Thirteen-year-old Emma Grace Findley was having a routine eye exam in 2014 when her doctor saw that her optic disc was swollen, an indication of brain swelling. Her father immediately called Emma’s mom, Kari Rhinehart, who was working her nursing shift at a nearby hospital’s emergency room. He asked his ex-wife if she had ever heard of papilledema, the term the eye doctor had used.
After a conversation with the hospital’s ophthalmologist, Rhinehart had Emma come straight over. One MRI and a few hours later, a doctor displayed the scan results on a computer. The images revealed several tumors in Emma’s brain: glioblastomas. “When he pulled them up, I knew she was going to die,” says Rhinehart.
Three months and nine days later, Emma passed away.
Emma is one of 68 children in Johnson County, Indiana, diagnosed with cancer over the past decade, according to If It Was Your Child, a nonprofit Rhinehart cofounded in 2015. The National Cancer Institute lists the county’s pediatric cancer rate at 21.7 cases per 100,000, which is more than three cases higher than the state and national average. Among all US counties, Johnson ranks in the 80th percentile of cancer diagnoses in children. Some of the cases involve rare cancers, especially in patients so young.
In the summer of 2014, 10-year-old Zane Davidson learned that he had acute lymphoblastic leukemia. Whenever his stepmom, Stacie Davidson, took him for chemotherapy treatment, she would see at least three other kids from her county in the waiting room, which made her wonder if the cancers could be related in some way. Could it be something the kids were drinking? Eating? Breathing?
Eventually Davidson emailed a local news reporter, Sandra Chapman, who learned through her reporting that half of the 68 children who had cancer lived in or had a connection to Franklin, a town of about 25,000 in the middle of the county, about 25 miles south of Indianapolis. Zane had lived in Franklin for 5 years, Emma for 10.
Searching for Answers
After Chapman’s first news story aired in November 2015, Davidson met with a number of other parents of cancer patients, including Rhinehart, at the local Pizza King. Within months, the two mothers founded If It Was Your Child to promote awareness and policy change around TCE and other pollutants that threaten the public’s health.
On a Google map, the two women digitally marked where each kid with cancer had lived when diagnosed. Then they contacted an environmental nonprofit focused on toxic site investigation and remediation called the Edison Wetlands Association. (EWA is based in New Jersey, the state with the highest concentration of Superfund sites.) Looking at the Johnson County map, EWA’s project manager, Shannon Lisa, filed Freedom of Information Act requests on nearby toxic sites and began poring over the documents she received — more than 30,000 pages.
Three possible culprits emerged in Franklin — Webb Wellfield (a former oil field), Camp Atterbury (a military base), and the former Amphenol Corporation site (a plant that manufactured electrical parts). The US Environmental Protection Agency (EPA) had investigated both the oil field and the military base, but the documents showed that the agency had never resolved its concerns about ground pollution on the manufacturing site. So EWA focused its efforts there.
According to the company and government documents, Amphenol sent its wastewater into the municipal sewer system from 1961 to 1981. And in a 1985 letter, the Indiana State Board of Health noted that leaks on the plating room floor, where employees rinsed parts with industrial fluids, had likely contaminated groundwater. The contaminants included trichloroethylene, or TCE, a chemical used as a degreaser and often as a dry-cleaning solvent. TCE has been linked to kidney cancer and increased risk of leukemia, and the National Institutes of Health listed it as a known human carcinogen in 2016.
The EPA identified the Amphenol plant as a potential hazardous waste site regulated under the Resource Conservation and Recovery Act in 1985. Eventually the government required the company to install a pump-and-treat system that would filter the site’s groundwater and strip the volatile compounds that were being emitted into the air from the ground.
The EPA considered the site clean in 1998, despite documents showing that the agency never determined how far the TCE had migrated from the Amphenol site into the surrounding area’s groundwater and soil. Meanwhile, the polluted plume spread underground, sending fumes of TCE into peoples’ homes, a phenomenon called vapor intrusion.
In June 2018, a local environmental consultant hired by EWA began testing for airborne TCE in Franklin, placing basketball-size metallic cans known as Summa canisters in 14 homes and backyards. A trio of cans sat in each location for 24 hours, and showed that in the air either inside or outside of three homes, TCE levels exceeded Indiana's screening standard of 2.1 micrograms per cubic meter, the threshold that warrants further investigation. In one of the homes, the air was 18 times higher than the screening standard. Soon afterward, Franklin’s mayor commissioned water and soil samples in a neighborhood near the Amphenol site, which revealed high TCE levels near sewer lines.
Now armed with data, If It Was Your Child was able to push the Indiana Department of Environmental Management (IDEM) and the EPA to launch an investigation, which is still ongoing. (The EPA declined to comment for this article, and Amphenol and IDEM did not respond to requests for an interview.) The EPA required Amphenol to collect air and soil samples along two streets near the site. The results showed elevated levels of volatile organic compounds, which can include TCE. Later that summer, the EPA announced that a TCE plume did, in fact, exist, but its boundaries remain unknown. In October 2018, EWA went back to two of the 14 homes, and six new homes, to collect more samples. This time, although the tests did detect TCE, no homes had it in amounts above Indiana’s screening level.
“Our immediate concern is what’s going on in the community that’s exposed to this every single day,” says Rhinehart, who still worries about how much Emma’s sister and brother, 14-year-old twins, have come into contact with TCE. If It Was Your Child wants the federal government to follow through with limits — proposed by the EPA in 2016 — on how businesses can use TCE. Rhinehart and others from Johnson County have traveled twice to Washington, DC, demanding stricter regulations on industrial contaminants and proper oversight of cleanups. That, she says, would “help more than just us.”
In the mid-1970s, in a suburb about 10 miles north of Boston, children began getting leukemia at a rate that was eight times the national average. The town was Woburn, Massachusetts, the site of a cancer cluster associated with TCE; its story was told in Jonathan Harr’s book A Civil Action, which was later made into a film. Between 1969 and 1986, there were 21 cases of childhood leukemia diagnosed in Woburn, including 12 children who died.
Just like in Franklin, a mother of a sick child went into action. Anne Anderson, whose three-year-old son, Jimmy, was diagnosed with leukemia in 1972, founded the nonprofit For a Cleaner Environment. The group marked a map with blue pushpins to indicate the homes of the kids who had died, including Jimmy, who passed away in 1981.
In homes, the water coming out of taps smelled bad and even damaged dishwashers. The EPA identified five companies operating in Woburn that had dumped TCE-contaminated waste that made its way into people’s well water. State officials eventually shut down the contaminated wells, and researchers at the Harvard School of Public Health found a correlation between the water and the leukemia cases. Another study, published 15 years later, suggested a link between prenatal exposure to the contaminated water and an increased risk of leukemia for a growing child.
Another cancer cluster tied to TCE, along with other known and suspected cancer-causing chemicals, appeared in Toms River, New Jersey. There, another mother used pushpins (in red) to mark where children diagnosed with cancer lived. Between 1979 and 1995, 90 children in Dover Township, which includes Toms River, received diagnoses. (The scientific journey that led to these cases being declared a cluster is detailed in the Pulitzer Prize–winning book Toms River by Dan Fagin.)
Yet another TCE-linked cancer cluster emerged at Camp Lejeune in North Carolina. Between 1952 and 1987, up to one million military personnel, family members, and civilian employees at the base drank water laced with industrial solvents, a situation that some consider among the worst cases of water contamination in U.S. history. A 2017 review of the scientific literature on TCE and the specific illnesses suffered by the Marines at Camp Lejeune, now a Superfund site, found that there was sufficient evidence to demonstrate that the solvent caused kidney cancer, non-Hodgkin lymphoma, and cardiac defects. The analysis led the Department of Veterans Affairs to finally agreed to pay benefits to those affected. (This past January, however, US Navy Secretary Richard Spencer denied 4,400 claims totalling $963 billion, saying there was no legal basis for paying them.)
Back in Johnson County, the Indiana State Department of Health has concluded that the local cancer cases do not add up to a cluster, but clusters are notoriously difficult to prove. Investigators (usually a state agency) need to find a greater-than-expected number of cancer cases with a common, definitive cause within a similar group of people in a defined geographic area over a specific period of time. Evidence establishing such connections is often extremely difficult to find.
In Johnson County, “there’s going to be more info on the health side that’s up and coming,” says EWA’s Lisa, referring to how agencies may be able to make that link down the line. “Whether there’s enough data at this point to link contaminants to childhood cancer cases or not is not something we’re working on,” she says. “We’re looking more at unacceptable human exposures and environmental exposures, but what we do know is that TCE isn’t a vitamin.”
In 2016, a few months before the National Institutes of Health listed TCE as a known human carcinogen, Congress passed landmark legislation updating the Toxic Substances Control Act, allowing the EPA to finally move toward restricting the uses of industrial chemicals harmful to human health. TCE was one of ten slated for review.
The EPA proposed banning the solvent in aerosol degreasers and spot cleaners. The Trump administration, however, halted those efforts the following year by changing how the agency was to assess risks posed by the chemicals on the EPA’s new list. The agency would no longer consider, for instance, what TCE might do to those who happen to gulp it down in drinking water or come into contact with it via a spill or improper disposal. As of now, the agency has no plans to restrict TCE in any way. The chemical’s manufacturers, supported by the Halogenated Solvents Industry Alliance, are also trying to discredit the study initially cited by the EPA in making TCE regulations.
Meanwhile, millions of Americans are likely being exposed. A recent analysis conducted by the nonprofit Environmental Working Group showed that 14 million people in the United States are drinking TCE-laced water.
As of 2015, our country was manufacturing or importing more than 170 million pounds of the solvent. More than 400 Superfund sites are contaminated with it. And when TCE enters the environment, it stays a long time and is difficult to remediate, says Sarah Blossom, an assistant professor in the University of Arkansas’s department of pediatrics and microbiology/immunology. Blossom studies TCE and how it may affect immune responses. In her research on TCE’s effect on mice, she found that early exposure often results in persistent effects, such as an elevated risk for developing an autoimmune disorder. “It doesn’t matter how you’re exposed,” says Blossom. Your body will absorb and metabolize TCE, she says, whether you touch, inhale, or drink it.
Testing and Collecting Data
Franklin resident Belinda Velasquez holds up a family portrait in a silver frame. Posed with Belinda and her husband are their three daughters, Athena, now 14, Sophie, 11, and Christy, 9. In the photograph, taken at a prom hosted by the local children’s hospital just after Athena’s 2016 cancer diagnosis, Athena is very thin but smiling. Her weight dropped from 110 to 89 pounds in a matter of months, and soon after the photo was taken, she lost all her hair. After fighting her cancer for nearly two years, Athena is now in remission. Her most recent school picture hangs on the wall. In it she is a happy and healthy-looking teenager.
As Belinda shows more photos, the EWA team takes air samples from her home. “I’m really anxious and nervous about the testing, to be honest,” says Velasquez, “because if something bad comes up, what are we going to do?”
Velasquez and her husband moved here 14 years ago from the South Bronx, in New York City, hoping to raise a family in a cleaner environment with more open space. At 11, Athena learned she had acute lymphoblastic leukemia. Even in remission, she continues to have joint pain. Belinda’s eyes tear up as she mentions how nervous Athena gets whenever she feels a cold coming on, worried that her symptoms actually mean the cancer is back.
To see what may be floating through the Velasquez home, the techs pull air into what look like large syringes. It’s February, an important time to take indoor samples to check for vapor intrusion. Indoor air quality is typically worse in winter because doors and windows are closed. At Belinda’s request, the techs also test Athena’s bedroom, where above the bed hangs a banner that reads “#AthenaStrong.”
The samples from the Velasquez’s home go to a trailer where Mark Kram from Groundswell Technologies assists with the data collection and analysis as part of EWA's hired technical team. He uses a mobile analyzer to test these samples and those taken from 30 other homes that week.
Kram puts the Velasquez samples into the analyzer. A little more than half an hour later, the results show no detection of TCE. Lisa plans to stop by Velasquez’s home to tell Belinda the good news.
Kram’s trailer sits in another Franklin homeowner’s driveway, right at the known edge of the TCE plume. His equipment continuously monitors the air inside the house, allowing Kram and Lisa to see if TCE spikes at any time over the course of 24 hours or longer. The continuous monitoring gives a more accurate look into how the earth might release the toxic vapor into homes under various pressures and weather conditions. “The community deserves the use of the best technology we can buy to bear on the problem,” says Lisa. “There’s no more time to waste here.”
The data the team collect this time around could help direct the EPA and perhaps steer the agency into expanding its investigation into new areas. The nonprofit pays the testing bill — a total of about $30,000 for each round. Neither Lisa nor the organization’s executive director takes a salary. The following day, the team will be collecting soil and water samples from Hurricane Creek, located near the Amphenol site, to test in a lab.
Back in January, the EPA mandated that Amphenol test the air in more homes, but the shutdown of the federal government delayed the work until the agency was up and running again.
Other tests, conducted by environmental consultants hired by the mayor, showed TCE above screening levels at two of Franklin’s elementary schools in March, prompting officials to temporarily close the buildings. At Needham Elementary, where Christy Velasquez is a student, two of ten air samples had elevated TCE levels. At Webb Elementary, three of seven samples exceeded the state’s screening levels. In one air sample, taken in a first-grade classroom, the amount of TCE was 12 times the screening level.
Nothing to Lose
In the almost four years since Rhinehart and Davidson formed If It Was Your Child, 35 more Johnson County kids have gotten sick. With each new diagnosis, the group keeps fighting for answers on whether TCE might have something to do with it. “If we don’t do it, who’s going to?” asks Davidson, whose stepson, Zane, had his last day of treatment in 2017. “We fight for all of our kids, but we’re also fighting for those kids who haven’t been diagnosed yet.”
If It Was Your Child and EWA submitted a letter in January 2019 to the EPA’s Office of Inspector General (OIG), an independently funded group that investigates the agency in order to prevent fraud, waste, and abuse. In the letter, they point out that the Amphenol site is hardly a unique case of the EPA botching its job. Indeed, it isn’t.
The Amphenol site is not designated as a Superfund site but is instead regulated by the Resource Conservation and Recovery Act (RCRA) — a distinction often made in part due to a lower level of contamination and a lack of resources allocated to the Superfund program. (Many RCRA sites, however, are just as dangerous as Superfund sites, says Lisa, and have equally high levels of contamination.) At the sites addressed under RCRA, cleanup efforts don’t receive as much oversight.
No matter the designation, “the end result is supposed to be the same — it’s supposed to protect human health and the environment,” says Doug McClure, an environmental lawyer and University of Michigan professor who has worked on RCRA cases for three decades. “The RCRA regime could be improved, but it should not be condemned.”
One area of improvement would be to provide more oversight so polluted sites don’t go ignored for so long. The country has nearly 4,000 RCRA corrective-action sites, and problems similar to the one in Franklin could occur in any number of them. “The point of the OIG letter is for many other sites like Amphenol to never have to get to this point,” says Lisa.
In response to the January letter, the OIG held a meeting in Franklin earlier this month. This was the first step in its investigation into how the EPA communicated the risks posed by the Amphenol site to the community. The office accepted written comments until May 22 and expects to report on its findings by December.
Meanwhile, the EPA is continuing its own investigation of the Amphenol site, testing more homes and sewers to pinpoint the plume’s boundaries. Right now the agency has more than a dozen more homes on its list to sample, and it has scheduled another community meeting for early June. If necessary, EWA plans to come back to retest homes where it originally found high TCE levels and to release the full findings from its winter testing within weeks. For their part, Rhinehart and Davidson will continue gathering the names of area children diagnosed with cancer and putting them on the map.
That map may never reveal what led to Emma’s brain tumors or the dozens of other pediatric cancer cases in Johnson County, but if dangerous levels of TCE are creeping into homes and schools, If It Was Your Child wants something done about it. “I don’t need to put my neck on the line for this community just for shits and giggles. I’ve paid the price. There’s nothing I gain from this,” says Rhinehart. “I don’t win, no matter what.”
This article was made possible by a grant from the Jonathan and Maxine Marshall Fund for Environmental Journalism.