Neil

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Neil was first diagnosed with acute lymphoblastic leukemia at age 3. After induction chemotherapy failed to produce a remission, his family spent the next 6 months traveling around the country trying to find the best doctors and latest chemotherapy options. When they finally decided to seek treatment for Neil at a major children’s hospital hundreds of miles from their rural home, Neil and his mother moved to this city, where he spent the next 3-1/2 years in and out of eventually successful chemotherapy and a bone marrow transplant.

Years later, Neil revealed that most of his early memories involved the staff or patients of the children’s hospital. He certainly remembered good experiences, like the ceremonial head-shaving parties, the local ballet company’s recitals in the hospital, and his close friendships with other patients. But the reality was that Neil had lost many of those friends during his hospital stay, and he had many painful memories, too—the endless nights of nausea and pain, his mother’s constant anxiety about his recovery, and the unexpectedly difficult transition back to “civilian living,” catching up in school and learning to share belongings and his parents’ time with his siblings.

Neil succeeded in putting those painful memories behind him and living the life of an average kid in a small town. He’d developed an enthusiasm for football in long conversations with a football-loving nurse, and he threw himself into playing. However, when he was 14 years old, he began to notice increasing fatigue during practice and games. He didn’t mention it to his mother. During his annual physical, it was noted that he had lost 15 pounds and, when questioned, he revealed his other symptoms. His mother, inconsolable, prepared for another trip to Children’s Hospital.

There, Andrea, a third-year medical student, was assigned to Neil’s case. She, too, shared Neil’s enthusiasm for football, and they developed a rapport. But when Neil began asking Andrea about his diagnosis, she didn’t know how to respond.

Neil’s ALL had, in fact, returned. Because he had relapsed after transplant, only participation in a Phase I trial designed to measure toxicity and maximum dosages of new chemotherapy agents was offered as an option. But his mother had specifically asked the treatment team not to discuss Neil’s diagnosis with him, believing that he couldn’t cope with the news or appreciate its implications.

Meanwhile, Neil confided in Andrea that he would rather die than endure another course of chemotherapy, saying, “It was horrible. I can’t do it again. I just want to go home, but I’m scared my mom and doctors will hate me.”

*http://virtualmentor.ama-assn.org/2010/07/ccas1-1007.html