Saw the oncologist. After the usual discussion of the boy's current health, we got down to the real business. What options are left to us? To be honest, although she took her time going through them, I can't quite remember but they seem to be:
- curative options:
(a) further surgery: not on the cards. The surgeon is not prepared to do it because of the location and the high risk of blindness and paralysis.
(b) radiation: either Gamma Knife radiotherapy or re-radiation like before, which is being trialled in the US. We will have to wait for clarity on whether he is eligible for either. The gamma knife seems particularly worrying since the residual tumour is on the brain stem, so risks are high. Re-radiation doesn't seem too hot since it didn't do much last time.
(c) chemotherapy: Boston Protocol is being discussed. Don't know much about it and depends if we can find a way of getting thalidomide down his gastro tube.
- management options:
(a) continue with etoposide on the grounds that it did a bit previously and the risk of secondary tumours from what would be a toxic dose doesn't matter since he is unlikely to live long enough to be affected.
(b) put him in a study: to test doses and effects of new chemo. Not wildly attractive for him to be a guinea pig given his frailty. He isn't eligible for most and would most likely mean spending our remaining time in hospital.
Bottom line is that the location of the tumour rules out the option with greatest chance of success - surgery. And probably rules out the option with the next highest likelihood of success - gamma knife - for the same reason. This leaves us with re-radiation as a pretty poor third choice.
Have to face that the boy's chances of surviving - never high at the best of times - are now as low as they've ever been. Am always mindful of what the oncologist said eighteen months ago, that he might see his fourth birthday but wouldn't see his fifth birthday. But as the wife said, no point wasting time crying now, we will have plenty of time for that later.
Having had that cheerful news, we had to return to the boy to prepare him for his next procedure - general anaesthetic for a CT scan of his dodgy chest. He did not want to go down. He is starting to fear being messed around with by doctors. He cried all the way down and in the scanner room. As if the day wasn't stressful enough already.
On returning, I let him sleep for an hour and then woke him up. It was as if his personal sun had come out. He was bright, cheerful, playful and engaged. Was a pleasure to be with. Managed to get him to do a little walking, holding my hand. After a month in bed his little leg muscles are terribly wasted. We also played "fetch" in which he throws little plastic bricks and I fetch them. The wife insists that this is good exercise for him after spending so much time just lying down. Perhaps. But it's hard exercise for me too.
In the evening we had the usual tears about deflating and reflating the cuff on his trachy. And a worse than usual tape change. He had been fine with this for two years but over the last couple of weeks it has become a real battlefield. I have had to do the holding of the trachy while the tapes are changed as my wife is not strong enough to hold him down on the bed. With a slippery trachy no easy task.
We had just finished when the night nurse arrived. He went balistic, waving at her to go away and saying no, no to her and tellling her to go home. She had a bad journey in and was very offended by his behaviour, saying if he had been in an open ward she would have gone home. She is very good and we can't afford to lose her. The wife took the nurse outside to placate her whilst I tried to restore order with the boy. Wasn't easy but a mixture of bribes and threats restored an uneasy harmony. He even said sorry to the nurse, albeit with ill-grace.
An unhappy end to an unhappy day.
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