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Day +221 - Henry has his first IVIg infusion on Friday, it was a long day! He did ok, they dosed him up with antihistamine and paracetamol beforehand to try and stop any allergic reactions but unfortunately the IVIg made him really sick 🤮. He got some anti-sickness medicine and was able to keep going, although he carried on being sick after we got home and the meds had worn off. He spent most of yesterday asleep but seems to be business as usual today🤞. We had a call yesterday afternoon saying that some of his blood results from Friday were a bit squiffy so we needed to go back to the hospital to have them rechecked...we politely declined because Henry had just had enough. We've spent so much time at the hospital these past two weeks and he just needs a break (we're back there tomorrow anyway). We know he's neutropenic at the moment which puts him at even more risk of getting sick, just another sign that his immune system isn't able to do what it needs to do to keep him safe just yet. Hopefully when the steroids are completely out of system, his bone marrow can get to work at rebuilding. Small steps but we're still walking 😊👣 x

So sorry for the delay in posting, been a bit of a week 🙈. So, we went for our appointment in London, Henry picked up a virus while we were there which landed us in the hospital over the weekend as he was spiking fevers and was generally not a well boy. It looks like he's probably got a cold, but every fever means a minimum 48-hr hospital admission with iv antibiotics just in case it's a line infection/sepsis, so off we went. It does mean that all his bloods have taken a massive hit when we really couldn't afford for them to 👎. He is feeling rotten and it's so frustrating that we have to take him to the hospital twice per week but that's the one place that's most full of germs 🦠. In terms of the results from London, bit of a mixed bag. We had some excellent news that the cellularity has gone from 10% to 30% (still not great but heading in the right direction). Because of this, no cell top-up is needed for now, the hope is that by taking Henry off of the steroids, the cellularity might go up a bit more. We asked how the cellularity could go from 80% to 10% in the space of 6 weeks, they're not too sure but said it could have been the GvHD that just gobbled up all of his new bone marrow. The bad news is, Henry's immune system is not recovering at all so he will need to start monthly ivIg. These are basically immune cells from lots of different blood donors which should give Henry a bit of a boost and not leave him at such high risk of picking up bugs that he can't fight off himself yet (could've done with those last week really 😬). They couldn't find any active GvHD in his gut, although they did find some dead tissue which apparently is a bit of a concern, but he can't stay on the steroids for any longer. If it looks as though the GvHD is coming back, we have a plan to start some different drugs which should help but will knock out his immune system for a bit longer. Things are still very fragile so there's no plan for him to come off his immunosuppressant drugs for now, which means we're stuck in isolation for the foreseeable (8 months and counting, send box-sets and chocolate...😂). We're just hopeful that he can fight off this cold and it hasn't done a

THE biggest iv pole on the planet?!

Day +190 - Henry had his bone marrow biopsy and scope surgery yesterday. He was extra brave and didn't make a fuss about it at all! We also took the opportunity to get a nice new NG tube fitted too, so he pretty much had a full MOT and service. We won't have the results from the tests for about two weeks so we'll have to be patient and twiddle thumbs for a little longer before we can finalise a plan for getting these platelets sorted. There was some excellent news though, his T-cell chimerism has increased from 50% to 91%! I'll be honest, I'm not really sure what that means other than Henry's cells aren't fighting the donor's cells as much as they were, which has to be a good thing. We had a good catch up with our nurse who was very reassuring and said that Henry will get there eventually, he's just taking the scenic route...standard Henry, would never expect anything less 😖❤ x

Day +182, we're officially 6 months post-transplant. It's been a bit crap, you all know that...Henry is having to work extra hard to earn those transplant stripes! The good news is that Henry's in fine form right now and his red cells are holding steady at 125 (completely normal) which is amazing for a kid who has been transfusion dependent his whole life ❤. The less good news is that his platelets are all over the place and have steadily dropped below the normal range again which is a worry, especially as he's still on the medication to boost his platelet numbers. His biopsy surgery has been scheduled for next week so hopefully we'll have the results back and a plan in place within a month or so (can't come soon enough 😬). As you may know, Henry has always been obsessed with Halloween, it's Halloween all year round at our house 🎃! It's his birthday in a few weeks and before we found out he would be having a bone marrow transplant, we had booked him a Halloween/birthday treat to go and see his favourite film (The Nightmare Before Christmas) live at Wembley in December, we even managed to get front row seats! We were really hopeful that he would be well enough to go, but because of all of the complications and the risk that Henry would pick up a bug which could be potentially deadly for him (he's still immunosuporessed and can't mix with people), we aren't able to go. It's such a small thing in the grand scheme of what's going on but Henry's taken it pretty hard, he was really excited that he was going to meet Jack Skellington and Oogie Boogie and it hurts having to let him down, especially when he's missed out on so much already. Hopefully it'll all be worth it and we can make it up to him in time because this can't all be for nothing, I'm certain of that 🤞 x

We've had time to process Wednesday's news so just wanted to add a bit more info. The ITP diagnosis has been taken off the table in light of the crappy biopsy results, not sure if that's a good or bad thing really. The steroids have kicked in and have gone to work getting Henry's gut symptoms under control. The doc is no longer sure the gut issues are GvHD related so will be doing another endoscopy and colonoscopy while Henry is having his bone marrow biopsy operation. They have a hunch that it's more medication related than anything else so hopefully the biopsy will confirm and he can come off of the steroids altogether and his guts have recovered well enough to keep him comfortable🤞. It will be a huge relief if the GvHD has resolved but we don't want to get our hopes up too much yet! We were a little surprised to hear that they are considering fitting Henry with a PEG (a tube that goes directly into Henry's stomach) rather than sticking with his NG (nose) tube. The tube is only being used to give Henry his medication (he is on A LOT of it, several times per day/night and it's far too much to expect him to take by mouth). Because he's got so many ongoing complications, the likelihood is that he'll need to be on these meds for several months so their thinking is he might feel happier having a PEG fitted for this so he can have his NG removed. Quite honestly, we're not really up for a PEG at the moment, to us it just seems like an extra infection risk, more traumatic for Henry as it will mean weekly turning and dressing changes and will leave a permanent scar. He manages so well with his NG day-to-day and the current one has been in situ for months with no issues, so we're hoping to carry on as we are for now. He's been looking a little pale these past few days which is making us a little edgy, we're hoping his bloods haven't dropped too much but will have to wait until Monday to find out. He's having to put up with an awful lot at the moment and it breaks our heart that there's seemingly so much more to come. He really is the bravest boy 💪😍

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 ❤!

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