Monday 6th June
What looked like being an early night was anything but. Having dried the towels I’d piled under the front door to keep the rain out, I completely forgot I hadn’t put them back. It was only when I went up to bed at midnight, after a late work call, that I noticed it had started raining heavily again. So much water had flooded into the porch that I could have relocated my fish in there. It took two hours to bail it out by which time I was cold, wet and miserable and ended up warming my feet on Joseph in bed. It was still pouring at 7am and I had to do it all over again, despite having the towels down this time. It’s an inset day today and we were supposedly off to Chessington, but even Joseph isn’t keen given the weather. Instead we have a real boy’s day at home, eating pizza, watching movies, doing Wii and play fighting until his swimming lesson at 5pm. Josh has suspected pancreatitis yet again and was screaming in pain at 2am. At least pain relief was sorted quickly this time as the doctor on duty knew him well. I say ‘suspected’ pancreatitis because his enzymes haven’t shot up and the BMT doctors think it may be stomach cramps due to his feed. Claire’s not convinced and neither is Josh. He has a surprisingly good day today, in spite of all this, and was awake for much of it - singing, reading, chatting and playing. Claire had a visit from a Professor regarding Josh’s gallbladder operation, but he appeared ill informed, hadn’t looked at any scans and Claire told him to speak with the BMT doctors rather than waste her time. By the time he catches up with them he’s obviously swotted up and they’re impressed, but we won’t know the outcome of the conversation until tomorrow. Ultimately the hospital needs to make a call on the operation rather than us. Josh’s blood still hasn’t gone off to Italy, but Claire’s been busy tracking down the various medical forms we’ll need for our proposed trip. She’s due at the passport office in Victoria on Wednesday which should be interesting as they’re sticklers for detail and, thanks to steroids, the top of Joshua’s head is within their size guidelines, but the rest of his face isn’t...
Tuesday 7th June
Every guy out there reading this blog will testify that when their other half asks them to do a quick job round the house, it will invariably take up at least half the day. Claire wants me to fit some gutter balls she ordered online into our gutter to stop leaves and moss clogging up the down pipes. It’s a two minute job unless the slates on your roof overhang your gutter, which they do, in which case it’s impossible. Undaunted, I spend a good hour cleaning all the debris out of the gutters while I’m up there, then drop tennis balls in to keep the leaves out. When I get to the front porch I give Claire’s butt a thorough examination and discover it’s blocked, which is why we keep getting flooded. After a little probing with a stick, a trickle of sludge comes out followed by a deluge and it’s all sorted. If only Josh’s sludge problem could be fixed so easily. The surgeon I saw last week drops in on Claire following yesterday’s meeting with BMT and now believes surgery should go ahead, although he can’t guarantee it will make a difference. They will operate before he goes to Italy and take a biopsy of his pancreas at the same time they remove his gallbladder, just in case it’s GVHD causing the inflammation which would be a real setback. Other news is that Josh was hyperactive last night and they had to give him Medazalam at 1am to calm him down. He’s started vomiting more often, which is concern as we really need to progress with his feed. The dieticians are considering keeping the rate at 65ml an hour but running it for 24 hours a day instead of 16 which sounds like a terrible idea. My day is filled with odd-jobs, most notably fixing our fence which has a few peepholes appearing in it where the wood’s either slipped or dropped. I manage to fit in a haircut before picking Joseph up and taking him to Taekwondo. He hasn’t been for a couple of weeks but isn’t rusty as he’s been beating me up regularly at home. A friend gives us home-made spaghetti bolognese as a thank you for bringing her son back from the class, but we have food that’s about to expire in the fridge that needs to be eaten so Claire will get to enjoy it with Joseph tomorrow instead of me. Claire calls to tell me the dieticians have agreed Josh needs time off his feed and reduced it by 4 hours which is a relief. Josh has been asleep most of the day and they’re checking his Ferritin level, as it can act as an inflammatory marker and help tell us how he’s really doing. Claire suggested they look at it a long, long time ago before his transplant and it was found to be severely lacking, but nothing was ever done to correct it. It will be interesting to see what his level is now, as it can cause fatigue if it’s too low. On that point, my own energy levels are running so low that I’m in bed by 9pm. The last time I was in my jim-jams while it was still light, I think I was probably Joseph’s age...
Wednesday 8th June
Claire calls me from the passport office just after 9am. It must be so difficult going back there, as the last time was to replace her lost passport the day before we flew out to Portugal. Darling Alex is very much on all our minds at the moment, and Claire was at his memorial garden this week, planting and pruning. The memories will no doubt come flooding back once we’re out in Italy and caring for Josh in a foreign hospital. Talk about facing your demons. I’m up at GOSH a little earlier than usual and bump into Claire on the way back from a run to Waitrose. We’ve caught up on most things before we step into Josh’s room to relieve the volunteer watching over him. The most startling news is that gastro came up earlier and told Claire they would halve his TPN and up his feed rate today with a view to having him completely off TPN by close of play Friday. As this makes no medical sense whatsoever and actually contradicts everything we’ve been told over the last 4 years, Claire assumes she’s misheard but checks Josh’s file for the sake of her sanity. Sure enough, it’s down there in black and white and the nurses have been instructed to follow the plan to the letter. When we question it again, chaos ensues and it’s only when another gastro doctor appears that we discover they’ve done a dramatic u-turn and are following Claire’s plan. Almost every time we question a medical decision, the doctors agree with us and change their diagnosis or plan. It’s scary, as I’d much prefer being told we’re wrong and why. In the end you’re left wondering what on earth would happen if you didn’t speak up. Claire leaves and Josh wakes up soon after. By the time his teacher arrives, I’ve got him up and into his wheelchair and put drops in his eyes for the ophthalmologist who’s due around 3pm. She finds nothing to worry about, which is always a relief. Josh tries a little physiotherapy soon after that, but there’s a headache brewing and he retires to bed screaming. Claire told me the new Pirates of the Caribbean movie was showing on the GOSH DVD channel today at 5pm, so I wake Josh just before it starts. He says he’s too tired, which is just as well as it turns out to be one of the old movies he’s seen umpteen times. Claire misread a poster she’d seen up in the hospital, but you can hardly blame her as they occasionally show Disney movies here at the same time they’re released at the cinema. The DVD channel is a strange beast as it could show the latest DVD releases every week as they hit the shops, but only shows movies once a fortnight and they’re usually ancient. The rest of the time it plays Radio Lollipop – the in-house radio show that nobody listens to. I’d love to know what the listening figures are, but my guess is slightly less than zero. Hospital radio is a relic from the days of Carry on Doctor, when it was the only source of entertainment available to patients other than having a thermometer shoved up their backsides by a friendly Matron. If the NHS are looking to make cuts, it’s the first place I’d start. While Josh sleeps on, we get a visit from an Italian doctor who is over here from Pavia to finalise the arrangements for our proposed trip and to give a presentation to a room full of GOSH bigwigs. She’s very articulate, regardless of the fact English isn’t her first language, and I get the chance to ask a few questions. I won’t bore you with the finer points, but the headlines are that Josh’s donor needs to have encountered the JC virus in order for the treatment to stand its best chance of working. This is more likely than it sounds as 70% of the world’s population have it, but unless your immune system is heavily compromised it’s unlikely to ever surface. You may remember this is why it’s almost exclusively only seen in HIV patients. The fact Josh has the virus in his blood as well as his brain may make it easier to monitor his progress. If all goes well and they get enough cells from the donor, they may give Josh two infusions a week apart as there’s no additional risk. She’s taking Josh’s blood sample back with her today but it’s likely to be another 14 days before we know if the treatment will go ahead as they need to test Josh’s cells as well as the donors to see if they expand when the virus specific lymphocytes are introduced into his system. All being well we will fly out there next month, although so much red tape has to be sorted first - not least permission and funding. I’m told by both our doctor and his Italian counterpart that they will not take no for an answer and I truly believe them. Josh wakes at 8pm and manages a few hours of doing things he wants to do without any sign of a headache. He deserves so much more than that.
Thursday 9th June
We’ve been thinking about Italy quite a bit over the last few weeks. We now know that Josh will be treated in Pavia rather than Milan, which raises a couple of issues as it’s not exactly a hub of activity for Joseph. It’s a University town with a medieval wall, a cathedral, a couple of ancient churches and an impressive monastery, but unless they’re Shaolin monks and teach the secrets of Kung-Fu, I don’t think Joseph will be too impressed. If we could find accommodation with a swimming pool for him, it would help pass the time but they appear few and far between. Claire popped into our local travel agents to see if they could help as they never seem to be terribly busy in there. Now we know why as the response she got was ‘Never heard of it. Can’t the hospital sort it out ?’ Josh pushed his green button several times last night, but I’m not sure why. When I ask him he’s a little vague and says he just felt uncomfortable. Let’s hope he hasn’t become a morphine addict. There’s the usual mix-up on his TPN which is currently running over 24 hours because it uses the same line as his pain relief. The nurse tries to take him off 7 hours early because she either hasn’t read the notes, or there aren’t any. The rest of the day is pretty much normal as days go here. Josh wakes briefly and manages to assist his teacher in doing experiments that test the dye in different coloured M &M’s. I persuade her to leave the pack behind so I can conduct my own experiments – namely making them disappear. One of the doctors stops me in the corridor to say she’s concerned Josh isn’t tolerating his feed well. It’s a dangerous assumption to make and based soley on a large vomit he had this morning. Given that he was vomiting long before he started on his feed it’s utter nonsense. If there’s more fluid in his stomach, more will come out when he’s sick. Common-sense is regrettably not a qualification you need to become a doctor. The surgeon who came to see me last week pops in to tell me they may be able to operate on Josh tomorrow, on the proviso that removing his gall bladder may not stop his pancreatitis. It’s a little sudden, but now the decision’s been made it’s better sooner than later. When Josh wakes up around 5pm, I casually let him know that he may be put to sleep at some point tomorrow and that they’re going to try and do something to stop his pancreatitis. When he wakes up he’ll have 4 small plasters on his abdomen and may be in a little bit of pain as there will be little cuts underneath. He looks a little shell-shocked, but he’s mostly worried about what time he has to stop drinking water. We watch ‘Streetdance’ together on DVD. He saw it at the cinema and is desperate to watch it again with me. It’s the kind of glossy, feel-good movie only the Americans can make, except it’s British. I really enjoy it, but not nearly as much I enjoy watching him dancing and singing along in bed with a big grin on his face. He insists on a dressing change before going to sleep but isn’t happy with the result as it covers half his nipple – which is fair enough. I have to peel the plaster back and cut a little section out around it, not for the first time. Once that’s done he’s asleep almost straight away with a satisfied grin on his face.
Friday 10th June
Today’s the day Josh says goodbye to his gallbladder. Let’s hope he doesn’t miss it too much. Basically the gallbladder stores about a cup of bile from the liver to help break down fats. Without a gallbladder you still produce the same amount of bile, you just don’t have a reservoir for it. It’s the anatomical equivalent of the screw you always have left over after assembling a flat-pack wardrobe from Ikea. It undoubtedly has a job, but if everything works fine without it, who cares ? Josh’s feed stopped at 2am and he’s on nil by mouth from 8am, which is a little harsh as he’s last on the list for surgery and may well not go under until late afternoon. He had an okay night but was still up 5-6 times on the commode. An anaesthetist pays me a visit to discuss the procedure. Josh will need pain relief afterwards so, as he’s on Fentanyl, we’ll keep him on that. A quick look online tells me everything and nothing about the pain he’ll get afterwards, with people describing it as ‘feeling like somebody’s standing on me for a week’ to experiencing none at all. The procedure is all done through keyhole surgery. Four small cuts are made in the abdomen which is then inflated using carbon dioxide gas to make it easier to see the internal organs on a monitor. A laparoscope (imagine a long thin telescope with a light and a camera lens on the tip) goes through one hole and specially adapted surgical instruments through the other - then, hey presto, no gallbladder and hopefully no more pain. I let Josh sleep as long as possible so he doesn’t miss not being able to drink. He wakes around 1pm and is understandably anxious about the operation. Who wouldn’t be ? Comforting him doesn’t really help, so we play Lego Pirates to keep his mind occupied as time ticks away. At 3pm we’re told it’s imminent and they bring a surgical gown into the room for Josh to slip on. I can see the colour drain from his face as panic creeps in. He’s normally pretty stoic about going into theatre, but having something removed is a different matter altogether and I can sense the difference. At 3.30pm a nurse appears to tell us that they’re running late and the operation won’t happen today. It’s like a stay of execution as far as Josh is concerned and his sigh of relief is so great, I swear it causes ripples on the Thames. The first thing he wants to do is drink some ice cold water to celebrate and I happily oblige. After that we finish the last level of his Lego game, although we still have characters to find and plenty more to explore. All in all it ends up being a really good afternoon, although I haven’t left the ward or eaten since yesterday lunchtime and Josh will have to go through everything all over again in a couple of weeks time. Halfway through watching the Britain’s Got Talent final on DVD, Josh gets his first headache of the day and wants to go to bed. Having watched it with him, I’m not surprised. It’s been a long, difficult day for Josh and he’s out for the count in seconds, although he wakes a few hours later around10pm for a cuddle and a sneaky look at the cheat codes for his game. Every time he’s up after that, all he talks about is playing as different characters in the morning. It must be so wonderful get that excited about something so simple, although I have to confess I can’t wait to play as Blackbeard. Aha, me hearties !
Saturday 11th June
Having racked my brains all night trying to think up a better plan for his pain relief and TPN, I think I’ve got one. When the pain team arrive we discuss it and put it into action. Basically we’re taking him off his green button during the day, when he rarely pushes, and putting him back on at night when he gets tummy pains. This allows him to have oral morph for his headaches, which tend to come when he’s more active. It also means his TPN and feed can go up together at 9pm, run simultaneously for 16 hours and then come down together the next day
at 1pm – making it much easier for us to keep tabs on what’s going on and hopefully stopping him from getting too many calories which is what’s been happening. You’ve probably nodded off reading all that,
but it’s documented for my benefit rather than yours, so tough. While we’re on the subject of medical stuff, I chased up Josh’s ferritin results today and got a bit of a shock. Ferritin is a protein that stores iron and releases it in a controlled fashion. His reading should range between 22-33. The last time he was checked was two years ago and it was 3. This time the reading is 2,731 ! A quick Google of ‘ High ferratin level symptoms’ tells me it can cause pain in the joints (check), lethargy (check), fatigue (check) and pain in the abdomen ( double check). Whether we’ve hit on something it’s impossible to say, but it’s certainly worth investigating further next week. Josh spends the morning asleep in between a couple of large vomits. When he gets up at noon though, he’s on good form and we have a cracking afternoon – probably the best in months. Having looked up the cheat codes for his Pirates game, we have great fun collecting characters and discovering new places to swash and buckle. I can’t remember seeing him quite this happy and animated in a long, long time. He eats half a crusty roll and shows no sign of a headache, even when he flags around 5pm and I start reading to him in bed. He nods off during a particularly long winded chapter of his book and only wakes for water, the toilet and to remove the electrode and lead off his finger because he’s attached to more than enough wires and, as it isn’t glowing, he knows it’s not actually doing anything.
Sunday 12th June
I start the day with a brutal tidy up of our room. Down come the last remaining Easter cards and last year’s birthday cards from his walls. Even the ‘Get Well Soon’ cards that drop off the white board and attack me in the middle of the night aren’t safe, as they seem smugly ironic now he’s been in here nearly a year. Josh is up and about just before Claire and Joseph arrive. It’s only been 4 days, but Claire notices a big change in him as far as his weight is concerned and thinks he looks more himself than he has for nearly 18 months. While Claire has a cat nap on the bed, I set the boys up on Playstation and they giggle away as they go off in search of a big booty together – no, not Jennifer Lopez. They appear to have as much fun as they’ve had in ages. I slip out to move the car before we’re clamped and pop into The People’s Supermarket to buy a paper. It’s the only store I’ve ever been in where the staff outnumber the customers by 5-1 and it takes longer to weigh a courgette than it does to grow one. If this is the future of supermarkets, I’ll stick with the big four. When I get back, we try to give Josh a bath but he’s not keen and we have to make do with a thorough scrub of all his bits and a hair wash. Joseph and I stay until 6.30pm before heading off just as Josh sits down with his mum to watch a movie. Claire’s news from home was that the goalkeeper injured during my sporting comeback a couple of weeks ago did indeed break his leg and faces 12 weeks in plaster and a long period of rehabilitation. The local travel agency with an attitude problem finally got off their lardy package holiday butts and came back to us with a couple of options for Pavia, both of which we’d found ourselves anyway, but at least it’s a start. Joseph bought a brand new bike with his birthday money that’s almost as big as Claire’s but thankfully not as pink. It’ll be nice to be home for a couple of days and I’m praying for some sunshine. Quite what next week will bring, I have no idea. Key things to chase up are Josh’s ferritin levels and exactly where the hospital is in Pavia so we can start making concrete plans. I’ve been given a preliminary date of Monday 20th June for Josh’s gallbladder operation. It’s only a week away but, as regular readers know, a lot can happen in a week here at GOSH so we’ll just have to wait and see....
