So much wanted to hear that December's scan anomoly was scarring not tumour. Ependymoma's may have a high recurrance rate but I wanted a bit of time without the long shadow of the tumour over us. Time to be a family. Time to enjoy him. Time to be a parent rather than a carer. A day to look at him without thinking he's going to die. But it's not to be.
Three long courses of chemo. Three major brain operations. Thirty doses of radiation. Fourteen months in hospital. All seemingly for nothing.
No idea what the options we will be offered will be next week but they probably amount to this:
- options for cure: (a) more surgery with the high risk of further significant effects on his quality of life; or (b) gamma knife radiotherapy 200 miles away.
- options for managing his decline: (a) more of the chemo he's currently on with a risk of secondary tumours; (b) experimental chemo to assess it's effectiveness with little idea of side effects or effectiveness; or (c) do nothing.
Given where the tumour is and that he's already had a heavy dose of radiation, there's no guarantee that he will be offered any options for cure. We may well have to face the unpalatable choice of the options for managing his decline and wondering how long he's got. Don't know how we can help him or us through the end game. Too hard to think about now.
And now a day in hospital alone with the boy.