Monday 13th December
Once Joseph’s been dropped off at school in the freezing fog, I drive up to London with Josh’s new wheelchair in the boot. Claire’s just about to give him a bath and I take over while she packs. Josh’s hands are dry and flaky and ravaged by eczema and his legs are starting to itch again. He sleeps until his teacher arrives at 1.30pm but is too tired to sit up and has to make do with watching her make a Christmas stocking to hang in his room. It’s only just big enough to take a small Satsuma or a large cheque from Santa – let’s hope he brings the latter. An Ophthalmologist arrives to put his drops in just after school finishes, but despite promising to come back within 30 minutes it’s closer to 2 hours before he returns which means I have to cancel the volunteer that was going to sit in with Josh and don’t get out. Josh just about manages to stay awake until his eye examination, but it’s hard work for both of us. I’m told he has two haemorrhages in his good eye which is news to me and very worrying. Pushing for a further explanation, I learn that it’s only one but it’s dried up in the middle which makes it look like two. His right eye is becoming ‘de-pigmented’ and looking yellow rather than red. Just when it looks like Josh will sleep all day and all night, I manage to wake him by turning on the TV to watch Man Utd vs Arsenal which is live on Sky Sports. He’s very animated and vocal throughout and his team win despite Rooney missing a penalty. My old friends, the Chilean miners, are at the game as guests of Sir Bobby Charlton. One of them was quoted as saying ‘ It was dark, dirty, dangerous and depressing. There was no electricity or running water and we feared for our lives.’ I’ve been to Manchester on several occasions and he’s not wrong…
Tuesday 14th December
Our best night’s sleep in months without so much as a peep from Josh for over 6 hours. Not sure if I’ll ever sleep again though as our new bed has arrived and it’s yet another hospital blunder. It’s shorter than our previous bed, but unless you’re Peter Crouch that’s not a problem. Unfortunately it’s the Mount Everest of beds and towers above everything else in the room like the Gherkin does over London. When I sit on it and dangle my feet over the side they’re 6 inches off the floor and I feel like a budgie on a perch. All I need is a mirror some millet and a ladder to get up and down. Who’s a pretty boy then ? Quite how the mum’s will take to it is anyone’s guess and why they’re replacing the existing beds after just a few months I have no idea. The mattress is rock hard and whilst there’s a huge amount of storage space underneath it, you can’t access it unless you haul the mattress off first. Mad, mad, mad. Thank goodness there’s an oxygen tank and mask near the bed as I might struggle to breathe at this altitude. Ward round is okay but there are no answers or timeframe for the situation we’re currently in. Claire noticed a letter in Josh’s file at the weekend that confirms his donor’s immune system is forming antibodies that are attacking other people’s platelets. When I bring this up they aren’t aware of it, which doesn’t look terribly professional, but cover that off by saying it simply confirms their decision to give him matched platelets. They are currently stable but he’ll need more before going into surgery tomorrow for his lumbar puncture. There are plenty of other things discussed but nothing I need to bore you with right now other than his bone density scan came back with a Z minus 1 score which is okay and means that Calcium and Vitamin D can be used to build up the parts of his vertebra that have been softened. The rest of the day follows a familiar pattern with Josh asleep for the most part. Not for the first time, one of the nurses gives me another patient’s diarretic instead of boiled drinking water which is pretty much unforgivable. Luckily we realise before Josh has taken a sip. His teacher doesn’t turn up for some reason which is most unlike her, so I don’t get out again today. Yesterday she told me that in all her years of teaching she’s never met such an extraordinary and resilient boy. It’s hard to disagree. Josh wakes around 6pm. We enjoy a couple of hours of TV and it’s nice to hear him laughing again. He asks me about his operation tomorrow but appears remarkably calm about it and when I try to draw out of him if he’s worried about anything he says not. He is fed up with living in hospital though. It’s not much of a life, it has to be said. Once he’s asleep and we’ve gone through the normal fan on, fan off, blanket on, blanket off routine, I climb up onto my new bed to finish my book. Hopefully I won’t forget how high up I am in the middle of the night and tumble out when Josh calls out. I’m a bit worried about getting nose bleeds at this altitude too…
Wednesday 15th December
Just before I nodded off last night, it suddenly occurred to me that Josh should be nil by mouth if he’s in theatre in the morning. The nurses haven’t been told and his feed is scheduled to start again tonight which makes no sense under the circumstances, There’s nothing in the hand over notes but they manage to find out that his allotted time is 10am which means he shouldn’t have any feed and no water after 7am. It’s another example of sloppy communication. I wake up with a stiff neck and back from sleeping on my tombstone of a mattress and am told at 9.30am that Josh’s surgery time has changed because he has norovirus. You’d have thought somebody would have worked this out earlier as he’s had it for nearly 4 weeks. We wheel Josh downstairs around midday and I give him a big hug as he’s put under anaesthetic. Claire arrives 30 minutes later while I’m back on the ward waiting for him to recover and unpacks while I collect him. Josh is a little groggy and grouchy after being put to sleep but soon livens up and is more active than I’ve seen him in weeks. The three of us play a couple of games of Monopoly Deal together and it’s a real joy. The arrival of his Occupational Therapist a short time later means Claire and I can grab a bite to eat before I head off. I say ‘off ’ rather than ‘home’ because I’m taking the long route back to Bromley tonight via Cineworld in the Trocadero to see a cool movie called ‘Monsters’ and then onto The Union club to meet some ex-work colleagues. It’s a good night with lovely food and company and I’m glad I went along, but it’s becoming increasingly difficult to relate to the real world and I leave just before pud arrives. Partly because I don’t want to miss the last Bickley train and have to walk uphill from Chislehurst lugging two huge bags, but mostly because I’m shattered and need a comfy bed that’s isn’t like something out of ‘The Princess and the Pea’ story...
Thursday 16th December
The warm welcome Joseph gives me when I pick him up from his Auntie’s house is more than enough to keep out the plummeting temperatures. Once he’s at school it’s into Bromley to pick up a couple of last minute Christmas presents for the boys. My plan to spend the rest of the morning wrapping is thwarted when a bizarre statement from the Inland Revenue drops on my doormat asking for £5000 due to an overpayment from 7 years ago. The day is spent hanging on the telephone like Blondie waiting to talk to someone who can explain what’s going on. Nobody can so I rummage through all my old paperwork to eventually discover the demand has nothing to do with 2003 at all, but is simply what I was expecting to pay them in January for 2009/10. I waste another hour getting through to them and pointing all this out by which time Joseph needs picking up from school. For most of his tennis lesson he’s the only one there and has a wonderful time volleying the ball back at the teachers and nearly decapitating me on more than one occasion. Once he’s in bed I sit down and wrap all the boy’s presents. It’s becoming increasingly difficult to imagine how Christmas day will play out. Claire tells me we have the flat round the corner now rather than the house which means no stairs and, provided Josh is up to it, we can all sit together in our very ‘own’ living room to open our presents on Christmas afternoon. No doubt just after Top of the Pops and before the Queen’s speech…
Friday 17th December
Snow is falling as I pack the car up with Josh’s Christmas presents and head into town. It’s Joseph’s last day at school and the playground is taped off like a crime scene to avoid parents or children slipping on the ice away from the main path. Parents have further to fall if they slip up, so I’m all in favor of the decision – especially at my age when your bones are brittle. As I approach the Elephant and Castle there’s a blizzard and by the time I reach the hospital, the Capital’s streets are white with snow. Josh is asleep and Claire is understandably eager to head back before the snow gets thicker. We have just enough time to sit through ward round together. They have detected JC in Josh’s brain again, although at a relatively low level. They will continue to slowly cut back on his ciclosporin rather than reduce his steroids but will need to keep a careful eye on what happens as this will leave him more vulnerable to GVHD. Elsewhere, the belief is still that his new immune system is fine in that it is producing good lymphocytes , but it is still very suppressed by drugs and needs the chance to build itself up again. I wake Josh in the afternoon for a delayed physio session and he responds well with a little gentle marching on the spot and a few standing and sitting exercises. As soon as he’s finished he wants to go out. I wrap him up in several tops, socks, blankets and hats and venture out. It’s well over an hour before we return having found a present for Joseph and picked up some olive oil for Josh’s dry skin. Having been round several stores without comment, it comes as a huge surprise to be told off in the hospital shop because our wet wheels are dripping on the floor. Short of abandoning Josh in the corridor I’ve no idea what to do about it and decide to ignore the comment. The shop assistant follows us round with a paper towel under her foot, wiping as she walks. Josh never asks for anything in life but spots a fat, cuddly lemur which he wants desperately. He looks at me with such heartfelt, pleading, brown eyes that it’s impossible to say no. After a long, hot bath that has Josh sighing loudly with content, I moisturize him from head to toe after which he’s ready to go to sleep. Just before he does, one of the doctors who’s been looking after him for the last few months comes in to say her goodbyes as she’s leaving the ward and going upstairs – whatever that means. It’s sad to see her go, although one of our all-time favourite doctors is returning in her place. She confides in me that she has a 15 year old son who has been ill for some time and understands a little of what we are going through and has nothing but admiration for us. It’s very moving to hear this and I have to choke back the tears when she says she’s learned quite a lot from our questions and concerns and how we’ve conducted ourselves in hospital. Goodbyes are cut short as Josh is itching to get to sleep – quite literally as his skin’s so dry – so I moisturize him again and he nods off straight away, even though it’s only just gone 6pm.
Saturday 18th December
The new bed isn’t just a pain in the neck, it’s a pain in my back and bum too. I can hardly move today after another torturous night on the slab. Unable to sleep I watched most of Season 2 of Mad Men instead which took me back to a time when I was the Don Draper of my own multi-million pound advertising agency. It wasn’t as long ago as the 1960s, but it feels like it. I’ll never regret leaving because the only real choice would have been to abandon both our children. If Claire had stayed at home with Joseph and I’d worked, then Josh would have been on his own at GOSH and probably wouldn’t be alive today. If Claire had looked after Josh in hospital, then I would only have seen Joseph at weekends and someone else would have had to look after him 24 hours a day, 5 days a week for over 2 years. The agency was good to me and my only regret is that the main person I dealt with overpromised and then lied and cheated to save his face. In the face of damning written evidence, he denied everything he ever said to me. Even the European boss of the company told me he knew he was lying but there was nothing he could do. The man in question is quoted in Advertising’s ‘A list’ book as saying his unique selling point is his ‘honesty’ and I suspect I wouldn’t recognize him today as his nose must’ve grown by several feet. My day begins with Josh waking briefly at 6am to vomit. Whether his feed is the cause is something we’ll need to investigate. Claire phones in the morning and Joseph gives me a debrief on last night’s pantomime at Bromley. We’d booked tickets months and months ago thinking it would be a family outing, but as is usually the case, it wasn’t possible with Josh in hospital. The number of days or nights out we’ve had to cancel over the years is beyond belief. Joseph had a backstage pass for this one and met Wishee Washee ( or Mr Washee, as Joseph very politely calls him) and Aladdin. I’ve no idea who they were in real life, although Claire tells me Melinda Messenger was the Genie of the lamp. She’s not my cup of China but I’m sure her presence brought a whole new meaning to ‘rubbing your lamp’ for some of the dads in the audience. Claire was going to decorate Alex’s garden at the Crematorium today until the snow started coming down heavily again. I’ll try and do it if I’m home before Christmas, although I’m not sure how many decorations we have left after the Crematorium gardeners ‘mistakenly’ desecrated the private gardens and chucked everything away back in January. Josh shows no sign of waking up this morning and it’s mid-afternoon before he even gets up for a wee. He needs another blood transfusion along with GCSF to boost his immune system. London is thick with snow but Josh isn’t keen to venture out, despite saying he wanted fresh air every day. We watch the Top 40 on 4 Music and he sings along. We play a couple of games and gaze out at the snow as day becomes night. At 6pm he decides he’s like to go for a walk. The nurses aren’t keen as it will delay his many infusions, but they’ve been delayed before due to their workload or understaffing and for far longer than the hour we’re planning to be out for. Josh is wearing more layers than a wedding cake before we set off. It’s dark but warm and we spend a magical 45 minutes steering his wheelchair down slippery, almost impassable streets, round the brightly lit Brunswick Centre and past Coram Fields which is currently showing Sleeping Beauty and is home to 3 spectacular marquees which are lit up like magic castles. Josh is happy and chatty and we head straight for a hot bath on our return. He can’t stay in as long as he’d like but he enjoys every second of it before climbing back into bed. We watch Sherlock Holmes with Robert Downey Jr which he manages to follow more easily than I do and loves the bone-crunching fights in particular. Hard to believe it’s the same boy who asked me to buy him a cuddly, overweight Lemur yesterday…
Sunday 19th December
We pressed ahead with Josh’s feed last night, which remains the right thing to do, but he woke around 3am with tummy pains and vomited again. The pain moved to his chest but the doctors weren’t unduly worried. This time I stopped his feed but we’ll try again tonight, as a few blips are par for the course from our experience. I climbed into Josh’s bed so he could snuggle up to me and I could rub his tummy and chest without getting cramp from kneeling on the floor. It’s far more comfortable than my my bed, but once he was asleep I crawled back into mine and fell into a deep fluffy sleep that lasted until daybreak - and by that I mean first light rather than Adrian Chiles and Christine Bleakley waking me up. Josh sleeps again until well past 3pm by which time I’ve donned my snow shoes and ventured down Oxford Street on a quest to find 9-10 year old vests, as all Josh’s are dirty. The streets are reasonably quiet, but M&S is heaving. It says so much about the world we live in today that I count 5 huge signs dotted around the store proclaiming that ‘ We’re reducing salt faster than you can say sodium chloride,’ but only one pointing me in the direction of kidswear and nothing at all telling me how to find the down escalator so I can leave the shop. For the record, they’d sold out of normal vest packs so the best I could do was buy 2 x Man Utd ones for £7. The guy in front of me in the queue is buying men’s gloves and asks to wear them rather than take a bag. When the same assistant swipes the barcode on Josh’s vests she asks me if I want to do the same. I think it was a genuine mistake rather than her trying to be funny. Snow is falling again in Bromley so I tell Claire not to worry about swapping over as I have no shortage of clean undies and socks. The moment Josh wakes up he wants to go outside. We head for Waitrose to return the olive oil I bought to moisturize his face because I accidentally bought vegetable oil instead and it would be like dipping him in a tub of lard. Once that’s done we wander up to Kings Cross St Pancreas where we discover the domestic station has been closed and thousands of people are queuing for the Eurostar which has been at a virtual standstill for 3 days. 2,500 stuck in the tunnel for nearly 6 hours and 100,000 stranded according to the BBC - although nobody believes anything they say these days. We have a look round several of the empty shops before heading back. Josh loves his little adventures, although it won’t be easy getting out if he keeps sleeping until 3pm. After his bath we have lots of plans for the evening but once he’s moisturized and back in bed he just wants to sleep. He’s having more platelets tonight and we can only hope he perks up enough in the next few days to enjoy Christmas as it’s approaching fast. I settle down to watch The Apprentice and am far from overjoyed to see my least favourite ad man (mentioned in yesterday’s blog) advising Lord Sugar. He only says the one line and it’s vacuous in the extreme. It’s nice to see some things never change…
Monday 20th December
Just when it looked like being a vomit free night, Josh threw up violently at 8am – just minutes before his feed was due to finish. He’d had an anti-sickness drug as well, so we’re really going to need to have a rethink on this. When I start to ask around, it appears that he’s been on the full strength feed rather than a diluted version which could go some way towards explaining what’s happening. After being sick, poor Josh pleads with me not to let the physio in at 10.30am but I do. She takes it easy on him and he’s fine although he sleeps again as soon as she’s gone. Our nurse manages to track down a dietician, although it’s not the one that promised to talk to us two weeks ago and never appeared. This one won’t come up either and refuses to speak to me on the phone, so the nurse has to pass on my questions and her answers. Short on any sensible plan of action she says she’ll call back in a couple of days, but I’m not holding my breath. My plan is to either give him a diluted feed or stop it completely for two days and if he still vomits, we’ll know that’s not the cause. I suspect it might be something else. With Josh showing no sign of stirring, I start making enquiries as to what events are planned at the hospital over Christmas for the children. The answer is basically nothing as far as Josh is concerned. There is a big party but he won’t be allowed to attend and there’s some kind of travelling Christmas show that won’t be allowed onto our ward as it’s closed due to norovirus. It’s a crying shame as ‘adverse weather conditions’( to quote National Rail ) mean we might not be together before Boxing Day. A dietician I’ve never met before contacts me in the afternoon to discuss a plan. She agrees to send up a half-strength feed tonight. A few minutes later ophthalmology pop up unannounced in their usual robust manner and demand a nurse puts drops in Josh’s eyes. They’re too busy to oblige and share my opinion that they are the rudest department in the hospital. I end up doing the drops myself and tell the ophthalmologist that we’re going out in an hour. He panics at first then vows to come back before then. He does so, but with Professor Moore in tow who knows we wanted a chat with him and examines Josh’s eyes for himself. He can’t see anything to worry about at this time and we grab a meeting room nearby to discuss Josh further. The Professor is self-assured, believable and articulate and tells me they’re looking to reduce his visits to once a week in the New Year, not because he’s any safer, but because it will cause him less distress. There are things they can try to do to save his good eye should it become infected, but they are last resorts and come with no guarantees. It is a rare condition and he knows of only 5 reported cases. I raise a number of other points that you’ve read here enough times to know what they are and his answers are considered and honest. He accepts the lack of communication and will investigate what happened in the 6 days nothing was done to save Josh’s eye, but explains that it’s unlikely any of his colleagues even knew what the virus was as it’s so rare. This directly contradicts what his team has said and I point out that in trying to cover up what happened they have made up stories that severely undermine the credibility of his department. It’s difficult to argue against this and he doesn’t. There’s a rare moment of light relief when I apologise for not knowing the name of the ophthalmologist he came up with today and he has to admit that he doesn’t either. With that meeting out of the way I wake Josh, who was dozing, and we set off to explore London again. This time we head for Covent Garden. It’s vibrant and exciting and we stop to watch a man on a unicycle juggling swords much to Josh’s delight. We head back past the theatre where ‘ Oliver’ is just about to end its West End run. A hot bath later and he’s all ready for bed when he vomits violently again. It’s been 10 hours since his feed stopped so it may well be down to something else. I cancel his feed for the night and we’ll discuss things further during ward round tomorrow. Josh tries to sleep for an hour or so but can’t get comfy and we end up watching Man City vs Everton. It isn’t pretty but Everton take an early lead and manage to hang on with ten men so we both go to bed feeling happy. Me because we have another 3 points, Josh because the result means Man United will top the table over Christmas.
Tuesday 21st December
Having just read how badly the weather is affecting everybody’s Christmas, I feel a little less sorry for ourselves today. At least we only have to travel 12 miles or so in order to be together. There was more snow overnight in Kent but the roads aren’t too bad and Claire calls to let me know she’s driving in today with Joseph as soon as they’ve cleared the drive. Josh sleeps until physio as per usual but is in a chatty mood afterwards and lies awake talking away. He’s still very confused at times, forgetting the names of objects, what he’s been up to and where he’s been. The signs aren’t good, even though I’m told his lymphocytes are up again. Ward round doesn’t really happen today. I bump into the main consultant in the corridor and we discuss Josh’s vomiting but very little else. Claire arrives around midday and it’s great to see her and Joseph. I’ve been here 5 days and whilst Josh and I have a great time when he’s awake, he’s been asleep more often than not and I’ve been stuck with my own company. Claire picks up on Josh’s confusion very quickly and is as concerned as I am, although there’s nothing we can do other than keep the doctors posted. The vast majority of our Christmas presents are down here now, stored in the bottomless storage area beneath our new Gulliver-sized new bed. All the rooms have them now and several of the mums look positively Lilliputian sitting on them. While Josh, Joseph and Claire play Top Trumps, I disappear to check out the BMT flat we’ll be living in for the next week or so. The entrance is through the main house on Grey’s Inn Road where we stayed recently, but our new home is across a courtyard at the back and it’s exclusively ours. It’s very basic having just had a damp-proof course put in and is still in need of decoration, but it fills me with excitement and for the first time in months I’m really looking forward to Christmas. The idea of us all sitting in a living room together playing games, watching TV or even just sleeping really appeals to me. On my way back to the hospital, I call in at Traffic Warden HQ to ask about blue badge parking over Christmas. It would appear that we can park 24/7 in any of the pay and display or resident parking spaces in the area. This comes as a huge relief as parking in London is ridiculously expensive and moving the car from one set of yellow lines to another every 3 hours to avoid a fine would have been highly impractical. Claire takes Joseph off to eat before we leave and Josh falls asleep again minutes after they’ve gone. I don’t wake him when they return, but kiss the top of his head goodbye and head off to the car with Joseph. It’s a relatively quick and easy journey home. Joseph is an absolute delight and yabbers all the way. At home we have countless swordfights before bed and it has to be said that his general swordplay is far more adept than mine. Claire has no medical news of note but they did get out to explore Covent Garden in the rain. Josh wanted to see the posters of ‘Oliver’ outside the theatre again. We’d always planned to take him but it can’t happen now. How terribly sad. Last word of this entry is about another Hospital Dad – mine. My father was admitted back into hospital last week after a fall brought about by his heart and kidney failure, He’s very weak and frail at the moment and totally immobile, but as there is nothing they can do for him at the hospital, he remains hopeful of returning home with social care before Christmas. My dear sister, Judy, continues to be a tower of strength for both him and my mother who has also been going through a tough time for many years and a great big Christmas hug goes out to all of them.
