Wednesday 3rd November
It’s hard to find either the motivation or the strength to write today, but here goes. For me the day was all chores and a few work phone calls. After hoovering up enough leaves from our drive and garden to create a small Continent, I disappeared off into Bromley to price FIFA 11 as Josh is desperate for it and if we’re going to get it for him it should be now - just in case he loses his other eye and can never play or see anything ever again. The last few days have been so devastating, it’s difficult to face anyone at the moment and I do my best to avoid answering the phone or bumping into anyone who might vaguely recognize me and ask how Josh is. It’s not a problem if they do, it’s good to talk sometimes but it wears me out emotionally if it’s one person after another. Today the balance is just about right about it helps to talk. The only thing of any note at home was that Joseph and I had our flu jabs. We all have them once a year so Josh is less at risk being around us. Joseph is normally fantastic and hardly flinches but he cried this time. He’s been very upset by what’s happened to his big brother and has every right to teary. Josh had a biopsy on his right eye today. He came out of the anesthetic kicking, screaming and shouting and Claire was in the direct line of fire. Sometimes a GA makes him aggressive. He always apologizes afterwards, so it really is as case of being under the influence – so to speak. He’s wearing an eye-patch for the next few days and gradually getting used to the feeling. We can expect the right eye to be bloodshot for the next month or so following the procedure. At a later date, should all go well, surgery can correct his squint but it’s the least of our worries right now. Both eyes were photographed and his good eye looked okay with no noticeable signs of a virus and just one spot on it from a burst blood vessel – probably due to his low platelets or high blood pressure. It’s good news rather than bad but means nothing as it doesn’t tell us what’s happening behind the eye. Claire’s been watching Mad Men to escape the madness. Television fills a void for both of us as it’s the only way we can actually switch off and relax. I saw the last two episodes of Dexter Season 4 last night which were phenomenal, but it’s a bit of a worry that I’m watching a series about a serial killer for light relief…
Thursday 4th November
Having two full days at home is a novelty and makes a real difference. Instead of charging around like a mad bull, I actually get the chance to slow down a little and end up getting more done. A trip to the dump, a visit to the gym and another shopping expedition in the morning mean I’m busy enough and there’s actually food in the house for a change. I even have a haircut, forgetting that Josh is having his done at the same time by one of his Aunties. Claire sends photos of his curly locks disappearing and I send one back showing mine. Peas in a pod. The other thing I have to sort today is mice. They appear to have ignored current property market trends and moved into our loft space over the summer house. There are no tell-tale droppings or signs of chewing but I caught a glimpse of a furry friend disappearing under the rafters when I went up there looking for Josh’s old school clothes for Joseph. Unsure where our old mousetrap is, I managed to track a new one down in Bromley. They’re harder to get hold of than the mice, but I eventually found a shop that sold a set of 6 for £1.20. Despite their bargain basement cost the traps appear to work well as my left thumb can testify, having caught it when I tried to set the first trap. Ouch. Joseph is fascinated to hear about all this when he comes back from school and insists I check them to see if we’ve caught anything yet. All the cheese has gone but none of the traps have been sprung. We’re obviously dealing with a new breed of super intelligent mice here who weigh far less than my thumb. Claire’s breaking news is that the results of Joshie’s biopsy have come back far earlier than expected. This is presumably because they were so conclusive. Whilst we have no idea how the figures are calculated or what they mean, they found evidence of the JC virus behind his right eye and the count was 30. A similar count for the VZV virus ( chicken pox ) was over a million so there’s little doubt what blinded him. What will happen next is anyone’s guess. The ophthalmologist explained to Claire that by the time his squint appeared, his retina was already beginning to peel off so there was no hope of saving his eye. This raises several interesting questions because we weren’t told this for another 4 days and had been led to believe that they would be treating it. Once Joseph’s asleep a late job crops up that means working tonight rather than relaxing, which is fine, although it’s gone 4.30am before I finish and Joseph’s awake by 6am. Whoopee !
Friday 5th November
Remember, remember the 5th of November. I’m not likely to forget it given the appalling conversation I just had with one of the Ophthalmologists here. They are the rudest department in the hospital by a country mile and there were some real fireworks going off in our room, I can tell you. The day started well enough. Josh was sitting up in a chair playing Playstation when I arrived at the hospital and looking so much better with his new hair. Ward round was difficult but reassuring as always, as you never question the dedication of the team and the bedside manner of the main consultant is top notch. There are many unanswered questions simply because there are no answers. The biggest question is whether we pre-empt the possibility of the virus striking and inject anti-viral drugs into Josh’s good eye, or play the waiting and hoping game that it doesn’t strike and that we’ll catch it early enough if it does. There are huge risks attached to both plans of action. Over the years, there have been other cases of VZV blinding children at the hospital and it’s generally only attacked one eye. Quite why, nobody knows but it gives us hope. There will be no eye doctors around at the weekend but a top eye hospital is on standby should things suddenly kick off. It’s possible that it wasn’t just the virus that destroyed his retina, but that his immune system played a role too, by over-defending the eye. It would be ironic if that was the case, given that this whole mess started with his immune system being too weak to fight anything at all. Josh hasn’t been eating or drinking much in the last few days and they’re considering giving him elemental feed through his peg to keep his nutrition and fluids up. We point out that he ate well enough when we were cooking for him at the house and the plan is to see if we can use the kitchen there to get him back on track. Josh is desperate to watch the Champions League matches from midweek and that’s what we do that next. It’s great to see him so excited and he appeared able to hear the portable DVD on full volume, even though his hearing has declined even further over the last two days. He’s spared a bath today, as the water puts his blind eye at further risk from infection and he will have to wear his see-through eye patch until Monday. That Friday feeling is happening all over the hospital as audiology ring up to say they can’t make it up here until Monday, and Josh’s heart echo looks like it might be cancelled too. Ophthalmology turn up around 6pm. It’s a doctor I’ve met briefly before and thought was okay, although a little brusque. There’s nothing too wrong with her manner as she examines Josh, but when I start to ask her a few questions she becomes far more abrupt and rude. Basically, all I’m asking is how we’ll know if Josh develops a problem over the weekend. It’s all well and good having an eye hospital on standby, but if nobody alerts then to a problem there seems little point in botehring. He lost his right eye over the space of a couple of days and it sounds like it’ll be 3 more before he’s seen again. In theory he could be totally blind by then. She doesn’t answer my question and talks over me. When I press her again she confirms what I thougt, that a nurse wouldn’t spot any changes until it was too late. She goes on to tell me, somewhat insensitively, that now he only has one eye he’s far more likely to notice a problem and needs to tell us straight away. I ask if a specialist would spot something before he would and again she talks for 5 minutes without even attempting to answer the question. When I point this out she eventually says yes, but goes on to say that they can’t see children every day as they need to have a life away from the hospital. It’s not a great one-liner, but I manage to remain calm and just reiterate the situation for her to collaborate it. What I’m being told is that if there is a problem, there’s a good chance that nobody qualified enough to spot it will be around until it’s too late to save his eye because it’s the weekend. It doesn’t sound great put like that, does it ? Again she just talks over me and ends up raising her voice to such an extent that even Josh, who is listening to music on his DSI through headphones and severely deaf, turns to look at her. It’s like a scene from The Apprentice boardroom and culminates in her yelling ‘ Will you just let me finish !’ No, I won’t actually because she’s just spent 10 minutes repeating the same thing over and over again and avoided answering me. I’m not being judgmental about nobody being here at the weekend, I just want the facts confirmed and she keeps refusing to do that. I tell her that we’ve been at GOSH for nearly 2 years now and I’ve never come across such an incommunicative department as Ophthalmology and that she is officially the rudest individual I’ve met here. Maybe it’s because she’s Croatian and lacks the finer subtleties of our language, but every time she opens her mouth her foot goes in it. The other point I try to clear up is why, if Josh was already well on his way to losing his sight when they saw him on Thursday, we weren’t not told until late Monday evening. She starts to say that it’s difficult to tell parents such shocking news and that it needs to be done sensitively, when I remind her that 4 days later Josh and I were told in a highly insensitive manner and that she witnessed it. To her credit, she admits that was the case and that communication from her department hasn’t been good. She will raise the issue on Monday as she’s concerned about the way it was handled. We will make a complaint as I want to know why the consultant we saw on Thursday told us we would have to act swiftly and inject his eye to save it and then nothing was done. And why, if there was no hope at that point, nobody explained that – especially as we spent the next four days believing time was being lost when in fact it was too late to do anything at all. It’s shambolic, but in the best interests of going forward, I tell her it’s unfortunate we were speaking at cross purposes and let’s just start over. I’m still uneasy with her even being in the room and find her extremely annoying. She agrees to talk to the Professor and eventually organizes for someone from another eye hospital to visit Josh on Sunday. Once she’s gone, one of our nurses tells me she’s been hauled over hot coals on several occasions for upsetting parents and is constantly rude to all the nurses on the ward. Even as we speak, I’m later told she was upsetting another patient on the BMT ward and then moaning about who was going to pay her overtime for being up here so long. All this leaves me shaken and takes the shine off just how wonderful Josh has been all day. When the heart echo finally takes place around 7pm he remains chilled throughout, singing Justin Beiber songs at the top of his voice with his headphones on while the cardiologist does an ultrasound of his heart. Josh looks a little puzzled when two images of his heart pop up on the screen side by side and stops to ask if he has two hearts. He’s obviously been watching far too much Doctor Who and is reassured to hear he just has the one and it’s working perfectly. There appears to be a little less fluid around it too, which is good news. We watch Disney’s Chicken Little together before bed, both with our headphones on, although I can still hear him giggling away over the soundtrack. He goes straight to sleep once it’s finished with me following shortly after.
Saturday 6th November
Josh is truly amazing. Woken in the middle of the night to have drops put into his eyes, he hardly moans at all and then goes straight back to sleep. I’m not sure I’d be that accommodating. Everything must be so strange for him. I’ve spent several hours at home and in the room wandering around with one eye shut, just to get a feel for what it’s like. I’ve worn a patch a couple of times in the past – once when a fellow passenger on the tube opened a copy of The Times and sliced my eyeball and again when I had a cyst or something cut out. It seems fine for a few minutes but becomes very disorientating after a while and it’s virtually impossible to judge distances. He seems to be adapting well though and provided his other eye remains out of trouble, it will most likely be his hearing loss that affects him most. It’s definitely worse than it was a week ago although nobody can tell us why. He just nods and pretends he can hear at the moment which fools some of the people some of the time, but he can’t fool me as I’ve used the same trick for many years. It’s a sad. lonely, silent world that you retreat into – afraid to open your mouth in public for fear of making a fool of yourself and never being able to enjoy music or TV without headphones. There’s still an outside chance that the loss is partly due to the encephalitis and that he’ll improve a little, but at the moment it’s going the other way. Josh asked for a lie-in this morning and he gets one. By the time he wakes up it’s gone mid-day and I’ve managed to set up the PS3 he got for his birthday back in July and loaded up his all-new FIFA 11. When we switch it on it’s a real surprise for him and he’s almost speechless with joy. The game is absolutely brilliant and, despite all Josh’s problems, he still manages to beat me every time. We have a great session and a real giggle and it’s a good excuse for him to be out of bed and sitting in an armchair for a couple of hours. He even managed to eat half his pasta while we were playing, although I am having to put water down his line as he’s still not keen on drinking. He wants another nap after that, which is perfect timing as one of the nurses was going to sit in with him for an hour at 3pm so I could grab a bite to eat. Unfortunately, for one reason or another, she can’t make it. It’s not a problem as I’ve gone days without eating before, but because I was expecting her to turn up, I ended up just bumming around rather than cracking into work or doing something more constructive while Josh was asleep. He wakes around 5pm and will hopefully stay awake for X Factor now. Rumour has it that all the singers are due to make an ‘ unscheduled’ appearance here in a few weeks, but they rarely come up to the BMT ward as there are no photo opportunities. Leona Lewis is the only one who’s ever stuck her head round the door which must have been a worry as she has a tendency to ‘ Keep bleeding, keep on bleeding.’ Hopefully there was a doctor present. Josh spends the next hour screeching pop songs he doesn’t know the words to at the top of his voice while listening to his DSI. We’re in the wrong place to see any fireworks out of the window tonight. Two years ago we were on Rainforest and saw the most spectacular display for the Lord Mayor’s Show, high above the London skyline. Tonight we have to make do with watching X Factor and hoping Wagner finally gets the rocket.
Sunday 7th November
It’s taken a while, but today I finally met an ophthalmologist that I liked. He spoke to me like a human being, explained everything he was doing as he went along and was great with Josh. Unfortunately he doesn’t work at GOSH so we’re unlikely to ever see him again. Shame. Josh slept until around 10.30am when I woke him up to have two sets of drops in his eyes. The first to battle the virus, the second to dilate his pupils for examination. He’s so brave and always asks for his blind eye to be done first as it’s so painful – presumably because it’s still tender from the biopsy. He woke up happy this morning, as usual, and we just read and talked for an hour or so while we waited for the ophthalmologist. The nurse and I had a bet on what he’d look like and she was uncannily accurate in her description: tall, olive skin, dark hair, confident, friendly, attractive… maybe it was just wishful thinking on her part as she’s currently in the middle of a messy divorce. Apart from asking Josh to read an eye chart with his blind eye, he didn’t put a foot wrong. Basically, he’s saying that everything looks stable at the moment. No white spots visible in his good eye and no sign of infection in the other. When I ask him the same questions I asked the eye doctor yesterday, I get intelligent answers straight away. He believes that we can avoid injecting Josh’s eye if we continue to check it every couple of days or so. They would only inject at the first sign of a problem and it’s more than likely they’d be able to catch it in time to save it. Once he’s gone, Josh climbs out of bed with my help for a FIFA 11 session on his own until Joseph and Claire arrive. They drove down today, which allowed Joseph to wear his football kit despite the cold. He insisted on wearing a Man Utd kit to cheer up Josh. The boys get on really well, as per normal, and play a Crazy Frog racing game on the PS2. Joseph wants to be ‘ The Annoying Thing’ which Josh finds very appropriate. Neither of them have played it before and it’s encouraging to see Josh win every time. He has a little accident while he’s playing, and I don’t mean crashing one of the cars, so I have to carry him back to the bed to clean him up. After a couple more races, he’s tired and wants a nap so Joseph and I head off home. Claire was hoping he’d watch X-Factor and Strictly with her, but calls to make sure I put them on DVD for him as he’s too tired. We remain as strong as ever, but tend to talk far less on the phone at the moment because we’re always exhausted. It’s over 4 months since we spent any real time together and it feels like a lifetime. Thank God it wasn’t Josh’s.
Monday 8th November
A good night’s sleep turns sour when I wake up suddenly from a bad dream at 4.30am. It might not sound too nightmarish to you, but I was sitting with Claire chatting with a BMT doctor I didn’t recognize in a place that was a curious hybrid of home and hospital. He had a strong, warm reassuring voice and sounded just like Claire’s brother. He wasn’t saying anything bad. On the contrary he was telling us how well Josh was doing, how proud all the doctors were of what they’d achieved and how excited we must be as parents to have him back. Except that’s not how we felt at all. In my dream we were both angry and frustrated and convinced that Josh wasn’t actually Josh anymore. That they ‘d taken him away and left this other boy in his place and were pretending it was him just so they’d look good. No matter how much I challenged the doctor on this, he’d just sit there smiling and calmly reassure us we were wrong – even though I knew we weren’t. I can’t remember how or if it ended, but I woke up with a start and couldn’t get back to sleep again for ages. It doesn’t take Freud to work a dream like that out because there’s a sliver of truth in it. We consider ourselves blessed to have Josh back from the brink with his personality, memory and ‘soul’, if you like, intact - but he doesn’t look like Josh anymore. You look at pictures taken a year ago and he’s virtually unrecognisable. If we’d been told in our deepest, darkest, hours that we’d have him back like this - with his hearing shot to pieces and half blind - we’d have been ecstatic. But it’s human nature to always want more and to see him recover so well against all the odds, only to be hit by two such huge, late, low blows hurts so much. At some point, hopefully soon, we’ll leave the hospital and the doctors and nurses will merrily wave goodbye to us and think of Josh as a huge success story, which in many ways he is, but we’ll be living with the knock on effect of what’s happened since his transplant for the rest of our lives. Joseph’s fast asleep beside me in the dark with his little legs draped over mine. It’s comforting to see him sprawled out and looking so untroubled and eventually I drift off back to sleep again until the alarm goes off. The rest of the day is a blur of work and chores. The world’s lightest mice continue to elude me. Neither cheese nor bodies are to be found in my carefully laid 20p mousetraps and I’m getting frustrated. After one last desperate search of the cellar, I surface triumphantly with my old mousetrap in my hand – careful to avoid my fingers, obviously. This one has a track record. It’s small, but deadly and called ‘Lucifer’ – a name guaranteed to scare the mouse-droppings out of any mouse smart enough to read it. I leave one of the other traps up there primed with cheese as well, just to lull it into a false sense of security. Joseph’s at a friend’s house after school which gives me more time to work thankfully as I’m falling behind. When I pick him up he’s so involved in Super Mario he hardly notices me, but once he’s home he’s desperate for me to check the loft and see if I’ve caught any mice. I stick my head up in the loft, but can’t see the mousetrap at first. It’s about a foot away from where I left it with a large mouse dead inside it with it’s neck snapped. Joseph says he’s never seen a mouse before and takes a good long look at it, then says it’s okay that it’s dead as they’re terrible pests. He didn’t get that from me, but I’m not about to disagree with him. Claire didn’t sleep well last night and feels sick all the time with worry. Josh has been okay overall today. Even he’s noticed how much his foot has turned in and stiffened up since he’s been in hospital and agrees to start wearing splints again. He’s measured for new ones and has chosen Batman on one leg and Spiderman on the other. Let’s hope they get on. Claire’s been doing her usual detective work and is worried about Josh’s bloods which appear to have dropped significantly over the last few days, although nobody seems particularly worried. When she points it out they start to look a little more concerned which isn’t a good sign. He has physio and occupational therapy today, although audiology don’t show up again which is a shame. Ophthalmology sent their most prestigious eye professor up today and he confirmed that both Josh’s eyes appear to be stable. He has been talking to several top surgeons in this field to try and determine what the next step should be and decided we’re best to just wait and see – or not, as the case may be. He has only ever dealt with a handful of cases of VZV in his entire career and trust me, he’s not that young. It’s extremely rare. In one of the cases, the boy went blind in both eyes at the same time. In two cases it affected one eye but not the other. In another case the child went blind in one eye and then blind in the other 2-3 months later. VZV is the most deadly viruses the eye can develop as it’s so aggressive and difficult to control. It’s only ever really seen in severely immuno-suppressed people which begs the question why has Josh developed it now when he’s supposedly not all that immune suppressed ? This in turn brings us back to Claire’s worries about his recent bloods. It's safe to say that nobody has a clue what the future holds for Josh so we’ll just have to go on living from day to day. Today he can see. We just have to hope and pray he can see tomorrow and the day after that and the day after that. Sooner or later, surely the poor boy deserves a break…
