Thursday 11th – Wednesday 17th August
It’s good to be home and by that I mean back at Great Ormond Street. More than half my life is spent here and it’s packed with familiar, welcoming faces, so it really does feel more like home than home to me. Probably even more so for poor old Josh. Joseph and I drove up on Thursday and all was quiet across riot torn London. Driving through New Cross, it was impossible to tell which shops were boarded up because they’d been ransacked and which had just gone out of business due to the recession. Josh is, somewhat predictably, asleep when we arrive but wakes after a couple of hours. His skin has improved, but only after three applications a day on his body, limbs, face and scalp. He’s losing his hair and there’s no guarantee it will ever come back. His hairline looks like Rooney’s before his expensive transplant. Guess we’d better start saving up now. After hardly eating at all in Italy, Josh wants pizza today. Ironically, when I asked Joseph what he wanted me to make for lunch on Tuesday he said Carbonara. It appears Italy lives on in our stomachs, if not our hearts. The afternoon goes quickly and Josh has a quick power nap an hour or so after Claire and Joseph leave before waking to watch ‘The A-Team’ with me. We watch it with subtitles on, even though we’re wearing headphones, as pre-recorded DVD’s are becoming quieter and quieter these days – probably due to some European By-law about sound levels. Luckily there isn’t that much dialogue in the movie, although the subtitle ‘ Loud Explosion’ pops up rather a lot.
Ophthalmology returned on Friday at 9.30am to examine Josh again, which meant I had to wake him and put drops in his eyes an hour earlier. He was far calmer about it than I’d be at that time in the morning. The haemorrhage is in his good eye is still there, so they’ll be back on Monday to check it again. There’s no need to put drops in his blind eye anymore as the cataract in it makes it impossible to examine. Cosmetically, we can probably find a way to address how it looks in years to come, but it’s not exactly a burning issue at the moment. Ward round doesn’t really happen today, Just a fleeting visit from the doctor in charge to see how we are and reiterate that they are looking into using ECP to control the Graft Versus Host Disease( GvHD) of his skin and prevent it spreading elsewhere. ECP stands for Extracorporeal photoimmunotherapy and involves removing and separating his white blood cells, exposing them to UVA light and then returning them to his body. At it’s most basic, it’s a way of treating his GvHD without using Immunosuppressive drugs that would compromise the problems in his brain. It won’t begin for some time as his new, targeted lymphocytes need to be given the best possible chance to overcome the JC virus in his brain first. There’s still a debate about whether this will happen in London at St Thomas’ hospital or up in Rotherham. You can guess which we’re rooting for, but the decision will be made on medical grounds and what the safest option is, so wherever we end up it will be the best place for Josh. His skin is under control at the moment but could flare up at any time. Josh and I put the finishing touches to our two new fantasy football teams when he wakes at 2pm. One league has a PS3 as a prize, the other £500,000, so you can guess which one I’m trying to get him to concentrate on. His first physio session since we left for Italy takes place at 3.30pm after which he’s exhausted and has a sleep. So do I. We both wake after an hour to read books and watch Batman cartoons together. He is so much his father’s son sometimes...
It’s Saturday and Claire and Joseph are off to a family christening up in Stratford-on-Avon. I nip out while Josh is asleep to pick up our photos of Italy and the boy’s birthdays from Jessops. In the afternoon he wakes up for his Pentamadine Nebuliser( the one that comes as a gas that he breathes in and I wear a mask to avoid). It hasn’t been done properly the last two times, but this time we know it’s worked as it leaves us both with headaches – his considerably worse than mine. Josh sends me out for pizza again, but only manages a couple of bites. It’s impossible to put him on a proper diet as he eats next to nothing, so we just give him what he wants when he wants it. It probably adds us to less in a week than a size-zero model picks at for breakfast. We try to watch the day’s Premier league goals on a new ESPN app for the iPad, but predictably it doesn’t work and judging by the reviews, we’re not the only disappointed football fans out there.
Josh is up early on Sunday and I’m glad of the company as it gets pretty lonely in here at the weekend with no doctors, teachers or physiotherapists to break the day up. His feet swelled up last night, but seem okay today. He’s been on TPN since coming back from Italy. They stopped his elemental feed just in case it was irritating his stomach and bowel and was behind his sudden bout of pancreatitis. It’s a real step backwards, but hopefully only a temporary measure. He’s off pain relief now, having not needed a push for two days. His liver enzymes are back to normal again too, so whatever it was passed quickly. I suspect it was brewing while we were in Italy but waited until he was back here before kicking off – in much the same way most of the working population are ill the moment they go off on holiday and relax. Josh has his best day in some time, staying awake until gone 9pm. We played various games on the iPad in the morning ranging from chequers to snooker, then watched Man Utd beat West Brom on Sky. He rounded the evening off with a little Karaoke after having his dressing changed and fell asleep swiftly after that. Claire called to say they’re back home safely and had a great time, although she couldn’t sleep last night and started playing Spider Solitaire on her iPhone at 2am. Feeling something crawling up her arm, she tried to brush it off and ending up flinging her phone across the room in fright, narrowly missing Joseph who was sleeping on the floor beside her. Turned out it was an enormous and very real spider. Either that or these 3D games are getting far too realistic...
The weekend’s over and another week begins. Claire and Joseph arrive around midday, just before I have to put Josh’s eye drops in. He’s been awake for an hour, so in theory it shouldn’t be a struggle but it is. He eventually lets me do it successfully and resumes his FIFA football match against Joseph. We all eat together, which doesn’t happen often. Play resumes, but Josh tires quickly and we set off home just after 2pm, passing the ophthalmologists in the lift on their way to examine him. Back at our local park, Joseph is trying his hand at BMX stunts when he stumbles across a few boys he knows from Year 3 and 5 at school and they cycle round and round the park together, chattering away between bunny hops. Joseph’s in bed when my brother pops round in the evening to drop off Josh’s birthday presents from my Dad, but comes downstairs to show off his martial arts skills while we catch up. He’s only wearing underpants and looks like some kind of demented Ninja flasher.
Tuesday sees us drive into Bromley to take a look at the skateboard park. There are more bikes than boards around and Joseph tries a few tricks on his own BMX after watching for a few minutes. We trade in some old DVDs after that and pick up a BMX freestyle game on PS2 for £1. In the afternoon his cousin takes him for a meal then onto the cinema to see The Smurfs. Joseph spotted another wasp’s nest yesterday in our gutter but it’s too high for me to reach even with a ladder, so it’s a job for British Gas home care. Whether they gas them out or just show them a bill so exorbitant they have heart attacks, I’m not sure. News from the hospital is that it will be at least another month before there’s any chance of Josh coming home. The hospital are keen to start a treatment called ‘IL7’ to help rebuild his immune system. We’ve talked about it before and I’ll explain it again if it goes ahead, but that’s unlikely to happen until his GvHD disappears. His hearing has deteriorated again, although Claire’s spotted wax in both ears which may be partly to blame. There will be an Audiology review in the next 7 days or so. They’re planning to put him back on feed on Monday, but will go softly, softly. His immune reconstitution is still in a bad way. There are no naive t-cells being generated in his thymus, which is still not working despite one of the doctors being naively optimistic before we went away. On a brighter note, there’s a good chance Great Ormond Street will refund our travel and accommodation costs from Pavia, as the Italians didn’t charge them anything at all for the treatment itself. Every little helps.
My last day before heading back to GOSH is a mixed bag. With all the washing and ironing out of the way, we’d planned to go somewhere nice today but have to wait in for the wasp man. He’s arrives early and is gone before 9am, but Joseph isn’t keen on doing anything that involves a long drive. We hit the skateboard park again while it’s a little less busy then try and build a ramp in the garden at home out of bricks and hardboard. It’s all a bit Blue Peter, but does the trick and keeps Joseph quiet, In the afternoon we head to Virgin Active only to be told that it’s inactive as far as swimming’s concerned as both pools are closed. We’re both disappointed and pretty angry too. Whilst they point out they’ve had notices up around the place for a week about the closure, they could have at least emailed their members. They’re quick enough to send out messages when they put up membership costs. Josh’s big news is that he had a bath today for the first time in several months. His skin was so itchy the night before that Claire decided there was nothing to lose. She had to beat him at Yahtzee twice before he reluctantly agreed though, but it doesn’t appear to have made his skin any worse and what little hair he has left on his head is actually looking better.
It’s been a strange week as we’re in limbo again and have no real idea when or if we’ll be leaving GOSH in the near future. The trip to Italy was a real milestone from a medical point of view, but it won’t really change much as far as Josh is concerned. His struggling immune-system remains the most immediate and long term issue and it could be anything from a month to a couple of years before we get to grips with that. His diarrhoea hasn’t gone away and there’s no real explanation for his lack of mobility and weight issues, as his steroids have been substantially reduced over the last 12 months. It’s hard to see him having anything vaguely resembling a normal life with his hearing difficulties, partial sight loss and mobility issues and quite how he’ll fit into the education system, having been out of the loop for over 3 years, is anybody’s guess. I was sorting out photo albums late last night and the pictures of Josh on his 10th birthday literally took my breath away. The physical ache of seeing him so happy, so vibrant, so slim and so handsome, hurts so deep down inside that I feel like my soul’s been ripped from my body. We’ve been on a long and traumatic journey, but in many ways, the toughest times are still to come...
