Every time they hear about another child who has been diagnosed with cancer, members of the nonprofit group If It Was Your Child shudder.
They know the pain, the heartache and the hellish depths that treating that cancer will entail. The founders of the group are all parents whose children have been diagnosed with different forms of the disease.
Some have experienced the ultimate loss — having a child die from cancer.
If It Was Your Child has emerged as a grassroots effort to find out why Johnson County seems to have a rash of childhood cancer cases. Two years of planning and asking questions has built momentum as members continue the search for answers.
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The nonprofit group has been pleading with local, state and federal officials to bring attention to the cause, said Kari Rhinehart, a founder of the group. Money is being raised to test groundwater, soil and air in Franklin.
In the past month, the organization also has partnered with consumer advocate and environmental activist Erin Brockovich to take part in her community health surveys to gather more data about health issues in Johnson County.
“We’ve been trying to get as much information from people in the city and the county. The more information we have, the better,” said Stacie Davidson, one of the founders of If It Was Your Child. “It helps us narrow it down to where we really need to focus our attention.”
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 sixth most in Indiana and well above the state average of 17.3 cases.
Throughout Johnson County, the community has rallied around the children who have been diagnosed. Evan Meade of Franklin was diagnosed with acute myeloid leukemia in 2010. Chase Smith, a Trafalgar teen, has been diagnosed with Ewing sarcoma twice.
Cooper Davis of Greenwood only recently finished up a two-year ordeal to cure acute lymphoblastic leukemia.
Both Davidson and Rhinehart have had children diagnosed with cancer. Emma Grace Findley, was diagnosed with an extremely rare brain tumor in 2014. She died three months later.
The same year, Zane Davidson was diagnosed with acute lymphoblastic leukemia as a 10-year-old. His treatment just finished in late September, when his cancer was found to be in remission.
They have been relentless in their search for answers in light of the county’s high incidence of childhood cancer.
In early October, Davidson and Rhinehart were invited to Washington D.C. by the Environmental Defense Fund, one of the world’s largest environmental organizations. The trip was planned to coincide with the Senate confirmation hearing for Michael Dourson, President Trump’s nominee for the director of the Environmental Protection Agency’s Office of Chemical Safety and Pollution Prevention.
The Environmental Defense Fund was opposing Dourson’s nomination because he has extensive ties to the chemical industry and has a history of failing to address conflicts of interest, according to Richard Denison, lead senior scientist for the organization.
Rhinehart and Davidson were two of the numerous families from throughout the country flown in by fund organizers to show the opposition to Dourson.
“We were the faces of communities, so you could see people who have been affected by chemical contaminants,” Davidson said.
For the two days that they were in Washington D.C., the two met with the senior staffs of more than a dozen senators. They were featured in a news conference with Sen. Tom Udall, a Democrat from New Mexico who is leading the opposition to Dourson.
They met with Indiana’s Sen. Joe Donnelly and Sen. Todd Young, and attended the hearing for Dourson’s confirmation.
Working with leaders looking at this issue nationwide, they hoped to make an impact that will not only benefit Johnson County, but people across the country.
“We’re trying so hard to change here. But if we can make a change on the federal level, and meet in the middle, it’s a win-win for everybody,” Davidson said.
In June, 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.
The foundation was going to work to help Johnson County become the first community to benefit from what has become known as Trevor’s Law. But a federal coordinator to oversee the improvements Trevor’s Law creates has not been appointed, meaning that communities cannot yet take advantage of the benefits.
“One of the staffers we spoke with in Washington said that they understand, that the Army Corps of Engineers doesn’t have a director yet either and new bridges can’t get built,” Rhinehart said. “That’s bad, but I’m not talking about bridges; I’m talking about kids dying. So name us a coordinator.”
Following the announcement in June, If It Was Your Child leaders were approached by various environmental groups willing to do additional testing of water and soil in Franklin.
Because those tests are expensive — starting at $50,000 — and state and federal funding is not yet available, If It Was Your Child has been working on funding the testing themselves.
“We’re in this cycle where anything we want to do, we have to do privately,” Rhinehart said.
Besides receiving help from Trevor’s Trek Foundation and the Environmental Defense Fund, If It Was Your Child has also been contacted by Brockovich, one of the country’s most famous activists.
On Brockovich’s website, Community Healthbook, a Johnson County survey has been added for people to take. It is the only survey narrowed to a specific community.
Davidson and Rhinehart spent 45 minutes on a conference call with Brockovich during their trip to Washington, discussing the issues that were impacting the county.
“She had heard about our situation secondhand from the people at Trevor’s Trek, but the more information that we’ve been able to uncover and share, the more she hears about our county, the more concerned she becomes,” Rhinehart said.
The questionnaire is not just focused on cancer, but is aimed at people who have suffered a wide variety of maladies: autoimmune disorders, miscarriage, birth defects, asthma and other health concerns. The survey also asks people to share details if they remember a time when their water had an unusual smell or color, Davidson said.
Already, numerous local residents have answered the questionnaires online, and If It Was Your Child officials are trying to spread the word to get more people to take part.
Local organizers plan to keep in close contact with Brockovich and her camp to see what steps can be taken next, Davidson said.
In the meantime, fundraising will continue to pay for private testing of soil and water.
The end result will hopefully be the cleanup of the Webb wellfield on the east side of Franklin, where contamination was found in the soil. The Indiana Department of Environmental Management is currently managing cleanup of that site.
The concern of those in If It Was Your Child is that contaminants from the area’s past industrial use remain in the soil and water, Davidson said.
If, under the expanded definitions in Trevor’s Law, Johnson County is found to include cancer clusters, it will expedite the funding process for the cleanup.
“Air testing, water testing, soil testing, all of these types of testing we want to do, it’s expensive, and we want to do it three or four times,” Davidson said.
If It Was Your Child
What: A nonprofit group working to bring attention to high rates of childhood cancer in Johnson County and raising money to investigate environmental factors that may have led to it.
Who: The group was founded by local parents whose children have been diagnosed with cancer.
How to help their effort: The organization has partnered with environmental activist and consumer advocate Erin Brockovich to offer a survey asking about health issues in Johnson County.
The survey will help gather information about health factors in the county.
If It Was Your Child is asking that any residents who have been impacted by issues such as cancer, autoimmune disorders, unusual skin problems or asthma, among other conditions, fill out the survey. They are also hoping to find out who has had problems with unusual looking, tasting or smelling water, and whether people are on city water or a private well.
To take part in the survey, go to Brockovich’s website at communityhealthbook.com. After registering, people can choose a survey specific to Johnson County water reporting.