Charlie Smith tells a story about her son, Trevor Schaefer, who was diagnosed with brain cancer in 2002 while the pair lived in idyllic McCall, Idaho.
He was just 13 years old, in the midst of 14 months of chemotherapy, bald, thin, with sunken eyes, when he sat at the breakfast table thinking of other children from his hometown who had also been diagnosed with cancer. Smith remembers, “He looked up at me and said, ‘Mom, I’m so angry that this happened to me but it happened for a reason. We need to find out why this is happening to so many kids. I want to get some answers.’”
Boxer’s In His Corner
Now a cancer-free 21-year-old business major at Boise State University, Schaefer has been looking for answers, and finding some, for the last eight years. His biggest success came at the end of September, when Senator Barbara Boxer (D-CA), the Chairman of the Senate’s Committee on Environment & Public Works, introduced “Trevor’s Law,” federal legislation three years in the making aimed at improving the investigation of disease clusters. “It’s about preventing future clusters by finding the causes,” Schaefer explains.
“Disease clusters” are geographical pockets with higher-than-average incidences of disease, such as the unofficial cluster of childhood cancers in McCall. Schaefer’s Senator, Mike Crapo (R-ID), joined the bill as a co-sponsor, spurring hopes that the Senate will pass the bipartisan effort sometime next year, despite the recent gridlock.
Upon the bill’s introduction, Boxer said, “Whenever there is an unusual increase in disease within a community, those families deserve to know that the federal government’s top scientists and experts are accessible and available to help, especially when the health and safety of children are at risk.”
Schaefer believes that his cancer was caused from swimming in Payette Lake, where mining chemicals may have leaked over decades. Smith says that university researchers she hired to test the water found high levels of dangerous chemicals like cobalt, mercury and phosphorus. But placing the blame for a cancer diagnosis on environmental factors is difficult, so Payette Lake is still promoted as a tourist destination, and so far hasn’t been designated as a dangerous place.
There’s no denying that disease clusters are real, though. Just look at the harmful groundwater contamination documented in the film Erin Brockovich that earned residents of Hinkley, Calif., a record-breaking $333 million settlement from a gas and electric company.
Officially called the Strengthening Protections For Children and Communities From Disease Clusters Act, Boxer’s bill would strengthen federal agency coordination and accountability when investigating disease clusters; increase assistance to areas impacted by clusters; and authorize federal agencies to partner with states and academic institutions to investigate clusters. There is also hope that affected citizens will have an easier time getting a seat at the table than Schaefer and Smith did.
Advocates With Experience
After Trevor’s diagnosis, calls from other mothers about their children’s diagnoses snapped Smith off of autopilot. She started making calls and knocking on doors — to the governor’s office, the EPA, the Idaho Department of Environmental Quality. At first, she wasn’t getting anywhere. Still, she says, attending the funerals of children kept her motivated to curb childhood cancer, which afflicts more than 10,000 children each year and kills more than 1,500, according to the National Cancer Institute.
It’s the leading cause of death by disease among kids aged 1 to 14, and the number of kids diagnosed is on the rise.
Coupled with Smith’s persistence, Schaefer’s firsthand experience has made him an incredibly effective advocate and gotten him meetings with not only Boxer, but also Idaho Governor Butch Otter, EPA Administrator Lisa Jackson and other decision makers. In his measured but modest way, he tells them, “Children’s immune systems are not developed, so they’re more susceptible to their surroundings.” Smith echoes, “They’re like the canaries in the coal mine.”
In 2007, Schaefer, Smith and author Susan Rosser, who collaborated with Schaefer on a book about his life, founded the Trevor’s Trek Foundation to raise awareness of environmental contamination and disease clusters. He is the Youth Ambassador for the National Disease Cluster Alliance and volunteers with the Make-A-Wish Foundation of Idaho. Most recently Schaefer worked with Boise Mayor Dave Bieter on plans for a childhood cancer pavilion in a local park, in an attempt to recognize that even those who survive are never the same.
Photos courtesy Charlie Smith and Trevor Schaefer.
