Monday 7th December
Latest news on Josh is that he has an E-coli infection in addition to everything else. Whether this means he’s in quarantine again or not remains unclear. Despite a blood transfusion his count remains low and he may well need another in the next few days. With Joseph safely locked away at school, I make my way to the first of several meetings today via Great Ormond Street. It’s not that I can’t keep away, but I left my mobile charger behind on Saturday and am running on low charge at the moment. So’s the phone. The hospital is still full of pictures of Josh beaming out from the front cover of the Xmas catalogue – even though it doesn’t look like him because of his hamster cheeks and NG tube. I wonder if they can re-touch him to look like he does now ? If Kate Winslet can have her legs slimmed and Keira Knightly can have a cleavage airbrushed in, I can’t see why Joshie can’t have his hair and tube removed and a couple of lbs taken off his chops. He’s awake when I arrive but his face matches the colour of his sheets, which are off white by the way. A cancelled meeting means killing time at the Vue cinema watching ‘Paranormal Activity’ which is good but nothing like as scary as the ticket price which is £11.90. As the smallest salt popcorn is another £4.10, I decide I can’t afford a drink and spend the next 89 minutes watching the movie with the thirst from hell. Make my next meeting with minutes to spare and the shoot goes well in spite, or even because, of the torrential rain. We are filming babies sleeping in mangers at key London locations. I’ll explain next week and let you know which charity it’s for. Apart from coming up with the idea and writing the commercial, I’m also in charge of the hay and run around London chucking it anywhere that looks vaguely cinematic. By the time I get home, just before midnight, I’m wet, exhausted and smell like Shergar.
Tuesday 8th December
Pick up Joseph from his Auntie Carole’s house, where he was on his best behaviour and slept well despite his Scooby Doo blow-up bed slowly deflating overnight. The traffic is nose to tail all the way to school but we arrive on time. As he toddles into the classroom clutching his Rice Krispie breakfast bar, I queue up outside the main entrance for his nativity play. I’m hardly through the door when I’m met by our friend and ex-neighbour who also happens to be the school secretary. She leads me to the front row and plonks me down in a prime seat in the Reserved section. It really is a case of who you know. Resist the temptation to ask if she can swing tickets for West End shows or the World Cup finals as well. Joseph looks fabulous as an angel and sings like one too. Everyone in his reception class is an angel which is a shame as we’d hoped he’d get the part of Joseph. This is a far less demanding role than you might first think, as all you have to do is lead a donkey round the hall for a few minutes and saw a few bits of wood every time the plot begins to flag or someone forgets their lines. Breaside school readers may be slightly peeved to hear that the cost of a DVD of the performance is just £5 and the proceeds go to the school, as opposed to close to £20 which goes straight to a video production company. Leave Joseph beaming away as soon as the parent photo session is over and hot foot it home to pick up my bags and drop off the car. Josh is lively to say the least when I arrive and has worn poor Claire out. She’s also suffering from cripplingly bad headaches. Bizarrely, these were alleviated a little when she had her buttocks massaged by a Chinese masseuse near Russell Square. Josh finds the idea of having a bum rub to get rid of a headache hilarious and almost falls out of bed he’s laughing so much. The occupational therapist arrives while we’re both there to assess his fine motor skills. There are no surprises other than that she’s surprised at how contradictory the results are. It’s par for the course for us as Josh is clearly a medical enigma in just about every way. For some reason, it says in Josh’s file that he has had GVHD in his bowel for the last 7 days or so which is frightening news. Claire asks me to check this out and I’m later told it’s a mistake that nobody can explain and has simply been copied down each day by the next doctor without thinking. The afternoon is shambolic. He’s left for nearly an hour once his TPN finishes and his elemental feed isn’t stopped when it should be either. I manage to get him released seconds before the physio arrives to take him to the gym but she is overruled by the renal team who are 30 minutes late coming up to his room to give him an ultrasound scan. The end result is Josh doesn’t get much time off his leash to run around on the ward. He probably overdoes it in an effort to make up for lost time and throws up when he’s back in the room. He also has a painful bowel attack that results in having to chuck another pair of pants in the bin. It’s late by the time he’s back on his feed and TPN. There are 3 new children on the ward but nobody is quite sure why everything is so backlogged today. It’s a mystery, like one of those traffic snarl ups on M25 that suddenly clears without you ever knowing what the hold-up was. Josh goes straight to sleep but another faulty set on his TPN means that we are up most of the night. At one point, when he calls me to take away his wee bottle, he remarks how quiet the machines are. They’ve been turned off again which is not good news as we need to get his weight up. At least we can finally get some sleep though. A quick glance up at the clock tells me it’s 7.20am and time to get up. Cock-a-doodle-doo…
Wednesday 9th December
Start the day by writing some copy, even though my brain’s screaming for sleep. Lying on the bed reading it back I can’t help watching Josh. Every parent wastes hours watching their children sleep, usually when they’re babies. You don’t really get the chance so much when they’re older as under normal circumstances you don’t share a cell with them. In hospital, he always sleeps with one pillow under his head and another under his feet. He looks peaceful and serene until around about 10am when he has developed a habit of turning round in bed so he’s lying on his tummy with his head where his feet should be and vice-versa. How he does this without getting his tubes twisted is totally beyond me. Let’s hope the nurses don’t get confused when they do his obs and stick the thermometer in the wrong end. An hour later he’s the right way up again and wide awake. The day progresses without incident until the ward round. The doctors remain pleased with Josh’s progress, but the conversation Claire had with the Gastro doctors on Monday hasn’t been communicated to anyone on the ward. They told her Josh’s elemental feed would go up at a rate of 10ml a day and that his TPN would gradually be reduced. The aim is to get him back up to 140ml an hour for around 16 hours a day which is what he was on at home before we came in. It all makes sense but none of it has been actioned, so we are already a day behind schedule. At lunchtime I meet a friend for Tapas and get treated yet again. Josh comes off his machines just after I get back and cries out in pain as he slides down off the bed. His knee is swollen. Whilst this doesn’t stop him hobbling off down the corridor in pursuit of nurses, we’re both worried as he has had this before and it’s potentially a sign of his inflammation returning. Previously it was the size of a football and he couldn’t bend it without screaming. The doctors are quick to react and the plan is to put him on a steroid pulse and three IV antibiotics, just in case it’s an infection. They suspect it is his inflammatory bowel disease rearing its ugly head again, but reassure us that it doesn’t mean the transplant hasn’t worked. Apparently it can take several years before the cells in the tissues are replaced. The rheumatoid team will be up in the morning to take a scan. We decide to skip Josh’s bath given his condition. The Piriton he has before one of the antibiotics usually sends him to sleep within seconds, but tonight just makes him yawn and slur his words like a town drunk. Any minute now I’m expecting him to start singing ‘ Show me the way to go home .’
Thursday 10th December
Whilst Josh made no sense whatsoever after having his Piriton last night, he managed to stay awake for another two hours. When he finally succumbed, a relatively quiet night meant we both slept soundly. Josh is still in cloud cuckooland when a member of the rheumatoid team comes up to examine his joints. He wakes on being prodded, as you would, but politely lets her do her stuff without complaining once. His knee appears much better but is still very swollen. A little baffled by what she finds, the rheumatologist leaves after 5 minutes and vows to return later with her superior. With a stronger internet signal than usual in our room today, Josh spends most of the morning on the laptop tackling key stage 2 work on the BBC Bitesize website and does remarkably well. His teacher arrives just after he’s had another push of Piriton before his next antibiotic infusion and it’s touch and go whether he’ll manage to stay awake for his lesson. I explain that she shouldn’t take it personally if he nods off and then disappear just as he starts to yawn. Take a quick walk up to St Pancreas to see the new shopping complex at the Eurostar terminal. It’s a huge improvement but not really for me. A mixed kebab later and I find myself walking past The Brunswick Gallery. A sign tells me it’s the last day of a photographic exhibition of celebrity portraits. Normally I’d be in like a shot, but it’s a collection of Heat magazine shots and I’m worried about being spotted. I take a deep breath and decide to brave it, sneaking through the door like a politician creeping into a cheap strip joint. Inside, there’s nobody there but me and a rather unglamorous woman in a chair guarding the photos presumably. Simon Cowell is there with a plaster across his mouth to shut him up, Gordon Ramsey naked except for a pinny with a bra and suspenders printed on it and Jordan serving behind a melon counter. Is it art ? I think not but it passes a few minutes and seeing James Corden posing like Beckham in Armani undercrackers isn’t something I’ll forget in a hurry – no matter how hard I try. Back in the real world, Josh has completed a wish box. His teacher tells me he was the only child she’s ever done this with who managed to come up with 6 wishes for the world completely unprompted. Two of his wishes, that every child had a mum and dad and that there were no homeless children in the world, sprang into his head because of the project I’m working on, but it’s his last wish that nearly has me in tears: ‘I wish there were no more ill people in the world.’ I’ve hardly had time to dab my eyes before the bigger rheumatoid cheese we were promised earlier pops up to give Josh another examination. She explains with sadistic relish that they would normally use a needle to drain the fluid from his knee, but thankfully follows my advice to leave it a day or so as we think it’s improving on its own. Josh breathes an audible sigh of relief as the colour drains back to his face. After more maths on the laptop, he’s off down the corridor armed with my digital camera to photograph the nurses, hopefully their faces rather than their bottoms. He returns 20 minutes later with around 50 pictures of them all with outstretched hands hiding their faces. What is it with girls and photos ? Josh then starts a game of dare with one of the student nurses who whispers into his ear. Two minutes later he walks over and kisses me full on the lips before running away giggling. Thankfully he doesn’t dare me to do it to her. Josh finally gets his second blood transfusion of the week after his bath and dressing change. This is done late afternoon as I was told yesterday it’s more dangerous to do transfusions at night, simply because there are less staff around if anything goes wrong. This comes as a surprise as it’s generally been done at night in the past. Strange to see so much blood going in your son as he sits there merrily sticking goals past my injury and suspension ridden Everton side on FIFA 10. Josh’s knee injury doesn’t seem to affect him at all as his namesake bangs in a second half hat-trick.
Friday 11th December
Last night was a shocker. Josh was tossing and turning in his sleep all night long and waking every hour or so in pain and having soiled. He must’ve gone through 6 pairs of pants before we ran out and had to resort to pull-ups. It’s all too familiar and a real worry. Hugging him tightly as he stands trembling by his bed sobbing his heart out, I can’t help wanting to join in. Have we come this far only to end up right back where we started ? I’d almost forgotten the nightly ritual of seeing him suffering and hearing him screaming with pain and frustration. It all comes flooding back immediately, although this time there’s a new sense of desperation in his cries as if he’s had enough, which he no doubt has. It’s nearly 9am before I wake, having had only a couple of hours of interrupted sleep at best it takes a real effort to climb out of bed. Josh is fast asleep and looking peaceful finally, but it’s the calm before the storm and he’s out of bed howling like wounded animal with the hour. I speak with one of the doctors and push a dose of morphine down his line as soon as it’s brought into the room. Claire’s arrival just before 11am coincides with the psychologists first appearance for since we arrived on the ward. She helped assess Josh last year and was really helpful. Today I don’t have time to listen and pack my bags around her as she catches up with Claire. A few minutes later I ask her to leave so I can brief Claire on the situation before heading off to an edit. When I kiss Josh goodbye he hardly stirs. The session at the production company goes on longer than expected because it’s slower working in HD and I’m now on the wrong side of town for my train. The only way of picking Joseph up on time is to dash through the streets with my suitcase in tow, jump on a train to Petts Wood, which is one stop past ours, and turn up at the school gates laden with baggage. This just about works, although Joseph has his scooter with him and the mile or so walk home seems to take forever. I can feel a twinge in my back as we turn into our road. Please God, don’t let it go again. Barely enough time to bung the washing in before we’re off to his martial arts class. Claire updates me on Josh. Like us, the doctors don’t think it’s the feed that has aggravated his inflammation and are looking for further clues. If he doesn’t improve over the weekend they’ll give him a high steroid pulse for 3 consecutive days to try and pull him around. A similar thing happened to a previous BMT patient who is fine now, so we can relax a little – it’s not necessarily that the transplant has failed to work. When Joseph’s lesson finishes I narrowly escape giving our next door neighbour’s nanny and children a lift home as we decide to head for the local Harvester instead. After Joseph’s demolished his Scampi and chips we head back for bath and story. Lying in bed next to him as he drifts off, I start reading today’s Evening Standard. It appears two British businessmen have come up with a new application for the iPhone that finds the nearest London loo for you. Claire will be ecstatic. Josh, I expect, even more so.
Saturday 12th December
During our brief time together at the hospital yesterday, Claire and I realised we’d hardly spoken all week. Rushed handovers, daily routines and demanding children at both ends meant that we’d only exchanged the barest bones of information. Claire hasn’t read the blog for a week and a half and I didn’t even get to tell her about Josh’s latest blood transfusion. This means that right now, dear reader, you probably know more about what’s going on in our lives than we do. Quite where Joshua’s current blip in health leaves us is anyone’s guess. We have no plans for Christmas because we have no idea if we’ll be together or apart. Josh celebrated his ninth birthday at Great Ormond Street last year, and they did a great job of trying to make his day special with a party and music in the main playroom on the ground floor. Christmas, isolated on the ward with no children the same age, is a very different prospect. You don’t even get Jimmy Saville trying to fix stuff for you these days. With Christmas top of mind for once, Joseph and I head off to Polehill Garden Centre and the Santa Express. The weather remains good for the most part as we hop on a miniature gauge train for the very short trip (about 50m) to Santa’s Grotto. Joseph makes a friend in the queue who shares a gingerbread man with him and Santa is as rosy cheeked, chubby and jovial as you’d want him to be. Only the present disappoints as they’d have been better off not giving one at all. Live Reindeer are on display nearby, although none of them look lively enough to stand up, let alone pull a heavy, sack laden sleigh through the night skies. Back home, Joseph is coughing away like the Marlboro man and clearly isn’t himself. Claire tells me last night with Josh was pretty much identical to Thursday with him waking every hour or so, soiling and crying out in pain. It’s the X Factor final tonight but a text arrives to tell me the TV system has crashed at GOSH and Josh is having an early night. I record it for him, then fast forward through to save myself precious time. If our changeovers carry on as normal,I only have 3 more days at home before Christmas and haven’t got much to spare…
Sunday 13th December
No change as far as Josh is concerned, unfortunately. Last night was just the same as Thursday and Friday. His blood pressure is also way up, probably as a result of his discomfort, but that’s no consolation given the number of drugs he’s currently on to keep it low. There’s also the danger of whatever Joseph has being passed on to Josh. Claire isn’t feeling too good and I already have a throat tickle. Apart from his cough, Joseph has a good day. He holds my ladder and ventures right to the top helping me hang icicle lights outside around the front porch, he beats me at a Dr Who board game for 8 year olds with ease and trots off happily to a 5th birthday party at a pottery workshop in Petts Wood. While he’s painting and glazing, I take full advantage of being alone to grocery shop and iron. A woman’s work is never done. Actually, I’ve never understood that saying. Why is it never done ? Are they too busy talking on their iPhones or at the hairdressers ? Why brag about never finishing your work ? It’s beyond me. After picking Joseph up, I drive past the front of the house so he can see our Christmas lights. They look wonderful but I may need to adjust the setting. There are dozens of permutations from static to a fast strobe effect. They are currently set on the epileptic fit inducing notch and it’s a miracle nobody’s had an attack and crashed their car whilst driving past. Once we’ve eaten and Joseph’s had his Vic chest rub for the night, I glance at the Sunday papers. Kate and Gerry McCann are back in Portugal to protest against a Portugese cop’s book about the case. This Christmas will be their 3rd without Madeleine. Whether we’re all together or not this year, it’s our 6th without Alex. We know what it’s like to fly home from Portugal without one of your children and never see them again, but at least we know what happened to Alex and have some closure. I can’t begin to imagine what it’s like to not know where your child is or whether they’re even alive or not…
