Get the bearings

A day of contrasts. His future life and the end of his life.

Spent the morning at a speech and language therapy session. Trying to get strategies to help the boy's language development. To help him build his vocabulary. To help him move from single words to sentences. To help him communicate outside of us, auntie and granny.

Then we had a bit of free time to finally discuss properly where to go for the future for the boy. One of the most difficult discussions for the wife and I. More difficult even than last autumn's discussion on whether to put him through further surgery. That was about the level of risk we were prepared to take in order to get a cure. This time was about what level of risk we are prepared to put him through to extend his life.

In the end, after much soul searching we have decided not to pursue any further treatment. This is on the basis that off treatment we stand the best chance of allowing him to have a life, however short, with the best chance of remaining out of hospital. Until we get to the end. The alternative chemo treatment might have allowed us to hold the tumour for a while, even if there was no chance of a cure. But being on chemo is no soft option for him. Reduced immunity would have given us a high chance of him having secondary infections. These would almost certainly have meant long periods in hospital. His trachaeostomy and chest weakness make this a racing certainty. And our experience of March's infection show that this is not a good quality of life for him with a serious risk of ending up on a ventilator. Having managed to get through an infection without going to hospital last week shows the possibilites without chemo.

Glad we have finally made a decision. But not one I hoped we would ever have to make.