Thursday 29th September
‘I don’t like Dung Beetles much, do you Dad ?’ Ah yes, it’s the question every father is no doubt asked at the school gates at 8.40am. To be honest I’ve never really thought about them much, which is what I tell Joseph. ‘ I suppose they’re quite useful though because we’d have to clean up loads more poos if they didn’t eat them ’ he continues. It’s a fair point well made, but sometimes I really do wonder what planet he’s on. As he toddles off into school I’m left to ponder the devastating news about Josh’s hearing and quite what we do next. As if that wasn’t enough, Claire had a torrid time yesterday and had to have a word with some of the nurses. We do so much for Josh and never really ask much of anyone, but yesterday when he was vomiting and pooing everywhere and she needed help changing him, did anyone come ? Nope. They were all either training each other, at lunch or just too darned busy nattering to walk two yards to find out why the buzzer was buzzing. With everything that goes on in the workplace these days, there’s a real danger of staff forgetting what they’re actually there for - to look after sick children. Claire gave them a timely reminder and good for her. She also told one of the doctors that she wished we’d never done this and I know exactly how she feels. It wasn’t just for health reasons that a BMT was suggested, it was to improve the quality of Josh’s life. And yet here we are almost a year after transplant and his quality of life is so none existent that all he has to look forward to are nappy changes and sips of cold water – fluid balance permitting. Claire also quite rightly took exception to the suggestion that Josh’s rehabilitation should take place at our local hospital. After all he’s been through and will continue to go through, most of which is a direct result of drugs and side effects rather than illness, the least they can do is make sure he’s given the best possible care to enable him to fulfill his potential. He’s currently 3 years behind at school and socially too, having spent so much of that time in isolation. And now with hearing issues on top of all that, the next few years and how well he recovers will have a huge bearing on the rest of his life. Claire is magnificent, as always, and will make sure we fight every inch of the way to get him the treatment he deserves. I set off for the hospital straight from school, planning to arrive early enough for Claire to have a long soak in the bath at home before picking up Joseph. The room’s empty as Josh is having an ultrasound done on his heart which we later find out looks marginally better. When he returns I’m staggered by how well he looks. He’s proudly wearing his new Man Utd top and has lost weight off his face, his eyes are focused again and, whilst he struggles to hear much of what we say, he’s right back on form with all his wit and charm intact. He’s delighted to see that I managed to track down the new Match Attax cards and binder which only came out today. We open a few packs together and he’s excited for the first time since I don’t know when. He’s able to express himself far better than at any point in the last 3 months and it’s not what I expected at all after yesterday’s update. Soon after Claire departs, the physios arrive and have Josh sitting up on the bed in no time. He manages to stand for a few minutes with their help but it soon becomes painful and he has to settle for throwing and catching a ball instead, which he does with some panache. It’s 30 minutes until his teacher arrives and I try and keep him awake by talking football and Playstation and, for once, it’s not one way traffic and he’s both a willing and articulate conversationalist. He’s been hallucinating a little lately, seeing his friend Ronan in the lift and by his bed but the only sign of that I see is when he tells me the nurses are sorting out their Match Attax cards outside our room. I’m guessing he was mistaken, but it might explain why nobody came to help Claire yesterday. No such worries today as we have yet another dream team combination of nurses on duty who are everything you could ask for and more. Just as I pop out for a client meeting, Josh has terrible diarrohea and I have to leave them to take care of it, which they do. In fact, when I return some two and a half hours of talking nonsense later, he hardly seems to have missed me at all he’s been so well looked after. It’s such a joy to see him smiling again. I could write about him all night and tell you the things he did and said that melted my heart, but it’s getting dark and he’s just settling down to sleep. You can only ever live your life one day at a time here in hospital, but as days go, today was an absolute cracker…
Friday 1st October
It was like sleeping in one of Sainsbury’s chiller cabinets last night. I had 3 blankets on the bed and was still freezing. Claire had warmed me and I even kept my socks on in bed – even though I’m told it’s a fashion faux pas. Josh didn’t seem to feel it. At one point he even asked for the fan to go on ! He only vomited once in the night but I had to change him 3 or 4 times as there were no dung beetles around to clean up for me. As you’ll have gathered from the last entry, yesterday was a good day and a tough act to follow. This morning saw Josh continue in the same vein as far as his understanding and communication was concerned but he was extremely tired and hardly stirred except for a quick physio session. The ward round brought nothing new and no changes. I turned Josh’s oxygen off last night as it was only really oxygenating his pillow at one point and he’s done really well without it which is excellent news and greeted as such by the team. When we start talking about rehabilitation, I refer back to the problems we experienced liaising with GOSH when we were last in our local and how, ultimately, that misunderstanding resulted in Josh’s encephalitis. Nobody argues and hopefully now the point’s been made we can remain here until Josh is well enough to move straight to a rehab centre. The Priory would be nice. Josh and Amy Winehouse say ‘ yes, yes, yes !’ While Josh’s teacher lets him play games on her brand spanking new iPAD, I have a meeting with audiology to discuss Josh’s hearing. The consultant is 40 minutes late because she didn’t realise the meeting was at 1.30pm even though someone had told her ‘it just didn’t sink in.’ At least she’s honest. They will do more tests in the next couple of weeks and will give him hearing aids in the meantime. She starts to tell me how wonderful modern digital aids are but thankfully stops when I point out that I’m wearing one and they’re far from perfect. She avoids using the words ‘permanent hearing loss’ which her colleague bandied around so readily in front of Claire so we shall just have to wait and see what the future has in store. If the encephalitis is playing some part in the deterioration, it could improve a little over time. Back on the ward Josh is on top form. He giggles and smiles as we watch old videos of himself and Joseph – including his classic Jedward version of ‘Boom, Boom, Pow.’ For some bizarre reason nobody can quite fathom, we have to drag Josh down to Ultrasound in his bed at a moment’s notice just before 5pm. It’s yet to be explained but I suspect it’s nothing to worry about – just one of those ‘it’s Friday and nothing happens at the weekend, so…’ knee jerk reactions. The hot water’s back on again and we parade Josh naked down the corridor in his hoist for a bath. He’s grinning away and by the time we reach the bathroom there are at least 6 nurses swarming around him, vying for attention. He turns to one he hasn’t seen for some time and says ‘ I’ve really missed you.’ This only makes them all clamour for him even more. Not since the decadent days of the mighty Roman Empire and Caligula has any mere mortal enjoyed so much female attention at bathtime. All we’re missing is a tub full of ass’s milk, so we have to make do with Oilatum instead. Two minutes after the Emperor’s triumphant return to his nice clean bed, he’s brought crashing back down to earth as vomit and diarrohea erupt from his orifices. Luckily he felt it coming and warned us so we could minimise the mess. Dung beetles, where are you ? After having his Hickman line unblocked again and drunk a small reservoir of boiled, cooled water he’s ready to sleep. I help him onto his side out of habit ( he can do it all on his own now) and kiss him goodnight. Without wishing to sound like a Barclaycard ad, it’s been yet another priceless day.
Saturday 2nd October
It’s early morning in London and the Autumnal sun casts long dark shadows across its streets and parks. It’s a beautiful day in the Capital in every way and while Josh sleeps, I take a five minute stroll to the nearest newsagents for a daily paper. The hospital shop doesn’t open until 10.30am at the weekend and I was up and about just after 7am. Watching London slowly waking up is like having a long, comfortable stretch after a good night’s sleep and it makes me feel warm, cosy and alive. Josh had another excellent night. I was up and down a dozen times or so, but even dragging myself out of bed to see what he wanted was a pleasure and made me smile. It’s hard to explain, but after all the dark places we’ve been over the years, and the last few months in particular, hearing his voice so politely articulating what the matter is and what he needs you to do is really comforting. He wakes for a few minutes on my return and I just about manage to scrape the dry skin off his cracked lips and rub olive oil into his flaky face before he drifts off again looking snug and content. Work kept me awake for much of the night. It shouldn’t as I’m certainly not being paid enough on this one to lose sleep over it, but they’re nice clients, it’s a worthy charity and I want to make a difference. I carry on thinking as I lie on the bed with the sun streaming through the window and soon start drifting off myself. One of the play therapists arrives around 11am to ask if I want a break for half an hour. I’m not sure what from, but say yes anyway and sit in the sun in Russell Square sipping a hot chocolate and watching the world going by, seemingly without a care in the world. Whilst we have so much to worry about and so many more battles to fight over the coming months and years, right now Josh is enjoying his best spell for nearly 3 months and I’m happy to savour every moment of it. He wakes and sleeps and wees and sleeps and wakes and poos and sleeps again on my return and this pattern continues until Claire calls to tell me she’s on her way over with Joseph. I wake him up gently and we start sorting his new Match Attax cards to keep him awake. As we start sliding them into his book , I notice him becoming confused again. Nothing too serious, but he gets players names wrong and imagines he has cards that he doesn’t. Soon after that he’s pointing out of the window at the scaffolding on the building opposite and saying how much Joseph will like it because it’s The Jungle Book. He can see Mowgli and Bagheera and Baloo out there in his mind’s eye. There’s no Victoria line running again this weekend and Claire and Joseph take over an hour to cross town on a bus. It’s fantastic to see the two boys together and be reunited as a family for the first time in nearly 3 months. Joseph climbs into bed next to Josh and starts showing him all his Deadly 60 cards. Josh is still off his oxygen and once his infusions are finished, we hoist him up off the bed and into his wheelchair. Joseph is fascinated and insists on pushing his brother down the corridor to the playroom, which he just about manages to do without flattening any nurse’s toes and being sued. Before they’d arrived I’d been round both playrooms looking for games they might like to do or play together that are still intact and playable. There aren’t any really, so the boys play on the X-Box. Joseph always knows the right thing to say and encourages his brother all the time, but Josh is struggling to work out what to do and before long opts to watch rather than play. He tires quickly and we take him back to his room. Joseph operates the hoist and does a fine job of lowering Josh onto his nice clean bed without crushing him. As soon as his head hits the pillow, his thumb goes in and he’s almost asleep before Joseph’s even got his coat on. We say an emotional goodbye and weave our way through the weekend shoppers to Charing Cross station. A Happy Meal on a packed train saves us enough time to play before Joseph goes to bed. It’s been a strange few days. The euphoria of seeing Josh improving so much neurologically has been counterbalanced by the news of his hearing loss. Seeing him and Joseph together only accentuates just how far Josh has deteriorated over the last 12 months. We talk up how well Josh is doing to a certain degree, not just for other people but for ourselves. It’s a miracle he’s able to talk and move and even read. In many ways it’s so much more than we dared to hope for, but we live in a bubble here at Great Ormond Street and the idea of Josh being back in the real world is a frightening prospect on so many levels. Life will become far tougher when Josh leaves hospital and we’re forced to think about the future rather than just living day to day. Joseph is fiercely protective of his brother and has taken up the big brother mantle which will stand them both in good stead. It’s wonderful to see and we couldn’t be prouder of our two magnificent boys. Hope never dies.
