One of the cluster’s victims, Ashley Rose Kisman, 3, died on November 19, 2001, after her family’s insurance company would only approve part of the payment needed to afford her the bone marrow transplant that might have saved her live. News accounts in local papers told of the Kisman’s struggle to fund-raise for their child’s care and, in the end, her death from the cancer.
Jeff still tears up when he speaks of the children lost and the families broken. “It was hard to raise enough for everyone.” He went on to acknowledge that some of the kids might have survived under a reformed healthcare system that provided care for all of Fallon’s kids. “How can we not help kids like mine?”
Stephanie Sands, 21, was Fallon’s first identified cancer cluster diagnosed with ALL, and she also died in 2001. Counting up the deaths of children is horrible enough for the families without handling the loss of financial security in addition.
For the Fallon cancer cluster families, nothing can erase the trauma of their experiences. Dead children cannot be replaced, and broken families often do not heal. But among the lessons learned from the cancer cluster is that having access to healthcare without financial barrier through a single payer – publically funded, privately delivered – healthcare system would at least alleviate the pressure of wondering if a sick child will get the care he or she needs to survive. And in years to come, the survivors may well be barred from having care at all if their cancers are labeled as pre-existing conditions for the purposes of insurance company review – unless the system is reformed.
“It’s so hard to have to miss work and yet you have to be with your child. Even for those of us with insurance coverage, the costs for travel to care – because you could not get the care in Fallon—combined with losses of income take a huge toll on everyone in the family. Many relationships didn’t survive the strain,” Jeff added. He said one of his vivid memories was driving back from Jeremy’s care in California with his wife, Debbie, nearly ready to deliver their second child, Justin. “She should have had the attention and the excitement that a soon-to-be-new-mom wants and needs but we were torn apart by the horror of Jeremy’s illness and what he was going through. We sobbed all the way home.”
The cluster was first identified in 1998-1999 by a registered nurse who saw what she knew was an influx of children diagnosed with cancer. She sounded the alarms and with a growing chorus of concerned community members welcomed the U.S. Center for Disease Control to conduct a series of meetings and the studies that might identify why the cancer was clustered in these children of Fallon.
Why were they seeing case after case of a type of cancer (ALL) that might normally attack one child in 100,000 over a five year period? Was it something in their environment? The water – fuel leaked into the ground water supply? Tungsten? Arsenic? The air? And if so, from where? One of our own military installations? One of the local suppliers to those installations? Fertilizers or pesticides leeched into the water? Chance? A clustered virus?
Or was the problem genetic somehow? Or did the kids become exposed inutero where moms had passed along an ingested carcinogen or had in some other way been exposed to something damaging? The community clamored for answers while at the same time trying not to damage its image and future potential for its residents and its economic well-being. And studies have been engaged to try to answer some of these questions.
A grant that provides more research support and even bottled water for the schools has one more year to run and was secured through citizen advocacy – including Jeff and another cancer patient’s mom – and because they secured help from Senators Harry Reid, Hillary Clinton and the Lance Armstrong Foundation. Other community fundraisers were held over and over again – car washes, bake sales and benefits – to support families suffering under the financial burdens of caretaking and health coverage pressures.
Jeff said, “One of our challenges is that seven of the original 17 children in the cluster have moved away and cannot be found.” And he wonders for them what the future brings for their health and well-being.
Several families continue the search for causes – and Jeff is one of the leaders of the effort. But even that search is problematic in that some town’s people firmly believe that continuing the search labels the community as attached forevermore to the cancer cluster. In small town America, the future prospects for the town will be often be determined on the smallest of turns of history and twists of fate – and a cancer cluster is no small twist.
But the tragedy of the lost children represents an entirely different societal and political pressure for the cancer cluster families and for us all. The cancer cluster seems to have abated; Jeff says that the last case was identified more than 18 months ago.
For Jeff, saving other families from ever facing the pain he felt on that porch seven years ago may not be a certainty. But to the extent that research into the causes could stop even one tike from suffering or spare one life lost, he’ll keep fighting. As for the nurses who visited Fallon, achieving a just healthcare system through single payer reform will continue to be a commitment to all the patients they’ve protected and cared for who were not afforded the basic human right of being cared for when sick.
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