Sunday 18th - Sunday 26th September
In the end, I released our locusts into the wild – not just to spare Claire having to deal with them when she got home, but because Joseph didn’t want to see them die. It was tempting to set them free near the allotments behind Virgin Active so they could gorge themselves on the prize marrows and leeks there before they snuffed it, but we decided on the local park instead. As they hopped off into the long grass to the strains of ‘Born Free’ I couldn’t help but wonder how long they’d last once the temperature dropped. About 10 minutes probably, unless a bird snacks on them first. C’est la vie. After picking up Joseph’s BMX stunt pegs from Holborn, we roll up at the hospital where we all enjoy a good couple of hours together before Josh and I settle down to watch Man Utd v Chelsea. Only trouble is Sky Sports 1 is on the blink again and all we can get is endless help videos playing over and over again on a loop. Nothing can be done until Tuesday at the earliest, so Josh is left disappointed once again. We watch yesterday’s games on DVD instead and follow the Utd match on text commentary at the same time. It’s not the same, but he still manages to get excited as we read about the goals flying in. X factor’s next, followed by Joshie’s usual Karaoke session afterwards. He’s definitely got his sparkle back at the moment and his batteries don’t run out until well after 10pm.
Monday begins with a Gastro doctor popping in to tell me Josh’s scope is planned for tomorrow. I sign a consent form and point out that BMT want to do another skin biopsy at the same time – even though it’s not been added to ‘other procedures’. They aren’t planning on giving Josh any bowel preparation before his scope as he has diarrhoea anyway, but I insist they go through the normal procedure as it could be weeks before we get another slot in theatre if it goes wrong. I wake Josh at midday with the not so great news that he can’t eat until tomorrow evening. He looks a little upset, but takes it in his stride as usual. With the play specialist diaried in after school, I have nearly 2 hours for lunch and ‘phone a friend’ who happens to be free. We meet up in Chinatown and catch up on the last few months. It’s the first time lunchtime I’ve spent with someone else for many months that I almost take a newspaper along to read out of habit. Luckily I don’t need it. I’m back for Josh’s physio session, which takes place in his room due to his mysterious infection and we play catch with Josh’s inflatable globe ball while naming countries beginning with every letter of the alphabet. We don’t expect one for X, but W proves so elusive we have to Google it. Any guesses ? Text your answers to 07771 660 764. No prize it’s just for fun. Texts will be charged at a premium rate with all proceeds going to Ant and Dec. Josh stays awake for the rest of day. His skin looked clear this morning, but there’s a bright red patch on his left arm by the evening - this is probably a good thing and I’ll ask them to take the skin biopsy from there tomorrow. His bowel prep has started and it could be a busy night ahead. His stools have to be graded and need to be completely clear for us to get the best photographs of his bowel - although I won’t be putting the pics in our family album no matter how well they turn out...
It’s a far better night than expected and Josh is up no more than usual. For some strange reason he wasn’t put on Diarralyte last night which means we’ll have to keep an eye on all his electrolytes today. I wake him at 10.20am as it’s his last chance to drink water and he decides he want to get up shortly after that. This wasn’t part of the plan and I’m worried he’ll start to feel hungry before long as he’s been off his feed for nearly 24 hours. As it turns out he’s kept far too occupied to think about it. His cousin arrives after his school lesson and she spends a couple of hours playing Monopoly Streets and Sonic All-Star racing with him while I sort out a couple of work bits and pieces. There’s a minor panic an hour before we go down to theatre as it appears nobody’s spotted Josh’s falling platelets. He needs a transfusion before going down as it would be too dangerous to take any biopsies otherwise - in case his blood didn’t clot. When we eventually take him down to theatre, Josh has only two worries – having a cannula put in and the medical staff wearing surgical hats as they freak him out. He’s okay on both fronts, although there is a dodgy moment when I discover that nobody in the theatre is aware he’s having a skin biopsy done at the same time - despite it being added to the consent form. Josh goes under quickly and peacefully, although his last request to look at my face while he goes to sleep makes me feel very emotional. We’re grown used to Josh having general anaesthetic, but it’s still difficult walking away from him when he’s asleep and looks so vulnerable. I walk his cousin up to King’s Cross station and am back at the lift just as I get a call saying Josh is coming round. It’s perfect timing and means I’m up there just before the nurses. He’s very distressed having vomited blood when the camera tube was removed from his throat, but he soon calms down after a sip or two of cold water. The consultant tells me all went well and shows me the photographs. His throat and stomach look completely clear of ulceration as does his large bowel. The small bowel looks good overall too, although there are signs of inflammation near the rectum. The good news is they can’t see any sign of his Colitis or Crohns and I’m told there’s nothing to suggest he has GvHD of the gut either, although I’m not sure if that’s good news or bad news. Either way it means we’re still on schedule to be discharged next week. They took several biopsies from the inflamed area and we’ll have to wait and see the results. The gastro consultant thinks it’s only a minor viral infection, but you never know with Josh. He settles down once he’s back in our room and appears to be recovering well, although his blood pressure remains over 160 for some time. It comes down slowly with drugs and after a 30 minute nap to watch the new Pirates of the Caribbean movie with me. It’s much better than the last two and we really enjoy it - him especially as I nip out to McDonald’s halfway through and he finally gets to eat. He sleeps well after that, but I don’t. Too much going on in my head again. Claire’s the same at home and, as she was feeling under the weather anyway, resorts to Night Nurse to help her. I daren’t ask our night nurse to help me sleep in case she takes it the wrong way and slaps my face. Josh’s first poo of the night looks like raspberry jam and contains so much blood I nearly pass out. His second looks like someone poured olive oil over coal dust – all black and cloudy. After that they settle down and appear back to normal.
Wednesday comes and goes without too much drama. Josh is shattered and doesn’t wake up, not even for school. I talk to a doctor about his knees which were so sore he screamed in pain when I applied his steroid cream in the middle of the night. They look a little swollen but there’s no sign of inflammation. We write it off as yet another mystery we’ll never solve. Where are The Famous Five when you need them ? No word on when we might be going home yet, but I’m beginning to think it’d be a mistake to spend 3 days at our local hospital first as they’ll learn nothing new looking after him as we do all his meds anyway. Far better to just have a couple of hours with them to discuss his case. Josh has a gentle work out in bed during his physio session but ends strongly, standing unaided for 5 minutes. Ophthalmology tell us his haemorrhage is looking better, but there’s scar tissue left behind on the eye from the blood. It’s nothing to worry about though and won’t affect his vision. Josh is up for a couple of hours after that but tires quickly and goes back to sleep. I keep him off his feed for a while as he’s eaten today and it’s about time we started to watch his calorie intake. The dietician’s don’t, even though we write down everything that he eats. Just as I’m turning in for an early night, Josh wakes up and rediscovers his mojo. Barcelona are playing Valencia which keeps him quiet for a while, but he livens up after that and it’s gone 11.30pm before I finally climb into bed. It ends up being another sleepless night with Josh up every hour and sometimes twice an hour until 7am. It doesn’t help that there’s so much to think about now we might be going home. You’d think we’d be excited after nearly 15 months away, but it’s downright scary on every single level...
It’s Thursday and Claire’s still not feeling 100%. I offer to spend the rest of the week here when she phones in the morning and she gratefully accepts. I have enough clothes up at GOSH and will get to watch Man City thrash Everton live on Saturday if the TV in our room is working by then. The only drawback is that I have a meeting in the diary at lunchtime but can’t get Josh up. In the end he vows to wake up when his teacher comes and I leave him sleeping in bed with the monitor on. I’m back by 3pm to find him fast asleep again, but true to his word he managed school in-between and did really well. He’s up for physio 30 minutes later and does really well again, managing to balance and kick a football on his own which is fantastic to see. The exertion takes its toll though and he’s back in bed before 7pm. He’s up again an hour later for a couple of hours though, which is par for the course these days.
It’s an early morning for Josh on Friday. He’s up reading before 11am and wide awake for ward round. There’s a shock in store as the results of the biopsies are in and have revealed that he does has GvHD of the gut. It’s a surprise to everyone except Dr Robert, who has always suspected it. Normally this would be very depressing news as it really compromises Josh’s health, but in this case it’s not all bad. It could not only explain the frequency and consistency of Josh’s stools, but be the reason why his immune system hasn’t rebuilt itself and his thymus isn’t working. If we can treat his GvHD successfully he could start to recover. The other surprise isn’t quite so pleasant as a new virus EBV ( Epstein-Barr virus) has been found in his blood. It’s a relatively common one after a bone marrow transplant, but it’s unusual to get it so late. It can cause glandular fever and chronic fatigue and is closely associated with some types of cancer, so they’re looking to get it under control as quickly as possible. Josh will have a 6 hour infusion of Rituximab on Monday which is a chemotherapy drug that will wipe out all his B-cells for several months ( these are far less important than his T-cells) to pre-empt any future problems as he’s more at risk because of his low lymphocyte count at the moment. If and when his immune system recovers the virus should cease be an issue. I’m writing this knowing it must all sound like gobbledy-gook, but it’s as much for me to understand what’s going on as it is you. Luckily I’m on the phone to Claire when much of this is explained and she overhears it, so I don’t have to try and explain it afterwards. I’m out of the door as soon as Josh’s teacher arrives and, buoyed after tracking down this season’s Match Attax cards and folder for Josh, I order a rump steak and sit in sunny spot outside a pub called the ‘ Sir Christopher Hatton’. I had a bizarre date there once about 10 years B.C (Before Claire). I was working in an ad agency just across the street from the Jewish Chronicle and all the guys were infatuated with a gorgeous girl who worked there. While they were staring out of the window at her one day, I nipped up to the next floor with a layout pad and a pentel marker and started writing huge signs to catch her attention. I arranged to meet her at the pub that lunchtime, but when she turned up she was so short she only came up to my chest and I nearly didn’t spot her. We carried on seeing each other for a couple of weeks but I never fully recovered from the shock ! Josh is awake when I return from memory lane and is as excited as I am about his new cards. He conks out around 5am and does his usual trick of waking a couple of hours later. When he settles down again for the night, it’s another tough one with him answering the call of nature every hour or so. He always manages to go back to sleep straight away but I don’t know how. If only he’d share his secret...
Claire calls me Saturday morning while Joseph’s playing football. She’s managed to get a few more ducks in a row regarding Josh coming home and our care package, but everything still has to go to a committee - even though a previous plan that would cost far more has already been approved. Josh will probably be a teenager before it gets signed off. It’s a strange world we live in. One of Joseph’s wooden drum sticks broke a few months ago when he was bashing his Early Learning Centre drum kit. We keep gluing it, but it never lasts long. Claire took it back to ELC for a replacement yesterday and they said yes. However, rather than just give us a new set of drumsticks, she was told to haul the entire drum kit back and swap it for another one. When she got to the shop a different assistant asked why she hadn’t just brought the drumsticks in. I’m amazed Claire didn’t give the staff the kind of ear bashing Joseph dishes out when he’s on his drums. Josh is up to watch the football at 12.30pm but goes straight back to sleep after the match. I don’t get out today, but looking out of the window it certainly doesn’t look like the scorcher the weathermen promised. Yesterday they told us not to put our BBQs away just yet, even though they told us to pack them up 4 weeks ago because Summer was as good as over. Hard to believe someone actually pays these people. Josh is up before X Factor and on better form, although the TV is playing up and he misses the follow up programme on ITV 2. I can’t say I was too disappointed. He’s asleep soon after that and it ends up being a relatively calm night.
It’s been a long week and Sunday ticks by slowly until Joseph and Claire arrive. Josh is up almost as soon as they’re in the room and we all eat together in there. We manage to get him out in his wheelchair as the weather’s looking a little brighter today – even though it’s a long way off the predicted 81 degrees. I need to take Josh’s spare wheelchair home today and Joseph decides to sit in it while Claire wheels it along the corridor. Josh and I try very hard not to make it into a race but give in and we end up having a mad sprint to the lift. It’s a photo finish but I think we edged it. Josh tries to kick a football around the park but he’s far less steady on his feet than he was in physio and doesn’t last long. He then complains about his nose feeling strange and we rush back to the ward, It takes less than 5 minutes, but it’s long enough for him to develop a raging headache. Claire gives him morphine straight away, but it’s not just the pain that’s a worry – he was quite disorientated once we got back and it was a struggle getting him up onto the bed. Joseph and I head home and Claire calls around 8pm. Josh woke up at 6pm but was very tearful and had another headache and a ‘spongey’ arm and leg that he couldn’t control. Claire stroked his head until he fell asleep but he was up again when she called and sounded distressed. Once I’m off the phone, I start moving things around in the dining room to make room for Josh’s new bed which should be delivered this week. Whether he’ll be in it by the weekend is anyone’s guess...
