Fallon, Nevada’s deadly legacy
In a small town once plagued by childhood cancer, some families still search for answers.
One night in May 2008, in a modest ranch house in central Nevada, Ryan Brune woke with a headache. He had complained about the pain earlier that week, but his doctor said it was migraines. This time, he couldn't sleep, and so his mother, April, drove him to the hospital in Fallon, a farming town of 8,200 where the family had lived for most of Ryan's 10 years. He was an otherwise healthy boy, with fleshy cheeks and sandy blond hair, but a CT scan revealed a chestnut-sized mass in his brain. By morning, he was flown to Palo Alto, Calif., and the tumor was removed. Ryan had glioblastoma multiforme, a brain cancer that rarely afflicts children. His likelihood of survival was 1 percent.
The next summer, when Ryan returned to Fallon to spend his last months at home, his hospice doctor mentioned that a friend, Alan Levin, "might know something" about his illness. Levin, who phoned April in September, struck her as "a very smart man." He was both an immunologist and a lawyer, and in the 1980s, he had served as an expert witness in a high-profile lawsuit that accused two chemical companies of polluting drinking water and causing dozens of cases of childhood leukemia in Woburn, Mass. (The suit inspired the book and film, A Civil Action.)
Levin thought Fallon bore an unsettling resemblance to Woburn. From 1997 to 2002, Fallon had also suffered a high incidence of acute lymphoblastic leukemia among children; 16 cases were diagnosed, an alarming number for a small town. Health officials declared it the most significant childhood cancer cluster on national record and launched an investigation unprecedented in cost and scope. They never found the cause.
Levin suspected corporate negligence: He had evidence that a pipeline transporting jet fuel to the Fallon Naval Air Station had leaked underneath E.C. Best Elementary, where Ryan attended preschool. Levin believed both the leukemia cluster and Ryan's condition could be traced to fuel exposure. He based this theory on scientific findings that certain people, due to genetic variations, are less able to detoxify their bodies, and the buildup of contaminants can damage their DNA and cause cancerous growth. In his words, "Jet fuel selected out the susceptible children and gave them cancer."
Levin's claims horrified April. She had asked Ryan's doctors if his illness had anything to do with the leukemia cluster, but they told her that the cluster's cause was still unknown. Why hadn't she heard of the pipeline leak? At the time, she worked at the local airport, where she sometimes overheard people guessing at the cancer's cause. She became curious herself, when, in 2001, Sen. Hillary Clinton, D-N.Y., came to Fallon for a hearing, and April was tasked with refueling her plane. She brought her children to meet Clinton and handed her a letter. "I asked her to not forget about us," she recalled. "I said, 'My children are my life, and I need to know if we need to move out of Fallon.' " April heard nothing more. "I didn't really think about it again until my son got sick."
Ryan died on Oct. 2, 2009. Afterward, April spent sleepless nights on the Internet, searching "jet fuel," "cluster," and "glioblastoma" in various combinations. One night, she discovered a tally of cancer cases in Nevada and thought Churchill County's numbers seemed high. On Briggs Lane, where she and a dozen other families lived, she knew five people with cancer. She thought it odd that at the end of the lane, the pipeline ran beneath the irrigation ditch where her kids often played. "I was putting everything together," she said, but not all the pieces fit. There were many theories about what caused the cancer, some discounting the pipeline. She wrote the mayor; he never replied. She posted a query on an online forum, and a local woman, who had a brain tumor, invited her to lunch but asked to remain anonymous; her husband, who came from "a prominent Fallon family," would disapprove of their meeting. There did seem to be a lot of cancer in Fallon, she agreed, but she didn't know why.
In March 2010, Levin named April the plaintiff in a wrongful death suit against Kinder Morgan Energy Partners, the pipeline operator; ExxonMobil, the fuel manufacturer; and the city of Fallon. The suit also accused the Brunes' employers of contributing to Ryan's illness by exposing his parents to jet fuel without proper safeguards. A judge dismissed the city from the case. The employers settled, and the Brunes used the money to buy a house in Reno that summer. April remained only minimally involved in the case against Kinder Morgan and ExxonMobil, but, in November 2012, agreed to a local television interview. In Fallon, her story was greeted coldly. The Churchill County School District sent an automated phone message to Fallon residents, advising, "The pipeline has not and does not pose a public health hazard. We object to those who take advantage of the sensitive nature of this topic by providing inaccurate or misleading information."
It was clear to April that few in Fallon were willing to admit the possibility that the same agents that caused the cancer cluster may have had lingering effects. Around this time, she noticed a comment online: "It said that everyone lost a lot when the leukemia cluster happened. 'Do you really think we need to revisit this?' I felt sick. I lost this battle with my son, and I want to know why he got this cancer."
State health departments collectively receive thousands of cancer cluster reports from citizens each year, but of more than 400 investigations since 1990, only three – including Woburn's – found a link between an environmental contaminant and a cluster. Epidemiologists have long doubted the value of such investigations. In a seminal speech to the 1989 National Conference on Clustering of Health Events, Kenneth Rothman, founder of the journal Epidemiology, announced that, "With very few exceptions, there is little scientific or public health purpose to investigate individual disease clusters at all." Since scientists don't know what causes most cancers, linking a cluster of cases to the same origin often involves guesswork. (Linking two different kinds, such as leukemia and brain cancer, is even more challenging.) As a result, cluster investigations are thought to be fraught with error. Some scientists even dismiss clusters as matters of happenstance, or, as Atul Gawande wrote for The New Yorker in 1999, in "The Cancer-Cluster Myth," "the result of almost irresistible errors in perception" – of the human tendency to see coincidence as cause for alarm.
When alerted to a suspicious rise in cancer cases, epidemiologists must first determine if the numbers are indeed unusually high, or "statistically significant." If they are, investigators then catalog the things that distinguish the sick from the healthy and ask if any of those variables could cause the disease. These comparisons require more statistical tests, and to achieve a significant result, a large sample size. Often, clusters are so small that studies result in false negatives, finding no significant link between a toxic substance and disease even when one could exist. "It's a huge source of frustration for everyone, scientists and communities alike," said Rachel Morello-Frosch, a professor of public health and environmental science at the University of California-Berkeley. "By the time you see a relationship between environmental exposure and a health concern" – when enough cases have piled up to draw the link with any certainty – "you're basically doing a body count."
Fallon's cluster was an exception. A nurse reported it to state health officials in July 2000 after only five cases had emerged. At that point, officials decided it was worth investigating. They drew their study plot along county lines, including a population more than twice the size of Fallon's. Then more cases appeared, all of them in Fallon or close by. After 11 diagnoses, officials determined there was a one-in-232 millionth chance that the cluster was coincidental. Odder still was how quickly it arose, with diagnoses only weeks apart, as though the children had caught an infectious disease. The cluster looked like something that could be stopped. It also looked, one researcher told me, like "the perfect opportunity to determine the environmental cause of pediatric leukemia."
Other scientists had more modest expectations. Despite its significance, the cluster was small. Still, most agree that there had never been a case quite like Fallon's: An outbreak in an isolated patch of desert, its origins confined to a certain space and span of time, and in a community willing, at least at first, to undergo scientific scrutiny.
Fallon's potential as a test case prompted the Nevada State Health Division to dedicate its epidemiologist, Randall Todd, to it almost full-time. For guidance, the agency assembled a panel of experts, including Thomas Sinks, associate director for science at the National Center for Environmental Health, and Malcolm Smith, head of pediatrics for the National Cancer Institute. Early in 2001, when it was clear the state could not tackle the problem alone, the Centers for Disease Control and Prevention agreed to investigate – the first time it had probed a cancer cluster in 20 years. The CDC was encouraged, in part, by new technology. Prior investigations relied heavily on interviews to find common exposures. Now, investigators could detect trace contaminants in blood, urine and fat at levels lower than before. They planned to gather samples from leukemia patients, their families and healthy residents and compare them to each other and to national averages. The Nevada Department of Environmental Protection and the Agency for Toxic Substances and Disease Registry, meanwhile, would search for sources of toxic exposure.
National politicians took interest, including senators Clinton and Harry Reid, D-Nev. At a hearing in Fallon before the investigation began, Clinton ventured that "advances in determining how to prevent cancer could really be attributed to the extraordinary response in this community." For that, she said, "I think the entire country and maybe even the world will be grateful to Fallon."
These were lofty words, aimed less at parents, whose desperation had little to do with scientific advancement, than at residents who might have seen the scrutiny as too great a sacrifice. Still, they reflected a real and collective hopefulness at the time that answers would be found – that the investigation would yield something more than an enduring sense of uncertainty.
From downtown Fallon, it is not far in any direction before alfalfa turns to sand and rabbitbrush. The desert is everywhere. In the spring, ditch water takes on the color of the earth. The water comes from the Carson River, dammed in 1915. Before that, Fallon was a string of ranches tied to the river's scanty offering. The town has never counted on water, but it can always count on wind and sand. On windy days, residents say, "Real estate is really moving." One told me that Fallon is a "sharing" community: "You get a little of your neighbor's property. They get a little of yours."
The June day that I walked Briggs Lane, where the Brunes once lived, the wind had scoured the road and deposited small dunes along a livestock fence. A light was on in a nearby house. I knocked, and a man came to the door. I asked if he knew of any cancer in the neighborhood. Two men had lived in the house before him, he replied; one died of liver cancer, the other of leukemia. Next door, an elderly woman waved me into the yard. Someone on the corner had breast cancer, she said. Then she eyed me curiously. Had I heard of the leukemia cluster? Those were "separate cases," she explained. "Not the same family or church group. Not much to make a deal about."
Most people I met spoke casually of disease: "Sure is a lot of cancer here," or, "Seems about everyone I know has some kind of cancer." Until recently, there was no reliable tally of diagnoses in Nevada. Most western Nevadans suspected of having cancer were sent to hospitals in California, and their cases counted toward the California Cancer Registry. Fallon residents heard of new cases by word of mouth, including two middle school boys diagnosed with leukemia in the fall of 2012. Since the cluster investigation closed in 2004, at least five children have developed leukemia, but the boys' diagnoses earned the most attention. Though each had a different kind of leukemia and officials said the cases were unrelated, suspicion arose that the cluster had returned.
Peoples' guesses as to what caused the cancer vary. Some say the cluster was a media myth, or that "all the new people coming to Nevada" prompted the spike in cases. An elderly woman, whose nephew is an epidemiologist, told me, "If you throw up a handful of rocks, you're going to end up with clusters of rocks." When I asked if she thought there might be something in the water, she said, "No, honey. I think we pretty much come with what we get." Others attribute it to "something at the Navy base"; a pipeline leak; pesticides; radiation from an atomic bomb test site 20 miles to the southeast. Some believe that whatever caused the cluster lingered; they bathe their children in bottled water. One mother said she feeds her sons extra vitamins "to counter whatever it is that's doing it." Many people simply rolled or averted their eyes at mention of the cluster.
"There are a lot in Fallon that want it all behind them," Jeff Braccini, whose son survived leukemia, told me in July. "The mayor – if he could pay to have the Internet slicked, I know he would." Braccini has a chiseled face and small blue eyes. He had just returned from the Navy base, where he is an aircraft mechanic. We sat on his porch, watching geese turn circles in a pond. "I don't think it's the kind of thing you can just shove away," he said. "Kids died from this. And there's still kids getting sick."
His son was diagnosed in December 2001. The CDC had nearly finished collecting samples from study participants but would not release its results for another year. Braccini initially believed the investigation would find answers, but his confidence waned when he joined Fallon Families First, a program founded by the mayor's wife to offer emotional and financial support to cluster families. At meetings, parents criticized investigators for their slow progress. It had taken the CDC a year to prepare equipment and get permission to study human subjects. By the time investigators collected samples, most children had finished treatment, and some had died.
When his son stabilized, Braccini immersed himself in the scientific literature. He understood that science takes time, that the cause of leukemia was uncertain, and that there might be not one cause, but several. He knew, too, that an epidemiological investigation would not answer certain questions; it could reveal contaminants in children's bodies, for example, but not whether those contaminants had acted in tandem to cause leukemia.
Still, Braccini believed there were holes in the investigation. He suspected one difference between his son and healthy children was not the degree to which they were exposed to toxic substances, but whether they had the genetic tools to detoxify their bodies. He had heard health officials mention this possibility, but genetic studies had only a minor role in the CDC investigation. Braccini also faulted the state's Department of Environmental Protection for not sampling air and soil more extensively. Investigators collected soils from yards and dust from inside houses, but they seemed to look for contaminants in the wrong places, swabbing television screens and carpets instead of corners families rarely cleaned or ditches where children played. When parents voiced concerns, said Braccini, "It was always the same response. 'That's not in our protocol,' " or, " 'You just don't understand the science.' "
Experts appointed by the state Health Division named three suspected causes. The first, arsenic, was ruled out. Fallon's drinking water had the highest level of any municipality in the nation, 10 times the federal standard, but it occurred naturally and existed long before the cluster appeared. And although repeated exposure can cause skin and bladder cancer, there is no evidence it causes leukemia. A second theory, that a virus infected the children, could have explained why the cluster grew so quickly. Scientists have linked viruses to other kinds of cancer – human papilloma virus to cervical cancer, for example – and research suggests that certain infections can trigger leukemia. But investigators found nothing of note when they tested children.
The third theory – exposure to pollutants – implicated jet fuel. Though not classified as a carcinogen, it contains benzene, which has been linked to acute myeloid leukemia. Only one child had AML; if fuel was the cause, investigators believed, there should have been more. But the fuel, which suppresses the immune systems of mice, also contains chemicals with unknown toxicological effects on humans. Investigators agreed to inspect two possible sources of contamination: The fuel that Navy jets sometimes dumped over the town's outskirts before landing, blown over on the wind, and the pipeline that carried 34 million gallons of fuel through Fallon annually. In the spring of 2001, officials traced the pipeline on foot and by plane, looking for black soil, distressed vegetation and other signs of a leak. Kinder Morgan injected a tracer chemical into the pipeline and dragged a sensor over its length. No leak appeared; investigators confirmed that the pipeline was sound.
In May 2001, a Reno Gazette-Journal reporter, Frank Mullen, who also walked the pipeline, challenged company claims. He found broken vents and corroded electrical stations – signs, he said, that the pipeline was poorly maintained – and spoke with Scott Meihack, the elementary school principal, who told him that teachers reported "occasional fuel smells." Kinder Morgan representatives visited Meihack and decided the odor came from a school bus lot. This struck Mullen as suspicious. "They said the pipe never leaked in 50 years since they put it in," he told me. "Then you ask a retired pipeline guy, and he says, 'Yes, they freaking leak.' Gas tanks leak. What about a tank that's 63 miles long, welded every few yards, in the most alkali ground in the United States?"
That summer, Kinder Morgan announced it would make repairs. The repairmen worked in the dark. Some parents watched them. One night around 11 p.m., Braccini got a call from Floyd Sands, whose daughter also had leukemia. Sands said that workers were digging up the pipe by the school. As he neared, Braccini glimpsed a dump truck, a backhoe and several white trucks parked around a hole. "Floyd started snapping photos," Braccini recalled. "That's what got them really pissed. They shooed us away."
Braccini doubted that jet fuel caused the cluster. He was sure the pipeline had leaked – he could smell fuel – but his son had not yet started school. Nor had Ralph Seiler, a U.S. Geological Survey hydrologist with whom Braccini corresponded, found hydrocarbons in Fallon wells. Still, Braccini began to wonder: Why hadn't investigators sampled soils from irrigation ditches, the schoolyard or along the pipeline?
"Sometimes I think they didn't do these things, or maybe they didn't tell us, because they were afraid parents would say, 'That's what it is,' and point the finger," Brenda Gross, whose son had leukemia, told me. In August 2002, Gross and eight other parents met with Jan Schlichtmann, the lawyer who prosecuted the Woburn case. Although Schlichtmann had amassed an enormous body of evidence implicating two companies in Woburn, the lawsuit lasted seven years and left him broke, and the defendants never admitted fault. Schlichtmann advised the Fallon parents to use litigation as a last resort. So they formed Families in Search of the Truth – FIST – to promote more thorough scientific research. "I truly was not looking to find fault," Gross said. "But the state had blinders on, and if you follow a straight path and never deviate, those needles in a haystack are a lot harder to find."
"We felt like we were in search of the truth," Randall Todd told me one September morning at his Reno office. Todd, 60, is an earnest, balding man, with the manner of one accustomed but not hardened to criticism. He left the Nevada State Health Division in 2005 and is now director of epidemiology and public health preparedness for Washoe County. "But we're the government," he said. "We're always going to be under some suspicion that we're trying to protect industry or the military."
Throughout the investigation, Todd reminded Fallon residents that the odds of finding a cause were low. "That said," he explained, "we had a terrible time managing the expectations of this community." Critics read officials' caution as lack of resolve. The director of the Health Division resigned after an administrator chided her for "not moving quickly enough." Todd was instructed to speak frequently to the press. He was not treated kindly. When a reporter asked why he didn't "think outside the box," he replied, "You're right. I haven't consulted psychics or ouija boards. There's a box outside of which I won't go, and that box is science." On the Phil Donohue Show, a father called him "mister" instead of "doctor," saying Todd was a bureaucrat, "not a real doctor." NBC's Ann Curry asked, "Isn't it true that some children have died?" "Yes," he replied. "Dr. Todd," Curry said, "how can you live with yourself?"
Todd rarely strayed from his script. "I tried to reassure people that good science is seldom fast," he told me. "I don't think they liked that message, and there were others coming around with messages more likeable than ours."
One was Alan Levin, April Brune's attorney, who called Todd in the fall of 2000. He introduced himself as "Doctor Lawyer Levin" and a Woburn investigator. According to Todd, "He said, 'I think this could be the cluster where we find the viral trigger of childhood leukemia.' " Todd agreed but soon grew wary of Levin and his motives. "He indicated that if he saw some deep pockets responsible for this, he'd go after them," recalled Todd. "He thought law was one of the greatest forces for social good in this country. You'll never hear a physician say that." Levin also claimed there was a test that could tell if a child was genetically predisposed to leukemia. Todd consulted several experts who assured him that such a test did not exist. He skimmed A Civil Action: "There's a point in it where a judge accuses him of 'screwball science.' " By then, Todd had stopped talking with Levin.
Levin continued to attend public meetings, often with Gary Ridenour, the local physician and Ryan Brune's hospice doctor. They made an odd pair. Levin, who once held research appointments at the University of California-San Francisco, a top-ranked medical school, is gaunt, well-dressed, and frequently mentions his friendship with the late Mafia boss, Joseph Bonanno. Ridenour, who styles himself "the last country doctor," earned his degree from the Universidad Autónoma de Guadalajara, in Mexico, and, for a period in the 1990s, lost his license after illegally dispensing painkillers. (He now runs a bustling practice and has been voted "best doctor" in the local paper seven years in a row.) Todd believed both men were purveyors of false information. At one meeting, when an attendee asked if there really was a test for susceptibility to leukemia, and Todd said no, Levin yelled, "You know that's not true!" At another, Levin referred to the cluster as "a simple, simple problem." This criticism still haunted Todd. Once a legislator told him, "Maybe I've watched Erin Brockovich too many times, but I just feel that if we all go out there and dig, we'll find the answer."
"In the movies," Todd told me, "it's not about an epidemiological investigation," which seldom has clear heroes and villains. "It's about an attorney who rides in and holds a company responsible for putting something in the environment, all wrapped up with a nice bow on it. These people badly wanted to find the answer. We wanted to make sure they understood that we might provide an answer, but we might not. I don't think they heard that. Would I hear that if I had a sick child? I don't know that I would."
One June morning, I met April Brune at her house in a hilly suburb above Reno. She is a warm, unflinching woman. Her face was ruddy from watering plants, her hair pulled back in a ponytail. The lawsuit had made little progress, she said, but Levin assured her that "things are happening." She had a good feeling about him. He would take a fee if they won, but he wasn't in it for the money, nor was she. They talked about using the funds to build a pediatric cancer research center in northern Nevada.
Still, she wasn't any closer to knowing what caused Ryan's tumor or whether it was related to the cluster. Sometimes, she blamed herself. "It kills me, all the 'what ifs' in my head," she said. "What if we had moved? What if it was when I smoked pot in high school? Stupid things like that." She couldn't help but feel that those around her knew something she did not. Once, while stopped at a traffic light beside a Kinder Morgan truck, she briefly thought about inviting the driver for a drink to see what he might tell her. "You just want the 100 percent truth," she said. "You have all these people saying, 'No, it's not the pipeline,' and then you question yourself. Am I doing the right thing? I believe the pipeline leaked, but I don't know beyond a shadow of a doubt. I wasn't there. And I haven't found someone who was – who can tell me, 'I fixed that leak.' That's my struggle. I don't want to blame someone wrongly for something so tragic."
There is little doubt that Ryan was exposed to jet fuel. While April was pregnant, her husband, Tim, fixed airplane fuel cells; later, she refueled planes at the airport. Studies show that workers regularly exposed to fuel exhale and off-gas hydrocarbons long after contact. Since the Brunes' employers have settled, though, the case now hinges on whether the pipeline leaked, which Kinder Morgan continues to deny.
A leak seems likely, though there is not much more than sworn testimony to prove it. The most compelling witness is Mark Witten, whom Ridenour, the local doctor, invited to Fallon early in the investigation. Witten was a professor of pediatrics at the University of Arizona and spent 20 years studying jet fuel toxicology for the Air Force. In depositions, he describes visiting the repair site by E.C. Best Elementary on three occasions. From 20 yards away, he was "overwhelmed" by fumes. Once, he says, fuel got on his boots, and his rental car company charged a cleaning fee. He later returned to Fallon with a tree-ring researcher, Paul Sheppard, to extract wood cores from five cottonwoods roughly 50 feet from the repair site. They detected naphthalene, a component of jet fuel, but when they returned months later to replicate the study, a road had been moved and the trees cut down.
A harder question to answer is if jet fuel caused Ryan's tumor. In October 2012, at Levin's request, Witten acquired brain tissue from Ryan and two individuals without cancer. Witten noted two unusual things about Ryan's sample: It contained tungsten, a heavy metal, and it had a "vastly different hydrocarbon profile." With so few samples, Witten could not say why, nor could he identify the hydrocarbons as jet fuel. "Is it due to him being exposed?" he said. "I'm not willing to speculate."
Tungsten is another inscrutable piece of Fallon's cancer puzzle. Late in 2002, the CDC announced that 68 percent of study participants had high levels of tungsten in their urine. Investigators met first with cluster families to review results. There was no sign, Braccini recalled, that his son Jeremy was exposed to jet fuel, but some numbers stood out. Jeremy had above average DDE, a byproduct of DDT. He had twice the arsenic as the average American adult. He had 60 times the tungsten. "Once I saw that," Braccini said, "it hurt me to put my son in the bathtub."
The numbers surprised investigators, who had not considered tungsten a suspect. Little is known about the metal's toxicology, and it was even unclear where the tungsten had come from. Braccini believed he knew. In the late 1990s, he worked for Kennametal, a firm that refines tungsten 10 miles north of Fallon and mills it at a plant in town, next to an elementary school. The Reno Gazette-Journal revealed that until 1990, the state exempted Kennametal from the Clean Air Act, allowing it to burn waste in the open air.
But investigators avoided mention of Kennametal when they presented the results to the public. Ralph Seiler of the USGS insisted that tungsten, like arsenic, occurs naturally in Fallon's aquifers. To be sure, the CDC gathered urine samples from residents in three Nevada towns without tungsten mills and found that all had tungsten levels above the national average. The agency concluded, "Exposure to tungsten in Churchill County does not appear to be unique." The report did not mention the study's most striking result: Fallon children had two to four times as much tungsten as children in other towns. The CDC nominated tungsten to the National Toxicology Program for further study; the metal is still awaiting analysis.
Investigators had not found the cause of the cluster – both sick and healthy individuals exhibited tungsten – but they had, parents believed, found reason for concern. Not everyone agreed. A February 2003 editorial by the Lahontan Valley News read the lack of proof as permission to put the issue to rest: "It is reassuring to know nothing in the environment is an acute health hazard." When Todd recommended that residents drink bottled water until a water treatment plant was built, Fallon's mayor, Ken Tedford, dismissed the advice as alarmist.
Tedford's reaction departed from his earlier handling of the cluster. "If I was moving my family to Fallon," he had said at one public meeting, "I would want to know that this community addressed the problem – it didn't deny it was there – and it helped those families that were suffering." As time passed, however, he became less responsive to parents' questions and dismissive of research beyond the official investigation. "I would tell the mayor that we needed to promote more research so people could make the decision to live here on their own terms, but he didn't want anything with leukemia tied in with the town," Brenda Gross told me. She believed his reasons were economic. Between 1999 and 2002, Fallon home values fell 15 percent. The Navy base allowed sailors' families to remain at their former bases until the investigation was complete. Business owners bemoaned the situation; an auto dealer blamed his 40 percent revenue loss on "the new image of Fallon."
When I asked parents if they felt supported by the community, some made an important distinction: "The community really looked at our children as their children," Carinsa Phelan, whose daughter survived leukemia, told me. "But there was not as much support in finding out what was going on, because these are big companies in Fallon. It was like, 'Yes, I'm sorry your children are sick, but this is our livelihood.' " Braccini said he sometimes felt "blamed for the downfall of this community." Once, at the hospital, waiting for his son's blood test results, he overheard a lab technician say that the cluster families "brought the cancer with them" to Fallon. " 'My son was conceived, born, and raised here,' " Braccini recalled saying. " 'Is that not good enough for you?' They just stared back at me. People were polite, but it was a phony kind of polite. I realized the general public knew only a small amount of what transpired, so you felt alone in what you knew."
In 2003, FIST members met regularly to discuss strategy. Braccini and Gross wanted to recruit scientists to do better environmental sampling and investigate hypotheses they believed state and federal agencies neglected. Though Sen. Reid offered to raise funds for more research, parents found little support otherwise. Their numbers dwindled as families moved away and time passed without new diagnoses.
Officials declared the investigation closed in 2004. "As long as parents stayed involved, someone somewhere would try to keep the research going," Gross said. But she worried that scientists would refuse to work with FIST. Two parents had filed wrongful death suits against Kennametal and the city. "I tried to tell families that we had to stay open-minded if we wanted to get any research done. You could tell that some were looking for information to blame someone with." A father began to withhold findings due to confidentiality agreements with his lawyer. Gross didn't blame him; through subpoena, the case would likely uncover corporate documents inaccessible to the public. She also sensed a different desperation in those who sued: "They lost their children. Mine lived."
But the disagreement broke up the organization. Gross stopped attending meetings. She had spent much of three years away from home for legislative hearings and media appearances. Through it all, she worked full-time as an office manager. She realized the toll it was taking one morning when her daughter missed the school bus. "After everything we'd been through and coming up empty-handed, I just had to let go and focus on my family."
Phelan, who left Fallon in 2004, said something similar: "I think I lost focus on what was most important, which was my child and getting her better, because it became all about finding out what was going on."
Todd had not intended the search for a cause to end with the official investigation. He described to me the thin line between "making sure there's nothing obvious lurking in the community" – government investigators' role – and doing research. "We said, 'We're going to go up to this point, and others can go beyond that.' We had the sense that even though this was a highly significant cluster, it wasn't large enough to find the answers, and we hoped that researchers would be able to cast a larger net." In other words, scientists would have to combine Fallon's samples with those from leukemia patients in the larger population and look for things that set Fallon's apart.
For years after the investigation closed, several scientists did carry on. In 2004, Sen. Reid secured $250,000 for Jill James, a professor of pediatrics at the University of Arkansas, to investigate a difference in the way Fallon children with and without leukemia metabolized toxic substances. James found that sick children had less glutathione, an antioxidant, in their blood. This could mean that children who developed leukemia were less able to rid their bodies of arsenic, tungsten and jet fuel. Over time, these lingering contaminants may have damaged their DNA, making them susceptible to cancer. James never published the findings. She had only 20 blood samples – not enough to reach a conclusive result.
In 2006, Sen. Reid secured another $700,000. Remaining FIST members, with help from the University of Nevada-Reno, solicited proposals. Three research teams won grants, including Witten to study the role of tungsten in leukemia development. After detecting naphthalene in the trees by the school, Witten and Sheppard had measured tungsten using a similar technique. Among their most compelling discoveries is that tungsten levels are significantly higher in tree rings since the mid-to-late 1990s, right before the cluster began. They have published more than a dozen scientific papers on the topic, many in reputable journals. But their work has drawn criticism, first from Todd, who recounted a phone call in which he accused Witten of bad methodology. Witten did not recall the conversation, and when I asked about Todd's other criticism – that Witten shared his results with the press before publishing them – he said, "That's just a cheap shot."
Other critics are Seiler, the USGS hydrologist who maintains that the tungsten is natural, and scientists employed by Kennametal, who accuse Witten and Sheppard of misrepresenting data. Both have been deposed for ongoing litigation against Kennametal, and lawyers have subpoenaed their data and emails. Witten does not hide his opinions. "The story in all of this is how big companies go out to these little towns, and they're the only employer, and they get away with murder, essentially, in the way they pollute," he told me. Sheppard is more cautious: "I cannot say that tungsten causes leukemia. It may appear that one side wants me to survive and one side doesn't, but that's not my problem."
There is only one team of scientists still actively researching the cluster, led by Joseph Wiemels, a professor of epidemiology and biostatistics at the University of California-San Francisco. In October, I met Wiemels and his collaborator, Stephen Francis, a doctoral candidate at the University of California-Berkeley Department of Epidemiology, at the Childhood Leukemia Research Center. Wiemels wore wire-rimmed glasses and the studied look of a laboratory scientist. Francis had sun-bleached hair to his shoulders. Wiemels received one of Reid's grants in 2006 to investigate the possibility that a virus triggered the cluster. According to a respected theory, leukemia clusters may arise when waves of transient people spread infection to an otherwise isolated population. Fallon's population shifts annually due to the Navy base; at the time of the cluster, there was a spike in childhood leukemia among families in the armed forces at large.
For his research, Wiemels needed Fallon children's blood samples taken before treatment began. (Treatment obscures signs of prior infection.) He also needed data indicating children's histories of infection. In 2007, he met with Todd, who informed him that the data were gone; his hard drive had been erased when he left the state office. Wiemels contacted the CDC, which had collected similar data, but was told he could not see it without approval from the families. "The problem was that by the time we started working on it, half the families weren't talking to anybody, not even other families," he said. As for diagnostic blood samples, the organization that routinely collects them was in transition during the cluster, and only four from Fallon leukemia patients were saved.
Despite this, the two scientists were markedly uncritical of the state and CDC. They wished diagnostic samples had been preserved and that data were available to qualified researchers. But they compensated by grouping Fallon samples with others from California leukemia patients and cataloging the viruses in each. There is preliminary evidence that the Fallon samples harbor a different virus. It is painstaking work. "The older I get, the more I realize how little we know about childhood leukemia," Wiemels said. He did not fault investigators for failing to find an answer; there simply wasn't enough scientific knowledge to answer the question they had asked.
"It wasn't the CDC's mandate to find the overarching cause of leukemia," added Francis. Nor was Fallon the place that would happen. "I think these investigations will contribute something, but I don't think there's going to be one cause." Scientists have become increasingly convinced that leukemia is the culmination of a long chain of unfortunate events – a "causal pathway," as Francis put it – each link representing a genetic mutation provoked by toxic exposure, infection, or another challenge to the immune system. There is evidence, too, that the pathway begins while a child is in the womb. "So is it an in-utero hit that's the cause? Is it a toxic chemical? Is it immune suppression? Is it a virus? Saying there's one particular cause is a difficult thing to do."
When the two boys at Churchill County Middle School were diagnosed with leukemia in 2012, Superintendant Bus Scharmann called Randall Todd. "We talked about how, because of what had happened, it's so easy to say the wrong thing and get this community all whipped up," Todd said. "I don't mean that we shouldn't tell the truth, but it's how you frame it, whether it creates a panic or not." It was highly unlikely, he advised, that this was another cluster or part of the last.
I called Scott Meihack, now principal at the middle school, to ask how he had handled the news. "No offense, ma'am," he started, "but I understand in your line of work there's pressure to sensationalize." Local papers quoted Ridenour claiming that the cluster had returned. Townspeople responded as before: They sold T-shirts to benefit families. Students inscribed wristbands with the boys' names and shaved their heads. No parent mentioned the cluster to Meihack, though it was on his mind. "The sad part is that it was like, 'Here we go again,' " he said. "One thing that's been so traumatic is all the coverage this community got early on. The damage has been done. That's one of the greatest tragedies aside from the leukemia – not being able to move past it."
It is safe to say that most people in Fallon do not want to talk about the cluster anymore. Only one county commissioner returned my calls. The mayor, according to his secretary, was always "busy" or "away," and when I dropped by his office, he told me that he hadn't even 15 minutes.
One need not look far to find signs of a place struggling to remake itself. Drought and the recession forced dairy farmers to sell their herds. Many businesses are shuttered. The theater is up for sale. In September, a motel advertised $40 nights and "new management." Still, there is a certain stubbornness about the town. It belongs to the only county in the nation with its own telephone company. Many businesses are owned by the same families who first farmed the region, and the "Fallon Fathers," as they are often called, are content to keep it this way.
The insularity is one reason, Tina Kroepel said, why "Fallon is quiet about a lot of health issues." She directed the town's Nevada Cancer Institute satellite office from 2006 to 2012, providing counsel and financial support for patients and their families. "It just comes down to the reality that we are sincerely happy in our rural community, hard-working, very family oriented and extremely PROUD," she wrote me. "I sincerely don't mean that in arrogance, we are just very used to relying on the resources, family & friends that we have."
April Brune said something similar. When she returns to Fallon to see friends, she sometimes remarks to them how difficult it must be to live there, given the uncertainty. "It's frustrating to think that the truth may never come out and that whatever it is could still be there," she told me. Her friends change the subject. "That's how I was. I didn't want to think that my kids were going to get sick. I loved my little farming community. They want their home that's tucked away in the middle of the desert, and I can't blame them for it."
Only four cluster families remain in Fallon. When I asked Jeff Braccini if he considered leaving, he said he was anchored by work and family, though staying had not always been easy. "It took me years to pull my mind out of it," he said. Sometimes, his coworkers tell him about other sick children. He is willing to talk but careful about drawing conclusions. He sees Tedford and other town officials at restaurants and house parties, and they often say hello. Braccini takes this for respect – "I think they know I've never screamed conspiracy theories" – but he still senses their discomfort.
Since Carinsa Phelan moved away, she told me, "I try to think about it as little as possible, because it was a very dark time." Occasionally, she searches the Internet to see if an answer has been found. This was how she learned about Ryan Brune. Last spring, while in Reno, Phelan met April for dinner. "She asked me how I found out about my daughter being sick," she recalled. "I started crying. It hadn't dawned on me that I still had those emotions." April also began to cry. "I wanted to tell her to not give up, to try to get to the bottom of it. I feel like I kind of gave up because I didn't lose my daughter. I was able to move on and raise my child. It's a different crusade for her."
I met April again at the Reno Air Races in September. Her husband, Tim, was showing a refurbished fighter jet, and we sat in the shade of a wing. She hadn't heard from Levin in some time. He had recruited another attorney, and the trial had been postponed. Now and then, she came across something interesting on the Internet and forwarded it to Levin. He always seemed pleased and encouraged her to "keep digging," but the work consumed her, and Tim asked that she "let Al take care of it."
Tim dealt quietly with his pain. April, to cope with her own, volunteered for the Make-a-Wish Foundation, which had sent Ryan to Hawaii before he died. The foundation kept a list of wish requests, and whenever a child from Fallon appeared, April took the boy or girl on. She bought them gifts and organized parties. She came to know the children's parents but never told them about her son.
That fall, a girl died of brain cancer before getting her wish. The mother sent a funeral notice, but April could not bring herself to attend. Recently, the mother called, and April, sensing she wanted someone to talk to, invited her to lunch. I asked if she would mention Ryan this time, but she said no; the woman was grieving, and, besides, how could she explain everything that had happened? The case was not for money. It was not even to force a company to admit fault. A parent who loses a child never wins. It was only to answer a question that anyone would ask. So she would spare the woman her story, and she would listen, because what could she say that wouldn't leave a parent to wonder?
Sierra Crane-Murdoch is a contributing editor at High Country News and a 2013 National Health Journalism Fellow.
This coverage is supported by contributors to the High Country News Enterprise Journalism Fund, The California Endowment Health Journalism Fellowships, a program of USC's Annenberg School of Journalism, and The Mesa Refuge.