Thursday 26th August
Well, it looks like my plan to update the blog once a week has already bitten the dust. Due to overwhelming support from a number of friends and a quite extraordinary turn of events at Great Ormond Street, I’m back to reporting our lives on a daily basis. Wednesday night saw me ankle deep in rainwater with our porch flooded again and a similar story in the cellar where it was dripping through the ceiling as well as leaking through the walls. It took me a good hour to clean everything up. The sooner our handyman, Willie Williams ( seriously, that’s his name ) can get his hands on Claire’s big butt and get it in the right position, the better. Thursday was an extraordinary day on many levels. Nothing of any real note happened during our handover. Josh had slept well overnight without Claire having to resort to too much sedation and he was on a waft of oxygen when I arrived. At around 4pm he began to get agitated again and was crying out in pain an hour later. His tremor is really pronounced now and the shaking is stopping him settling. We started him on Ketamine but it didn’t appear to calm him down at all and by the time the night shift came on at 8pm I was beginning to wonder if Josh would ever get to sleep. He didn’t. However, while I was lying on the bed watching TV ( with one headphone in and one out, so I could hear Josh) I thought I heard him say ‘ Done.’ This is what he generally says in hospital after a wee or a poo. I raced to the bed and asked him if he’s said anything. He said ‘ Done’ again and looked down at his nappy which had been empty 10 minutes ago but was now wet. I was so excited to hear him speak I almost wet myself too ! My euphoria was immediately followed by self-doubt. Had I imagined it ? A few days ago when I was nodding off, I’d thought he’d said ‘Daddy’ but convinced myself I’d imagined it. This time I was more certain. I phoned Claire to let her know and she cried. We’re both sensible enough not to get too carried too away but it’s a significant breakthrough. Astonishingly the words start to come thick and fast as the night wears on. He shouts ‘no’ loudly just before landing a right hook on my jaw when I ask him if his tummy is hurting for the umpteenth time. He says ‘Yes’ to water and starts several sentences with a really clear ‘Can I have…’ followed by something I can’t quite decipher. It’s intoxicating hearing him speak. Unfortunately, when he’s not talking, he’s crying out in pain, whimpering and thrashing around in frustration and he doesn’t sleep at all despite heavy pain relief and sedation. 3am becomes 4am as everything we do to try and settle him fails.
Friday 27th August
Before long it’s 7am and sunlight is creeping in through the bedroom curtains. I get dressed as there’s no point in even pretending to try and sleep anymore, even though I’m shattered. As the day shift arrives I nip downstairs for my chocolate milk and newspaper and run straight into one of Josh’s doctors who asks how his night was . I tell him briefly and he’s genuinely excited. By the time they all come to see us on the ward round Josh has said far more. He calls out ‘ Daddy’ which is something I wasn’t sure I’d ever hear again from his lips. He puts it into a sentence ‘ Dad, I need a wee,’ and sure enough he does one soon after. He’s also rolling from side to side on the bed on his own, rocking this way and that like a drunken sailor trying to find a more comfortable position – another good example of conscious thought. He’s still in pain and distressed though and hasn’t slept for at least 24 hours. The doctor’s file into the room with smiles and an air of expectancy. I don’t expect Josh to say anything in front of them, fearing that he’s like the toys in Toy Story and will only come to life when nobody’s watching, but when I ask him if he’s in pain he says yes. When ask if it’s pain in his tummy, he says yes. When I ask him if he has a headache he says no. As we all discuss this remarkable improvement, Josh speaks over us and says ‘ Can I have a drink of water ?’. It’s slurred and the last few words are mumbled but everybody is suitably impressed. Now he has a captive audience, Josh continues. With great difficulty he mutters ‘When…when…when…’ and I’ve already guessed what’s coming even though I can’t quite believe it ‘ When can I go home ?’ It’s wonderful and poignant and heart-breaking all at the same time and as I choke back the tears I realise I’m not the only one deeply affected by his words. After kissing his forehead and telling him something vague like ‘hopefully soon, darling ’ we move onto more pressing matters. Top of the list is how we’re going to settle him. He’s been awake for more than 24 hours now, probably closer to 30 and there’s no sign of his agitation or pain subsiding. The tremors in his arms, shoulders and hands are the main cause of the distress. Ketamine doesn’t appear to be doing anything, but the decision is to increase the background dose and supplement it with oral morphine rather than switch back to heavy or continuous doses of morphine, which makes sense. Personally, I don’t think it will be enough and ask for a back-up plan. They come up with a couple and it’s just as well. By late afternoon we decide to try a double dose of Chloral Hydrate which is a fast acting light sedative often used as an anesthetic in surgery. After 10 minutes he’s asleep and sucking this thumb. After at least 9 years of telling him to stop, I’m delighted to see it in there. With Josh finally asleep, one of the nurses sits in and I’m off for some Sushi. A couple of people have commented on the role of food in this blog and basically life is so monotonous at times we really crave oral stimulation to let us know we’re alive and as an antidote to bland hospital food. Having said that I then overdo it on the wasabi and my mouth’s so hot I’m less coherent than Josh when I come back onto the ward. Surprisingly, Josh is wide awake and whimpering again. As soon as I’d left, the radiologist had arrived to do a rather unnecessary Ultrasound that I thought we’d decided against. It’s gone 1am on Saturday morning before he settles again. During the evening the whimpering turned to screaming as he became more and more frustrated with his shaking which is extremely violent now and impossible to control. One of the most common side-effects of Risperadal is a Parkinson’s Disease like tremor, so hopefully it will stop in a few days as he’s weaned off the drug. It’s even harder to see him like this now we know he’s fully conscious and able to understand what’s going on. His suffering is truly dreadful to watch and when he calls out ‘Daddy, please help me,’ in desperation over and over again his ability to talk feels more like a curse than a blessing.
Saturday 28th August
Josh slept for a couple of hours and so did I. When he woke at 3am he was even more distressed and it took another three hours to settle him. For most of that time he was screaming at the top of his voice, but still managed to listen to reason somehow. When I explained to him that the drugs will help him sleep, but he has to try and calm down too, he says ‘ Okay’ and tries desperately to do so but the tremors in his arm are far too strong and he succumbs to crying out again within a matter of minutes. It’s even worse now as the side effects of two of the sedatives mean that he’s itching again and clawing at his eyes and face. There’s no hope of keeping his Michael Jackson glove on now and I just have to hope he doesn’t cut himself too badly. Lack of sleep is seriously starting to affect both of us. I’ve managed just 2 hours in the last 48 and feel so impotent watching him suffer. My back is a tangle of nagging pains from moving him up the bed and hauling him into new positions he thinks will be more comfortable every 10 minutes or so. In between trying to console him and changing his nappy, I silently scream and smack my face just to check this isn’t some terrible nightmare I can wake up from. Release comes around 5.30am and I clamber into bed and sleep until 8am. Josh is still fast asleep or sedated, it’s impossible to tell which but doesn’t matter right now. It’s such a fine line between keeping Josh aware enough to improve but comfortable enough not to go bananas. In all the excitement yesterday, I forgot to add that his Dutch stem cells arrived and were given late afternoon. It was a push through a syringe rather than an infusion and over a minute or so. They really stank and the smell will hang around on his breath for a day or so like stale Edam. Just to remind you, and myself, these are unmatched stem cells but they aren’t the ones that build a new immune system so his body won’t reject or fight them. They’re more like police stem cells and it’s their job to sort out the t-cells in his body – ordering the good ones to move on and go about their duty and fight his GVHD and suppressing the ones he doesn’t need right now that are more likely to attack his own body. Confused ? I still am, but it should mean we can lower his steroids again soon which will give him more of a chance to fight the JC virus in his brain. Speaking of which, yesterday was a truly wonderful day. To hear Josh’s voice again when we feared we never would was one of life’s greatest moments and to know that he’s able to recognise and understand us is joy beyond words. Yesterday, the doctors seemed to confirm what I’d hoped which was that some of the inflammation in his brain must’ve gone down for him to improve like this. At the time, we all thought he must be finally making some headway against the JC virus which would be fantastic, but having thought about it I guess it’s possible that the VZV was still there and this improvement has come about as that has finally cleared. Either way it’s good news, if it’s the former it’s incredible news. If we’d been able to do the Lumbar Puncture on Wednesday we’d probably have known for sure, but the best barometer is Josh and whether or not he continues to improve. It’s unbelievable to have him back and if the tremors are a side-effect of the Risperadal that we’re weaning him off, then we should see an improvement soon. Miracles can happen and hopefully we’ve seen the start of one here in the last 48 hours. Claire arrives around 1pm just as I’m starting to worry about where she is as she normally texts to let me know she’s on a train. Josh woke a couple of hours earlier and I changed his sheets and washed him with the radio playing in the background, which is what he wanted. I always save his hair for Claire to do as I’ve no idea how to go about it. He managed to get back to sleep with minimal moaning and is still talking, despite the heavy sedation. He’s started to say ‘Stop it’ when anything he doesn’t like happens which is quite a lot as he has his temperature and blood pressure taken and a bright light shone in his eyes every hour or so. He’s been off oxygen for a couple of days now and his eyes are far less wonky at the moment, so when he looks at you it really looks like he’s seeing you. When I leave Claire he’s still asleep and looking comfortable. There are no trains on the Victoria line this weekend which I didn’t realise until I was on the platform, but I still manage to make my train to Bromley in time to pick Joseph up from his grandparents and take him to a party at Crazee Barn. Walking him in, I spot a sign that says ‘no socks, no play’ and he’s barefoot under his crocs. They have spare pairs there fortunately, so I don't have to mug another child and steal their socks to get him in. With a friend dropping him home in two hours I manage a bit of gardening a workout at the gym before he’s back, grinning and carrying a Ben 10 balloon. Once he’s in bed, I call Claire for our nightly update. Josh is far more settled today and his shaking is noticeably better. He hasn’t said quite so much today as he’s groggy from the sedation but he’d asked where Joseph was, said ‘ Mum’ a few times and even watched X-Factor with her. As for me, I spot a can of something that looks vaguely alcoholic on the dresser. Claire had told me that our Brazilian friend had brought back her national drink for us to try. There’s a measuring cup and several sachets of powder with a picture of a lime on them. As it’s a can, I assume it’s already mixed and pour the contents into a pint glass and add the powder. It tastes really strong so after a few sips I add some Coke ( which is probably sacrilege ) and settle down to watch TV. It’s not quite time for Match of the Day so I watch Michael McIntyre’s Comedy Roadshow to pass the time and find myself laughing out loud far too much and wondering why. That’s all I can remember until I woke up on the sofa at 4.30am with a blinding headache. I’ve since discovered that the 350ml can was neat alcohol and the measure in a cocktail should be 50ml. Viva Brazil !
