Monday 23rd May
The morning is spent finishing a work project. Joseph has swimming after school and I slip off to the gym while he’s in his class. I haven’t had time to get any food in and it’s 6.30pm before we’re both showered and dressed so we head for McDonalds to eat. Hard to believe Joseph will be six tomorrow - it’s not just the days we lose track of in hospital, it’s the weeks, the months and the years. Josh had a scan yesterday and they found fluid around his lungs they can’t explain, but nothing amiss in his tummy. Gastro wanted to start elemental feed today but he’s still vomiting so much it would be better to wait a few days. It appears that the lead gastro consultant, who sat in on Thursday’s multi-disciplinary meeting , was mistaken when he said Josh’s stones and sludge had been washed away after he was scoped. This may well explain why he’s had another episode and makes removing his gall bladder a potential option again. There are risks attached given how low his immune system is and we still don’t have the biopsy results back yet, but if surgery can put a stop to his pancreatitis we’ll definitely consider it. He’s still in severe pain and Claire was up every 15 minutes last night until around 6am, which tends to be the magical time when exhaustion takes over and he actually sleeps for couple of hours. Let’s hope he settles down a little earlier tonight...
Tuesday 24th May
Talking of sleep, I accidentally drifted off at the same as time as Joseph last night and didn’t wake up until the wee small hours of the morning. With all his presents still to be wrapped and a card to make, it was well after 3am before I was back in bed – giving me just a couple of hours sleep before the birthday boy woke up. One of his presents was a pair of pop-up goals so we can play football matches in the garden, which is exactly what we do after breakfast. He’s improving all the time and could even be the next Ryan Giggs. Oh, wait a minute... Claire calls just as we’re leaving to wish him happy birthday and Josh managed to say a few words too. Being apart at key times like this is tough on all of us. It’s like a divorce, but without the arguments or legal fees. Our other halves had another bad night at GOSH with Josh vomiting, itching, weeing or crying out in pain most of the time. By the time we’ve caught up it’s too late to cycle so we drive to school and Joseph proudly walks through the gates wearing an 'It’s my birthday’ badge that’s bigger than his head. It’s the school play this morning and I just can’t get away from pirates at the moment, as it’s all about Blackbeard. It’s the same play Josh did at Breaside a couple of years back so I know all the songs, but resist the urge to sing-a-long. Having seen two different productions now, I still have no idea what the plot is. Joseph does well but is disappointed that all he got to do was ‘one dance and scrub the decks a lot.’ On the plus side he’s unlikely to ever run away to sea now. After washing and ironing there’s just time for the gym before picking him up from school. I’d forgotten to take sweets in for the other children this morning and turn up early to hand over a large bag of chocolate treats. Joseph hands them out dutifully as they file out of the classroom, but makes sure he brings what’s left of the booty home. That’s my boy ! We play in the garden in the sunshine then head to Pizza Express for 5pm. We’re the only ones there which means we’re out pretty quickly and home in time for more fun and games before Claire’s sister arrives at 7pm to read him a bedtime story. I’m off like a shot to catch the 7.28pm to St Pancreas. I catch up with Claire on the phone as I walk up to the hospital so she can race home, but she just misses a train and ends up walking through the door at 10.45pm. Josh wakes briefly to watch a couple of new Power Rangers episodes I’ve recorded but there’s a headache looming and he only manages one before climbing back into bed. He has a good, settled night after that and only wakes twice - at 3am and 6am. Bliss !
Wednesday 25th May
I sleep until 8.30am and miss a neurologist who makes an early call. He tried to see Claire yesterday, missed her and then wouldn’t answer his pager. Today he tells the nurse he’ll be back at 10.30am on the dot but doesn’t surface again until after 1pm. He’s a registrar that’s here for 3 weeks and can’t speak much English. What he does say is totally confusing. It would appear that neurology have sat down and looked at all Josh’s MRI scans and reached the conclusion that it’s not the JC virus that’s causing his neurological problems, but something else. They don’t know what, but they’re expecting test results back tomorrow which may tell them. When I ask how they’ve reached this conclusion, I’m told that in other children there is always a progressive decline in the brain matter with JC, but in Josh’s case there isn’t. When I put it to him that most children don’t recover from the virus so you’d expect that, he flounders and keeps making the same point over and over again like a broken record. Unless the comparison is like for like, surely it’s irrelevant at best and completely misleading at worst ? He says he’ll come back with his consultant later in the day, but I tell him there’s no point until they have test results. When I mention all this to the BMT doctors, they’re shocked. They had no idea neurology were doing tests and struggle to make sense of it as well. They’re rightly annoyed that they spoke directly to me and feel that it undermines their own theories regarding JC, which are hard to dispute. On that front, there has been some progress. Josh’s donor is having his blood screened tomorrow and will give a sample on the 7th June which will go straight to Italy. A month later, we’ll be flown out there on a private plane for the procedure. In all likelihood it will be the week of Josh’s 12th birthday and the 12 month anniversary of when he was admitted this time round. We always said we didn’t want to be at GOSH for his birthday, but this isn’t quite what we had in mind. A quick word about what the procedure involves. As far as I know, the donor’s T-cell lymphocytes are isolated and then pummelled with all the component parts that make up the JC virus. This turns them into T-cells that will recognise, actively seek out and destroy JC once they’re in Josh’s body. In essence, it works like a vaccine and the hope is that it will get rid of his encephalitis and allow his immune system to grow. Josh wakes for an hour and just about manages school, although he’s back in bed by then and tries to sleep through it. I enjoy a break and find an Italian restaurant with a table in the sun. The ward phones me to say Josh would like me to buy some crusty rolls while I’m out and he manages to eat half of one when I get back. He reads for 30 minutes then asks to watch Harry Potter and the Order of the Phoenix which he manages to stay awake for. He’s tired and confused but isn’t in any pain. He doesn’t want a bath, so I give him a good wash, cream him up again and patch up his dressing before he goes back to sleep for the rest of the evening. Back at home, Claire enjoyed Joseph’s pirate play but was as baffled as I was by the story. We try to plan the rest of the week, but it’s tricky for umpteen reasons. In the end we decide I’ll stay until Friday when Claire comes down with Joseph who I’ll take to Madame Tussauds as it’s a school inset day and will hopefully be quiet. I think I’m home Friday and Saturday night then back here Sunday, but I might be wrong. I could do with hiring a really good PA...
Thursday 26th May
It’s nearly June and we’re having April showers. No wonder we never know what month it is. I manage to dodge most of the tropical downpours while I’m out walking round London at lunchtime, but get caught in the last one and turn up at GOSH looking like a drowned rat. Josh started the day well by waking at 9.30am and asking to sit in his wheelchair, but he was soon vomiting, experiencing headaches and back in bed. He sleeps until 6pm by which time I’ve rung out my shorts and slipped into something less comfortable, but far drier. Gastro pay us a visit and want to push ahead with feeding, which is fine. I’ve warned them that he’ll vomit but we’re going to stick with it as see what happens. They want to put him on a new anti-sickness drug which can help stop vomiting caused by encephalitis, but it can cause bad side- effects if used with steroids so the BMT team are understandably not keen. I ask them about a GJ tube instead, as I’d heard they were against it now even though they’d originally recommended it. They’re okay with the idea once they realise it would be for his feeding rather than his pancreatitis. Josh’s biopsy results have just come back from UCLH and he doesn’t have auto-immune pancreatitis, which on reflection, is a good thing as any treatment would involve steroids. The BMT doctors are in next to update us on how ‘The Italian Job’ is panning out. The donor is unwell so everything’s been postponed by a week or so, although Josh’s blood sample has already winged its way over to Italy. When the time is right we’ll fly Josh out there in a private plane for the infusion. They’re still investigating the bureaucracy involved before deciding whether he’ll be staying in Pavia or Milan. Depending on when we go and where we are, we may take Joseph with us and go as a family. Onto other matters and the team haven’t been able to track down the neurologist that came to see me yesterday. We joke that he might not even work here, but quite frankly nothing would surprise me about this place anymore. Josh’s teacher pops in with the football game he designed and tells me the boy next door loved playing it and has written Josh a thank you note. He’s going home tomorrow, but given the short conversation I had with his mother in the corridor last night, I suspect it’s not the good kind of going home. Josh watches last week’s football in bed and eats half a crusty role and a meatball before asking to go to sleep again around 8pm. As he settles down we have a long chat about how well he’s done, but how I know it won’t feel like that for him. He must wonder when on earth he’ll ever come home and we talk about how we all get through it by just thinking of the next day ahead and trying to enjoy it as much as we can. His pancreatitis and headaches mean he doesn’t get to do much of anything anymore and I explain that we’re close to hopefully stopping his pain. The trip to Italy is to try something to help his head which he knows isn’t quite right and that it makes him struggle and forget things sometimes and we talk about other plans the doctors will put in hand when we’re back to build up his immune system again. He doesn’t get upset at any point, but becomes quite emotional when I tell him how many people read about him every week on the blog and that he’s a real hero. The doctors have been talking to people all over the world about him to try and find the best way of making him better and we’ll get him home as soon as we can -we just don’t want him to come home before he’s ready and have to come straight back. He takes everything we discuss in his stride. He never really asks any questions and I thought it was important to fill him in at the moment, as he must really feel like he’s stuck in a loop here. When I tell him we’ll do anything and everything we can to make him happier while he’s in hospital his eyes light up and he asks if, at some point, we can buy him Pirates of the Caribbean Lego on PS3. He goes to sleep with a smile on his face when I say that I think we can manage that...
Friday 27th May
Josh had another good night overall, although he surprised both me and his nurse by sitting bolt upright at 10pm and asking what he could do. The answer was watch Dr Who together, after which he went straight back to sleep. It was a strange, unsettled sleep though as he’s started imagining sounds again, mostly music, which could be down to Fentaynl withdrawal. He even started singing along to a McFly song he thought was playing in his room at 3am. Let’s hope it’s just a blip and nothing to worry about. Claire and Joseph arrive at St Pancreas station at 10.27am and I meet them there so I can head off to Madam Tussauds straight away with Joseph. There are no queues outside, but a big one inside and we end up standing in line for longer than we’re walking around. It’s very expensive, a fact not helped by a sign outside that shows the price without VAT in big figures and how much you’ll actually pay in far smaller ones. Luckily I have a 2-for-1 Sun voucher with me. More than one actually, so I hand over the spare to a couple of extremely grateful middle aged American Ladies who guarded our spot in the queue when Joseph needed the toilet. We came here with Josh and Joseph a few years back and are only really here to see the Marvel comics section but still there’s a fair few things to distract us before we get there. The Marvel superhero movie in 4D is even better than we expected - the seats shake, blast air and water vapour out and punch you in the back. At one point Joseph is convinced his leg have been slashed by tiny robot creatures and amazed there’s no blood. He loves it, but is a bit of a grump afterwards until I cheer him up with another trip to Pizza Express. There’s just time to give Josh a bath when we get back to the ward before his friend comes to visit. Claire may well need one too tonight, as she accidentally tipped a bedpan full of poo over her feet and the floor. Joseph and I just make the last train home before rush hour, leaving Josh to play cards with his friend for the next couple of hours which he manages without getting a headache. He struggled to follow some of the games he used to excel at, but was like a different boy and very excitable when they moved onto his iPad and Tap Zoo. He remained on good form long after his friend had gone and sat and watched ‘So you think you can dance’ with Claire until 10pm.It really is all swings and roundabouts at the moment.
Saturday 28th May
The phone rings at 8am. It’s Claire and it’s not good news. Neither she nor Josh have slept as he’s hallucinating again. The sounds he heard the night before have been joined by visions and she hears him talking away to people who aren’t there all night. He’s imagining fairies flying round the room, pirate ships and unicorns. He’s seeing patterns on his arms and staring at them for hours – some he describes as ‘ cool’ others he’s not sure about. He doesn’t hear anything Claire says because he’s completely lost in his visions. He starts to see ants crawling up his arm then tries to catch ones he sees on Claire’s neck. And then the itching starts. His skin was looking good when I left, so it’s unlikely it’s his GVHD and sounds like some kind of neurological itching which just won’t quit, He scratches and scratches incessantly all night long, becoming more and more irritated as the skin becomes inflamed and starts to bruise and bleed. We’ve been here before. They tried Medazolam to calm him down, it’s a short-acting drug used for the treatment of acute seizures, severe insomnia and for inducing sedation and amnesia before medical procedures. I think it worked eventually, but by the time Claire called he was at it again and I could hear him nattering away in the background. He wants to know where me and Joseph are, then thinks I’ve arrived in the room and starts talking to me. He can’t remember that his friend came yesterday or what they did. Claire makes sure the doctor on duty sees him while he’s hallucinating, but there’s nothing they can do. Meanwhile Joseph and I are off to football. The rain holds off and he scores a good goal. There’s a dad’s match at the end of the session and I step up to play, not realising that most of the players are football coaches. I’d been led to believe it was just a bit of fun but names are called out and positions apparently worked out weeks ago. All the players even have nicknames like ‘Chopper’ and ‘ Ronaldo’. Just as I’m about to wander off, they realise they’re a man short and I’m commandeered. We’re on a full size pitch and it’s 25 minutes each way rather than the 10 minute kickabout on the kid’s pitch I’d expected. It’s serious stuff. I just about hold my own in defence marking someone twice my height and half my age. We’re winning at half time but lose two goals early in the second half. I’m just getting my second (or was it third ) wind when our goalkeeper is carried off with a suspected broken leg and the match comes to an abrupt halt. What a relief ! As I walk off, I discover Joseph wasn’t watching anyway and it was all his idea. The rest of the day is spent recovering. Joseph tries out the roller blades he got for his birthday and we fix a few of his new accessories to his bike. Claire calls again to say that she’s just stepped out for lunch as she had to escape the asylum. She left Josh playing Playstation with an imaginary friend and talking nonsense. All the televisions on the ward have just gone down again for the weekend and can’t be fixed as they work off a main server which is linked to a company in Ireland. This happens all the time and I’m sure it’s down to some dodgy deal struck with somebody on the board’s brother-in-law or something. This may well mean no Champions League final for Josh to watch, although it sounds like he wouldn’t know what was going on or who’s even playing at the moment. Feeding was due to start today but won’t as it’s one more thing to worry about and he’s still vomiting 2-3 times a day. There’s nothing we can do about what’s going on at the moment other than try and find ways to calm Josh down and ride it out. He’s conquered it once, he just has to do it all over again...
