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Cancer victims' families trying to stay positive

Tahlequah Daily Press - 1/11/2019

Jan. 11--Amid frustrations of lack of information and research, local advocates concerned with pediatric cancer rates are continuing to focus on those in need and raising awareness.

Melissa Jumper and Gary McAlpin are two Cherokee County residents who have turned their losses into opportunities to educate and help others. Both had children who died after being diagnosed and treated for pediatric cancer, and both have been vocal about looking for possible causes and solutions, all while assisting others.

Jumper's son Zayden, who is a triplet, passed away in 2016, and since then, she has begun an annual toy drive for pediatric cancer wards and centers in his memory. She also has spent numerous hours researching the number of cases in Cherokee County and contacting officials with hospitals, tribes, the state, and the area.

Gary McAlpin's son is known as "Warrior Kai" due to his fighting spirit. Kai passed away in 2017, and McAlpin has since formed organizations such as Kai's Warriors Against Childhood Cancer and Sweetwater Foundation.

These parents and those who care for the 45-plus children diagnosed with pediatric cancer in the Cherokee County area over the past couple of years have had ups and downs while looking for answers. To them, reports from the Oklahoma Department of Health were outdated, and some government and tribal officials have been slow to acknowledge the issue.

"Honestly, since the diagnosis of Emma, the latest case, we've grown weary pursuing tests. We've not been taken seriously. It seems we feel defeated. We raise questions now and again, but they are not answered. Cases of new diagnoses are still on the rise. We've had two in the past year," said Jumper.

The Cherokee Nation has been open to talking about pediatric cancer, and has contributed the information it collects through its Cancer Registry. When contacted this week, Julie Hubbard, communications manager, stated in an email that, after checking with Secretary of Natural Resources Sara Hill and Dr. Sohail Khan, principal investigator for the CN Cancer Registry, "the Cherokee Nation doesn't have any updates."

"We continue to monitor our cancer registry data for any spikes in childhood cancer rates, but to date have not seen anything unusual," said Hubbard.

The Cherokee Nation focuses on tribal citizens, but the state of Oklahoma has not put out any recent updates. Its last report included data only through 2014. That's the last year for which the Environmental Protection Agency offers data, too, but the EPA acknowledges there has been an overall rise in the instances of childhood cancer, according to its nationwide "America's Children and the Environment" report, updated in 2017.

"Childhood cancer incidence rates vary by age. In 2012-2014, children under 5 and those ages 15 to 19 years experienced the highest incidence rates of cancer at approximately 218 and 234 cases per million, respectively," states the childhood cancer section of the EPA ACE report. "Cancer in childhood is rare compared with cancer in adulthood, but still causes more deaths than any factor, other than injuries, among children from infancy to age 15 years. The annual incidence of childhood cancer has increased slightly over the last 30 years; however, mortality has declined significantly for many cancers due largely to improvements in treatment."

The EPA Region 6 -- which serves Arkansas, Louisiana, New Mexico, Oklahoma, Texas and 66 tribal nations -- and Cherokee Nation hosted the Tribal Children's Environmental Health Symposium in October 2018, but the topics and outcomes have been difficult to locate.

"Sohail Khan, who oversees the cancer registry, did participate in the EPA Region 6 symposium held in Tulsa, but his presentation was about indoor air quality and the asthma project his office is jointing working on with the University of Tulsa and funded by EPA," said Hubbard.

McAlpin, a Cherokee citizen, said he did not know about the public event until after it was over.

"I'm trying to stay positive and keep tuned in with family and the [Sweetwater] Foundation. It's going well and slowly. We really need a building or space downtown for a headquarters or coffeehouse," said McAlpin.

McAlpin hopes to set up a coffee shop-style center for community members to use. He said he and Jumper are combining their efforts and energies to find a location and some funding. Both continue to help those in need.

"We've redirected our focus to support and outreach to the families affected. We are in need of Walmart gift cards, and gas cards. There are two families that do a lot of travel to treatment, and the cards help offset gas, prescriptions and oil changes," said Jumper. "Gary's Sweetwater Foundation will distribute the cards."

She hopes that in the spring, the group can meet again with officials involved with environmental equality.

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