Memories of Max - A Father's Story

Chapter 3 - Waiting

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“As you know from before, the premise of treatment is to risk killing the patient, kill the disease, then rescue the patient. With Rhabdo we think that not all the cancer cells are destroyed during treatment and that the relapse is caused by those remaining cells. We want to try a treatment regime which involves much higher doses of chemotherapy. This is now possible because we have improved the methods of rescuing the patient. If we had given these high doses in the past then the immune system became so damaged that the patient died from minor infections due to the time it took for the body to recover from the chemotherapy. We now have drugs which allow the immune system to rapidly regenerate before the infections have time to take hold.”

Sara asked “How many children have had this treatment? How effective is it?”

“We've treated about half a dozen children so far, but we cannot judge the effectiveness yet. None of them have reached a six month checkpoint. This treatment is being tried in a number of hospitals and follows the rigorous testing which goes with all protocols.”

The dilemma of experimental treatment is faced by many parents. You are asked the impossible. Make a judgement on your child’s life. What experience do you have? You can ask as many questions during the consultation or later regarding the treatment, but what do you really know? A consultant once said to me that he would prefer that parents were taken out of the loop because it was not fair to ask them to make such a decision. I was horrified at the time but I can now see what he meant. Parents are put in an impossible position. It would never be morally right to try a new treatment on a child without seeking parental consent, but conversely parents are just not equipped to deal with these sorts of decisions. There is no easy solution.

At the end of the day this situation is resolved by trust. How much do you trust the judgement of the experts? They, too, are feeling their way through this precarious minefield.

Sara and I decided to try the new experimental treatment. We were very fortunate in all the decisions which we made with respect to Max's illness. Neither Sara nor I ever disagreed over the many decisions like this which we had to make. The potential for recrimination if a couple disagree about a decision and the child dies does not bear thinking about. Whether the death is caused by a faulty decision is irrelevant. If the child dies there will always in the back of your mind be the thought that if only your partner had gone along with what you wanted then it all would have been fine. It's never that simple, but is such an easy a trap to fall into.

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