Memories of Max - A Father's Story

Chapter 14 - Cancer Echoes

"We have taken on board everything you told us and understand your recommendations as to why the test should not be taken. We are in a precarious position with Max and are very aware of the slim chances of his survival. We both would like to do as much as possible towards helping other children with cancer. Given the rare occurrence of Max's condition, we feel very strongly that any information which might help other families in a similar condition should be investigated. Although the information could be damaging to us, surely it might help you to understand the mechanisms which lead to multiple cancers? If this is the case then we ask that you perform the test but that we are not informed of the result. On that basis we will never have the information which could cause any damage to us as a family and we would never be obliged to declare this to the insurance companies because we will never know the information."

She looked at us curiously. "Yes, that may well be possible. Whether it is possible or not, thank you for thinking of the other children."

"There is so little that we can do. We feel an awful helplessness. Here is something that could make a little difference. It would mean a lot to us. Will you do it?"

"I'm afraid the decision is not up to me. We have an Ethics Committee which will have to consider your request. I'll let you know the result of their discussion regarding the test."

The test was performed and we were not told the result. We were told that although it was our current wish that we should not be told the outcome, the door was always open and the result could be obtained if we ever changed our minds. That seemed to be that. But not quite.

There were repercussions which I had never envisaged. After the test had been taken, there were comments made by consultants which convinced me that the test had been positive. I was convinced that we were living with a hidden demon. Who was affected?. We did not know.

After Max died we lived with the prospect of Max's cancer being a genetic disease. Let me be more specific. All cancers are genetic diseases because they are caused by a defect within the genes. We faced the prospect that this spectre was hereditary and could still reach out from the grave and claim one of us.

Let me explain how and why cancer is a genetic disease. The damage to the genes can arise from three basic sources.

It can be caused by an external influence on the genes of a growing child. In this case the child was born healthy but some environmental factor caused a gene to mutate so that it behaves abnormally and hence causes cancer.

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