Childhood cancer is rare in Nebraska but, that said, children in the state have a higher rate of cancer than those in the nation as a whole.
Nebraska is the only state outside of five northeast states and the District of Columbia with an annual incidence of between 18.2 to 24.6 cases per 100,000 population, according to 2010 calculations.
Nebraska's childhood cancer rate was 18.6 at that time, the fifth highest among the states for children and youth younger than 20. It was third highest for children 15 and younger.
At the same time, the death rate from childhood cancers is slightly lower in Nebraska than in the nation as a whole.
Within the state, there are hot spots of the disease, counties where the incidence is higher than should be expected. In the years 2008 to 2012, 10 counties had two to four cases per 1,000 children, compared with one or fewer in the rest of the state. Those counties were Boyd, Pierce, Garfield, Nance, Howard, Hamilton, Gosper, Furnas, Red Willow and Johnson counties.
Many of the counties in the western half of the state have the lowest incidence; it is slightly higher in eastern Nebraska. Lancaster County has one to 1.9 cases per 1,000 population.
Leyna Ahlschwede, daughter of Mitchell and Karri Shiers Ahlschwede of Lincoln, was diagnosed in February 2013 with stage 4 high-risk neuroblastoma, a cancer that develops from immature nerve cells found in several areas of the body. In late May, after 15 months of treatment, tests showed she had no evidence of disease.
Still, the disease has turned the family's life upside down, her mother said, as it does other families in similar circumstances.
The Ahlschwedes, to raise awareness of childhood cancer, blanketed state senators last year with emails informing them about pediatric cancer. Lincoln Sen. Danielle Conrad stepped forward with a bill to appropriate $1.8 million for pediatric cancer research at the University of Nebraska Medical Center.
The idea, Conrad said when she introduced the bill (LB764), was to pitch in about $1 per Nebraskan toward the cause.
Leyna learned to walk pulling chemotherapy tubes and pumps behind her. Her vocabulary expanded to include ouch, pain, hurt and no thank you, her mother testified at a hearing on the bill in February. But Leyna is, so far, one of the fortunate ones. And she has been able to receive her treatment, including a stem cell transplant and radiation, at the University of Nebraska Medical Center.
Dr. Don Coulter, pediatric cancer specialist at UNMC, said the $1.8 million allocated by the bill will be used to establish a research center to look into causes of and new medicines and treatments for childhood cancers.
"The $1.8 million is going to help us to recruit scientists to do that for us," Coulter said. "It's going to help us to establish the laboratory space and the laboratory equipment that we need for that. And it's going to help us to build the infrastructure that can sustain that type of endeavor."
That, said Mitchell Ahlschwede, gives him hope that children with neuroblastoma, and his daughter if she would ever need it, would have access someday to newer, innovative therapies or trial treatments.
Coulter spoke to the Legislature's Planning Committee last week about other ways the Legislature could get involved in enhancing the care kids in the state receive.
Eighty percent of children with cancer have a five-year average survival rate, so it is important to help those families through the disease process, he said. While a lot of the kids survive, the disease can have profound and long-term effects from multiple therapies: chemotherapy, radiation, surgery, bone marrow transplant.
Treatments can affect their learning and behaviors and, later, their ability to get a job and be in stable relationships.
Nebraska is one of three states with one focused location for treatment, with one group of nine doctors in Omaha. That's a good thing in terms of expertise and team treatment of cases, Coulter said, but a challenge for families who live scattered throughout the state.
More resources could help, such as education for pediatricians in rural areas, early intervention programs, or assistance for families as they plow their way through their children's chronic diseases.
"I think those are places where we can make huge impacts for these families and help be a model for other states," Coulter said. "We really don't have a whole lot of programs that address that."
Mitchell Ahlschwede said it has been a long road for his family.
"Some days we've been in the fight-survival sustaining mode so hard that sometimes, now, we have all this extra energy and we don't even know what to do with it," he said.
They created a nonprofit Pediatric Cancer Action Network to work for funding for research to benefit kids now and in the future. This week they posted on the site's Facebook page:
"Getting our Legislature to pass $1.8 million for the pediatric cancer research center at UNMC was a good start, but we're not finished yet."