Sunday 27th March
Joseph and I are up at Great Ormond Street before midday as usual. The road’s closed off again with building work in progress. There’s a tow truck parked in the middle of the road belonging to a contractor called Andy Long. It has A. Long Recovery written on the side which seems so apt to our situation that I take a photo ( see left). The sun comes out in the afternoon and we all head to the park with a football. Josh stands up with support from us and takes a few shots at Joseph, but soon gets tired and retires to the sidelines. He tells Claire he loves watching Joseph and me play as Joseph’s come on so much, but deep down it must be so heartbreaking for him. He asks if he’ll ever be able to run around and kick a ball again and, of course, the answer we give him is yes, because it’s what we all have to believe. He goes to sleep for an hour when we get back and I nod off too, lying on the bed with the sun streaming through the window. The rest of the afternoon flies by with the extra hour of daylight making a real difference emotionally and giving us both a lift. Once it’s dark, Josh and I fast forward through the best of Comic Relief - an hour long show that takes us less than10 minutes to view. Well done to everyone involved on raising so much money, but I’d happily donate far more if they all promised to stay off our screens for a couple of years. Sandwiched between Lorraine Kelly’s blistered feet and Graham Norton snogging Davina McCall is a short film about helping blind African children to see for just £5. Josh looks upset and starts to say something then just puts his hand on my arm and tells me he’s fine. In more ways than it’s possible to measure, he sure is...
Monday 28th March
Josh starts the day with a croissant, and what a busy day it proves to be. After completing a couple of grandpa’s sticker books and doing English grammar together, the Gastro department pay us a visit. I think it may have been the whole department as there were at least 8 of them. As usual, what we’re told is very considered and extremely clear. Josh has a date for his MRCP, but it’s not until 28th April. This means it’s highly unlikely we’ll out of here before June, making it close to a year since we were all together under one roof. A long recovery indeed. They confirm he’s leaking albumin through his wee, but they don’t know why. They ask about his eating habits and I bring out the Papyrus he made that begs for cheese in hieroglyphics. They’re impressed enough to let him have low fat cheese in moderation. A big thank you to Josh’s teacher and the pharaohs for that one. The BMT doctor’s next and I have a number of tricky questions for her which she answers as well as she can. No, they still don’t know what the fluid is around his heart or have any idea why it’s there. No, there aren’t any more theories as to why he gets pancreatitis, so if his scan doesn’t reveal gall stones we’ll be back to square one. No, we don’t know why his bloods drop so often and his white cells have never really come back, we just have to wait and see what happens in the next few weeks now he’s had his bone marrow top-up. Yes, we could stop his diarretic as it’s not doing anything to help his heart and won’t get rid of the excess fluid in his hands, feet and face until his albumin problem is fixed. Her feeling is that he’s leaking albumin because of irreparable damage to his kidneys due to drugs and that it will be a problem for the rest of his life. It’s not what we want to hear, but I’m glad she told us and it is just an opinion. She promises to get a second opinion from the renal team today. While Josh makes an Egyptian house out of modelling clay with his teacher, I venture out in search of low fat cheese. I trawl 3 supermarkets but can’t find anything lower than the 30% less fat Waitrose cheddar we have in the fridge. He has a gym session at 3pm followed by a small bowl of cheese, which he’s very happy about. After all that hard work he’s exhausted and needs a nap. The BMT doctor returns to say that the renal team aren’t worried about kidney damage, as the amount of albumin in his urine is so small. We await stool sample results. I’m told it must be leaking from his gut, but it wouldn’t surprise me if that’s not the culprit either and it’s just another one of Josh’s mysteries. He perks up again after his sleep and we have a good evening watching Space Jam and making up silly names for new Harry Potter characters as we lie in our beds with the lights off, giggling away like two big kids on a sleepover.
Tuesday 29th March
Today is all about our meeting with the new paediatricians joining GOSH to help oil the wheels of communication between departments and improve patient care. They’re not quite troubleshooters, but I can’t help but think of them as the hospital equivalent of ‘The A team’ - but without Mr T obviously. Josh is up at 9am and kicks off his day with a new procedure which is designed to tell us exactly how fast his kidneys are functioning. A tiny amount of dye is pushed down his Hickman line and bloods taken regularly over 6 hours to see how quickly the dye disappears from his system. It’s a tricky calculation and it could be weeks before the results are in. On top of Josh’s usual smorgasbord of IV and oral drugs, he had platelets and albumin last night and is due another blood transfusion and some immunoglobulin today. Not sure if I’ve mentioned Immunoglobulin before, but it’s easier to explain than it is to say or spell. Basically it’s a protein produced by the blood that attaches itself to foreign substances, like bacteria, and helps destroy them. The intravenous version Josh receives is extracted from over a thousand blood donors. He’s needed it regularly for a long time now and currently has it every 3 weeks. Josh wakes just before Claire arrives and plays FIFA during ward round. There’s little new to report, although his HHV6 levels have gone up since they treated it rather than come down - which suggests it’s doing nothing in his blood, bone marrow or brain other than just sitting there. It’s no surprise, but disappointing nevertheless as they’d originally thought it was stifling his immune system at the very least. We will just have to hope his new stem cells start to kick in pretty soon. Our trouble shooter meeting takes place in the parent’s room while Josh is with his teacher and it goes well, in so far as it goes. There’s so much we want to say in terms of how departments communicate and where the shortfalls are that it’s difficult to know where to start. Ultimately the team are looking to justify a role for themselves at the hospital, so we try to tailor our answers towards that. GOSH would definitely benefit from having general paediatricians watching over patients, but it’s difficult to say at what stage they’d be best involved. As usual, I’m in awe of Claire’s memory and her ability to articulate Josh’s history. I’m truly not worthy. The team vow to talk to us again. Let’s hope they do, as there’s so much to be learnt from Josh’s case. He’s asleep again when we return to the room and I leave to pick Joseph up from a friend’s house in time for Taekwondo. You probably know his weekly schedule better than I do now. Once he’s home and in bed Claire and I catch up, but there’s nothing new and we’re both exhausted, so it’s a short conversation.
Wednesday 30th March
It’s a productive day at home on both the domestic and work front. Joseph’s on great form after school. At his request I’ve lowered the dart board in the cellar to accommodate his lack of height and we play a couple of games. He’s a natural - all that’s missing is a pint glass in his hand and a beer gut. Josh is asleep by 7pm but has had a good day. Our regular ophthalmologist is back and pleased with his progress. His good eye has improved slightly in terms of long sightedness since he was last tested. His feet remain huge and his platelets have dropped alarmingly in just a couple of days, so he’s covered in bruises again. It looks like we were right not to let Josh mix with the other children on the ward, as one of them has a virus and is confined to their room again. The ward’s become a little slack in terms of rules and regulations in recent months and far too many visitors have been traipsing in and out. Josh has been neutropenic for much of his stay here, but because he’s always so bright and cheerful I think people forget just how vulnerable he is sometimes...
Thursday 31st March
Joseph wakes up convinced it’s April 1st and, as far as I’m aware, he’s right. It’s only when I buy a newspaper after dropping him at school that I realise it’s still March. This is a little unfortunate as he ran into the classroom today threatening to hide under his desk and jump out in front of his teacher shouting ‘April Fool! Let’s hope it slipped his mind. Up at GOSH, Josh is still swelling up as the pictures of his feet and hands opposite will testify. Claire and I only have time for the briefest of handovers but I catch up with one of the doctors later in the afternoon. Gastro want to scope him at the first available opportunity to see what’s happening in his gut and whether it explains why he’s losing albumin. His blood pressure is up, but it appears they stopped all his hyper-tension drugs two weeks ago, which is news to me. Finally, they want him to wear a wristband after 9 months of having one attached to his bed. I’d rather he didn’t, even though it is protocol, as I think it’s just one more irritant but will bow to their wishes if he does. After a prolonged lunch break, I take Josh up to the gym where he tries his podgy, swollen hand at hockey before bathtime. He wants pizza, so I pop one in the oven back at the flat then rush through the streets with it on a plate wrapped in a plastic bag. It’s a mini one and Josh only manages a quarter of it, but he looks like he’s enjoying every mouthful. He’s asleep by 9pm but I have to stay up to until past midnight to take yet another zombie dish out of the oven.
Friday 1st April
The most exciting news of the day is that the doctors feel Josh has spent long enough here at Great Ormond Street and can go home tomorrow. There will be a gold-plated, chauffeur-driven limo turning up at 9am and Justin Beiber will perform a concert at our house tonight to celebrate his homecoming. Ah yes, it’s April Fool’s Day and I can’t help feeling there’s more chance of the second sentence I’ve just written happening than the first. It’s a day of power naps for Josh, the first starting around 11.30am, just two hours after he woke up. There’s no school today for some reason and the play specialist who promised to come in the afternoon is also persona non grata. It’s a real pain as it means I spend the whole day waiting around for people who never appear and don’t get to leave the room. Josh is fine when he wakes, but it’s all so relative. He needs platelets again today and remains far less independent than the 4-5 year olds on the ward due to diarrhoea and immobility. He manages to eat one and a half croissants over the course of the day though and is on good form. I’m not at my best, having lain awake for most of the night thinking about a brief I’m working on. It’s worth the effort as I eventually come up with an idea I like which I send off to the agency in the morning. Josh plays a little hockey in the gym during physio, but he really is severely disabled and wouldn’t be able to climb even one step at home if he was living there. He does attempt a step-up during the session, but his back hurts and it ends in tears. Ward round suggests we can start thinking about Tadworth again towards the end of the month, although that’s dependent on us reducing his blood products to one a week. Given that his current average is 4-6, we’re not holding our breath. Everything will depend on how he responds to last week’s bone marrow top up. Josh drifts off again late afternoon and wakes around 7pm to watch TV with me. Claire’s entertaining tonight, hosting a leaving party for one of the mums from school. My guesstimate of 6 people attending is wildly off the mark as there’s more than twice that number coming round. I don’t know how she does it all and still manages to look so gorgeous.
Saturday 2nd April
The new 3DS arrived this week and there have already been numerous cases of children suffering from headaches and nausea because the 3D effect tricks their eyes. Nintendo have counteracted this with scientists claiming it alerts parents to any possible eye defects their children might have. Both stories are media hyperbole, but where does that leave us, the consumer ? As a kid, I remember reading a story about Martians taking over our planet by putting secret mind weapons into children’s toys. Suddenly it doesn’t sound so far fetched. The powers that be supposedly ‘protect’ our children by outlawing conkers and competitive sports then let something like this through because of the huge investment behind it. It’s crazy, surely ? Am I just getting on my soapbox because Josh won’t be able to use one, or am I just getting old ? Today was wonderfully uneventful here at HospitalWorld – the world’s dullest theme park. Josh had another albumin infusion, although there was some confusion over whether he was meant to or not. His weight is still up and down, with the emphasis on up. I had to weigh him three times today, just so we could stay on top of his fluid balance. Two key highlights of today. The first was watching Man Utd play West Ham ( who I really hope stay up, Kev ).It looked all over after 20 minutes with the Hammers 2-0 up, but Josh’s face when they came back to win 4-2 was a picture. We missed Rooney’s shocking 4-letter rant at the cameras as we’re both deaf. The second highlight was stopping at a food stall on my way back from Waitrose with Josh’s reduced fat croissants and picking up a Chorizo, melted cheese, roasted peppers and rocket sandwich for myself. Yummy. Claire’s evening on Friday was a success by all accounts, although Joseph woke up just as everyone left and ended up helping Claire clear up at 2am ! Maybe we should consider hiring him out for parties as a spare pair of hands...
Sunday 3rd April
It’s another glorious sunny morning and on my way to get a paper I bump into our favourite doctor, who’s been absent from the ward for 2 months doing research. He’s back in two weeks so we’ll definitely see him before we go. He initiates a long, interesting chat about Josh and is very complimentary about us as a family, telling me how everyone’s amazed we can still smile and be civil after 9 months on the ward. He’s astonished we don’t physically attack the doctors when they walk into the room. I point out there’s still time and it could happen. Despite repeated ‘ I’d better let you get on’s,’ we’re still talking 20 minutes later which is a little worrying as I’ve got two zombie dishes in the oven. Fortunately only one’s burnt when I get back up to the room. How sad is my life ? Josh has a lie-in so he can save his energy for when Joseph arrives. It’s Mother’s Day, of course, and Josh and I went out yesterday to buy a couple of small prezzies. I made a card last week and Joseph signed it from Josh as well for reasons best known only to himself. Claire opens them when she arrives, then we all head off to the Museum of London. It’s about a 40 minute walk and takes us past Smithfield market, where my old offices used to be. We nearly didn’t make it in one piece as Josh’s wheelchair got stuck in a sunken manhole cover when we were crossing the road and he was very nearly thrown head first onto the tarmac. The back of the wheelchair left a large gash in my leg, but it was a miracle Josh survived. He was pretty shaken, but not stirred – like one of Daniel Craig’s dry Martinis. The Museum was fantastic and, even more importantly, empty. A leisurely stroll through the ages saw us looking at an ancient hippopotamus tooth found in South Peckham one minute, then trying on a fireman’s helmet from the Great Fire of London the next. Josh tires after a couple of hours and we head back. Joseph and I say a quick goodbye then drive home, arriving early enough to have a quick game of football in the garden before it’s dark. There’s enough Indian food left over from Claire’s do for me not to have to cook tonight, which is nice. There’s a fair bit of alcohol hanging around too, which should mean an even more relaxing end to what’s been a near perfect day.
