Chapter 4 - Treatment

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Our morbid fear of transplants soon faded during Max's second cancer. During treatment you often find yourself on ground which you never expected to reach. These are places where the unthinkable becomes transformed into the desirable. What first appeared as straws in the sea become rafts of hope. Your perspective changes with the progress of the illness. When presented with death, any other option becomes a glowing light at the end of the tunnel.

During Max's second cancer he had experimental treatment which involved giving him very high dosage chemotherapy. It was hoped that this high dosage would destroy all the cancer cells. The drawback was the fact that it would almost completely destroy his immune system. In the past, the time taken for the immune system to reactivate after high dosage chemotherapy would leave the patient so exposed to minor secondary infections that this treatment would be lethal. The rationale behind the experimental treatment was that a new drug* was able to stimulate the growth of the stem cells in the marrow. This would help the immune system rapidly regenerate after the chemotherapy.

Although the new drug helped overcome the problems of infection after immuno-suppression, there was also the danger of possible organ damage caused by the extreme toxicity of the high intensity chemotherapy. I found this very frightening. When I asked how the consultants knew where to set the dosages with respect to organ damage, they said that they didn't yet have an accurate guideline because the procedure was so new. They had a rough idea of a dose which would not be fatal to most children, but there was not enough information to gauge how well a given child could tolerate these doses. This was the experimental side of the treatment. We were between a rock and a hard place. Potential death if you do, potential death if you don’t.

We had been told that the drugs would be given in higher concentrations compared to the normal dosage. I was not prepared for how much higher those concentrations would be. The first drug was twelve times stronger than the standard dose.

This caused problems. The drug was so concentrated that it started to crystallise in the lines used to pump drugs into Max’s bloodstream. Two of the three lines became blocked. If the third become blocked then an operation would be necessary to replace the line. The line was eventually cleared and no operation was required.

These were some of the occasions where we were asked to intervene with a decision regarding Max’s illness and which added to our understanding of his treatment.

Another dimension to treatment are the complications. When we first arrived at the Royal Marsden Hospital I thought that our battle was with cancer. Soon I realised that this was only half the story. Because of the nature of cancer treatment, complications can easily become as lethal as the disease itself. Again the paradox.

* GCSF

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