Monday 20th September
Bob Geldof might not like Mondays, but to me they’re just another day now. Today was a particularly pleasant one in that nothing much happened. Once Joseph was dropped at school, I make a couple of phone calls then started work on three projects that are all needed this week or early next. Sitting in the sun on our new deck working on my laptop and sipping a coke, I get a tantalizing glimpse of what normal life could be like one day and, boy, does it feel good. For lunch I finish off the poppadoms and dips left over from Claire’s big night in with the girls on Friday. I’m astonished there’s anything left as there were 11 of them experimenting with cocktails all evening which should have left them seriously hungry. Strangely enough my Brazilian liqueur remained untouched, so I can only imagine word has got round about its potency. After feeding Joseph’s pet cricket which is, against all the odds, still alive after a week in solitary, I nip off to the gym. After school we take Joseph’s bike to the park and he shows off again, setting new speed records with every lap and negotiating his way successfully around hoards of schoolgirls, dogs and joggers. We phone the hospital just before bedtime and Josh and Joseph speak to each other properly for the first time in almost three months. They both declare their undying love and vow to see each other soon. Josh has had an okay day and been kept pretty busy by the sound of things with baths and tilt tables. There’s a new doctor looking after him now, but we know her well from clinic and our previous stay here last year and she’s very good. All the doctors are astonished at how quickly Josh is recovering. They have only ever known one child to pull through what Josh has been suffering from and, no matter what they said at the time, I’m not sure how confident they ever where that Josh would make it. They certainly didn’t expect his memory to come flooding back the way it has. His treatment will now focus on rehabilitation – both physical and mental and it could still be a very long time before we’re home. They are looking to reduce a number of his drugs as soon as they can as they all have such serious side effects. Josh still has a temperature which spikes several times a day but they haven’t found any infection yet. One theory is that it could be a Subdural Haematoma. This happens when tiny bridging veins in the brain tear and leak blood between the brain and its outermost layer (the dura). This could have happened as a result of the inflammation caused in his brain by the JC virus. He remains on oxygen, although quite why he’s struggling so much is also a mystery. Josh actually asked Claire yesterday what had happened to him and why he was in hospital. He remembers his fall or possible fit at home the day after his birthday and his Auntie Judy visiting him at our local hospital a couple of days later, but can’t seem to remember what happened next or coming back to GOSH. When Claire explains, he’s a little shocked at how long he’s been out of it. It must be hard to take in, even though I’d explained it a couple of days before by showing him how many Match magazines he’s missed. His hearing appears to have deteriorated since he’s been in hospital too and he is constantly saying Pardon. What a fine pair we make. With Joseph asleep I settle down to work but notice something small and brown on the floor in the dining room. As I approach it hops away, which immediately rules out my cat poo theory as they tend not to move. It’s a tiny frog and I spend the next few hours chasing it round the room before finally catching it, putting it in a bowl for Joseph to see, recapturing it twice when it escapes in the kitchen and then making a decent home for it with gravel, water and various chunks of thick bark to form an island in the middle . Given the delay in starting work it’s gone 2am before I finish, by which time the frog has settled rather nicely into its new home. Joseph will be very excited to meet his new friend at breakfast but, regrettably, he won’t be able to keep it long as it only eats live flies and meal worms and I’m not sure Claire will want to do that on a regular basis. I’m back home on Thursday, so hopefully we can release it back into the wild then to the strains of ‘ Born Free’ on my iPod.
Tuesday 21st September
Thankfully froggie didn’t escape from Alcatraz during the night and is still pretty lively when Joseph and I venture downstairs for breakfast. He thinks is may be a poisonous South American tree frog, but I have a feeling he’s wrong. Given that they have toxic skin and I was handling it all night, let’s hope so. Walking him into school, he keeps looking up at me and grinning inanely. When I ask him why, he just says he wants to look at me because he won’t see me again for two days. Bless ! There’s just time for me to take a trip to the municipal dump with some long overdue garden waste before rushing to the gym. The car park’s full and the road outside is jam packed too, so I end up parking so far away I might just as well have walked from home. I assume it’s down to the Aqua-Aerobics class that’s in full swing in the main pool, but it’s hard to believe all those ladies of a certain age and size could fit behind the wheel of a car, let alone drive one. Upstairs, the clock in the ladies gym has now been removed from the wall, so instead of mums arriving late at the school gates, they now won’t have to turn up at all. Social services should be informed immediately. Josh is asleep and has a volunteer sitting in with him when I arrive so Claire and I go out for a bite to eat while we catch up on news and gossip. We happen to choose the only café in London that serves worse food than the hospital but it doesn’t bother us too much as it’s just nice to be out together. Back on the ward, I help Josh open a few of his birthday presents dating back to July. One of his cousins bought him a brand new Man Utd shirt which he’s very excited about and is currently hanging up in our room. Another cousin sent him a pocket-sized sound machine from the States which plays 16 bizarre sounds and is great fun. Josh has a giggle fit when we tricked one of the nurses by pressing one of the buttons madly under the covers to produce a string of huge fart sounds. It’s doubtful she’d ever have rumbled us if I hadn’t accidentally pressed the wrong button and unleashed a blood curdling scream instead. Luckily the CRP emergency team weren’t called as a result. A few minutes later Josh allows one of the resident clowns into his room, which is unheard of as he really detests them. He’s only done it so we can use the sound machine on him which we do to great effect. The ward round today was conducted in the corridor earlier as Claire and I headed for the door. They believe Josh’s itching to be down to GVHD, and possibly the fluid around his heart too, but they want to leave it well alone for now as he’s doing so well otherwise. We finally got an idea of how long this whole process is going to take when Claire asked the main consultant when Josh will be out if all goes well. He was understandably uncomfortable with the question, but when I said we’d envisaged this side of Christmas if we were lucky, he only goes as far as to say it’s a possibility. As dusk descends on London, Josh is far more tired than a few days ago but is finding it hard to nod off. To be fair, every time he does a nurse comes in to check his blood pressure or take his temperature and at various points in the evening he tells them off by yelling ‘ Hey, you woke me up !’ Once he’s in a deep sleep, I call Claire who excitedly tells me she’s found another cricket – this time on our ceiling in the bedroom. She managed to catch it with her special ‘bug sucker’ and put it in the box with cricket numero uno, who was equally excited and started leaping around in delight. Before taking Joseph to school this morning, I told him that frogs eat crickets but not to worry as they can’t eat anything that’s bigger than their head. Based on that criteria, I’m never taking Joseph to Pizza Express again…
Wednesday 22nd September
It’s gone 8.45am before I climb out of bed, which qualifies as a lie-in by anyone’s standards. Josh is still asleep and stays that way most of the day. We manage to get him on the tilting table and sitting up on the edge of the bed on his own when the physios arrive, but other than that all he wants to do is sleep. At 11.30am I leave him under the watchful eye of a play specialist and make my way over to Bond Street for a business lunch at a rather swish restaurant called Mews. Basically all I have to do is eat and sound reasonably intelligent and I manage the former extremely well. On the wall of the restaurant is probably the largest wall clock I’ve ever seen, but it’s not working. This is becoming a familiar story. Is it me ? Maybe I have a face that literally stops clocks. As a result of clock watching a clock that doesn’t work, it’s gone 2pm before I realise the time and have to make a sharp exit. Luckily, I’d just demolished my chocolate tart with ice cream so it was no great hardship. Back on the ward Josh is asleep again. When he stirs I can’t convince him to have a bath so we have to make do with giving him a quick wash and a rub down with Olive oil to stop his skin drying out. This was one of the nurse’s ideas and a very good one too. Unable to get it on prescription, she recommended Claire popped out to the shops. Thankfully she resisted the temptation to buy a fancy one flavoured with garlic or chilli, but still managed to come back with something that looks expensive from Waitrose. You just can’t keep a good cook down. Josh sits up and watches Sunday’s Match of the Day with me, but under duress as all he wants to do is sleep. I manage to keep him awake for another hour in the hope that he’ll sleep better tonight…
Thursday 23rd September
What a strange life we lead. Most of the time we just get on with it and con ourselves into believing it’s normal, but it’s clearly not. Last night was a good example in that I’d call it a good night, yet Josh woke every hour asking for water, vomiting, crying out, needing to be changed or was simply frustrated at not being able to sleep over all the bleeping that goes on for hours on end if one of his lines gets blocked. He has a fever again which means that one second he's too hot and wants the fan on and his covers off, and the next he's calling for an extra blanket and a hot water bottle.On the plus side, not sleeping meant I watched a couple more episodes of Prison Break which is really hotting up. It’s not quite pure escapism as it reminds me too much of hospital. The hero is banged up in a tiny room all day and night with a cellmate who’s a little unpredictable, eating bland food, having to observe strict rules at all times and going to the toilet a couple of feet from where he sleeps. Sound familiar ? At least he knows when his release date is, whereas we still have no idea. The only saving graces are the wardens are friendlier and generally more attractive here, and there aren’t any communal showers, so I don’t have to worry about dropping the soap. Breaking out isn’t a viable option either unless my cellmate comes with me. He’s still asleep at the moment, or is he ? What if he’s just carefully arranged his pillows under the sheets to make me believe he’s in bed, but has actually escaped through the hospital’s ventilation pipes ? The day is slow to kick off. Josh is very demanding at the moment even though he doesn’t actually want to do anything. There’s an anger coming out which is to be expected as he becomes more and more frustrated with his situation. I’ve explained to Josh that soldiers wounded in action experience much the same problems as they come to terms with missing limbs or damaged brains and that he’s a real hero in so many ways and doing ever so well. He fails to look convinced. Our physiotherapists were pipped to the post for the tilt table this morning, so Josh is excused and only has to sit up and try throwing a ball. They appear to be pleased with his progress but it’s painfully slow and having seen him moving around in bed constantly, I know he’s capable of so much more on a good day. It’s so hard to see him struggle so much just to move his foot a couple of inches or reach out shakily to try and touch my nose or high-five a nurse. Recovery will be a long time coming, but hopefully it will come. Claire arrives just before lunch and I’m home in time for the mad rush to school and then tennis. Joseph’s forehand is coming on a treat and he already has much in common with Tim Henman and Andy Murray in that he hasn’t won Wimbledon either. Just to let you know, two avid blog readers are running a10km run next month inspired by Josh, in aid of the ‘The Sick Children’s Trust’. The charity provides accommodation for families whose children are in hospital with serious illnesses. We stayed in one of their houses with Joseph for 3 weeks during the school holidays a couple of summers ago and it helped us feel like a family again and made a real difference to our lives. Josh was coming to the end of an 8 month stint at GOSH and it gave him somewhere safe to escape to and start doing normal things again during the day, like playing with his brother and having a nap on a bed without a hydraulic system. They do terrific work, but constantly need funding, so if any of you would like to show your support simply log on to www.justgiving.com/Denise-and-Sally to sponsor them.
Friday 24th September
Today’s Josh news is that he and Claire changed room last night. Basically it all comes down to bathrooms. None of the ‘en-suites’ are big enough to accommodate the hoist, so we’ve been taking Josh across the corridor to a separate bathroom that’s exclusively for the use of room 7. That room was vacant but won’t be from today, so it made sense for us to move in there and the new arrival to take our room. Anyway, all it means is that we have a bigger room but no bathroom or toilet unless we venture out across the corridor, which is no great sacrifice other than more nurses will get to see me in my jim-jams in the middle of the night. Josh loves his baths and was in one for nearly an hour yesterday, which means he was probably even more wrinkly than me when he came out. Claire’s found him much the same as I have this week, very lethargic and bordering on tears much of the time. No matter how hard we try to rein in our optimism, it’s difficult not to get carried away with the euphoria of hearing him speak and communicate again, but reality is slowly setting in and the fact remains that he’s still very unwell. I’ve said before that the next step is rehabilitation but Claire is shocked to hear that one of the doctors believes Josh could be back at our local within 3 weeks. This is completely contradictory to what we’d heard a few days ago and we can only hope they aren’t suddenly fast tracking him out of here because they need the beds, as he’ll be straight back in within a matter of days. We’ve seen it happen before. At home, I spend the morning working as much as I can between washing and shopping and get a fair bit done, but have one big project left to get to grips with before a client meeting on Thursday. It’s too wet to let Joseph cycle to or from school, so I take the car to pick him then we drive down to our local park to release our baby frog back into the wild. There’s a small pond there, which in reality is just a hole in the ground with broken planks dumped in it, but it’s been called a nature reserve and is meant to encourage wildlife to the area. Froggy is out of his bowl like a shot and happily hops off into the long grass as Joseph waves goodbye. Hopefully he won’t be gobbled up by a hungry bird before we’ve gone 10 yards. Er…the frog that is, not Joseph….
