Sunday 30th January
Those of you paying attention may have noticed there was no update on Josh yesterday. This was partly because I was nodding off when I wrote the blog, but mostly because there was nothing to say other than Josh slept for most of the day. Whether this means he’s tired, bored or ill remains to be seen. Work was a real struggle last night as I drifted in and out of sleep typing on my laptop. I fare much better in the morning while Joseph watches TV. We nip to Tesco as soon as it opens to buy a salmon fillet that I poach for Josh before setting off for GOSH. Josh’s big news is that all his exotic virtual fish have gone belly up. I generally feed and clean them when he forgets, but as I’ve been away and he’s been asleep most of the weekend they’ve been a bit neglected. Sure enough, when I go online they’re grey and floating at the top of the tank. Not a good sign. He’s quite upset as he’s nurtured them for almost a month. In desperation, I tap a few buttons and am told I can revive them for one fish buck which we happen to have from downloading another free game. Within seconds they’re back to life and splashing around merrily again. If that hadn’t worked I’d have had to ask one of the nurses to call a vet. Josh and Joseph are fantastic together today. It must be difficult for Josh to see how much Joseph’s grown up in the 7 months they’ve been apart and he’s constantly surprised by how smart he is and what he can do. They play James Bond on Playstation 2 for over an hour and have a great time. Claire and I just lie on the bed in each other’s arms watching them interact and it almost feels like we’re a proper family again. There’s nothing like a good old fashioned Sunday afternoon shooting up bad guys with a bazooka to bring a family together. We’re still a long way off living a normal life though – something that really sinks in when I eat Sunday lunch on my own in the canteen after Claire and Joseph had been down there. I ate something that looked and tasted vaguely like roast beef and Yorkshire pudding but was so chewy it could have been made by Dunlop. Once Claire and Joseph have toddled off home, I give Josh a bath. He’s particularly adept at getting in now, although his neck is giving him grief. When I feel it, it’s as if his Hickman line tube is too close to the surface of his skin and you can not only see the shape but feel it too. A doctor I’ve never seen before checks it out and tells me it’s fine. He’s quite an eccentric character and rather annoying - imagine Geppetto in Disney’s Pinocchio brought to life and you’d be close to the mark. He’s totally out of order when he tells me it can’t possibly be hurting Josh because it clearly is, and I must remember to get a second opinion tomorrow. Josh is doing so well at the moment but I just can’t stop asking myself ‘ When is it going to go wrong again ?’ I’m no pessimist, but with all the setbacks we’ve had, I’m no optimist either. Is there a term for people like me other than miserable old sod ? Answers on a postcard, please. Josh wants to stay in his wheelchair after his bath and watch something which, for reasons far too complicated to explain here, means I can’t. I put on a DVD I recorded for him yesterday which features 3 episodes of his favourite programme at the moment – ‘Pair of Kings’ on Disney XD. I haven’t heard him giggle like that for years and it’s a miracle he doesn’t wet himself. What it’s about, I have absolutely no idea, but if laughter truly is the best medicine then he should be out of here in no time.
Monday 31st January
It’s transfer deadline day in the footballing world and while Josh has a physio session, I nip across the road with his iPad and hang around outside a cafe with free internet access so I can download today’s paper for him. It’s hidden in my bag and I feel like some kind of spy as I pace up and down outside waiting for the bar to fill up on the screen. I’m not being tight, as I could probably afford a hot chocolate, but I’m pushed for time and would have to rush it if I ventured in. On the way back I get a call from the head of Everton’s football academy who is up in London on Monday and wants to know if he can pop in and see Josh. We’d tried to organise something before Christmas that didn’t come off, but he’s got a shirt for Josh signed by all the first team players. It’s the very girly, bright pink away shirt but I’m sure Josh will be chuffed - pink was his favourite colour when he was six. After Josh and I catch up on the latest gossip and speculation, we enjoy a few games of James Bond before his teacher arrives. Josh asks for his glasses as he doesn’t want to get shot. Not much chance of that as he promptly outmanoeuvres me on every mission. The Sick Children’s Trust house we normally have keys for is locked and there’s nobody there, so I can’t cook for Josh at lunchtime. The afternoon is going along nicely until ophthalmology make an unscheduled appearance at 2pm. Apparently they rang ahead and asked a nurse to tell me to put drops in to dilate his pupils, but I got no message. I have to put the stronger ones in because they want to come back in 15 minutes and Josh is understandably upset. The haemorrhages have disappeared as far as they can tell. After that he has a scan, but I can’t even remember what it was for now as he has so many. In the evening we watch Wall-e for the first time. We both enjoy it but it’s yet another animated movie where one of the main characters loses its right eye and just pops another one straight in. Maybe one day medical science will catch up...
Tuesday 1st February
As soon as Josh’s physio session starts I’m out of the door like a shot and head for Tuttis. I’ve got around 20 minutes to email work off and download a large file. Unfortunately I’m in too much of a hurry, trip over my own feet crossing the road and do a Westlife – flying without wings. I land on the pavement with such force that every customer in the cafe stands up as one and gasps. Luckily I manage to break my fall with my hands, knees and head rather than land on Josh’s iPad or my laptop. Aware of their horrified gaze, I pick myself up immediately and pretend I’m unhurt. Too embarassed to walk straight in, especially after loitering outside hacking into their server yesterday, I pretend I was heading somewhere else and slip in unnoticed 5 minutes later. I order a hot chocolate big enough to have a bath in – which isn’t a bad idea, as it would probably soothe my aching limbs. The rest of the day is uneventful by comparison, although it was quite exciting hearing one of the doctors being told off for taking Josh’s notes off the ward. I managed to pick up the keys to the flat so I can cook and Josh manages a few mouthfuls of salmon, which is encouraging. We have an audiology appointment at 3pm that seems to go on forever and ends up with the consultant telling us that he may benefit more from Coclear implants than hearing aids which comes as a bit of a shock. I’m not sure if this is good or bad news, but it’s a complicated procedure and unlikely to happen for many months as he’s not stable enough for surgery. I’ll need to Wikipedia it as soon as possible. Back on the ward we’re still waiting for confirmation of when we’re moving to Tadworth. It’s all gone a little quiet at their end which is worrying. Claire comes up around 4ish and I head off to catch a train. Unfamiliar with the rush hour timetable, I jump on the first Sevenoaks train not realising it doesn’t stop at Bickley until I sail past the station. Getting off at Swanley I have to head back to Bromley South then catch the next train south. I’m just about on time to pick Joseph up from his friend’s house. Once Joseph’s asleep, I take a quick glance at tomorrow’s presentation and realise there’s a lot more work to be done than I’d first thought. It’s almost 5am before I’m done the house is freezing. I resist the temptation to cuddle up to Joseph even though he’s chucking out heat like a super nova.
Wednesday 2nd February
Not sure if I actually slept, but Joseph gives me a lie-in and in the end, I have to wake him up. He’s at a friend’s house today as I’m up in Bedfordshire for a big meeting. All through breakfast he’s telling me how excited he is as his friend has a new puppy and he can’t wait to play with it. At the school gates he runs over to one of the boys and they take animatedly about the dog while I strike up a conversation with his mum. As they walk into class and I thank her for looking after him tonight, her face drops. This is hardly surprising as she has no idea what I’m talking about. It’s only after a phone call to Claire that I learn that, for once, Joseph’s got it wrong and he’s at a completely different friend’s house today, which is poochless as far as we know. Back home I put the finishing touches to the presentation before a last minute dash for my train. I just about remember to change out of the clothes I slept in. And so, it’s off to Kings Cross then onto another train to Cambridgeshire. I still get excited sitting on trains with tray that open out from the seat back in front. I guess it’s because it reminds me of planes rather than trains – not that we’ve been on one together since Alex died in Portugal. He would have been 10 years old this year had he pulled through, which is almost impossible to believe and yet here we are. Having arrived at sunny Royston on time, it’s a 40 minute car journey before we arrive at our destination which is a nature reserve in the middle of nowhere. The meeting goes too well if anything and it’s gone 4pm before we finish. Delays on both trains mean it’s nearly 7pm before I’m back home, by which time it’s straight out again to pick Joseph up. He’s proudly displaying another head injury sticker on his jumper but appears fine. Josh had a good day and went into work frenzy mode– completing page after page of basic maths, english and spelling. He and Claire are having an early night and I set out to do the same – although it’s nearly 1am before I manage it.
Thurday 3rd February
After a brief flurry of activity sending work off, I head into London and arrive just after midday. Josh is awake and singing with his headphones on, so Claire and I have a chance to catch up – even though we have to shout over the racket to hear each other. He has an MRI scan of his pancreas lined up today and has already had a cannula put in. He hates having them (who wouldn’t ?) and it took several attempts for them to find a suitable vein. He complains of shooting pains when we go down after lunch but nobody takes much notice as it’s highly unlikely his vein would collapse that quickly. The machine sounds like a pneumatic road drill on steroids, so Josh needs to wear headphones throughout the session and so do I. It takes about an hour. Lying on his back inside what looks like a giant polo mint, he can watch TV through a series of mirrors over his head, even though the picture is upside down for me. I start reading Rooney’s autobiography to pass the time and learn that Wayne listens to Oliver before big matches and sings along to all the songs, just like Josh. The last time Josh was in her, the mirrors where positioned wrongly and he could only hear and not see the movie. Today it’s the opposite as they forget to turn the sound on and it’s only when he slides out to have a dye put down his line that he lets me know. The dye was originally meant to go down his cannula but, as usual. he was right, and his vein had collapsed. They put it down his Hickman line instead, even though they’d previously said they couldn’t as it might block it. Go figure. He has a quick bath straight afterwards then tucks into his dinner which is Southern fried chicken, although he thinks it’s called ‘seven’ fried chicken and keeps asking me why they fry it 7 times. He watches ‘The Simpsons Movie’ after that followed by the midweek football before going to sleep. The only hiccup of the evening was when I was told he was starting elemental feed overnight, which makes no sense whatsoever as he’s currently vomiting every morning - even with an anti-sickness drug. I overrule the decision as nobody’s quite sure where the order has come from, although I suspect it will be the gastro nutritionalists who’ve requested it without reading his notes or even consulting us. Madness.
Friday 4th February
The day starts with disappointing news. Tadworth have contacted GOSH to say that they can’t make Monday’s meeting and experiencing some kind of staffing crisis. The upshot of this is we won’t be transferred next week or even the week after that. It will be after half-term at the earliest which means we won’t spend the holiday together all under one roof. We may be able to arrange the BMT flat here, but it’s not the same. The only plus side is that, in theory, the longer Josh is here and stable the less likelihood there is of him coming straight back once he’s left. There’s no physio until the afternoon but i still want Josh up before midday. He had another vomit early this morning, despite his anti-sickness drug, and is still feeling a bit out of sorts. Once he’s up he’s fine though and we play a couple of board games and read. Lunch looks far less appetising than yesterday and I can’t blame him for not eating anything. One of the volunteers says she’ll look after him for an hour before his teacher comes, but turns up 50 minutes late. The mother she was sitting in for decided not to come back for two hours, which isn’t exactly fair. On the way to lunch I spot the doctors and we have a full-scale corridor meeting. Basically we’re still waiting for the results of his pancreas scan and they’ll discuss next steps with gastro once they’ve seen those. They’re also looking to take another bone marrow aspirate to see if his immune system is destroying his platelets, which would explain why they keep dropping. If so, they can separate the stem cells he needs from the donors bone marrow and give him a top up. Josh’s physio session takes place at 3.30pm after he’s had a good afternoon, but he struggles towards the end with a headache and back pains. A few minutes after eating he’s violently sick and wants to go to sleep. I’m sitting writing this in almost complete darkness as he wanted all the lights off even though it’s not 6pm yet. I think I’ll have an early one too and catch up on my sleep...
Saturday 5th February
With the Chilean miners now international celebrities ( shame nobody thought to rescue them from giving out gongs at the British Television Awards last week ), there’s a new group out to challenge Josh’s time in incarceration. Six Russian researchers have been holed up in a fake, windowless space capsule for 267 days - as opposed to Joshie’s 213. They are simulating a trip to Mars and are due to ‘land’ on the Red Planet on February 12 and spend two days researching it before they begin the long ‘return flight’ to Earth. They are living in a space the size of a bus and are being monitored to see how they cope with the confinement and stress of space travel. Lucky them, I say, as they’ve got a gym and internet access which is more than Josh and I get. For the record, last night’s early doors didn’t quite go to plan as Josh woke up at 8pm feeling much better and we watched a movie together. Today he’s up at 10am and feeling good, even though he vomited earlier. The morning is spent catching up on the football news, reading and watching TV. His lunch arrives around midday - it’s poached salmon and chips and reasonably edible. Claire and Joseph arrive soon after. Joseph is sporting a rather noticeable 1 inch gash on his nose from having three boys in year two shove him to the ground and jump on him to try and pinch a football that year one were playing with. It’s only a superficial wound but it looks very impressive, like he’s been wrestling a Great White Shark. These things happen, but it’s nice to hear the school clamped down on the boys involved quickly and correctly with an equipment ban on the playground. The plan is to take Josh out in his wheelchair and, after initially getting upset because he thought we were going to London Zoo, we settle for the local park where he watches a couple of football matches being played before climbing into the car and having a drive around London. We managed to take in St Pauls, the London Eye, Big Ben, Westminster Abbey, Buckingham Palace and Trafalgar Square without falling foul of any bizarre one-way systems or running into a demonstration. It’s a wonderful feeling having the whole family in the car together and when Claire and I run out of interesting tour guide facts about where we are, Josh takes the role of DJ blasting out one favourite song after another on the CD player. The boys play Playstation when we’re back in the room before Joseph and I head off home. It takes almost 2 hours to complete our 12 mile journey, although most of that time we were locked in a two-mile stretch of chaos around New Cross. By the time we’ve eaten it’s almost bedtime – although Joseph gets to try out his Taekwondo moves on me first in a big fight. Those boys were lucky he’s been taught only to use them when absolutely necessary.
