Saturday 16th October
Football is back on Joseph’s social calendar although he’s no longer at Bromley FC. Whilst I’d love to tell you he was transferred to another club, smashing the British transfer record in the process, the truth is he’s playing 200 yards up the road at a parish church. This is predominantly because his swimming class namesake goes there on a Saturday and our Joseph decided he wanted to follow suit. They train and play for two hours for £2 and you don’t even have to stay and watch them, making it the cheapest childcare ever in the history of mankind. As it’s his first time, I hung around for the first 30 minutes to make sure he was okay and returned for the last half hour when they played a match. He appeared to be love every second of it, which is more than can be said for the poor striker he attempted to slide tackle in the last few minutes. Luckily the referee was doubling as one of the goalkeepers and missed it, so he wasn’t red carded. Joseph’s keen to come back next week provided Joseph number two is there again, so this could become a regular Saturday morning fixture. Next time I’ll squeeze in a trip to the gym while he’s playing. By the time we’re home, warm and changed, it’s off to London to see Joshie. He’s looking sleepy when we arrive but perks up to such a degree it was just like an old day with them swapping banter and laughing and sniggering at every rude noise or joke they come out with. Josh’s short and long term memory appears to be excellent at the moment with no real holes or gaps and it’s easy to forget just how close we were too losing him just a few short weeks ago. Unfortunately, not all the other children here have been so lucky. At least seven children on the ward during our two stays here have died of complications following a bone marrow transplant. Joseph decides to try his luck at hoisting Josh out of bed again and we take him off down the corridor for a nice hot bath. Nearly too hot as I’m so used to the water being tepid, I don’t bother adding any cold. Luckily Claire is still on hand to do an elbow dip test and crank up the cold water tap. Josh started on solids yesterday, so presumably the BMT team have overruled the Gastro dietician and pressed ahead regardless. A few minutes after eating a few mouthfuls of rice Josh is violently sick, but it’s hard to believe it’s down to his food as he was gagging long before that. He’s asleep shortly after I clean him up and I hardly hear a peep out of him all night.
Sunday 17th October
We’re keeping a close eye on Josh’s fluid intake at the moment as his renal function is looking decidedly dodgy again. This isn’t as easy as it sounds. At Great Ormond Street a day officially starts and finishes at 8am to fit in with shift changes. Josh is currently allowed 800ml of water over 24 hours and when I swapped over with Claire yesterday afternoon he was already on 600ml which meant I had to ration him overnight. Unfortunately, the nurse he affectionately calls ‘mushroom’ looked after him last night and couldn’t resist his big, brown eyed pleas for more water, so I’m unsure how much he had. Fortunately a fluid amnesty is declared at 8am and the whole process kicks off again. Josh recently declared himself ‘a lean, mean drinking machine’. I’m not so sure about the lean, but otherwise he’s right on the money. Apart from waking up thirsty a few times, Josh hardly stirred until well after 11am which gave me a chance to crack on with a couple of briefs I’m currently working on. When he does wake, he’s on terrific form again and we finally get around to watching all the World Cup games he missed back in July. He is delighted to see that his pre-tournament favourites, Spain, lifted the trophy in the end. His memory really is spot on at the moment. He knew which games he’d seen, which he hadn’t and when they showed highlights of the tournament at the end, he could tell me which incidents he’d seen live in the days leading up to his hospitalisation. After all that excitement he needs a nap, which is perfect timing as someone has volunteered to sit with him for an hour while I go out. It’s a beautiful day in the Capital and a stroll over to Covent Garden makes me feel vaguely human again. I say that, but it’s becoming stranger and stranger seeing normal people going about their normal business when we are so far removed from the real world. The truth is we never really know what’s going on in people’s lives and anyone seeing me today would think I didn’t have a care in the world either. Surprisingly, Josh is wide awake when I return and saves a great big pooey surprise just for me. Once he’s cleaned up, I ask him if he wants a bath and get a big yes in reply. I’ve started lowering him in the other way round so his head’s at the tap end which gives him more room to stretch out his legs. The water’s always hotter at the weekend, presumably because there are far less people using it, and at Josh’s insistence I keep letting water out and topping it up again to keep him warm. We have a great time, talking about what happened to him and how amazing he’s been to come back from the brink. He doesn’t want to get out of the bath and keeps sighing with pleasure as I pour hot water over him. ‘ I want to live in here,’ he tells me. Eat in here, drink in here, sleep in here, poo in here…’ I point out how impractical that last one is, but I get the message and it’s a good 50 minutes before I have to haul him out. The world record for time spent in a bath is apparently 3hrs 14 minutes, which doesn’t seem that long to me, especially when the record for time spent in a bath full of baked beans is 100 hours. Once I’ve hoisted him out and back into bed, Josh decides he wants to go to the playroom which is a great idea and we’re off like a shot in his wheelchair. He’s somehow worked out how to play doubles in Mario Golf and he’s improved so much in terms of his dexterity over the last 7 days that I’m struggling to keep up. I can’t even work out the score to be honest. He’s under par, which is apparently good in golf and yet ‘feeling under par’ means you’re not well. I’m confused. Either way, this is the longest he’s been out of his room since he arrived in early July and, even though he’s exhausted when his head hits the pillow, he somehow finds the time and energy to propose to his favourite nurse. His potassium levels are a little high again and he needs bloods retaken to check the levels. He’ll also need a finger prick about 6am to check his ciclosporin levels – let’s hope it doesn’t look like he’s flipping the nurse a finger this time, although I could hardly blame him if he did it intentionally. It’s been a perfect day. Just when I think it couldn’t get any better, I curl up to watch Match of the Day and see my Everton team stuff their local rivals Liverpool 2-0. With the echo of the crowd singing ‘ Going down, going down,’ still ringing in my ears I drift off into a nice deep sleep.
Monday 18th October
Another quiet night for Josh, apart from a 4am blip when he thinks he’s soiled but hasn’t, then unleashes a torrent of diarrohea the moment I’ve got his pull-ups off to examine him. I avoid getting splattered but the sheets don’t fare quite so well. Today’s plan is to take Josh to the gym for 10.15am and then leg it to Tottenham Court Road to be briefed on a new project from a new client. Josh is so keen to get out of bed this morning that I have to hoist him into his chair and take him down to the playroom 30 minutes before his physio session for a quick round of Mario. Does Nintendo Golf count as exercise ? Probably not, as I’m not even sure proper golf does. After that it’s all systems go - pushing him along the corridor with his machines in tow, down in a lift, along another corridor and up in another lift to the Frontage Building which is presumably so named as it’s at the front of the building, but by then I’ve completely lost my bearings. No time to see him put through his paces as I’m off down the road, or is it up the road ? Told you I’d lost my bearings. Once the briefing’s over I head back to GOSH to pick up Claire’s travelcard to get me home. Josh’s room is empty and the card’s not on the side where Claire said she’d leave it so I have to track them down. Luckily, it’s elementary my dear Holmes. I just head for the playroom where guess what ? Josh is playing Mario Golf again with his cousin and Claire. He’s upset to see me as we’d said our goodbyes earlier and he begs me to stay and play a 4 player golf game. I can understand why he needs a new challenge as Claire is currently 28 shots over par and they’ve only done 5 holes, but I have to go. With a heavy heart I watch his face drop and it’s not until I’m on the train that I can get the image out of my mind. The rest of the day is far too dull to write about as I work until 6pm and then pick up Joseph. He’s been with Josh’s best friend, Nick, again and Joseph says he’s his best big friend he has that isn’t in our family. Praise indeed. Football in the kitchen follows and after a quick story from his cousin he’s zonked. Claire calls with a quick debrief on Josh but there’s nothing new of any note. Bed beckons me around midnight. My mind’s still active but my back’s too weak to think vertically and I desperately a night on mattress that hasn’t been carved out of granite.
Tuesday 19th October
All work and no play makes Jack a dull boy. Luckily I was never that interesting anyway, which is just as well as it’s all I do today until 3pm when I pick Joseph up. He watches TV for half an hour while I send everything I’ve done over the last 2 days off to the agency. The plan was for me to cook before swimming today, but by the time I’ve chopped and diced it doesn’t leave much cooking or eating time, and as neither of us are particularly hungry, we decide to wait. It’s pouring with rain when we leave and water is starting to trickle out of Claire’s butt. New readers may be a little shocked to hear this news, but I would suggest you read a few older blog posts before reporting me to the authorities and closed down the blog. It’s all good clean fun, honestly. While I’m watching Joseph’s somewhat unorthodox version of the front crawl and wondering how on earth he can breathe between strokes, I get an email from work to say everythings gone down very well. This comes as a relief, but means I need to do another couple of hours tonight to tidy things up. We finally eat after Joseph’s playtime in the pool is cut short when he’s caught short and has to make a sprint for the loo. It’s gone 8pm before we both settle down to read a Halloween bedtime story. Tonight it’s Icabod Crane and the Legend of Sleepy Hollow, but a Disney version that hopefully won’t give him nightmares about headless horsemen. Claire calls me on the landline just as he’s nodding off. She’s given up on my mobile as I never get a good enough signal at home anymore. Our landline bill’s gone up £45 since I upgraded my Blackberry which is now left with hundreds of unclaimed minutes on my tariff. If I ever get the time, I’ll have to have a quiet word with someone at the Carphone Warehouse. It’ll probably be two words actually, and both quite short. Josh has had another great day. He didn’t want to get up this morning as he’d had such a bad night. There was nothing wrong with him, but the nurse was new and she kept waking him every 5 minutes to ask if he needed a wee. He was not a happy bunny as he’s perfectly capable of letting us know when one’s coming and he likes his beauty sleep. Claire tried to wake him at 9,30 as the speech therapist was due, but 30 minutes later when she did finally grace us with her presence, Josh was still in la-la land. According to Claire, ‘ She looked very miffed, but then again she always looks miffed.’ She did a number of tests to see how his brain recognition and hearing are doing and found the first was fine but the latter wasn’t. Physio arrived soon after the miffed one left and Josh tried to stand up on his own, which is admirable but not a great idea as his legs would collapse under him. He did well again though, sliding on and off the bed down what is called a ‘banana slide’ and then finally coming to rest in his wheelchair. Mario Golf followed (Claire’s improving gradually, apparently…) then, after a dessert sized spoonful of rice and chicken and a long session of Angry Birds on his teacher’s iPad, his favourite cousin arrived. Hopefully this last comment won’t alienate his other cousins, all of which he obviously adores, but she’s the one he sees most and has spent the most time with over the last few years. He manages even more Nintendo action with her, but eventually his bottom becomes sore from sitting in the chair and he goes back to the room. A bath follows, although Claire had to hoist him straight back out to empty the tub then refill it again due to what we’ll politely call ‘ unforeseen circumstances’. Josh then has a short session with his psychologist which appeared to go well too. So all in all an excellent day from his point of view, although he did nearly cry when he heard Rooney could be leaving Man Utd at some point this season. There’s nothing wrong with that as I was in floods when he left Everton. Mind you, he was our only decent player…
