It’s usually difficult to write updates about Scooby’s condition because most of the time we are in limbo mode – as in, ‘he seems to be doing much better but it may be that his symptoms are being masked by steroids’, or ‘he’s much worse but he’s just started a new medication so he may be better in a few weeks.’
We are in another one of those times but I will attempt an update here (by the way, I’ve created a subject link along the bottom of this post so if you want to read the whole past history, click on ‘Scooby Syndrome’ and all the past posts will come up).
Since the end of March, Scooby’s been on a drug to suppress his immune system and there’s been some highs and lows but it doesn’t seem to have done the trick. He was gradually worsening (getting more tired and shaky) and so we knew things weren’t good, but then we had a scan in July that really surprised us – it showed that the dodgy material in the brain had faded, indicated it was all old activity, with nothing new. This really encouraged all of us and so the doctors wondered whether his shakiness was due to seizure activity – like a prolonged small scale seizure between the actual seizures, as a result of the damage already done to his brain. So they put him on a new anti-seizure drug but we had to wait for a while for results, because with all these kind of drugs, you have to start on a small dose and very gradually build up to the full dose over a period of weeks. Over the summer he got worse until his legs were shaking so badly he wasn’t able to walk at all. Occasionally he can make a few steps in a row but then his knees buckle and he’s on the floor. So we’ve been carrying him up and down stairs, and to and from the car, etc. We have a fantastic double in-line buggy designed to take his weight and carry Baby too, which was paid for by a local charity, so we’ve still been getting out and about over the summer, but with his lack of ability to move and his almost daily seizures it was clear things were not good. After being in and out of the local hospital in the last few weeks (one visit was with a prolonged absence seizure that lasted over half an hour which was pretty scary) we took him back to Manchester where they repeated the MRI scan. As expected, it was worse. Why the last one was better, we don’t know, but this one showed clear spreading of this disease or material that still doesn’t have a name.
So now we are going to move forward to the option that has been on the table since the beginning of this year, which is chemotherapy. This particular type will attack a few different areas of the body, so it stands more chance of working than anything else. Obviously, chemo is never pleasant, but this particular type and small quantity, carries much fewer side effects and long term consequences than chemo normally does. Having seen what this brain disease is doing to him it now seems much more of a risk worth taking than when it was first discussed.
He was due to start it this week, however the initial tests he had when he went in showed that his blood count was low, and as chemo lowers your blood count even more, he needs to have a healthy one to start with. They were going to give him a large intravenous dose of steroids to boost his bloods, but he keeps having high temperatures (a symptom we haven’t seen in a really long time!), so they think he must currently be fighting an infection, in which case they don’t want to give him more steroids which will knock out his immune system......
So the plan (as of a few hours ago) is that he comes home, has a couple more days to fight this cold, and goes back on Monday to see if the mega-steroid boost (not an accurate medical term) can be given then.
Bad news = the inevitable is prolonged, he’s not feeling well due to the various meds and his cold combined, and his mood swings are worse because of the side effects
Good news = he gets to spend his birthday at home tomorrow with his twin and the rest of us J