Sunday 22nd August
It’s Alex’s birthday. Alex was our second son and would have been 9 years old today -which means it’s just over six years since he died. I’m guessing most of you know he died of viral pneumonia whilst we were on holiday in Vilamoura in Portugal. Most of the pictures opposite were taken just 3 weeks before he passed away. Josh was 5 years old at the time, the same age Joseph is now, and in our darkest hours it’s difficult not to think about history repeating itself. Over the years people have reassured us that ‘ lightning doesn’t strike twice’ but the truth is that being hit by tragedy doesn’t make you any less susceptible to it happening again. We tend to prepare for the worst but hope for the best – that way almost anything life throws at you can be looked at in a positive light. This morning Joseph and I make a trip to Beckenham crematorium armed with yellow chrysanths (Alex’s favourite colour) and a drawing of Alex as Buzz Lightyear that Joseph coloured in over his Coco-Pops. We tidy up the private garden and Joseph does some serious pruning with a long pair of garden scissors before lighting a candle. On the way back to the car, Joseph comes out with ‘ I think God made me look like Alex so you wouldn’t miss him.’ He says it to comfort me, but it really knocks me back. I explain that whilst they do look alike, Joseph is very much Joseph and that we love him for being himself. The grilling continues as he asks if we’d have had another baby if Alex hadn’t died. It’s impossible to say for sure. All that matters is that not a minute goes by without us thanking our lucky stars that we have Joseph. He’s a true gift from God. He beams with pride when I tell him this, although his smile soon fades when I point out that he could just as easily have been a girl called Josephine. This afternoon he’s with our old neighbours in Petts Wood and will have a fantastic time - football and mini-golf are on the agenda. Up at GOSH, Josh is wide awake and has both eyes open when I walk into the room. The swelling’s gone and it’s wonderful to see those big brown eyes again. Claire had a bad night with Josh but today he’s reasonably calm. After Claire’s gone I ask him to close his eyes if he can hear me and he slowly and very deliberately shuts them a couple of times. If he can hear and understand me, it puts a whole new slant on looking after him and I spend the next hour or so talking non-stop in the hope that he’ll respond again, but it doesn’t happen. Josh’s body is still covered in scratches and bruises, but the skin is rash free which is good news given that his steroid dose went down on Saturday. Josh has developed a weird tremor in both arms since I saw him last and nobody’s quite sure if it’s to do with him having a temperature or neurological. It could even be a reaction to his ciclosporin as we’ve seen him shake with that before, although not quite in the same way. He drifts in and out of sleep for the rest of the day without ever becoming too distressed. Hopefully it’s a good omen as we could do with a change of fortune...
Monday 23rd August
Relatively speaking it was a good night with Josh only waking every couple of hours and settling quickly afterwards. That pretty much set the pattern for the day. The doctors are pleased with his progress, although his temperature’s hovering around 38 degrees even with Paracetamol. I request that his oral morphine is only used when he needs it as he’s not in pain at the moment and the last thing we need is his gut slowing down again. The physiotherapists are equally happy with Josh and sit him up on the end of the bed. Not the kind of reward for good behavior he’d have had in mind, but he didn’t get short of breath or too agitated so it’s definitely a step in the right direction. The only downside of Josh’s progress is that it highlights just how far he’s declined. When he’s asleep it’s fine because nobody does much in their sleep, but when he’s awake, staring into space unable to communicate or send us any signal as to how or what he’s feeling, it’s soul destroying. Both Claire and I struggle to recall what Josh was like before all this happened. It sounds crazy, but I guess it’s a subconscious way of protecting ourselves. The same thing happened after we lost Alex. Even today almost all our memories of him are from videos and photographs rather than from inside our heads – it’s safer that way as there are doors in there you just don’t want to open too often. Writing that has made me remember being in Faro hospital just after Alex’s first fit. We were told he could have brain damage but a few days later when he was in ICU, or whatever the Portugese initials for intensive care are, he called out to me as I gave him one of his two oral medicines - ‘ Don’t like the pink medi. Like the orange one.’ I was overjoyed to hear him speak and thought that somehow meant everything would be fine. An hour later he said ’No more, Daddy’. They proved to be his last words. He was put on a ventilator later that night and died the next morning. No more indeed. A work job with a quick turnaround comes in and it’s a welcome distraction, although I have to type everything out on my Blackberry, which proves a real eye test. Josh had more platelets today and his fortnightly dose of Cidofovir which, in theory, helps him battle the JC virus. I say in theory because there isn’t really much it can do unless his immune system picks up. Before he has this infusion he needs hydrating and by the end of the day his fluid balance is 1000ml positive. This means another diuretic and lots of nappy changing over the course of the evening – the most significant of which is a triple whammy when he starts to wee a second time just as I’m changing him, then comes out with a third wee that covers me, him and the sheets in the five second gap between whipping off one nappy and pulling on another. It never rains but it pours…
Tuesday 24th August
One step forward, two steps back. After yesterday, I’d hoped Josh would have another trouble free day but he’s crying out by 9.30am and never really settles. It starts with stomach cramps, which isn’t surprising as he opened his bowels for the first time in ages during the night, but soon develops into general agitation which is far worse in many ways. The doctors don’t want to see him suffering and suggest putting him back on a morphine background but I’m keen to avoid this if we can. Overall, the plan remains the same with a lumbar puncture planned for tomorrow to check if there’s anything new going on in his brain or, more importantly, if the chicken pox virus has gone which means we can stop one of the drugs that affects his kidney function. The last lumbar puncture was pretty disastrous as they failed to draw out any cerebral fluid in seven attempts and his spine was left looking like a second hand dartboard. I request someone else carries out the procedure – preferably the doctor that managed it first time. One of the CSPs is working on the ward today and pops his head round to say hi. It’s the first time we’ve talked when there hasn’t been an emergency in full flow and we chat for a good half hour about all things medical and many things not. I’m sure Josh only associates him with problems as he sounded even more distressed than usual when he opened his eyes and spotted him in the room. By the time Claire arrives at 2pm, Josh still hasn’t settled and is crying out and shaking. When I catch up with her at the end of the day on the phone, he’s still not good which is real setback. It’s made worse by the Chinese whispers that have spread around the ward that suggest Josh has made a full recovery. A nurse, mistakenly thinking Josh squeezed her finger when asked ( I was watching at the time and, trust me, he hardly moved ) must’ve excitedly told another nurse and the story has been exaggerated slightly every time it’s been passed on. The result is that people come into the room expecting Josh to be sitting up and talking. It’s driving Claire mad and when the neurologists and the pain team both fail to turn up because they heard Josh was better, she threatens to go ballistic. Let’s hope it’s a quieter night at that end. At this end I managed a quick visit to the gym, where the ladies clock is now 80 minutes behind the real world, and Joseph had a wonderful afternoon without us and saw ‘Marmaduke’ at the cinema with a friend. Didn’t Pixie Lott sing the theme tune to that ? Altogether now ‘ What would my Marma duke, oh oh oh oh ’…
Wednesday 25th August
It was a shocking night for Claire. The only time Josh has stopped crying since I left was for 10 minutes when he had his oral hygiene done. This involved a flavoured gel, pink sponge lollipops and one of those instruments they use at the dentist to suck your slobber up with. Josh is back on background morphine again but it’s too early to say if that’s working. It’s hard to believe he’s in pain, which means it’s far more likely to be cerebral irritation again which might explain why it never stops. One of our friends called Claire and heard Josh wailing in the background. I think she was shocked. When you have to put up with it 24 hours a day every day it’s just awful. Nobody seems to be able to clarify anything at GOSH at the moment. I know it’s not their fault, but basically Josh is in here as a direct result of the drugs he’s been on post- transplant and in nearly two months he’s gone from mildly confused to virtually comatose and we’ve learnt nothing new. His lumbar puncture will probably have to be delayed again too now. With nothing else to do last night, other than go mental listening to Josh, Claire googled JC virus again and it appears that there’s a good chance that Josh will need considerable rehabilitation even if he manages to fight the virus off. They can’t do that at GOSH as far as we are aware, so quite how we go about that we’ll just have to worry about when and if. At home, Joseph and I enjoy a quiet morning of reading, colouring and ironing before venturing out between downpours to Beaver World. I’ve mentioned it before in this blog and it’s a real oddity, but for a 5 year old boy who loves reptiles it’s not a bad place to go on a rainy day. It’s only a couple of miles from Biggin Hill but nobody seems to know it’s there. If you’re driving and get lost don’t make the mistake I did the first time of asking a couple of teenage girls in short skirts were it is. At best you’ll get your face slapped, at worst arrested. They have everything there from giant Asian water monitors to alligators, pythons and piranhas. Joseph had a fantastic time and seemed to know more about the snakes than the keepers did. There was an albino Burmese python there which he told me is one of the longest snakes in the world. All I knew was that Britney was photographed in a bikini once with one round her neck. He reads Animal Encyclopedias, I read old copies of Heat I find at the hospital – go figure ! Highlight of the day for him was watching someone feed a small chick to a python which swallowed it whole. At one point just its two feet where sticking out like cocktail sticks. We even had lunch there at the 'Gator Bar Cafe', although strangely enough I wasn’t all that hungry by then. We didn’t see any beavers anywhere though, not even a glimpse of a big flat tail. They’re very shy and like a lie-in apparently. Lucky bloody them. Claire’s evening update is that Josh has settled down again. Presumably the morphine has just sedated him rather than anything’s actually changed or improved. They’ll try and switch him to Ketamine overnight if he wakes up which would be better for his gut. He’s back on oxygen again as the sedation affects his breathing which has become labored again. Let’s pray it doesn’t result in another PICU visit as I’ve only just handed back the keys to our lockers. They’re going to start weaning him off the Risperadol slowly as it might be the cause of his tremors and an opthamologist took a look at him to check whether or not his vision is impaired. It’s highly likely it is but they can’t say for sure. Meanwhile the stem cells from the Netherlands are either in the post or making their way over by carrier pigeon and should be here in the next few days. On that note I’ll say goodbye for now. I’m thinking of only updating the blog once a week with a single entry in future, rather than a day by day account of what’s happening. It looks like we’re going to be in here for a long time to come and I’d hate for you to get as bored reading about our lives as we are living them. Joseph’s back at school next friday so changeovers should be a little easier and Claire and I will both get the chance to do more during the day when we’re at home – although not together, obviously. At Great Ormond Street, who knows what will happen in the next few days. Two months on and we haven’t got a clue as to what lies in store for Josh, and unfortunately neither do any of the doctors…
