So, it’s official – surgery is booked in for next Friday. A week today it should all be over.
Last time I wrote I was feeling pretty scared about it because of the other boys I’ve seen on Facebook having complications after the spinal port was placed. The 30 page consent document mentioned all the potential risks, and I knew what we were signing up to. Reading about risks though doesn’t hit home nearly as much as seeing a picture of a boy in hospital fighting off a serious infection.
More than once I’ve wondered whether we are making the right decision but I’ve got a lot more used to the idea now. And the reason? It’s Facebook again.
Another mum in the UK who I’ve got to know on Facebook (and met at the panto!) has been sharing some of their experience with me. It’s so reassuring to hear about the care that is taken by the trial team, doing all they can to address potential problems even before they occur. And on a group set up for parents to discuss trial matters I’ve been reading about the progress that many of the boys have made with the delivery of enzyme to their brains; from increased vocabulary and understanding, to being able to zip up their own coat. I want that for Pudding. I want it so much.
He is learning still, even now. Yesterday when we were playing with some of his little figures, I said ‘This man wants a friend.’ Pudding immediately pointed at the box where all the others are kept, and said ‘There’. (Well actually a lot of gobbledy-gook followed by ‘Dere’!) How much more could he learn if we can stop his brain filling up with waste products?
I know it’s not guaranteed – it’s a trial after all and for some on the first phase, the treatment was not enough to halt progression of the brain disease. But it’s worth the risk.
Nothing ventured, nothing gained.