In May 2001, Linus Nordbrock, 2 1/2-years-old, was diagnosed with leukemia. (He's 5 now and doing well.) In May 2004, his mother, Terry Nordbrock, 39, quit a job she loved to work unpaid for an organization she co-founded, Families Against Cancer and Toxins.
"When Linus got sick, I started looking into childhood leukemia," says Nordbrock, a research librarian who's now working on a degree in epidemiology at the UA. "I didn't get the feeling the subject was being taken seriously. No one, for example, seemed interested in the fact that the number of new leukemia cases in the United States has been increasing by about 1 percent per year for 30 years, while rates in the Third World have stayed the same. How many people know that?" Nordbrock asks.
It seemed to her that no one with power was on top of the subject, and that the scientific establishment was willing to look at anything as a possible cause of childhood cancer, except environmental toxins.
"They've got viral theories, and population-mixing theories and a theory that says that kids get sick in this country because they're kept too clean as babies. Now they're really interested in genetics. OK, everyone thinks leukemia is caused by multiple factors. But I'm actually more alarmed by all the efforts not to alarm anybody about environmental hazards than by anything else," Nordbrock says.
Last year, she established FACT with Trisha Olma, also a Tucsonan, a cancer mom and an activist. Nordbrock, Olma and the 20 or so other members of the group would, of course, like the answer to the question that haunts all cancer families: "Why did my child get sick?" They've accepted that the answer is probably decades away, but that doesn't keep them from trying to speed things up.
FACT is "dedicated to finding the cause of childhood cancers, with the goal of preventing further cases." That translates into outreach, education, support for cancer families, advocacy for prevention and research, and opposition to anything that puts more toxins into the environment. For example, FACT strongly opposes plans to increase flights at Davis-Monthan Air Force Base, in part because of concerns about the safety of JP-8 jet fuel.
Nordbrock says that there are very basic steps the government could take to collect better cancer data, a necessary basis for research.
"There is no true, national cancer registry. The National Cancer Institute and the Centers for Disease Control compile statistics collected by the states, and they all count differently," she says.
She explains that the U.S. Department of Health and Human Services could require that diagnosing physicians get names and addresses at the time of any cancer diagnosis and send them in. They could require that hospitals keep the blood samples they take from newborns when they test for congenital diseases so that researchers could look back and see if patients' genes had changed since birth. They could require that hospitals keep a test sample from every cancer that's diagnosed.
FACT advocates careful checking for health hazards in school buildings and public education about chemicals in household products.
"The stuff with a big skull on it, you know that's bad and to be careful. But there are all sorts of things you can buy at Home Depot--paints and glues, detergents, Liquid Paper, for heaven's sake--that contain hazardous chemicals," Nordbrock says.
Mark Witten, toxicologist and lung-damage researcher at the UA, agrees.
"Somewhere between 1,000 and 2,000 new chemicals are created and put into the environment each year. One or 2 percent of them have been tested for toxicity," he says."
He points out that young children are more vulnerable to toxic exposures than anyone else.
"Their metabolisms run three times faster than ours, so they're taking in more of whatever's around than we are. They're naturally going to show the effects of environmental toxins first."
There's no way to be concerned about childhood cancer in Southern Arizona and not focus on the leukemia cluster in Sierra Vista--a military, ranching and retirement town about 60 miles southeast of Tucson. Since 1997, Sierra Vista has had too much leukemia. It currently has three times the incidence of childhood leukemia expected in a town its size. Out of a total population of about 40,000, 12 children have been diagnosed; two have died. The latest to pass was Susan Taylor, 14, who died Aug. 30. There have been no new reported cases in Sierra Vista since November 2003.
After vigorous lobbying by Cochise County and Rep. Jim Kolbe, the Centers for Disease Control announced early this year that it would collect biological samples in Sierra Vista. The testing has yet to begin, and analysis of the samples will take up to two years.
Meanwhile, Witten and his colleague Paul Sheppard, a dendrochronologist at the UA, have been working on the clusters, taking an entirely different tack. They're independently investigating environmental changes in Sierra Vista and in Fallon, Nev., a town of 8,000 that has the worst leukemia cluster ever recorded--and several similarities to Sierra Vista.
Sixteen children have been diagnosed in Fallon since 1997. Three have died; two relapsed this summer. There have been no new cases in two years. A CDC investigation concluded in 2003 that there are no links between environmental contaminants and the leukemia cases in Fallon.
Witten anticipates releasing his findings on air quality in both Sierra Vista and Fallon in a month or two, after he and Sheppard collect and analyze a third round of air samples from both towns. Their work also must be formally reviewed by a committee of scientists at UA.
"We have had some interesting results from our first two rounds of air samples," he said. "We're checking one more time, at a different time of year, to confirm that what we are seeing is the truth."