Parents search for answers in cancer diagnoses in Johnson County

FRANKLIN, Ind.--Kari Rhinehart wears a necklace with her daughter's picture etched into it, Emma Grace Findley.

It's a symbol that Emma Grace is guiding her through each step of her new fight to find answers about her cancer diagnosis, and those of other children across Johnson County. The latest effort includes testing for contaminants in more than a dozen homes in Franklin.

"How do I not put up this fight when she fought this hard?" Rhinehart said.

Emma Grace was diagnosed with a rare, cancerous brain tumor at age 13 after a routine eye examination. She died less than four months later.

"It was inoperable and it's one of those tumors, one, you never see in kids ever, and two, it is devastating in adults and children," Rhinehart said.

She and Stacie Davidson, whose stepson, Zane Davidson, was diagnosed with acute lymphoblastic leukemia and underwent more than three years of treatment before going into remission, started the group "If It Was Your Child" after seeing more pediatric cancer cases in their community.

"After he was diagnosed with it, in 16 months, nine more children in Johnson County were diagnosed," Davidson said. "Every time a kid gets diagnosed our hearts just break, our stomachs sink."

The Indiana State Department of Health writes:

"ISDH thoroughly investigates all suspected cancer cluster concerns reported by the public, and all investigations are done in collaboration with the relevant local health department. ISDH did investigate concerns about pediatric cancers in Johnson County and found no evidence of a cancer cluster. As part of that investigation, we identified a total of 123 cases of cancer in people under age 20 between 2001 and 2015 in Johnson County. It's important to note that this number represents all cancer types and was within the number of cases that would typically be expected for that time frame."

But that's not enough for Rhinehart and Davidson. They helped advocate for Trevor's Law, which affects the way cancer clusters are designated and requires that HHS provide assistance to state and local health departments. It took effect in June 2016.

On its website, ISDH states:

"ISDH’s current guidelines for responding to inquiries related to suspected cancer clusters align with the 2013 guidelines from the CDC and the Council of State and Territorial Epidemiologists. These guidelines have not changed since the passage of Trevor’s Law. The ISDH will continue to monitor for new guidance or changes in resources provided by federal partners."

"Under Trevor's Law, we do absolutely have a cancer cluster here in Johnson County," Davidson said.

The Johnson County Health Department said there is no cancer cluster.

But it's just one part of the parents' efforts. They've spent countless hours visiting with legislators, researching, raising awareness and now, testing. They want to know if contaminants from a Superfund site in Johnson County and other spaces they believe to be contaminated are affecting homes. Both Emma and Zane grew up within miles of the site, the women said.

"Our ultimate goal is to get the EPA to re-evaluate Webb Wellfield because right now it's a non-priority list Superfund," Rhinehart said.

They're consulting with a nonprofit organization called the Edison Wetlands Association, which works in toxic waste site cleanup and environmental restoration.

"One thing that was never investigated up to this point was to see if that groundwater had migrated underneath the homes and could be potentially impacting the indoor air of those homes," said Shannon Lisa, a program director for EWA.

The organization said it's spent the past year poring through more than 30,000 documents obtained through FOIA requests and is now doing vapor intrusion sampling to test 14 homes. A petition to the EPA on the testing has already garnered more than 8,000 signatures.

"We're looking for site specific contaminants for a few of the local contaminated sites in Johnson County," Lisa said.

While they wait for data to come back, they shared information with the community Thursday night. Residents and other families affected by cancer attended the meeting, including Angie Brennan.

Brennan said her daughter, Karley, was diagnosed with cancer in 2008 when she was 8 years old.  But Brennan said they learned that a child who lived in the same apartment unit as them prior to them passed away from cancer. Karley has been cancer free since 2012.

"Answers. I want answers to find out, is there something causing this? What can we do?" Brennan said.

Rhinehart and Davidson are looking for answers, too.

Davidson recalls a closet full of t-shirts from fundraisers for other children. Those kids--and their own--are helping them move forward.

"She'd tell me keep going, keep going," Rhinehart said of Emma.