Thursday, 12 July 2007

Can't get you out of my head

Bad. Very bad. Worse than bad.

Saw the consultant today about the boy's brain scan. You always try to anticipate the news by judging body language when they call you in. But you never can.

She said that not only has the tumour regrown from the original site but that there is a new spot in the brain stem.

She offered to get a surgical second opinion or a chemo second opinion. But the chances of anyone being prepared to operate in that part of the brain stem is low and the risks would be so high that we wouldn't take it up. Secondary chemo is experimental and our own research has shown that there is nothing out there that looks as if it will help. So we've decided against that on the grounds that the likely benefit is low and the chances of illness are high. Don't want to spend the time left in hospital.

Where does that leave us? I guess, struggling to accept the enormity that he's going to die. And there's nothing we can do about it. Timescales? Always hard to know but given the growth since the end of March, not long. Maybe a matter of weeks or months. Probably by the end of the year. He is unlikely to make his fourth birthday in December. And it's a concept he's only just starting to understand.

The location of the new tumour means that he is likely to have mobility and breathing problems at some point in the summer, which may hasten the end.

The wife broadly held it together in the meeting but had a wretching sob afterwards. She did pull it together - "we will have time enough to cry when he's dead" has to be our mantra. Let's hope we can manage it. I just felt numb but functional and had to return to work.

Coming home was like a dream. The boy was the same as I left him, though I was studying him intently for signs of change. He was playing hide and seek and getting cross about having to stop watching TV and have a bath. But gave me lovely cuddle before Mummy read him a story.

1 comment:

Thomas, as told to Sarah said...

So wish there was more comfort to offer. Cannot believe you had to go back to work.