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Henry's Little Heroes

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Day +37 ~ We had some amazing news yesterday. Henry's chimerism tests came back and show that his bone marrow is only 1% Henry and 99% donor, so there's officially 99% of super quality, functioning bone marrow in there working its magic! All of Henry's blood results have stabilised and he hasn't needed any transfusions since before we were discharged from the hopsital a few weeks ago. For the first time in his life, Henry's making his own red blood cells and after 55 blood transfusions in three years...the docs have said they're fairly confident he won't need a transfusion again. This is such a massive deal for us, we've spent the last three and half years waiting for Henry's blood results to be in the normal range and they finally are 😭. Today, we're having cookies and ice cream for breakfast to celebrate, because he absolutely deserves it🍦😋! Massive shout out to Henry's donor, whoever you are, wherever you are, for giving Henry this opportunity to shine. If you're inspired to sign up to help someone else like him, please register with @dkms_uk UK or @anthonynolancharity. Once again, thanks to @dba_uk for all their support and advice in getting us this far 💪 x

We're going HOME!!!! Henry's doing so well, they've kicked us out and we're en route back to Harwich 😱. He's still being sick very regularly and is going to the loo a lot but everything else is looking good so we're really excited to go home a lot earlier than expected. We've learnt how to give Henry all of his daily medicine through the NG tube in his nose and the rest of them he'll get via his wiggly (Hickman) when we go back for our multiple hopsital visits each week. He'll need a lot of medicine for at least the next six months so we'll be pros come the end of it 😉. Very much hoping we can stay out of trouble tonight and catch up on a little bit of sleep for the first time in a month ready for our trip back to St Mary's on Tuesday🤞 x

After a brilliant couple of days, we haven't had a good one today so here's a lovely pic of Henry with one of his favourite nurses from yesterday ❤. Slight setback, his pain relief and anti-sickness drugs were stopped yesterday and Henry has decided it was far too soon for that to happen! He's been really poorly today but they've put him back on the meds so we're pretty hopeful tomorrow will be better. As Henry's immune system is starting to work, we've been moved out of our penthouse accommodation (isolation) into a normal room! It's a lot smaller but we like it cosy 😆 x

Day +14 - BOOM! Henry has engrafted 🥳. His neutrophils (a type of white blood cell) are up to 1.4 today which meant we were allowed to bust out of the hospital for half an hour for a jaunt along the canal! Not home and dry just yet, they've got to keep a close eye on him to keep on top of any signs of graft versus host disease (new cells fighting the old cells) but all heading in the right direction ❤ x

We just wanted to say Happy International Nurses Day and say how grateful we are to have THE best nurses looking after Henry (and us, to be fair) both here and at home. Thank you for all you do for us, how you always go above and beyond and make everything you do look like a piece of cake. We count ourselves very lucky to have you all. Here's Henry with one of his faves from home 😉 x

DAY +10 - Sorry for the lack of updates, we've been weathering the storm this past week. Henry's feeling a million times better since the medication swap and is back up and about as of yesterday ❤. Thank you for all the lovely messages, cards, letters and gifts, they've really kept him going when he's been feeling so poorly. We have some excellent news today, HENRY'S NEW BONE MARROW HAS STARTED MAKING SOME WHITE BLOOD CELLS!!!! This is the first step towards engraftment and shows that his new bone marrow has made a home and has started working. Some of his hair has finally started to fall out this morning but we can't be too upset when we've got this marvellous news to cheer us up. Go Henry! 💪🥰🎉

Day +4, normal service has resumed 🙈

Day +3 - Thanks so much for your messages, we really appreciate it and I'm so sorry we haven't had time to respond to all the comments as yet. Generally, Henry's doing well. He's been struggling with mucositis which is making his mouth, tummy and bottom very sore, so we've had to crank up the morphine a little but he's managing ok. He hasn't been able to eat or drink much for the past week so he's being given nutrition directly into his vein which will also give his tummy a little rest. He had this when he was a baby so we know the drill! He's having a platelet transfusion today, his nose has become quite bloody and sore from his NG tube so we're hopeful it might help with this. All completely normal and expected though, his doctors are really pleased with him and say he's doing really well so far 😊 x

Happy Bone Marrow Birthday Henry 🎈! Henry had his transplant this afternoon, all courtesy of a lovely stranger who selflessly donated their bone marrow and will forever be part of our family. Henry is so much better today, after his transplant he was dancing around the room to Cbeebies and sword fighting with his Lego whilst chomping on chocolate cake, they were even able reduce his morphine dose a little. That's the Henry we know and love ❤. Taking each day as it comes, but today was a very good day x

Tough going at the moment. Day four of chemo and day two of the immunosuppressant that's making Henry quite poorly. He's struggling to eat or drink anything now and is being sick quite a lot, all to be expected. He's in quite a bit of pain with his tummy so they've started him on morphine but it's all taking its toll. Feels like we've lost our Henry for a little bit but we know he'll be back soon 🤞😊 x

Well, we're all settled in to our new 'hopsital' home. Henry started his 5 days of chemotherapy yesterday and is handling it like a champ so far 💪 , although they've told us he'll propbably be quite poorly from tomorrow onwards so we're making the most of today. He's doing really well but keeps looking out the window and crying to go outside which is making us all a bit sad 😔. We've told him it'll be really soon but he's not buying it! We think some post might really cheer him up, if anyone would like to write to him, our new address is:- Henry Alderson Grand Union Ward St Mary's Hospital QEQM Building Paddington London W2 1NY We'll let you know how he gets on tomorrow x

We've made it to our London digs! We were half expecting a phone call over the weekend telling us it had been postponed again but it hasn't happened, so as far as we know we'll be admitted tomorrow and treatment will begin. Thanks for sticking with us, we'll post on here as much as we can to let you know how he's doing but for now he's super excited to be here 💜 x

Not the Saturday night we'd hoped for, someone unclamped their Hickman line...😒. He's only had it a week and already broke it, haha! X

Hi All, sorry for lack of updates, Henry's fine, he's doing so well with his Hickman line and has been good as gold having it flushed and the dressings changed each week - here's the evidence it really doesnt bother him! We had a call a few days ago to let us know that Henry's transplant has been postponed by a few weeks, we don't mind too much as it'll give us a chance to enjoy Easter at home 🐰🐣🍫 (although we're under strict instructions to stay away from everyone so Henry doesn't pick up any bugs!). We had one more trip to St Mary's on Thursday and now that should be the last time we're needed in London until the transplant 🤞 x

Ta dah, we have a 'wiggly'! This will be used to give Henry all of his chemotherapy and other drugs he needs for his bone marrow transplant. He also had a sample of his testicle removed so it can be frozen and stored, in the hope they might be able to grow sperm from it in the future and he may be able to have children (the chemo is likely to make him infertile). We're really lucky to have been given that oppprtunity but Henry has been in quite a lot of pain with it so far 😳. Aside from that, absolute hero 🤩. Thanks very much for all the love, we always read all the comments to Henry and he appreciates them just as much as we do x

Off to theatre! Wish us luck 🤞

Last bath for a year! We're heading to Oxford for Henry to have his Hickman line fitted for transplant tomorrow, so it'll be speedy showers only from now on. We've had a really busy week, Henry had his 50th blood transfusion and lots of tests in London to make sure his body is up to the transplant. We had some not-so-great news about his heart, he's been diagnosed with a serious heart condition which is affecting how well his heart is working 💔. The good news is, he's been given the ok to go ahead with the transplant still, but we'll be lifelong visitors to the Royal Brompton from here on out and the prognosis is a little scary. We're down but not out, he's a tough cookie so we're sure he can handle whatever gets thrown at him 💪💗 x

Promised Jess I'd share this. She asked Henry if he'd like any toys to play with while he was having blood transfusion no.49 on Friday and he said "an astronaut"...🙈. Instead of saying "No astronauts here kiddo" she spent a good hour searching the ward for suitable supplies and helping Henry craft his very own robot spaceman 😄👍! He's beyond chuffed with it, thank you Jess, you made his day ❤. BMT will be bittersweet, we'll miss this lot so much when we don't have to come in for blood any more x

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