Wednesday 22nd December
After lazing around in bed until after 9am, Joseph and I finally venture downstairs and tuck into our bowls of coco-pops. The snow’s beginning to thaw, but we opt for a day in and I decide to give Joseph one of his Christmas presents early – a Wii Safari game where he’s a wildlife photographer scouring Africa taking pictures for a magazine. You track down the animals by following footprints or even dung piles, observe them in their natural habitats and, if you get too close trying to get a great shot, be prepared to run like the wind as they will attack you. It’s far better than I expected when I spotted it on ebay and we really feel like we’re exploring the Serengeti together. It’s educational too as there’s a commentary on how the animals behave and the photographs you take appear in an onscreen magazine loaded with fascinating facts. Unfortunately, Claire and Josh are stuck in a far more unpleasant adventure. Josh developed a tummy ache during his bath last night and was screaming in pain shortly after, demanding that the nurses call a doctor. He said it was a different kind of pain and kept asking Claire if he was going to die. From what I can gather he was like this for most of the night until the doctors prescribed a morphine infusion which eventually settled him once it kicked in. It was gone 7.30am before Claire climbed up onto her tower block bed and managed any sleep. Josh’s lymphocytes have gone through the roof which the doctors are quite excited about, although in reality it probably just mean he’s fighting a virus or infection they haven’t spotted yet. An ultrasound was done but it shows up nothing and the doctors are starting to believe it could be GVHD of the gut which would be a real problem as his steroids would have to be increased, putting his brain at risk again. Yesterday’s optimism is wearing off fast as there’s little chance of Josh stirring on Christmas Day if he’s still on morphine, let alone opening presents or leaving his room. I try not to think about it and throw myself into playing with Joseph and working out what we need to take to the flat tomorrow. By the time I’ve read a bedtime Santa story all I want to do is sit down and watch TV. I was itching to see ‘Kick Ass’ long before it came out and it’s on pay per view tonight. If the idea of seeing an 11 year old girl dressed as a superhero hacking people’s limbs off to the Banana Splits theme tune doesn’t float your boat avoid it like the plague, but I loved every second of it. Best film of the year for me. Oh, hold on a minute - have I actually seen any others ?
Thursday 23rd December
The roads are relatively empty and Joseph and I pull up outside GOSH just before noon. Seeing Josh is a terrible shock for both us – but especially for Joseph. We’ve seen him far worse than this, but he hasn’t. Apart from everything else, Josh is feeling the after effects of the morphine and can hardly open his eyes or speak. He’s agitated and rubbing his face and muttering incoherently as if in a deep sleep. He recognizes me and says ‘ Hello Daddy,’ but hardly acknowledges Joseph at all. Josh’s fluid balance is not good at the moment and he hasn’t done a wee for almost 24 hours. After a fair bit of coaxing we manage to get him to sit up and slide off the bed where he hugs me while he fills the bottle. Whether it’s enough for him not to need a double dose of diarretic and further risk his already failing hearing is debatable. Once he’s back in bed I jump back in the car and drive round the corner to unpack Christmas presents and decorations at the flat. I move some of the furniture around and put some lights up in an effort to make it look homely and more practical and I think we’ll be fine here. There’s a terrible smell coming from somewhere though and for once it isn’t my sweaty armpits from rushing around. The culprit is a three week old and leaking bottle of chocolate milk in the bin - not mine, I hasten to add. Claire and Joseph nip down for lunch while I sit with Josh and then leave soon after. It takes them almost 2 hours to drive back. Ophthalmology want to see Josh today rather than tomorrow to fit in with their staffing issues or Christmas shopping plans so I put his drops in again. It isn’t easy as he’s so unresponsive and in the end I have to force his eyelids open with one hand and deliver the drop with the other. Our favourite Croatian arrives a couple of hours later and is shocked to see Josh this way. She’s very good with him and together we just about manage the examination. She tells me everything looks fine. The problem is that she struggles to express herself in English and what begins as a change of plan and only seeing Josh once a week, quickly changes into a conversation about not being able to overrule consultants and then defending and apologising for her previous behavior in the same breath. I’m totally lost, but it sounds like he might not be seen for over a week. When I ask for clarification of this, she goes round the houses and back before doing a complete U-turn and arranging for the eye hospital to see him on Monday as his general health is deteriorating so fast. It sounds like the right call. With Josh completely out of it, I catch up on some paperwork and then sit down to watch Mad Men season 3 for light relief. We’ve borrowed it from friends who’ve been abroad for a couple of years and unfortunately it’s the wrong region and won’t play. I resist the temptation to fly out to Singapore to watch it as flights are still being delayed out of Gatwick and Josh is so dependent at the moment and constantly calling out for me in his sleep. It feels like a return to the dark, dark days of August and September…
Friday 24th December
It’s Christmas Eve and a year to the day since Josh was discharged following his bone marrow transplant. We left full of hope and dreaming of a fresh start for Josh. Today we’re a far cry from that. Josh was very unsettled and confused overnight, but didn’t appear to be in pain so I kept him off the morphine in the hope that he’d become more coherent and less agitated. He didn’t. Around 8pm last night, the nurse told me one of the doctors had finally got round to looking at his bloods and was convinced Josh has pancreatitis again. It would explain his severe pain the previous night and possibly his current confusion. We’d been told the ultrasound had looked normal, but we’re now told they couldn’t actually see his pancreas as his bowel was too full and swollen. A surgeon appears around midnight to give him a quick examination and he agrees with the diagnosis. There’s nothing more that they can do at the moment. When Josh is awake, just about everything distresses and panics him. Any sudden movement makes him cry out. He hates the nurses touching him and begs me to take his blood pressure. He refuses to listen to or fails to understand even the most basic sentences and it’s heartbreaking to see him like this again. We should be reducing his fluid intake but pancreatitis gives you a raging thirst and it’s hard to say no to him when he’s so desperate. At least I manage to convince him to wee a few times, although on one occasion the end of his gastric peg comes off, dragged down by the weight of a full fluid bag, and his sheets are soaked. I struggle to fix it, not realizing that it had been put on incorrectly in the first place and there was a vital piece missing. By the morning, Josh is finally tiring and sleeps soundly for a few hours. I get a chance to update Claire on the phone and speak with the doctors. Claire’s at the crematorium , decorating Alex’s garden then making her way over from there. I’m unsure of the best route but I’m sure she’ll mange. Josh’s physio arrives around 10am just to see how he’s doing and drop off a present for him. She’s unexpectedly on call this evening and offers to sit in with Josh if Claire, Joseph and I want to go out to dinner together. Shortly after she leaves, the top of Josh’s peg comes off again and the contents of his stomach flood out onto his bed, Once I’ve calmed him down and changed his bed, I realise that there’s nothing holding his peg in place and it was only a matter of time before it fell off. Claire remembers a nurse changing it a few weeks ago and I find the missing piece in a drawer and manage to secure it. Ward round is considered and thorough and it’s great to have Doctor Robert back, although there’s little we can do at the moment other than wait and see how things develop. A gastro doctor pops in to see him but I have to ask her to leave when Josh suddenly sits bolt upright in bed having flooded his bed with an enormous wee. He slides off the bed and clings to me as he sobs and I try to console him while mopping up the wee with his sheet in the vein hope we’ll be able to weigh it later and keep his fluid output up-to-date. The nurses are quick to strip, clean and remake his bed and he’s asleep as soon as I’ve washed and dried him. Claire and Joseph arrive soon after having successfully navigated their way through South London. Joseph rushes to the bed to say hello but Josh doesn’t appear to know who he is. He hardly talks and just grunts and screeches. His lips are cracked and bloody. One of the top gastro consultants visits us and reiterates that there isn’t much they can do at this stage. Nobody can explain his apparent neurological decline or even if he’s going through one, but I can’t help but wonder if his lymphocytes are so busy defending his pancreas they’ve left his brain exposed. I drive the car to the flat and unpack food, more presents and clothes before parking round the corner. By the time I walk back, Josh’s ‘babysitter’ has arrived and we head off to Giraffe at the Brunswick Centre to eat. The streets, shops and restaurants are empty and the chill in the air makes the evening feel magical. Good old Steak and chips with garlic butter and a strawberry and lime cider to wash it down is just the thing and Joseph seems happy to be with both of us for the first time in nearly six months. We put on a brave face, but it’s hard knowing Josh is back at the hospital and not knowing what tomorrow will bring. The nurses wait until we’re back before doing his observations which is just as well as he wakes up and starts screaming as soon as they touch him. Claire’s staying the night and I leave with Joseph. In the hospital foyer a Salvation Army brass band is playing ‘Silent Night’ and I have to choke back the tears. Back at the flat we put out our ‘ Santa stops here’ sign and leave biscuits and milk out for the big guy himself. Rudolph has to make do with a couple of measly slices of carrot sneaked out of a microwaveable bag of veg. Joseph’s as excited as any other 5 year old on Christmas Eve. He’s in bed by 9.30pm dreaming of Santa and Christmas presents, but there’s only one gift any of us really want tomorrow and it’s not something you can wrap.
Saturday 25th December
Claire rang late last night asking whether Josh had been screaming in pain with me overnight or not. He’s due paracetamol but she’s wondering if he needs something stronger. He sounds much worse than on my night but 30 minutes later I get a text telling me he’s settled down. In total contrast to the hospital ward, our bedroom in the flat is chilly but the duvet’s snug and Joseph doesn’t wake until nearly 8am which is an unexpected festive treat. Santa’s filled the stocking hanging on our bedroom door and somehow managed to find 5 packs of lesser spotted Deadly 60 cards amongst many other weird and wonderful things. A trip to the living room brings even more goodies including, of all things, a drum kit. Now, I’ve got nothing against the big fellow with the white beard but what was he thinking ? At the time of writing we haven’t been evicted or arrested for disturbing the peace, but surely it’s only a matter of time. The morning is great fun as we keep ourselves busy and avoid thinking about Josh. We arrive at the hospital just after Father Christmas and Rudolph have departed having left behind two sacks of presents for Josh and one for Joseph. Claire managed to snatch a photo of him outside our room. Josh has deteriorated even more. He has no idea it’s Christmas and doesn’t acknowledge our presence even when he’s awake. He was a little more coherent when Claire gave him a bath this morning, and he’s able to move pretty sharpish when he’s about to vomit so it’s not all bad news, but it’s a far cry from the Christmas we’d imagined as he was doing so well last week. Joseph unwraps his presents from us while Josh sleeps and is a very happy young man. At lunchtime a big buffet has been set up in the playroom for all the families and staff on the ward. A lot of effort has gone into making it look nice and it’s a terrific spread. We make several trips down there and eat more than enough to keep us going until our own Christmas dinner this evening. We play a couple of Joseph’s new games in the room, pausing now and again to calm Josh down every time the nurses come in to take his blood pressure. Claire had very little sleep last night and starts to nod off with Joseph lying between us on the bed. It’s not very comfortable for her and I send them back to the flat with Joseph for the rest of the afternoon. It’s strange sitting here on my own with Josh on Christmas day - in some ways so much better than being alone, in other ways far more upsetting. Josh suddenly sits up and tells me he feels sick – he’s rarely wrong and he’s right on the money this time. As soon as he’s finished he asks for hot water which is a little baffling until I realise he wants a bath. I duly oblige and he really enjoys himself in there as usual, although I’m a bit worried when he starts to look like he’s nodding off as I have no idea how I’d manage to get him out if he’s asleep. I lure him out with the promise of some cold water when we’re back in the room but hit a problem as I’m told the BMT kitchen staff have so busy preparing for the party they’d forgotten to boil and bottle any for the ward. There will be none available until the morning at the earliest. I go ballistic. Lovely that the spread was, you can’t neglect your day job. The children are meant to come first here and Josh isn’t allowed tap water and currently has a medical condition that gives him a raging thirst. It’s the only thing that gives him any relief at the moment and he will go mad if he can’t have any. One of the nurses offers to boil some water and goes off to find some sterilized bottles but it’ll be a few hours before it cools down enough to be drinkable and there won’t be anything like enough to get us through the night. A man on a mission, I manage to track down 8 boiled water popsicles buried at the bottom of one of the freezers which are 100ml each when they’ve thawed out. By running one of the packs under a hot tap, I melt enough to keep him happy and he soon nods off. I just about have time to call my mum and dad and wish them Happy Christmas before he’s calling out again by which time there’s enough defrosted for a proper drink. Claire and Joseph pop back briefly around 6pm with my Christmas dinner which I tuck into while sitting on the bed. it’s just been another day here in hospital for Josh. It’s a shame he missed the excitement of Christmas Eve or seeing Santa on the ward, but he can open his presents as soon as he’s well enough. Christmas has simply been put on ice for a while. Once Josh’s pancreatitis settles down a bit more, we should have more of an idea of just how much the JC is affecting his brain. I suspect it’s quite a bit, but the doctors appear to be in denial again. Either way, he’s beaten it once and he’s tough enough to kick it’s butt again.
Sunday 26th December
Okay, so that’s Christmas out of the way and not a moment too soon as far as I’m concerned. Far from finding Boxing Day and the aftermath downbeat and depressing, I generally feel more upbeat as some sense of normality starts to return. No matter how bizarre our life sounds these days, it’s normal for us and the last few weeks have just been more stressful in much the same way as everyone else’s. On top of decorations to put up, presents to buy and cards to write and send, we’ve also had to contend with having no idea where we’d be spending Christmas or how on earth it would unfold. Everybody’s focus over the last month, including ours, has been about getting Josh home or better or all being together for the big day, but in truth it doesn’t matter a jot. The rest of his life is our real focus and that starts today. It was a bad night again unfortunately. No pain, but incoherent rambling most of the night in between saying how much he loves me and that he’s going to die. There were several sheet changes and vomits, including a particularly violent one that soaked his bed during nurses hand-over at 8am. He begged me for a hot bath and once again he’s more coherent when he’s in it. He lets me moisturize him afterwards but his skin is still rough and scaly everywhere like a lizard’s. In some places it’s starting to break down and is a real concern. We just about survived the drinking water crisis but it meant running back and forth to the kitchen all night defrosting popsicles and pouring the thawed contents into measuring bottles to keep tabs on how much he drank. Immediately after his bath he vomited again and had diarrohea so I was kept busy for a good hour. Claire called to see how things were while all that was going on and sounded in high spirits after a good night’s sleep, but when I phone her back she’s in tears having pulled a muscle in her neck reaching for the towel in the bathroom which is a bit of a stretch as there’s a camp bed in front of it. It’s improved a bit by the time they arrive at the hospital where Joseph opens even more presents from various friends and family. The ward has another buffet today and while we’re all tucking in, Josh wakes with a start as he needs the toilet. We slide him off the bed and onto his commode where he suddenly appears to be more aware. He spots Joseph and calls him by name, then reaches out and they hold hands and hug. Claire and I start to well up, but it’s nothing compared to Joseph who has missed his brother so much he bursts out crying saying over and over again how happy he is that Josh recognizes him and can talk again. Josh is still tired but doesn’t want to sleep. He lies in bed but starts to chat and as he does, he starts to make more and more sense and his personality shines through again. Wanting to keep the momentum going, I present him with his main present from us which is an iPad. He uses one with his teacher at GOSH and loves it, although she’s been banned from using it while he has norovirus as it can’t be washed in hot, soapy water afterwards without rendering it useless. I’ve downloaded lots of his favourite apps plus some new ones including The Simpsons and Family Guy games. All his music is on there too including One Direction and Now 77 and Josh starts to sing along and move to the beat as if he’s never been away. After showing us he still has some co-ordination by playing Pocket Frog, we all sit and watch his Jedward version of the Black-Eyed Peas on You-Tube. If you’ve never seen click on the link. It was recorded just after his transplant in November 2009 and to date he’s chalked up 1,000 or so hits – not quite as popular as the woman throwing a cat in a wheelie bin but not bad. I take a couple of photos of him in bed, but he insists I take some of him with ‘Dobie’ as he doesn’t want him to feel left out. Claire and I are staggered by the change in him, although he soon runs out of steam and goes back to sleep. We don’t care, as at least we saw a glimpse of the real Josh again and he had a little taster of Christmas. Joseph and I come ‘home’ soon after and play until 6.30pm before eating and watching the latest ‘Mummy’ movie on ITV. It’s not very good but Joseph likes it and is desperate to tell his friends at school that it features a scene where a man’s butt is on fire. Claire calls to tell me that the BMT consultant we’re never entirely sure about will be looking after Josh in the New Year. He paid her a visit this afternoon and told her that his tiredness and confusion is undoubtedly down to encephalitis caused by the JC virus or something new and that he’s on the case. It will be quite refreshing to have him back as he’s very straight talking, whereas the rest of the team are a little bit Monty Python and tend to look on the bright side of life. Having said that, he’s not a great listener and that can be a fatal flaw…
Monday 27th December
Just like Claire the night before, I fell asleep on the sofa last night watching TV. It was a wonderful, deliriously deep, fluffy sleep that continued long after I’d dragged myself down the corridor to bed. Joseph sleeps well here too, so we both enjoyed another lie-in. Josh is asleep when we arrive. No surprise there, although his eyelids are swollen and puffy as a result of being heavily hydrated overnight and he looks like he’s gone 12 rounds with Rocky Balboa. Claire wanted me here when his eye drops went in and, rather than distress a nurse who hasn’t looked after him for many months, I do it myself. Shortly after, an ophthalmologist arrives from Moorefield eye hospital. Her bedside manner is far better than any of the eye doctors we have at GOSH and it’s just as well as Josh is very reluctant to open his eyes, let alone have them prised open and subjected to a bright light. He gets an all-clear and goes straight back to sleep. Joseph and Claire head back to the flat for the rest of the afternoon. Claire will sleep with Josh tonight and then drive home with Joseph tomorrow morning for a couple of nights. With Josh still showing no signs of waking I play on his iPad for a couple of hours and master my archery on a Robin Hood app. I’m interrupted just as I’m about to win a trophy for splitting my own arrow down the centre when our new doctor-to-be comes in. After a quick catch up, he decides to wake Josh and carry out a set of neural observations on him that range from asking him where he is and what month it is to touching his nose with his finger. He manages most of them, but we both struggle on anything related to days and dates as we lost track many months ago. The doctor believes the pancreatitis is on the decline and no longer an issue and the tiredness is down to the JC affecting his brain. He talks about stopping the ciclosporin which directly contradicts what we’ve heard before, but hey that’s medicine. He mentions various kinds of light treatment for Josh’s skin which would allow them to reduce his immune-suppression further if they worked, but it’s unlikely that they will. Once he’s gone, Josh manages to do a wee much to the delight of an anxious nurse who desperately needed an uncontaminated sample from him today. Claire and I swap over around 7am and Joseph and I dine out at The Gourmet Burger Kitchen and share a chocolate milkshake. He wanted us to all eat together, no doubt spoilt after doing it on Christmas Eve for the first time in 6 months or so, but there’s no way we can swing it. Back at the flat I start packing up Christmas presents. Josh’s will stay here to be opened, obviously, along with a couple of Joseph’s for him to play with when he returns in a couple of days. The flat has been everything it needed to be, with the exception of the chair that collapsed underneath me yesterday, and the bath here is fantastic. Six foot long and deep enough for Joseph to go snorkeling in – which is exactly what he does tonight ! Me ? I wallow in it like a hippo in a mud pool before relaxing with a rum and coke in front of the TV…
Tuesday 28th December
An early start is needed today as Claire and Joseph are driving home, and it looks like it’s on the cards for a while. Joseph is astonished at how quickly I’m dressed - it’s all down to 3 years of changing clothes behind a curtain before a nurse walks in. The car’s packed by 9.30am and we’re at the hospital a few minutes later. Just as Claire and Joseph are about to leave, Josh wakes up. Joseph is overjoyed and after giving him several huge hugs, convinces his brother to open a couple of Christmas presents. What actually happens is Joseph opens them while Josh watches, but he’s fine with that. By the time they’ve enjoyed a sing-a-long with the iPad it’s midday. With Josh showing no sign of flagging, even after they’ve left, I help him to play a Simms app where he decides to be a chef - which is somewhat ironic given that he’s been nil by mouth for months. When we tire of that, we try Monopoly Street on PS3 which is pretty good but brings home just how much slower and impaired Josh has become over the last week. We choose ‘quick game’ on the menu, but it still takes over 90 minutes Josh is tired by the time he wins and tries to go back to sleep before I can weigh him. There aren’t any working scales on the ward or nurses around to track them down, so I have to wait until he’s next up. With low levels of staff again today there’s no chance of me slipping out to eat and I make do with a couple of chocolates left over from a tin of Quality Street in the kitchen. Claire had a reasonable trip home and took Joseph swimming so he could perfect his snorkeling skills somewhere a little more challenging than our bath. The pool was packed but he weaved in and out of the other children, pretending to be a shark on the prowl. Thankfully he didn’t bite anyone’s leg off. Much to my surprise, Josh wakes around 8pm just after I’ve watched Everton draw against West Ham. He’s a bundle of energy again, totally nonsensical at times then coherent and intelligent the next, He listens to McFly while he watches Man Utd concede a last minute goal against Birmingham to bring a feast of football to an unsatisfactory close. He still has a raging thirst, but I’m happy to let him drink as much as he likes now as it leaks straight out of his stomach peg and doesn’t go near his pancreas – it’s like the old joke where a skeleton walks into a bar and asks for a pint of beer and a mop. We both sleep until 4am when the agency nurse drafted in to help out wakes me to ask what the dish full of fluid on the scales is. Given that I’d written ‘Josh’s stomach aspirate’ in big, bold letters on the top I’m a little disappointed she had to rouse me. Can’t get back to sleep so just lie there playing spider solitaire before writing up the day’s events.
Wednesday 29th December
I’m starving this morning and manage to nip down at 7.30am to grab a cooked breakfast that I eat in the room. With the bank holiday’s out of the way, for a few days at least, it’s back to normal on the ward. No sign of physio this morning though, which is just as well as Josh doesn’t look like he has the energy to move so much as a muscle. He’s awake by 11am though and itching for another game of Monopoly on PS3. Ideally we’d be playing Everton Monopoly, which some dear friends kindly bought me for Christmas, but Josh can only just hold a controller at the moment and won’t be able to manage a board game for some time. We play for an hour or two, pausing momentarily for ophthalmology to carry out a quick eye test. There’s a heart stopping moment when she tells me his eyesight has deteriorated substantially since the last test until I point out that her colleague stands much nearer than she does when he carries out the tests. The results she got from her position marry with her own previous tests and when she stands where her colleague does, the tests match his results too. Phew ! Actually make that a double phew, as Josh doesn’t need drops or an examination until Friday as he won’t be seen again until next Wednesday and it’s better to spread out the tests. Josh has a quick nap until the occupational therapist comes up, which is my cue to head off and try and get the blog up online. I fail miserably as everywhere I plan to eat that has an internet connection is closed until the New Year. I nip into Samurai instead and come back with a big rice pot filled with some kind of seasonal Thai Turkey Curry that would have Bernard Matthews turning in his newly acquired grave. Josh is in mid-poo on the commode and asking for me when I walk in which takes the edge off my appetite. By the time I’ve cleaned him up he’s wants a bath so we pack a bag and set off 20 yards down the corridor. He’s a little tearful but fine once he’s in, as usual. What’s a little unusual, is the skin on his forearms where his arm bends. It’s been horrifically dry for at least a month thanks to the GVHD but once it’s wet it looks like he’s lost several layers of skin. He doesn’t complain and the water’s not that hot, so it’s unlikely that caused what happened afterwards, but something did. Drying and moisturizing him wasn’t a problem, although his skin is beginning to resemble a well-crisped turkey straight out of the oven. It’s only afterwards that he suddenly starts screaming like a banshee. His left arm appears red and inflamed and the skin looks angry and shiny, almost like a burn. I’ve never heard him scream quite like this. ‘Help me Daddy,’ he pleads through his tears, ‘what’s happening to me ?’ I have no idea but ask the nurse to get Robert, the doctor who’d been due to see us on ward round but hadn’t quite managed it yet. He’s the best man for the job and joins us in a flash. He’s no idea what it is either but gets some ice on it and calls for a local anaesthetic cream which eventually settles it with the aid of some Ibuprofen. It flares up again about 30 minutes later, with Josh screaming that he’ll never get better and that he’ll die in here. I mange to calm him down and he tells me how much he loves me and apologies for crying, bless him. I ask the night shift nurse to limit his observations tonight as much as possible and to avoid taking his blood pressure as I think it’ll set him off again. She duly obliges and he’s settled and sleeping by 10pm when Claire calls to catch up and tell me about her ice skating session with Joseph and his cousin Stephanie at Bluewater. It could have been a bad line, but it sounded like she was saying Joseph was a natural and she managed to stay on her feet by clinging to a giant toy penguin. Whatever tomorrow brings, it can’t be much weirder than the image I have in my brain trying to picture that…
Thursday 30th December
In the end, Josh had one of his more peaceful nights and slept through until 11am. He had platelets for the second night running, but that was more because they were about to go past their ‘best before’ date rather than him needing them desperately. It sounds strange, but it’s no different to finishing off a pint of milk in your fridge rather than have to chuck it the next day. Nobody’s been in to follow up on his skin, which given how bad it was last night is a bit of a surprise. I guess they’ve been updated by the nurses so there’s no need. To be on the safe side, I’m not putting anything on it unless it starts giving him grief. A neurologist comes to see us though to hear about the deterioration we’ve seen in Josh over the last few weeks. He comes across well and asks lots of intelligent questions but it’s difficult to answer many of them as Josh varies so much day to day. He doesn’t want to wake him, so he gives me his bleep number and asks to be contacted the moment he’s up. Josh wakes 10 minutes later for a physio session while the doctor’s still outside writing up his notes. I let him know he’s awake, but despite spending another 40 minutes on his report he doesn’t pop in. The next thing I know, he’s gone. It’s a crying shame that writing up what I told him takes precedent over seeing him first hand, but I guess that’s the world we live in. Sometimes life is more about ticking boxes than making any real progress. To be fair he returns an hour later and, even though Josh is asleep, I wake him and we starts the tests or ‘games’ as he calls them. He doesn’t tell me what his conclusions are, but I can see that Josh is struggling to repeat the words ‘British Constitution' and ‘Hippopotamus’. They don’t come up often in normal conversation unless you’re an MP or a zoo keeper, but it’s horrible to see him having so much trouble with something so simple. Claire and Joseph arrive halfway through and Claire’s left wondering what’s gone on for a couple of minutes before I explain. He perks up with Joseph around and they open some of Josh’s presents from the GOSH Santa, who really pushed the boat out and brought some wonderful gifts. The play specialist looks after both the boys while Claire and I have our catch up meeting with the doctors and nurses. It’s perfectly judged but a pretty grim one. They agree not to do anything that could put Josh’s sight at more risk, even if it’s at the expense of his renal functions. Kidneys can be replaced, eyes can’t. We reiterate that we had no say in the decision that led to his blindness and that nothing should be done in future without us being involved and every possible risk considered. We don’t blame anyone and believe that what happened was so rare that it would have been virtually impossible to predict, but it did happen and is far more likely to happen again now. We also make it clear, and they agree, that protecting him neurologically is also of paramount importance. This means keeping his immuno-supression as low as possible.They are consulting with a Dermatology Professor on how they might control his skin GVHD without upping his steroids, and coincidentally, he comes up to see Josh while we’re in the meeting. Josh is trying to sleep when we return to the ward and a few minutes later the Professor returns. I met him 8 months ago when Josh’s skin first flared up and he exudes confidence and assurance. He’s unsure whether it is GVHD and, to be honest, the tests have never confirmed it which we always thought strange. He can’t explain what happened yesterday, but when he points out that the moisturizer we’d been told to use on him is anti-bacterial and would aggravate any broken skin, my guess is that his skin deteriorated in the 4 days he was too ill to have a bath to such a degree that our previously normal routine triggered it off. If I’m right it should remain an isolated incident. He discusses the use of light and photo-therapy but he wouldn’t recommend it in Josh’s case and it would mean increasing his steroids anyway. He suggests soaking bandages in a diluted steroid solution and wrapping Josh up from head to toe like a mummy. In the end we decide to try the solution, but applied locally to the worst affected areas only to see how it goes. It’s been an uncomfortable day all round, although seeing the boys together again for a short time has brought some much needed joy. Josh is somehow surviving everything life and the medical profession can throw at him and still smiling. Joseph remains a constant source of joy. Back at the flat, we share a pizza and play a few games before bed. Weather permitting , I’m taking him to London Zoo tomorrow with African hunting dogs and hippopotamuses topping Joseph’s must see list. He went with some friends a while back, but wasn’t anything like as interested or knowledgeable as he is now. I haven’t been for donkey’s year although I can still remember wondering which bright spark decided to put a fish and chip stall right outside the Aquarium. Deep fried Piranha anyone ?
Friday 31st December
Having spent half the night on my Blackberry, squinting at the tiny screen looking for discount vouchers for London Zoo, I discover that there aren’t any that you can use without a printer. Joseph and I quickly scour the local hotels, convinced they’ll either have leaflets with money-off vouchers or the concierge can offer a discount. Wrong on both counts. It takes less us than 10 minutes to drive to the zoo and the roads are so quiet we park right outside. Did we use our blue badge to avoid paying an extortionate £2.40 an hour ? How dare you suggest such a thing. There’s a queue of around 20 people picking up pre-booked tickets, but only one family actually buying them at the booths so we waltz in. First stop is the reptile house which houses a Black Mamba and a King Cobra amongst its many scaly delights and Joseph is in seventh heaven for most of the day after that – especially when we track down the African Hunting Dogs. In the Bug House, Joseph gets to hold a hissing cockroach and a millipede. It takes us around 4 hours to see every animal in the zoo, bar the penguins which have been re-housed but nobody’s quite sure where. The fish and chip stall has been moved too, you’ll be pleased to hear. We’re back at the flat just after 2pm and Joseph’s so exhausted he wants to go to bed. I call Claire to see if Josh is awake, which he is, so we head over to the hospital. The ophthalmologist has been and spotted a new haemorrhage but she isn’t concerned. Claire had a terrible time putting Josh’s steroid cream on last night and again this morning and he screamed and called her names for two hours. The boys play Monopoly Street with a little help. Josh loves it but I’m not sure how much he understands. Claire’s arranged for a nurse to sit with him for 30 minutes or so while the rest of us go somewhere to eat. It’ll be a struggle as so many places shut at 6pm. Josh wants to go to sleep which is perfect, but suddenly changes his mind and, for the first time since we got the flat, wants to go back there. It’s what we always wanted but his timing sucks. We have to postpone his drugs and TPN, cancel the nurse, pack a bag of what he’ll need while we’re out, dress him and wrap him up in blankets in his wheelchair. Is it worth the hassle ? Of course it is but it doesn’t feel like it at the time. Neither Claire nor I have eaten today and it makes us both grouchy. After a quick set of observations on Josh, prolonged somewhat because his temperature dot went missing down his t-shirt until Joseph found it, we head off weighed down like packhorses with various bags. On the way Claire has the foresights to pick up a menu from the only open restaurant we see on the way. Getting the wheelchair into the house has always been tricky, manoeuvring it down the narrow corridor and out into the courtyard is a real challenge but we all muck in and finally manage. Josh likes the fact the living room’s warm but wants to stay in his wheelchair where he fluctuates between being hot and being cold every few minutes and his blankets are on and off more often than Liz Hurley’s knickers. I set up the PS2 which plays DVDs through the TV and the boys watch Shrek 4. It’s a frightening glimpse of the future as Josh can’t hear anything until we pump up the volume to such a degree even my ears find it loud. We put one of his hearing aids in but it’s only halfway through the film that we discover the battery isn’t working. He says he can hear it anyway, so we leave him be. Claire finds a Pizza Express that’s open for Joseph and I set off on a restaurant tour picking up pizza and dough balls for junior and an Indian for us. I get a free bottle of Cobra beer at the Indian and a free poppadom to make amends because they hung up before we finished our order. They were also very confused over the name and it’s under the name of Mrs Jon. We settle down to eat with Josh in his wheelchair as close to the TV as possible, Claire and Joseph behind him on the sofa so he can’t see what Joseph’s eating and me perched on the table. Claire and I crack open a bottle of wine. Two hours later I head back with Josh after we all wish each other a Happy New Year. Josh is dreading having his cream on again but it’s surprisingly painless for both of us, partly because I don’t use rubber gloves and use a cloth to apply it instead, but mostly because Claire’s already done the hard job by doing it yesterday. Josh settles quickly and the nurses catch up on his IVs over the next couple of hours. I drift off writing this and wake up just before midnight. And so 2010 comes to a close with the family apart. It’s not been a vintage year, that’s for sure. It’s strange how we measure our fortunes in years. I guess we do it because it’s the easiest way of putting the bad things behind us and starting again, but of course it’s nonsense. Tomorrow will be just another day and the year, no matter how kind it is for us, will not be an easy one. That’s okay. Claire and I have had so many good ones together we can’t complain. The same can’t be said for Josh. Looking back on a year that started full of hope, it’s hard to remember anything but despair. Josh has been in a coma for two months, lost an eye, most of his hearing and can barely recall a time when he didn’t lie in bed in the same darkened room, never knowing what’s going to happen to him from one minute to the next. He’s lucky to be alive, but his quality of life is virtually non-existent. He remains a true inspiration for his courage, strength and spirit but with no end currently in sight, you have to wonder how long he can keep it up. Joseph has matured way beyond his years and continues to surprise and delight us with his energy, sensitivity, quest for knowledge and wicked sense of humour. He still enters 2011 never knowing when he’ll see his brother next or who’ll be picking him up from school. Claire and I soldier on. Having lived apart for 6 months and under enormous stress pressure for so long we’re used to it, but it doesn’t make it any easier. Getting Josh well enough to come home is our main priority but it will bring a completely different set of problems with it and in many ways will our toughest battle. It’s still a long way off as the chances are, once he’s discharged from here, he’ll be living at Tadworth for another 6 months to a year. It will be much harder for us there, but hopefully much better for him. Hope never dies, you just don’t think about it too much. Our lives are about seconds, minutes, hours and days rather than weeks, months and years. When we lost Alex, we stopped thinking about the future because sometimes it just never happens. Claire brought the ‘News Shopper’ up to the flat with her, but I don’t think she’s had time to read it. I skimmed through it in the bath and was delighted to see that the ‘grave robbing staff’ at Beckenham Crematorium, who removed and threw away nearly all the ornaments in Alex’s private garden last February, have made the Top 12 stories of the year. Yes, it’s up there with the Biggin Hill pantie pincher who steals women’s lingerie off washing lines and cuts it up in his bedroom and the story of a vindictive crow that only attacks blonde joggers. Don’t you just love local papers ?
Saturday 1st January
So a Happy New Year to you all ! Josh has another peaceful night and only woke up a couple of times which meant I slept too. I watched about 5 minutes of the fireworks last night, but when they switched to Edinburgh in total darkness as their display had finished, I switched off. The hospital shop is closed again this morning when I nip down to buy a paper which means I have to run down the street to the nearest supermarket. It’s no hardship but I can’t leave Josh for long in case he wakes up and needs the toilet as the sides of his bed are up and he won’t be able to get out. Not for the first time I’m walking the streets of London in my slippers but I’m not the only one. On my way back I pass a young mum wearing pink fluffy slippers making the same journey for the same reason and a few yards ahead there’s another mum in her dressing gown with a towel on her head. We’re a funny lot at GOSH. Josh sleeps soundly and doesn’t even wake when Claire and Joseph arrive. Claire’s packed everything up at the flat so all I have to do is load up the car. It looks like I forgot to display our blue badge yesterday after returning from the zoo, but I seem to have escaped without a ticket. My guess is that the traffic wardens of Camden sneaked off home early, rather than they let me off as it’s the season of goodwill. I park outside the hospital and pack a few bags in from there too, including my present from GOSH which was an Adidas Body Spray and Shower Gel set. It’s a lovely gesture that I’m trying not to read too much into and take as a personal slur on my hygiene. Joseph makes a last minute dash to the loo before we leave. He sometimes needs me to help him do up his top trouser button or popper but today he’s fine as he has what he describes as ‘ a hooker’ in his pants. Wayne Rooney would be proud of him. With London nursing a hangover from New Year’s Eve, the roads are empty and we’re home in record time. We have a great afternoon together, although I have to raid the freezer for lunch and dinner because I couldn’t face driving to the shops to stock up. It’s good to be home, even though I have nearly 2 weeks washing to do and the Christmas tree and decorations need to be taken down as I’m unsure when I’ll be home next. There isn’t much washing from Josh as he’s naked most of the day under his sheets. The only t-shirt of his that I do have needs shaking out vigorously as it contains enough dry, flaked skin to make a full sized Michael Jackson look-alike. Claire phones around 6pm to say that Josh has only just woken up and to ask a PS3 question as they’re playing Monopoly. Joseph’s out like a light by 8-30pm and I’m looking forward to a shave, a nice hot bath and a drink. I don’t normally make New Year’s resolutions but, in spite of my gift from GOSH, I’ve decided to stop to using spray deodorants. Roll on 2011 !
