Gosh, I wish I could get on here to talk about more fun things – like what we are doing at school and trips out and other adventures, but I can’t seem to find the time between doing it all, and it seems more important to update on Scooby’s progress, so I’ll do that again for now and hopefully somewhere along the line I’ll find time for the rest!
The chemo went ahead last week. We’d got to the point where we feared it may not happen at all – he was so poorly that they kept having to put it off but eventually they’ve got him stable enough for his body to cope with it and he’s had the first dose. It’s only the first of six monthly doses so it will be a long time before we know whether it is effective or not, but it’s good to know we’ve got the first one under our belt. It’s a very mild dose of the drug so the side-effects will hopefully be very minimal (we haven’t seen any yet) and although there are some long-term possible health risks, compared to what we are seeing this brain disease do, it’s a chance worth taking.
We have also seen an improvement in his movement and shakiness. ‘Improvement’ is a relative term as he is much worse than he was two months ago, but better than he was two weeks ago. I don’t realise until I begin to tell people, ‘He raised his left arm to wave at the doctor this morning!’ or ‘He’s been able to grip a paintbrush while Richard guides his hand!’ and realise they are not excited like I am, but rather shocked, that I probably haven’t been conveying how bad the situation has been! Two weeks ago he could only lie in his bed and wrap his arms tightly around himself to try and stop his body from constantly spasming. He was on three types of anti-seizure drugs but the only relief from shaking was when he was asleep. He couldn’t stand up at all and only moved from his bed when we carried him to the toilet, after which he would usually have a seizure due to the activity. He could eat if we put the food in his mouth but would get too tired to finish a full meal and would only have short conversations before wanting to go back to sleep or tuning into the television so he could focus his attention on trying to stop the shaking. Since the beginning of August he hasn’t been able to walk up stairs and only managed a few steps at a time inside the house, but he got to the point where he couldn’t even bear any weight at all. Even being sat up on a chair for a couple of seconds without being held or strapped in wasn’t possible – a mixture of seizure activity and the dizziness caused by the drugs would send him pitching forward.
A few days ago though, they tried him on a new, stronger anti-seizure medication. I haven’t been with him for over a week as I started with a cold so I couldn’t swap with Richard due to risk of infection (he’s full of immune-suppressants so can’t fight any viruses), but Richard has reported that he’s been sat up a lot more and shaking a lot less. He’s had a few days in a row without seizures and has begun to bear weight on his legs very briefly again. The drug has made him drowsy but that side-effect should wear off as his system gets used to it. So, if he continues to become more stable, he could be home in a couple of weeks. Tomorrow an occupational therapy team will come to our house to see what adaptations can be made for him. The doctors don’t want us to go back to carrying him up and down the stairs everyday and so they want to make sure we have these things in place before he comes home. With a four-storey town house with several split levels, I have no idea how they are going to manage this, but we will do whatever it takes to get the boy safely home. I don’t know how it will all work when he gets here – I am afraid of another experience like the one in the last post – but so far for every blow there has been a cushion (see this post) and I know this is how it will continue.
There’s been so much prayer for us all and some days I can palpably feel it holding me together. I would love it if we could also pray and thank God for two amazing people who are going way above and beyond their duty at the moment to get us the best care and fastest tests and results possible, and that is Dr Stephen Hughes and Dr Grace Vercello. Dr Hughes has been with us from the beginning and is the best communicator and passionate advocate of our case that we have seen (Richard has tried to kidnap him to bring him home with us a few times but apparently he has ‘other patients’ and an actual wife at home so we are obliged to go to where he is instead), and Dr Vercello came on the case a few weeks ago and has moved things along at an amazing rate. She is fiery and compassionate all at the same time and comes to see Scooby at the beginning and end of every shift she works, as well as the official visits with her team inbetween. As well as praying for wisdom for this case, it would be great if they could experience some of God’s blessing and closeness in their lives as a result of all this. There’s so much prayer going into our situation, I’d love it if some of it was heading their way as a result of people knowing their names!