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Henry's Little Heroes

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Back to the Mothership (St Mary's) today for our long awaited appointment with our DBA wizard. We didn't share the results from Henry's last bone marrow biopsy because we weren't sure the sample was particularly reliable but it was confirmed today that it showed less than 10% cellularity (only 10% of working cells). Henry's body has also started fighting back so his t-cells (part of his immune system) are now only 50% donor and 50% Henry...all of this is less than ideal 😬. He will have to have another bone marrow biopsy as soon as possible and if the results are the same, he'll need a top up of stem cells from his donor. His donor was kind enough to donate once so we desperately hope they would be willing to again, but this is obviously not a given. Despite this, his doc said Henry is doing well which is reassuring because our anxiety is understandably sky-high at the minute 😳. Please continue to keep us in your thoughts and keep the positive vibes coming, we still need them x

Good morning! #custardpie

Day +155 - What's that I see?! Platelets at 190 and Hb at 120, both completely in the normal range for the first time in months? Yes, yes it is 😆! X

Day +150 - So sorry for the lack of updates 🙈. Henry's having a hard time with the gut GvHD at the moment, we're not sure the steroids are really helping, they're just making him hungry! Saying that, he seems a lot more chipper on the lower dose and more like himself which is a huge relief. We continue to have big problems with his immunosuppressant levels, he takes it twice a day and his levels are checked twice per week at the hospital. It needs to be kept between 8-15, last week it was at 17, he's on the same dose this week and it went down to 3, which has everyone a little puzzled 🤷‍♀️. If the level is too high, it becomes toxic to his body, if it's too low, it makes his GvHD worse and he's at risk of rejecting the new bone marrow, it's a real balancing act. It also seems to affect his blood levels too, we have to be so gentle with his new bone marrow at the moment, it seems super fragile 😳. The excellent news is, his platelets are in the normal range for the first time in months!!!! Yes, we know it's all drug-induced but we don't care at the moment, we're taking it as a win 🥳. His red cells are still a bit rubbish but they seem to be stable for now, so we'll take that. He hasn't had any issues with his white cells so far, don't want to tempt fate but fingers crossed they stay where they need to be. Thanks for sticking with us, I'll try and be a little better at putting bits and pieces on here x P.s. look at the size of him, he's almost as tall as me...pretty sure he should be picking me up these days 😂

Been a rollercoaster of a week here 🎢. We've had bloods going down (boo), up (hurrah!), generally all over the place 🤷‍♀️ , immunosuppressant issues, liver issues, skin issues, lots of poo 💩, a bit of puke 🤮 and too many hours spent at the hospital! Thankfully, most of these are temporary blips and should settle down soon, we really are having to live day by day at the moment. Henry came off the steroids last week and unfortunately, the graft versus host disease hasn't resolved and is still going strong in his gut. He's got a lot of diarrhoea and tummy ache so he's back on the steroids at a lower dose to see if that does the trick, if not he'll have to go back to the dose he was on before. We can only hope all of this will work itself out over time and his new immune system will learn to live in it's new home without causing any more problems 🤞! #steroidlife #doublechin

Day +124 - Finally, some proper GOOD NEWS!!!! Turned up at Addenbrookes today and bloods taken as usual, half hour later the nurse comes in and says "we can't do anything with those bloods at the moment, the lab's on fire..."🔥😱! Given how rubbish Henry's bloods had been, they'd provisionally booked him in for a transfusion tomorrow at Colchester and sent us home to wait for the results. We just got a call from Henry's consultant saying that the bloods were back...his platelets are up to 59 and his Hb is at 103!!!!! So, I have no idea what you lot have been doing, positive vibes, prayers, generally asking the universe to give us a break etc but clearly, it's working, thank you 🙏. We know they can change in a heartbeat but this is the best bit of news we've had in a few months so we're taking it 🥳. Hurrah! 🤩 x

Day +121 - Gosh. Thank you so much for all your lovely messages and support over the past few weeks, they've made a huge difference to how I've been feeling 💙. Henry got admitted to Addenbrookes this week as they thought he might have an infection and they wanted to keep a closer eye on his heart rate and blood pressure, as they're both ridiculously high right now. He's had lots of IV antibiotics and they don't think he had a bug after all, but his blood pressure and heart rate are still very high (probably a combination of being low on blood and steroids). The good news is that although his blood results are still a million miles away from where they should be, his platelets have held at 40 and his red cell count is dropping a little slower than it had been. Still no answers and no plan, but it's better than last week 🤞. Henry's ok, he really hated being in the hospital this time but did find some joy in pretending to be Darth and using 'The Force' to ward off anyone who came near him with anything he didn't like the look of... We've got our fight back (Henry never lost his to be fair, only me 🙈) we'll keep going and do whatever we need to do, for as long as it takes, to get my little best mate to where he needs to be 💪 x

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

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