Are we here?

Looking back at the risks that we took in going for these operations, there were four possible outcomes:

- operations successful, minor damage
- operations unsuccessful, minor damage
- operations unsuccessful, major damage
- operations successful, major damage

Assume it must be the same for any parent considering neurosurgery for their child. The side effects will vary, as will personal definitions of "minor" and "major". For us, beyond the first, it was difficult to rank the other three. But probaly in the order above. We were worried about successful operations leaving him with a significantly reduced quality of life. That would have felt like putting him in a worse position than before.

At the moment, it would appear that we have avoided the worst possible outcome - for now. In no way did he get off scot free. He has right-sided facial weakness, his right eye can't blink and the vision is uncertain, he can't swallow and as a result cannot speak. But since the outcome of the operations is unclear we don't yet know which ultimate outcome he has achieved. And if the next scan shows that the operations were unsuccessful and he has to have more treatment, then we could still end up with any of the same set of scenarios.

The neurosurgeon is unlikely to do a fourth operation. It is not something they'd choose to do again as it seems that scarring in the brain from each operation makes successive ones more difficult to do. And the neurosurgeon is not clear what she'd be looking for next time, given she took out what she could see.

So, as a preliminary, we are going to have a paper referral to another hospital 200 miles away to look at the options for gamma knife surgery. This would minimise the delay in starting that treatment should we get a bad result from the MRI roulette. I don't know that much about it. But it is a specialised form of radiotherapy that focuses radiation on very small areas. It is quite a new technique. Not much used in the UK. And rarely used on children. And very rarely used on children as young as the boy. It seems to be more in use on children in the US. But that is jumping too far ahead for now.

For now the plan is to get him well. For him to recover over Christmas and the New Year and for him to be reviewed early in January by the oncologist (whom we have warmed to and she to the boy) with a view to starting a new round of chemo. We knew he would have to have chemo again. So his little crop hair will disappear again. And we will be back to having a hermit-like existence to reduce his infection risk. His immune system will take another pasting. It is a bad time of year to have chemo because of the number of coughs and colds around. But there's nothing we can do about it except keep him well enough to start the chemo.