Chapter 4 - Treatment

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I was not sure how to phrase the next question. It seemed presumptuous.

“Are you telling me that there is the possibility that he might get through this cancer.”

“These are early days yet but things are certainly looking as if that he may respond enough that this tumour can be brought under control.”

This was beyond my wildest dreams. You start to fantasise into the impossible. At the very least you start to look towards the positive.

“Are you saying that we could be looking towards cure? Given that you think it is unlikely that the leukaemia will reoccur because of the time that he has been free of the disease, are we just looking at beating the Rhabdo? I guess what I am saying is that if he survives this treatment, and does not relapse then is there a chance of cure?”

The consultant momentarily looked horrified. His next sentence explained why but it took me eighteen months before I really understood what he was saying.

“You must understand that it is extremely rare for a child to get two unrelated cancers. In Max’s case the evidence suggests that there is a fundamental problem within his genes. Max’s case suggests that he falls into a group of what we call ‘Cancer Prone’ children. Even if he survives this cancer there is a strong possibility that he will get another unrelated cancer.”

This was the first time that I thought we had heard this. In reality I have since discovered that we were told many weeks earlier but at the time we were told we were too numb to comprehend or retain the information. You hear what you want or are capable of hearing. I thought the consultant was being unnaturally pessimistic and trying to protect us from false hopes. This was my denial of the situation. This fact was too much to truly absorb given that we had so much in front of us. I fully understood later exactly what he was trying to tell us having read some thirty books on genetics.

There is a very real problem when consultants talk to parents. Not only do they have to judge at what level to pitch the discussion, they also have to judge if you are capable of taking in the information which they are about to impart. I used to take a notebook into the discussions and write down what I thought I had heard. Simple, well not quite. There were a couple of times where Sara and I attended these discussions and came out with diametrically opposite impressions of what had been said. This is the problem of interpretation. You hear what you want to hear. We would agree on a statement, but had interpreted it in different ways. For this reason, there is always a nurse present so that you can ask questions afterwards.

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