Trevor Schaefer seeks awareness and action to fight childhood “cancer clusters.”

Published on December 22, 2012 by Faith Brynie, Ph.D. in Brain Sense

In November of 2002, just after his thirteenth birthday, Trevor Schaefer was diagnosed with braincancer. Life was complicated at the time. His parents were going through a nasty divorce, and his crippling headaches had been misdiagnosed as everything from sinus infections to stomach flu.

Still, life was more good than bad for Trevor. He had great friends in his small Idaho community, straight As in school, and a mother who would do anything for him. She couldn’t cure his cancer, however. It took surgery, radiation, and chemotherapy to do that. Trevor’s path to health—along with the healing that his family needed—is beautifully chronicled in a new book by Susan Rosser (with Trevor and his mother, Charlie Smith). The Boy on the Lake: He Faced Down the Biggest Bully of His Life and Inspired Trevor’s Law is written like a novel, so that readers can “live” Trevor’s experiences with him.

Trevor’s story is a riveting tale of personal courage and survival, but its importance does not end there. Trevor and Charlie noticed a disproportionately large number of childhood cancers in their community. They reasoned that some environmental factor must be responsible. They investigated abandoned mines, mills, and factories near their home and discovered that numerous toxins were polluting their town’s air and water.Going public with what he and his mom had learned, Trevor became an advocate for children’s cancer and the inspiration for a new law that would, if enacted, help us better address the horror of environmentally induced “cluster cancers.” (United States Senate Bill S. 76, a.k.a. “Trevor’s Law”). Supporters of the law say that mathematically improbable clusters of various illnesses afflict children in many small towns, where citizens face an up-hill battle in gaining any attention—much less action—from government agencies whose mission is to monitor and improve environmental quality. Writes reviewer Alice Shabecoff, “The Boy on the Lake is an easy-to-read reference on how America’s small towns, and the children who live in them, are slipping through the cracks of environmental overreach and falling victim to a broken system…”

I was so impressed with the book that I invited Trevor (now age twenty-one and a college graduate) to write a guest post for this column. Here’s what he sent me:

Childhood Cancer: The Bully You Can’t Escape

by Trevor Schaefer

A bully is defined as someone that uses strength or power to intimidate those who are weaker. The thing about cancer, especially childhood cancer, is that it does not matter how strong or weak the child is or whether the child is from a rich family or poor family, the most popular kid in school or the class clown; cancer has the strength to intimidate anyone in its path.

When a child is diagnosed with cancer, everything changes. Cancer dictates how the child will live or die in the short term and plays a major role in the child’s quality of life in the long term. Despite advancements in treatment and the overall decline in the mortality rate for children with cancer, the threat of relapse and the lasting effects of treatment are constant reminders of the malingering bully.

In November of 2002, just one month into my fourteenth year, I was diagnosed with medulloblastoma, a highly malignant form of brain cancer. While my family life wasn’t perfect at the time of my diagnosis, I still led a pretty charmed life. I lived on the shore of Payette Lake, a beautiful glacial-body of water in the small, mountain town of McCall, Idaho. I was an avid wakeboarder and snowboarder, and I had just started playing football for my school team. Life seemed pretty close to perfect.

The bullying began with headaches. They weren’t too bad at first, but they soon became nauseating and incapacitating. That’s how bullies start, attacking you physically. Wearing you down and altering your daily life. A trip to the doctor to find out why you’re feeling so run down. The results from various medical tests revealing the worst fear: malignant brain cancer. What can be more terrifying to a newly minted teenager? My only thought was, “Am I going to die?”

You see, the thing with cancer is that it’s not just a physical bully. Cancer attacks the mental well-being of not only the host, but also the family of the host. And with the incidence of childhood cancer increasing by over 20% from 1975-2007, the issues resulting from a diagnosis of cancer are becoming more common. Mothers are typically hard-wired to protect their children. When cancer strikes a child, parents can be devastated. Families break apart from the stress that cancer brings with it. Resentment or jealousy is common. The cancer-child’s need for constant observation can be taken by siblings as an unfair grab for attention. No one can escape the force of cancer.

What’s worse, is that the bully doesn’t go away with the pronouncement of being cancer-free. In fact, the very treatment that helps to fight cancer leaves lasting scars, from memory loss and ringing in the ears to infertility.

Yes, cancer is a bully that never leaves the host alone. All that can be done is to find a way to live with it, to cope with the fact that every day is filled with challenges. The best way to combat a bully like cancer is to communicate. Sharing with others, whether similarly situated or with someone who is just a good listener, is the best way to maintain a positive outlook and to keep the bully at bay.