Sunday 31st October
Trick or treat ? That’s the first thing Joseph asks me when he opens his eyes this morning. Given that he’s slept through until nearly 8am, even though the clocks have gone back, I’ve already had my treat so it’s a somewhat redundant question. He’s very excited about Halloween and will be out blackmailing neighbours and strangers for candy and other delectable goodies tonight with Claire. Before that happens we have to pack the car up with Josh’s new wheelchair and a truck load of old kids videos and books that we’re donating to the house. It takes just under an hour to drive in by which time I’ve heard the themes to Ghostbusters, The Addams Family and The Munsters so many times I’ve turned into a complete zombie. We park outside the hospital and wheel the chair up to the ward. It’s very narrow compared to the one he’s using here and a bit of a tight squeeze for Josh’s bum. He’s looking and feeling okay but very lethargic and doesn’t really want to do anything, much to Joseph’s disappointment. Claire and Joseph go off to eat while we watch yesterday’s football. By the time they’re back Josh has done a U-turn even Wayne Rooney would be proud of and decided to come to the house after all – even without the lure of £90,000 a week pay rise. Going to the house is slightly more complicated than it sounds as it means taking him down there, racing back to the hospital to pick up the car and then navigating my way around the one-way system successfully so it doesn’t take me an hour to drive what is a 5 minute walk. Josh is asleep as soon as his bum hits the sofa and while Claire sits with the boys I unload the car and then pack it up again with all our belongings and then nip downstairs to empty our kitchen cupboard. There’s certainly a lot more in there than we have at home, where we’re pretty much running on empty. Once the car’s packed and ready to go and Joseph and I have fought over the last Wispa bar in the cupboard ( no prizes for guessing who won …), we wave them goodbye and head back to the hospital where Josh suddenly gets a new lease of life. We play FIFA 10 on Playstation for about 90 minutes and he more than holds his own even though his right eye doesn’t appear to see anything in focus. Maybe he’s not using his eyes at all but relying on ‘the force’ to beat me. He reads while I tidy up the room then watches the rest of the week’s football on DVD. After all that I expect him to start fading but he eats a sizeable portion of his dinner followed by a packet of ready salted crisps and then settles down to watch Camp Rock 2, which I pretend to enjoy but I’m not sure how convincing I mange to appear. He makes it through to the end, which is more than I did as he caught me drifting several times, then decides to watch X Factor too. He’s ecstatic that One Direction are through, disappointed that Katie didn’t get voted off and wants to watch The Xtra Factor on ITV2 which I turn off after 10 minutes because it’s getting late and it’s dreadful. Joseph had a great time trick or treating but Claire made him take his mask off when he went to people’s houses just in case he scared any babies, which is no doubt politically correct but kind of defeats the object. Personally Halloween holds little fear for me as I just don’t find vampires, witches or skeletons scary. Although I must confess the thought of being grabbed by the ghoulies always brings tears to my eyes…
Monday 1st November
The first of every month is always cause to both reflect and rejoice these days. Reflect on just where the year went, as the last thing we knew it was Josh’s birthday and summer was just starting and now the leaves are falling from the trees and Christmas TV ads are on air. Every day we rejoice because Josh is still here with us and doing so well after such a terrible ordeal, even though his ongoing problems are potentially crippling. Josh is up in time for physio despite his late night and is keen to try standing up on his own from a sitting position, which he just about manages after a couple of attempts. They walk him around the bed with his junior zimmer frame and we try him in his new wheelchair which is definitely too narrow. He’s becoming more and more adept at steering it though, and we manage to get through a practice session in the corridor without running over any nurses feet. Maybe I should buy him some L plates from Halfords at lunchtime, just to be on the safe side. Once he’s back in bed, I notice a bizarre and very worrying phenomena. When I ask him to look at me, both eyes are straight and focused on me. The second I cover his left eye, the right one either looks down or swings to the right, as if it’s suddenly been shut off or closed down, and he can’t see me because he’s not looking at me. It’s a chicken/egg scenario as to which comes first. Is his brain shutting down his eye because it doesn’t work, or is his brain stopping it working in the first place ? Unfortunately nobody can tell us. Not the new doctor who is the only one on duty today and more concerned with asking questions about his stools than his eyes, and certainly not the ophthalmologists who still haven’t booked a time for him today despite the urgency. Josh and I hit the Playstation after that, racing custom super-bikes against each other one minute, and creating spells along with Harry Potter the next. Lunch arrives but some of his pasta is uncooked and once he crunches down on a bit of hard spaghetti there’s no getting him back to it. His crisps give him far less bother. When his teacher arrives, I head for Oxford Street to pick up his free Match Attax cards and try and buy him some boxer shorts as he hasn’t got any that fit. With less than 50 minutes to get there and back and eat. I end up walking through town munching a McDonalds garlic wrap and narrowly avoiding shoppers. I’ve always eaten on the move ever since I started work nearly 30 years ago. I’m not sure why, but I was never one for an executive lunch or nipping down to the pub and could often be seen pacing Covent Garden clutching a tray of chips smothered in curry sauce and picking at them with a small wooden fork . These days I’d happily sit in a restaurant on my own but rarely get the chance. There’s always something more important to do and today it’s a pants hunt. It’s strange, but for the first time in years I’m suddenly conscious of all the rubbish bins around London. Maybe it’s because the ink jet bombers have made terrorism top of mind again, but when the IRA were bombing mainland Britain regularly back in the 80’s I seem to remember all the bins disappearing from main shopping areas and stations as they were seen as potential hiding places for explosive devices. Nowadays, bins are not only back with a vengeance but even have lids so it’s even easier to hide things in them. The only dilemma facing a would-be-bomber today would be whether to hide it in the plastic, aluminium or paper recycling bin. Talk about spoilt for choice. Anyway, I manage to make it to M&S without being blown up, which is nice, but there are no pants in Josh’s size. There are literally thousands of boys underpants staring at me of every size, shape, colour and description – but nothing for 10-11 year old boys. Nothing. Zero. Zilch. Nada. Maybe they’ve sold out because there was a baby boom in London 10 years ago, who knows ? In the end I have to settle for 11-12 year old slips rather than boxers and hope they fit. The whole trip takes just 45 minutes and I’m back just as his teacher leaves. Josh wants to sleep and, given how unhelpful Ophthalmology are being, it’s probably the best use of his time. They wanted Josh to go down and have eyedrops put in to dilate his pupils and then stay down there for up to 4 hours to see if the professor, who was late for his clinic, can spare the time to see us. If not, we’d just have to come back up here at the end of his clinic and do it in a week when he’s next in. It’s shocking behavior and the nurse fights our corner brilliantly. I say nurse, but she’s a healthcare assistant and therefore carries little kudos in the hospital, even though she’s been exceptional since day one. Whoever is on the other end of the phone has no idea what rank she is, but assumes she’s very senior given her tone and finally agrees for us to put the drops in up here and for them to come up and see us although they can’t even give us a approximate time. Finally, the mountain is coming to Mohammad. Unable to do much other than wait, Josh and I watch the top selling music videos of the year on 4 music and he’s singing along in no time without a care in the world. At 5.45pm, some 3 hours and 4 phone calls later, ophthalmology finally turn up. Josh hasn’t had a bath today as we had no idea when they were coming and he’s desperate to see Toy Story 3 which is being shown in the building across the street in a lecture theatre at 6.15pm. The Professor has a miner’s style helmet on with a lamp attached to his forehead and carries out a series of quick tests which become more and more worrying by the minute. Eventually he darkens the room, covers Josh’s left eye and shines a light directly into his right. Josh can see nothing at all. Not even a hint of light. He would appear to be completely blind in that eye. My heart is in my stomach. It’s then explained, very matter-of-factly as if I really should have known all along, that the virus that caused his encephalitis has completely destroyed his retina. When I ask if it’s reversible, I’m told it’s not. They will have to restart him on the anti-virals he was taken off a few weeks ago in order to try and save his other eye. They may have to inject them directly into his retina. I feel as if I’ve been punched in the stomach by Mike Tyson wearing a lead boxing glove. They believe the virus that caused the damage is the chicken pox one as there are cases of it happening before, although it’s extremely rare. When I ask about JC, they don’t appear to have even heard of it, but promise to look it up and see if it could have been the cause. The reason I’m pushing them on this is that if it is the JC, my guess is that the anti-virals won’t do any good. They will keep a close watch on his good eye to see how it develops. I insist they come up to see him rather than we go down there again and they agree. It’s 6.11pm and Josh is desperate to see the movie. It could be the last one he ever sees, so as soon as they leave I lift him into his wheelchair and pack a bag with his glasses, hearing aids, drinking water, straw, sick bowl, wee bottle and pull-ups and we’re off. Throughout the examination he was amazing, only crying out once when the light was far too bright for his good eye. I explain in simple terms what they said and stress that his other eye is absolutely fine, they just want to make sure it stays that way. It’s not strictly true, as the Professor spotted something in that one too, although he said it was unrelated he didn’t elaborate. Josh just says ‘ If it happens to my other eye, I’ll be blind won’t I Dad ?’ I’m about to crumble inside and out but manage to bite my lip and say that I really don’t think it will come to that in my happiest, devil may care voice. Josh seems to dismiss it from his mind as we cross the road and I wheel him into the theatre 30 seconds before the film starts. He’s only wearing one hearing aid but says he can hear the dialogue. I’m not completely convinced but leave him be. He appears to be enjoying it, but can’t concentrate on anything other than the news I’ve just had. It’s not helped when Mrs Potato Head loses her right eye early into the film and spends the next 90 minutes wandering round without it. In the last 5 minutes, she finds it and just pops it back into the appropriate hole in her body and ‘Voila !’ full sight is restored. If only life was that simple. We’re back on the ward just before 8pm and Josh is asleep soon after. I’m tempted not to call Claire, but tell her the news tomorrow at Tadworth when we’re face to face and I can be there for her, but I’m not sure she’d forgive me. In the end I phone her from the playroom and tell her straight away that it’s not great news. She’s crying before I even start to explain just how bad it is. Joseph hears her crying and immediately worries, so she has to explain what’s happened to Josh and he just breaks down, saying ‘my poor brother,’ over and over again between his sobs. I try and console him by explaining Josh is no worse than he was last week when he saw him, but I’m not sure if that’s true or not. He was at least able to make out blurred shapes then from what we could gather. Whatever has happened has happened so fast it’s unbelievable. I tell Joseph to shut one of his eyes and to see how little difference it makes and he seems to calm down a little. Quite what all this means, I have no idea yet. How rapidly could it spread ? Will his eye always face outward now ? Will he be able to gauge distances ? Will he be allowed to drive ? Will he ever be able to see a 3D movie ? So many dumb, stupid questions are reeling through my mind, not least what would have happened if we hadn’t spotted it or if BMT had reacted quicker when we did, or more to the point, could his sight have been saved if ophthalmology hadn’t dragged their feet so much ? We always look for people to blame, it’s human nature. Only the other week I found myself getting angry over the 7/7 bombings because I think it’s appalling that we’re trying to pin the deaths of those killed on that terrible day on the emergency services and the tube controllers rather than the bombers themselves. Questions have to be asked, however, and people do have to be held accountable if they failed to spot early warning sign or ask the right questions. In the meantime life goes on and we just have to pick ourselves up off the floor again and get on with it like Josh always does - with pride, dignity and a bright, shiny innocence that never ceases to humble us all.
Tuesday 2nd November
At 10.45pm, Josh calls out to me because he needs a wee. As I approach the bed I can see him grinning away. He’s got the song ‘ Keep Bleeding’ going round and round in his head and is singing along to it quietly under his breath. I’m guessing it’s because Matt sang it on X Factor on Saturday, or maybe he even heard Leona singing in on the Top 100 yesterday. Either way, it’s a joy to see him so seemingly unaffected by what’s happening and it gives me strength. Twenty minutes later I nip down the corridor to the loo and hear a young child screaming at the top of their voice on my way back. As I get nearer our room, I suddenly realise it’s Josh and break into a run. He’s woken up desperate for another wee and I wasn’t there. It takes me 5 minutes to calm him down, dry his tears and blow his nose. I just want to hug him so tight and never let go. It’s moments like this that show you just how vulnerable and helpless he really is, despite his massive strengths and astonishing courage. I don’t sleep well, although he appears to which is all that matters. He wakes at 7am and I sit him on the commode. He rarely complains, always smiles and is so unbelievably polite he could have stepped straight out of ‘The Waltons.’ I have to leave before he wakes again and head off to London Bridge to catch a train to Tadworth. One of his favourite nurses is looking after him until Claire comes back in the afternoon, so hopefully he’ll be fine. He knows I’m going and said he was okay with it but his face dropped when I told him. I make the 9,20am train with 20 seconds to spare and head out into the heart of the countryside. Tadworth is a quaint, sleepy village in deepest Surrey. It said on the internet that there are 3 separate shopping areas here, but it didn’t tell you that they each comprise of about 4 shops. It’s like a village from yesteryear, with proper shops like a greengrocers, a butchers, a fishmongers and bakery but very little else. There are a couple of restaurants and a nice café, where the Surrey blue rinse brigade lunch and not a Starbucks or McDonalds in sight. I wander around to get my bearings for a few minutes then head over to the Trust centre which is a fair walk away. Once I arrive, I announce myself and then head for the café – sitting in the grounds with a hazelnut and chocolate milk. Claire’s left me a message to say she’s lost. She’s tearful and upset, but that’s more likely down to yesterday’s news than her current predicament. I step outside onto the main road to wait for her and to ensure she doesn’t miss the turning into the grounds. Twenty minutes later than scheduled we begin our guided tour. It’s a truly wonderful place. Pitched somewhere between a school, a hospital and a home, we have no trouble imagining Josh slotting in here. The children have their own bedrooms, bathrooms and personal space and independence is encouraged. Parents are NOT allowed to sleep in the room with their children but can stay in their as long as they like and then have onsite accommodation. In time, and with health permitting, we’d envisage him staying here during the week with one of us and coming home at weekends. There are beds available, so it’s all in Bromley council’s court now to fund it. Claire and I are both teary eyed walking round as we haven’t even had a chance to hug since we heard the terrible news. Tears had started flowing for me early this morning when I was talking to the nurse looking after Josh and it’s hard to keep them back when we finally catch up for 30 minutes at a café in the village. The only café in the village to be precise. I drop her at the station two minutes before her train back to London, but after a 27 mile, 39 minute journey home I pick up a message to say her train was cancelled and she had to wait 30 minutes for the next. Just time to unpack before picking Joseph up from school. For once, we manage to eat before swimming so he can play longer with his friend afterwards but, sod’s law, he ‘s not there today so I have to do my best to amuse Joseph from the side of the pool for 30 minutes without actually falling in. After a quick shower, a Wii session and a story he’s fast asleep and I catch up with Claire for the second time today. She’s just finished stroking Joshie’s head as he’s complaining of more headaches and his right eye is hurting him. He’s starting to talk about his eye more and told her ‘ Mummy, I’d love it If I could see out of my right eye again.’ He knows it’s not going to happen and she explains it again. She can see him lying in the dark covering one eye then the other to see how it affects his vision. How terrifying must it be to cover one and find everything is plunged into darkness ? How do you even begin to deal with that– especially after making such a miraculous recovery ? It’s so tragic - like being shot with the last bullet of a war. Claire had an hour long meeting with all the BMT doctors this afternoon because it was ward round and they were all in. It wasn’t an easy meeting and it’s awful that she had to do it alone. She was calm and collected but talking through tears much of the time. To try and save his left eye, they will have to perform a biopsy on his right eye as soon as possible so we know what we’re dealing with. Ophthalmology still believe it’s the chicken pox virus that did the damage as there are no known cases of JC virus destroying retinas. The VZV virus had disappeared previously, but may have come back because he was taken off his anti-viral drugs 3 weeks ago due to potential renal problems. Unbeknown to us they have tried to get him back on them 3 times but each time his soaring creatinine has stopped then doing it. Viruses usually attack both eyes at once causing blindness in both, so we can only hope that having just one affected at this point is a good sign, The spot in his left eye is typical of hypertension and nothing to worry about for now apparently, although we’ve heard that one before. Claire wants me to be there with her tomorrow. She’s badly in need of a big hug and so am I, but Joseph and I are booked in for flu jabs which means I could only be there for an hour or so and we can’t find a practical way of making it work. Going through this alone makes it so much worse because our greatest strength is each other. It’s early morning before I’m in bed, but I enjoy the best night’s sleep I’ve had in months. My first waking thought is that Josh is still half blind, in the same way it used to be that Alex was dead. The worst nightmares are the ones that start rather than stop when you open your eyes…
