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Showing posts from 2015

Radioactive plaque

It crossed my mind some time ago to write a blog post called ‘Ten good things about having a child with eye cancer.’ Ten silver linings of an undeniably dark cloud. I’m not actually sure I could get to ten, but one of the things that would be up there is how much of Asa’s childhood we've had the opportunity to see (more than most parents, whose children can be safely packed away to a childminder or nursery while parents get on with making a living). Another would be the awareness that the fight against the disease has given us of the gifts of life and sight, which many people can take for granted.
The downsides are all too clear, of course. The misery of having poisons infused into your child’s bloodstream; the fear we felt, during chemo, of some infection snatching Asa’s life away; the repeated exams under general anaesthetic (more than 45 so far, since diagnosis); the sore, red eyes after exams, and the rigmarole of coaxing him to let us put stinging drops in them to control th…

Now we are four

The world is overdue an update on Asa.

Since last we wrote, he's begun capoeira classes, learned to ride a bicycle, and had five doses of chemotherapy drugs injected into his right eye.  He understands now that other children don't have to go through all of these things; not everyone has poorly eyes. But remarkably, he protests very little. He's easy-going, and he doesn't bear grudges (at least so far).
New hope
As a treatment for Rb, the most recent procedure -- intra-vitreal injections of melphalan -- is relatively new. Pioneered by the Japanese, and refined in the US and Switzerland, it's been tried on only about a dozen children in the UK so far.

Since the last dose was given in November, he's had three exams under anaesthetic. The results have been as close to 'all clear' as we've had in the past three years. At each exam, the doctors have seen some new tumour activity in the right eye, but it's been discrete and in a place that's accessi…