Don't Focus on Statistics

March 12, 1982 was the worst day of my life. Our son was 19 months old and he was diagnosed with acute lymphoblastic leukemia (ALL); our family's lives changed forever. In a space of 24 hours we were told our baby might die, and that if he lived, he probably would be sterile—two predictions of unequal weight but of horrifying impact. I have a Ph.D. in Educational Psychology/Child Development and my husband has four older children from a previous marriage, so we had thought we had some idea about child rearing. But with this terrifying diagnosis, neither of us had any idea how the future would unfold for our beautiful, bright, verbal, jolly little boy. In hindsight, we know we were lucky, but 34 years ago we were devastated.

It all started on a Friday morning when I took him to the doctor to check on his unusual pallor and fatigue. Based on stat blood tests, which showed his hemoglobin at 3.4, our pediatrician sent us directly to the closest tertiary care university teaching hospital. We were admitted and he was treated with packed red cells, which improved his energy and color immediately. He felt great: "Shoes on, shoes on. … Go home!" was his mantra, which I will never forget. They did not send us home, but the next day the chief pediatric hematologist/oncologist met with us, and tried to answer our anxious questions. He told us not to pay attention to statistics, but when we pestered him, he reported that based on age and presenting symptoms the "odds of survival" showed our son's case in the 50–50 category. We were even more upset, and we agreed to try not to focus on statistics.

While ALL has become one of the more treatable cancers, in the early '80's there were still lots of unanswered questions, and several experimental protocols were under study. We were basically in a state of shock as the doctors explained everything that lay ahead. We knew that information from others who preceded us in this nightmare had already contributed significantly, so we agreed to participate in the current research study. Our son was randomly assigned to a treatment protocol that involved the most intense sequence of drugs: cranial radiation followed by two or three years of monthly IV vincristine and cyclophosphamide on consecutive days, in addition to the standard L–Asparaginase, 6–mercaptopurine, prednisone, and intrathecal methotrexate. We understood that the "experimental" aspect of the protocol was the cyclophosphamide. The most urgent decision related to this regimen was whether to insert a Broviac catheter in order to facilitate the administration of the vincristine and cyclophosphamide. For reasons that escape memory at this point, the decision was made not to do the Broviac. I confess that I was relieved not to have the additional responsibility of cleaning it and maintaining a sterile environment on a busy two year–old boy, but he did get a few vincristine burns over the years.

The medical team at the hospital and clinic was an outstanding group of highly trained professionals, including a wonderful nurse practitioner and a psychologist, in addition to the renowned physicians and residents in training. They were patient with us and tried to answer our endless questions, even as they kept emphasizing the importance of "informed consent." Both my husband and I address problems and challenges through education and research, and we immersed ourselves in textbooks that defined all the different types of blood cells and blood diseases and cancers. If the medical team wanted us to be informed but not to focus on statistical outcomes, we thought the least we could do would be to try to understand the biology and chemistry of acute lymphoblastic leukemia.

Within a matter of just a few weeks, the doctors told us the disease was in remission, and we all heaved a big sigh of relief. We began to consider how to lead our lives with this "new normal" as something that would be with us forever. The medical team told us there was a strong probability that our son would develop a learning...