Each time the Johnson County community learns about a child diagnosed with cancer, people are quick to rally around them.
Yard banners, T-shirts and bracelets implore them to stay strong. Fundraisers and benefits provide financial support when they need it most.
But a group of parents whose children have been impacted by cancer want to find out the root of these terrible diagnoses. They hope the community will be just as supportive of their ongoing efforts and step up to help.
“There are certain things that happen when you have a sick kid, certain awesome things about how the community shows their support, the bracelets and T-shirts and yard signs and fundraisers,” said Kari Rhinehart, a co-founder of the parent group If It Was Your Child. “If those are things you’ve participated in and you believed were worthy causes, this is the point where we need you to do a little more.”
If It Was Your Child has been dedicated to investigating Johnson County’s high number of childhood cancer cases for the past three years. The group will host a community forum Thursday to educate the public about their work and present their findings so far.
Environmental experts working with the organization will discuss testing that has already been done in the county and what those test results mean.
The overarching goal is to continue formulating a plan to get contaminated areas cleaned up.
“We’re not trying to point fingers. We’re just trying to figure it out and clean up the community,” said Stacie Davidson, a co-founder of If It Was Your Child. “People don’t want to take responsibility, but we clearly have an issue.”
If It Was Your Child is a grassroots effort to find out why Johnson County seems to have a rash of childhood cancer cases. According to the National Cancer Institute, Johnson County had one of the highest age-adjusted incidence rates of childhood cancers for people age 19 and younger between 2010 and 2014.
The rate of 22.2 cases per 100,000 people was the sixth most in Indiana and well above the state average of 17.3 cases.
Both Davidson and Rhinehart have had children diagnosed with cancer. They have been relentless in their search for answers in light of the county’s high incidence of childhood cancer.
In 2017, If It Was Your Child announced their partnership with the nonprofit group Trevor’s Trek Foundation. The foundation helped pass nationwide legislation expanding the definition of a cancer cluster and made it easier for state and local officials to get funding to investigate increased incidences of cancer in confined areas.
Through the foundation, local organizers connected with the Edison Wetlands Association. The New Jersey nonprofit organization specializes in toxic waste site cleanups, environmental restoration and conservation of natural resources.
They have been involved in the cleanup of dozens of contaminated sites, including the former site of Chemical Insecticide Corp. in Metuchen, New Jersey, which was infamous for being so polluted that rabbits living in the area had turned green.
Since September 2017, the association has secured more than 20,000 pages of documents focused on Johnson County from the Environmental Protection Agency, Centers for Disease Control and Army Corps of Engineers. The documents are related to sites throughout the county, including Camp Atterbury, the Webb Wellfield and the former site of Amphenol Corp. on Hurricane Road in Franklin.
Staff members pored over the documents, which contained decades’ worth of environmental data, including records of chemicals manufactured and stored by local industries. That information was summarized into five-page summaries released monthly and posted on the Edison Wetlands Association website.
The summaries synthesize the complex technical information in easy-to-understand materials for the public, which is the first step in assisting and empowering the community, said Shannon Lisa, program director for Edison Wetlands Association and author of the summaries.
“By bringing the information out from within the catacombs of government storage rooms and making it accessible and understandable, the community can better participate in the regulatory process,” she said in a statement.
With that information in hand, those involved with If It Was Your Child have been meeting with the association to understand what it means for the county now and moving forward, Rhinehart said.
“We’ve been trying to figure out with Edison Wetlands how all these pieces fell into place, what we need in terms of getting the state and local and federal agencies to move forward with what needs to be done,” she said.
Lisa and other representatives from the Edison Wetlands Association will all be present at Thursday’s forum. Peter deFur, president of consulting firm Environmental Stewardship Concepts, is also slated to speak about the potential consequences of contamination.
All will report on what contamination has been found so far, its effects on our community, home sampling and testing and how the community can move forward to clean these sites up.
“They can explain the science and bring it to people in a way they can really understand it. They help it make sense,” Rhinehart said.
Officials with the Edison Wetlands Association will also be analyzing vapor coming up from the soil on properties in Franklin whose owners have agreed to the tests. The tests will be sent off to a state-certified lab to verify the results.
Families who have agreed to have the tests done will receive the results, though those will not be shared publicly, Rhinehart.
The Edison Wetlands Association is covering the cost of home testing and sampling currently. But the hope is that with test results in hand, local organizers can force movement from the Environmental Protection Agency in cleaning up these sites, Davidson said.
Federal legislation known as Trevor’s Law has made it easier for state and local officials to get funding to clean up contaminated areas. But so far, the government has not recognized the law or made any movement in establishing the details on how communities can take advantage of the benefits, Davidson said.
“If we find something, we’re going to request that the (Environmental Protection Agency) do the next round of testing, or at least get involved,” she said. “It’s more proof on our side.”
If It Was Your Child organizers also hope to recruit more people to come out and help in their efforts. A petition on Change.org has also been started asking the federal government to address these issues, and a letter-writing campaign is being planned.
“We need the community to really come around. If it wasn’t your child who had cancer, it was someone you knew from church or from school or from the soccer team. You know someone,” Rhinehart said. “We need the support from everyone in the community.”
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If It Was Your Child community forum
What: A public presentation regarding chemical contamination found in sites in Johnson County, its effects on our community, home sampling and testing and how to move forward as a community to clean sites up.
Who: If It Was Your Child, a nonprofit group working to bring attention to high rates of childhood cancer in Johnson County. They are working with the Edison Wetlands Association, a nonprofit focused on environmental cleanups, to research contaminated sites in the county, and association representatives will speak as well.
When: 6:30 p.m. Thursday
Where: Compass Park, 690 State St., Franklin
More information: Visit the If It Was Your Child page on Facebook
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