Thursday, 25 March 2010
I worry a lot these days. I worry about Adam of course. I worry about Jake & Jess and how all this is going to affect them in the coming months and years. I worry about Alison. Adam loves his Dad of course, but Mum is number one when it comes to caring for him when he's poorly. Alison bears a heavy burden in that regard. And sometimes I even worry about myself, but not all that often to be honest.
I can't speak for other parents of seriously ill children but from my own perspective Adam's illness has robbed me of the ability to relax. I mean to just totally and utterly switch-off. Some years ago I began to suffer from tinnitus, a constant high-pitched whistling in my ear. It's not something that affects me all the time, I tune into it when I'm not concentrated or focussed on anything else. Now there is an undercurrent of Adam's cancer that comes to me in the same way. If I have nothing else to think about my mind will take me to it. How, why, when, how long? The treatment, the future, the decisions, the possibilities. And of course the worries.
One of the things I worry about is America and how it is going to affect our family. We've always been a close family. Jake and Jessica like to squabble, but Adam floats between the two. He'll be playing Xbox with Jake one minute and engaged in some serious espionage business or comparing club penguin cards or gogos with Jessica the next. It was noticeable that when Adam was in hospital for prolonged periods at the start of his illness Jake and Jessica spent much more time in each other's company, forming a subconscious bond in the face of all that was happening around them.
The antibody treatment which is currently standard of care in America simply isn't available in the UK. The antibody itself (ch 14.18) is over here, but it's not being offered with the same drug combination that is believed to be vital to its efficacy in the States. So it falls to parents like us to decide whether we want to try to get to America where we know what the published risks and results are. Or whether we want to stay and take our chance with something which may or may not be of any benefit to our children.
Clearly we have come to the conclusion that America holds the best hope for Adam or we wouldn't be campaigning as we are to raise funds for him to have treatment there. Around the same time we hope Adam will be going out Jake will be starting secondary school and Jess Year 4. Most likely Alison will take Adam to America and the rest of us will stay in the UK and go out to visit whenever possible. The treatment lasts for 5 months so it's a long time to be apart for a family that has no real experience of not being together as a unit. I have bad days when I don't want to be away from Adam, and on such occasions I tend to work from home. Come September we could be thousands of miles apart, on different sides of the Atlantic.
Up until now we've been fortunate to live so close to one of the best paediatric cancer units in the country. Through all of Adam's treatments we have been able to come and go quite freely, his brother and sister have been able to visit regularly, and we've been able to maintain some semblance of a stable home life. At some point soon that's all going to change, and I worry what will happen when it does.