Week 1 - Return to GOSH
Monday 7th September
'Every time we say goodbye, I cry a little. Every time we say goodbye, I die a little.'
My eldest son, Joshua, and my wife, Claire, left for Great Ormond Street Hospital this morning. A big part of me went with them. The rest of me will follow along in a few days when I’ll take over from Claire on ward duty. After spending 7 months living at the hospital last year, Josh is returning for a bone marrow transplant as it’s been judged to be his best hope having been diagnosed with a severe immune system problem along with a rare and aggressive strain of inflammatory bowel disease.This means I’m unlikely to see my wife for more than an hour or so a week for the next 4 months. Heaven for some, hell for us. With two children, changing over once a week means switching from being a single parent at home with a 4 year old to being a full time carer in hospital trying to entertain a bed ridden 10 year old. It’s tough. Even Josh’s younger brother, Joseph, picked up on the mood and asked to sleep on Josh’s floor last night because he’ll miss him so much. Josh appears to be pretty healthy at the moment, but I noticed he was out of breath after climbing the steps to Petts Wood station this morning. Wasn’t overly concerned and put it down to anxiety as he was checked out at the hospital last week and found to be virus free. In the afternoon however, my wife calls to let me know that he’s gone straight onto oxygen and has been diagnosed with pneumonia. Alarm bells ring as we lost our second son, Alex to pneumonia just before he turned 3 when we were on holiday in Portugal. We spent 3 weeks in hospital over there watching him struggle valiantly against all the odds before his little body finally gave up and he died of massive organ failure. It was completely out of the blue as he had always been a strong, healthy boy. When we started to worry about Josh’s health, well-meaning friends and relatives would tell us we were being silly and that we’d already had enough bad luck to last a lifetime – as if losing a child gives you some kind of immunity from anything bad ever happening again. It doesn’t and it didn’t. Thinking of Alex only serves to make me worry even more and I tell Joseph he can sleep in our double bed tonight. A few hours later, I clamber in beside him and he instinctively snuggles up to me. It’s comforting to hear his soft breathing and feel his warm skin next to mine – even if he does only leave me with about a quarter of the bed.
Tuesday 8th September
Wonderfully uneventful day followed by a flurry of activity with bad news spreading widely by the evening. Sounds a bit like a GMTV weather forecast. Joseph wakes with a smile as usual. He looks surprised that I didn’t carry him back to his own bed in the middle of the night but I’d have missed him too much. We take the country walk way to his new school and I discover an even longer but more picturesque route on the way back, picking the odd blackberry for breakfast even though I’m not that keen on them. It’s a warm, idyllic day and feels a world away from the traumas of the hospital that I know Claire and Josh will be experiencing. Spend the day balancing work on a couple of freelance advertising briefs, which is what I do since giving up employment to help nurse Josh, with more mundane household chores. Claire phones in the evening around Joseph’s bedtime and I have to speak and bathe him at the same time, which isn’t easy for a man as it qualifies as multi-tasking. Her news is that she is quarantined at GOSH with possible TB and swine flu symptoms and is awaiting some kind of all-clear before she’s allowed out of Josh’s room – even to eat.This means we’re unsure whether we’ll be switching over on Thursday. Josh’s breathing is deteriorating rapidly and he’s now on high levels of oxygen through his mask. He’s also had a blood transfusion since he came in. This in itself would probably be shocking news for most parents but is now pretty much run of the mill for us – a sign of what our lives have become over the last few years. Inflammation has been picked up on Joshua’s brain and in his lungs. We are told this is nothing to worry about, but it’s hard to see why. I eventually fall sleep, not soundly, and dream of Alex for the first time in many, many months.
Wednesday 9th September
Joseph up and raring to go long before dawn has cracked. He convinces me to paint a red Harry Potter scar on his forehead and we duel with wands over the kitchen table as we eat breakfast. Oh, the joys of fatherhood ! Later that day when I pick him up from school his teacher tells me he had a temper tantrum, It wouldn’t be the first but they are few and far between these days. Guess It’s understandable given it’s a new school and his mum and brother have been whisked away from him, but it’s still no excuse. He squirms with embarrassment when I bring the subject up so hopefully he’s learnt his lesson. Take him swimming after school and meet the new instructor - Dan, Dan the sculpted torso man. He must be all of 20 years old and looks far too good in a wet t-shirt which makes him very popular with the mums, no doubt, but I’m not sure if Joseph and I are too impressed yet. After dinner, Joseph asks to go straight to bed which doesn’t happen often. Halfway through cleaning his teeth he changes his mind and decides he’s tired, but not too tired to play Harry Potter one more time before turning in. Out comes the face paint again. Maybe I should take this up professionally.
Thursday 10th September
On train to Charing Cross straight after dropping Joseph at school. I’m met at the hospital lift by Claire in a surgical mask that makes her look like Daisy Duck. Josh’s room is air-locked so it feels like you’re boarding the USS Enterprise when you open the door and step into the ante chamber. As I put my mask on, Claire takes hers off. It allows her to brief me on what’s been happening, the various antibiotics Josh’s on, what he’s reacted badly to, which medicines he’s come off and what I need to keep an eye on during the next few days. I nod aimlessly but say little as anything I do say is so muffled she can’t make head nor tail of it. Josh hardly stirs when I arrive and does not look well. He has been mostly sleeping and his lips are dry, swollen and cracked from the oxygen. Unable to suck his thumb through his oxygen mask, he clutches a fluffy Everton blanket for comfort which, given that he’s a Manchester Utd fan, is a considerable act of bravery. Once Claire’s headed off for home, I read and work next to his bedside but he hardly stirs. Am led away for an x-ray late in the afternoon to determine if I have whatever Claire and Josh may have, even though nobody knows what that is yet. When I return I’m told I can remove my mask in the room which is a welcome relief as sleeping in it would have been a nightmare. I climb into my camp bed next to Josh and am asleep within minutes despite the bleeping of machines and constant interruptions. It’s a deep, jet-lagged kind of sleep that manages to be both disturbing and immensely satisfying at the same time.
Friday 11th September
Who was that masked man ? Not the Lone Ranger or even Michael Jackson – it’s me, unfortunately. Every time I leave Josh’s room I now have to don a mask. Far better than having to wear one in the room, but it means I can’t eat in the hospital and, as I can’t leave Josh for long enough to sneak out to a restaurant, it means I hardly eat at all. Good news really as I lost over 2 stone when we here for 7 months and had started putting it back on. The GOSH plan diet. Fast, effective but definitely not recommended. Manage to make a trip to the local Waitrose and stock up with grapes to smuggle into the room. Perfect as they can be eaten behind my mask if I don’t move jaw too much and they’re odorless so my breath doesn’t upset Josh who is nil by mouth. He once smelt a Starburst I’d had 20 minutes after I’d finished it from about 100 paces. Talk about heightened senses ! Josh’s only oral stimulation is the sponge lollypops that we’re given to wipe his lips with every hour or so as the constant flow of oxygen dries them out. He’s not keen but they’re a vast improvement on the cardboard bookmarks he munches on at home and the bogeys he slips in when he thinks I’m not looking. Alone in a darkened room with time to kill, I start watching Dollhouse on DVD as he sleeps. Knowing we were coming back to GOSH I’ve spent the last few months recording just about every programme worth watching and putting it on disc. Praise the Lord for all technology and especially Virgin V plus. As far as inventions go it’s up there with the wheel and sliced bread. Oh God, bread – I’m starting to feel hungry now...
Saturday 12th September
Let’s talk O2. Not the stadium in Greenwich, your mobile or Sean Bean’s gravely voice babbling on about free texts, but good old fashioned oxygen. Like sex and money, it’s something you never think about until you’re not getting enough and then you get obsessed. Today was an up and down day as far as Josh’s oxygen levels went. One minute struggling for breath with machines bleeping right, left and centre, the next grinning away insanely and going totally bananas because he’s on too much. It’s difficult to see him like this. Glazed over and listless he is hardly recognizable. We both had matching number two buzz cuts just before we came in to hospital as Josh will lose all his hair when the chemotherapy starts. He looked far better with his than I did, but today it makes him look gaunt and his eyes look deep set and hollow. I leave him briefly in the afternoon once he nods off to sort out mobile internet so I can work from the hospital. You can’t log on to the hospital wireless network as they’re worried about viruses, which is ironic given that we’re currently on the infectious disease ward. Resist walking into the O2 shop and opt for Vodaphone instead only to find access restricted to almost every site I try including 3 stock photo libraries and Youtube - not exactly hardcore . After a £3 call to a Vodaphone helpline and a 2 hour wait I’m up and running and working for the next couple of hours. Bathing Josh proves to be the event of the day. Having to time it between 5 anti-biotic infusions, Potassium and magnesium infusions and his TPN proved tricky enough but keeping his cannula and picc line dry is almost impossible. Managed to wake him long enough to sit him up in the bath with a portable oxygen tank balanced on the floor beside him only to have the tank run out just as I’m about to wash him because it wasn’t checked first. Back in bed, clean and refreshed Josh desperately tries to stay awake for tonight’s football only to drift off just as the Match of the day theme tune trumpets out. Bless.
Sunday 13th September
Josh’s last waking memory must’ve stayed with him throughout the night as he wakes at 6am thinking Match of the Day is about to begin. As chance would have it, it’s repeated Sunday morning and we watch Man United sneak a lucky win against Arsenal.
After that and a football board game called Title Chase, which is really rather good despite being in the sale at TK Maxx, he’s zonked and I manage to get some more work done on the laptop. When the physio arrives at noon to pat his back and make him blow bubbles I’m off like a shot for an £8.50 all you can eat chinese banquet in Soho. Manage to cram in so much food that their weekly profits will have taken a significant hit. Less than an hour later, I return to the ward with seaweed stuck between my teeth. Thankfully my mask hides it from the nurses. Josh has perked up and spots it as soon as I unmask. Did I remember to pack floss ? Our changeover plans change when Claire calls in tears. After dropping Joseph at a party she’d driven to our local station before remembering that she’d forgotten her Nokia charger and had to go back home. On returning to the station she then realised she’d forgotten her phone as well and has to go back once more. It’s late by the time she arrives and even later when I pick Joseph up and arrive home. On the plus side it meant Josh and I had time to watch Everton v Fulham before I left. Unfortunately they fall to pieces in the second half and lose much to Josh’s delight. Too tired to do anything once I’ve bathed Joseph, I fall asleep reading him a story. Not sure which one of us went first but the smart money’s on me.
Week 2 - A turn for the worse
Monday 14th September
Had planned to drop Joseph at school then drive to Bluewater to see early showing of Inglorious Bastards, but decide to stay at home instead as it’s sunny and I can work in the garden. It clouds over and begins to rain whilst I’m changing my shoes. Call Bromley Jobcentre instead as my retrospective Jobseekers allowance claim has been returned with a note to say I’ve missed a section out and it can’t be processed as I’m not registered for Job seekers allowance. When I phone them a helpful voice tells me this is nonsense and to bring the form straight to them which I duly do before they change their mind. Hunt unsuccessfully all over the house for clean pyjama bottoms for Josh. or even dirty ones I can wash, as he’s going through them at a rate of knots. Offer a close neighbour and her son a ride home when I pick up Joseph from school as it’s pelting down, but I’m parked so far away from it was actually closer for her to walk. After we’ve eaten, it’s upstairs to the dressing up box and we end the day dressed as Harry Potter and Peter Pan fighting imaginary pirates and wizards. Really missed Josh today and so does Joseph. Probably because I’m so rubbish at fighting games...
Tuesday 15th September
Have a meeting with a potential client somewhere off the M3 at 10.30 so leave early for school to fill up with petrol first. Joseph climbs out to help me which I’ve since heard is illegal. Fortunately we are not arrested. He then climbs into the child seat in the front rather than the back - a second bookable offence but luckily no eagle eyed members of the Bromley constabulary are around to red card me. End up far too early for school and sit outside in the car for 20 minutes with Joseph on my knee behind the steering wheel. A passing police car doesn’t look too concerned about this as we’re stationary at the time. Once I’ve taken him in and waved goodbye I head off and turn on LBC. All they seem to play are traffic warnings for every single road I’m travelling on, but a trouble free trip means I arrive early and have to wait in the car for 20 minutes again. There’s a definite pattern emerging. Meeting goes well and may lead to more work which is all I can ask for. Back in time try and find a Harry Potter sticker album for Joseph. No success but abuse our disabled badge several times on my search. Still avoiding arrest, I head home with Joseph determined not to venture out of the house again, just in case I push my luck too far.
Wednesday 16th September
Had heard that things were bad at GOSH from Claire but nothing prepares me for what I find. We’d intended to meet away from the hospital and catch up over lunch but Josh’s condition has really declined. This means I arrive starving and don’t get to eat at all today. Josh is really tearful and passing almost constant diarrhea – every indication his Crohn’s is back. The doctors prescribe an IV steroid pulse which normally settles his inflammation overnight and gets him back on track. Touch wood it works this time. He’s attached to so many tubes and wires he looks like Pinocchio – without the big nose, obviously.He keeps asking for hugs and crying and won’t let go of his mum. Claire rushes off for more tests at another hospital up the road after explaining oxygen saturation levels to me. Not sure I got all of it but have the gist. Oh,for a normal conversation. It’s impossible to describe how down we all are at this point in time. Nobody here has the slightest idea what is wrong with Josh at the moment and every test that comes back negative just adds to the mystery. On the plus side, they have been able to rule out the adenovirus that caused Alex’s pneumonia and led to his death. It’s a small crumb of comfort but an important one. Spend most of the night comforting and hugging Josh as we trade tears and I love you’s. His cannula needs replacing in the middle of the night and whilst he sobs throughout he is so brave and, not for the first time in his life, I am humbled and proud. He flashes me a weak smile as he finally drifts off to sleep at 4am.
Thursday 17th September
Was it Dinah Washington that sang ‘ What a difference a day makes’ ? Well, just 24 little hours after seeing him at his lowest ebb ever, the old Josh is back with a vengeance. Articulate, bright, funny and totally exhausting – just the way you want him ! The day is only ruined when I finally nip downstairs for a late breakfast to find the only thing in the cafe is omelettes. That’s fine, except they’re only made from egg whites and absolutely disgusting. We’re playing Title Chase again when the play therapist arrives. Rather than interrupt and do something with Josh or go away saying she’ll come back later, she asks if she can watch and spends 30 minutes quietly trying to decipher what we’re doing with no success before disappearing to brighten some other poor patient’s day. Last time she visited she asked if Josh wanted to sit and watch a DVD with her. Money and old rope spring to mind. In the afternoon I’m informed that Josh is now under the care of the Gastro team rather than BMT. This is worrying as our previous with them is not good. The trouble is that they neither communicate or plan ahead. This proves to be the case once again when they finally appear for a ward round and argue amongst themselves. They then fail to tell the BMT team what they want to do so nothing they did eventually decide on actually gets done anyway. On a positive note, Josh has improved so much that he’s now only on the pronged oxygen mask that sticks up his nostrils rather than the full monty face mask that makes him look like Hannibal the cannibal. Now able to suck his thumb again, he falls asleep a happy man.
Friday 18th September
Josh is awake at 6.30am -wide eyed and asking what we’re doing today. My only thought is sleep but I’m in the minority. Younger voters get two votes apparently. I grudgingly blame the steroids for his extra energy boost and reluctantly climb out of bed. Phone Claire to let her know Josh’s bowels have settled down since I arrived. She is convinced it must be her and that she’s a natural laxative. I decline to comment. We meet up in town whilst Josh’s teacher is in with him. It’s almost like a date and we end up at a Belgian restaurant on Holborn High Street sitting outside in the sun savouring mussels and frites and spicy chicken. It’s as close to a holiday abroad as we’ve had for 5 years – unless you count visits to Disneyland Paris. Back home just in time to pick Joseph up from school. In true Catholic style, he confesses his sins and tells me about a couple of temper tantrums he had during the week with Claire. I can only admire his honesty and forgive him without resorting to any Hail Mary’s...
Saturday 19th September
Up early and off to the gym. No, not me obviously. Can’t watch Joseph doing his weekly workout and trampolining session today as the viewing balcony is locked. This means that rather than sit on a warm comfortable bench reading the paper, I have to spend the entire hour standing outside the door observing him through a small, dirty pane of glass just in case his urine infection means another twenty loo visits. Fortunately he manages to cut it down to just four in the first 15 minutes and then holds on until the end of the session. The day passes quickly and I spend the evening working out how to cram the week’s television programmes for us all onto as few a dvds as possible. Fall asleep downstairs watching True Blood on V plus. It takes me 4 hours to watch a 60 minute episode as I keep nodding off and having to rewind it every time I wake up. Sleep proves far more elusive once I’m upstairs in bed unfortunately with Joseph taking up more space than Hagrid beside me.
Sunday 20th October
Plans to go to an early morning Boot sale with Joseph are dashed as it not only looks like rain but it’s the wrong alternate Sunday for the one we’d planned on visiting. Instead I embark on a mad rush round the house gathering supplies like a squirrel for the weekend change-over. Let’s see, football cards, dvds, books, toys, clean clothers for Josh... hardly any room for my clean underwear and PJ’s. Never normally wear pyjamas but figure it would hardly be fair on the nurses, who surely suffer enough in the workplace without bumping into me au natural. Walking through London, Joseph spots a Pizza Express logo and leads me in by the hand to ask for a large plate of dough balls and garlic butter. We pop into two cinema memorabilia shops where I’d looked for Harry Potter toys for Joseph only three days before but had no luck. Thinking I’m on safe ground, I tell him I’ll buy him something if we see it. We walk out with two 4 inch action figures of Ron and Hermione and a full size replica of Harry’s wand. Make mental note to remember new stock comes in every Saturday. Josh and mum are waiting at lift. Josh is in a wheelchair. It’s great to all be together as we hadn’t imagined it would happen until after Christmas. The only reason Joseph is allowed up is that Josh’s BMT treatment still hasn’t started yet because of his pneumonia. A family game of Top Trumps is followed by a catch up with Claire on white and red blood cell counts while the boys play. Not our most romantic hour ever but necessary and hugely informative. Wave goodbye and bath Josh. Far easier without his oxygen mask although still difficult to keep his picc line dry. We stay up for Match of the Day 2 to see Man Utd beat City with a 97th minute goal. Thankfully there’s no nurse taking Josh’s blood pressure or pulse at this point otherwise he’d have been back on the critical list. He falls asleep with a smile on his face sucking his thumb. I follow suit around 15 minutes later – sans thumb.
