Monday 9th November
Not going back to GOSH until Wednesday means my longest stint at home since this all started at the beginning of September. With everything going to plan with Josh at the moment it’s difficult not to start thinking about the future and it’s scary. Living day to day is far easier than tackling what lies ahead once normal life is resumed. Claire has already started gathering information for Josh’s disability and carer allowances which unfortunately not only stop when he’s been in hospital but have to be reapplied for and resubmitted afterwards. Then there’s schooling. Again Claire’s been on the case, we’ve seen a number of secondary schools both private and state and have a short list, but chances he’ll need to go to a special school next year for both health and learning reasons. Apart from the social aspect of mixing with children again, he’s actually missed at least 12 months of schooling since being diagnosed. Add to that a memory retrieval problem nobody seems to have come across before and it will be an uphill battle bringing him back up to speed. We’ve applied for statementing and been reassured we’ll get it but the funding system has changed since that conversation. Then there’s the small matter of work and income that we need to consider. Whilst I’m enjoying what I’m doing at the moment it’s a long way off paying the bills and decisions will have to be made about what I do next once things settle down. Life with Josh at home will be pretty much as it was before for at least another 6 months with a catalogue of drugs to administer and an overnight feed to mix and link him up to. Whilst he’ll be able to eat again soon, he hasn’t eaten anything of note in 2 years and never shown any signs of wanting to, so it will be a struggle. He won’t be able to go on public transport or in any enclosed public places and we will have to drive him to GOSH and back once a week for 6 months to have his bloods checked. Congestion charge here we come. All of this is nothing compared to his health,of course, but no guarantees come with that either so that pretty much brings us back to living day-by-day. As for today, it mostly revolves around work and chores in that order. Joseph seems to be on a snogging sabbatical at school as far as I can tell, so there’s no real news there. When I catch up with Claire she tells me Josh has spent much of the day in the playroom and on good form. Another mum told her that they’ve complained about how long it takes staff to take down infusions and how Hickman lines can clot if left longer than an hour. Think the longest wait I’ve experienced was around 55 minutes, so it’s definitely something to keep an eye on when I’m back on the ward.
Tuesday 10th November
Am still pursuing a retrospective Jobseekers allowance claim but I feel like a dog chasing my own tail and resigned to failure. Being passed from one pen-pusher to the next without getting anything close to a remotely intelligent or straight answer is wearing me down. Far more rewarding to focus on work which is what I do for the day and a conference call about a new charity campaign goes particularly well. In the garden I stretch shiny, metallic tape between bamboo posts across the lawn in a maypole pattern. It’s supposed to scare the crows away but looks more like a CSI Miami crime scene area. A murder of crows has never been more apt. Josh has been out social networking on the ward again today. When we were on Rainforest last year he knew everything about everyone there and made a pack of hospital Top Trumps that compared patient’s height, weight, oxygen levels, white blood cell counts and length of stay. Ingenious. Having an NG tube was so normal on the ward nobody ever commented on it, but whenever we ventured out of the hospital children would stare and ask me what was wrong with him. They would never address the question to him, just in case he was incapable of speech or thought I guess. Josh’s explanation was always clearer and more concise than mine. ‘My food goes down there’ he’d proclaim. It probably left them wondering how you’d shove a Big Mac and fries down such a narrow tube but it always shut them up. Having a stomach peg is far better. The other problem with his NG tube was if he coughed while you were putting medicines down there, it could shoot them across the room or straight into your face. Usually your face. It was hilarious the first time but the joke wore thin after a few weeks. The big news today is that the doctors are pleased with Josh’s progress and he could be home in a minimum of 3-4 weeks which would mean us all spending Christmas together. On the other hand they warn Claire that a boy on the ward due home in February is still there. We won’t be holding our breath but at least there’s a glimmer of hope.
Wednesday 11th November
If you’ve ever travelled into London off-peak, you’ll know that people are much friendlier and chattier than during rush hour. This means that every couple of weeks or so somebody sits opposite me, spies my large suitcase and assumes I’m off on holiday. ‘Going anywhere nice ?’ is the usual comment and it’s difficult to answer. Say yes and they’ll ask where. Say no and they’ll ask why. Say prison and they might run off, but I’ve yet to try it. I generally pretend I haven’t heard them which usually works. Today it didn’t and as soon as I mentioned the word ‘hospital’ to the old lady opposite me, I was subjected to her entire medical history warts, varicose veins and all. Train journey conversations are generally squirm inducing because they’re so public and this was no exception. When we used to bring Joseph up on our changeover days last year, he always insisted on asking me the names of everyone in the carriage This was particularly embarrassing when he’d point at women and say ‘What’s his name ? in a loud voice. When we spent two weeks living in a charity house near the hospital, he used to tell complete strangers that we had two houses – a big one in Bromley and a new one in London. Not what you really want your son to come out with in the middle of a recession. When I arrive at GOSH, Josh is sitting up in bed doing Brain Training on his DS. The few remaining hairs he has on his head are fluffy now, like goose down, and make him look even more adorable than usual. The school teacher and play therapist arrive in quick succession today and once he’s off his TPN and had a bath, we venture down the corridor to the playroom where he plays with a 4 year old called Charlotte who also looks like a fluffy duck while I attempt a 1000 piece jigsaw with her mum. At 6pm, we’re joined by 3 highly enthusiastic young volunteers that work for the in-house radio station, Radio Lollipop, and we make an impressive fish mobile together out of paper plates. Shades of Blue Peter and sticky back plastic. After they leave I manage to dust off the unused Playstation in the corner of the room and we play FIFA 10, which I brought up from home, until the batteries start to go on Josh’s various IV pumps. Rather than unplug the PS2 to recharge them, we decide to call it a night and Josh sprints back to the room trailing his machines behind him and desperate for a wee. Two minutes later he’s fast asleep and no doubt replaying his winning goal against me in his dreams
Thursday 12th November
Today is the 21st day since the transplant and things have gone far better than we could have hoped for. The only fly in the ointment is the possibility we’ll have to leave the ward because of a bed shortage and return to gastro. Everyone is fighting this on our behalf as they’re ill equipped to deal with BMT protocol down there and he would be unable to leave the room at any point regardless of his blood count. We are warned they are also likely to be difficult and defensive. No change there then. Josh is up at a reasonable hour this morning and lively to say the least. When one of the doctors sits on his bed to discuss his bowel movements he unleashes a gargantuan fart with superb comedy timing just as she finishes a sentence. Luckily we all find this hilarious especially the doctor herself once we’d pick her up off the floor. The comedy continues when Josh’s teacher arrives just as he asks me a question from a football quiz. I get it wrong and he shouts the correct answer ‘It’s Holland!’ at the top of his voice. His teacher, Helen, mishears and assumes he so excited about her arrival that he called out ‘ It’s Helen!’ and unwittingly yells back ‘ It’s Joshua !’ Josh finds the whole scenario bed-wettingly funny but fortunately stops just short of wetting his bed. His giggle fit doesn’t stop until school is over so I’m unsure whether he managed to cover any curriculum work or not. In the playroom our fish mobile is still standing, or hanging to be more precise. Radio Lollipop will be back on Sunday which is a welcome relief for parents as almost everyone else in the child entertainment business finishes at 5pm on a Friday if not before. Radio stations in hospitals are a bit of an anomaly these days now children have so many other forms of entertainment at their fingertips. Last year they popped in to see us a number of times and Josh even had a request played on the station after getting a question right in a quiz. This caused great embarrassment all around as the Radio Lollipop crew in our room had no idea where to find the station on the TV in our room, I eventually located it sandwiched between the Bahrain news and the Dubai light entertainment channels. Tonight I tell Josh only to call me in an emergency whilst I’m in the bath. True to form he waits until I’m fully immersed before shouting out. This time I emerge dripping wet only to be told that there is a Harry Potter version of Cluedo out this Christmas. Thank goodness he’s alone this time as my towel gets caught in the door as I rush out. Having a bath every night for the last 9 weeks means I am now so clean there is an audible squeak when I walk. Forget about removing dead skin, it’s a miracle I have any skin left at all…
Friday 13th November
Whilst I’d never call myself superstitious it’s difficult not to approach Friday the 13th with some trepidation this time around. Things appear to be fine as Josh wakes at 9am and wants to do Brain Training, but an hour or so later we’re told that he will need another blood transfusion. We schedule it overnight so it doesn’t mess up his social life too much. Otherwise things remain stable. He has a urine infection at the moment but it’s the same one as most of the patients on the ward and shouldn’t cause him too much trouble. Josh’s teacher arrives early while we’re still colouring in the playroom. One of the student nurses has joined in and looks a little upset when we take her felt tip pens away and return to the room. On my way out to lunch, my lovely gay, black cleaner friend tells me I look ‘very dapper’ with my Sansomite shoulder bag. I have so pulled. Just wait till he spots me wheeling in the powder blue suitcase. Lunchtime sees me tucking into a mammoth club sandwich at a nearby greasy spoon. As I pay the bill a passing builder tells me to ‘Cheer up mate, it’s Friday’. I hate people that do this. Claire had it on the tube the day her nephew died. ‘Cheer up love, it’ll never happen’ he’d shouted out, when in fact it just had. I tell Bob the Bungler that every day is pretty much the same for me as I’m looking after my son who’s just finished having chemo at Great Ormond Street. My answer has the desired effect and after seeing his jaw drop and listening to his groveling apology, I leave feeling much cheerier indeed. At home, Claire has been having a bad time with the school admissions people as the form she filled in almost a year ago to get things rolling on Josh’s statementing hasn’t been sent in yet because the educational psychologist has been ill and forgot to pass it on. This throws all our carefully laid plans up in the air. You’d have thought that with Josh on steroids, we could get him into any school in the country on a sports scholarship - provided they didn’t drugs test him first. Arrive just as Josh’s teacher concludes the day’s science lesson. This involves an exploding vitamin c tablet which takes 10 minutes to clean up. Thankfully I never change his sheets until early evening. Back in the playroom Josh designs and makes a ‘Wash your hands’ poster to go on his door. Ironically this leaves his hands covered in paint, glitter and glue. It’s turning out to be a messy day all round. We whizz off to the gym, being careful not to get into a lift with anyone else. Josh goes through a gentle workout routine which he will repeat down there twice a week. We high five each other when he beats his lap record. The rest of the day holds no real surprises and by the time we settle down to watch a dvd I’ve almost forgotten today’s date. Maybe our luck is changing.
Saturday 14th November
Don’t think I’ve mentioned it before, but none of the nurses call me by my name here. I’m only ever referred to as ‘Joshua’s Dad’ or just plain old ‘Dad’. At 50 I'm probably old enough to be their father, but that doesn't make it any easier. If anything it makes it worse. Having a 19 year old student nurse winking at me when I’m lying in bed and asking ' How are you this morning, Dad ?‘ makes me feel like I've woken up in someone else's life. 'What was his weight yesterday, Dad ?', ' Did you give him his 6 o'clock meds, Dad ?', 'How many stools in the last 24 hours, Dad ?', ' Can you pick me up from a party tonight, Dad ?' That last one isn't true, obviously, but you get the picture. Life's confusing enough without suddenly being burdened with fifteen or so daughters I never knew I had. Worryingly there are at least two senior nurses that look old enough to be my mother who insist on calling me Dad too. Today’s nurse, Kate, is as good as they get. Organised, caring, warm, efficient and easy on the eye, all of which means she couldn’t possibly be my daughter. The day has dragged as there are no teachers or play specialists in at the weekends to give me a break from Josh. Delightful that he is, I didn’t sleep much last night and have started to go a bit stir crazy today as I haven’t left the ward at all. He is fine, I’m happy to report, having had new blood and been topped up with his 20 hour feed whereas I’ve only had one slice of toast since my run-in with the builder yesterday lunchtime. It doesn’t help that my back’s gone again. Whether it was putting a power point presentation together this morning propped up on two pillows, sitting in a toddler chair that’s too small for my bum for two hours while being thrashed at FIFA 10 or crouching in the wash basin for my fourth bath in as many days I’m not sure, but it sure is painful. After a full-on day in the playroom we are both sitting in the room quietly waiting for X Factor to begin. I’m writing the blog, Josh is reading ‘The Revenge of the Demon Headmaster’. The aerial still hasn’t been fixed and it took me 20 minutes to strap it to the wall with surgical tape in order to get a snowy, barely watchable picture. Thank goodness health and safety aren’t in at the weekend...
Sunday 15th November
My back has totally gone now. The aerial didn’t make it past Jamie Afro’s performance last night and I spent the next hour or so holding it in position whilst doing yoga-like contortions on the bed so Josh could watch. That reminds me, I forgot to mention the pop video we made yesterday. Josh used a mirror special effect on the laptop webcam to make him look like identical twins and sang and mimed his way through a Black Eyed Peas song pretending to be John and Edward. Must stick it on You Tube when I’m home and see if we can get more hits than Susan Boyle. Also forgot to mention that Claire’s nephew, Richard, who’s suffered with Crohn’s since being diagnosed at 12 and had major surgery as a result, managed to raise £600 through donations from guests at his daughter’s christening. Richard lost his brother, Stephen, to Crohn’s related illness 20 years or so ago and they both spent long periods at GOSH. The money will go exclusively to Fox Ward to buy much needed hair clippers, as the ones we put an APB out for never materialized, and even more needed Christmas presents for the children here – hopefully not Josh as he should be home before Santa does his rounds. It should more than cover new aerials for all the rooms too. When Alex died we asked people to make donations to GOSH rather than send flowers and raised a sizeable donation that went on medical equipment and Playstations, never thinking that we’d end up here at the hospital playing on one. Funny old world. On Peter Pan ward there’s a framed, original sketch by the sculptor of the Peter Pan statue that stands outside the hospital, with a written dedication to Alex. The message is the same as the one on his headstone at Beckenham crematorium, ‘ Gone to the second star on the right, but forever in our hearts’. And of course, he always will be – even Joseph talks excitedly about what it would have been like if all three of them were here together and he never even met him. In the hospital, Sunday is definitely a day of rest for whoever stocks the kitchen. There is no butter, bread or orange squash and I pour the powdered remnants of a cornflakes box into a bowl with a cartoon crocodile painted on its bottom for breakfast. When Josh wakes, I venture out in search of food and an aerial lead so he can watch X Factor and I’m a Celebrity tonight. I blame Claire whose trashy TV habits have changed him dramatically and stopped us watching serious educational programmes like Ben 10 Alien Force and Dr Who. Most of Holborn is shut on a Sunday – even the newsagents. The first open shop has a sign in the window declaring Bangladeshi Frozen Block Fish is in stock now. I can only assume this is a much sought after delicacy given the size and prominence of the announcement, but decide to pass and find a Tesco Extra open a few hundred yards further where I stock up with Kit Kats and a Pot Noodle. Maplins is open, surprisingly and I return with 5 metres of aerial cable which gives us a TV picture that’s far from perfect but better than nothing. Josh complains of tummy pains and reads and it’s gone 3pm before we set off for the playroom. Lose track of time in there and we have a mad rush to bath and change before his infusions arrive and he’s linked up again. Paul Veys, one of the top dogs on the BMT ward was on X Factor tonight, not singing thankfully, but talking about the truly wonderful work they do here. For all our gripes about the day-to-day issues, they do perform miracles here and hopefully Josh will be yet another in a long list of successes.
