History - 2006

The boy was just two years old. He'd had surgery on the tumour; had a trachy and G tube insterted; had chemo (unsuccessful); and had radiotherapy.

He had a MRI at two years, one month old. The radiotherapy had some limited effect. But the tumour was still there. Not being on treatment meant his hair grew back. A shade lighter than before but still lots of it. It was a good time to be off work. We would all recover a bit and enjoy being together.

Not being prepared to accept that there was no more treatment for him, the wife asked for a second opinion when the boy was two and a quarter years old. She had to travel 200 miles to see the consultant. I had to stay with the boy, as he has to be left with someone trachy trained. The consultant suggested another chemo.

At age two and a half, he started the next chemo for three months. He was ill again on it and spent two months in hospital. And so, so did we. But at age two and three-quarters, the next MRI showed that it had done a little good. The tumour had shrunk very slightly. But just enough for the surgeon to say she was prepared to try again. But it would mean two operations, two months apart. The first operation was the "easy one", the second the "difficult one" - read much more risky to do and for the side-effects which might result.

At age two years, ten months he had the first operation. Four hours. Went well and part of the tumour was removed. He came through it well and was home after a week. A bit wobbly on his feet but otherwise fine.

Then they decided that since he'd recovered so well we should bring forward by a month the second operation. So, at two years eleven months he had the second operation. Six hours. Went well but outcome unclear. He did not come through it so well. Coming so soon after the first one he was not as strong going in. His recovery was slower. And he had complications. The right side of his face is paralysed. That element of his swallow that had recovered after the initial surgery was wiped out. But he was home just before the year end.