond Street soon for about 3 weeks for motility testing to find out exactly which bits of his gut aren’t working properly. These tests are not very nice for any child. Also having our family completely separated again will cause problems for all the children.

The children would like to say a huge thank you for all their post, and letters, and monthly projects! Rowan particularly loves the Mickey mouse tshirt that Glad recently send him, and all the children love their post from Natashja. They often receive more postcards, cards and letters, than i receive, and it’s a lot more exciting that’s for sure!! On those days that Rowan really struggles and a letter lands on the doormat for him, it instantly puts a smile on his face. Thank you so much for making my children smile, especially at the moment.

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Olivia D

18 June 2012

Story written 2012

Olivia was diagnosed with Neuroblastoma stage 4 cancer at the age of 4 after limping and a series of back pains and fatigue. She’s had the general protocol of treatment for Neuroblastoma, high dose chemo, surgery radiation, repeat chemo and transplant from the NHS at Glasgows Yorkhill Hospital and Royal Aberdeen Children’s Hospital. She then went to Germany with her family to have immunotherapy treatment and had 5 doses of the immunotherapy. Sadly whilst on this treatment Germany discovered Olivia had relapsed in her ribs so the treatment stopped.

After the news of relapse, Olivia started another German treatment called RIST therapy which is another form of chemotherapy. It hit her hard she was often hospitalised due to the side effects and infections. It helped for a few months by shrinking the tumours, but soon the tumours spread whilst on treatment so it had to stop. Olivia has since twice been to the Hufeland clinic in Germany to detoxify her body of all the poison from the treatments and cancer and have some holistic therapies.

Recent scans in March 2012 have show Olivia’s disease has spread extensively throughout the spine ribs and pelvis area including shoulder blade. Her Mum and Dad have been giving her photodynamic therapy every day along with ultrasound treatment, infrared sauna and a range of vitamins. Doctors have said that her cancer can not be cured, but her mum and dad refuse to focus on this and won’t give up on their little princess who they worship. Olivia is has a little sister Jessica 20 months old and is due a new brother or sister in September.

On the 6th of June we heard Olivia has gone downhill, she is confined to bed and feeling sad. Her parents are looking at treatment options in Mexico. Please send lots of cheerful smiles to Olivia.

Update 29th June 2012

We are very sad to say Olivia passed away this morning. She became very ill whilst having treatment in Mexico and members of the public were moved by Olivia’s story and donated money to fly her home on life support. She passed away with her family by her side.


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Melissa J

18 June 2012

Story written 2011

Melissa has had a very difficult start in life. She was born 8 weeks prematurely and shortly after was diagnosed deaf.

When Melissa was 13 months old, she was diagnosed with Acute T-cell Lymphoblastic Lymphoma. She has had many setbacks, including Gulliain Barre Syndrome, which left her paralysed from head to toe.

She has now learnt to walk again for the third time. She has also gained some hearing, which is great news.

She is a very brave little lady who keeps amazing us every day.

Update 29th January 2013

Hi everyone!

Melissa is now ready to move on from Post Pals and give the chance to some one else. We have loved being a part of your fab charity and have made some life long friends, for sure! Thank you for all you do and our post and we will keep writing to Pals in the future!!

Lots of love, Moona and Melissa xx

Update 28th March 2012

Melissa’s scans were all clear, but they are concerned about her getting respiratory problems so easily. They started her on I.V. immunoglobulins again to boost her immunity. She is not a very big fan of the cannulas, but she is a very brave little girl. She knows that she needs the medicine to make her better!

Update 8th March 2012

Melissa loves getting mail. She has been getting letters all over the world lately; she had some from Netherlands, USA, Japan, Finland! Melissa speaks Finnish, so if anyone from Finland sees this, feel free to write in Finnish!  Melissa loves the Moomins, especially Niiskuneiti and Pikku Myy.

Melissa has been doing very well, but we’ve started to see what the long term effects of chemo can be like. Melissa’s teeth are not doing well, and she probably has to have quite a few pulled out. She has an appointment in few weeks to see what the plan will be. She is down to just one daily medication now which is awesome! She will have some scans on the 20th and we are of course hoping that all looks clear!!

Update 17th November 2011

I just wanted to let you all know that Melissa has been so happy with all the lovely mail!! She recently had an awful day in the hospital… she had GFR, IV immunoglobulins (had a very bad reaction), DNA testing, she had 2 cannulas and 1 butterfly put in for all the bloods… and she was very brave, but it really was a long day. It was so nice to come home, because there was some really lovely mail waiting for her, including a flying fairy!! She was just sooo happy and soon forgot all about the terrible day spent in the hospital.

Thank you so much for all you do, you have made my girl smile so many times already, it is truly wonderful to see.

Update 3rd October 2011

Melissa is now home, but still keeps having temp spikes. They weren’t able to find out what’s making her poorly.

Thank you ever so much for all the letters, cards and gifts, they have really cheered her up, especially during our latest hospital stay. Melissa loves getting mail!!

Melissa loved all the cards; she even got one from New York!! She also got one that was completely blank! Melissa absolutely adores her My Little Ponies and all the stickers have found a place. They’ve been so nice to have when we’ve been in the hospital; she has made lots of art!

Thank you so much for all that you do, you’ve made my girl smile so many times already!

Update 25th September 2011

Melissa has been in hospital for few days now with a very high temp (over 41c). Doctors can’t figure out what’s making her poorly. She has been sick once a month like this since Christmas. She has a very hard time breathing and she is breathing 80 respirations/minute. Hopefully antibiotics will work as we’d love to have her home soon!

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Jamie B

18 June 2012

Story written 2011

Jamie was diagnosed with severe long segment Hirschprung’s Disease when he was 3 days old as he was born with a severe intestinal blockage and required immediate surgery.

He has since undergone five further surgeries which were major and to remove more blocked bowel. Jamie has a hickman line and receives TPN and intravenous fluid through this every night.

Jamie also has a permanent illeostomy bag because as a result of his disease, he has short bowel syndrome and not enough bowel to have a pull through procedure.

Jamie has spent at least two years of his life in hospital and is constantly in and out with dehydration and infections. Jamie will hopefully receive a small bowel transplant when he runs out of venous access as his life depends on him having a central line.

Jamie is a very happy, lovely boy who copes fantastically well with his illness but I feel he would be so pleased to receive some post from people. It would really cheer him up when he is poorly.

Update 14th June 2021

Jamie is suffering with a lot of tummy pain at the moment. He tries to keep smiling but it is grinding him down bless him. Birmingham Children’s Hospital have accepted Jamie’s referral so they are going to offer advice and treatment going forward which is really good as we have wanted a 2nd opinion for many years.

Thank you again to everyone who sends post to Jamie and Keeley and to Ally and everyone who helps post pals as it is appreciated so much and makes such a massive difference.


Update 9th April 2021

Jamie’s health remains the same as the last time I updated on the whole. He is spending even more time in bed due to his legs and feet hurting badly due to circulation issues and hypermobility. He is due to go to hospital at the beginning of May for further tests and a big review. They would like him to have a trial of nasogastric feeding which will be upsetting for him if it goes ahead.The doctors would also like to introduce daily injections into his treatment plan to try to slow down his stoma output. It is an uncertain time really and we are hoping that a 2nd opinion from Birmingham will be a fresh pair of eyes on his condition.

Thank you to everyone at post pals that make this possible and to everyone who sends post to the children and also a big thank you to Kerry and Mark who send post each month

Update 19th February 2021

Thank you so much to the lovely people that send them post, it makes such a difference to them and it is so appreciated. They both loved the Amazon voucher and sweeties, thank you, and the lovely balloons, thank you kind people so much. Also thank you to Kerry and Mark for the fab presents.

Jamie’s health has unfortunately declined as his body is struggling to cope nutritionally so he has been even more exhausted than usual and he has been having problems with his blood not clotting properly, so he has been in hospital more which at the moment especially is worrying. He has been referred to Birmingham Children’s Hospital to be seen by the intestinal failure specialist there and also the vascular team about his limited central line access.

Jamie and Keeley both absolutely love cats and anything to do with cats as they have a black cat called Daisy who is a massive comfort and best friend to them both. Jamie loves playing Fortnite on his Xbox and Keeley enjoys playing Roblox, however it will be so nice when the warmer weather comes and they can sit outside in the garden again.

Thank you again to everyone who sent post to the children this month or anytime in the past and also a massive thank you to Ally and everyone at Post Pals you all put big smiles on their faces 🙂

Update 20th August 2020

Jamie’s condition remains mostly the same. He is on an intravenous fluid drip for 12 hours every night . His central line has become overgranulated again, so he will need to go into hospital soon to have a new one inserted. 

As he is getting older unfortunately it is becoming more and more noticeable that Jamie gets tired much much easier than his friends, and he really struggles to do much at all before having to lay on his bed again. He is starting secondary school in September and I really hope he will manage to attend more than he did at primary school and that he will cope due to his energy levels being so low. 

Update 20th June 2019

Jamie is very tired at the moment and has been resting a lot. He is going to be having some big tests on his veins over the next couple of months as his venous system is struggling due to being intravenously fed every night for most of the last 10 years. He keeps smiling and is an inspiration to me how he copes with everything he has to deal with daily. 

I would like to say a big thank you to Kerry and Mark for their lovely gifts 😊 and for always thinking of Jamie and Keeley and brightening up their days ⭐️  and to everyone who sends post and presents to the children – you make such a huge difference to their lives, thank you so much 😊

Update 19th December 2018

Jamie’s condition remains the same. Life is constantly up and down for him. He is still attached to his Intravenous drip for 12 hours each day. Jamie is struggling more with his condition as he gets older. His bowel has obstructed several times in the last few months, which is painful for him and dangerous. His central line will need changing in January, which involves an operation and hospital stay. He will most probably be having TPN alongside his fluid, as he is struggling to fight infections and put weight on, so needs more calories intravenously. This carries a greater risk of central line infection, however it is unavoidable, as Jamie has been feeling very lethargic and poorly lately. 

We would like to thank everyone who has sent post to Jamie and Keeley- it really does make such a massive difference to their lives and brightens the day up so much. 😁❤️

I have also received a lovely parcel this month and several lovely letters. Thank you so much. It really did make my day 😁❤️

A huge thank you to Kerry and Mark for your lovely gifts ❤️❤️ The kids love receiving your post 😁😁 They love their dressing gowns thank you x 

Thank you for everything you do and all your hard work at post pals – it so very appreciated x 

Update 10th October 2017

Jamie is up and down as usual, but he always gets on and makes the best of every situation – he is really so special. At the moment he is battling yet another line infection which we are hoping will be cleared with antibiotics, as he doesn’t have many places left to site a central line, as his veins are so shut down. He has been undergoing lots of tests to see how his dehydration levels are, despite being on an intravenous drip every night. Thank you to everyone who has sent the children cards, letters and presents – it is so kind of you all and it definitely puts a big smile on their faces. Thank you to Kerry and Mark for their lovely post, and to all of you at Post Pals for your hard work and kindness.

Update 16th January 2017

I hope everyone has had a lovely Christmas and New Year. Thank you so much to everyone who sent Jamie and Keeley presents and cards over Christmas, they were all lovely surprises and made Christmas even more special, thank you. Jamie has had lots of hospital appointments lately as he had a new central line inserted in October. After battling a bad line infection for over a month and being in hospital for much of that time, it became apparent that the infection wasn’t going to clear. Unfortunately Jamie doesn’t have much access left, as his veins are quite shut down, so the only place they could insert the new line was on his tummy next to his stoma bag, which makes it very hard to keep his dressing and line sterile and clean at all times. So he is having very regular check ups. Jamie tries very hard to stay positive, bless him, and tries to blend in with his friends at school and keep up with them.

There are so many lovely people to thank for your kindness and I want to say a big thank you to all of you that sent post. Me and Jamie will send letters to you very soon to say personal thank yous.
Thank you to Vikki and everyone at Post Pals for all your hard work and for making Post Pals possible.
Thank you to you too Ally, and I hope you and your baby girl are well.

Update 7th October 2016

Jamie has had a very difficult couple of months and has been in and out of hospital. He has missed a lot of school. He has got a central line skin infection, which despite a month of IV antibiotics, hasn’t cleared. He is going to QMC next week to have a new central line fitted because his veins are weak, they have few places left to insert them, so this will be tricky. Jamie has also been extremely tired and has had many days where his tummy has been misbehaving and he has felt rubbish.
Thank you to everyone who has sent him and his sisters post and/ or parcels it really does brighten their day! Thank you also to Kerry and Mark, your kindness is amazing, we feel like we know you and when the kiddies open their gifts from you, they always say “ah yay look it’s from Kerry and Mark” A big thank you also to Vikki and everyone at post pals for all of your hard work and for making all this magic happen.

Update 7th July 2016

Jamie’s care remains the same- he is very carefully looked after and has lots of medicines and Iv fluid overnight. The regime he is on seems to work for him and he has been mostly stable touch wood although he has had a bad virus which wiped him out but thankfully he is over that now. He always struggles with his energy levels- it is a daily battle to keep him hydrated and his fluid balance positive due to his short bowel and stoma. Jamie always puts a smile on his face even when he feels tired and poorly which is why he is so amazing.

Update 30th January 2016

Jamie is very up and down and this is a constant thing. Although he has been at home for several months, on many days he has very little energy and feels very poorly due to having short bowel and not absorbing enough nutrients to give him sufficient energy. He is always brave and I’m very proud of him for how he deals with feeling very drained much of the time. He is currently having tests to assess if his kidneys are damaged due to being intravenously fed since birth.

Also we would like to say a massive thank you to everyone at Post Pals for everything they do, and a really big thank you to everyone who is kind enough to send post. It really does make the children’s day and is so lovely to see the smiles on their faces which you all make possible. Thank you.

Update 13th October 2015

Jamie has been struggling with dehydration even more than usual this month. His energy levels have been very low and he has been feeling poorly much of the time. Since being back at school he has also picked up several viruses which always have a big impact on his condition and make him much weaker due to him having a short bowel. Jamie loves to receive all of your post – it puts a big smile on his face and it is so kind of you all, thank you. It also makes Charlie and Keeley’s day to receive post. Big thank you the lovely Kerry and Mark for making the children very happy with their generous gifts and cards. Thank you Vikki and Ally for all your hard work, it is much appreciated.

Update 24th April 2015

Jamie had a rough couple of months at the beginning of the year, as he had a lump growing in his mouth which kept bleeding profusely. He was off school for about a month and had an operation at Queen’s medical centre to remove and biopsy it. After an anxious wait, the results came back that the lump was benign. However, Jamie was in a lot of pain for a few weeks afterwards and it put him off eating which affected his bowel.

Thankfully he is having a steady month so far and the sunshine seems to be having a positive affect on him. There is no change to his condition or level of care and he is still attached to his iv fluids every night for 12 hours.

Jamie has had a fantastic amount of post over the last few months. Thank you very much to everyone that has written to Jamie or sent him a card, it makes him smile so much when he sees the postman coming up the path with post for him, or when he gets home from school and has some post waiting for him. The girls also love receiving post, thank you so much for everything you do.

The balloons were such a wonderful surprise, when they opened the boxes and the balloons floated out they looked amazed! What a lovely idea, thank you Post Pals.

Thank you to the Christmas elves; Claudia, Claire, Rachel and Rebecca, for the lovely presents they sent. Thank you to Kirsty for the frozen bubbles and the Turtles etcher sketcher, Jamie had hours of fun with it. Thank you to Natasja for the Green Lantern lego mini figure, Jamie was so excited when he opened it! Thank you to Maria for the frozen gifts as Keeley loved them. Thank you to Millie and Fly for the party bags, we hope you had a lovely birthday. Thank you Toni, Sammi and Connor, for the Halloween treats and the lego men crayons, they were super cool. Thank you to Jenny for the fossils from the Sedgewick Museum, Jamie was fascinated by them and took them into school for show and tell! Thank you to Carrie for Charlie’s Halloween gift as she loved it. Jamie loved the Christmas cards from Santa, Mary and the reindeers, they were very special and made Christmas even more magical. Thank you to Little Acorns Day Nursery, the fundraiser was a brilliant idea, and Jamie loved the pictures and cards, it’s so special when small children have made things for him! Thank you also to the children from nursery yellow class and class 5 at Scraptoft Primary School, the hard work the children put into making the cards was so touching and they were great!

A huge thank you to Kerry and Mark for the incredible game that you made for the children, wow I couldn’t believe how much hard work and detail you had put into making it! You are so clever it’s brilliant and they play with it lots! I really appreciate all of the lovely gifts that you send the children, you put so much thought into their presents and the kids really enjoy them. It is very kind of you and means a lot to the children that you have regularly thought of them.

Jamie has received a large number of cards and letters this year and I want to say a massive thank you to everyone that sent him post, there have been some really special cards and letters and the amount of effort that people have put into making them is amazing. Thank you to everyone who has sent Jamie mail, it makes him so happy.

Update 7th August 2014

Jamie is enjoying the summer sunshine, however he is having a very up and down time at the moment. He has had lots of hospital appointments lately and has been having lots of tests. He has been suffering with tummy ache due to bowel spasms which aren’t nice for him.

Thank you all at Post Pals for your hard work, it makes a huge difference to our lives and means so much to Jamie, Keeley and Charlie, when kind people send cards and gifts as they know someone has been thinking about them.

I’m sorry if I miss any thank you’s off the list this time but every card and present that has been sent has been very much appreciated. Thank you everyone!

I would like to say a massive thank you to Kerry and Mark, bless you. Keeley loves your presents so much – when they arrive she says it’s treasure! She knows your handwriting now and says ‘yay treasure from Kerry and Mark!’. The box of summer fun you sent this week is amazing, thank you. They have been playing with the indoor beach loads and the inflatable dolphin has to go everywhere with them!! The bag and towel are so cute – Keeley has put all her summery things in it. Jamie loved his pirate treasure too and Keeley’s princess stories are so special.

Jamie has received lots and lots of cards, thank you everyone. We stick them up in his bedroom so he can see them. Thank you to Toni, Karen and Sami and also Sarah G for your lovely post. To Marge for the card with supersnake inside – he loved it! Thanks to Kelly Taylor for the Disney photographs – they were fab!

Thank you for lovely gifts that have been received too. Thank you to Post Pals for the lovely easter gifts and to Becky for Charlie’s One Direction socks. Thank you to Karen, Toni and Sami, for the activity books and Charlie’s 1D book. Thank you to Niall Collins for Jamie’s turtle lego – he loved it! Thank you to Jenny for the easter treats, the children had fun making biscuits with the bunny cutter! Thank you to Gemma for the book and frog sock! Thank you to Claire Stevens for the lego – it’s Jamie’s fave thing to do!

If there is any one I haven’t thanked this time I apologise, all of the post and gifts the children receive puts a big smile on their faces.

Update 27th February 2014

Jamie is still very up and down with his condition and he had his hickman line replaced at the end of December. The doctors struggled to get a new line in due to the shortage of good veins that are left and he was very sore for a couple of weeks afterwards because he had several wounds where they had attempted to insert new lines. At least he now has a line that bleeds back though so no more blood tests for a while.

Jamie is also having a lot of discomfort and mucus from his lower end which is another complication of his condition – it makes him very sore so we have been thinking of ways to make him smile. I think he will be going into hospital soon to have a big washout under general anesthetic. He continues to be a lovely and cheeky little chappy though.

Jamie has received lots of post since I last updated, thank you. It has been fantastic for him and it gives him such a lift when he sees the postman coming.

Thank you to Melanie Balban for the Christmas decorations book – the children had great fun making them. Thank you to Rebecca for the spiderman blanket – Jamie has enjoyed getting snuggly under it. Thank you to Kirsty and Andrea for the One Direction bracelet, card and stickers – Charlie really loved them. Thank you to Jane for the turtle hat – he wears it to school and looks very cool. Also, big thank you to Kerry and Mark for the lovely presents you sent the children – Keeley said it was like a treasure box. A big thank you to Donna for the lovely presents too – a big hit, as always.

Jamie has had lots of lovely cards too – thank you’s to Toni and Karen, the pirate ship was fab. Natasha, the crocodile picture was amazing. Sara, the post card from the zoo was lovely. Jamie says his favourite animals are lions. The cards from Lilliesheaf primary school were great, thank you. Jamie also had cards from Rhett and Nina (Beacon School), Kirsty and Claire, which he loved. He sticks them all up on his wall.

He also received some lovely letters. Thank you’s to Marty Longo and a Happy New Year to you too. To Jenny for the Christmas poem – I liked reading about your dog Baron. To Suzanne, your dog Skye sounds fun as well. Bayley, thanks for your superhero letter and thanks Lucy for your spiderman letter. Thank you to Laura for Keeley’s lovely birthday card too.

I would also like to say a massive thank you to everyone at the Post Pals team who work so hard to make all of this possible and brighten Jamie’s life up so much.

Update 11th October 2013

Jamie has received lots of cards this month because it was his birthday. Thank you very much to everyone who sent cards, he loved them. Also, many thanks to Marty Longo, Natasja, Teresa Fearon and Toni and Karen Sami for their regular post which always makes him smile. A big thank you to all of the children who made Jamie cards – they are fantastic, the children put so much effort in to making them and Jamie looks at them lots. Jamie also received a lovely spiderman letter from Lucy Sparkes, thank you. A huge thank you to Donna Trett for all of the lovely presents you have sent the children, it always makes their day when the postman brings a box of exciting treasures from you, they have been playing with their halloween goodies and the bubbles were a huge hit, thank you. Also a big thank you to Laura Jack for the ninja turtles connect four, Jamie loves it and has spent many happy hours playing it.

A massive thank you to all at Post Pals for all of your hard work, you make such a difference and make Jamie’s life much brighter.

Jamie has had an unsettled few months, his hickman line is still being temperamental and he has required quite a few blood tests recently which has been very distressing for him, as he has poor vein access and is becoming increasingly afraid of needles, due to the nurses having to hold him still while the doctors have numerous attempts. I think his central line is being replaced in next couple of months.

Jamie started school in September, however he is only really achieving part time attendance due to tiredness, tummy ache and dehydration. He is picking up lots of nasty viral infections due to being around lots of other children which he is not used to. He is just recovering from a nasty chest infection, but he keeps smiling and really is a little star.

Update 20th August 2013

Jamie has been relatively stable and is looking forward to going on a teddy bears picnic on friday. He has really enjoyed his post, thank you. Thanks to Donna for the lovely gifts and he also loved his lego. Thanks to everyone for the lovely cards – Karen decorated a lovely one for him.

Update 31st May 2013

Jamie has had an up and down month, mainly due to continued complications with his hickman line. He went back to QMC to have a linogram and a few other tests which were thankfully fine. However the doctors are still deciding whether or not to replace his line in the near future.

He is looking forward to starting school in September, however his energy levels are still at times quite low. He is also looking forward to some sunshine as he loves sitting out in the garden. Jamie has a bad cough at the moment which always affects his bowel function but hopefully he will shake it off soon.

Thank you very much to everyone that has written to Jamie, Charlie and Keeley this month. Hearing from you all always puts a smile on their faces. Thank you so much to everyone who sent Jamie, Charlie and Keeley gifts this month, they love them and you all make such a difference. Thank you very much for Post Pals continued support, it makes a huge difference to our lives and it is fantastic to see the children smile when the postman brings them a treat from Post Pals.

Update 3rd April 2013

Jamie has had an up and down few months, but on the whole he has been coping well. He has had lots of days of exhaustion and dehydration when he has to be attached to his iv fluid and has to lie down and just rest. Also, a couple of weeks ago Jamie and Keeley both had the chickenpox and were both very unwell and itchy with it. Unfortunately it affected Jamie’s bowel function due to his short bowel syndrome and it went into overdrive due to the virus causing dehydration, which coupled with the usual discomfort, made him sad. His spots have now scabbed over much to his relief!

Jamie’s post has cheered him up enormously during this time – thank you. Jamie is going to Queens Medical Centre hospital to see his consultant next week for a check up/review.

I would like to say a really big thank you to Natashja for the lovely gifts and letters, we all love to hear from you and your little girl and really appreciate you thinking about us. Also, a big thank you to Bron from the Post Pals team for the Lego, Jamie absolutely loved it and has had hours of fun. Thank you also to the children from the Thomas Clapham School for the beautiful cards they made for Jamie, they were fantastic and he loved them. To everyone else who has sent post to Jamie and his siblings, we are very grateful and it brightens their day. Thank you all very much for your continued support, we are very grateful and Jamie and his sisters love receiving post.

Update 8th November 2012

Jamie’s condition remains the same. He is managing at home mostly with a lot of medical care with short hospital stays in between for dehydration and side effects of his illness. Jamie has had quite a few problems with his Hickman central line recently so we are hoping it is not on its way out as it keeps not bleeding back, flushing etc, but thankfully each time so far it has been successfully unblocked. Jamie gets tired very easily but is still smiling and hopefully he will remain stable, fingers crossed.

I would like to thank everybody that has sent Jamie (also Charlie and Keeley) post since he has been on Post Pals. It has such a huge impact, it really cheers them up. Thank you this month to Wendy for the special cards and to Claudia for the octonauts puzzle, we have had lots of fun doing it. Also to Sarah for the cooking set, the kids made some yummy cookies. Thank you for all of your fantastic hard work, it is really appreciated.

Update 30th November 2011

I just wanted to let you know that Jamie has gone into hospital. He is very poorly, bless him. He has enterocolitis which is a nasty bowel infection and is in a lot of pain. He is being brave but cannot eat or drink anything as his bowel has shut down and he keeps vomiting. Fingers crossed he will pick up soon.

Update 25th November 2011

Jamie has had a steady month by his standards, however his energy levels are still low and he has been to hospital several times with dehydration.

Thank you to everyone who has thought of Jamie and sent him a card, all the lovely cards and thoughts have really cheered him up. Special thanks to Wendy and Yukiko for the regular post, it is lovely to hear from you. Also, many thanks to Kate for the lovely presents that you sent to the children, they all loved them and the card that she sent me meant so much. Charlie would also like me to thank people for the post she has received and the gorgeous balloons – all three children had so much fun with them. Thank you to everyone who has made Jamie feel very welcome on Post Pals and also to Kate and Viks for everything they do. Jamie really looks forward to the postman coming which makes his day. Your post really helps to keep Jamie positive when he is having a bad day so thank you.

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Emma T

18 June 2012

Story written 2011

Emma was diagnosed with a Wilm’s tumour on 24th June 2011 after a lump appeared on her tummy. Her chemotherapy started on 27th June.

The thing Emma misses most is playing with her friends at nursery. She doesn’t have the energy to play physical games and prefers to do art activities and play board games.

Until Emma has surgery, scheduled for 23rd of August, we don’t know how much chemotherapy she will need but we have been told that it will be about 9 months worth. She is being very brave about having it.

Emma’s prognosis is good. She wants the ‘nasty lump’ gone. Emma has always been a determined little girl.

Update 26th March 2013

After talking to the family, we have decided it is time for Emma to move on from Post Pals.

It has now been nearly a year since Emma went into remission and we feel it is time for another child to receive the kindness and support that Emma and her sisters have received from all the wonderful people and supporters of Post Pals.

Words can’t express how much happiness and smiles you have bought into the girls lives during such a hard time. There are so many people from all around the world that we would love to say thank you too, but there are just too many to list. So all we can say is a massive thank you to you and everyone that we have heard from.

All the best for the future, Rob, Marie and our 3 princesses xxx

Update 18th February 2013

It has been a good month as Emma had her tests on the 23rd January and everything was all clear again. So the next lot of tests are in April.

We arranged for the girls to have a party for their birthday at kids zone indoor play area and they had a fantastic time playing with their school friends and cousin. We were going to do it for them last year but because of the infection risk we couldn’t, so it made it all the more special for Emma this year as she loves the indoor play areas. They got money from a lot of the family so they wanted to go clothes shopping. I was amazed at how quickly they spent their money on clothes, leaving only a couple of pounds for sweets!

Thank you everyone for all the things that the girls receive, especially when they get letters and emails from abroad. Thank you for all the lovely birthday cards sent to Emma and Amber too.

Update 16th January 2013

Emma was so excited about Christmas this year, as she could concentrate on it more than last year. She was hoping so much to get a skateboard and Santa didn’t disappoint her.

She had an appointment at our local hospital on the 14th just for a routine check up and the consultant was happy with her progress. She has an appointment on the 21st of January for her quarterly tests and fingers crossed all will go well.

A big thank you to everyone for all the lovely Christmas cards, letters and gifts, that the girls received. It all helped to make Christmas more special for us all.

Update 10th November 2012

October has been a fairly quiet month, apart from Emma having another lot of tests which thankfully where all clear, so we can relax again until her next lot in January.

She has settled in really well at school and her and Amber’s reading is improving every day.

The whole family got excited in the middle of October as we gained a new member of the family – his name is Casper and he is a staffie/spaniel dog, he is 7 months old and we got him from our local RSPCA centre.

We would like to say thank you to everyone who takes the time to write.

Update 11th September 2012

Emma is doing really well at the moment, she got the all clear in May, which was a great relief for us all. It felt like a giant weight had been lifted off us. She had a second lot of tests at the end of July, and again Emma got the all clear. She now has tests every three months and her next lot of tests are in October, so fingers crossed everything will be ok.

Emma has had a great summer, especially now she can enjoy the sunshine and running and playing with her sisters and her friends without having to worry about her line getting caught. We took Emma and her sisters to the beach over the summer, it was great just to see them all playing in the sand and the sea without having to worry about anything.

Emma’s hair is growing back in now, it has been a bit strange seeing her with hair after so long of her being bald.

She has now started back at school full time and is thoroughly enjoying being in year 1.

We are all getting excited as we are we are packing ready for our holiday to Lanzarote this month, as the girls want to follow in Dottie’s footsteps from when she went on holiday to Lanzarote last year and want to do everything she did.

They have enjoyed watching the Olympics and the Paralympics, especially as their older cousin was a torch bearer for the Paralympics. He brought it around for the girls to see and we were able to get photo’s of them holding it.

We would like to say a big thank you to everyone for all the letters, cards and gifts that the girls receive.

Update 9th April 2012

After a poorly start to the month where Emma had to have a break from her chemo due to low levels, she has started to pick up now chemo has started again.

She is now being home schooled as she found going to school too tiring, but she is keeping at the same levels as her friends, just missing playing with them. Luckily, Amber keeps her up to date with what is happening at school so she isn’t missing out too much.

We would like to say a big thank you to all the people that have sent cards and gifts as it always brings a smile to their faces.

Update 1st March 2012

February has been a hard month for us. Emma has had a few infections and we have spent some time in the hospital. She spent Valentines day in hospital and was so excited to get an anonymous Valentines card. It cheered her up so much. Coming home to another made her smile even more.

She had an ECHO test this month and we were very pleased to hear that the chemotherapy hasn’t affected her heart and she was chuffed because the sonographer gave her an image of her heart to take home.

As a result of the infections Emma hasn’t been in school and she misses going in. Thankfully she has been able to keep up as Amber brings some bits home. Due to the infections Emma’s levels have been very low and her chemo treatment has had to be postposed a few times. So having her most recent lot of chemo has really knocked her for six because it has been a while since she last had it.

Emma lost her first tooth this month. When it came out we were in hospital and when she woke up it was gone. She panicked as she couldn’t find it and finally discovered she was sitting on it. That night she put it under her pillow and was very excited about the Tooth Fairy coming, especially when the nurse told her that the Tooth Fairy had never come to the hospital before. The next morning she was very pleased to discover the Tooth Fairy had been and had left her some money.

Thank you for all the post and gifts that we’ve received, everyone is fantastic.

Update 9th February 2012

Emma had a fantastic birthday. Both she and Amber loved opening all the gifts and cards they received from everyone.

Emma has been quite well recently and seems to be coping well with everything. We now have an end in sight as she doesn’t have much more chemo left to go now.

She is still going to school in the mornings and is now learning to read, which she loves. She did have to take a week off earlier in the month as she had developed a cough but thankfully nothing came of it. It was slightly worrying as Amber had tonsillitis, which we thought Emma might catch, but she didn’t. We were worried for a little while as Emma’s blood levels dropped and there was some question over her needing a blood transfusion but thankfully her body dealt with it and her levels are all good again.

Emma has also been attending parties, both at school and with family. She loved being able to see everyone and have fun with people she hasn’t seen for a while.

Update 19th January 2012

December has been a very busy month for Emma and all the family. Luckily we didn’t have any hospital stays but we did have to have a dose of antibiotics for yet another chest infection. Chemotherapy is still going and she had the last dose of the long chemo in December so now she only has little ones.

This month Emma chose to take part in a Santa Fun Run in aid of the local hospice so all the family joined her. The children’s ward at the local hospital had their annual Christmas party and Emma and Amber had great fun seeing the magician and Santa and having their faces painted there. They were also lucky enough to see two pantomimes, one that the hospital organised and one in school. Emma loved being able to see them. Because Emma has been able to attend school most mornings she was also able to participate in the school nativity and was given the option of what character to be. She chose to play a shepherd.

Christmas morning in our house was great; the children were so excited opening every single present and card. So by bedtime they were thoroughly exhausted but so content.

Just after Christmas, Emma had her last big chemo and we were so pleased to discover that over the course of the holiday period Emma had put on almost 1kg which is fantastic.

She is also now taking part in The Beads Of Courage programme and we are also looking at getting Emma into school for 2 full days a week as well as mornings.

Thank you for all the Elf parcels as it made Christmas even more magical. We want to thank you for doing a wonderful thing for all the children.

Update 7th November 2011

Emma has now finished her radiotherapy course, but whilst having it she got a few infections so had to spend a few weeks in hospital. Hopefully her body is now starting to recover from the side effects and she is getting better. She is now on antibiotics for a chest infection.

Emma has managed to get back into school for a few mornings and has thoroughly enjoyed being back with all her friends.

Thank you to all of the people who have taken the times to send post, she still loves getting post, as do all three girls.

Update 3rd October 2011

Emma’s operation went well. It lasted 5 and a half hours and afterwards she was taken down to PICU, where she had to stay for a few days after developing a temperature. The tumour was larger than they thought as it was hidden up behind her stomach. The surgeons think that it is possible the tumour may have leaked and have decided to give her Radiotherapy as well as Chemotherapy. After 3 days she was moved back to a normal ward and was home after 7 days, feeling well and trying to get back to normal. The surgery left her tired for a few weeks but the scar is healing very well and she is now getting back to her bouncy self.

Since her operation, Emma has recovered well. She is just about to start radiotherapy but thankfully only has to have 8 sessions. She does have to have 6 months of Chemo as well.

She is looking forward to getting back to school and being with her friends and we are hoping that she can get back in for half days next week then start again full time once she is more settled into her Chemo routine.

I’d like to say a big thank you for all the post received.

Update 4th September 2011

Emma will be going into St George’s hospital in London on the 12th September ready for her surgery on the 13th. She should only be in for about a week, all being well. Emma is keeping very brave and can’t wait for the ‘operation to get rid of nasty lump’ as this is what she is calling it.

I just want to say thank you to everyone at Post Pals for all the smiles they bring to Emma and her sister’s faces.

Update 18th August 2011

Emma’s surgery that was scheduled for the 23rd of August has now been cancelled. We have been told that the chemo is working well and has shrunk the tumour but they want to shrink it some more to make surgery easier for Emma. Also, the lesions on the lungs are barely visible on the CT scan, so they restarted her on chemo on 17th August and did a chest x-ray as they want to see if the lesions on the lungs are visible. If they are, then Emma will need radiotherapy.

At the moment we do not know the outcome of the x-ray, but Emma has another 3 weeks of chemo and on the third one they will be doing another CT scan. Fingers crossed everything has worked as they hope so that they can rearrange surgery for the middle to the end of September. We are now back and forward to The Royal Marsden and our local hospital for the rest of the chemo.

I would like to thank everyone at Post Pals for all the letters, cards, and gifts that Emma and her two sisters have received. It always brings a smile to their faces.

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Aaron H

18 June 2012

Story written 2012

Aaron was unwell from the moment he was born and at five weeks old he was admitted to hospital with a bad cough and failure to thrive. He was then diagnosed with cystic fibrosis.

For the next four years we spent most of our time on the children’s ward. We were taught how to do his IV’s at home. Aaron takes around 50 tablets a day with nebulisers and two lots of physiotherapy.

Aaron had a recent stay in hospital with a bowel obstruction. My other two children are adults but missed out so much when they were younger as cystic fibrosis needs care 24 hours, 7 days a week.

Update 26th March 2015

On the 25th of March Aaron had his 16th birthday. He now feels the time is right to move on from Post Pals and give another child the chance of enjoying the amazing kindness and support he has had over the years.

He is just about to sit his school exams and is looking forward to the future. He continues to think positive and although cf is a life long battle, it’s one he will fight all the way.

Thank you to every person that has every sent Aaron cards, gifts, letters and thoughts. He has the most amazing cap collection from all over the world too. A big thank you to you to Post Pals, you do an amazing job and bring joy to so many xxxx

Update 8th December 2014

It has been a very long month as Aaron has been in hospital for a mountain of tests. We have had some of the results back and been told he is now pre diabetic.

Aaron is now back to playing football for our local team (part time) and studying hard for his GCSE’s in-between hospital visits.

Thank you to everyone for his post, you all have been so kind.

Update 17th October 2014

Aaron has now started back at school and is trying to catch up on all the work he has missed in the last 8 months. He is now in year 11.

He is still going in to hospital every 4th week for 4 days to have IV treatment and things seem to be going very well.

Update 18th August 2014

Aaron is back in hospital having iv steroid treatment. He was in remission for his ABPA (Allergic Bronchopulmonary Aspergillosis) but after only 12 weeks it sadly came back, so we have just started 6 months of treatment for that.

We have just had a lovely holiday in the sun as this is just what Aaron needed after such a bad winter.

A big thank you to everyone who has been sending cards and gifts from all over the world, it really gives Aaron such a boost when he is feeling so unwell.

Update 4th May 2014

Aaron is feeling much better now though the last 6 months have been the worst 6 months ever. He will be returning to school in the next few weeks (part time) but has to drop out of some of his GCSEs as the hospital feels all of them will be to much.

Thank you for all your love, care and support, over this difficult time.

Update 2nd February 2014

Aaron has had a really difficult 6 months after we found out he now has ABPA (allergic bronchopulmonary aspergillosis). He started treatment in October and has been on very high dose steroids since then. They have made him very unwell but we are now on top of the infection so should be able to reduce the dose soon. Due to the side effects Aaron has not been able to go to school since the end of November, but we hope that at the end of February he will slowly start back at school and a get back a bit more of a normal teenage life.

We would love to thank everybody for all the gifts and letters he has been sent and he’s had some amazing things from all over the world.

Update 23rd November 2013

The last year has been difficult for Aaron. On top of the Cystic Fibrosis and the ME, we found out why Aaron’s health continued to get worse. He has Aspergillosis which is not curable but it is treatable and that is a positive for us, however it does mean an extra 100 tablets a week. We think we are up to about 300 a week now, but Aaron never lets this get him down and is looking forward to getting back to school and sports in the New Year.

We have had so much post over the months and it is incredible, thank you so much each and every one of you.

Update 23rd October 2013

Aaron was taken poorly on our holiday and has not been right since. This week he has been in to hospital for tests and put on steroids as his lungs are not too good at the moment and his lung function has dropped again.

In the last few months he has received many cards and lots of gifts – thank you so much, you are all amazing.

Update 30th July 2013

Aaron has received lots and lots of post in June and July. He has been having a few good weeks and is going on holiday to Majorca in a few weeks time as the sun is like a tonic to him.

I would like to thank so many people for everything they send him. I will send pictures of the veg he was sent to grow (stripy tomatoes, purple carrots etc) as they are growing well.

The last month has been hard with Lizzie gaining her wings. We send on our love to all of Post Pals xxx

Update 4th April 2013

Aaron has been unwell now for 5 months and is only allowed to attend school 2 or 3 days a week. He came down with glandular fever in October and has just been diagnosed with CFS/ME on top of him having cystic fibrosis. His consultant said he will not be well enough to attend full time school until September/October. Once we have purchased Aaron his own laptop he will be  able to catch up on some school work from his bed. He has had to give up all sports and hardly ever leaves the house due to the extreme tiredness.

Thank you so much to everybody who has sent Aaron cards and gifts.

Update 7th December 2012

Aaron had a wonderful summer but has now been unwell for a while. His lung function is the lowest it has ever been and his weight has become a big concern, so he is attending hospital every 3 or 4 weeks. Aaron has just undergone a lot of blood tests too and we are waiting for the results.

At the moment Aaron is only attending school 2 or 3 days a week but is looking forward to Christmas.

We are looking forward to spring as Aaron always seems so much better in the summer months. For the time being he has had to have a break from playing for his local football team, which I know he missing so much.

We would like to thank everyone for taking their time to send Aaron cards, gifts, and letters. You really have no idea how much fun receiving post from all over the world is. Any smile he receives is worth its weight in gold.

Wishing you all a happy smiley Christmas.

Update 29th February 2012

Thank you so much for what you do – Aaron loves his post. We’ve had some from the USA, Holland, Germany etc – what great people.

Update 6th February 2012

Aaron is home from hospital now on high dose steroids. This takes him up to 60 doses of medication a day. Hopefully his lung function will start to improve soon.

Many thanks to all of you for post that has been sent.

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Zachary H

15 June 2012

Story written 2008

When Zack was diagnosed with A.L.L. in December 2007 we were all in a state of shock. His stomach had been distended and there was a possibility of Glandular Fever, so you can imagine our dismay at the actual diagnosis! All this just 10 days before Zack’s 3rd birthday and 15 days before Christmas. The hospital started his treatment immediately, but his initial reaction to all the drugs was dramatic and frightening as he fought for his life just 2 days later.

However, round 1 over, we made it home for Christmas, only for him to collapse again just after Boxing Day and we had an ambulance ride back to hospital. After staying in hospital for another 6 weeks, he finally came home in February, our bald little angel, and he was in remission! The light at the end of the tunnel became brighter! Off his feet due to the chemo, Zack now needs a wheelchair a lot of the time, but has had a few good months while the dosage was reduced (an Interim Maintenance period). April ‘08 saw the next intense Chemo start and yes, it was back to hospital again, 2 stays of around a week each.

If the A.L.L wasn’t enough, in the midst of all this, Zack was also diagnosed with something called Klinefelters Syndrome! This is a chromosomal disorder, which amongst other things, means our little boy also has speech delay problems and may have other learning difficulties in the fullness of time.

Towards the end of 2009, he was given several more diagnoses (mostly, but not entirely connected to the Klinefelters). We now know he has Dyspraxia (difficultly with fine movements), ADHD (Attention Deficit Hyperactivity Disorder) and will near certainly have Dyslexia as well.

And if all that’s not enough, he is also showing clear features of Autism Spectrum Disorder! So now we have a whole new raft of things to deal with (although it does make sense of many of the things he does – or doesn’t – do!). Life for Zack always seems to be an uphill battle but it should mean he gets a lot more help in his education.

Throughout all of this Zack has been a true little ‘trooper’. He still has difficulty in expressing himself due to his continuing speech delay, but seems to have taken everything in his stride. He takes all his own oral meds and used to help the nurses with his central line (now removed). Life has been turned upside down, not just for us as a family, but for everyone around us. It has hit everyone from work (I had to give up my job) to all family members, even ones we haven’t seen in years! And although he is now at a main stream school, it continues to be hard both for him, his teachers and his fellow pupils.

On a plus side, Zack is a ‘2012’ baby – he was born on 20.12.04. All children born on that date were eligible to register to be part of the ceremonies of the 2012 London Olympics and Zack has the certificate from them to prove it! All we need now is to make sure he’ll be there and taking part. Zachary – a boy so keen to love and be loved!

Update 14th March 2012

What Post Pals has done these past few years for Zack has completely and totally amazed us day after day after day!!!!! You have genuinely been the reason for SOOOOOOOOOOO many smiles on my son’s face – particularly in the dark depths of his illness – and for that we will be eternally grateful.

We can’t even begin to thank the totally amazing people who have been in touch with Zack for the past 3 or so years – you are ALL amazing! – but with Zack now being ‘officially’ referred to as a Cancer SURVIVOR, it is time to let other children still battling a whole host of problems have your attention! Please continue to put smiles on the faces of children who really need your help. Take it form a Survivor – it REALLY makes a difference!!!!!! THANK YOU ONE AND ALL!!!!!!!!!

And a final thought… the latest results are Zachary:1, Cancer:NIL !!!!!!!!!!!!!!!!!

Update 12th January 2012

Zack had an amazing Christmas – amazing in that it was ‘NORMAL’!! Ignoring his first two Christmas’s (because he was too young to understand them), the last four have been spent with him ill and/or in hospital, so a complete Christmas at home – no medications – no over tiredness – no hospital trips, it was BLISS for all concerned!! Just a shame he had to get to seven for it to happen! But get there he did!!

In mid-December, two local charities arranged for him (and Dad!) to go to Lapland to play in the ‘Magic’ Forrest in the snow and meet Santa in Santa Land – INSIDE the Arctic Circle!!! What a day – Snowfights, Snowmen, Reindeer Sleigh rides, Huskie Sleigh rides, Skidoo rides, more snow, Santa, dinner and MORE chocolate and gifts than you can shake a stick at!! A fantastic and memorable day!!!

And so now we are in 2012, hopefully our first complete year without the dreaded ‘Big C’ and associated drugs! It has been a truly rotten 4 years for Zack and all of us (not self-pity, just fact!), but here’s hoping that is all behind us now!! We still have a lot of fights ahead of us over all his other problems, so we may not (yet) have won the war, but Zack appears to emerging triumphant from this battle!!!

As ever – thank you to ALL who have shown an interest in Zack – I KNOW I’m biased – but he really IS one special little boy!!!

Update 8th November 2011

Well, it has been a very long time since our last update and I apologise to everyone for that!

So, what has happened in the last 6 months? Well, following the death of Zack’s Nana, we all headed of to the USA for most of July to sort out ‘affairs’, but then we took the opportunity to go to Orlando and spend two weeks having fun! Unfortunately, the Disney parks turned out to be a little to much for Zack who experienced several ‘melt downs’, but overall we all had a great time there.

August saw us off for a week at CLIC Sargent House in Prestwick again, where – as always – everyone was wonderful. Zack got a chance to try horse riding (loved it!) and to hold several Owls (even Toby got to hold a little one!).

We also moved home in August, so things have been really busy round here! Which means Zack has been through a LOT of upheaval, but I have to report that he has taken it all relatively well and has settled in his new home with little to no problems! His health (cancer wise) has been really good, although we did have (unfounded) suspicions that it had returned at the end of October! I guess we will be on ‘nerve ends’ for some time yet!

His other health issues continue and he starts with the ‘proper’ Autism panel later this month – it will take around a year, but (hopefully) make a big difference. He is going from strength to strength at school and, although well behind an ‘average’ nearly 7 year old, he is doing really well!

AND A SPECIAL MENTION – his school put Zack forward for the Wolverhampton Pride 2011 awards – and Zack WON the Child of Bravery award. We all got dressed up in out ‘best’ a few weeks ago for a special ‘do’ to receive it!

So Zack hits SEVEN in December – it’s hard to believe that it is almost FOUR years since his diagnosis for A.L.L.!!!! As always, thanks to absolutely everyone who has taken an interest in our little boy – whether this is the first time you have read about him or if you have ‘followed’ him for years – or anywhere else in between – it really DOES make a difference to all of us here!! THANK YOU!

Update 4th May 2011

Hello everyone! A lot has changed since Zack’s last post! Most importantly – on March 23rd Zack had his (hopefully) LAST EVER chemo!!!! We are now just on ‘follow ups’ and monitoring!! Hoooooooooorrraaayyyyyyyyyyyyyy!Of course, now all his other ‘problems’ take centre stage and have to be more urgently dealt with. Many had to be ‘held’ due to the chemo drugs and the effects anything else may have had on them.

Zack is doing incredibly well at school and things generally seem to be on the ‘up’ for him!

Sadly, his Nana (who lived in the USA) died last week and so Mum has had to travel out to deal with everything. She left a week ago and won’t be back for another 3 weeks. Due to his other issues, routine is VERY important to Zack and so, although he HAS been quite good here with Dad and Toby, things have been a bit more of a struggle for him and will be for a while yet.

So life for Zack goes on!! Hopefully, the cancer will stay away and we can start to rebuild a more ‘normal’ life for him!

As always, a million thanks to EVERYONE who has EVER sent Zack so much as an email – every single thing has been lovingly welcomed – it’s true – postie REALLY HAS brightened up a sick little boy’s life these past 3 years!!! His ‘battle’ is far from over, but hopefully it gets easier now!

A special thanks to all you wonderful girls at POST PALS itself – you do an incredible job – especially with your own issues as well – so we cannot thank you enough for everything you have done for Zack and all the other kids too!!!!

Update 6th February 2011

January passed by smoothly for Zack – no major health issues, the chemo’s (including his quarterly visit to Birmingham for a BIG chemo) went well and everything else is fine.

This improvement in his general health can also be seen in other ways, particularly his mood! He has been sooooooo good these past few weeks – he has even received two ‘awards’ from school for good behaviour! And he has won a ‘Duckling 2’ certificate and badge for his swimming!! I can’t describe how proud we are of this amazing little boy!

Unfortunately, it has been Zack’s brother Toby’s turn to stay in hospital – twice! Both times were down to viral infections that have made it very difficult for him to breathe (it was quite scary!), resulting in regular nebulisers and then inhalers plus steroids for the second attack! So although we are pleased that Zack has done so well, we are a bit fed up that we STILL end up spending too much time in hospitals!! Oh well, hopefully Toby’s ‘thing’ is over now??!!

Zack has finally been given his ‘final’ dates for chemo – the week of March 6th for his monthlies and then March 23rd for his final bone marrow check to make sure everything is ok. Then – NO MORE CHEMO !!!!!!!!!!! We are sooooooo happy and can’t wait!

As always, thanks to everyone who has been in touch with Zack at anytime, but obviously January in particular – he had some wonderful post this month! If you could only see the smile that spreads across his face when he knows he’s got ‘Postie’!!!

Update 12th January 2011

Overall, a generally great month in December and a fantastic start to 2011!!

Zack thoroughly enjoyed the Snowdome and was genuinely ecstatic when he saw Santa! So we then knew that for the first time in his 6 years, he really ‘got’ Christmas!!

But then our ‘good run’ ran out with a hospital admission at the start of December for what turned out to be yet another ‘unspecified’ infection! It really does come as a ‘smack in the face’ to be so rudely reminded of his illness when he has had such a good run! The good news is that we got it out of the way BEFORE Christmas and for the first time in 3 years Zack wasn’t ill over the holidays!

After his hospital stay, we all got a treat from Acorns Hospice and Ryan Air by means of a ‘Santa Flight’ from Birmingham Airport! Zack had a ball (we all enjoyed it – even Toby) and met Santa yet again!

Then we celebrated the 3rd anniversary of diagnosis. Followed swiftly by his 6th Birthday! And again, for the first time since diagnosis Zack was in good health and able to really enjoy himself! Mum made him a special Guitar Birthday Cake which had fireworks on it – he loved it!!

And then there was Christmas itself! If there was any problem, it was simply that it was still all a bit too much for him! By mid morning, with half the presents opened, he had had enough (he was in ‘overload’!) and so the unwrapping was suspended till after dinner (much to Toby’s disgust)!! It took a few more hours to open the rest of the gifts under the tree.

However, we were not done yet! On Boxing Day Zack opened the myriad of Post Pals gifts he had been sent but was just too tired to open on Christmas Day. And there were a few for Toby too! What a lot of truly fantastic gifts Zack and Toby received from everyone at Post Pals. Thanks so much (again!) to EVERYONE! Zack so enjoyed opening all his gifts and then playing with each and every one – we think he actually understands now what they are about (that complete strangers have found it in their hearts to be so kind) and it means a lot to this wonderful little boy.

We are so lucky to have Zack here with us, tired or otherwise, and look forward to next Christmas when he will hopefully have been off his Chemo for 8 months or so!

And now here we are in 2011!! What a fantastic start to the year we have had. A wonderful Charity called Adam’s Hats arranged for us all to go on a short holiday to a place called St Brides Castle near Haverfordwest in south west Wales. What a place!! It even had its own indoor pool which Zack frequented 9 times in the 5 days we were there! We ALL had a truly lovely time, even managing to spend time on the beach (all wrapped up of course!). A HUGE thanks to everyone who made it possible – it really meant a lot!

But now we’re back to schooldays and chemo!! But GOOD NEWS – after Zack’s main monthly chemo at hospital in early January – he only has another TWO to go!!!! Hooray!! He still has a major ‘do’ with Birmingham Children’s Hospital and will have monthly follow-ups for a long time to come – but NO MORE CHEMO!!!! We can’t wait!

As always, thanks to EVERYONE who has been involved with Zack in any way over the past few years, it has been a very trying time!

Of course, his ‘troubles’ are far from over. We are only now beginning to realise how much the Klinefelters Syndrome will probably affect him throughout his life, but with the right help and support he (and we!) will get there!!

Update 24th November 2010

November is nearly over and no hospital stays!!! (Touch wood etc…!)

Another ‘quiet’ month in Zachary’s life – even the lumbar puncture went as smooth as could be! So I have nothing to really report healthwise.

Zack continues to improve in every other way – learning, sleeping, speaking – everything! So we are all really pleased here! And (thankfully) that is all there is to report for the month so far!

However, this week sees him going to see Father Christmas at our local Snowdome (and a good old play in the snow!) and in a couple of weeks, Ryan Air will take him and some other lucky kids for a flight over the UK (and Santa will also be there again too!).

Zack may turn 6 in December, but with the learning and health difficulties he has had in his short life, this is his first ‘true’ Christmas. He understands who and what Santa is and even understands the basics of the religious significance as well – so he’s getting really excited! It is soooooooo joyous to see our little boy being a ‘normal’ little boy getting excited!

Our continued thanks to EVERYONE who keep in touch with Zack – that’s something else he has learned to be really excited about – post with a Z on it!!!

Update 31st October 2010

October started with a short stay in hospital (with the usual unspecified infection!) but then got better!

It has been a real month of changes for Zack – one brilliant one involves his sleeping routine. Since his initial hospital stay (now an incredible three years ago – almost!), he has had huge separation anxiety at night time, meaning that Dad sleeps in his room with him – every night! Also, because Dad hasn’t wanted to go to upstairs at Zack’s bedtime every night, Zack has spent the last 3 years falling to sleep on a beanbag in the living room for the first few hours. Any changes to this have led to a terrified little boy!

Well, towards the end of October, one evening Zack asked to go to bed. Mum volunteered to go to ‘her’ room if Zack went to his. Previously, this has always been met with an angry “No”, but he said yes! Thinking he would follow Dad straight back downstairs, we took him to bed and – amazingly – he stayed there (as long as he knew Mum was in the next room). He’s managed this for over a week now!!! He has also started to go upstairs during the day to play in his room ON HIS OWN – something he would never have done even a few weeks ago!!!

And this is just two of many changes that we have seen in Zack in the last month – our little boy is finally not quite so little any more!! And we couldn’t be happier!

Health-wise, after the initial ‘blip’, he has been in great form – not even suffering too badly from his monthly chemo! But he is due his quarterly trip to Birmingham Children’s Hospital for the dreaded Lumbar Puncture (and general anaesthetic) in the next few days. Ho hum! Overall though it’s been a brilliant month and he’s loving (and doing well at) school!

Update 29th September 2010

September has been a pretty good month for Zack. His new school is excellent and he is really enjoying himself there! He even enjoys going to school and back ‘on his own’ on the school transport!

Health wise, it has been a good month and he has generally been on top form, although thoroughly tired at night after his hard days at school. The last week has been a bit harder due to his monthly Chemo, but that is just to be expected.

Zack has received a lot of post this month, so our thanks go out to all of you as usual for being fantastic people!!

Update 30th August 2010

In short, August started badly but got much better!

With just 5 days to go to our CLIC Sargent holiday in Scotland, Zack spiked a temperature and ended up in hospital for a stay – there was talk of him not being allowed home in time, but he managed with just 17 hours to spare before we set off on a 300 mile drive to Prestwick! The first few days there were not what they could have been. Zack was still not feeling at his best and still recovering from his hospital confinement!!

But by Tuesday he had got past all this and had a ball for the rest of the week (as did Toby!). They both got to play with all the other children whenever they wanted and we even made friends with a family that only live about 15 miles away from us! Now we have been back home for a week and we all wish we were still at Malcolm Sargent House!

It’s all back to normal now though. Zack had to have his monthly IV chemo this week and Kerri has never seem him react so badly to events! He screamed and fought like there was no tomorrow – it took his Mum, 3 nurses AND a Doctor to restrain him to get the cannula in! This has never happened to this degree before, but I think that after such a good week (because of his low blood counts, he hadn’t needed to take any of his meds while on holiday – except for a few pain related ones) he resented it all starting up again. Thankfully, when it was all over, he acted like it had never happened, but it really upset Kerri. We are now sooooooooo much waiting for all this to be (hopefully) over next February!

In the early part of September, Zack starts his new school! He is quite excited – as are we!!

Update 3rd August 2010

Overall, what a good month July has been! Zack has generally been in the best of moods and had only low levels of pain right up to the last week of the month when both his monthly AND quarterly chemo kicked in (meaning two days in two different hospitals for treatment – including a general anaesthetic for a lumbar puncture!). Plus, his monthly 5 days of steroids and greatly increased pain levels! Still, all that is beginning to wear off now and he is calming down again.

This month he got his first ever bicycle and he soon got the hang of it! Plenty of pads and a helmet in case he falls off (only once so far!) but he really loves it! Unfortunately, it was Toby who had a fall this month – resulting in a butterfly stitch smack between his eyes. Zack was great with him though, although he does obsess a bit with blood etc – can’t say we blame him after all he’s been through!

Soon we will be back up in Scotland with CLIC Sargent, trying to have the seaside holiday he missed out on last year (see 30th August 2009 update). So fingers and everything else crossed that he has a great time this year (and us and Toby too!).

As usual, everybody has been incredibly kind via Post Pals and Zack has had lots of Posty – which always cheers him up no end! And Toby got his first bit of mail too! So thanks to everyone!

Update 30th June 2010

June started well enough and Zack even managed a day at the seaside and various other treats! Unfortunately, by mid-June, things had really taken a (thankfully temporary) turn for the worse.

Zack has frequently been exposed to Chickenpox this year but we had always been aware of it enough in advance to ensure that he got the required medication to reduce the chances of him getting it. Well, this time he had been exposed and we didn’t know until the spots started!! Thus we had an extensive stay in hospital on IV drugs as Chickenpox is very dangerous in anyone who is immune compromised. It is really annoying and upsetting that it is the treatment that causes this – not the illness!

Things got very serious for a while but he’s back home now and restarting school as well. So another huge scare but at least it’s behind us now.

Unfortunately, the end of June was also the Post Pals party and a local charity – Acorns Hospice. Zack had been looking forward to both but was unable to go for fear of the possibility of infecting other poorly children – a risk we just weren’t prepared to take.

Still, July is with us now and we can only hope that he will have an enjoyable month! He finishes in his local school and prepares to go to the new special school in September, so things are going the ‘right way’.

Thanks to everyone who got in touch in June – Zack especially got lots of post while he was in hospital and it was all very much appreciated.

Update 15th June 2010

Zack has spent the last few days in hospital with a severe temperature but was allowed home last night. Unfortunately, another BIG temperature saw him readmitted today where they are now confident he HAS chickenpox – which is of course a great worry, although he is in the best place for treatment. He is now on IV antibiotics and antivirals and will mean he’s in hospital for at least a week and then stuck at home for longer than that.

This also means that sadly we won’t be able to make it to the Post Pals party this year.

Update 30th May 2010

As our last update said, May started badly for Zack with him needing huge doses of anti-virals due to exposure to Chickenpox and then both his monthly and quarterly visits to hospital for heavy chemo. Inevitably that resulted in a ‘run down’ Zach for a while with much school missed. And then we had to contend with the possibility that his Leukaemia had returned! Thankfully, it hasn’t, but it was a tense time waiting – especially since at the same time they thought his brother Toby might have it too!! Again, he hasn’t!!

After such a worrying start to the month, it all got better!! The second half of May has seen Zack reasonably pain free (as best as we can tell), although in the last few days he has started to need pain relief again. He has made it to school most of the time and has enjoyed running around and playing in the garden in the sun.

Unfortunately, we start the monthly chemo again next week and he has to go into hospital for an MRI on his legs to try to find out what is causing the above average pain levels he experiences – yet another general anaesthetic! So hey-ho… here we go again!!

As ever, the postie is being kept busy bringing things to Zack, who seems to be beginning to understand the significance of it all, as well as being excited that he has received something – so thanks to one and all for your wonderful support!

Update 2nd May 2010

Wow! What a month for Post Pals! Thanks as always to everyone who has been writing to Zack for a long time now, but following the Russell Howard show, I don’t think our Postman likes us anymore!!! Within about 24 hours the emails started arriving and a few days later the post started!! Zack has had sooooo many letters and gifts it is impossible to thank everyone individually, but please know that every single thing, no matter how small or brief, has brought a smile to Zack’s face! THANK YOU ALL SO MUCH.

Healthwise, the month had been going reasonably well (of course, the usual chemo rages and aches etc) and he even managed 5 days without any pain meds!! We were a touch worried about it being the ‘quiet before the storm’ and we were sort of right. Two weeks ago Zack was exposed to Chickenpox at school and has had to start a massive two week dose of anti-virals that make him feel generally unwell and give him a stomach ache.

A few unexpected visits to hospital have also occurred, most recently yesterday, resulting in a confirmation of conjunctivitis (eye infection), meaning he now has to have two weeks of eye drops that sting (we tried them!). This is one thing that really frightens him and we have to do it 4 times a day for the next fortnight! And it really is a fight – he get’s so upset but we have to do it anyway! Hopefully, this will all be over soon and he will have a decent May.

Thanks yet again to all the posties and the wonderful people who make it all possible at Post Pals.

Update 11th April 2010

Zack has had an ‘up and down’ sort of month. When he’s been ‘up’ things have been pretty good, but when he’s been ‘down’ …!! He has had lots of post though which has really given him something to smile about.

His pain levels have been all over the place, from a handful of relatively pain free days, to times when he has trouble even standing and frequently falls over due to aches and pains. AND he still finds it almost impossible to tell us he’s hurting – we have to try and second guess him!

On the good news front, there has been quite a bit in March!

With all his learning needs, Zack has been allocated 15 hours specialist help per week in school, meaning that a specialist helps Zack with his learning as he is slipping further behind every day. However, even better news is that in the new school year starting September, he goes to a special school dedicated to his needs! This is a school that fully understands and caters for his educational needs and instead of being in classes of 25+ children per teacher, the maximum class size is 10 – with 3 teachers! We were a little concerned at first that Zack needed a special school but now that we’re used to the idea, we know that it will be brilliant for him and help him achieve his best potential.

As always, we would like to thank EVERYONE for the interest and love they have shown our son, but we would like to give three REALLY big thanks to Acorns Hospice, React, and the Family Fund who have all been fantastic in supplying extra help to make Zack’s life a little better!

Update 28th February 2010

Firstly, a HUGE thanks to EVERYONE who has sent something to Zack. Thanks to Post Pals, he can finally recognize his name (well – the Z at least!) and chases into the hall every time the post arrives! If only you could see the smile on his face when he recognizes there is post for him!!

February 2010 saw our Zack coming ‘back’ to us! After a dreadful start to the year in January, Zack has been a lot better this month and has even regained most of the weight he lost (and he looks so much healthier for it!).

The old twinkle in his eyes has more or less returned and his devilish laugh is back on full form! He is still in considerable pain but the meds seem to be controlling it reasonably well. We just wish he somehow found it easier to express the level of his pain, but he is still unable to do this. The doctors have agreed to reduce some of his chemo drugs (one in particular) to see if it helps his pain levels and so far it looks like it has. Of course, this means we have to be more vigilant for other things as a result!

He has even made it back to school! He only managed 4 days there for the whole of the first half term, but made it in for three days last week (and one of the missing days was because he’s had to go to see his doctor!).

We are now simply crossing everything that he can have an easier ride for a while!

Update 31st January 2010

January has been a bad start for 2010 for Zack. Unwell over Christmas, he continued to be unwell throughout the month, indeed he only managed to go to school for 4 days in the entire month. Towards the end of January, Toby was christened, but Zack looked very pale on the day and was continually complaining of owwies (pain) and this culminated in a blood transfusion and a hospital stay for pneumonia.

With his temperature yo-yoing like crazy, IV antibiotics and lots of serious pain killers seem to have finally caused the illness to ‘break’ and he seems to be getting a little better now.

He has had everyone (including his doctors) worried this month and not even directly because of his A.L.L.

It’s now the last day of January and the old Zachary ‘twinkle’ is starting to show signs of returning. We hope that February will get him back on form and we can move more positively into 2010!

Update 3rd January 2010

Zack had a great Christmas (with special thanks to everyone who got in touch and sent cards/gifts etc) and managed to stay out of hospital for the entire festive period and enjoy himself. Sadly, he wasn’t entirely well as he had a “tickly tummy” and ended up being violently sick (all over Dad!) on Christmas day and on Monday 28th (all over Mum’s car!). It didn’t spoil Christmas Day though and although it took quite a while to open the presents (it was all a little overwhelming for Zack), he had a ball!

Unfortunately, the sickness (and the ‘other end’ too!) continued, culminating in Zack being admitted to hospital on New Years Eve for an overnight re-hydrating drip. Infact, Dad and Zack saw the New Year in with the cannula being inserted in Zack’s arm! Oh well – he saw the year out as he saw it in – in hospital!! Hopefully 2010 will be a better year!

In other respects, December was a reasonably quiet month and we hope that that carries throughout 2010. Thanks to EVERYONE who has shown Zack support throughout 2009 – he looks forward to hearing from everyone in 2010!

Update 19th December 2009

On behalf of Zachary H, we would like to thank EVERYONE who has been in touch these past two years since his diagnosis.

With Zack about to celebrate his 5th birthday on Sunday, he has been very, very lucky to have such wonderful people to keep putting a smile on his face!

Thanks once again.

Update 10th December 2009

Today is the second anniversary of Zack’s diagnosis of Leukaemia! We are so proud of our little boy and what he has put up with and achieved these past 104 weeks!

Recently, the wonderful people at Post Pals sent us a special Chinese lantern that you have to light and when the paper balloon fills with hot air it lifts off into the sky. To celebrate, we went to a local park and ‘lit up’! It took a while to fill but then took off high into the sky and soon became a ‘star’ in the distance! It was fantastic (probably scared a few people wondering what it was too!).

Thanks to everyone at Post Pals for making our son smile with great regularity – you are doing something so wonderful, you should all be so proud of yourselves! And also a HUGE thanks to all the wonderful people out there in the world who have taken the time to get in touch with Zack – you can’t begin to imagine the difference it makes!

Let’s hope he has just one more year left of the illness and then we ‘just’ have to deal with all the other stuff!!!

Update 1st December 2009

It has been a reasonably quiet month for Zack. Inevitably, he has come into contact with various children at school who have Swine Flu and so has had to have the vaccine and a course of Tamiflu.

With 3 months of school now behind us, it is becoming obvious that he is steadily falling more and more behind. Various ‘experts’ are trying to sort out various levels of help, but unfortunately, this all takes time and so Zack won’t be getting the help he really needs until sometime next year. With the various new diagnoses that we had last month, all the problems he’s having now make much more sense! Unfortunately, these problems will always be with him to some extent or another.

But, as always, he does his very best to be a happy little boy (of course, the various chemo drugs he takes can make that a real challenge) and everyone who gets to know him still falls very much in love with him.

Zack has received some wonderful cards, letters and gifts in November, so thanks to every kind soul out there! Finally, this month sees his second anniversary since diagnosis and we can’t begin to explain how happy we all are that we get to celebrate his 5th birthday as well – we consider ourselves to be very lucky!

Update 1st November 2009

Health wise, it has been a ‘good’ month for Zack – no temperatures or unexpected hospital visits – a wonderful change to August!!! He has also been in a generally good mood for most of the month too!

However, we have been given yet more disturbing news this month regarding his long term future. As well as the Leukemia and the diagnosis of Klinefelters Syndrome, he has now been given a few new diagnoses (mostly but not entirely connected to the Klinefelters). We have now had it confirmed that he has Dyspraxia (and will near certainly be dyslexic as well), but he also has ADHD (Attention Deficit Hyperactivity Disorder) and is showing clear features of ASD – which is Autism Spectrum Disorder!

So now we have a whole new raft of things to deal with (although it does make more sense of many of the things he does – or doesn’t – do!). But it should mean he gets a lot more help in his education. Poor Zack, it just seems to keep piling up on him!

On a happy note, he has had lots of ‘Posty’ in October, including lots of gifts, both from Post Pals and others. As always, thanks so much for your kind thoughts.

Also in October, thanks to Post Pals and Legoland, Zack enjoyed a wonderful day out at Legoland Windsor. He really enjoyed his day there and in particular the ‘Digger’ section where he got to actually use a ‘JCB’ – boy he loved that! A fantastic day out and all thanks to Post Pals!

Update 1st October 2009

Phew! What a relief September has been after the dreadful August! With no hospital stays, reasonable health AND starting school (and enjoying it!), Zack has generally been a much happier boy this month. We have had the usual fun of the monthly steroid rages which left his new teachers a little bemused at his sudden and intense changes of mood, but at least WE are used to that!! Now we just need to get his pain levels sorted (he is in some level of pain every day) and have to start considering more seriously his learning delays caused by the Klinefelters Syndrome – there’s always something!

A HUGE thanks goes out to everyone who responded to last months posting, Zack’s appearance on the TLC page and his being a featured Pal. He has received an immense amount of mail and love from you all. If you could only see the smiles on our little boys face, you would realise just how special you all are, both to Zack and all the other kids on Post Pals!

Update 30th August 2009

What a month – we are in no rush to have another one like August! In our last update we said that Zack had 3 hospital stays and no one seemed to know what was going on.

August was supposed to be special – CLIC Sargent (Children’s Cancer Charity) had wonderfully provided us a weeks stay at their fantastic ‘hotel’ at Prestwick, about 35 miles south west of Glasgow. We arrived on Saturday the 8th and it is truly a fantastic place staffed by great people. Zachary quickly found the music room (full of every kind of instrument) and fell in love with it. Unfortunately, by the Monday we were up in Yorkhill Childrens Hospital in Glasgow where he had to have a transfusion and he (and Mum) stayed until Friday when he was transferred back to our local hospital in the Midlands! Worse was the on-off diagnosis that the leukaemia had returned!! That was agonising but Birmingham Childrens Hospital was able to confirm it hadn’t the following week. That was a hard week and a half – after all, if it HAD returned – this time we knew what it meant – real bad news. So the holiday Zack had really been looking forward to never came to be.

Back home, he was released from hospital with the usual diagnosis of an unspecified infection (either bacterial or viral!) but was re-admitted again 3 days later where he stayed for another 4 days and another transfusion. Back home now (we’ve managed a week so far!), we still don’t really know what’s happening, but whatever the infection is, it is really deep seated and we don’t think we’ve seen the end of it yet.

After so many months of relatively no problems, this has come as a real shock and Zack has responded by becoming very dependant on us and gets upset even if left in a room alone for more than a moment or so! Although he tries to be his happy little self, he seems to have become more self-aware of his illness and it can really upset him.

On a plus point, he (hopefully) starts school properly in September and boy does he look gorgeous in his school uniform. With his hair all grown back, he’s even had a haircut in readiness!

As ever, Post Pals have been fantastic throughout and Zack has received a lot more post than of late – so many, many thanks to everyone who has contacted our son – we can promise it really makes his face light up when the postman calls!

Update 3rd August 2009

It’s been a mixed month for Zack. When he’s been well, he has been as good as could be expected. We were able to attend the Post Pals party on the 4th July where he had a wonderful afternoon and we got to meet some amazing people!

Unfortunately, he has also had 3 admissions to hospital in July, including a prolonged stay in isolation with suspected Swine Flu (thankfully false!). Trying to explain to him why everyone we met wore masks and aprons was not easy due to his learning difficulties and left him scared. Then for his last visit they had no spare rooms and so for the first few hours we had to wait in… the Treatment Room. As Zack knows only too well what the room is used for, we had a very unhappy and panicky son on our hands!

And after the 3 stays – no one is any the wiser as to what’s wrong! His temperature has spiked then plummeted and is now stable, but he is in lots of pain most of the time. He is on a constant rotation of Codeine, Paracetamol and Ibuprofen! Hopefully this will pass soon.

Please keep Zack in your thoughts – we are sure it will all be ok, but for the first time in months things have become much more worrying than normal.

Update 3rd July 2009

Health wise, June was uneventful – no unexpected hospital trips etc, so that was pleasing. The effects of Zack’s Leukaemia and Klinefelters is now becoming more pronounced as his tempers become stronger! Life is becoming a daily challenge where Zack thinks he can win! He is a child who HAS to be busy – he just can’t sit quietly and read a book – he must be doing something. As Terry Scott once said – “He’s only good when he’s asleep (but you don’t know what he’s dreaming about, do ya?!)”.

On an up note – we have to express our sincerest thanks to Post Pals, the NIA in Birmingham and the childrens entertainers – The Wiggles! Zack has had a strong fascination and love of The Wiggles for some time now. When we found out that they were playing the NIA, we contacted Post Pals to see if they could help us get a meet and greet. Within a few weeks, the NIA had donated tickets (we had not expected that) and The Wiggles had agreed to meet Zack before the show! And it all came together on the 23rd June.

Wow – what a day. Zack couldn’t believe it! He was quite star struck – didn’t say a great deal to them, but was so impressed that he had met them. Then the concert itself was great – lots of Zack singing his heart out and general merriment!

So a massive thanks to Post Pals (Vikki in particular) for helping to arrange a spectacular and memorable day out!

Update 1st June 2009

It’s fair to say that most months are a ‘bit up and down’ for Zack! Overall he has had a quiet month but some unexplained vomiting resulted in a short and anxious stay in hospital. We never did find out what caused it all though!

Dad had a week off work in May and so Zack became joined at the hip with him and they had a great time, even managing a trip to the seaside for a day. Zack loves the beach and dipping his toes in the sea!

As always, a big thank you to everyone at and involved with Post Pals for all the happiness you bring to ill children everywhere! It really makes a difference.

Update 8th May 2009

Yet another mixed month – up and down health wise (but generally up!). Not much more to say about Zack’s health this month. However, Zack now has a brother – Toby – born 24th April.

Zack has been amazing! We really expected a green eyed monster as he has had Mum all to himself for such a long time (particularly since diagnosis!), but he has been brilliant. He’s even desperate to bathe Toby and even change his nappy! There are the odd flashes of jealousy but overall Zack has made us proud.

Update 31st March 2009

Another quiet sort of month for Zack. His blood counts keep bouncing all over the place thanks to the drugs and he ended up with another bout of hospital visits due to a severe respiratory tract infection (a bad cold!). He has a constant runny nose and a horrendous cough, but otherwise he is ‘getting on’ with living.

His learning is coming on thanks to everyone who works so hard with him at nursery and we just look forward to seeing him grow to adulthood!

We’ve had a quieter month with the post as well, but none the less the letters and gifts keep on coming and keep him smiling! They keep amazing us as well. In particular, thanks to someone’s generosity, Post Pals sent a wonderful brown teddy bear that he likes to hug!

Update 1st March 2009

Zack has had yet another varied month. Apart from the usual Chickenpox scares, Zack was doing fine until the final week of the month, when an unspecified infection put him back in hospital for 5 days. You can ‘pretend’ that everything is fine and (with his new head of hair) that your child isn’t even ill, but a stay in hospital brings it all back! That and the fact that this time he really didn’t want to be there! He has developed a disproportionate fear of nurses and doctors (although now he has to have cannulas again we don’t wholly blame him!).

Still, other than that stay, he has had another good month. The post continues to arrive and keeps him smiling and he manages to make most days to nursery if he doesn’t have any other appointments etc. He is undergoing many sessions and assistance for his learning difficulties caused by the Klinefeltes etc and has just had some special shoes to help with his walking and balance.

One particular piece of post of note in February was a hand stitched cushion from ‘Stitches of Love and Kindness’ that was completely unexpected and wonderful. The kindness of strangers keeps going on and never ceases to amaze! Our continuing thanks to everyone.

Update 1st February 2009

What a month January turned out to be! NO hospital stays (although Zack has come in to contact with Chickenpox again and so is back on huge Anti-Viral meds) and he had his Hickman Line removed mid-month – hooray! Now he can play like a proper little boy again without having to worry about pulling his line out etc.

But the big event of the month was courtesy of the RAF. As you can see in Zack’s interests (above), he likes helicopters. Now when we say likes – make that LOVES! A chance meeting at a day out at the Air Museum at RAF Cosford led to him being invited to RAF Shawbury (near Shrewsbury) for the day – a helicopter training centre!

A few days after having taken his line out, we went to the base where Zack got to visit the Air Trafic Control Tower, play on the Fire Engines (and put 5 small fires out!), ‘fly’ a helicopter in the full size flight simulator AND had a flight in a real helicopter! In addition to all of that, 60(R) Squadron who had invited him on to the base for the day presented him with his very own flight suit with his own name badge and everything! He was ecstatic!

The kindness and generosity total strangers are showing to our little boy never ceases to amaze us. Thanks to everyone yet again!

Update 2nd January 2009

We NEARLY had another ‘quiet’ month (medical wise) but unfortunately Boxing Day (26th) saw Zack back in hospital for 3 days for an unspecified viral infection. A bit of a let down after Christmas Day (we had to head off the hospital at 12.30am!), but at least this year Zack got a ‘proper’ Christmas and thoroughly enjoyed himself. And that’s on top of an excellent Birthday a few days before!

His hair is now decidedly noticeable and he keeps pointing to it! He has been put on a waiting list to have his Hickman (Central) Line removed, although that will mean a Cannula every month for the hospital administered Chemo! Oh well – we’ll just be glad that he can play properly again and not have to be scared of pulling his line out!

Zack’s Birthday and Christmas Day were fantastic, with all the family turning up on the 20th to celebrate – Zack couldn’t believe his luck at all the attention and gifts he was getting! Prezzies!

The past 12 months has been a real rollercoaster ride – from the terror that was diagnosis and the first few months when he was really ill, through the intensive chemo sessions and the hospital stays that followed, as well as the times when things have been a little better. We have seen him start ‘school’ (nursery) and also seen an amazing amount of love from total strangers via Post Pals etc.

We are far from the finishing post yet, but – everything being equal – we will get there and Zack will have a long, happy and successful life! Thanks to everyone for your thoughts, care and prayers.

Without being too repetitive (!) we would like to offer our sincerest thanks to EVERYONE who has taken the time and trouble to send Zack a card/letter/gift in the last six months but particularly in December – it has made such a difference to Zack but also to us to know that so many strangers care about our little boy!

Special thanks also go to Zack’s Elf who picked some amazing Christmas gifts for him and also for the wonderful letters from the Reindeer! We ‘string’ our cards up on our wall for Christmas – this year we had two strings for us and five for Zack!

Update 1st December 2008

Another reasonably quiet month for Zack! Although he did have a trip to hospital due to tonsillitis.

With the worst of the treatment now behind us (hopefully) Zack is finally getting a head of hair again! Hooray – and in time for his 4th Birthday and Christmas too!

Many thanks once again to everyone who has been so wonderful to Zack in 2008, the cards, letters and gifts have meant so much to us all.

Update 1st November 2008

October has been a mixed bag! Zack finally took the last of his intensification drugs and even avoided any further stays in hospital! Then he had to have a short stay of medication due to a cold which meant he actually went 6 days without ANY dugs whatsoever – not even any pain relief! He hasn’t had any drug free days at all since diagnosis and it was great not to have to give him any.

Of course he’s now back on the maintenance drugs and it will probably be another 2 years before he is drug free again, but my, how it felt wonderful!

With the worst of the drugs out of the way, the light at the end of the tunnel just got a little brighter and we can only hope and believe that things get better from here. With Zack going to nursery 3 hours a day (and enjoying it), it is starting to feel all like a very bad dream that we are beginning to wake up from.

Once again we owe great thanks to Post Pals – both to everyone who sent Zack something in October and to everyone ‘behind the scenes’ who make it all possible. It is always nice to see him race to the front door and find something addressed to him! Thanks everyone.

Update 1st October 2008

September has been a difficult month. Zack has been on the 3rd (and hopefully last) intensification period of his chemotherapy and this time has reacted strongly! The most obviously noticeable effect has been all his ‘new’ hair falling out again but his ‘Steroid tempers’ and eating demands have been incredible.

He is now on the last part of this dose of Chemo and the nurses have told us to expect a hospital stay in the next week or so!

On the positive side, we have our fingers crossed that in the next week he will move onto the final (all be it 2 years) of maintenance drugs and life can begin to get back to some sort of normal. A small measure of that normality is that Zack started ‘school’ (nursery) and after a fraught few first days he is now keen to get there and enjoy himself.

In addition, he has received some wonderful letters and gifts in September, most notably a beautiful quilt from Quilts 4 Leukaemia. So thanks to everyone for the wonderful efforts you all make.

One final bit of news is that around April next year we are going to have to add a name to the sibling part of his page! Yep – he’s going to be a big brother!

Update 3rd September 2008

Unfortunately since I updated yesterday Zack has ended up back in hospital due to a temperature of 39C that they can’t get down. It’s not wholly unexpected during an intensification period of chemo, but an unwelcome event non-the-less.

They are trying new antibiotics and taking more blood for cultures. In truth, I don’t think they really know what to do, so doing ‘something’ seems to be the only option to them! That sounds like I’m moaning but I’m not – they really are great nurses and doctors looking after him.

Thanks once again for all the work and effort you all do on behalf of Zack and the other children – it really means a lot!

Update 2nd September 2008

August has been a mixed month, as we expected! The first half was good as Zack was on very little drugs, but with the re-introduction of a raft of Chemo in the second half, things have definitely got a lot more ‘moody’ here!

The famous ‘Steroid Rages’ are back with us once again and Zack is definitely feeling ‘under the weather’. We still another 5 weeks of intensive drugs to go!

On the plus side, we hope Zack will be starting school (nursery really!) in the middle of September and that this will help with some of his learning challenges.

Update 10th August 2008

July was another (almost) quiet month for Zachary (thank heavens!). He has been on the lower ‘interim’ dose of chemotherapy and was due to start his final intense dosage at the end of July. However, catching Chickenpox and a two week massive dose of anti-viral meds means not starting the chemo until mid August.

The lack of meds has meant Zack has been more of his ‘old’ self, but unfortunately that will all change again in the next few weeks (with some lengthy anticipated hospital stays too).

We can only hope that this is the last of the big drugs and we will see a steady improvement after they finish in September/October.

Wow – what a month for post! With Zack having been a featured pal, he now runs to check what the post woman has brought each day! A BIG thank you to EVERYONE who has found the time to put a smile on a little boy’s face. We are trying to get back to everyone we can – forgive us if it is taking a little longer than we expected.

Update 1st July 2008

June was a relatively quiet month for Zachary. He has finished his latest round of intense chemotherapy and is just on a small daily dose until the end of July – his hair is even starting to grow back! Without all the chemo, his pain has dropped significantly and he is even getting more confident on his feet again. So for a while we hope we can have ‘our’ Zachary with us who can enjoy this part of the summer, without the need for much pain med’s and NO unexpected trips to hospital!

Thank you to everyone who has been in touch with Zachary – we have tried to respond to everyone who gave a return address – it is VERY much appreciated! It is wonderful to see Zack smile! Zachary has suddenly become interested in when the Postman is coming! As I have said before – what a brilliant idea and how kind of all of you to do it on behalf of ill children everywhere! Although he is too young to fully understand why he is getting the posty, it really cheers him up and anything that can do that is brilliant!

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Toby B

15 June 2012

Story written 2006

Toby was diagnosed with Stage 4 Neuroblastoma in September 2003. He was treated at the John Radcliffe Hospital in Oxford and had 6 months of chemo followed by surgery to removed the tumour in March 2004 when he was 13 months old. Due to the spinal cord compression caused by the tumour, Toby now has problems with his bladder and bowel and also has lower leg weakness, which means he has to use a little frame to get about. He has just had surgery to put his hip back in its socket and was in a hip spica cast for 4 weeks. He also had some tendons removed in his right foot to help it stand flatter – again due to nerve damage.

Toby has a big brother called Sam who is 7. He has had a lot to put up with since Toby was first diagnosed – this happened a day after Sam first started school. He is a lovely boy though and very thoughtful and looks after Toby very well! Although some days they do fight like cat and dog!!

All in all Toby is a fantastic little boy who doesn’t let his disabilities get him down. He always has a cheeky smile on his face and manages to wrap any nurse around his little finger!

Update January 2008

Toby remains well so we are “moving on” from Post Pals. Thank you to everyone who has written to Toby and Sam.

Update 1st December 2006

The children are getting very excited about Christmas! Thank you for all the cards this month, we have had quite a few from abroad!

Update 2nd October 2006

Toby is doing brilliantly, he is now walking without his frame (although still a little wobbly!) He has 3 visits to Oxford this month for his MRI scan on 13th, Urology dept on 11th and then Oncology clinic for results of the MRI on 26th Oct.

Update May 2006

Toby has had the “all clear” from his oncologist in Oxford who has said that it is now highly unlikely that the Neuroblastoma will return – yay! Many thanks to the Post Pals team; it really is a great thing to do.

Update May 2006

We got the results today from Toby’s MRI scan last week and they are brilliant – No Evidence of Disease!!! We are over the moon! This is now 2 years in remission from Stage 4 Infantile Neuroblastoma. He also had a good appointment with Orthopeadics and after having an Xray which showed that the pelvis and hip have healed properly, he said that we don’t need to see him for another 3 months. When we go then we will speak to the consultant about Toby’s spine as he does have a slight curvature in it, just so we know when to expect anything to happen regarding that. Then we went to The John Radcliffe for his Urology appointment and the consultant again was very happy with how Toby had been doing, I have to do some studies on him to see how much he is weeing in his nappy, then to sit him on his potty and then to catheterise him and see how much he has left in his bladder – so it is all a bit of a fiddle but it will mean we will have a better idea of what’s going on. Apparently, bladders can shrink back to a normal size so we are hoping that this has begun to happen now. So all in all a fantastic day – I cannot believe it!!!

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Tarrick-James M

15 June 2012

Story written 2007

T.J was born 12 weeks early and was very sick. He spent a long time in hospital but got better in the end and came home. He had suffered from a bleed in his brain so we were warned he maybe disabled.

T.J was diagnosed with Cerebral Palsy at 9 months old; he was a late developer and didn’t walk until he was 4. He finds lying on the floor pushing his toy cars and lorries really easy though.

T.J has splints and built up shoes and although he can walk he spends most of the time falling over. T.J suffers with tightening of his hands and legs and is sometimes in pain. He loves to play with magnetix though, as he can push them together really easily.

T.J has a beautiful smile and is a very loving boy and always has a good word to say about everyone. He is a pleasure to have.

Update 6th June 2009

Teej has been really good and he is walking without any sticks for the time being. He is just so brave and gets on with it without moaning on.

He has had talks with the high school and he is very concerned about going and he has said so. I think he really wants to stay at primary school forever and never grow up. It must be really scary for him.

Teej is getting better in himself and he tried last night to get in the bath by himself. He is growing so fast and really wants to try these things out.

He is very pleased at the letters, postcards and gifts that he has been sent and wants to say a huge thank you, as when he is feeling down there is always something to cheer him up. Special thanks to Percy for his letters and the Lego and a big thank you to Lorraine for the Wii game as we are having lots of fun with this.

Update 30th April 2009

Teej got his new trainers and they are perfect. He is actually really tall which surprised me, but he is still struggling to walk. We were told yesterday that he will need to use walking sticks for a long time to come as he is swinging his legs instead of bending his knees and putting strain on his back. He is always saying his back hurts and I thought it was because he does too much. He is so disappointed at having to use sticks; he just wants to be like everyone else.

We also have to look in to his schooling as he is due to start big school in September and if he has to use sticks he will not be able to go in to main stream, so maybe he will be best starting in a special school rather than moving him once he is settled. We will have to do what is easiest for him and we are going to wait and see how he copes with his sticks first.

I haven’t updated the blog for a while as my PC was poorly and went in for repair and I lost everything, but I now have a memory stick just in case.

Teej has had some letters from Percy the poodle and he loves reading about his adventures, he should have his own book. A lovely lady called Sue sent him lots of postcards and a lucky piskie which he has under his pillow (and both the girls one too) so thank you for taking the time to write to him, it really means a lot to him that people take the time to write. Thank you everyone.

Update 10th March 2009

Teej has been having such a hard time struggling to learn to walk again. I never thought that he would do it. At first he had to just practise standing up and seeing him cry with pain broke my heart. He then went on to a child’s zimmer frame and again struggled with this. Over the last week he has got a walking stick though and he is doing brilliantly with it.

He has just had his pots off and his legs are still sore, his muscles are really weak and skinny, but he is determined he will be running by September when he starts big school.

His feet and legs are in the perfect position and he has got a new pair of fantastic splints that are so well made and support his legs brilliantly. This is the first time since he was born that i have seen his legs and feet in the perfect position.

He is waiting for his trainers to come back with a raise on as it is really obvious now that one leg is longer than the other as he isn’t growing properly, but hopefully with this shoe raise you won’t be able to notice.

He has been so bored just sat doing nothing and has been really crabby, but now he can take steps he is a much happier little boy. He can also go to the toilet alone now which makes him so much happier. He isn’t in as much pain and looks so tall stood up straight. He sees the specialist at the end of the month for a check up and fingers crossed everything will be ok.

He received a quilt today and it is so sweet and lots of hard work has gone in to it. He decided he needed to go and lay down straight away to try it out, bless him. He sends a huge thank you for his quilt, it is stunning. Thank you to all the stitchers out there who took the time to make this fantastic quilt.

I also wanted to say a special thank you to Vikki for sending us parents smiles too, they were delicious and really unexpected.

Update 6th January 2009

Teej had his legs operated on just before Christmas (21st December) and he came home the same day. He has been in a small amount of pain and he cannot put his feet down at all, so it has been very hard and frustrating for him. He hasn’t been able to play with any of his toys properly and this is getting to him a bit.

He has spent most of his days sat in his chair watching DVD’s or reading. He is getting very bored and annoyed with this. He has big heavy pots on and to cheer him up I am letting people write on them.

I do feel a bit sorry for him as he is used to being able to move around when he wants to. Toileting is a total nightmare for him, but I am trying to stay positive and think when this is over he will be able to walk properly. He is just so lonely – he went to school this morning and we are hoping that he lasts the day, he will be around all his friends and he won’t get bored and the school is wheelchair friendly so he can be moved around safely.

I just wanted to say a huge thank you to all the Post Pals (and a big lick for Percy) that have sent him cards, letters and gifts. He had the best Christmas ever and the amount of things he received took his mind off not being able to move.

Update 18th December 2008

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

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

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

Update 1st December 2008

T.J is just waiting for his operation date which should be before Christmas. He is going to have both of his legs straightened so he may be off his feet for a long time. He is a bit nervous about this as he doesn’t like anesthetic but is excited on the other hand as he will be able to run!

He needs to have it done this year as he starts his Sat’s at the beginning of next year and needs to be ok for those.

He is doing really well at school and is making really good progress. He has spent the afternoon at big school and enjoyed it, although they don’t have a lift and there was a lot of stairs that tired him out. He said he cannot wait to be big, but will be sad though as he likes primary school. We decided he would do a few afternoons at big school with him being so nervous about going and we are trying to squash his fear.

The problem with his arm has been found out. At some point he has fractured his elbow and it has set itself wrong and cannot be repaired without a lot of pain. We had a good think about this and think it must have happened at the beginning of the year when he had his operation and the pain killers have masked the pain, but we cannot really pinpoint it as he falls over all the time and never really shows the pain.

He is so excited about Christmas and cannot wait to see what Father Christmas brings him. We put the tree up yesterday and I always save the last bauble for him to do. He sat waiting really patiently for about 3 hours to do it. We wanted to do it early in case he goes to hospital early.

Update 1st November 2008

T.J. had some bad news earlier in the month – he has to have an operation on both feet. We cancelled it so he wasn’t off his feet for his birthday and now we are just waiting for a new date. He didn’t realise that he would have to have both feet and legs done at the same time, so he will be off his feet for a long time, and we are not looking forward to it at all. He is very nervous about it but I have told him once it is done it is done. We have had a stair lift fitted just for him so he will still be able to get around the house.

T.J. has just celebrated his 11th birthday and he got so much post and I still have to pick things up from the post office. His birthday and all the mail that he received has made him a very happy little, or should I now say big, boy. He had letters, cards and gifts and was so surprised by them. Thank you to you all for making him a very happy boy and taking his mind off what it going to happen.

I have started a blog for the children. This way each time they get a letter, I can put it up so that you can all see just how happy they are, and there is a thank you to each person on there too. The link is listed above with T.J.’s details.

Update 10th September 2008

T.J has started the new term in his last year and he is very sad about it as he doesn’t want to leave primary school. He has been there for 8 years and he knows everybody. He is very anxious about high school, I have told him to enjoy his last year and not worry yet. He is also sad that the school term finishes just before Halloween and he will miss out on a Halloween disco for his birthday, but he doesn’t want a party!

Thank you to Becky for the very unusual postcard and thank you to Hayley for the frog card, he loved them both.

Update 7th August 2008

T.J. has still got a sore foot and it is hurting him to walk on it, but he has to keep walking on it or it will get stiff. I do feel sorry for him and mean but he needs to keep at it.

This last month has been a funny sort of month and with one thing and another it seems to have gone by so fast. He has got very tall and that always affects his walking and balance. We went on a walk with the dogs and he spent more time on his bum than on his feet, but he enjoyed it and with the sun he is looking a very healthy brown colour.

T.J. would like to say a big thank you to everyone for talking the time to write to him, he so enjoys getting post and it always makes him smile and feel important.

Update 1st July 2008

T.J. has been to see the specialist who is ordering tests for his tremors. He is concerned that they are affecting him now and he doesn’t know why he has got them. His arm is slightly tight and he cannot straighten it from the elbow – we are hoping it is just muscle but we will have to wait and see.

T.J. is on the waiting list the see the person who deals with the gene problem. He said he doesn’t mind x-rays or blood tests but he wants it in the holidays as this year he has not missed one day from school. It is the first time in 7 years he has completed a full year and this is because the school installed a lift and he is no longer tired.

T.J. had sports day last week, the school works in teams so no one is under any pressure and then at the end they do a race for fun. Well, T.J. did the race and although he came last he did it alone and all the parents, carer’s, teachers and children were clapping and shouting his name. He finished the race and was so pleased with himself and proud he had done it alone.

He has a very sore ear that is black and swollen. During a P.E lesson he accidentally got smacked across the head with a cricket bat. I spoke to him on the phone and he said he would rather stay at school then come home. Lee went to see him and said it’s very swollen, but he wanted to stay. I am so proud of him.

He is growing up very fast and getting very tall and doing very well at everything.

T.J. received a watch from Karen and he was very fast at learning to tell the time, so now he tells me it’s time for tea or time for a bath and he knows when it is his bedtime. I am very proud he has done this. He loves his watch, he wears it every day and it fit perfectly, so thank you.

Thank you for all his cards too, especially the one from Karen with Eddie that has pride of place. Thanks to Post Pals for the little box of goodies. Every time he gets mail he is so excited, thank you once again and big hugs to all the Post Pals.

Update 15th April 2008

T.J. has had a fantastic couple of months and is really growing up fast. He had his pot removed and his leg is almost straight now. He stepped wrong when coming out of hospital and sprained his ankle, but he is ok, he just cannot run as fast.

He has had so many cards and letters and he even got a koala postcard all the way from Australia which he loved and took to school so he could show everybody that it had traveled all the way just to see him.

He is learning to tell the time, he is very bad at it though and we are looking to get him a small watch that teaches you the time, but his arms are so small he may have to wait while he has grown a bit. He has finally parted with all his playmobil toys and is really in to Lego. This was something he couldn’t do before due to the tremor in his hands, but he has got so patient over the last few months, he will work really hard to create his master pieces.

He has grown quite big and just needs to grow another inch or two so he can get rid of his booster seat in the car – he said it makes him feel like a little boy and he is a big boy now!

I wanted to thank you all for the letters, postcards and gifts he has received over the last couple of months. His favorite is his Dr Who penny that is on his display shelf taking the best spot, so thank you Helen for that.

Update 30th January 2008

T.J has decided he loves Lego and has saved up his pocket money and bought a petrol station.

He has had a really good month and has been moved up to the top group in his spellings, which I am really pleased about. He had a weekend at his auntie’s house and I missed him like crazy but he loved every minute of it.

Update 3rd January 2008

TJ started the month sad because he lost his Nanna, but with the excitement up to Christmas he soon got over it. He has had the best Christmas ever and was showered with gifts and cards and a boomerang!! He said he didn’t want to throw it in case it went all the way back to Australia as he said they return when you throw them, bless him!

He still has gifts that he has not taken out of the box as he got so many things. He has asked me if when people send him things could they put their address on so he can make them a thank you card, as he was very grateful for what he got.

He has met his aunty for the first time and is really enjoying being part of a family now and he told me today he is the happiest he has been in his whole life!

I wanted to thank each person that sent TJ Christmas gifts, there is so many to mention here, but he got 19 presents and was overwhelmed by the kindness of all the people who sent them to him! He also had a string of cards all to himself, how nice it is to know there are caring people out there! Thank you to Wendy, Andrew, George and Anna, who have sent them from Australia.

As his mum, i have been overwhelmed buy the kindness and generosity of people we do not even know. TJ has really enjoyed the last year of receiving letters and gifts from people. Thank you to everyone.

Update 2nd December 2007

It has been a very sad month for TJ as his Nanna has just died.

I owe someone an apology as they sent TJ a parcel, but I didn’t get around to picking it up and it was returned, so who ever sent him it I am very sorry about that.

He enjoyed his birthday and enjoyed the disco at school and he even managed to stay until the very end!

Thank you to Wendy who has been emailing – I have had problems with my email but they came through ok.

Update 30th October 2007

T.J. has not had a good month this month. He has had a month full of sickness and spent most of it in his bed, bless him. He has just gone back to school but was ill again yesterday, although he managed to stay the full day so I was very proud of him… The lift is in and fitted but the outside needs a little more work before he can use it. It cannot come soon enough for him. We have given up on PE lessons as they just drain his energy and hopefully when he is fully recovered he can start again.

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

Update 10th October 2007

T.J has had a sad month. He has had to cut his school week down to 4 days – he just cannot manage the full 5 days as he is so tired, but hopefully after the holidays the lift will be installed at his school, which should take some of the pressure off him.

T.J. has been getting postcards from around the world. He is saving them all and putting a small coloured sticker on them and putting the sticker on the globe. It’s helping him to learn about the world.

We have a countdown going as it is his birthday soon. The school is having a Halloween party and he thinks it is just for his birthday. We also have a countdown going for Christmas – bless him, he is so excited and can’t wait but only wants one thing for each!

A big thank you from him to Julie this month.

Update 17th August 2007

TJ has decided that he loves postcards and has asked me if he can collect them. He is saving them all and putting them in a flip album, whilst learning about the world…

TJ has had a really good time this month and has been really well and he has grown a little bit too. This has to be a first for him – a good month and a growth spurt!

He has just been for another eye test and his eyes have got a little worse, but he said he doesn’t mind as his new glasses are really cool!

He wanted to say a big thank you to everyone who has posted him letters, postcards and gifts. He said he loves being part of post pals. This month he especially loved some cars that were sent to him – he has played with them non stop. Thank you to the person that sent them. He also loved some handmade pictures that were sent to him.

Update 1st July 2007

TJ has just found out who is teacher is going to be for September. He and his carer and are going to be spending some time with them so that the change over is smooth for him. He is very excited about this and can’t wait to start the new school year…

He came home on Friday with 7 certificates for good behaviour. It is so nice to see him getting on at school and how nice they are about having him around…

TJ has just decided that The Simpsons are brilliant and has a massive thing for Dr Who at the moment. He has just had his room decorated in planets and Dr Who themed things.

T.J has had postcards this week form all over the world he is so excited, it’s nice to know that so many people care…

Update 26th June 2007

T.J has just got over a virus that knocked him off his feet for a while. He has also had a growth spurt which knocks all his balance off, so he is very unsteady on his feet.

He got star of the week for helping another child at school and I was really pleased with him. He showed kindness after the other boy was hurt and upset.

He has just had some results which show he is making progress at school. This is the first time he has made real progress so he was really pleased with himself.

He has just bought a new Simpson game for his play station and I never see him now he is always playing it…

He is so happy at the moment; I would like this to last forever…

Update 10th May 2007

T.J is back up on his feet again after a really bad fall that resulted in a bruised bum and back. He gets so frustrated when he cannot do the everyday things others take for granted. He is on a school trip today and was really looking forward to going. He was the only one that got to go in the car, as it was a long walk and he said that made him feel special…

He is due to get some new splints at the end of the month. This means we will have to buy him some more new trainers and he just loves shopping for new things. He is unsure of what pattern to have on his splints and said he wanted something a bit different, that’s just him…

Update 7th April 2007

T.J has had a really bad month this month and has really struggled with keeping on his feet. He has had a growth spurt but I think he has stopped now. He has spent most of the month on his bum, bless him. He has got a cold that has lasted ages, but he is much better now.

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