A protocol is a written plan for treating a disease. Just like a recipe for baking a cake, it has a list of ingredients, the amounts to use, and the order to use them so the recipe has the best chance for success. The protocol document lists the drugs, dosages, and tests for each segment of treatment and follow-up. It usually also contains a diagram (called a roadmap) that shows when each drug and test is given. If your child is enrolled in a clinical trial, the protocol will outline the treatment for each arm.
The clinical trial that my child was enrolled in had three arms—A, B, and C. He was in the A portion, so we only referred to the A section of the protocol, which clearly outlined each procedure and drug to be given for the duration of the trial. It also listed the follow-up care required by that particular clinical trial.
If the family chooses not to enroll in a clinical trial, they will be given a protocol for standard treatment (often the standard arm of the clinical trial).
The portion of the protocol devoted to the schedule may be five to twenty-five pages long. The family may also be given an abbreviated version (one to two pages) to provide quick and easy reference on a daily basis. This part of the protocol is frequently called the "roadmap." Parents and teenage patients should review these documents carefully with the oncologist so that all portions are understood. It will be the parents responsibility to make the appropriate appointments and give oral medications at the correct times.
Many parents express anguish when their child's protocol changes during treatment. An important point to remember is that the protocol is a guideline that is frequently modified, depending on each child's response to treatment.
I didn't know what a protocol was when Preston was diagnosed, and I understood from the doctors that this was the "exact" regime which must be followed to cure Preston. It frightened me whenever changes were made in the protocol. After several years, I came to view the protocol as merely a guideline that is individualized for each patient according to his tolerance and reaction to the drugs. We ended up deleting whole sections of Preston's protocol due to extreme side effects. He has been off therapy for five years now with no relapse.
It took me a long time to get over my hang-up that things needed to go exactly as per protocol. Any deviations on dose or days was a major stress for me. It took talking to many parents, as well as doctors and nurses, to realize and feel comfortable with the fact that no one ever goes along perfectly and that the protocol is meant as the broad guideline. There will always be times when your child will be off drugs or on half dose because of illness or low counts or whatever It took a long time to realize that this is not going to ruin the effectiveness, that the child gets what she can handle without causing undue harm.
I sobbed every night for an entire week when Christine was first taken off chemotherapy for low counts. I was convinced that the immunosuppression was due to a relapse. That was two years ago, and we have changed her dosages almost every two weeks due to erratic counts. I wish I had known how normal it is to go off protocol.
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