Sunday 3rd October
Today is officially a day of rest and that’s exactly what we do. Joseph and I stay in bed reading, dozing and watching kids TV until almost 10am when we venture out for a cycle ride to the local newsagents for milk and a paper. Well, Joseph cycles and I half jog, half amble alongside him. He’s so confident on his bike it’s as if he’s been cycling all his life – all 5 years of it anyway. He zips across the smaller, less busy side roads on his own and is such a stickler for road safety, he puts the Green Cross Code man to shame. Not a great comparison actually as the Green Cross Code man of the early 1970’s went on to become the most evil villain in the galaxy, Darth Vader. Did he use a zebra crossing to cross over to the Dark Side ? Meanwhile, back on planet earth, Joseph shows off his football skills with me in the kitchen for what’s left of the morning before watching a Deadly 60 while I deadhead and tidy up the garden during a rare bright spell. After lunch we build a Lego Star Wars lightspeeder that’s actually Joshie’s but we’ll disassemble it before he comes home. That’s followed by a marathon Wii session before we finally sit down to watch the kid’s movie ‘ Monster House’ that was on Channel 5 a few weeks back. Joseph is worried it might be too scary but loves it and never once hides behind the rather large cushion he has on his lap just in case. Claire didn’t sleep much last night. Now Josh can articulate when he needs a wee or needs changing or wants a drink, we end up doing just about everything for him, as the nurses only come in to set up his infusions and give his orals. It takes its toll and she’s planning an early night tonight. Josh has been tired all day and is still hallucinating. He keeps staring at his arms, which are really itchy again. They’re ravaged by rashes and heavily scarred from old picc lines and he’s convinced that there are patterns on them or that they’re covered in Arsenal and Man Utd tattoos. Claire finally managed to get him to watch Strictly and X Factor with her last night, but he didn’t seem all that interested or show any emotion while watching the acts. Sounds like the perfect successor to Simon Cowell…
Monday 4th October
Joseph and I enjoy another day of rest. Unfortunately it’s a Monday so our lovely long lie-in comes to an abrupt halt as soon as I realise it’s almost 8am. I just about manage to get him dressed, shovel breakfast down his throat and have him outside the school gates without forgetting anything too important like his lunchtime snack or his trousers. Listening to LBC on the way home, I learn there’s a tube strike in full swing just a few minutes before Claire texts me to say the same. It only normally affects us if we come into Victoria, but it sounds like there are quite a few mainline cancellations too so I leave the house earlier just in case. Just as well as there are no trains into Kings Cross or Farringdon so I have to take a Victoria train. I’m told to change at Herne Hill but as soon as I clamber off an announcement tells me there are no trains for at least another 40 minutes. I decide to take my chances with the tubes and just manage to scramble back onto the Victoria train just before the doors close. I’m on a tube as soon as I arrive on an underground platform and am at the hospital in record time. Bob Crowe, eat your heart out. In the corridor I bump into Josh’s gastro consultant who’s just been to see him and is delighted that he recognized him and even said his name – which given that it’s Mamoun Elawad is no mean feat. As soon as I walk through the door I have to help the nurse get Josh into his wheelchair and whisk him off for another ultrasound on his heart. Normally he’s gone down on his bed and they’re initially concerned the change of position will affect the scan but then decide it’s okay. Claire remained upstairs in the room to talk to one of the doctors who quizzes her about my comments last week concerning mistakes that had been made. She explains and hopefully he now understands that I was questioning how wise it was for Josh to be in a local hospital communicating with GOSH, when the last time that happened he was kept on steroids for 4 days longer than he should have been and it most likely resulted in him being in a coma for 2 months. I haven’t used that word often when talking about Josh, but it was a deep coma to all intensive purposes and that’s how the doctors are describing it now that he’s no longer in it. Claire joins us at the ultrasound which appears to shows no change in the fluid level around Josh’s heart. There are no plans to drain it yet as it’s difficult to reach, but it may become necessary. Josh had already been to the playroom and had physio in the gym before I arrived and the moment we’re back in his room he has school. I walk Claire towards the station and tell her which route I think is the best way to get home in time to pick Joseph up from school. She makes it with a few minutes to spare. Josh is ready for his nap when I return and sleeps while I take a pre-production call for a shoot this week. When he wakes an hour later we watch this week’s Match of the Day which he really takes an interest in and even tells me which clubs a couple of the new signings have come from which is encouraging and far more impressive than my memory. After that it’s a bath and following a 30 minute soak I manage to get him out in the hoist , down the corridor and back in bed on my own, which is harder than it sounds as I had to negotiate 2 swing doors and was trailing the machines he’s attached to behind me as well. After that and the obligatory 3 or 4 nappy and bed changes, he’s asleep and I’m writing this before settling down to watch the last few episodes of Prison Break. Maybe I should think about getting the blueprints of the hospital tattooed on my body, just in case Josh and I decide to make a run for it…
Tuesday 5th October
What looked like being a shockingly busy night, with Josh getting me out of bed 26 times in the first hour, ended up being a relatively relaxed one with us both sleeping well. We had a lineogram scheduled for 10.15am and took Josh downstairs in his bed. They injected a dye into both the red and white lumins of his Hickman line and watched it progress through a series of x-rays until it dispersed out of the tip into his heart. Josh was fantastic throughout but we still have no definitive answer as to why his lines keep blocking during infusions. Back on the ward we catch up on what’s been happening in the Champions League and Josh is far more interactive than he’s been for months – doing mock celebrations, naming player’s previous clubs and even recognizing German side Werder Bremen purely from their kit. In the middle of this feast of football, physio arrive and Josh sits up on the edge of the bed unaided for at least 15 minutes, throwing and catching a ball. He’s delighted with his performance and smiles throughout. He‘s becoming stronger every day. Back to football for half an hour and then it’s ward round just as Barcelona go 2-1 up. The consensus is to change nothing – I’m talking medical now, rather than football just in case you’re wondering. Josh’s fluid balance appears to have been good for the last few days. His hallucinations have been put down to a new drug they’ve introduced but that’s clearly not the case as they started long before that. We think it’s part of the recovery process but nobody knows for sure. Gastro are talking about re-introducing feed and scoping him, but we all feel it’s too early. Best not to change anything and let his immune system keep battering away at the virus in his brain. Once they’ve gone, Josh’s teacher arrives with her magical iPad and I disappear to catch up on work related calls and find out what I need to prioritise this week. Josh has his regular afternoon nap after that and the ward sister arrives to talk me through the results of the lineogram. It appears he’s grown a Fibrin Sheath which isn’t the name of the new condoms JLS are promoting, but a thin layer of film formed from the blood which is covering the tip of his line. Whether it’s a sheath, a horseshoe or a flap is debatable apparently as each is subtly different, but a flap is thought to be the most likely as his line’s performance changes from one minute to the next. We’ve tried the dyno-rod way of clearing it ( Alteplane), the other options are an Alteplane infusion or ‘stripping ‘which means Josh going under anesthetic and having a wire guided through his tubes which then opens out allowing you pull the film back through the wire. This is the most likely solution but it won’t happen tonight thankfully. OT pay us a visit next and they bring along a new wheelchair for Josh to test drive tomorrow on the way to gym. The seat itself is so wide he’ll need at least 2 pillows behind him in order to be in the right position to bend his knees, but otherwise it appears fine. Josh wakes up and has a real giggle fit discussing Joseph’s Super Mario and Scooby Doo impressions. Josh then launches into his own impressions of all the Super Mario characters which are hilarious. Our nurse today is called Jemma but Josh, for some strange reason, has christened her ‘mushroom’. I guess there are worse nicknames. She joins in the fun and is almost reduced to tears when Josh smiles at her and says he’ll miss his little mushroom tomorrow. He then asks to go to the playroom and after hoisting him into his chair, we try every single X-Box game in there, in the hope we find something playable. It’s not helped by the fact that the console itself is set to display every game’s instructions in German and we no speak Germanicano. We eventually find a snowboarding game we played this time last year and have a great time chasing each other down black runs until Josh begins to tire and my character starts to turn blue with cold from falling off every 5 minutes. He’s due GCSF tonight to boost his immune system and once I’ve lowered him back into bed he asks me to cover him up with his blanket ‘Although not over my face, obviously,’ he adds knowingly. Within seconds his thumb goes straight into his mouth and he’s fast asleep. It’s gone 7.30pm which just about qualifies as a late night for him and he’s done so much today and had his best day in here by some distance. It’s almost a shame to be leaving tomorrow, but then I get to spend a few precious hours at home with Tweedle Dum, so it’s no real hardship.
Wednesday 6th October
It’s an action packed start to the day with hoisting, weighing, wheelchair and gym all before 11am. Josh is in great form once again and manages to score a couple of baskets and knock a few skittles over before shocking everyone by trying to stand of his own accord while gripping the parallel bars. He gets a warm round of applause for an admirable display, made even more admirable by the fact he wasn’t wearing any trousers as we’ve just discovered we don’t have any that fit his ever expanding waistline. Eamonn Holmes no doubt has the same problem. Liam, Josh’s Lemur glove puppet we mought years ago in The Isle of Wight, watches all this admiringly but doesn’t appear to clap for some strange reason. Back on the ward Josh grabs 40 winks before a music session and I’m told that the plan for Josh’s line is to try an infusion to cleanse it. This will only happen if his platelets are high enough as the infusion thins the blood and if he bled he wouldn’t clot. The procedure would require a cannula being put in, however, which isn’t ideal as Josh hates them. Claire arrives at this point with new hair and looking fabulous as always. Her hairdresser can’t wait to get her scissors on Josh and has even volunteered to come to the hospital to trim what she described as ‘his huge afro’. She has a point as he currently looks like he’s stepped out of an episode of Starsky and Hutch in the 70’s. As we’re discussing Josh’s line, the neurologist and the music therapist arrive simultaneously and prepare to over who gets to see Josh first. In a no-holds barred scrap, my money would be on the music therapist to be honest, but the neurologists pull rank on her. They confirm Joshie’s hallucinations are most likely part of the healing process but can’t predict how long they’ll continue for. They offer us some hope that his hearing problems may not be permanent as they could be linked to his encephalitis. Claire feels much better for hearing this, but being a cynical Northerner I remain slightly less enthused. Time will tell and hopefully the news will be good. We shall see. While Josh has music therapy Claire and I share today’s chicken and mushroom pie a la Gosh in the parents room and catch up on what’s been happening at home and away. I return to the room briefly to grab my stuff and say goodbye to Josh, He appears to be joining in the music session and enjoying himself, but seriously he’s eleven years old and you’d think they’d have something a little more appropriate for him to play along to than ‘Twinkle, twinkle, little star.’ Just make my train and have time to inspect Claire’s butt before picking up Joseph. It’s now been installed and is full after just 24 hours. That’s 250 gallons of rainwater, we’re talking about here. I turn on the tap and let it drain away slowly which it does without flooding. Outside school I bump into Claire’s Zumba buddy who is attending a class tonight with someone else in Claire’s absence. She describes it as feeling like she’s having an affair, in which case I can only hope Claire’s more forgiving than she would ever be if she caught me doing a horizontal samba with another woman. Joseph’s very excited about tomorrow as I’m dropping him at a friend’s house for breakfast as I have a film shoot going h in London. After school he’s being picked up by his Aunt and whisked away for his tennis lesson before spending what’s left of the afternoon with his cousin. It’s a good job he’s such a socialite otherwise I don’t know what we’d do. At GOSH there’s been a change in plan and Josh will now have his Hickman line removed and replaced with a new one under general anesthetic as the risk associated with having the infusion is too great. Other news is that we now have the BMT ground floor flat booked for half term so we can spend 9 days or so in London together as a family over half term. Whether Josh is well enough to spend time there with us is debatable at this stage, but even if he can’t it’ll mean us all seeing far more of each other. Oh, one last thing. After I left, the music therapist changed tack completely and played a song from ‘Oliver’ much to Josh’s delight and he had a fantastic session on the keyboards, drums and tambourine. Much like Oliver himself, I think he may even have asked for 'more’...
Thursday 7th October
Ah yes, the glamour of advertising. Once upon a time, shoot days began with a chauffeur driven limo picking me up from home and delivering me to Pinewood or Shepperton studios safe and sound. As writer, art director and film director, I wasn’t allowed to make my own way to a shoot as it was too big an insurance risk as filming would have to be cancelled if anything happened to me. Today I’m up at 6.30am to drop Joseph off at a friend’s house then have to drag a huge suitcase full of props to Bickley station, get on a packed train to Victoria and then hike across town to a garden flat in Maida Vale. We’re shooting an ad for a Jersey department store. It’s a nice idea and whilst I’d forgotten how paint-dryingly slow and frustrating filming can be, we do get some pretty good footage in the can by the end of the day – not that they even use cans any more to keep the film in as it isn’t even film. It’s pizza for lunch so no complaints on that score and we rattle through far more set-ups in the afternoon than we did in the morning, which is often the case. It’s still just about light when I leave and jump on a packed rush hour tube. As we’re hurtling along between Warwick Avenue and Paddington, I suddenly hear a loud, blood curdling roar. My fellow passengers are looking decidedly worried. Worse still they’re all looking in my direction because the sound is coming from inside my suitcase. The battery operated toy dinosaur I brought along as a prop and didn’t even use, must have been triggered by a fellow passenger pressing up against it and is roaring away. There’s nothing much I can do about it other than pretend it’s not me at all and appear as bewildered as everybody else. Thankfully the train empties out at Baker Street and things quieten down. I’m home by 7pm and Claire’s sister delivers Joseph to my door eating a home-made cookie made by his cousin which he declares is officially ‘ the best biscuit I’ve ever had in my whole life’. We clean out Joseph’s crickets as he’s taking then to show and tell tomorrow. This involves changing their water and mouldy fruit. Joseph lets one crawl on his hand while they’re out but complains that it’s hurting him. I tell him they can’t bite and put the other on my finger only to discover he’s right as usual and it really hurts. I’ve no idea why, but think it must have something to do with their little green feet. Josh has had another good day although he’s very tired according to Claire. Audiology came in the morning to carry out more hearing tests. His hearing loss has been confirmed as moderate to severe and is just as bad in both ears. Whether it’s permanent or not they can’t say – even though neurology told us they’d be able to. On the plus side, Josh has had hearing aids fitted and smiled as soon as they were in because he could suddenly hear people. He has very special ones that have a Man Utd logo on them and reckons I’ll be dead jealous and ask for an Everton one. Must make a note to add it to my Christmas list …
