Sunday 13th March
It’s Lent and Joseph’s given up TV. He never watches much anyway and he’s added a caveat that he can still watch movies, but he probably won’t. This is a far greater loss to me than it is to him as I generally write the blog at home at 7am while he watches CBBC. After posting a hastily written entry online, we’re up and about in an attempt to get the house in order before Claire comes home. Cleaning Joseph’s mud caked trainers, football boots and wellies seems as good a place as any for me to start while Joseph reads his school book and practices this week’s spellings. After driving in, we find Great Ormond Street closed as there’s a bloody great crane in the road and building work going on. We park a few streets away and arrived soaked as it starts to rain the moment we climb out of the car. Josh and Joseph play FIFA while I have lunch, then Claire takes Joseph out shortly after. Josh’s ankles have ballooned as has his face. We’re guessing it’s fluid, but he’s in balance and losing weight so we’re probably wrong. Claire’s been marking his non-verbal reasoning books and, whilst he’s enjoying doing them, he’s struggling with the work and there are big gaps appearing in his logic that are more than likely down to his encephalitis. Whether they’ll always be there is hard to say. He’s aware that he can’t remember certain things and finds it frustrating, but otherwise he seems to be in good spirits. A gastro doctor pops in to in to see how he is and tells me his soaring liver enzymes suggest a gall bladder problem. Claire’s been worried about his plummeting lymphacytes but the BMT team didn’t appear to be too concerned when she brought it up, even though it leaves his brain at risk. Quite what this week will bring I have no idea, but then who does ? Recent events in New Zealand, and now Japan, only go to show that none of us know what lies round the next corner. We just happen to be expecting something to be lurking there more than most...
Monday 14th March
New headphones. Sounds simple enough, but there’s so much choice. Josh’s are on their last legs and really important to him as it’s the only way he can hear TV. It’s like that when you’re deaf. I use my Blackberry in-ear phones or a pair of over-the-head ones from the pound shop. Josh’s are slightly more sophisticated and came from Argos, but they don’t stock the same ones anymore. They now sell over 354 ranging from £2.99 to over £300. Where do you start ? A great Argos app helps me decide. It even tells me how many are in stock at my nearest branch which is 0.46 miles away on New Oxford Street. There’s another (0.47 miles away) in Holborn that I know will be quieter, so I head there while Josh is still asleep. I’m in and out in less than 5 minutes, then it’s off to Sainsbury’s to buy tuna and tomatoes for his lunch. I call in at the Sick Children’s Trust house in the hope I can pick up spare keys, as Claire accidentally took ours home, but there’s nobody there. I’m back on the ward less than 30 minutes after I left, but my armpits have taken a pounding despite the Lynx deodorant Claire bought me for Christmas. Josh is still asleep but wakes soon after. It’s a mad day with appointments stacking up like dirty plates. Ophthalmology are due at 12.30pm but still haven’t appeared by 3pm. The new BMT doctor is late doing ward round and the Gastro doctors want to see me, but can’t give the nurses even the vaguest idea of when that might be. A Gastro dietician comes up just before lunch to tell me Josh can officially eat, but nothing fatty like cheese. This goes down like a lead balloon with Josh who’s reduced to tears. He’s too late for any meals from the hospital kitchen today, so I rush off to cook his pasta having taken advantage of physio turning up 3 hours early on the off chance Josh would be awake and willing, which he is. I’m back just after his teacher arrives for school, but Josh doesn’t eat any of his pasta and just keeps asking for cheese over and over again. Things fall into place by late afternoon and most importantly his eyes, or should that be eye, is fine. By this time Josh is tired and wants to sleep rather than have a bath, so I slip out to meet a business partner and catch up while he snoozes. We discuss a few upcoming projects over a hot chocolate and it’s nice to get out and talk about non-medical matters. Josh is sitting in his wheelchair in the corridor waiting for me and chatting with the nurses when I return. We play a few games and read and sit down to watch ‘Marmaduke’ together on DVD. His swollen ankles and eyes are being put down to low albumin, which can cause fluids to leak out into his body. He’ll be having an infusion overnight which isn’t perfect timing as it’s one of those that drips through on a sensor and usually ends up bleeping for 4 hours.
Tuesday 15th March
Josh hardly slept and neither did I. It wasn’t so much the bleeping machines, it was more a case of him being hyperactive. He tried desperately to nod off all night, but his mind kept returning to cheese. He was like a live action version of Wallace and it’s surely only a matter of time before he stares at the moon and wonders if it’s made of Wensleydale. Ophthalmology are up at 9am to give Josh a routine eye test, but given that he never opens them before 10am, they go away again. He’s shattered from lack of sleep but just about manages to wake before Claire arrives and we swap over. Back home, I take Joseph to his new martial arts class which appears to be well run and very disciplined. They even have to bow before they nip to the loo ! Claire fills me in on ward round in the evening. She’s fed up with all the indecision and mix-ups. We still don’t know if he’s meant to have lipids, even though Gastro want to increase the volume and include more calories as he’s been losing weight. We still don’t know what’s causing his pancreatitis, although everybody’s now coming round to the idea that it’s HHV6 even though there still appears to be no clear evidence suggesting a link. Josh’s donor has agreed to give more stem cells, which we’re hoping will boost his platelets and his overall blood count. It should happen soon, but it will be 3-6 weeks before he’ll see any real benefit.Tadworth are keeping Josh’s room open, but if he’s not in it by April 1st they will have to reapply to Bromley council for funding – which wouldn’t be a foregone conclusion given council cuts. They’ll probably turn him down and spend the money on new potted plants for the office. It’s going to be an action packed couple of days at home for me as a job I’ve turned down twice since Friday came back last night with the company concerned being so accommodating and sounding so desperate I couldn’t refuse. I’ve always been a sucker for a good, old fashioned sob story...
Wednesday 16th March
Back to Lent again for a moment, and Josh is excused this year as he’s fasted for longer than 40 days and 40 nights already. He’s giving up cheese, I suppose, which probably counts even though it’s not of his own volition. Claire’s decided to do without chocolate which is good news for me and Joseph as it means all the more for us over the next few weeks. As for me, I’m sacrificing Chinese food between now and Easter. A tough decision made infinitely easier after the cockroach incident last week. It’s a shame I didn’t give up work, as the latest brief I’ve got is a particularly difficult one. It’s not made any easier when Joseph’s school call to let me know he’s not feeling well and has a temperature. I rush to pick him up and give him some neurofen when we arrive home, which appears to perk him up. It makes today an even trickier balancing act. Although the vast majority of the work I have to do can’t be done until tonight, it means a very different afternoon to the one I’d planned and little gets done other than washing and a couple of phone calls. A friend pops round offering to lend us their portable DVD player, but I pass as we appear to be cursed and it’s unlikely to last more than an hour in our hands. Inspired by her generosity, and with Joseph feeling much better an hour later, we nip to Currys to ask again if they can repair or exchange ours. Claire tried last week but was palmed off with a phone number that proved little help. I try a different branch and come away with a brand new Toshiba player and a 3 year guarantee. Whoopee ! Josh was up weeing all last night and Claire had very little sleep. He’s been vomiting again today and is feeling tired. His stem cell top-up is scheduled for March 25th. Claire had an afternoon meeting with the virologist who’s been putting together a detailed study of Josh’s pancreatitis attacks to see how they relate to his HHV6 levels. In short, they don’t. With Joseph asleep, I settle down to work knowing that it’ll be morning before I’ve finished, but hoping that I’m in bed before the birds wake up.
Thursday 17th March
I never got to bed. Joseph found me working away when he came down at 6am. He’s fine this morning and goes into school. It’s own clothes day, which usually means trying on several outfits before finally settling on something totally unsuitable. Today I let him wear his football kit as I’m too tired to argue and he looks so happy. We finally caught the last, somewhat elusive, mouse in the summer house attic yesterday. It wasn’t a particularly Christian burial and no eulogies were said, but there were flowers – at the bottom of the bin bag I deposited him in. The rest of the day is a bit hazy as tiredness follows me around like some huge soporific puppy dog. Josh is sporting a new crop top like Justin Beiber’s thanks to Auntie Linda who came yesterday. Our new doctor, who is only here for a week, suggested Josh gets out of his room more and mixes with the two other older children on the ward. Excellent advice if it wasn’t for the fact his blood count means he can’t. I almost have too long for lunch as Josh has school followed immediately by a play specialist. A quick spin round the British Museum passes the time. I’m back for physio which takes place in the gym and Josh does well. He’s doing well all round at the moment, but it’s all relative. He’s zonked by 8pm and so am I, although I have to put the finishing touches to a job I’m working on before bed. After that and an episode of Mad Men I’m packed and ready for the Land of Nod. Now, where did I leave my Passport ?
Friday 18th March
After a glorious night’s sleep ( I was up 5 times, but that’s par for the course), I lie-in until 9am. Josh is up an hour later and has a good day. We manage some of his work books in the morning and he thrashes me at FIFA. He’s eating toast and butter as his diet is restricted by fat rather than food type now. Ward round is a chance to ask what’s going on as nobody seems quite sure at the moment. Josh’s Gancyclovir course finishes today. As expected, his white cell count has come crashing down but it wouldn’t appear to have affected him neurologically which is a relief. They’re now saying the HHV6 is completely unconnected to his pancreatitis, but could still be supressing his neutophils and platelets. We shall see. I’m told gastro have suggested Josh goes back under their care, but they’ve been politely rebuffed, thankfully. The doctors are fine but communication remains non existent. One of them visits us after lunch. There’s still no date for his MRCP. If there’s any evidence to suggest gall stones they’ll whip his gall bladder out. There’s even talk of just doing it anyway, which we wouldn’t allow. Training us on TPN is a great idea but only if they put it in hand now while we’re here, rather than expect Josh to come back after being discharged. We head off to the gym with Josh sporting a ‘cool dude’ baseball cap he designed himself yesterday and he enjoys a good session. He’s tired afterwards and asleep by 5.30pm. Claire asks me to check what they’re replacing the Ganciclovir with and the answer is a little worrying as it’s not Aciclovir which we’d been told was the best thing to protect his remaining eye. Even more worryingly, it’s been switched to an oral drug. Not a great idea when he was vomiting 2-3 times a day only a short time ago and may not absorb it. All we want is a little reassurance as to why it’s been done, but nobody can tell us. The main consultant is in tomorrow so we’ll get an answer then. Chances are they know what they’re doing but just haven’t told us...
Saturday 19th March
Congratulations to Peter Crouch and Abbey Clancy on the birth of their baby daughter. Apparently the head came out on Monday but the feet have only just appeared. Talking of football, Josh discovered his name in last week’s Match Magazine at No.14 in their Fantasy Footy league. There are 120,000 in it and he’s also through to the last 128 in the knockout cup. Go Joshie ! He’s up early this morning and working his way through a school book by 9am. He had platelets last night but they’ve only risen from 28 to 29, so he’ll need more today. He tires quickly and I manage to soak up some sunshine while he has a nap. The Brunswick centre is always heaving on a Saturday with a food market that’s a tantalising mix of exotic sights and smells. I’m torn between an Argentine steak sandwich and Portugese peri-peri chicken, but neither are ready so I settle for a Thai green curry instead. I gave up Chinese for lent, but Thailand’s a different country so hopefully I’ll be forgiven. Anyway, who’s to say the big man himself didn’t sneak a Kit Kat under his robe when he wandered out into the wilderness ? Josh is sitting at the nurse’s station when I return. He’s mixing with the other children which is nice to see, but a little worrying given his bloods. Claire calls with worries of a leaking water pipe at home, but soon has the situation under control. We cope well with what life’s thrown at us, but sometimes it’s a case of the straw that breaks the camel’s back. We play FIFA then slip outside as soon as he’s off his TPN. It’s such a beautiful day we make tracks for the park to watch the football. A nurse calls when our consultant arrives and he explains the decision to switch Josh to an oral anti-viral drug, but concedes that absorption could be a problem. They’ll test for levels on Monday and switch back to IV if it’s an issue. Josh and I venture out again for another hour of football in the sun followed by a nice, hot bath. It’s been a wonderful day and ends with Josh singing away at the top of his voice before climbing into bed to watch TV. Days like this make you glad to be alive. Bring on summer !
Sunday 20th March
Josh’s best friend is visiting him today, although I don’t mention it just in case it doesn’t happen. He’s awake relatively early and we sit and have breakfast together for the first time in I don’t know how long. Joseph and Claire arrive at noon followed by Nick and his mum and dad an hour later. Even though everyone’s well, we decide to go out as it reduces the chances of Josh catching anything. At Josh’s request we head for the same park as yesterday to watch the football again. It’s not as warm today, but still sunny. After about 30 minutes I run back to the car for the football we keep in the boot and we all have an impromptu kickabout. Claire and I help Josh out of his wheelchair and support him, literally, for a few minutes while he passes the ball back and forth. After that he’s happy to sit in his wheelchair and be goalkeeper. He has a great time but knows when he’s had enough and wants to go back to the ward. Joseph and I head off home, leaving the two boys playing on the PS3. It’s been another good day and it’s so nice to see Josh stable. I’ve got a busy week ahead but fall asleep next to Joseph and only wake briefly to text Claire that I’m too tired to talk tonight. Coincidentally, there’s a message from her on our answer machine saying exactly the same thing.
