Wednesday 1st December
Life’s so confusing at the moment, it’s easy to forget where I am. Last night Joseph called out in his sleep and I was up like a shot and headed straight for the window thinking I was back in hospital and Josh’s bed was there. Luckily I collided with the dressing table before I smashed through the glass. Claire and I decide not to swap over today as we’ve no idea what’s happening with the trains and both her nights out will potentially be called off if the snow doesn’t stop. It’s a winter wonderland outside but Joseph and I manage to resist walking in it until after lunch. There’s at least a foot of snow in the garden but it’s so powdery we struggle to make a snowman so settle for a snow toddler instead. It’s identical except about 3 foot shorter. We slowly defrost in front of the Aga for a couple of hours afterwards until one of Joseph’s school friends arrives for tea, which is what we call dinner up North. Both boys have healthy appetites and polish off a roast in no time. They play Playstation and we play a few board games together before we walk him back down the road and have the mother of all snowball fights on the way, from which I believe I come off worst by some distance. Claire’s not feeling all that well at the hospital – although the heat won’t be helping. The room is sweltering. Last weekend it was freezing. Josh’s temperature is spiking above 40 degrees so something’s going on but nobody seems to know what. Claire’s asked for more information on the new plan and was told that steroids compromise the immune system, but ciclosporin stops it building up again. This makes sense of the doctors’ actions, but it’s odd it’s never been mentioned before. His platelets are still horrendously low despite repeated transfusions which is also a worry and combined with his compromised immune system leaves him extremely vulnerable. The TV people who installed the entertainment system continue to confound us, either not setting the reset button or blaming the scrambling and loss of channels on the weather. Claire is told how lucky she is as some patients in the hospital have no channels at all. It makes me so angry when people become aggressive to try and deflect blame. The chances are we’ll still be at GOSH over Christmas. We’ve been offered the flat at The Sick Children’s Trust home and may well take them up on it. It’s going to be a long hard winter…
Thursday 2nd December
I’m refuse to moan about the snow as it doesn’t affect us anything like as much as it does other people. The schools are closed and we don’t have to commute to work. We have a well stocked freezer and we won’t starve. Apparently there was a train stuck just outside Orpington station for 10 hours yesterday. What on earth do you do if you’re stranded like that with no real hope of getting home ? There are no trains running today. The nightmare is for us both being stuck up in London or worse still in transit. I’m desperate to take over from Claire at the hospital to be honest, as I’m far more useful up there than I am at home. Even the sub-tropical temperature on the ward appeals at the moment, although Claire’s finding it stifling and Josh is really struggling and was back on oxygen last night. He’s not in great shape at the moment. He’s neutropenic again which, just to remind you all, means he has an abnormally low number of neutrophils, the most important type of white blood cells that are our primary defense against infection. Whether this is down to immuno-supressive drugs, poor production of the cells in his bone marrow or the mass destruction of the cells elsewhere in his body is anybody’s guess, but it’s been a problem since his transplant. He’s having matched platelets today which may make a difference and GCSF both of which could give him a boost in the short term. His high temperature is persisting and his head and body are starting to itch Graft vs Host Disease coming back to plague his skin. It’s not good and I feel so useless not being up there. Joseph’s staying with Olivia at the bottom of the garden today and I drop him off around 8.45am and trudge to the station. South Eastern is running an emergency service but there’s no sign of it as far as I can see. The promise of a train within an hour soon turns to two without anything arriving. After calling Claire, who’s seen all her plans cancelled because of the weather anyway, there’s no choice but to return home, dragging my tail and bags behind me in the snow. I leave it a couple of hours before picking Joseph up, so he can finish his lunch. The snow’s still coming down heavily when we nip out across the park to the shops and bump into Claire’s nephew, his wife and daughter who are closing their sandwich shop early after a day of ‘ carnage’ – which I think means plenty of demand but not enough staff in. A brief flurry of snowballs on the way back and we’re ready to warm up inside with a quick game of pool. Joseph is learning how to hold a cue without brandishing it as a weapon, which could take some time. We’re playing on the Wii when Josh calls us. He’s been up and about for five minutes and is stuck on Harry Potter Lego. I talk him way through to the next level and from there he’s off and running. Tomorrow’s plan is basically the same as today’s but hopefully with a train or two making a cameo appearance…
Friday 3rd December
Here we go again. After dropping Joseph off at our next door neighbour’s house I head for the station. Having checked the live timetable on the web there appear to be no delays or cancellations whatsoever. Instead I find no trains. Not a single choo-choo has chugged through Bickley station this morning or any other station between Sevenoaks and London and services are suspended indefinitely yet again. There’s a points failure somewhere but the fat controller isn’t able to tell us where it is or if anyone’s even trying to fix it. I wait 40 minutes for no reason other than everyone else is and then ski back home. Rather than sit around at the mercy of South Eastern, I pick up a shovel and clear the drive of snow. Having reversed out of the garage a few times without getting stuck, I decide to risk driving into London – based on the assumption that our road is probably the worst I’ll have to brave. My neighbor waves me off having been on hand to give me a gentle shove when my wheels start to spin round, round baby right round, like a record baby, round, round, round, round on a patch of ice. It’s an easy journey and I draw up outside the hospital less than an hour later and grab a bite to eat. Josh is in ultrasound and I meet him and Claire there. He’s already seen ophthalmology and once Claire’s gone, he has a quick catnap while I nip down to social services to pick up our luncheon vouchers for the week. Having heard someone called Colin is coming to fix our TV, I think I spot him by the lift on my way down. I don’t know him from Adam, but he looks like a Colin and he’s heading for Fox ward so I take a chance and accost him. He has a cold so he can’t come into the room, but I explain the problem and he looks baffled. He returns 10 minutes later to tell me there’s a big button in his office that should never be pushed but it has been and that it’s to blame for all the world’s problems. It sounds like the plot of ‘Lost’ but once he’s reset it we have ITV and Channel 4 so I’m not complaining. After that we’re down in the basement for several CT scans, although they won’t look at his pancreas even though it’s been requested in the notes because there’s no official form. Back in the room we catch up on a bit of TV while a maintenance team remove half the wall to turn the thermostat down on our radiator. Even as they do it, they tell me it’s unlikely to make any difference and the real problem is that this is the only room on the ward without air-conditioning. Josh has another itching bout but is fast asleep once he’s had Piriton. Unfortunately I have to wake him around 8.30pm when they pop up to do a heart echo. This was meant to happen on Wednesday because they’re concerned the amount of fluid around his heart may have increased, but the cardiologist wouldn’t wait 2 minutes while Josh went to the toilet and stormed off. Tonight the cardiologist is particularly gentle but can’t tell me whether the fluid has increased or decreased without looking at the last echo, so I have to wait until tomorrow to find out. My heart is in mouth. Luckily Josh’s is still in the right place – I’ve just seen it.
Saturday 4th December
With no snow in London, it’s easy to forget the big white blanket that brought Kent to a standstill this week. It’s not that cold and I venture outside in a t-shirt to pick up the morning paper then grab bacon and egg from the canteen downstairs to eat in the room. Josh had an unsettled night and we were up for most of it. His sheets are covered in blood from where he’s bitten his lip and his low platelets have failed to clot it. The matched platelets have worked but not to the degree we’d hoped and he has more today. His HB is low and he’ll have another blood transfusion tonight. The results of his heart echo suggest there’s no change. Thankfully his temperature has settled down but he still spends much of the day asleep. He’s a bit grizzly on the rare occasions that he stirs and tells the nurses off when they try to do his observations. According to an official survey in today’s paper, the name ‘Joshua’ just scrapes into the Top 10 of best behaved boys at school. The shortened version ‘Josh’ tops the list of naughtiest boys. I assume ‘Joshie’ is somewhere in the middle and decide to call him that for the rest of the day to hedge my bets. He’s not a happy bunny when he’s up although we do manage to watch the UK Top 20 and grab a quick bath, even though the water’s tepid. Shame the same can’t be said of the room which remains stifling and soporific despite the maintenance team’s best efforts yesterday. He’s asleep again before 5pm but asks me to wake him up for X Factor which I do. As soon as it’s over he goes straight back to sleep.
Sunday 5th December
Josh’s bed is his entire universe - so where the pillows are placed, which side he’s lying on, how many sheets are covering him are all of national importance. Not for the first time I spent most of the night hauling myself in and out of my bed to adjust his head rest by a miniscule amount to try and make him more comfortable. Combined with his growing thirst, umpteen calls of nature and a couple of vomits it’s a wonder either of us get any sleep at all. We keep the fan on all night, but it’s so hot and clammy in the room that I feel like one of the contestants in ‘I’m a Celebrity…’ Luckily the only bug in our room is the Norovirus and the worst thing I have to eat is hospital pasta. Strolling out to pick up a paper is a welcome relief and the cold air makes we feel human again. I haven’t bothered with a coat again and am slowly turning into Geordie. If the temperature drops any further I’ll be venturing out in a mini-skirt and high heels and getting an Alan Shearer tattoo. I’ve only really written about the here and now recently – mostly because the future is so uncertain and doesn’t bear thinking about. We will be here for Christmas and will continue to debate the pluses and minuses of living at Tadworth over the coming weeks. There’s a big meeting on Tuesday involving Bromley council, ourselves and the hospital that may shed some light on possible alternatives. Obviously life would be easier if he was at home but it’s hard to see how that could happen given his current medical demands, not to mention the rehabilitation he needs. The decisions we make in the next few weeks will affect not just the rest of Josh’s life but ours and Joseph’s too. There will be some tough calls to make but after everything we’ve been through we have to think about the long term, not the short. Josh sleeps for most of the day again. I can’t leave him so I just sit around slowly going nuts. Like most people, I often get a song going round and round in my head all day. Today it’s ‘Higher’ by The Saturdays, which is particularly confusing as it’s Sunday. Hopefully it’ll be something by the Happy Mondays tomorrow to back get me on track. If it’s ‘Thank God it’s Friday’, I’ll really be in trouble. I read for several hours – something I find immensely satisfying but rarely do. ‘Under the Dome’ by Stephen King is a real juggernaut of a novel about a small American town suddenly and inexplicably sealed off from the rest of the world by an invisible dome. It’s like an American ‘Lord of the Flies’ with grown-ups under the microscope instead of children and manages to shut The Saturdays up for a while. It’s 4pm before Josh even looks like sitting up. We start watching Champions League football but within 10 minutes he’s shattered again and begging for sleep. Sloppy Guiseppe is on duty today and comes to visit him but is so badly briefed I can hardly be bothered talking to him. When asked why he thinks Josh’s platelets are still being destroyed, he just reiterates why they’re giving him matched ones without even acknowledging the fact that they’re not working either. Josh must be so sick of it all by now. I am. He wakes again at 7pm and I manage to keep him awake until X Factor starts but he’s just too tired to watch. His blood pressure’s good and so is his temperature, so quite why he’s struggling so much again today is a complete mystery. We need Poirot on the case, but everywhere I look at the moment I just keep seeing Inspector Clouseau…
Monday 6th December
‘It’s just another Manic Monday’ according to The Bangles and I’m tempted to agree. Josh didn’t really settle last night and kept calling out again. I gave up trying to sleep at around 2am and started looking for Christmas presents for the boys on my Blackberry. Should have gone to Specsavers given the size of the type on my screen and how much I have to squint to see it in the dark. Josh had another blood transfusion again overnight and sleeps right up until his physio session at 10.30am. He tries hard and does better than I’d imagined but crawls into bed straight afterwards and goes back to sleep. Today’s doctor tells me that his Lymphocytes have shot up and higher than they’ve been for months. This isn’t necessarily good news as they have risen so quickly they suspect he’s fighting a virus, even though his symptoms are on the way out. It would certainly explain how tired he is at the moment. Trains are finally running again in the South East and Claire arrives at the hospital just before midday. I make my way to Victoria via Oxford Street to try and buy a couple of Christmas presents for the boys. It’s an unsuccessful trip but I stop off at Bromley on the way home and find what I’m looking for there. Back just in time to throw Josh’s dirty laundry into the washing machine before picking Joseph up from school. The snow has started to disappear in places, but it’s cold enough for icy patches to remain and it’s particularly treacherous on the pavements where I see at least one mum sliding around like Bambi on ice. I’m back at GOSH tomorrow so everything’s a bit of a rush, but it’s hard not to spend time with Joseph as he’s such good company and we spend the rest of the afternoon playing together. As we curl up in bed together to read his latest library books, he tells me how much he misses Josh and hopes he comes home soon rather than ends up in heaven like Alex. It's a comment that really catches me off guard and all I can do is give him a great big hug and try to reassure him as much as possible…
