Friday 26th November
Guess I spoke too soon last night. By 9pm I felt terrible and soon after had to make myself sick. It was only a temporary reprieve as I spent the whole night throwing up really violently with the other end just as active too. Luckily I managed to make it to the bathroom every time so I wasn’t sick near Joseph as the Norovirus is meant to be particularly contagious - even the alcohol-gel at the hospital doesn’t keep it off your hands. I ended up having a bath around 4am as I felt so cold and dirty. I haven’t been sick since then so hopefully it’s on the way out already. It must have gone 5am before I finally slept. My body aches more than it ever does after the gym which means vomiting is a better form of exercise than lifting weights. I lost 7 lbs overnight according to our scales and am seriously thinking of cancelling my Virgin Active membership in favour of a contagious disease clinic. Joseph appears to be fine but whilst he couldn’t have been infectious yesterday as he hadn’t seen me for 3 days, today might be a different story and it’s too big a risk to take him in - even though it means I won’t get much chance to convalesce. Joseph understands why I’m not on top form and we play board games, draw and do maths until lunchtime when he eats and I don’t. News from the hospital is that Claire’s still feeling okay and Josh is recovering well. Both wards are now shut, the kitchen’s closed and patients aren’t allowed out of their rooms. Claire had to go to Primark to buy clean pants and shorts for Josh as he’s running out of everything. It’s frustrating being home but not feeling well enough to do anything, although I just about manage to hang two sets of lights on the tree without feeling giddy and falling off a chair. Joseph watches another CBBC wildlife programme called ‘ Roar’ then spends the afternoon dressed as Batman, battling against invisible enemies and attacking me from time. I don’t put up much of a fight. He always seems to instinctively know how people are feeling and adjust his behaviour accordingly – it’s a rare gift. Back at the hospital Josh has a little sob because he was expecting me up there today but sounds in good spirits otherwise when we talk on the phone. Ophthalmology had just been in and his eyes are looking fine with no more haemorrhaging even though his platelets are so low his lips are starting to bleed where they’ve become dry and cracked. Hopefully I’ll be okay to swap over with Claire on Sunday. The rule is don’t return until 48 hours after your last symptoms and it’ll be at least that by the time I arrive, provided I don’t have a relapse. If I do, I guess it’s better to know sooner rather than later so I decide to risk eating and settle on Asparagus soup and toast. At least it’ll be an interesting colour if I see it again later tonight...
Saturday 27th November
There was a time when we used to read the blog to Josh every week. This time last year when he was having his transplant, it was far more light hearted and we were full of hope. It’s been much darker this time around for obvious reasons, but hopefully in a few years or even decades he’ll be ready to read it and marvel at how amazing he was in spite of the curved ball life threw at him. Claire calls early to see how I am and what we’re up to today. Josh has had several platelet transfusions and a blood transfusion overnight and seems okay, although he had another vomit in the bath yesterday. The TV’s aren’t working again at GOSH which is a real pain as Josh was looking forward to X Factor tonight. The new entertainment system has been catastrophic, literally from day one, and given that none of the children can leave their rooms at the moment it’s shameful that the man who needs to press a reset button somewhere to fix it, isn’t capable of doing it over the weekend. Joseph is desperate to go out despite the cold weather. He insists on wearing flimsy football shorts with long socks stretched over metal shin pads. What a picture ! We drive to Keston where the ponds are frozen solid and feed the ducks old crusty rolls that they slip and slide all over the place to reach. It’s hilarious to watch and Joseph christens it ‘Ducks on Ice’. It’ll be on at the O2 next year. Joseph’s bike riding is far less successful than his bread throwing as he struggles to get a grip on the wet leaves that cover the paths and I have to carry his bike until he finally succumbs to the cold and asks to go home where the heating’s on and it’s warm and snug. We have a long chat with Josh on the phone and then just ‘ hang out together ’ as Joseph puts it, for the rest of the day. By the time I’ve given him a bath and put him to bed I’ve had enough to eat and kept it down long enough to know I can go back to the hospital tomorrow, although Joseph won’t be able to come up with me. It’s another late night as there’s plenty to do before I leave in the morning, but it’s nice to be active again rather than on my knees with my head stuck down the toilet…
Sunday 28th November
There was a time when we used to read the blog to Josh every week. Last year when he was having his transplant it was a much lighter read and he used to chuckle along with it. He hasn’t seen it this time round as it’s tough reading and still too raw, but one day he will and even if it’s years before he gets around to it, I hope he can feel all the love for him in these pages and be very proud of himself for what he’s come through and how he’s dealt with it all. He had a bad night by all accounts and Claire hardly slept as he was vomiting, passing diarrohea and complaining of headaches most of the night. On the plus side, Joseph and I slept like two Yule tide logs and he’s showing no signs of the Norovirus so far. We have a lazy morning before I drop him off at his grandparents and head into London. The thermometer tells me it’s literally freezing in the Capital, but inside the car it’s warm and the clear blue skies and bright sunlight make it feel like spring. I call Claire to tell her I’ve arrived then head to the canteen for chicken and chips for lunch. The cashier offers me staff discount which initially makes me think I’m distinguished enough to look like a doctor, but in hindsight probably means I look so old I couldn’t possibly have a child young enough to be a patient here. Josh is having more platelets again today and is still suffering with tummy pains and headaches. Claire massages Tiger Balm into his forehead while we watch Match of the Day. Man United make his day by winning 7-1. Once Claire’s gone we amuse ourselves for the next 4 hours or so before watching last night’s X Factor – well, just the bits with One Direction in, actually. He’s desperate for bed by 6pm and just as he’s nodding off one of the nurses tries to move his legs so she can sit on his bed to take his blood pressure. I’m pretty sure they’re not allowed to do this at the best of times and tell her off. With a virus going round the ward there seems little point in wearing an apron over her clothes in the room if she’s going to plant her big, fat unprotected butt down on his bed sheets.
Monday 29th November
It’s astonishing how your mind and body become conditioned to react in certain ways. When I was at home I used to find it so hard to drag myself out of bed in the middle of the night if I heard Josh call out. Here, I’m up like a shot the moment he utters a word. On three or four occasions he needs the toilet and I’m there within seconds. On another it’s just the nurse muttering and I scare the life out of her as I leap out from behind the curtain like Norman Bates in Psycho - without the shower or old lady wig, obviously. Josh is suffering today. He feels nauseous most of the time, despite his anti-sickness drugs, and diarrohea is still a problem. He’s not on any oral medication at the moment because of his vomiting. Everything has either been switched back to IV or suspended if there’s no equivalent. His feed has stopped too. He shows no real signs of wanting to get up or even stir for most of the day, although he makes a brave stab at physio in the morning for 10 minutes. He has more platelets today and his lips are still bloody. They are looking into finding a platelet match for him, which could take a while but might increase his count for longer periods if the problem persists. He’s too tired to do anything with his teacher and when the physio team return unexpectedly with a Victoria Beckham carrier bag stuffed with David Beckham goodies for him he still only manages to open his eyes briefly to say ‘cool’ and ‘Thank you’ before drifting off again. Old ‘Golden balls’ has been doing the rounds upstairs on Elephant ward but isn’t allowed down to see Josh due to the ward being closed off. He does manage the next best thing though and manages to sign both his and Josh’s name on a mini-football. A few of the nurses are tempted to wander up and ogle him but a mixture of conscience and devotion to their patients gets the better of them and they stay on the ward. I’m lying on the bed reading when there’s a tap on the door. It’s an ophthalmologist arriving unannounced once again. He starts to come in but I step outside instead as he’s not wearing an apron or gloves. Having been so concerned about how I must feel as a father seeing my son so distressed last week, he’s made no effort whatsoever to follow the protocol we agreed. When I challenge him on this he says he forgot. I ask a nurse to put the eyedrops in which takes about 60 seconds as Josh is fantastic, even though he’s only just woken up. The ophthalmologist returns an hour with my Croatian friend, who is again very good with Josh but once again spends far longer than is comfortable trying to get her colleague to see his haemorrhage. Josh is again reduced to tears and it’s painful for me to watch because it’s so unnecessary. It’s like letting a plumber flood your house just so their apprentice can see the crack in the pipe that’s causing the leak. He still can’t see it and they give up eventually. The headline news is that the blood in Josh’s blind eye has flooded the eyeball so it’s impossible to see how it’s doing but that’s expected and not a worry. There’s a new haemorrhage in his good eye which is most likely down to reduced platelets, high blood pressure and vomiting. Again it’s not a big concern at this point. Josh continues to sleep until one of the student nurse offers to relieve me. That probably came out wrong but I’m sure you know what I mean. It’s cold outside and a welcome change from the stuffy room I’ve been pacing all day. With no sign of Josh waking up and nothing to watch tonight, I buy a cheap second hand DVD from a shop round the corner and a sandwich and head back to the ward. In the 20 minutes I was gone, Josh has woken up full of energy and is desperate to do something. Unfortunately, by the time I’ve got him comfortable in his chair and set up the PS3 he’s feeling sick and starts vomiting again. Ten minutes later he’s back in bed and asleep. What a miserable life he has and yet never a single word of complaint. Does he need any qualifications to be a Saint and are there any vacancies at the Jobcentre ?
Tuesday 30th November
It’s a night when neither of us can sleep for one reason or another. Josh needs the toilet far more often and is drinking water again, which in turn is making him vomit. It can’t be much fun. 5 months living away from home in a single room that you never leave except for the occasional bath. You don’t eat, you’re constantly nauseous and you’ve been made deaf, half blind and are carrying around almost half as much weight again as you were last year. The moment you fall asleep someone wakes you up straps machines that bleep to your arm and, more often than not, forces your eyelids open and shines a blinding light into them. The human rights organizations would be up in arms if a terrorist or a criminal was subjected to a life like this day in and day out. 5 months. Where did it go ? We came in just after his birthday, early in July, and now as I look out of the window the snow is beginning to fall. Whilst our tree is up at home and there are icicle lights adorning the Great Ormond Street awning around the entrance, we can honestly say we’re not looking forward to Christmas and don’t even have a clue where we’ll be spending it. My money’s on here, but all bets are off. Josh’s face is so pale and his lips so bloody this morning he looks like the Joker and I expect Batman to come swinging through the window at any moment capture him and whisk him away to Arkham Asylum. Only we’re already living in a madhouse so it’s hard to see the point. The snow is still coming down thick and fast. From what Claire says it’s sticking in Bromley and already a couple of inches thick. She arrives at the hospital not long after Josh’s physio session. He says he’s not going back to sleep afterwards but within minutes he’s feeling ill gain and curled up in bed. Claire and I have our swiftest change over ever so I can get as much time as possible at home, as I’m back here tomorrow for the rest of the week. As I leave the hospital I bump into Darth Vader and several Imperial Stormtroopers standing outside in the snow looking miserable. It’s a little surreal and I pause long enough to take a photo before heading off. My train arrives on time despite the bad weather,but just as I roll up at home Claire calls to let me know that St James' is closing and I can pick Joseph up straight away. With a sledge under my arm, I trek up the hill to the school where they’re all watching a Pixar DVD in the main hall. The snow is really coming down heavily by now and traffic is at a standstill. Joseph is happy being pulled along on the sledge for about 5 minutes before his bum starts to ache and we walk the rest of the way stopping every few minutes or so to bombard each other with snowballs. We eat early only to find Joseph’s swimming class cancelled at Virgin Active. Luckily I’ve brought my swimming trucks and we have the pool to ourselves for an hour. There are only about 5 people in the whole place. Josh has slept most of the day again at the hospital and during ward round they decided to reduce his ciclosporin rather than his steroids, which doesn’t appear to make much sense and we may call this into question later in the week. Claire has an action-packed week at home planned, so let’s hope the trains are running tomorrow and we can swap back in the morning.
