Friday 7th January
It’s another cold, wet miserable day with the weather deliberating between snow, sleet or rain. It eventually decides on a torrential downpour. The Christmas decorations at Alex’s garden need taking down and I drive over to Beckenham after dropping Joseph at school. Almost by divine intervention, the rain stops just as I get out of the car. Emotionally the only way to deal with dressing or undressing Alex’s garden is to completely distance yourself from where you are and what you’re doing. It only ever really hits me that it’s Alex’s final resting place just as I’m about to leave and I always find myself struggling to breath, as if I’ve been punched in the solar plexus. Sadness turns to anger when I realise I’m blocked in the car park. There’s a funeral on, but it doesn’t excuse the row of cars parked right down the middle of the car park so nobody can get in or out. Rather than wait an hour or so for the service to finish I manage to maneuver my way out by inching forwards and backwards, inches at a time, over and over again. It takes me 10 minutes and my deodorant takes a pounding but the end result is I’m free and off to London. Or rather I would be off to London if I could find it. With no obvious road signs to follow I waste 20 minutes driving round and round Peckham and Dulwich like a Jumbo jet circling over Heathrow waiting for a snow-free runway. Josh is dressed and running on the spot when I finally arrive at the hospital. He’s looking good and desperate to show me the new Landmarks board he’s found for Monopoly Street. Before that, we open a few more of his Christmas presents including a Top Trump Tournament game that makes great use of all your old Top Trump sets and includes 6 new Star Wars packs. All three of us play and it’ll be even better with Joseph on Sunday. Claire was originally going to hang around for ward round but she leaves once we’re settled in front of the PS3, which is just as well as the doctors don’t come round until nearly 4pm. That’s partly my fault as I went for lunch when his teacher arrived at 1.30pm and may have missed my slot. Josh had a good session. It’s a different teacher at the moment and she does basic sign language as she speaks which really helps. Josh and I play Monopoly Street again. He’s a burglar this time and when he lands on the London Space, he tells me he’s going to steal Great Ormond Street so he can escape and go home. His good humour is still evident when the doctors propose a number of medical changes on their round. ‘You’d better write all this down Dad, as you’ll never remember it all,’ he tells me in front of them. He may well be right, but I’m trying to make sense of it first. They’re proposing a new cream for his skin which is more likely to suppress his immune system, but may work harder. It’s only when I ask them to explain the switch that they tell me they’re hoping to reduce his ciclosporin if it works. It still doesn’t explain why they want me to cover the top half of his body with the new cream in the morning and the bottom half with the original and then do the opposite in the afternoon. Surely it would be better to be consistent and make a comparison to see which works best ? In the end we agree to do his arms and legs with the new, stronger cream and his torso with the old one. That way we’ll reduce his steroid intake and learn something at the same time. The next thing the doctor brings up is Tadworth. Apparently there’s a slot there in a couple of weeks and they’re looking to move him. It’s a bit of a shock, but if he continues to improve it’s certainly an option. They will look to switch the majority of his drugs to oral which sounds fine as long as they keep the Aciclovir as an IV as it’s protecting his eye. They don’t appear to have thought about this, but there is another drug which should do the same job but is better absorbed through his stomach. I ask them to check with ophthalmology before doing this as they got it terribly wrong last time and we can’t afford another slip-up. The last revelation is that he’s free to start eating as long as he doesn’t go mad. I ask what they mean by that and again it hasn’t been thought through, although the suggestion we start with rice and chicken rather than elemental milk feed this time around sounds good. The news comes too late for me to organise keys for the children’s trust house kitchen, so Josh will have to wait another day or so before we can start. You get the feeling that they’re rushing everything to get him out of here and we’ll have to be very careful nothing is overlooked in the process. Josh opts out of a bath as he’s worried about pain and itching. As the new cream still hasn’t arrived, I stick with the old one all over instead. He plays DJ with his iPad for the next hour blasting out his favourite songs, then watches TV with me until 9pm. He has a good settled night which means I do too.
Saturday 8th January
So settled that I don’t wake up until 9.30am. The nurse has left oral medicines for me to give to Josh along with a note. We agreed this plan a few days ago when he confessed that he didn’t like giving them. Previously he’d simply leave them on the side and I’d have no idea why they were there or when they were for. A few of the nurses do this and I’ve had a few words to say about it as it’s very bad practice. Claire calls from the gym. She enjoyed a rare night out and followed it up with an aerobic class this morning with Joseph still at his Auntie’s house. Her back’s grumbling as it’s been a while since she’s had a chance to exercise. She’s as concerned as I am about the speed with which they’re looking to discharge Josh and thinks it may be Doctor Ego hurrying things along so he can show everyone he’s solved Josh’s case and looks like a hero. I hope she’s wrong, but suspect she’s not. She raises a couple of other issues they haven’t thought about and decides to write a thorough list of what needs to be done over the coming weeks. Josh wakes late but is full of beans – not literally as we haven’t started feeding him yet. He jogs on the spot while I change his bed, then I get him dressed and into his wheelchair and we head off to the playroom. Luckily we pack our own fun as there are no games, toys or books on display as it’s closed. Everything was cleared away for the Christmas buffet and nothing’s been put back. We sit in there anyway and do a 100 piece Doctor Who jigsaw, then play ‘Beat the Parents’ – a trivia board game which is kids vs grown-us. No prizes for guessing who wins. One of the more interesting facts we learn is that Koalas sleep for up to 16 hours a day, which is what Josh is averaging at the moment. Maybe we should be try feeding him Eucalyptus leaves rather than rice. Josh’s favourite nurse gives me some respite and I trot off for lunch, blissfully unaware that it’s nearly 4pm until I sit down in a Chinese restaurant where they wait for me to take my coat off and sit down with a menu before telling me they’ve stopped serving until 6pm. I wander London’s streets and settle for Chicken Teriyaki closer to home. It’s not great but fills a space. The Lion Bar McFlurry I eat on the way back is far more satisfying. Josh is sitting up in bed watching Star Wars when I return so we delay his bath until it’s finished. Josh is really anxious given what happened last time, but all goes well with no itching or rash afterwards. Hopefully he’ll forgive me when he reads this, but I put water down his line before his bath and conned him into thinking it was Piriton and Paracetamol to calm him down. We end up watching the JLS show that was on back in November which he seems to enjoy and he’s still singing their hits long after lights out. The ward is alive with the sound of music.
Sunday 9th January
Claire and Joseph arrive after attending an early mass. I manage to wake Josh in advance and by the time they walk in he’s up and dressed and his skin’s been creamed and buffed. We head for the playroom and while we three boys play Top Trumps, Claire pops down to the canteen and brings up roast chicken dinners for us all. Josh has rice but only manages a couple of spoonfuls before he spits it out, saying he doesn’t feel ready to eat yet. It will be a long, difficult process getting him eating again after so long. For a couple of hours it’s as close to family life as we’ve had for many, many months although Josh’s hearing is really suffering. We have to say everything so many times and he invariably gives up and just says 'it doesn’t matter’ when he can’t hear what we’re saying. I remember the feeling well. It’s depressing and isolating. Joseph’s at a school party in Orpington this afternoon. We’re late heading off and the traffic’s not great but arrive by the skin of our teeth having picked up one of Joseph’s friends up on the way. It’s fancy dress and the sports hall is packed with princesses and superheroes. I drop off Peter from Narnia and a sheriff and head home. It’s a crisp, sunny day and with an hour of daylight left I set to work on sweeping the front path of leaves and sludge. By the time another mum drops them home it’s gone 6pm. Joseph tells me all about the party and doesn’t stop talking until sleep finally envelops him. He’s never less than entertaining, but sometimes my hearing aid needs a rest.
Monday 10th January
With Joseph packed off to school with his wellies for Forest Day, I actually have a few hours of free time. It’s cold and miserable outside so I turn my attention indoors and sorting out Joseph’s toy cupboards. News from hospital is good in that Josh is awake more, but unclear on where we’re going next. Claire had a visit from the gastro consultant who was surprised he’d been told he could eat. He doesn’t have a major problem with it, but it does spread doubt on BMT’s claim that they are in almost daily contact with all the other departments regarding every aspect of Josh’s health. The consultant’s wife is a big cheese in immunology and she will be sending bloods off to Europe for comparisons to be made with the only other family they know of that would appear to have a similar hereditary problem. At the same time, BMT are sending bloods off to Vienna to be analysed by an expert on the JC virus to get some idea of whether Josh’s immune system is able to recognize and fight it or not. We’re assuming it can because he’s defeated it once, but they want to be absolutely sure. It’s almost impossible to believe we could be out of here in a couple of weeks. There’s been no decision on funding as far as we’re aware and nobody seems to be concerned that Josh still has norovirus and it’s highly unlikely they’ll take him with that. His Hickman line is blocked again, so his TPN and IV’s are stacking up. He’ll need another line-o-gram tomorrow and, despite neurology not thinking it necessary, there’s an MRI planned for next week which will mean Josh going under general anaesthetic yet again. His skin is still improving, although the Bio mousse prescribed for his scalp has failed to appear. Claire’s started using coconut oil in the meantime which leaves him looking like an Italian waiter but appears to work. Joseph has swimming after school and has moved up another grade. He’s baffled as to why he’s can’t snorkel during his lesson, but reluctantly agrees to keep his flippers and mask back until play time at the end. His swimming above the water is improving all the time but is still several thousand leagues behind his underwater exploits. It’s early morning before I finally crawl into bed beside him and he stretches out an arm in his sleep to cuddle me.
Tuesday 11th January
There’s no spring in my step at the moment. Six months is a long time to live in limbo and it’s beginning to take its toll on all of us. I’ve only just written up the last few days for the blog as it’s becoming increasingly difficult to stay on top of things, both here and at home. It’s hard to see an end to what’s happening which means it’s hard to keep the momentum going and appear upbeat around the boys all the time. I arrive at GOSH around 11.15pm having walked from King’s Cross via Waitrose to buy Black Farmer Gluten Free sausages for Josh’s lunch. He’s sitting in a chair bashing away at a Bruce Lee game on his iPad when I walk in and looking good. This is no doubt due to the coconut oil on his scalp in addition to the olive oil on his face and 3 assorted creams on his body. It’s a miracle he doesn’t keep sliding off his chair. Josh is chatty and articulate and has great fun filling in a ‘Madlibs’ book his American cousin sent him for Christmas which involves coming up with nouns and adjectives which are then included randomly into a story, making it very silly indeed. Claire and I catch up while he giggles away in the background. Our main concern at the moment is that his Hickman line remains blocked. Claire tries to hang on for ward round, but as usual they visit us last which is tricky as it always coincides with school. When his teacher arrives I rush back to the house to cook sausage and chips for him. He’s learning about natural habitats and I tell him Great Ormond Street is his. He manages a couple of mouthfuls of food but no more than that. Audiology request our company at 3pm but nobody up here can find his medical notes. As luck would have it, they have a record of his last hearing test down there so we get away with it. The upshot of the tests are that his hearing has changed a little but is relatively stable and they adjust his hearing aids accordingly. We’re either seeing consultants or having tests for the next two hours and nearly miss the delayed ward round. The doctors are still pushing for Tadworth in a couple of weeks and are continuing to cut down on his medicines. His anti-sickness has been stopped along with an anti-fungal and his ciclosporin will be reduced as his skin is looking better. This will hopefully allow his immune system to pick up. Claire’s compiled a list of questions regarding our move to Tadworth but the vast majority of them are about practicalities and the doctors won’t be able to answer them. I do bring up the latest flu outbreak though, which he will obviously be particularly susceptible to at Tadworth, where there will be less stringent rules on hand washing and he’ll mix with far more people. They feel he could be vaccinated although there’s no guarantee he’ll build up immunity. We will need to return to GOSH once a week to see the ophthalmologists and doctors here for general checks and certain medicines they are not licensed or qualified to give at Tadworth. Things are beginning to gain momentum. The mousse for his scalp finally arrives but I decide not to use it until I’ve read up on the side-effects, just in case anything’s been overlooked. Josh settles down around 7pm to watch Clash of the Titans which is right up his street. An ancient Greek city is under threat and only Persius, son of Zeus, can save them. Unfortunately the city in question is Argos and every time they talk about it going under, I keep wondering how many jobs will be lost and whether it will disappear as quickly as Woolworths did. While Hell Is unleashed on screen, a nurse arrives with his oral meds which I say I’ll administer. When I pull up his t-shirt, the line to his peg looks blocked and is full of black sludge. I can’t get anything down it or flush it. I call for a nurse who also struggles. Neither of us have a clue what’s blocking it as he hasn’t had any orals all day. While they phone the gastro ward to try and get a professional un-blocker up here, I have a fiddle with a few different sized syringes and a bottle of sterilized water. After 20 minutes of gentle pushing and pulling and squeezing his tube, it’s cleared. An educated guess is that one of the nurses aspirated him last night and forgot to flush, so bile and blood congealed and blocked the tube. I guess we’ll never know for sure, but we’ll have to keep an eye on it as most of his IV’s have been converted to orals now and if this line goes as well, we’ll need to put an NG tube down his nose which will bring tears to both his eyes and mine.
Wednesday 12th January
Another good night. I sleep until 8am and then read up on the BettaMousse foam for his hair. There’s a worrying paragraph in the small print that says it can make eye infections caused by herpes worse. Given that herpes is the same virus as chicken pox, which is what rendered his right eye blind, I decide to hold off until I’ve spoken with ophthalmology. After physio, Josh and I play a bit of Playstation until his music teacher arrives. I grab a bit of fresh air and return to find Josh bashing out a haunting tune on the xylophone while his teacher accompanies him on keyboards. Britain’s Got Talent here we come. She’s noticed a huge difference in him since Christmas on every level and he is improving daily. Ophthalmology call at 1pm to see if it’s okay to pop up in 5 minutes. His teacher’s due at 1.30pm so it sounds perfect. They still haven’t surfaced by the time she arrives, so instead of going out, I have to sit in the parent’s room and wait. It’s 2pm before they come up and carry out a few eyesight tests after which I put his drops in. They promise to come back within the hour, which they do. He has no haemorrhages at all at the moment which is great news. I ask her about his scalp mousse and we agree not to give it unless absolutely necessary, which it isn’t. A volunteer had agreed to sit with Josh at 3pm but doesn’t turn up till after half past. She appreciates she’s late and offers to still do an hour. I explain Monopoly Streets and she and Josh look happy playing when I leave. An hour gives me time to head off down Oxford Street to my least favourite shop – WH Smiths. I have 4 vouchers for free Premier League footballs stickers and an album. I’m told they have to be done as separate transactions so I will have to go to the back of the queue after each voucher has been scanned. Once I’ve stopped laughing and realise he’s being serious I question the logic of it and they eventually relent. He doesn’t give me an album though and when I point this out he tells me I didn’t have a voucher for one. It’s only when he reluctantly opens the till up that he realises he’s wrong. Far from apologising, he shakes his head as if I’m in the wrong and thrusts the album into my hand. If only the Kraken in Clash of the Titans had destroyed this appallingly run high street shop rather than poor old Argos. Josh and the volunteer are still engrosses when I return. She loves the game and wants to come back and sit with Josh next Wednesday, which is fine by me and a nice way for her to earn a living – although being a volunteer she doesn’t actually earn a penny which is a shame. After a quicker than usual bath, as there’s a nurse waiting to try and fix his Hickman line, Josh puts his football stickers in his book. Like everything else they’re cashing in on 3D hysteria which is a real shame as it means half the stickers are either a blurry mess without the glasses or simply red with them - not the pop group obviously. His line remains a problem and he may well need a new one in the near future which sounds simple but requires general anesthetic and complex surgery. If you’re an avid reader of the blog you’ll know all about, if you’re a new arrival just Google it. After a dressing change we watch the weekend’s FA cup games. Josh is doing so well at the moment. His personality is back in spades and every minute spent with him is a real joy. It’s hard work though as whoever is here looking after him gets almost no time whatsoever to themselves anymore – not even at night when he’s often still chattering away as midnight approaches. It’s a small price to pay to have him back firing on all cylinders but a little more sleep wouldn’t go amiss…
Thursday 13th January
Only 13 days into the New Year and I’m off on a hot date. Okay, it’s lunch rather than a night out and it’s with my wife, but hey, I’m excited anyway. With a friend picking Joseph up after school and Josh’s teacher promising to come at 1.15pm on the dot we’ll have at least an hour together. Claire wants to talk about our finances, so it might not technically count as a date – more a lunchtime financial meeting - but I haven’t even had one of those since I ran an ad agency so I’m still excited. Josh needs to be woken for a finger prick to measure his ciclosporin levels around 10am but is violently sick afterwards. As per normal, he knows it’s coming and manages to get most of it on the floor rather than in the bed which makes the mopping up far easier. He’s reluctant to do much physio, which I think is reasonable given that he’s just thrown up. By the time Claire arrives I’ve picked up the week’s luncheon vouchers and Josh has been creamed up and is sitting in his wheelchair. I’ve organized for a volunteer he knows and likes to sit in with him until his teacher arrives and Claire and I head off to Giraffe for steak and chips with lashings of garlic butter. We’re out for just over an hour and for a little while it feels like we haven’t got a care in the world. As time goes by, we end up talking about the future and reality hits home, but it’s only a minor blip on the afternoon and we head back to the hospital refreshed and feeling nicely full. More news on Tadworth awaits us as we walk through the doors, most notably that we now have funding for 12 weeks in place and that they are sending 7 nurses over to GOSH next week to work alongside the staff here and learn more about Joshua and his medical needs. It’s a great idea and shows a real commitment on their part. At the end of the week the head nurse will talk through any questions we might have about how it’s going to work. Josh isn’t drinking much at the moment which is why I asked for his diarretic be looked at again last night, as it’s probably responsible for his deafness and he may not need it.They agree not to give it until they have a fuller picture of his fluid balance. It’s one more example of how habitual medicines can become and how important it is to constantly reassess what patients are on and whether they should be taken off anything or not. Josh is clinically and neurologically as good as he’s been since June, so the timing of Tadworth couldn’t be better. Josh is understandably a little nervous, but he’s not alone in that none of us have any idea quite how the next 3 months will pan out. All we know is that it’s the right step to take and it would appear to be the right time too. I’m home around 5pm and pick Joseph up an hour or so later after unpacking. There’s a little surprise waiting for him at home. A new magazine part-work has just come out about bugs. We won’t be collecting them but the first one is only 99p and comes with a real-life scorpion encased in plastic resin. He’s very excited and we read all about it in bed. We’re taught to say our prayers last thing at night, and as I lie here typing away next to Joseph, I can’t think of a better time to mention the special mass that a fellow parishioner requested on our behalf at St James’ this week. Joshua’s plight was referenced many times and even Joseph had a special mention. There was a piece of music dedicated to the family and a few tears were shed. I’m sorry neither Josh nor I were there to see it, but Claire and Joseph were and we would all like to say a big thank you to everyone for thinking of us. Let’s hope our prayers are answered and things continue to look up for Josh. He deserves it.
