Today is Hugo’s third liverversary!!!
I can’t quite believe it’s actually been three years since the transplant. Every moment of that day is still etched in my mind like it was yesterday; looking back it honestly feels as though time has simultaneously flown by and stood still. I’m not sure that feeling will ever really leave me. I’m still so tremendously thankful that Ross was able to do what he did, to give Hugo the greatest gift he’ll ever receive (although I reckon if you asked Hugo, he’d insist that the best gift he’s had is actually his flying Blaze toy!), and that Hugo was given the chance to lead the wonderful life he does. And I’m so grateful for the incredible NHS teams that have looked after him since he was eight weeks old, and got him to where he is today. He’s reached the point where if you didn’t know about it, you would never be able to guess what he has been through in his life; even his scar, the only physical clue, is hardly noticeable now. It all totally blows my mind, and there will never really be enough words to convey properly how it makes us all feel. It’s safe to say, we’re so lucky for the last three years of happy memories, and so proud of how incredibly brave and stoic our boy is.
Generally, life has been incredibly normal for us as a family since I last found the time to sit down and write. Hugo is learning and developing as a three year old should. He is bright, funny, confident, creative and so gloriously loving, and he is equally strong willed, assertive and can be bloody difficult when he wants to be. Medically, things have mostly been on a very even keel; his last clinic at King’s in January went perfectly, and his routine bloods have been consistently great. We’ve even been able to stretch them out from every six weeks to every eight weeks, which is a great step in the right direction for him. The fact he’s been doing so well from pretty much every angle has allowed us to relax enough to let him experience some of the things I’ve always felt too nervous to let him try before – namely, soft play. When we were on holiday in April we finally took the plunge (and some very deep breaths) and let him loose in the soft play. Of course, he LOVED it, and by the end of his third day of pretty much living in there, even I was able to relax while he was wearing himself out playing to his heart’s content. And when we packed up and headed home, I felt happy that we’d finally done the soft play thing, and that actually, nothing bad had come of it.
Or so I thought.
We’ve always known that life isn’t necessarily going to be plain sailing for Hugo. Even with how well he is doing medically, he is still potentially vulnerable to a lot more than other children of his age. It’s the main reason we’ve taken baby steps over the last three years to normalise his life, and why I’ve always avoided soft play centres – to me, they’re just germ factories, to be avoided. One illness that is a major red flag for post transplant patients, and an almost inevitable nightmare for us as parents, is chicken pox. Post liver transplant, chicken pox can be very dangerous; the virus itself can attack the liver, cause rejection, and lead to secondary complications such as pneumonia, bacterial infections, and so on. There are standard protocols from King’s of how to deal with either potential exposure or actually catching it, both of which require hospital trips and, in the case of catching it, an admission for IV treatment. In our minds, it’s up there with one of the worst childhood illnesses he could be exposed to.
So when I got Hugo out of bed a couple of weeks ago to find him covered in blister-like spots, my stomach all but fell through the floor. I wracked my brain to try and figure out where he’d picked it up, but pretty much everyone that we’re close enough to spend time with knows how risky chicken pox is, and they tell us if there’s even chance he’s been exposed. Based on the timing of when he came out in the spots and the incubation period, there’s only really one place he could have caught it: soft play. Of course. Urgh.
I packed a bag, knowing that this meant an admission and a very full on and probably very difficult week. There was just no doubt about it. But somehow, Hugo managed to dodge being admitted overnight. He was so well in himself (he actually found having chicken pox utterly hilarious), they didn’t think he needed the treatment and monitoring that we had been so certain he would have, so we were sent home with a prescription for oral acyclovir to start the following day if he worsened. He remained so well (leaving to one side the nasty tummy bug we also had that week) that apart from a second hospital visit for bloods, he rode it out at home on the oral meds. Of course, we were relieved that we weren’t staying in hospital (for one thing, I realised very quickly that having to keep an active, curious and playful three year old occupied while in hospital isolation was a LOT harder than it was when he was an immobile baby!), but I have to say there’s a little part of me that I think would have found it easier to cope if the treatment had been by the book.
After Hugo’s transplant, as part of our education in how to manage his health we were given a little yellow book which outlines various rules and protocols we need to follow if and when he becomes ill. But Hugo has, so far (and always, always, touching wood), seemed to go against the protocols. In fact, his only admissions post transplant were when he was being tested for PTLD at King’s in late 2015/early 2016. Every other time he has had a temperature or shown signs of becoming unwell, we’ve been advised to take him to the GP and manage his symptoms at home. Don’t get me wrong – the fact that he is allowed to fight so much on his own is amazing, but it also puts me a bit on edge, as I don’t really understand why it is different for him. I know that part of it will be down to the fact that he is on such minimal medication, and also possibly because he has now developed a bit of a track record for not needing admissions, but we just don’t really know. There’s a niggling part of me that worries that he’s almost been too lucky, and questions whether he can carry on being so well indefinitely; I’m frightened that he’s going to use up his luck one day. I actually asked the consultant at his clinic last summer this exact question about chicken pox – whether he would be allowed to fight it if he caught it, given how well he seemed to be doing. The answer was a firm ‘no’, as the risks are still considered too high. So the fact that when he did actually come out in chicken pox, he was allowed to fight it – and he fought it so well – has both confused and amazed me. He is due another set of bloods this week to make sure his liver functions have all returned to normal (one has become a bit high with him being so poorly, so we have to keep a close eye to make sure it’s nothing sinister), and after that we can hopefully draw a line under chicken pox for good. Fingers crossed.
Even though Hugo has coped typically well with being poorly, I don’t think I’ve struggled as much mentally or emotionally since the early post-transplant days as I have done in the last few weeks. I know we are incredibly lucky that this side of his life is so rare, and I am very, very grateful that his life since transplant has involved much less medical intervention than we imagined would be possible at this stage. I’ve taught myself to try and not feel too sorry for him, or for us, not to wonder ‘why him’, because I know it achieves nothing. Every time he has bloods it breaks me a little, but I always try and keep it together (in front of him, anyway) because I have to; I’m his mum. I have to be strong for him. But it’s not always easy. And during these last few weeks, it’s been really hard for me to wrap my head around everything.
I know it’s ok to feel like this at times, to struggle and feel totally overwhelmed by how totally bloody unfair it is that Hugo’s life isn’t as straightforward and free of pain as it should be. But I also know I can’t let the moments when I do feel like this take over. Now he’s feeling better I’m picking myself back up, and I’ll keep on keeping on like I know I can. And today, his liver birthday, just reminds me that even though at times life can be totally shit and unfair, my superhero boys have filled it with so much light, love, laughter and happiness that I know everything will be alright. We are just so lucky to have our Hugo, and even during the darkest hours I will never stop being thankful for him, and for his daddy.
As for soft play… well I’m hoping that when this has all settled down again, I can hold my nerves and let him go again. I don’t want his life to be restricted by his transplant (or my fear or what might happen). As hard as it might be for us to know that certain things might put him at some kind of risk, life is for living; reaching amazing milestones like today is a big reminder of that.