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Day +256 - "Let me out"!!! Right, well, this wasn't supposed to happen, I might have been a bit premature in rejoicing at how well he did with the IVIg 🤦‍♀️. Henry spent almost seven hours projectile vomiting on Thursday, everything came up, including his NG tube. Straight to the hospital and bloods showed his kidneys were in trouble so we had to be admitted and out on continuous IV fluids and IV anti-sickness meds, Henry wasn't thrilled. This is becoming a bit of a problem...his kidneys can't seem to tolerate being on his immunosuppressant at all now. . We have no idea what's going on with his other bloods, they've all dropped, platelets, reds and white cells are below the normal range. His Hb is in the 80s and still dropping, if it gets to 80 they'll have to give him a transfusion 😭. I think it would be easier if someone could tell us why, but nobody can at the moment. Given this is what happened last year and was a sign that his cellularity had dropped and his bone marrow had got eaten up, this is obviously our biggest fear right now (especially as he has been off his immunosuppression which might have given the GvHD time to take hold). . Back to the hospital and hoping for some answers one way or another. It's hard waiting on these when we know he's poorly and can't do anything to help him ❤. He's so pale and tired and we all feel a bit defeated.

Day +253 - Henry had his IVIg on Monday, we were all expecting the worst based on how poorly it made him last time but this time was completely different! He did great, no fevers, no sick and he was absolutely fine the day after too. Bloods on Monday were fairly alright, had them checked today and they were really not alright, which is weird, we really hope it was just a dodgy sample but we won't know until Monday. Henry's Addenbrookes consultant called just now to say his creatinine level (the kidney one) has gone up again so we're back off the immunosuppressants for 24 hours then restarting again at a lower dose. I think his little body has just been on them for so long that it's had enough. Can't say we're not all getting a little concerned about it now, but the consultant is SO lovely and she always makes us feel 100x better about everything so we're hanging on in there. . There are also concerns about the ongoing vomiting and weight loss, he's lost a few kilos since coming off the steroids (completely expected) but we would expect it to have slowed down by now with the NG milk feeds, we really need his weight to hold where it is🤞. He's looking so much more like 'Henry' again though, we've missed him! Some of his nurses found it pretty hilarious that his hair has grown back in the exact style it was before he lost it, he's a natural 'short back and sides' kind of a guy 🥰

Day +247 - Kidneys have improved!!! The break from the immunosuppressants and pumping him full of water clearly did the trick 😆. So, back on them and lots of finger crossing before each blood test from here on out. It will be SO GOOD to come off of these bad boys at some point, who knows when that will be, but if we've managed 8 months, I'm sure we can hold it together for a few more. We had a bit of a breakthrough today, Henry has been puking up an awful lot since restarting his meds. He was sick tonight and his NG tube flew half way out of his nose...for the first time ever he popped it back in his nose himself and stopped it from coming all the way out! What a legend, he's usually terrified of anything like that happening and stays completely still whilst screaming but he handled it like a champ today. Super proud 🤩. Other bloods from this week looked ok, platelets and white cells/neutrophils higher than they've ever been in his entire life, which is fantastic, Hb was only 105 which is not ideal 😕. In his previous life, Henry would be getting a blood transfusion at 100 because that's when he starts to struggle with day-to-day life, so we're a bit gutted. Hopefully it's all linked up to the drug issue and we just need to be patient and wait for his body to catch up x

Day +242 - Thank you so much for all the love ❤. Back to reality with a thump for us, we've had a pretty worrying week. We've been having issues with Henry's immunosuppressant levels being too high for around a month now. Unfortunately, this has all caught up with his kidneys and they are really struggling. His creatinine (a measure of kidney function) is usually 30 and it's currently 114...so this has all got rather serious rather quickly. We've been instructed to stop giving Henry his immunosuppressant and cut down on some of his other medication, as well as get 2 litres of water in him every day, to try and halt the damage. Poor boy is weeing for England. The alternative was to be admitted to hospital to be hooked up to continuous IV fluids so we feel lucky to have avoided that so far🤞. He can only be off his immunosuppressant for a very short period of time before it causes its own problems, so we really hope having a little rest will be enough to tip the balance back in his favour...if we could just get through one week without having something to worry about, we would be massively grateful 🙏! Another blood test tomorrow to see where we're at, we've got three different hospitals all working on a plan though, so hopefully we're covered! X

A very Merry Christmas to you all! Henry has some news that he's been waiting to share...💜 . He is going to be THE best big brother next June, that's one lucky baby! . Henry's response when we told him - "Oooh it looks like a zombie baby, can I take it trick or treating?!" 😳🙈🎃

Day +236 - Well, lots has been happening here which we'll fill you in on later but we're dedicating this post to the fantastic Christmas Wonderland at St John's Nursery in Clacton on sea. . We visit every year for Christmas and Henry kept asking if we could go, but I had to say no because he's still in isolation after his bone marrow transplant and can't risk him picking up bugs. However...Christmas Wonderland had different ideas! . These lovely people welcomed Henry in half an hour before they opened to the public last week so he could have an exclusive shop, train ride and meet and greet with Father Christmas and his reindeers. They went completely out of their way to make this happen, coming in early to set it all up for him and completely spoiled him. Life is pretty tough when you're four and only leave the house to go to the hospital, so he was absolutely over the moon with this treat and we are always amazed with how kind and generous people are towards Henry. His lovely cousins all the way over in Australia also have an amazing treat lined up for him after Christmas too (we'll keep you posted 😁) so we're hoping to squeeze even more smiles out of him 💙 x

Day +226 - A rough week but a really good day. The bad 👎 - Henry's been off the steroids for two weeks and his gut symptoms have gradually returned. He has horrible diarrhoea and keeps waking up in the night screaming saying that his tummy hurts and asking for calpol. It's so hard, we're not allowed to give him calpol in case it masks a temperature so all we can do is give him a cuddle and tell him it'll get better 😪. He's also stopped eating, so we've had to put him back on the NG milk feeds. The question is, is it the GvHD back again or is it just his gut adjusting to no steroids and trying to repair some of the damage done from the chemo still? His team are hoping it's the latter, so we've decided to just push on as we are for a few weeks and see what happens. It's horrible seeing him in pain but we don't want to have to put him through more scope surgery and GvHD treatment unless it's absolutely necessary. Since coming off the steroids, him immunosuppressant levels have gone crazy again, they're double what they should be right now and his blood results show his kidneys are taking a bit of a battering from it, but hopefully we'll get it all back under control in a few weeks. The good 👍 - Henry's blood results today were amazing! Platelets at 173, Hb at 123, neutrophils 7.7, all completely normal. We know bloods go up and down and we're well used to that, but considering where they've been of late, we're taking today's results as a win and don't care how short-lived they may be! Henry got to see one of his favourite nurses, he got a lovely Christmas gift from the hospital (and one from a lovely friend last night) and has been such a good boy considering how tired and uncomfortable he is. He's been needing magnesium infusions twice per week since his transplant, his magnesium levels came back the highest today they've ever been (as in, actually normal for once) so although he'd already been hooked up to his infusion, he didn't actually need it. This is huge, if we can get him down to only needing one infusion per week, we might be able to go down to only one hospital visit per week 😮🙏 x

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

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