This is what I wrote a couple of weeks ago in hospital:
Life for us in many ways at the moment is a living nightmare. While we struggle to find a way to keep Scooby stable, he is constantly shaking and usually on the verge of a seizure. When he tries to move himself - as young boys do, because even if only one of their four limbs work properly, they will still attempt to move around the bed because they are not designed to sit still - he usually slips and bangs his head or gets stuck in a difficult position or brings on a seizure because of his movement. He needs us to dress him, feed him, hold a book for him and take him to the toilet. So we can't really leave his side for more than a few minutes. If one of us goes upstairs to get dressed or put laundry away, we have to make sure the other one is on duty on the ground floor. We take it in turns to sleep on the sofa as his hospital bed is in the living room, so we can be with him through the night. Richard tried going to work last week - he was only there three hours before I had to call him home, and he arrived back at the house at the same time as the ambulance. We can only seem to make it for two days at home at a time, and it’s become far more stressful having him at home than at hospital because there are more rooms, more children and more responsibilities to meet, and far less medical interventions at hand to help.
The stress on us is hard to bear but it’s far worse to see him struggling with his lot. He has rarely complained in the past, not even when his legs stopped working, but now that he can’t use his hands, he can’t do all his favourite things like colouring, writing and playing board games. He can read a little bit but we have to position the book for him and he can only manage a few lines before his eyes ‘go funny’. A lot of the time he just has to curl up on his left side to hold the shakiness back, and he watches TV and listens to books on CD or tells me what to write or draw in his activity books while he watches.
For some reason – I hope it’s due to the medication and not The Thing in his brain – his seizures have changed. They used to be short and sharp, so he would still be conscious but it would take over his whole body in spasms, but now they are shallower (sometimes we can’t really tell he’s having one – he tells us he can feel it and then we see little jerks in his hands and feet) and last for what feels like ages. We can give him rescue medicine up to twice a day if they go over five minutes, but each one lasts between ten and forty minutes and he’s having about ten a day so it doesn’t seem to be working. So once we’ve given the medicine twice and he’s on his fifth or sixth seizure of the day, we have to ring an ambulance to transport him safely into hospital. So far the only medicine that stops them properly has to be administered through a canula and there also happens to be a worldwide shortage of it - last time we were told that there were only five vials of it left in the hospital and they’d come from America and there was no chance of getting any more. (We were also told that if Scooby needed all five vials and a blue-light trip to hospital everyday so he could spend the nights at home, or free bed and board for as long as we wanted it, then we could have it all, cos that’s how great our NHS system is and I think the staff and the system are AMAZING – we are so blessed to live in this country.) So he has the medicine there and has about twenty-four hours relief from seizures, but by the time he has been monitored for a couple of nights there and he comes home, the cycle has started again.
I could have written more, about the stress and the unpredictability and the strain on family relationships and the chaotic mess that our house was turning into, but I stopped there because I knew I wasn’t going to post it up as it’s too negative and depressing and I hate being those things, and there was, for the first time in this journey, pretty much nothing positive to add. He was hanging on by a thread and so was our sanity.
But I can post it now because I want to show you the contrast. Two weeks ago, just after I wrote that, he changed anti-seizure medication for about the ninth time. He came home on weekend leave from the hospital and we carried on with the above, with slightly less seizures. He went back on Monday but he seemed more stable so they discharged him. We managed three, then four, then five nights in a row, and just as we were thinking he would have to go back in because the seizures had increased again, they suddenly changed in temperament back to how they used to be – short and sharp and over in less than two minutes. And then, after seven nights, they stopped altogether. And in the meantime he was beginning to do things we hadn’t seen him do in a long time. He was sitting up unaided, and able to hold a juice cup. Then he started to shuffle on his knees on the floor while he was playing with his brothers, and trying to hold a spoon at meal times. Then he was able to climb from the floor onto the couch, and feed himself (very messily!) and grasp a chunky pen enough to be able to write very wibbly-wobbly letters. And he seemed to sort of wake up again too. His loud, excited voice was back (as well as his piercing ‘I-need-something-right-now! voice) and his words stopped being drawn out and slurred. Two days ago he asked if he could read the original Winnie-the-Pooh book. I gave it to him, thinking he would balk at the volume of writing and the tiny print, but he launched into it and read the first two chapters out loud without stopping while I stared at him, open-mouthed. He’s been using the laptop to do his schoolwork (his choice, not mine!) and teaching his little brother and sister how to draw basic shapes on the Aquadraw mat on the floor.
So, it could be the new anti-seizure drug that has made this difference, or the chemo having positive effects, or the amount of faithful prayer he has received, but in the words of his brilliant consultant; “None of us are clever enough to know what’s caused this change, but none of us are stupid enough to try and find out, so we’ll all just keep doing exactly what we’re doing!” And although I am hopeful, I am also aware that with the many ups and downs we’ve had, this could be just another up period before another down one, but even so it is a very very VERY welcome relief from the hellishness that this autumn has been. So we will thank God, keep praying and enjoying being able to breathe again for a while.