Funding for pediatric cancer research lags far behind that for cancers affecting adults, yet the number of children diagnosed with cancer continues to rise in Northwest Indiana.
Many of the chemotherapy treatments given to children are geared for adults and can be toxic to the youngsters, who often are diagnosed as babies or toddlers.
And childhood cancers are the No. 1 disease killer of children — more than asthma, cystic fibrosis, diabetes and pediatric AIDS combined.
That’s the sad irony and the reality for area families whose children battle cancer, says Donna Criner, co-founder and executive director of the Northwest Indiana Cancer Kids Foundation (NICK).
“Northwest Indiana has seen 13 new diagnoses (of cancer in children) since the first of the year. That is the most in a six-month period since the beginning of our foundation in June of 2009.
"In July, we we lost Kiley Smith, 4, of Lowell, and Zachary Plant, 19 months, of Munster. They make nine children who have died in the last 14 months,” Criner said.
NICK is a registered 501-c-3 charity founded by Criner and her daughter, Katie Perschon. That came two years after then 2½-year-old Drew Perschon was diagnosed with a little-known type of childhood brain cancer called neuroblastoma.
The foundation the team started at Criner’s dining room table has grown to provide “enduring hope, support and counsel to families who are affected by pediatric cancer,” Criner said.
NICK provides support to families through partnerships and attentive care, she said.
“We bring families together that have had similar experiences with childhood cancer to foster courage, faith and hope,” Criner said.
The organization also gives financial assistance and directs families to resources.
“We provide items or services a family may need to make their journey easier, anything from a stroller to housecleaning,” Criner said. “We also help our childhood cancer warriors with scholarships for their college educations.”
But, finding a cure for all forms of pediatric cancer remains “the ultimate mission of any cancer foundation,” she said.
Recently, the mothers of three children who succumbed to cancer in the last year traveled to Washington, D.C., with Criner to talk with area U.S. representatives and Indiana’s senators about federal funding of pediatric cancer research by the National Institute of Health.
Three bills are currently before the U.S. Congress: the Carolyn Pryce Walker Conquer Childhood Cancer Reauthorization Act; H.R. 2058, Childhood Cancer Survivors Quality of Life Act; and H.R. 460, Patients Access to Treatment Act.
During the visit to Washington, D.C., the mothers told the heart-wrenching stories of their children’s battles with cancer and their loss “so other families don’t have to go through this nightmare,” Criner said.
Todd and Sara J. Wuenn lost their 14-month-old, Liam Todd Wuenn, on Jan. 4 of this year to cancer caused by a genetic mutation.
“These children have to be conceived, born, fall ill and some die before we know as parents, family members and health care personnel that this is what faced us in the life of these particular children,” Sara Wuenn told the legislators.
“This isn’t something that we could have chosen against nor would any amount of chemotherapy or radiation stopped as we now realize,” she said.
On Aug. 10, 2010, at just 4 months of age, Miranda Skye Jackson, of Valparaiso, was diagnosed with acute myeloid leukemia. After intense chemotherapy and 100 plus days in the hospital, she went into remission for three months.
“On Oct. 30, 2012, my sweet Miranda earned her angel wings surrounded by the ones she loved,” said her mother, Rebecca McCarty. “I urge you to put children first when appropriating funds at budget time.”
Stephanie Shelbourne, of Griffith, went to the nation’s capital to honor her son Alder Bryce Shelbourne, who was diagnosed with a very rare aggressive brain cancer after suffering severe headaches.
The intense cancer treatment and numerous surgeries left Adler unable to walk, chew, suck through a straw or control his bladder, his mother said.
“We brought him home where he was surrounded by family and lots of love and on the night of Sept. 10, 2012, Adler lost his battle to brain cancer,” Stephanie Shelbourne said. “I will continue to fight in his honor with the help of my family and friends.”
In a thank you letter to Sen. Joe Donnelly after the group returned, Criner said, “Although many children’s cancers are not environmental, some are and we are becoming concerned that we may need to begin investigating potential cancer causing hazards that may exist in our area.”
However, the current federal budget sequestration remains a major roadblock to any funding of pediatric cancer research, with the NIH facing major funding cuts for this kind of research, she said.
“Currently our best hope of financing research into a cure for pediatric cancer is St. Baldrick’s Foundation.”