The evolution from patient to environmental activist came naturally

BY ROCKY BARKER – rbarker@idahostatesman.com
Copyright: © 2010 Idaho Statesman

Shawn Raecke/Idaho Statesman

Trevor Schaefer, 20, from Boise had brain cancer earlier in his life. The cancer has been gone now for over five years but the illness set the wheels in motion for Trevor and his mother Charlie Smith to become strong advocates for looking for answers about the causes of childhood cancer. “We want to help cancer survivors and we want to help prevent new cancers,” Schaefer said.

Trevor Schaefer woke up at age 13 in November 2002 with a terrible headache that McCall doctors said was a sinus infection. His mother, Charlie Smith, wasn’t satisfied and urged them to give him a CAT scan.

When he woke up after the scan he could see the truth on his mother’s face.

“It’s not a sinus infection, is it, Mom?” he asked.

Schaefer had brain cancer and doctors urged immediate surgery. After surgery, radiation and chemotherapy, Schaefer healed. He then began a volunteer campaign to fight childhood cancer and to support cancer survivors like himself.

He was recognized by the Statesman in 2007 as the Treasure Valley’s most courageous person. Now at 20, he’s a Boise State University student and he’s moving his campaign to a national stage.

“We want to help cancer survivors and we want to help prevent new cancers,” Schaefer said.

He and his mother are working with California Sen. Barbara Boxer to upgrade cancer registries so scientists can use them more effectively to spot childhood cancer clusters. And they have used their own connections to help researchers learn more about the links between toxins and childhood cancer.

“Trevor and Charlie have helped us with our research and helped get us in with (Environmental Protection Agency Administrator) Lisa Jackson,” said Mark Witten, a researcher with the University of Arizona, who has linked leukemia cancer clusters to toxins in Nevada and Arizona.

Cancer clusters are occurrences of cancer found in a small area or a short period of time at rates higher than statistically normal. But linking a cluster of cancers to a particular toxin or event is very hard scientifically.

One in two men and one in three women in the United States will be diagnosed with cancer sometime in their life, according to the Cancer Data Registry of Idaho. Cancer is the second leading cause of death in both the United States and Idaho, accounting for about 22 percent of deaths in the state in 2005.

Smith asked the registry to study a cluster of brain cancers in McCall at the same time as Trevor’s case. In 1998-2002, there were 457 cases of brain cancer diagnosed among Idaho residents, including six in Valley County, ranking it third-highest in the state. But the cluster was not considered statistically significant.

Registry officials said other cancers that metastasized into the brain made it appear there was more brain cancer than there was, said Chris Johnson, epidemiologist with the Cancer Data Registry of Idaho.

Smith said measuring at the county level isn’t enough. She wants records kept uniformly nationwide down to the zip code level.

Witten and his associate Paul Sheppard, also of the University of Arizona, have been tracking down cancer clusters and possible causes by measuring toxic substances in tree rings. This gives them definitive time frames for when a population was exposed to toxins.

In Fallon, Nev., they found high levels of tungsten associated with a cluster of childhood leukemia cases. Animal studies suggest that respiratory virus outbreaks may trigger the cancer in children sensitized by high tungsten exposure, Witten said.

They have done tests in Idaho but have not found anything conclusive, he said. But working with Schaefer and Smith has helped him create better animal testing.

“Coming to Idaho has helped us develop models to show what’s happening,” he said.

Schaefer caught Boxer’s attention when he gave a speech in California. Smith and Schaefer have gone to Washington to push for the establishment of a federal disease network.

“She said, ‘I really respect your passion because I’m a mother, too,’” Smith said.

Justin Hayes, program director of the Idaho Conservation League, said Schaefer already is making a difference in Idaho efforts to fight toxins like mercury and heavy metals. His testimony before environmental officials put a face to the threats that numbers can’t.

“He really crystallizes the issues from the abstract to the concrete,” Hayes said.

Rocky Barker: 377-6484

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