Monday 16th November 16, 2009
An important week as Wednesday is the 28th day since Josh’s transplant. By then the specialists should be able to evaluate how well engraftment is going and what percentage of the new blood cells being produced are from the donor’s bone marrow. This is the best way to gauge whether the transplant is going the right way or not. The biggest concern at this point is Graft-Versus-Host Disease (GVHD), a common side effect that occurs if the transplanted cells recognize Josh’s tissues as foreign and attack them. This can cause all manner of problems, including skin rashes, liver problems and diarrhea. Blissfully unaware of any potential battle going on inside his body, Josh is still fast asleep as I creep out to make a meeting knowing that Claire’s already on her way. It’s going to be a real chop and change week to get back into our normal routine by the weekend. The presentation goes well and it looks like we’ve won the charity project and hopefully the longer term account. Not much money in it, but who cares when it keeps my creative juices flowing and can make a real difference to real lives. The journey home afterwards is a nightmare though. Leave just in time to make my train but all Sevenoaks trains have been cancelled. This means a trek across the City dragging a suitcase, an argument with London Underground staff who refuse to let me through with my national rail ticket as they’ve heard nothing about the cancellations, 12 sets of steps to negotiate hauling a heavy case with my bad back to switch lines and another argument with staff at Victoria. Having spent the morning presenting work about unwanted, unloved and neglected children there’s a real danger of Joseph being left standing at the school gates. Thankfully the social workers don’t have to be called in as my next train is late and I clamber on board hot, sweaty and exhausted with seconds to spare. No time to change clothes before picking Joseph up which isn’t all bad as it means other parents keep their distance and I don’t have to make polite conversation. Joseph beams and runs into my arms shouting ‘it’s my Mummy !’ which causes great amusement all round the playground. As I’m back at GOSH on Wednesday, there really aren’t enough hours to do everything so I start with the most vital and bung in the first load of washing. After that its work which means Joseph gets to watch 3 episodes of Ben 10 back-to-back. Christmas has come early as far as he’s concerned. Just time to dress up as Spiderman ( him not me) and have a slo-mo fight after dinner and before bed. Josh has had a good day by all accounts and Claire and I grab 5 minutes to discuss plans for the garden which has to be demolished and rebuilt before spring as the logs are rotting and covered in spores which are a real threat to Joshua’s health. Given that I’ve been told I can’t drill a hole in a wall for 6 months without putting him at risk it needs to be sorted quickly and a big legal battle is drawing to a close this month. It would be nice to have one less thing to worry about.
Tuesday 17th November
In between taking Joseph to school, plotting with landscape gardeners and working flat out, I zip into Bromley for food and supplies. It’s strange seeing men everywhere. Being a dad in hospital means I’m surrounded by nurses and mums all day with very few males in sight. I’m not complaining. As a man on the ward I’m a minority group, which is rather exciting as I’ve never been part of a minority before. Neither gay, disabled, black or Jewish, I've always been part of life's comfortable majority. History says being in a minority sucks, but these days they have more rights than anyone else, right ? Not at Great Ormond Street unfortunately. Dad's are definitely persona non grata. Accommodation is the best example as it’s almost exclusively aimed at mums. At various points on Rainforest last year, where they don’t let you sleep on the ward unless you’re in a cubicle, I’ve been faced with either walking the streets or dressing up like Robin Williams in Mrs Doubtfire and sneaking into the women’s accommodation halls. I’ve even found myself cleaning up other people’s messes in toilets , kitchens and bathrooms just because I think I’ll be blamed as I’m the only man on the ward. At the weekends there are a few more dads around, but whereas all the mums know each other and have a tightly knit social club going on, the men simply nod and smile at each other and look embarrassed. It’s probably the major difference between the sexes and not something we men should be proud of. Far better to dress up in Batman suits and hang from Westminster Abbey campaigning for rights we’ve often sacrificed by walking out on our children in the first place. As you’ve probably gathered, not too much happened today so I’m waffling. I’ll shut up immediately and just tell you that Josh is fine, although he woke at 11pm last night with tons of boundless energy and kept Claire awake until the wee hours. As for Joseph, he dragged me off to a nearby park on the way back from school where I had a good old natter with the other mums until it was dark and we all headed home. Ironically he asked me to dress up in a Batman suit tonight so we could fight crime together with him dressed as Robin. And yes, you read that correctly, I do have a Batman suit...
Wednesday 18th November
Walking through the doors of the hospital feels more like coming home than going home does sometimes. Today is a case in point, having had just two nights back in Bromley. It’s easy to understand why Josh never thinks about being anywhere else. Partly self-preservation, but also because this is his home as far as he’s concerned. He’s beaming as I walk into the room as he knows I’ve brought this week’s Match magazine up with me. Having arrived early, Claire and I enjoy a longer catch up than usual. She spoke to an Orthopaedic Physiotherapist here about Josh’s foot yesterday. Born with Talipes (club foot) in both feet, his left virtually back to front and upside down, Josh had his legs strapped from birth followed by two major operations to correct his worst foot. It’s turning in severely again but we’d been told about a revolutionary new treatment that could avoid further surgery. Developed by a Dr Poinseta, who died two weeks ago and has nothing to do with the red potted plants on sale at M&S every Christmas, it involves encasing his leg in plaster for 6 weeks and changing its position and re-plastering every week. The suggestion is that we do it now whilst he’s in hospital and not that mobile anyway. It makes sense but would give us a potentially insurmountable problem at bath times which could put him at risk. We decide not to decide just yet. This morning was Claire’s turn to be called out of the bath by Josh the moment she climbed in. Unable to squeeze into tight jeans with wet legs, she’d ended up running out in just a towel and a plastic pinny. My suggestion she wears the same outfit at home for me sometime is met with a look that suggests I shouldn’t get my hopes up. To be fair to Josh he had diarrhea running down both legs at the time so it was a legitimate call. Today is pretty action packed with school closely followed by a music session in the playroom before physiotherapy in the gym. Back on the ward, Paul Veys makes a fleeting appearance fresh from his debut on X Factor and waves at Josh to impress the colleagues he’s showing round. Josh waves back feebly and asks who he is in a loud voice. The rest of the day is mad. While I sit in the isolation ward quietly working away, Josh goes on the rampage outside chasing student nurses down the corridor and smacking their bottoms and tickling them for the next two hours. Everyone appears to be having great fun so I don’t intervene. When I do pop my head out, Josh asks me to join in and help him. Not wanting a lawsuit landing on our doormat, I graciously decline. Exhausted by his exploits he’s asleep relatively early and I stay up working for a few more hours. Like the transplant itself, the 28th day has proved to be an anti climax. No bells, no whistles or fanfares, but we should hear the results of today’s tests by the end of the week. Too tired to remember whether I’m here or at home then…
Thursday 19th November
A number of people have been shocked by some of the things that have gone on at the hospital, but you shouldn’t be. Wherever you work it’s the same. Rules that make no sense, machines that never work when you need them most, people you like that are lazy, people you’re less keen on who are fantastic at their jobs. Hospitals are run just like any other business and things will always go wrong. The fact that the consequences are so much greater than a few lost documents or an unhappy client means that everyone is more careful about what they do but it can never be perfect. Overall there are some dedicated doctors, nurses, therapists and cleaners here looking after Josh and we’re more than pleased with how he’s been cared for. Having said all that, the day doesn’t start well with one of the nurses somehow managing to get tangled up in his wires when she comes in to read his pump this morning – which is just plain clumsy. Josh is up and raring to go before 10am which is the last thing I need with the amount of work on at the moment. He reads until the doctor does her rounds. The news isn’t great. The plan had been to start him on elemental feed this week. This is the milk-like liquid we’ve fed him on at home through his tube for the last two years or so. The team are now worried that if they rush this there’s a danger that GVHD could develop and target Josh’s stomach as it’s his weak point. With this in mind they’ve decided to delay everything for another couple of weeks. It all makes sense but may scupper our hopes of enjoying Christmas in Kent. I suspect they’re stalling as they need Joshua’s gastro consultant to approve the plan and he’s away until sometime next week, so with any luck things may be brought forward. After elemental starts, they will slowly introduce a dairy, soya, egg, wheat and gluten free diet. Josh has been on this before and it doesn’t leave anything edible left other than rice, rice, rice pasta, rice noodles and more rice. The afternoon is spent in the playroom with a four year old girl from the ward who is just like Joseph in personality and she and Josh get on a treat. When her father, who’s looking after her today, has to disappear for a conference call she challenges me to a game of The Simpsons Guess Who which I promptly lose. Serves me right for asking ‘ Does yours have a yellow face ?’ as my first question. Josh decides to spend another evening roaming the corridors and harassing the nurses, so I hardly see him at all until after 9pm when he’s forced to return because his batteries have run out. That’s his pump batteries, unfortunately, and not his own which must be Duracell Ultras as he shows no sign of losing energy until way past both our bedtimes.
Friday 20th November
A tight schedule today as I have a meeting in Soho at 11am and Claire can’t get over here much before then. We meet in the street just outside the hospital reception to save precious minutes of hand washing and negotiating airlocks. This means our handover consists of a quick peck on the cheek, swapping dirty laundry for clean and handing over a pristine travelcard. Then we’re off in opposite directions, trailing our wheelie suitcases behind us like two air stewardesses bound for different continents on separate flights. The meeting is at a production company just off Regent Street. I was over that way with Josh last year. I’d taken him down to the hospital schoolroom in his wheelchair for a lesson only to discover it closed for half term. Deciding to go out rather than traipse back to the room, I’d pushed him halfway to Hamleys before stepping in a puddle and realizing I was still wearing my slippers. Fortunately they weren’t tartan ones so hopefully nobody noticed. Today I’m properly attired in shiny black shoes which don’t go with my trousers at all but I’m down to my last set of clean clothes so there wasn’t much choice. After an enjoyable and constructive meeting I head for Victoria. At home Claire’s done all last week’s ironing and around half a million other jobs but the chores are still piling up. Last few leaves to be swept up, lawn to be trodden down again, fish to be fed, food shopping to be done, car to fill up with petrol. Also have to make our washing machine accessible for John Lewis subcontractors to come in and fix as the door won’t shut properly and we can’t afford to be without it. Next to Josh’s infusion pumps and our portable dvd, it’s the most important machine in our lives at the moment. Joseph earns his green stripe at Taekwondo today which is an excellent achievement. He already has his yellow stripe. I’m concerned it might be a red stripe next as I think that’s a Jamaican lager and he’s still a little young to be drinking. Claire’s news is that Josh has been a bit out of sorts today and very tearful. Either something is up or it’s all just got too much for him which happens from time to time. Joseph is back in his own bed again tonight. I love stretching out in the extra space, but miss smelling his Pepperami breath which never seems to go away after he eats one no matter how long he brushes his teeth for...
Saturday 21st November
Tennis, taekwondo, swimming, gym, Joseph is Action Man without the fuzzy hair and the eagle eye but thankfully with a willy. He also has more dressing-up outfits than Action Man and today he insists on trampoling and beam balancing in his big brother’s Man Utd strip again. All goes well until he collides with a fellow gymnast and falls to the ground clutching his knee like Didier Drogba. It’s just play acting and they both recover a couple of minutes later. On the way home he spots a bus with an ad for Planet 51 on the side and asks to see it. It’s always a shame to go to the cinema without Josh, not just because we miss him, but because it’s far cheaper if he comes with us as his disabled status means I go free as a carer. Amazingly, I didn’t abuse this too much when we were in hospital last year by sneaking him into horror movies or thrillers I wanted to see. I even resisted taking him to The Dark Knight, even though we were both desperate, because I thought it would be unsuitable – which it is. Our most bizarre cinema visit was with Joseph to see Space Chimps last year. Having ushered both the children into pre-booked seats at the Empire Leicester Square, the seat backs in front were so high neither of the boys could see the screen. The film had already started so we made our way to the front row instead, keeping low so as not to block anyone’s vision. Almost as soon as we settled into our new seats the film broke down. As nobody else in the cinema went to alert the staff, I took it upon myself to go. Now back then, Josh was on a 24 hour feed which went down his nasal tube into his stomach. Whenever we left the hospital he carried a backpack with a pump inside. I lifted the backpack up to check it was still working before running out to find someone in charge to explain the problem to. By the time I came back the aisle was blocked by several worried members of the audience and the manager. Someone had watched me hold the backpack aloft, press a couple of buttons and seen a digital LED readout start to count down and assumed I was a terrorist armed with a weapon of mass destruction. I probably didn’t help matters when I ran down the aisle and out of the cinema. Nobody could see the boys because of the high seat backs and nobody had dared edge closer to check out the ‘explosive device’. They were around two minutes away from evacuating the cinema and calling the police. Once everything had been explained, the movie resumed. Thankfully I was neither charged nor banned, although if this had happened in London closer to 7/7, I could well have been shot. Back at home Claire calls to let me know Josh needs a blood transfusion this afternoon, which explains his sluggishness yesterday. He’ll be bouncing off the walls later as a result which means Claire’s unlikely to get much sleep tonight. Joseph and I play football in the garden, carefully trying to negotiate the bare patches of lawn where the crows have done their dirty work then sort out toys for the school fete. Everything I put in the box to go suddenly becomes Joseph’s favourite toy and comes out again. It’s only when I distract him with a bag of animal biscuits that any progress is made. After dinner, once he’s tucked up in bed, I find myself working again in preparation for a new client meeting on Monday. Must remember to wear colour co-ordinated clothes and check I’m not wearing my slippers.
Sunday 22nd November
God is everywhere. Just as well as instead of attending our local church today, Joseph goes to one in Sevenoaks with his 5 year old cousin Elizabeth and my sister-in-law. We’ve been invited over for Sunday Lunch and whilst the children are out I get a chance to catch up with my big brother for the first time in a long time. The whole day is a welcome break from life at home or in hospital and Joseph is on top form. Hopefully the sudden deluge of rain we had while we were there was due to global warming and nothing whatsoever to do with me giving mass a miss. Meanwhile, back at Great Ormond Street, Joshua sleeps through until 1pm before stirring long enough to play a few games and threatening to go back to sleep again. So much for an energy burst after his blood transfusion. Claire had a sneaky look at Josh’s notes today and his anticipated release date is 20th December. Hopefully with good behavior he’ll be out even earlier or does it only work like that in prison ?
See Josh at GOSH at http://www.youtube.com/watch?v=lKMsqlgNcFo
