Dark Days

It’s been a tough old week.

There’s been another slight change in Scooby, mainly in his hands and face. He’s had moments in the last six months of stammering and getting twitches in his cheeks but it seems to be much more frequent recently. Sometimes it’s like watching someone in a faulty video – you know, if the tape’s slightly chewed, and the screen flickers? That’s what I keep thinking as I watch him talk and his mouth or cheek seems to move the wrong way, like little spasms in the muscle. He’s completely undeterred by it, and will keep talking anyway, sometimes starting his speech again if he feels it’s not coming out right. Occasionally I’ll stop him and get him to rest if his cheek’s moving too much because it seizes up and he starts to panic.

His hands are the other place that the spasms start, especially as he’s doing something fiddly like getting his seatbelt on, or pushing his arm through a sleeve that’s got tangled. The other boys are good at helping him when he needs them to, which is good because it’s building teamwork and a sense of reliance on each other. He’s struggling to do most things that require a great deal of muscle control, like cutting with scissors, or fastening a button. Although he doesn’t normally sit still anymore (because of the medication, or to compensate for the involuntary movements, I don’t know) when he tries to be still, you can see his hands trembling slightly all the time.

I contacted his consultant on Monday to let him know he was getting worse, and within the next few hours Scooby had two more seizures. One was a small one on Monday night, which he has occasionally had since being on the anti-seizure drugs, but the other was a big one on Tuesday afternoon as we were getting in the car. He didn’t regain consciousness for about ten minutes afterwards (which feels like forever while you wonder whether to call an ambulance or not) but eventually he came round and then slept it off for a couple of hours.

Thankfully his consultant was with the neurologist at the time so when I rang they were able to advise me to increase his medication, and in the meantime they are trying to move the next procedure forward as it’s clear things are still deteriorating inside his head.

The news we received last week was that the biopsy has given them a different picture than the material found on the lungs. Rather than it being inflammatory or like an immune system dysfunction, it looks like the patches in the brain may be cells that have starved of oxygen and/or blood. It’s possible that this happened as a knock-on effect of an faulty immune reaction somewhere else in his body (which would connect the different findings) but what they need to do to confirm that is more investigation into the blood vessels going into the brain. His doctor compared it to the process that happens to the heart when people have angina.

What we are waiting for now is a way of conducting these investigations, as Manchester haven’t got all the equipment in place yet. He may need to go to another hospital to have it done, or they may be able to get the equipment into Manchester for him or, if everything is taking too long, they may just have to start him on a course of treatment to open up the blood vessels, which would hinder their investigations and the long-awaited diagnosis but may stop this awful degeneration from continuing.

So now we are waiting.

And that is why this week has been a tough one. Because it is now exactly a year since all this started. In retrospect, the process in his body must have already started months (or even years?) before then, but we were blissfully ignorant about it and had no idea what was about to happen. We went from a possible stigma in his eye, to suspected inflammation of the sinuses, to a presumed brain tumour in less than a week. This day last year we were in an ambulance in the dead of the night headed straight to a consultation with the top paediatric neurosurgeons in the country. Obviously, the next few days that followed changed everything again as they began to find more pictures of the puzzle, but there was always a voice in my mind saying ‘Well, at least it’s not a tumour, whatever it is,’ and that’s always helped me to keep things in perspective.

But there is a tiny bit of me (the voice behind the voice) that says ‘But at least they would know what to do with a brain tumour.’

I’m not belittling how traumatic a brain tumour is. I know that if it had been one, we might have lost him already by now, or he may have had the expected surgery and we might have spent the last year looking after a very ill or permanently brain damaged child. He might still have been fighting it now, and having seizures, and endless hospital trips, and uncertainty about the future. I am so grateful that we didn’t have to go through major brain surgery or chemotherapy.

But I never ever thought that a whole year on we would still be here still wondering if all those things were going to happen. Because they are still a future possibility. Thanks to the biopsy, they know it is not cancerous or a tumour, but they still don’t know whether he may need radiation or chemo or surgery or any other of the best and worst treatments out there. We still don’t know what this process is that seems to be marching on through his brain, and how it can be stopped and where it will end. We don’t know why he can’t seem to function without the steroids and why his body stopped working without them.  We are still watching, sitting, waiting and I really really wanted to NOT be doing that today. I wanted to be able to say ‘Wow, remember this time last year when we thought it was a tumour? What a relief!’

This is not a rant about the NHS. I LOVE the NHS. Without it, we would be thousands and thousands of pounds in debt (or in piles of paperwork between the insurance companies) because of the biopsies and multiple MRIs and other scans and tests, and we would constantly be doubting whether we were choosing the right doctors in the right hospitals or whether we needed to be spending more cash flying him somewhere else to someone who claimed to be the best. Instead, we have been given the best doctors without having to ask for them, and they in turn have spent hours and hours of their valuable time researching and communicating on our behalf with top specialists around the world. I know that things are moving slowly because we have the best and sometimes the best are required at conferences and to give their expertise to so many other cases. It’s also moving slowly because they don’t know what it is and so they need to be absolutely certain before giving any treatment that it is going to be beneficial and not ruin their investigations by covering up symptoms or making the process worse. I am so very grateful for this.

But I am tired. And frustrated. And sometimes scared. This is a post of those things, and soon I will write another post (I promise! J ) about the good things, and the blessings, and the way God has held and supported and cushioned us, and proved Himself faithful to us over and over and over again. This has been a much bigger reality in the last year than days like today when I feel stretched and down and unsure. I’m writing this to be honest about the worst parts of this journey we’re in, because it’s important to face them. There are days where God does have to bring me face to face with what we may be facing and say ‘This is real,’ because if I don’t have days when I shake with fear (like last Monday after his fall downstairs) or cry over making the simplest decisions because I don’t know what the next few weeks will bring (on Wednesday in the car on the way home from preschool), then sometimes I think I am exercising faith when it is really denial, or experiencing peace when it is really numbness.

Thankyou God that we are allowed to surrender to bad days to help us keep the rest of life in perspective!

(But whenever You decide it’s time to get past this bit of our lives and move on - I’m ready. Just sayin'.)