Skip to content

Henry's Little Heroes

Help us give Henry a future

Upcoming Fundraising Events

No upcoming events

Advertisements

FACEBOOK

FACEBOOK

INSTAGRAM

Day +104 - Cor, this is really tough going at the moment. Henry is just plain miserable on the steroids, thank goodness he's being weaned off of them over the next month because he's just crying constantly and nothing makes him feel better. Happy, cheeky 'pre-transplant' Henry seems like a distant memory and I miss him desperately. It's times like this I feel so guilty for going ahead with the transplant and really question whether it was the right decision. His platelets continue to drop, he's got new bruises popping up every day and bloodshot eyes and it's really horrible to have to just stand by and watch all of this unfold. I really hope the new medication starts to kick in soon, it doesn't work for everyone but Henry's had enough bad luck to last a lifetime so PLEASE let this work out for him. Operation on Friday, haven't told him about it yet as I think it'll be the final straw. Trying to remain positive but it's getting on top of us a bit right now 😭 x

Day +100 - traditionally, the day that marks the start of things getting a little easier post-transplant. While we don't really fit that criteria, we have to celebrate the good. We are extremely thankful for many things; 1. Our wonderful NHS and staff who continue to do a wonderful job at trying to make Henry better. We are so grateful to all of you and you will forever have our unconditional respect. 2. Our bone marrow donor. No words needed ❤ 3. All of you...our friends, family and extended facebook family. Your love and support has been tremendous (practical, emotional, financial). Henry has received so many cards and gifts from complete strangers whilst he's been poorly and we are extremely humbled. 4. We are still here, we are still fighting and have so much more left in us yet. All we have to do is look back at how far we've come already to know we're going to be absolutely fine 🙃👊

Day +98 - We're just escaping London after our appointment with our DBA wizard 🧙‍♂️ (Henry's consultant). He is confident that Henry has developed a complication called Idiopathic Thrombocytopenic Purpura (ITP). This basically means his new immune system is still learning how to behave and is getting confused and destroying all of the bone marrow's new platelets 😭. Not at all what we need. He said it happens in around 4% of transplants and he hasn't seen it for a few years so in true Henry fashion, it HAD to be him 🙈. Henry will have to have another operation next week so they can do another bone marrow biopsy and he has started a new treatment today which should help. We have to keep a very close eye on him due to the rate at which his platelets are dropping as it will put him at risk of uncontrolled bleeding while we wait to see if the treatment works. Once again, we're down but not out 💪. This is hard at the moment, he is tough but he is tired. My best boy x

***LOST*** **Platelets, last seen early July, reward if found...** Day +94 ~ Haha, we're still missing platelets! Down to 89 now, from 190 this time last month. Unfortunately the B12 injections have done nothing for the platelets but have really traumatised Henry, he's too scared to get out of bed each day because he "doesn't like the needles" 💔. He's been so brave throughout the whole process, we're just not used to seeing him so upset about something relatively minor in the grand scheme of all he's been through so far. Back to London on Wednesday for plan B (and hoping that won't mean another stay in hopsital 🤞😬) x

Day +83 - Sorry it's been a while, it's been fairly stressful these past few weeks. We had a run of bad luck at the hospital which meant we were leaving home at 7am to make the 100 mile trip and getting home at 11pm, twice a week 🙈. On top of that, Henry's platelet count has unexpectedly dropped, some scary potential problems were discussed so we had to have lots of tests to try and work out what was going on and it was all a bit of a worry. Thankfully, the tests for the really scary stuff came back negative so he's been started on B12 injections to see if that helps. This means injections in his bum three times per week which he's not massively keen on but hopefully it'll sort it. All other bloods still looking good, his neutrophils (type of white blood cell) are sky high due to the steroids and his red cell count is increasing all the time, his Hb was circa 120 this week 🥳! He's turned back into the little dollop we know and love on the steroids. He's got a huge appetite and is constantly asking for food, he's put on a kilo in weight in four days and is getting a bit frustrated. He's still having the odd bout of sickness and managed to vomit up another NG tube last week, it was quite traumatic for all of us as one end stayed in his nose while the end that's supposed to be in his stomach came out of his mouth 😱, all a bit grim. NG tube no.9 is now in state and we have everything crossed that this one stays put for a bit longer 🤞. We still have to go to hopsital twice per week for now, a side effect of his immunosuppression medication means that his magnesium levels drop very quickly. He has this replaced intravenously each time we go to the hospital and is taking very high doses of magnesium orally each day but it's not enough to keep it stable. It's probably what's causing the tummy ache but there's not much we can do until he can come off his immunosuppressants which is a long way off yet. Despite that, doing ok. Hungry, shouty and generally a pain in the backside at the moment (please send wine and ear plugs 😬) but worth every second ❤!

Day +64 - Apologies for the lack of updates, we haven't had any real news until today. We made it home last Friday, Henry was feeling much better so they let us wait for the results at home rather than stay in hospital. Results came back today and everyone was quite surprised to learn that Henry doesn't have GvHD in his tummy as they thought, but he does have some mild GvHD in his colon. That doesn't explain any of the symptoms he had (vomiting, weight loss etc) so we're quite lucky they decided to cover all bases with the biopsies and picked it up as he has no symptoms of colon GvHD (typical Henry, never straightforward 😬). They started him on a mild type of steroid a few weeks ago, they'll keep him on it for another two weeks and then wean him off and if all goes to plan, that should be the end of it. He's already feeling so much better and has gained 2kg in a few weeks 🐷! We haven't had the bone marrow biopsy results back yet but blood results looked brill today so onwards and upwards 🙌 x

No real news unfortunately! They weren't able to do the surgery yesterday as Henry was bottom of the list and got bumped. They're not sure when they'll be able to squeeze him in at the moment so have started him on some GvHD treatment in the meantime to see how he goes. As soon as we have a firm plan we'll let you know but we've got our favourite doctor on this weekend so we're content waiting for the time being 😊 x

And.....we're back! Henry's losing too much weight and we need to find out why. We think it's likely that he's just not eating enough, combined with being sick, although there's a chance it might be the start of some graft versus host disease in his tummy, so we're at the hospital for the foreseeable and he's scheduled for surgery tomorrow so they can have a look and see what's going on. He needed to have a routine bone marrow biopsy anyway to check how his new cells are doing (all looking good from that perspective) so they'll combine that tomorrow too 😊. We'll keep you all updated when he comes out of theatre tomorrow x

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

Advertisements

TWITTER

Privacy & Cookies: This site uses cookies. By continuing to use this website, you agree to their use.
To find out more, including how to control cookies, see here: Cookie Policy