Saturday 13th November
It’s a real boy’s day at home today as Joseph and I enjoy a long lie in watching TV and eating breakfast in bed. Hopefully mum won’t spot any crumbs. While Joseph plays on Josh’s old Nintendo DS, I sweep up the last of the leaves and check the mousetrap in the loft. Lucifer has come up trumps again and another mouse bites the dust. I’ve been playing mind games with the mice over the last week, baiting the trap with cheese but not setting it in order to lull them into a false sense of security. It appears to have paid off. We brave the grey skies and Joseph cycles across the park to the local shops in search of Deadly 60 cards. These prove to be more elusive than any of the creatures Steve Backshall has ever tracked down on the show and after driving to Petts Wood and scouring at least 4 newsagents, we are forced to throw the towel in. A visit to the library more than makes up for his disappointment as we return home with 5 factual books about wild animals – including a book dedicated entirely to snakes. After lunch it’s games, games and more games. Before bed, we’re channel hopping and Joseph catches a glimpse of Ann Widdecombe on Strictly. ‘That woman’s really old. Why does she want to learn to dance in front of all those people ?’ he asks. I can’t think of an answer. Josh has had a good day by the sound of things but hasn’t really eaten anything. He does watch X Factor though and is gagging for ‘I’m a Celebrity…’ to start tomorrow unfortunately. I blame Claire for this and may force her to eat kangaroo testicles as punishment if I can find any on special offer at our local Tesco’s. Buy one get one free maybe…
Sunday 14th November
People often ask us how we cope with everything, but it’s no secret. The truth is, you just get on with whatever life chucks at you because there’s no other choice – especially when you have children. There are always little pockets of laughter and happiness to be found somewhere to lift your spirits and make life worth living. What’s happened to Josh is shocking and so unfair on him, but he seems to be taking it in his stride as much as anyone can. The biggest problem is that the problems he’s experiencing will never go away. As time goes by he’ll no doubt adapt to all his disabilities, but life in the real world will be a constant battle for him and will affect all of us for the rest of our lives. I don’t think doctors and nurses ever really want to hear this. Whenever we talk about the issues he’ll face in the future they just gloss over things and tell you how adaptable children are. I guess there are things none of us want to hear because it’s just too depressing. I don’t believe for a second that the policeman blinded by Raoul Moat really wouldn’t change a thing. Life will be hell for that family as they come to terms with what happened, but we don’t get to hear that. The papers would rather tell us about his heroism and how he’ll be back at work in no time doing a desk job. I find myself doing the same thing when I write the blog to some degree. I like to tell it how it is, but some things are just too bleak and painful that I have to talk them up. It’s as much for me as it is for anyone reading it and it’s part of how we all cope with life. Joseph wakes up full of the joys of life this morning which is great, but I’d rather it wasn’t at 5.50am. There’s little point in lying around with so much to do, so I’m up and about washing, ironing and packing so we can drive to London early. We’re parked outside in a disabled bay and up on Fox Ward by 10.40am and Josh is wide awake. Joseph is desperate to see him walk and Josh duly obliges strutting all the way down to the playroom where we play top trumps with Joseph’s Deadly 60 cards. Josh is the big winner overall and we even enjoy a few games together as a family, although Claire makes us remove all the snake and spider cards first. The boys play a couple of Quidditch matches on the Nintendo gamecube before Josh starts to tire and we escort him back to the room for a nap. I’d originally intended to take Joseph to the National Geographic shop today for the monthly visit of the Animal Man, but he says he’d rather not go as he plans to travel the world and see all the animals for himself when he’s older! With Josh asleep, the rest of us eat out together round the corner. Josh is still asleep when we return but wakes up to say goodbye. Claire had arranged for a play specialist to sit in with Josh for an hour so I could go back to the house and cook, but Josh isn’t feeling hungry and would rather I stayed with him. We watch football, play Monopoly Deal and read to pass the time before X Factor starts. It’s a late night for him as he stays up until the end of ‘I’m a Celebrity...’and has a good old laugh at the Bushtucker Trials which have started early this year. Personally I’m not that fussed about watching it but it’s all good, clean harmless fun. Unless watching Stacey swallow a kangeroo’s willy puts him off food for life...
Monday 15th November
Josh has a physio session in our room at 10.30 am and life is back to routine again after the dramatic events of the last few weeks. It’s easy to get lulled into a false sense of security though. The nature of the virus means Josh’s good eye could still go at any moment despite the medication he’s on and ophthalmology watching it closely. It’s difficult not to look back on the time lost between us spotting his squint and him finally being seen and wondering what might have been if the doctors had reacted quicker. Josh is on great form though, despite his late night, and walks over to the chair next to my bed at the end of his session and sits there rocking and singing along to his DSI with his headphones on. Yesterday I brought some fake poo and vomit up from Josh’s practical joke set at home, but he keeps telling the nurses that he’s going to play a trick on them so it never happens. He nearly managed a double bluff yesterday, telling the nurse he had a fake poo then leaving a real one in the commode. He was hoping she’d pick it up thinking it was plastic but it didn’t happen unfortunately. We have a fun morning and I nip to the house to cook again while he’s with his teacher. Our nurses have spent the morning trying to pin ophthalmology down to an approximate time, but nobody down there seems to be aware that he’s meant to be seen. Coming back into the hospital I end up following an ophthalmologist to Fox Ward but he appears to be here to see another patient and wanders off towards another room. Next thing I know he’s in our room and poised above Josh with drops in hand. Josh has his glasses on and his hearing aids in and is in the middle of his school lesson, so it seems a little inappropriate but I smile and introduce myself in the best interests of building a better relationship with the department. Unfortunately, whilst he seems a nice enough guy, he appears to have no idea of how to handle children and tries to force the drops into Josh’s eyes before he’s even ready. I ask him to slow down a little but while I’m putting the hearing aids away, he yanks Josh’s eyelids up again and almost shoves the bottle into his eye. He’s holding two different sets of drops at the same time and the other bottle shoots out of his hand, catapults across the room and lands on the floor. It could have landed anywhere, quite frankly. I have a bit of a go at him and explain that Josh is fine with the drops, he just needs a minute to compose himself which is always the case. He really is very good at having them done – just ask any of the nurses. The ophthalmologist then offers me the drops and asks if I want to do it. There really is an attitude problem going on here that I just can’t explain. We kiss and make up, without the kissing obviously, and he leaves promising to come back later. Their leading professor will also be seeing us today as he’s in on Mondays. Claire arrives soon after by which time Josh is fast asleep and probably traumatized. We have a very quick handover and then I’m off to the station via W H Smiths in one last gasp attempt to find Deadly 60 cards for Joseph. Claire has already combed the whole of Bromley for them without any success. I don’t find any either. Joseph is at his Auntie’s for the afternoon and for dinner which gives me time to do a few chores around the house before he returns. Claire has had another bad experience with the ophthalmologist I saw earlier, who finding Josh asleep thought that he’d be able to examine Josh’s eyes without waking him. Claire realized the absurdity of this and woke Josh gently and he was fine. The ophthalmologist told her Josh’s eye had deteriorated and that his retina was showing signs of damage without specifying which eye he was talking about. Only when she told him he was blind in his right eye, did he confirm that was the eye he was talking about. The deterioration he mentioned would appear to have been nonsensical as he had nothing to compare it too and saying ‘signs of damage’ when the retina was detached and the eye’s blind is an understatement to say the least. Claire then quizzed him on how good his good eye was, only to be told it was ‘pretty much okay’. She immediately asked him to expand on this as it’s either ‘good’ or it’s ‘not good’. He confirmed it was good. She found him a nice enough chap in the same way I did, but was left feeling physically sick because of the miscommunication. The professor came later on and reiterated that his retina was completely detached. He asked about Josh’s immune system which has been worrying Claire lately. She’s voiced her concerns on a number of occasions recently without anyone seeming to be overly concerned. If his lymphocytes are okay, as the BMT team keep suggesting they are, then he wouldn’t have lost his sight, so something is obviously amiss somewhere. As a closing note, one of the mum’s from school popped round tonight with a huge tray of her home-made lasagna for us. It’s a wonderful gesture and, as I haven’t eaten anything today, I’m especially grateful. Mamma Mia !
Tuesday 16th November
It’s my turn to have my ears looked at today and I’m late for my appointment. A year late be precise. My original appointment was scheduled for November 2009 but I cancelled it as Josh was in hospital for his transplant. Every time I’ve rescheduled since something has cropped up, but finally I’m here. It was hardly worth the effort as the consultant only spares me around 5 minutes. He goes on to remind me that my hearing will start to deteriorate in 5 years or so and warns me not to have the operation on my other ear as there’s a chance it will affect my balance. This is news to me and a little disappointing as he’d often talked about operating on my left ear too. I mange to discuss Josh’s hearing before I leave and show him a graph that he tells me is the equivalent of a 70 year old’s hearing loss. Not good news. The rest of the day is spent washing and shopping and sorting out clothes from the loft for Joseph. Obviously we buy him his own clothes too, but he gets really excited when a bag of Josh’s hand-me-downs is dusted off and brought down. After re-heating some more lasagne for lunch I decide to take a job that’s needed by Thursday, although I’m not quite sure when I’ll do it with Josh awake every night watching Z-list celebrities eating animal parts. I manage a gym visit before returning there a few hours later with Joseph for his swimming lesson. Josh has another good day and enjoyed a bath without using the hoist today. It’s something we’ve been talking about for a week or so and is another significant step forward. The BMT team finally acknowledge that his immune system isn’t great at the moment and tell us that he is most at risk from himself. That means the viruses we all have in our bodies which are normally kept under control by our immune system are the biggest threat. This includes VZV and JC which means his left eye is still in real danger. We’re sitting on a ticking bomb without any idea if, or when, it might explode…
Wednesday 17th November
Can somebody please tell me how Joseph always knows when I work late and why he wakes up two hours earlier than normal when I do ? After crawling into bed just before 3am I’m woken by a happy, smiling face less than 3 hours later. I just about manage to occupy him until a reasonable hour without expending too much energy. After the school run and a quick work chat it’s off to London again. Claire texts me to ask if there are any PJ bottoms in the house for Josh as he’s going through them at a rate of knots at the moment. There aren’t any, although coincidentally, I did buy some for myself from Tesco yesterday. Given that I have to parade up and down the corrIdor in front of the nurses every night on my way to the loo, I thought it was high time I got some new ones. They’re not exactly catwalk material, but they’re fine. I call them my freelance pants because they’re made up of lots of small checks. The first thing I notice when I walk into Josh’s room is that his left eye, his good one, looks different. Alarm bells start to ring. Claire noticed it too and an hour later ophthalmology appear and tell us it’s most likely pressure on his eyeball from fluid and high blood pressure. Hard to believe that sentence would ever come as a relief, but it does. Josh watches Wayne Rooney - Street Striker 3 which has started again on SKY. Don’t be confused by the name, it’s a nationwide search for the best young street footballers and nothing to do with ladies walking the streets looking to hook up with famous footballers and sell their stories. After school he has a nap for an hour then we play on the PS3 after that. He doesn’t eat at all today and I have a lot of ground to make up on his fluids, as he doesn’t want any water – not even down his peg. He complains of a couple of headaches, the first of which appears to go away while we’re playing video games which is a little bizarre. When the second one comes, he asks me to tell the nurses to give him some morphine. He doesn’t pussyfoot around, my son – straight for the hard stuff. I ask them to bring him Paracetamol first and it seems to do the trick. The OT comes around 4.30pm to show me how to bath him without the hoist. But Josh isn’t keen and, as he had one yesterday, I don’t push it. Instead I follow her to the bathroom where there’s a wooden seat that doubles as monkey bars to allow him to get himself into the bath. To demonstrate how it works, she vaults into the empty bath, fully-clothed, and starts to take up various strange stretching positions. It’s like watching a cross between an aerobics DVD and a soft porn drama on Channel 4 that the Daily Mail would try to ban. Josh had planned on staying up to watch the football but after a visit from Radio Lollipop and making two windmills he’s too tired and asleep by 7pm. He didn’t miss much as the French wallop England 2-1 at Wembley. In an effort to get more fluids down him before I go to sleep, I accidentally spray him when his line kinks and water goes everywhere. It’s a horrible way to be woken up and Josh shouts out as you’d expect. He then keeps on apologising, even though I tell him it was 100% my fault. Bless him.
Thursday 18th November
Josh is expecting a lie-in today as gym isn’t until 11am but at 9.30 I’m told he needs to go down for a heart echo. Seconds before I wake him there’s a last minute reprieve and he gets an extra hour in bed before they come up to see him. That’s not the only good news as there appears to be slightly less fluid around his heart. Josh performs well at the gym despite his initial reluctance to go. He does various squats and stretches and, as a finale, walks the entire length of the corridor unaided. Hogwarts beckons, so rather than sleep when we’re back in the room we play Harry Potter Lego. After school a new play specialist arrives who’s from Manchester but has a Glaswegian accent. Josh can neither hear nor understand her but enjoys thrashing her at Monopoly Deal. The three of us played for an hour and I let her have the only chair in the room and sat on the commode. As far as I know none of the nurses filmed me on their mobiles, so hopefully I won’t be cropping up on You Tube. It’s bath time next and the occupational therapist accompanies us to the bathroom. She doesn’t jump into the bath herself this time, which is just as well as it’s full of water. We manage fine on our own, but Josh’s headache comes back soon after he’s dry and dressed and he just wants to go to sleep. A few minutes later he vomits violently several times. He falls asleep with me stroking his head gently as I try to read today’s newspaper in the dark. Page 11 tells you how to find a title for your autobiography. Just put the name of the last item or two you bought in a supermarket together with the last medical problem you had. Mine would be called ‘Coke, mushrooms and mouth ulcers,’ which makes me sound like a Rock star. I don’t hear a peep out of Josh until an hour after having Paracetamol when he wakes with a beaming smile to tell me his headache has completely disappeared before turning over and going straight back to sleep.
Friday 19th November
A long night, but not for any terrible reasons. Josh had a couple of bad dreams but was remarkably calm about them – probably because his waking life is such a nightmare. We had our usual sleepy conversations every couple of hours when he woke up needing a wee. There were a few episodes with the nurse, who’s nice enough but far too loud, even for a room with two deaf, sleepy boys in it. But it was none of those things that kept me awake. At around 3am Josh started to have a conversation about Harry Potter and the Deathly Hallows and how much he wanted to see it at the cinema. He asked when it would come out on DVD and whether Great Ormond Street would screen it before Christmas. I answered as diplomatically as I could guessing Easter for the DVD and that GOSH wouldn’t show it until then as the only movies they get to show early are Disney ones. He asked if mum could bring the book up so he could read it again and I said yes and that was it. Except it wasn’t. His conversation haunted me. Would he have to wait until Easter ? Could I take him in London to a matinee once the crowds have died down ? If the biggest danger he faces is the viruses he already has, surely sitting in a half empty cinema would be okay ? Would he be able to hear it without hearing aids ? Would he wear them if he couldn’t ? The sound varies so much in modern movies as dialogue is suppressed in favour of music and sound effects and the sudden shifts in volume can be really deafening if you have artificial hearing. Forget sound for a minute, what if he went blind before he saw it ? Do they sell DVD’s with commentary over the action bits for the blind ? Could we buy it as an Audio book on CD or from iTunes and stick it on his DSi ? The answer to that one is yes, as I Googled it at 4am but it’s £76.99 which is extortionate. My mind is out of control by this point and I start thinking about what life would be like for him if he was blind. What would be left for him to enjoy ? Would life truly be worth living ? How would he come to terms with it ? How would we all cope ? I think back to when we left hospital last Christmas Eve when I ended the blog because it was the start of a whole new life for us all – but especially Josh. We were giddy on a euphoric mix of hope and relief. He’d sailed through chemotherapy and his transplant and we were all back together as a family again. No more weekly injections for Josh or toxic drugs. No more stomach cramps and bloody diarrohea. Back to school by Easter and starting Secondary in 2010 or early 2011. A near normal life free of pain awaited him. We knew it wouldn’t be a walk in the park but we believed the worst was over. And where are we now ? A year on and we’ve spent the last 6 months in hospital and will spend the next 6 months or more living away from home – either here or in a rehabilitation centre. A whole year of hardly seeing Claire. Josh’s sight and hearing loss mean normal schooling is probably out of the question even with a statement as he’s lost almost 3 years of proper schooling. He’s doing well in physio but is still a long way behind where he was post transplant, which was light years away from what a healthy 11 year old can manage and don’t even let me start on his poor feet and the grief they will bring him over the next few years. We began 2010 full of hope. As it draws to a close our greatest hope is that things don’t get any worse than they already are. All this and far more than I could ever write goes through my head as I lie there in the dark feeling sorry for ourselves for the first time in a long time. I don’t get back to sleep again. As dawn arrives and light filters into the room through the gap in the curtains, I know I’ll pick myself up and get on with it because that’s what we do. That’s what anyone would do in the same circumstances. Our children need us to be strong and if we can manage to be half as brave and courageous as either of them we’ll be doing a good job. The rest of the day is fine. Daylight and activity quickly banish all the night demons that plagued my mind and I’m soon back on track. Josh excels at the gym despite being somewhat reluctant to start. The ophthalmologist arrives just as we sit down to explore Hogwarts again. She gives him a quick examination then pops some drops in and will return later. Claire arrives during ward round. Josh’s immune system remains a mystery but it appears to be poor at the moment which is worrying. They are planning to reduce his steroids as his lungs, heart, kidneys and skin are in reasonable shape at the moment and even the slightest reduction could help bring his lymphocytes up. Too late for the Kings Cross train, I decide to sprint to City Thameslink and catch it up further along the line. Just make it and am home in time to unpack before picking Joseph up and then packing him off to Olivia at the bottom of the garden’s party, which isn’t taking place in their garden but at a Junior Roller Blade disco in Bromley and then carrying on at Pizza Express. I jump in the car once I’ve waved him off and head for the gym, spotting a Jaguar turning round in our drive as I leave. It’s not unusual for cars to do that, but it’s still there an hour later when I return. I sound the horn twice and two guys clamber out to explain they were dropping it off at a neighbour’s, presumably from a garage, and it broke down on our drive. I’m told the Jaguar rescue service is on the way which isn’t much comfort as it sounds like a division of the World Wildlife fund and quite frankly I’d rather save Tigers. Claire had another ophthalmology shock after I’d gone with the same doctor returning and expressing some concern about his good eye. Luckily our friendly neighbourhood Croatian came to the rescue and was able to confirm that it was a false alarm. Joseph is back around 8.30pm and in one piece. He only fell over twice despite telling half the class and his teacher that he was worried about breaking his leg. He’ll be appearing on Dancing on Ice next…
