Sunday 24th October
It’s grey skies over London this morning, but Joseph wakes up chirpy which is all that really matters. We nip across the road for a Sunday paper then sit down to breakfast. As usual, whilst the rules on washing dishes are clear, most of the parents choose to ignore them and there’s a heap of dirty plates and pans stacked up in the sink. I resist the temptation to tidy up and just make sure our bowls are washed, dried and put away. Guilt free, Joseph and I set off for the Natural History Museum. I was expecting queues but not as early as Russell Square. Where do all these people come from ? Tourists must stagger out of Euston station with huge rucksacks on their backs and book into whichever hotel they finally keel over outside. Look carefully around the area and you might see them lying on their backs, arms flailing to try and right themselves again, like upturned tortoises. Luckily Joseph and I notice a ticket machine with nobody on it and pounce. The NHM is far less crowded. Having run their advertising account for nearly 10 years, I know the quietest way in and we rapidly make our way to the dinosaurs. Joseph is slightly underawed when he sees the moving, animatronic T-Rex and he’s got a point– it’s neither as big, scary or loud as I remembered it. The rest of the museum is the equivalent of a candy shop for him and he more than gets his fill of stuffed animals over the next two hours. Unlike other children, who stare and point and say ‘ Look at the snake’, Joseph likes to refer to each species by name. ‘Look at the Black Mamba / cottonmouth / spitting cobra – delete as applicable. He then goes on to tells anyone within earshot where it lives, what it eats, how it moves and which hotel it prefers to say in when it takes a two week vacation. Talk about attention to detail. On the way out he tells me it’s been the best day of his entire life, which is wonderful but leaves me wondering how we prevent the rest of the week being an anti-climax. We’re back just before 1pm and Josh is still asleep which means Claire can join us for lunch. We go to Nando’s, which might not sound all that exciting to you, but is probably only the second or third time we’ve been out for a meal in a restaurant together in over a year and almost certainly the first time we’ve had Joseph with us too. Even shopping in Gap Kids feels new and exciting because we’re all in there together. If Josh had been with us too, we’d probably have all been kicked out by security for acting suspiciously and being far too happy for normal shoppers. Joseph and I have bets on with mum as to whether Josh will be awake when we return and the boys are victorious. Not only is he wide awake, he’s sitting up watching the Grand Prix on TV. Which one, I have absolutely no idea as I have never had any interest in watching cars driving round and round and round a track. This has made me pretty much a black sheep as I come from a family of car fanatics. It’s sunny as we get Josh ready, wrap him up and pack all the special supplies we need at the house to ensure a trouble-free afternoon. The living room’s empty so we stake our claim and put the TV on. The boys sit together on the sofa and watch Johnny English which makes them both smile, although we have to deafen the rest of the house in order for Josh to hear the dialogue. He tucks away a small bowl of pasta again and I transfer him back to his wheelchair for the trip back to the ward. Joseph and I eat and enjoy a bath together before climbing into bed. He’s had a good day and appears to be fine after yesterday’s blip, but it still takes him nearly two hours to nod off. Determined not to fall asleep next to him, I somehow manage to do enough work to save my blushes before finally succumbing sometime after 2am.
Monday 25th October
Like on all good holidays, time is standing still at the moment. Not that I ever have a clue what day it is anyway. It really feels like we’ve all been down here in London for weeks, whereas in reality it’s just two days. We’re up far too early and after breakfast take a short hike to WH Smiths to collect free Match Attax cards for Josh. Joseph gets a couple of Deadly 60 packs too, so he doesn’t feel too left out. David Attenborough, your successor is here and ready to usurp your throne any day now. Back at Gray’s Inn Road. I have a chat with the house manager and tell her the excellent news that our 10km running friends not only completed their ordeal, but managed to raise over £1500 for the Sick Children’s Trust. A big thank you to them both, and of course, to all those of you who sponsored their endeavours. She is delighted with the news and when I suggest we try and make the donation exclusive to her particular house she’s even more delighted, as boy does it need it. The two London houses are not only more expensive to run than the others around the country, but they tend to get far lower donations as, being a sprawling Metropolis, London lacks a community to get rally around their cause. I’d never thought about it, but the house is full of people from the length and breadth of the country and indeed, many other countries, which means people are less likely to champion their cause. Josh is wide awake when we arrive and raring to go. We make do with the playroom, but after an hour he returns complaining of headaches and feeling nauseous. He feels better after eating, but vomits it all back shortly afterwards. He did the same last night according to Claire. Gym is cancelled as he doesn’t feel up to it, although he and Joseph have such a good time I’m left feeling slightly duped. Claire’s out buying dinner and a new DSi for Josh’s is on it’s last legs, Just don’t tell Joseph as this means he’ll inherit it soon. A nurse and one of the doctors from Tadworth have come to see and assess Josh today. It is a rehabilitation centre out in Surrey for children with multiple disabilities including brain injuries and, in most likelihood, Josh’s next step on the road to recovery. They have had many written assessments regarding Joshua from a number of different sources but need to discuss his needs and complexities firsthand with the doctors here and ourselves before meeting Josh and making a final call on what is best for him. The doctor tells us he is half-italian, I’m not sure what the other half is but I’m guessing it’s not English based on his accent. We both like his and he paints a realistic picture of how slow progress will be in order to ensure it’s real progress. We are talking about us living at the home for a minimum of 6 months, which is pretty much what we’d steeled ourselves for. Whilst we’ve all been talking, Josh and Joseph have been playing in his room with one of the nurses and a play specialist. Josh is in a buoyant mood when he finally meets the Tadworth representatives and they appear genuinely astonished at how well he’s doing, given his history. High point of the assessment was the doctor asking Josh to touch his nose with his index finger and then to do the same again with his eyes closed. English obviously isn’t his first language and when I notice Josh inserting his fingers into his nostrils every time he repeats the action I have to point out that he is mistakenly asking Josh to put his fingers IN his nose rather than on it. The doctor is very apologetic but then repeats his mistake with Josh duly repeating the action of putting his fingers up his nose as if he’s gripping a bowling bowl. Thankfully the test stops before Josh has a chance to fling himself down an alleyway and score a strike. Finally we’re off to the house once Josh has vomited again, something he manages several more times before we return around 6.30pm. Josh is tired, but more worryingly, his right eye is slightly askew again – just as it was before, during and after the worst stages of his encephalitis. As a result of us pointing it out, they need to check his neurological responses every 2 hours by shining a light in his eyes to measure how quickly he responds. His right eye is currently slower than his left once again. To make matters worse, he can’t seem to sleep and is complaining of a terrible itch all over his body. There’s no sign of a rash, but even IV Piriton fails to alleviate the problem. He’s tired and frustrated and it’s approaching midnight with no sign of any let-up in sight. It is so not fair.
Tuesday 26th October
Josh eventually settled, but it couldn’t have been easy as we had neurologists and doctors coming and going for most of the night. I’m told they’re ‘worried’, which isn’t a great word to hear, hopefully ‘overly cautious’ is a better one. Okay, it’s two words but you get my drift. I’d rather they’d left him to sleep to be honest as, regardless of how he responded, they were never going to actually do anything overnight. CT scans were mentioned and he’ll probably have one today to rule out anything new developing such as a bleed or fungal growth in his brain. Claire and Joseph arrive in good time for Josh’s gym session, which I was having trouble rousing him for. He’s far more keen to go with Joseph in tow, who has agreed to be his personal trainer for the session. It’s all going swimmingly for 10 minutes, then we get a call ordering us back to the ward as they’ve found him a slot for an MRI. We offer to go straight there to save time, but the doctor is insisting we return to the ward first. Quite why is anyone’s guess as we meet him in the corridor outside Fox only to turn round and head back the way we came for the scan. They’re giving Josh a general anesthetic to make sure he neither panics or moves during the procedure. While he’s under they’ll try to do another lumbar puncture as the last one was unsuccessful. Claire wants to go down with him, so Joseph and I head off to the playroom to twiddle thumbs together on the gamecube until he returns to the ward, a little groggy and a lot miffed. He just wants to sleep and I run back to the house to pick up documents I need for work while Claire and Joseph make and then decorate the room for Halloween with pumpkin paper chains and bat stickers. Poor Josh is going to open his eyes and think he’s woken up in Hell ! He doesn’t actually wake for another couple of hours which is fine as I need to work in the room and it means Claire and Joseph can head off for lunch and then make their way back to the house. Josh is given several examinations while he tries to sleep. The first is worrying as he appears to be seeing very little out of his right eye which is still a very squinty. The MRI shows nothing new or alarming but the doctors will have to compare it to previous scans before reaching any firm conclusions. His bloods are good at the moment , so it’s unlikely his encephalitis is coming back. Not that it’s gone away yet anyway. As for his eye, it’s still responding very slowly and turning out again. It may not be a neurological problem as it’s a possible side effect of one of his drugs, which they’ve now stopped. Josh isn’t out for the count as long as expected and is desperate to try out his new Nintendo DSi. There are two camera built-in which means you can take pictures of yourself one way, or someone else the other. Josh’s first photo is of himself, his second of the doctor who comes in to examine him. It’s a good pictuure, made infinitely better when Josh starts distorting his features with the stylus. He ends up making him look like a cross between Quasimodo and Wagner off X Factor – a definite improvement to be honest. It’s early evening before Claire and Joseph return. I’m working again tonight, so I have to take Joseph back to the house almost as soon as he arrives. Both our boys have been absolutely magnificent again under difficult circumstances. Our day was turned upside down when Josh had to go into theatre at such short notice and yet neither of them has uttered so much as a word of dissent. Once I’m in bed, tiredness begins to take its toll on me, but with three different jobs coming to a head tomorrow, sleep is out of the question this side of midnight.
Wednesday 27th October
Today needed to be an early start but not quite as early as 5am, which is when Joseph woke up asking to go to the hospital to see Josh. Given that I didn’t get to sleep until 4am it didn’t make him the most popular person in the room - or the bed for that matter. Nevertheless, I manage to keep him entertained until breakfast and we set off soon after that. Not surprisingly, Josh is fast asleep when we arrive, but Claire’s up and dressed and I leave Joseph with her before sprinting across town for a voice over session at 9am. By the time I make my way back, Josh’s best friend, Nick has arrived. It’s a shame to have missed most of it, including his best ever session in the gym as he no doubt wanted to show off. Once his friend’s gone, we manage to keep him awake long enough for a short OT session followed by speech therapy but he wants to sleep after that and does. As a result, Claire and I actually get a few minutes to talk to each other. This has happened far less since we’ve been moved to London than it did when we were apart – probably because we don’t phone each other when the children are asleep. She tells me that Josh’s MRI shows a little more fluid in his brain than last time and more white matter than before, which could be down to scarring in the brain as the inflammation slowly retreats. It’s unlikely either of these factors are affecting his vision but they will keeping a close eye on them nevertheless – forgive the pun. Just as we’re trying to decide what to do with ourselves next, we get a text from a friend with 2 spare tickets for Disney on Ice at the O2 starting in around 90 minutes. It’s too good an offer to say no to, although Joseph takes some persuading to begin with as he thinks he may be a little too mature for it – bless him ! Claire has to stay with Josh as she has relatives coming down, so it’s me that gets to accompany Joseph We set off so quickly I forget to take him to the toilet, which means he’s desperate by the time we reach Goodge Street tube station. Luckily there’s a Starbucks next door where we cunningly pretend to be interested in buying a couple of pastries before sneaking into the loos when nobody’s looking. Then it’s down to Waterloo and off on the Jubilee line to North Greenwich. Joseph is fascinated by Canning Town as it’s spelt the same way as his name and imagines that it’s a whole city full of people that look just like us. A scary thought. We arrive in plenty of time, grab a couple of sausage rolls and wind our way across the heaving entrance hall, carefully avoiding hundreds of little girls dressed as Disney Princesses, to meet Mary, the ticket fairy at the entrance to the VIP section. We’re in great seats and Joseph loves it as it’s packed full of somersaults, back-flips and explosions . There’s even a huge shark skating around at one point chasing a woman dressed as a clown fish which was so surreal I thought I was experiencing one of Josh’s hallucinations. During the half time interval, we venture downstairs to meet our benefactor only to discover she’s already been to the bar and there’s an ice cold beer waiting for me. Having not had a drink at lunch time for many years, I’m a little worried I’ll either fall asleep or start singing along to ‘ Someday my Prince will come.’ To make matters worse, she hands me a glass of wine just as we make our way back to our seats . The second half is better than the first with far less Princesses on show and Joseph is blown away by the fighting in Mulan – even though it’s a girl wielding the sword. We leave just as Mickey takes his final bow and are on a train just a few minutes later, before the station’s had time to fill up. Changing at London Bridge onto the Northern Line and at Bank onto the Central Line, means we avoid the rush hour crowds and we’re back at the hospital in just 40 minutes. A few minutes later I’m rushing across London just in time to make a film shoot in Soho. I arrive in one piece, despite a somewhat overweight cyclist nearly mowing me down as he careered down a one way street the wrong way, and spend the next hour filming a 12 year old boy lying in a gutter for the Railway Children charity. It’s a year since we made the previous commercial for them and what a year it’s been. Josh had just had his bone marrow transplant then and has since spent six of the last 12 months in hospital. Where does the time go ? All appears to go well and I’m back at the hospital before 8pm, just as Claire and the boys emerge from the playroom. After helping Josh up into bed, I whizz off again with Joseph and back to the house. Joseph sprawls out in the middle of the bed and tells me he’s not shifting, but once he gets a sniff of my smelly armpits he rolls back over to his side. They don’t normally whiff, I hasten to add, but I’ve been running around so much today it’s hardly surprising. Joseph is asleep in seconds, either that or he’s passed out due to the smell…
Thursday 28th October
As soon as we’ve had breakfast, I go to see the house manager to let her know the internet’s down and she reboots the system. It’s up and running in no time and I manage to send off all the work I did last night just before the deadline. No doubt inspired by my smelly armpits, Claire is planning on doing some washing back at the house today and Joseph and I nip across the road to buy washing powder and fabric softener. I actually have a few clean clothes left, but Claire’s talking no chances. After that Joseph watches TV briefly while I download a photo file onto the house manager’s computer, so the Sick Children’s Trust can use our story to try and raise funds. It costs £77,000 per annum to keep the house open and over 300 families stay there every year. I’m not that keen on having photos of us splashed around, other than on this site obviously, but they let you know how and what they’re being used for and we can always say no - so you won’t suddenly see Claire’s picture in a phone booth advertising ‘ special massages’ unless she’s put it there herself and our finances are in worse shape than I thought. At the hospital, the doctors feel Josh’s eyesight is a little better today, although if anything his eyes are even more off kilter. Even Joseph’s told him how big his eyes are. Fortunately Josh didn’t reply ‘All the better to see you with.’ and try to gobble him up. Apparently there have been a few cases of children reacting the same way to the drug he’s on. A number of them have had drug patches on their neck, like nicotine patches, and have burst their pupils after touching the patch and then rubbing their eyes. Thank the Lord, we spotted it early. Josh is tired and doesn’t attempt anything too complex at the gym, although Joseph is far less restrained and tries to play basket ball with a pilates ball which causes all kinds of havoc. Back in the room the boys get a visit from an old luvvie of a teacher who starts telling them stories in a Shakespearian actory kind of way. The boys are captivated and sit giggling and gasping for nearly an hour while Claire and I catch up in the parents room. There’s an opportunity for us to visit Tadworth together next week, although it would mean one of us driving from home and the other taking a train from London Bridge. It’s going to be tricky to organize, but with Claire on the case I’m sure it will be fine. At around lunchtime, Claire and Joseph head off to the Science Museum while Josh plays football on Playstation for the first time in 4 months. He’s ecstatic even though the game appears to be mute. Thinking it may be my hearing, I ask him if there’s any sound to which he replies.’ I don’t know Dad, we’re both deaf.’ Fair point. As it turns out it’s not us but a broken volume knob on the TV. Josh loses most of his games against the computer, which is hardly surprising as he’s not match fit, but it won’t be long before he’s back on form. I’ll be bringing an extra controller down on Sunday, so he can start thrashing me again. All hell breaks loose an hour later. I’m needed in Soho to look at an edit at the same time ophthalmology call to tell us they’d like to see Josh. It’s no contest, but once we’re down there it soon becomes clear there’s something terribly wrong. We see one consultant after another and they all appear baffled. Josh doesn’t appear to be able to make out anything but shapes with his right eye and has several blind spots. Even his good eye struggles on a colour test. He’s left sitting in his chair for over 90 minutes, by which time he’s crying out with pain from his back and bottom. Just as we start to leave as there’s nobody there and he needs a poo, the top consultant turns up and is gracious enough to scuttle alongside us as we head towards the lift. From what I can gather a virus is affecting the back of his retina. Whether it’s the JC virus or not is impossible to say. Whether it’s reversible or not is anybody’s guess, although in theory it could spread to the other eye if left untreated. He tells me there are things they can do to help improve it that involve needles and eyes but that I’m better off not knowing at this point. Given that Josh is crying out and desperate for the toilet which is still at least 5 minutes away, elevators permitting, I don’t ask for any more details and literally run off – possibly setting a new land speed record for wheelchairs in the process. We arrive back in our room just in time and I lift Josh onto the commode by his bed which uses now he’s more mobile. We were just in time. As I transfer him back to bed I tell him to lift his legs up in a loud voice as he’s so deaf, but he thinks I’m shouting at him and the tears that he’s been holding back for the last few hours come pouring out. Joseph arrives back at that exact moment and starts to cry too. Then, while I’m explaining to Joseph how upsetting it is to see somebody you love cry, I start to waiver as well. By the time Claire walks through the door we look like a family of professional mourners. Once we’ve all cheered up again, I disappear back to the house to download and view the edit I missed, which still needs some work and will need thinking about tonight. On the way back I pop into Nandos for a take away and miss a call from my Dad’s mobile, which is a shock as he’s never used it before and I didn’t know he could. At 91, he remains an extraordinary and hugely inspirational man. He was our rock when Alex was dying and I’m not sure how I’d ever have coped without his calm, friendly voice at the other end of a phone. Even though we haven’t been able to travel up North very often over the last few years, the boys adore him and he’s often in their thoughts. He’s currently on one of the same drugs as Josh and weeing so much he’s thinking of having a lemonade sale. Whilst he and Josh have so much in common at the moment, they’re both too tired to say much to each other and it’s left to Joseph to seize the moment, and the phone, and ask just how many wees Grandpa’s done today. He appears suitably impressed at the answer which is 12, even though it’s less than half what he managed the day before . With Claire and Joseph back at the house and Josh fast asleep, I do an hour’s work in preparation for a voice over and re-edit in the morning before climbing into bed. Josh only needs changing once in the night. I have this habit of kissing his knee after I’ve finished, just so he knows I’m fine with him waking me and that everything’s done. Tonight I do it just as he changes position and he nearly knocks my teeth out which he thinks is hilarious…
Friday 29th October
I haven’t caught up with the news for a while. Are the firefighters still planning a strike on November 5th ? On the day of the last strike, staff here had to remove all the fuses from the toasters here just in case someone started a fire that couldn’t be put out. They still haven’t been put back in, so toast’s off the menu here at GOSH - which is a shame as it was pretty much the only thing on the menu. Josh had a good night’s sleep and so did I. Claire and Joseph are here for 8.30am so I can race across town again. Luckily she remembers to bring my trousers with her, so I don’t have to run through the streets of London wearing my blue, checked pyjama bottoms. Work goes well and I’m back just after 11am. Claire’s looking after Josh today, so Joseph and I head off to the cinema to see ‘Legend of the Guardians: The Owls of Ga’Hoole’ in Leicester Square. Thinking it’ll be packed as the schools are on holiday and it only opened today, we book tickets first. For an adult and a child it’s just £29.95 which includes our 3D glasses which we get to keep. At that price I’d have hoped we could take several owls home with us as well, but apparently not. We just have time to visit a steak house and share a medium rare Rump and fries with garlic sauce. It’s delicious but costs about the same as the cinema tickets – the glasses aren’t included here, although we do get free straws in them. The movie’s good and Joseph’s enthralled from the start. The 3D effects are so realistic I’m coughing up mouse fur pellets long after it’s finished. There’s a funfair in the square and Joseph asks for candy floss. By the time he finishes it, there’s so much stuck to his chin he looks like Billy Connolly with his long pink beard. On the way back it starts to get breezy and Joseph breaks out into a chorus of ‘ Windy hair, windy hair…’ to the tune of the Go Compare ads which has me laughing all the way back to the hospital. Josh hasn’t had the best of days with ophthalmology keeping him waiting for two hours before realising there’s nobody there skilled enough to operate the equipment they need to perform the first series of tests on him. They’re now planning on doing them all on Monday, but Claire has a feeling it’ll prove far too much for him and I’m sure she’s right. She usually is. It’s nearly 5pm but we still take Josh back to the house where he sits and watches a movie with Joseph and eats sausages and baked beans. The sublime look on his face as he tucks in had to be seen to be believed. He goes straight to sleep once we’re back on the ward and I manage to update the blog before steeling myself to work and then realising I don’t have any more to do. Oh happy days ! Or nights as the case may be…
Saturday 30th October
The plan today is that I take Joseph home on the train and we spend the night there. It gives me a chance to put some of the 80 hours of TV we’ve no doubt amassed on our V+ box onto DVD’s for the hospital. Hopefully, we won’t have been burgled by someone who reads the blog and knows we’ve been away, otherwise I’ll be requesting fingerprints and DNA swabs from all of you. You have been warned. Tomorrow we’ll drive back to London with Josh’s new wheelchair in the back and Claire will take all our stuff back from the Sick Children’s Trust house as Joseph’s back at school on Monday so we have to move out. Josh doesn’t even look like getting up this morning, so while there’s a natural lull, here are a few things I may have forgotten to tell you. There was a diesel spill in the basement here a few weeks ago which meant all the wheelchairs and related physio equipment had to be deep cleaned or whatever it is they do to make them germ and presumably fume free. This is one of the reasons why we’re bringing Josh’s newly delivery wheelchair up from home – so they can pass his on to another child. The ‘entertainment systems’ in the room continue to be a constant source of puzzlement with no internet still and very often no TV. At one point the Dubai channel appeared to take over BBC 1, which was a little worrying as we thought our license fees might go up and we’d be restricted to watching ‘ Middle East Enders’. With so much going on this week, Claire only just got around to telling me that Josh’s lumbar puncture showed no sign of the JC virus in his cerebral fluid which would have been fantastic news if it hadn’t been counterbalanced by the devastating news concerning his eyesight. Claire had a hint of a cold yesterday and chose to wear a face mask for most of the day while made her look a little like Daisy Duck, although she wore it with enough style and panache for it to become all the rage in Milan and on the catwalks next season. Oh, and while Joseph and I were tucking into the world’s most expensive rump together yesterday, an elderly lady on the table next to us stopped me to say what a handsome, beautifully behaved boy I had. Hear, hear ! Back to the present and even when Claire and Joseph arrive, Josh doesn’t really stir much. I nip out to pick up his free football cards and binder from WH Smiths, stopping briefly to buy a travelcard to get home on before the tourists start to flock around the ticket booths and the machines and to pick up a sandwich so Claire can take Joseph out to lunch before we set off. It’s weird being home after nearly two weeks away. it’s that old familiar, yet somehow unfamiliar feeling you get when you walk through the front door after a two week vacation. I can’t imagine what it will feel like for Josh when he finally steps over the threshold again – whenever that might be. There’s so much to do before the morning that I hardly know where to start, but by the time it’s all done and Joseph’s snoring away in our bed I’m looking forward to a rum and coke and a nice long soak in a bath that I don’t feel like Peter Crouch in when I stretch out…
