Monday 27th June
Today was widely tipped as the hottest of the year and for once the weather forecasters are right. Cycling to school is a joy and watching Joseph pedalling furiously through the woods on his new bike is the best possible start to the day. I’m in Bromley most of the morning looking for birthday presents and to pick up my hearing aid, which has been in for repair. After 2 hours of traipsing round the shops,I return with plenty of gifts for Josh but very little for Claire. Fortunately she’s been buying some for herself, as we do these days,so this shouldn’t be a marriage breaker. There’s a full-length electric shiatsu back massager tucked away in Josh’s bedroom and I’m pretty sure it’s not for him. After picking up Joseph from school, I venture up into the loft above the summerhouse to dig out games and jigsaws for the school’s summer fete. A few wasps are buzzing around up there and closer examination reveals a wasp nest. Regular readers will know of my previous wasp exploits so I won’t repeat them, but the plan is to go up there tomorrow and nuke ‘em. Josh slept until 4pm today but Claire managed to get him up for physio and they wandered round London for a couple of hours afterwards. Josh wanted to go to the theatre where ‘Shrek -The Musical’ is on so he could look at the posters outside. Hopefully he’ll be able to see it one day. Claire’s made enquiries and we could potentially get a box, so he avoids other people, but I’d have to carry him up 20 steps which wouldn’t be easy as his skin’s so sensitive. He asked for orange juice while he was out today, which hasn’t happened for several years. Let’s hope he’s not sick tonight as he loved it. The doctors are very excited as his lymphocytes have shot up, but Claire’s understandably more downbeat because we’ve seen so many false dawns and his platelets and neutrophils are both down.
Tuesday 28th June
It’s Claire’s birthday today and one of her friends arrives with a present just before we set off for school. Joseph hides it away, hopefully he’ll remember where. He’s staying at a friend’s house tonight, so I padlock his bike to the school shed once we’ve cycled in. I’m given another present for Claire and cycle home with a rose-covered, pink carrier bag sitting snugly in my front basket looking camper than Louis Spence. As soon as I walk through the door, I strip off and change into my wasp killer outfit - thick jumper, jeans, latex gloves and a ‘Scream’ mask which covers my whole head and eyes. If ‘Dexter’ was a pest controller, this is what he’d wear. Any wasps that survive the fly spray will hopefully die of fright the moment they get a look at me. It’s a big nest, but easy to reach once I’ve moved a few boxes around and shrugged off the dozen or so stealth bombers that emerge to defend their base and buzz around my head. It only takes a few minutes to destroy the nest and remove it. I took a couple of photos and in one you’ll see a giant wasp which is either the Queen or something straight out of Dr Who. Next up it’s book a restaurant time. With rain forecast for tomorrow, I look for the nearest Michelin star restaurant and come up with The Bleeding Heart near Farringdon. Described by Square Meal as "arguably the finest French restaurant in the City" and voted ‘The City’s most romantic restaurant’ by The Times it sounds perfect. The story behind the restaurant’s name is the bloody murder of Lady Hatton in 1626 by her jealous lover, who left her body in the courtyard "torn limb from limb with her heart still pumping blood into the cobblestones". I love a bit of romance. I book the 7.30pm slot online and get confirmation in seconds. If you’ve never used Opentable.com ( and I hadn’t even heard of it until today as I never go out) you should – it’s fantastic. The rest of the day is spent working, washing and ironing. I arrive at the hospital just as Josh is having his haircut by his Auntie and she tells me Claire’s in the playroom talking to several doctors. It all sounds a bit ominous and when I walk in the atmosphere is tense. It’s nothing terrible, but basically the hospital have lost Josh’s gallbladder. It’s hard not to laugh, especially as the chief surgeon is perched on the edge of a bright red children’s chair the size of a postage stamp when he tells us. Claire was told the news earlier today during ward round and has to feign ignorance this evening. Her performance is worthy of an Oscar nomination at the very least. The surgeon apologises profusely, even though it’s not his fault, but it hasn’t turned up at any of the labs and nobody appears to remember quite what they did with it. He plays the consequences down, but it’s a blow as tests may have revealed why it was inflamed and whether further investigation was needed. Should anyone spot a gallbladder lying around looking lost, please give us a call. I’ve checked all the sofas in the hospital, just in case it slipped down the side, but with no success. Maybe it’ll turn up on eBay. It’s like Piccadilly Circus in Josh’s room when we return with Claire and I getting changed, Josh wanting me to play Playstation, his aunt rushing off and his cousin arriving to sit in with him while we’re out. All goes smoothly and with the restaurant just a 15 minute walk away, we’re not even late. It’s a wonderfully intimate restaurant with excellent food and service and I feel like we’ve been whisked a million miles away from our sad existence of Jacobs crackers and Tivoli orange squash back on the ward. We choose different starters and desserts and try each other’s, but share the Chateaubriand for the main course and it’s exquisite. Apart from the shock of being given someone else’s bill at the end which included an £85 bottle of wine, it’s a perfect evening - even the rain held off. Josh is still awake when we return and remains that way long after Claire leaves. He wants to sleep but can’t and keeps asking for midazolam to help him. It doesn’t work. He starts itching and needs hydroxyzine and piriton, but again they don’t appear to make any difference. He starts screaming around 3am as his hands and feet are really hurting again. I’m out of bed at least 100 times during the night which helps work off my hot chocolate fondant with orange ice cream pud, but means neither of us sleep until gone 5am.
Wednesday 29th June
So one birthday down, one to go. The playspecialist is pulling out all the stops to try and get the playroom for us on Sunday for a mini-party which is a great idea, but she’s been told we can’t have it. There’s probably a very good reason for this, but nobody can tell me what it is. I’m told ‘infection control’ but that’s a department not a reason. Josh wakes screaming in pain around 9am with his feet giving him grief again. Paracetamol calms him down and he catches up on his sleep for most of the day. A dietician pops up to discuss Josh’s feeding plan which is basically to keep upping his feed and only give him TPN on alternate days – with a view to stopping it completely by Monday. This sounds fine but a few hours later a BMT doctor tells me Josh’s having it tonight and tomorrow night which makes 3 days in a row. A couple of hours later I have a protracted discussion with a pharmacist who knows exactly what she’s talking about, I finally get to the bottom of what’s happening and why. Rebecca from X-Factor is coming to the hospital tomorrow, and our play specialist has arranged for her to see Josh. It’ll be around 10am so I may not be able to rouse him, but it’s nice to know he’s on the radar. When I tell him, he’s excited but worried he’ll be shy. Josh finally wakes at 3pm and manages to make the gym. They’re careful not to put any undue pressure on his feet and just do a few gentle exercises. He has a huge vomit up there which we just manage to catch in a bowl, otherwise the gym would have to be shutdown and deep cleaned. Back in his room he watches Wimbledon for an hour before going to bed and asking me to read to him Horrible Histories. I read for a couple more hours before he goes to sleep and he has a relatively settled night, although a few bouts of tummy pain have him screaming in pain and in need of paracetamol and buscopan. He keeps begging for his green button, but sadly I can’t oblige...
Thursday 30th June
This isn’t the time or place to debate public sector strikes, but I’m surprised the hospital teachers aren’t in today. Josh can manage without it, but for many children it’s a key part of their routine here at GOSH and a rare opportunity to see and interact with other children. The unions have a lot to answer for and, if the figures quoted are to be believed, they’re don’t reflect what the vast majority of teachers actually believe. On a brighter note Rebecca Ferguson, the one true star of this year’s X-Factor, did come and see Josh this morning and he even managed to wake up for her visit. She came alone with no photographers or entourage and sat and chatted away with him for a good 10 minutes, which was just long enough. She signed a Top Trump card of herself that Josh suddenly remembered he had last night and we got her to autograph a blank page of a Dr Who notebook we got free with a comic. She even wanted to buy him something for his birthday, although I did my best to talk her out of it as he’s doing pretty well on the present front and the hospital in particular have really come up trumps once again. Josh stayed awake for a couple of hours after she’d gone, which was just as well as we finally had a visit from the hospital’s leading dermatologist who I asked to see a few weeks ago when I was worried Josh’s GVHD of the skin had changed. Within seconds of walking in, he feels the same. What he describes is a symptom rather than a diagnosis, but he’s relatively convinced it’s nothing to do with his GVHD and tells me to stop using one of the creams immediately. He’s an impressive figure and made a good call on Josh’s skin last time we saw him, but Josh’s case is so complex and we won’t really know where we are until he’s spoken with the BMT team. I leave Josh playing Yahtzee with a volunteer to buy him another carton of fresh orange juice from Waitrose and grab a bite to eat for myself. He only lasted a few minutes after I left and is having a power nap when I return. I wake him for gym and he performs admirably. As soon as he’s back on the ward I need to put his eye drops in, which he’s none too happy about. He vomits shortly afterwards. The eye doctor comes an hour or so later while we’ve playing on the PS3 and declares both his eyes stable but goes into great detail about potential problems that could develop over time. They’re all fixable but could involve laser surgery or special contacts. Josh is a shining star for the rest of the day and we have great fun. He ends up watching The Simpsons until 9pm and goes to sleep without any tummy pains or headaches looming. He keeps asking how many days it is until his birthday, but he’s asking the wrong person as I’ve been convinced it’s Wednesday all day...
Friday 1st July
I took a job yesterday which needs to be done by end of play Sunday, but is twice as much work as I’d thought. I’m up at 7am to make a start but Josh is awake 30 minutes later and wants his dressing changed. He stays awake after that for most of the morning which would normally delight me, but I find myself becoming more and more anxious with a deadline looming. I manage a couple of hours work before he begs me to play with him which I do until he’s ready for a nap. While he’s asleep I phone the client in Italy to go through what I’ve done and check it’s on the right track, which it is much to my relief. While I’m on the phone, a nurse from the surgical department walks in to update me on the missing gallbladder. Despite early theories that it was preserved in a container, it appears she mistakenly threw it away at the same time as his tube. To err is human and I think it’s fantastic she came to apologise personally. As far as we’re concerned that’s the end of it. Ward round brings no news from Pavia yet unfortunately, but I’m reassured that doesn’t necessarily mean bad news. We discuss his skin and the call is to stick with the creams he’s currently using and pencil in another skin biopsy next week, although I’d like confirmation that if it is what the dermatology thinks it is, it would actually show up in a biopsy. As the doctors leave, one of them says he needs to talk to me later about the blog as it’s developed quite a following at the hospital and has raised some concerns. This takes me completely by surprise and makes me feel sick inside for a couple of reasons. Firstly, because it’s written for family and friends and it’s our lives on show to the world. Secondly, if medical staff are reading it, it could change the whole dynamics of the ward as it puts unfair pressure on them. It’s impossible not to be self-conscious knowing that colleagues are privy to what they do and what someone else may think of them. Nobody likes reading about themselves which is why I’ve always preserved everyone’s anonymity in the blog except for the four of us. Even our family and friends are only ever referred to as grandparents or cousins. Anonymity disappears as soon as the people involved start reading it and playing ‘ Guess Who’ and that’s why I’ve always resisted making the blog public. Josh sleeps for a couple of hours, but it’s impossible for me to get any work done following this revelation. He wakes for his teacher around 2pm and carries on with his food experiments which he really enjoys. I grab a sandwich but don’t feel hungry. Josh and I have a great afternoon when I return and he sits patiently in his wheelchair while 3 doctors and a nurse enter our room to discuss the blog. The reason they’ve brought it to my attention is a fair one as they’re also concerned about the ward dynamics and keen that it doesn’t affect Josh’s treatment here. I talk far more than I should given that I should be playing with Josh, but hopefully I make some sense and put across a clear idea of what I believe needs to be done next. It’s difficult to take the discussion much further and address any specific issues as none of the people in the room have actually read it – although the GOSH legal department have. They went through the whole thing and declared ‘ He’s good.’ Whether that means they think it’s a rattling good read or they believe I’ve carefully written it to avoid prosecution is unclear. The truth is it’s always been written straight from the heart and for no other reason than to document our story for posterity and to make sure we don’t have to spend every second of our lives telling family and friends what’s going on. With Josh, just a few days can be the difference between ‘he’s doing well and should be moving to Tadworth next month’ and ‘a virus that was in his brain just attacked the retina in his right eye and he’s lost his sight.’ These are conversations we’d rather not have outside school on a sunny day while we’re waiting for Joseph to trot out of the classroom. There’s a suggestion that the blog could continue for everyone in a more black and white form, but life is predominantly grey and if you remove the heart, the facts don’t read that well. We’re well aware of the time, effort, expertise, dedication, blood, sweat, tears and real love that so many people put into looking after Josh every day, and if you scour the blog you’ll find constant reminders of this. But look at the cold facts and he’s slipped backwards rather than forwards and is a long, long way off being the boy he was before transplant. We understand how complex the issues are and try to explain them to other people, but there is a tendency for so much expectation to be heaped on medical science that people just judge the results. To write about Josh’s case purely in those terms would belittle everything the various teams have done for him here and I would never want to be accused of that. Josh lasts another couple of hours after everyone’s filed out before he develops a bad headache, vomits violently and retires for the evening. I’m so far behind on my work by now that if I’m to spend any time with him over the next couple of days, I need to work very late tonight. It’s gone 2am before I hit a wall and start writing complete gibberish as I drift in and out of sleep.
Saturday 2nd July
It’s another day, but yesterday’s news is still clouding my thoughts. I had no hesitation in telling the team yesterday what I wanted to do, which was wrap the blog up after Josh’s birthday with a last entry before finding a way it can continue in some shape or form for selected family and friends if technology allows. I also said I’d welcome a chat with the nurses if they set up an informal meeting and I’d answer any issues anyone has with what’s been written in an effort to clear the air, if it even needs clearing. It’s impossible to say because I still haven’t spoken to anyone who’s read it. I’m still game for a meeting, but the reality of is that it’s probably completely impractical and it would be better to simply offer an open invitation to the nurses to come and discuss it individually whenever they want or can. I said yesterday that nobody likes to read about themselves as it makes them self conscious in the extreme, but no names are mentioned, no faces shown and regular readers won’t know one doctor or nurse here from Adam – not that there’s a nurse here called Adam, as far as I know. Regular readers will know just how much affection we have the staff here, although we continue to be baffled by some of the strange systems and red tape that often prevents them from doing their jobs. Whilst some nurses may wonder if they’re serial bed wetters or serial dumpers, they shouldn’t because I’ll have told them and we’ll have laughed about it over the last year or so. It’s never been an issue. Very little in the blog is an issue, it’s simply our life and whilst the people around us are a vital part of it, in the blog they’re reduced to nameless, peripheral characters. I can’t believe there’s a better hospital in the world for Josh, but Great Ormond Street is ultimately just a work place and, like any other work place, it’s not perfect. Communication suffers at times just like it does anywhere else, equipment breaks down just like it does anywhere else and things get misplaced or lost every day, just like anywhere else. Okay, so it’s gallbladders that disappear here rather than company files or paperclips, but that’s just because of the nature of the business GOSH is in. We’ve always understood that, and I’m not sure how many parents do. The blog works both ways and it’s difficult for me knowing that my life has been laid bare. Whilst everyone at the hospital has had their anonymity preserved, everyone reading these posts knows just about every aspect of my life bar my inside leg measurement, which is 30 inches if you’re interested. It’s fine when it’s family and friends, but more difficult when it’s people you know less well but see every day, and another reason why the situation can’t carry on. It’s like someone found my diary in a bedside drawer and started reading it. Fortunately there’s nothing in it that shouldn’t be and you’d find a lot more revelations if I was Ryan Giggs. I’ve turned into a bit of a recluse today. My stubble’s still got someway to go to rival Howard Hughes’ beard, but it’s on the way. I feel like I don’t belong in the only place I actually have a life anymore which is a shame. The feeling’s not based on anything anyone’s said or done, on the contrary, everyone’s been fine. It’s just how I feel right now. Hopefully it will pass with time and I’m sure there’ll be plenty of that to come. Anyway, enough about the blog already. Work and Josh always take a precedent, but not necessarily in that order. Having said that, I get everything I need to do for Monday off to Italy by 3pm today as Josh doesn’t get up at all - which is fine as long he’s saving all his energy up for his birthday tomorrow. He vomited at 7am and then again just before noon, but around 3pm things take a real turn for the worse. Over the next few hours he vomits another 7 times. At one point he starts screaming and appears very confused. His head hurts and he goes into panic mode, twisting and turning and getting tangled up in his wires as he tries to get back into bed. We stop his feed, fluids go up instead and he finally settles down finally around 8.30pm. Claire had football with Joseph today followed by the school fete, so she’s been in a baking frenzy the last few days and feeling exhausted. All went well as far as I know and they will be up tomorrow after a special mass for Josh. With work out of the way until tomorrow night at the earliest, I climb into bed and settle down to watch Glee around 10pm. Josh calls out around 11pm but only to ask if it’s his birthday yet. I tell him he’ll have to wait another hour and don’t hear another peep out of him until 7am, which hasn’t happened for so long I can’t even remember.
Sunday 3rd July
Happy Birthday, Joshie ! He enjoys a little lie-in today, but as he’s only 12 and not a teenager yet, it only lasts until around midday when Claire and Joseph arrive with his cards and presents. He’s on good form and opens quite a few before we head off to the smaller playroom with a key. The room is exclusively ours for the day and has been decorated specially for Josh. The boys sit down and start doing sticker books together for 30 minutes or so before Josh’s best friend arrives with his parents. It’s a complete surprise for Josh, but he takes it in his stride and they play some of the new Playstation games the hospital bought for him. Funniest moment of the day was when Joseph started pressing the various buttons on Claire’s musical cake slicer and instead of playing ‘Happy Birthday to You’, it belted out ‘The Wedding March’. This appeared to thoroughly confuse several passers-by entering the ward to visit their relatives. Josh managed to blow out the candles on his birthday cake with Joseph’s help and Joseph managed to finish off a good proportion of the chocolate cake itself without any help at all. After yesterday’s trauma, I’d really feared the worst for today but one of the nurses has the bright idea of halving the speed of his feed and running fluids to make up the difference. It pays off dividends and Josh is as lively and happy as I’ve seen him in months and doesn’t vomit until he goes back to his room at around 6pm after his cousin and auntie have been. As soon as he’s been sick, Josh is feeling fab again and we all play a board game of ‘Fame’ the movie. Joseph is given the challenge of doing an impression of one of us and opts to scratch himself all over incessantly like Josh. A few minutes later Josh is challenged to do a tap dance and decides he wants to get out of his wheelchair to do it. It’s the highlight of the day and such a wonderful moment that we find ourselves fighting back tears of joy. He’s still up and doing another sticker book when Joseph and I finally leave and drive home. It’s been a remarkable day and better than we’d dared hope for. With a little bit of luck, and Lord knows he deserves some, he’ll have another good night’s sleep after all his exertions and be raring to go again tomorrow.
And so the blog draws to a close in its current guise, so I guess this is goodbye to many of you out there. Thanks for sticking with our story which has lasted far longer than we ever imagined and is still far from over. Hopefully there’ll be enough people who know the headlines of what’s happening to Josh to pass the news on to you. If not, I’m afraid you’ll just have to start watching Casualty and Eastenders to get your weekly fix of family soap and medical drama. Feel free to click on the comments box at the bottom of this entry if there’s anything you want to say or even just to say goodbye. Comments are filtered and I won’t put any of them online. I did have a stray one from somebody in PICU last year that said it was a real insight into what parents are feeling, and how overwhelming it all is. They told me to stay positive and keep on writing, and I will. I’ve tried to stop on several occasions, because it’s usually the last thing I want to do when I crawl into bed, but it would put too much pressure on our family to keep people up-to-date the traditional way. I know a lot of people passed the blog on to their families and friends, and whilst Claire and I were understandably nervous when we first heard that and it’s proved to be our undoing, the good wishes and support we’ve had have more than made up for it. I’ve looked into the technology of the whole thing and there is a way weekly updates can continue but it’s by invitation only which means you'll have to sign in like you would on your Facebook account. As we have so many friends and relatives we don’t have email addresses for, I’d ask anyone currently reading the blog that knows
us directly or indirectly to email me at joncanning@live.co.uk with your email address, your name ( as some people have weird email addresses that give nothing away)and what the connection is ( school, work, swimming club, Zumba class, terrorist training camp etc) and once I've sorted out access and posted the next entry in a few weeks time, I'll send you out invites to all the relevant readers.
It’s fittIng that we stop now with Josh’s birthday in a way. This time last year he was very lethargic and was only awake for a couple of hours on his special day. It feels like a lifetime ago and it very nearly was. The day after his birthday he had what may have been his first fit and was rushed to our local hospital. Three days later we were back at GOSH and you know the rest. And so the saga continues. There will no doubt be more twists and turns to come than the Nemesis ride at Alton Towers, but we’re in good hands and what will be, will be.
To any medical staff reading this, thank you for all the hard work, long hours, excellent care, friendship, dedication, love and attention you’ve given us over the years – especially Josh, obviously. I’m not writing this just because I know you’re reading it (I said it only last week when I thought the blog was private and on many other occasions over the years). I’ll stop short of saying ‘long may it continue’ though, as we are hoping to go home eventually. Now squatters rights has been repealed by Parliament we may have no choice.
I was told on Friday that other parents have been reading the blog and hope they’ve found some crumb of comfort in shared experiences. I know there are families out there with similar stories to our own who haven’t had happy endings and, having lost a son, our hearts go out to you all.
We live in hope that Josh will come home one day soon and we can be a family again. It’s possible that our proposed trip to Pavia and the groundbreaking treatment that awaits there will prove to be a vital first step towards that goal.
Viva Italia !
