CLYDE, Ohio (WTOL) - The Clyde-Green Springs Childhood Cancer Cluster families continue to fight for a crucial map of cases and for more urgency from the government. So far, 38 children have been affected by the cluster—with 20 more kids added last spring.
WTOL-News 11 has been leading the investigation into the Cancer Cluster and the agencies involved.
Kole Keller was just four years old when he was diagnosed with a brain tumor. Steve Keller, his grandfather, is opening up about his grandson’s brave cancer fight and loss two days after his sixth birthday.
One of the reasons Keller wanted to research the Cancer Cluster is because he says Kole was his superhero for other kids battling cancer.
There was a time when doctors at Saint Jude's Hospital in Tennessee treated Kole. Steve recalls one day at a Memphis church. “The pastor says, ‘what do you need?’ Kole says, ‘I want you to pray for all the kids at St. Jude's Hospital.’ He was a loving kid. He didn't just care about himself, he cared about others.”
“We need to do this to help future kids out. We need to find out what's going on,” said Steve Keller.
For the past few months, family members of kids involved with the Clyde-Green Springs Cancer Study have been asking the Ohio Department of Health for the department's completed, detailed map showing where the cancer victims have lived.
The families say the map could help them research where water sources and industrial sites are located in relation to the victims.
However, the Ohio Department of Health said it couldn't release that information because of patient privacy issues. Both the families and WTOL asked if a waiver form could be signed by those who want the information released. The state said it would look into it.
Steve said he would sign a waiver.
Warren Brown, whose daughter died of cancer, says everybody knows where his family lives and they haven’t been bothered or had anyone bother them.
“It just seems like they make it too hard. It's a lot of work to find out information that we should already have,” said Dave Hisey, a father with two children in the cancer study.
About five weeks later, the Sandusky Health Department where the Ohio Department of Health and Ohio EPA held a closed-door meeting with the families.
After two hours, the Ohio Department of Health’s Chief of Comprehensive Cancer Control Robert Indian says, “one of the decisions we made tonight is that we can produce a map that doesn't require people to sign a waiver.”
WTOL-News 11 asked if the map had already been completed, why it wasn’t released more quickly.
“So far it's been limited to the original 18 folks. We have not included those folks in Fremont yet. We haven't talked to them. We don't know how long they've been there. The folks in Ottawa County haven't been contacted yet, so there's a lot of groundwork to lay,” said Indian.
On May 29, 2009 Robert Indian held a meeting describing a bigger circle -- a larger area to be included in this study.
Five-and-a-half months later, the Ohio Department of Health hasn't contacted those additional families. Indian admits “some folks, they don't have an initial letter from us yet.”
Family members say it's not the first time a government agency has let them down. They say this lack of effort mirrors when WTOL-News 11 exposed the Ohio EPA for going seven months without performing extra testing as promised last year. After the report aired last Fall, the Ohio EPA director announced the Clyde-Green Springs Childhood Cancer Cluster was its number one priority.
During this month's meeting, families received a report detailing what the agencies have done: looking at industries and dumpsites and collecting water, sediment and air samples.
While family members appreciate the information, but “it doesn't give me much hope of them ever finding what caused the cancer,” said Trina Donnersbach, whose daughter died from cancer.
Hope doesn't look good at the federal level either. WTOL-News 11 staffers poured over thousands of house bills and resolutions from this year. In those documents, representatives spent much more time and tax dollars deciding who should be on the next stamp, recognizing golfers, country music month and even declaring a resolution for something called Complaint-Free Wednesday.
Steve Keller says the government’s action doesn’t make sense. The cancer cluster has been so baffling he met Erin Brockovich in 2006 and told her his story. Since then, she’s put him in touch with some people folks, but he says it’s a slow process there, too.
On the wall of Steve Keller’s home hangs a saying: when someone you love becomes a memory, the memory becomes a treasure.
Keller continues to fight for his treasured grandson, so his passing is not in vain. “I think he would be proud of us looking into it… I think he wants to help other kids,” he said.
The families involved with the study want to help other children as well. Warren and Wendy Brown from Clyde who lost their daughter Alexa in August to cancer are in Washington D.C. right now. They’ll be canvassing the Hill encouraging representatives and senators to provide more focus and federal funding for childhood cancer research.
WTOL-News 11’s Jonathan Walsh will be with the families and will keep folks informed about what happens.