Monday 21st March
One of the patients on Fox ward died today. A young girl aged 6 a few rooms down. It was very sudden. She’d been waving at Claire through the window only yesterday and the whole ward is in shock. It’s a day of tears and sobbing in the corridor as parents and nurses mourn. Claire tries to keep a low profile during the proceedings, partly because it brings back all the horrific memories of losing Alex but mostly because she knows there’s nothing she can do or say to ease the pain of such a loss. Sensing how upset she is, Josh casually reassures her that he’s ‘still here’ in a way that only he can. He’s truly wonderful. My day at home pales into insignificance alongside these events. A builder comes to assess our leak and says it’s nothing to worry about. I have so much work to get through that I almost forget to pick Joseph up and only just make it on time. He has a swimming lesson then goes to his Auntie’s for dinner while I head to school for parent’s evening (or parent evening, in our case) to hear what Joseph’s teacher has to say. There are no nasty surprises and we’re very proud of him. When I tell him this in the car, he’s so happy he bursts into tears and gives me a great big hug. It was worth looking at his workbooks just to see how many times he can slip a King Cobra into a completely unrelated story. He’s out like a light but thankfully I manage to stay awake long enough to do a little more work than last night.
Tuesday 22nd March
It’s school photograph day and Joseph’s hair has a mind of its own. We manage to flatten it with a wet comb but the photo session isn’t until the afternoon and he’ll probably look like Medusa by then. It’s a full-on work day for me and little time for anything else other than 30 minutes at the gym on the way to pick Joseph up from school. We don’t eat until after Taekwondo by which time I’m starving, even though I had the roast chicken dinner for lunch that Claire’s sister made for me the previous night. News from hospital is that Josh has his sparkle back and had a good day, despite his blood results remaining poor. His ankles are still huge and his knees are swelling. It’s been put down to a side effect of one of his hyper- tension drugs, which they’ve since eased off on. The team are now saying the Ganciclovir course was purely to remove HHV6 from the equation so they can see how his white cells respond to his bone marrow top up on Friday. His lipids were stopped again last night but only because they’ve been switched to alternate days. Nobody appears to know who authorised the change. Another BMT transplant patient we know died yesterday in PICU. Once again it puts a real perspective on how much the children here are at risk. Josh’s ability to bounce back has been astonishing and we can only hope that he continues to win the many battles he faces every day. His indomitable spirit, or ‘Baekjool Boolgoo’ as they refer to it in Joseph’s Taekwondo classes, is truly inspirational.
Wednesday 22nd March
With me up in London for a meeting at 10pm and Claire leaving for home an hour later, she’s organised cover at the hospital for Josh until after lunch. All goes to plan with me dropping Joseph at a friend’s house to make an early train and drop my stuff off at the hospital on the way in. Josh is up and looks well although his ankles are still like an elephant’s. It was foggy at home when I left, but London’s basking in Spring sunshine and I’m overdressed and sweltering in the heat. Fortunately my brain doesn’t overheat and the ideas I come up with during our brainstorm aren’t too half-baked. I try a new fish and chip shop in Holborn for lunch then take a stroll back via a couple of parks. Josh has been busy all day and is learning about ancient Egypt when I walk in. He’s written ‘ I am very upset because I want to eat cheese very soon’ in hieroglyphics on a sheet of papyrus. The boy has a one track mind. We manage to finish a level on Lego Harry Potter he’s been stuck on for a couple of days, then go out in the sun. There’s no football in the park, so we travel further afield. Unfortunately this results in his wheelchair tyres being covered in dog poo. We manage to wash most of it off by driving through a fountain in Russell Square and head for the British Museum. It’s empty downstairs so we take a walk through the Egyptian section with Josh translating sections of ancient script as we go, so there’s no need for a tour guide. We’re back for 5.30pm. Josh watches TV while I set to work on cleaning his wheels, which takes me a good half hour and nearly a whole pack of Sani-cloths. He fades fast and is asleep before 7pm. His albumin is low again which could explain his swollen feet, so he’s being topped up overnight.
Thursday 23rd March
It’s another glorious day in the Capital and I manage to get out for a stroll while Josh is in with his teacher. There’s little to report as far as his health is concerned today. He’ll need a blood transfusion and platelets, but we don’t even bat an eyelid anymore. He has the heart echo we requested at midday and there’s still fluid there, but still no explanation. Lunchtime is spent sitting on a park bench tearing an American Hot pizza apart with my bare hands like some deranged cannibal. It appears Pizza Express don’t pre-slice their takeaways, they give you a plastic knife and fork so you can do it yourself. Having been given two plastic forks by mistake, my task has been made infinitely messier. Even the watching pigeons turn their beaks up in disgust. Josh comes off his TPN shortly after I’m back and we head for Covent Garden, We stop to watch a street-dancing comedian who isn’t funny and doesn’t dance. Josh is far from impressed, but at least he gets some fresh air. Back on the ward, he has a long hot bath and puts on the new Phineas and Ferb pyjamas we bought at the Disney shop. Cool dude ! While he watches TV, we get a visit from a doctor that looked after Josh at The Princess Royal ( our local hospital) about 4 years ago. He’s joined GOSH as part of a team that’s looking to improve practice and communication here for children under the care of multiple departments and would be very interested to hear if we’ve experienced any problems. Hmmm... I wonder how long he’s got ?
Friday 24th March
Josh wakes relatively early to start work on an English grammar book. He’s struggling today and a little confused, but I think it’s down to tiredness rather than anything neurological. His red blood cells are low and, whilst he had platelets last night, he didn’t have a blood transfusion because the doctor forgot to order any. Remind me slap a great big yellow Post-It note on their forehead next time our paths cross. By the time Claire arrives for changeover, Josh has run out of steam and is back in bed enjoying a quick nap before school. I was scheduled for a work meeting in the afternoon that doesn’t happen, so I head home instead to enjoy the sunshine. Joseph’s at a friend’s house this afternoon, so I have time to do a spot of gardening and go to the gym before picking him up. He’s tired from football and trampolining and falls asleep straight after a story. Back at GOSH, Josh perked up long enough for a good gym session in the afternoon before having the stem cell top up we’ve been waiting for. It passes without incident and, if we’re lucky, we’ll see Josh’s white cells start to pick up in around 3 weeks or so, although it could be many months before his lymphocytes show any real improvement . Feedback from ward round is that they’ve spoken with Tadworth and his funding is secured until the end of the year, as is his place. If things go well, we could be there before the end of April...
Saturday 25th March
Spring sunshine gives way to rain, but not until after Joseph’s football session thankfully. Today saw one of the watching dads yelling aggressively from the touchline throughout the match. I’m all in favour of being competitive, but they’re only 6 and it is just a kick around. Joseph and I spend the rest of the day pottering around indoors and end it both dressed as Batman. Don’t ask. Josh continues to be tired and had two naps during the day – one around lunchtime that lasted 3 hours. His HB has gone up, even though he didn’t have a transfusion, and his white cell count has shot up overnight too, even though it’s far too early to be down to his stem cell top up. He remains a mystery. The clocks go forward an hour tonight which means an hour less sleep for everyone. I’m determined to go to bed an hour earlier to make up for it, but it’s still gone 1am before the light’s off.
