Mitch Ahlschwede started writing letters to Nebraska lawmakers in the fall of 2013. He was frustrated, he recalled, probably even angry.
His young daughter, Leyna, was in treatment for neuroblastoma, a nervous system cancer in young children. She had been diagnosed at 18 months.
He had baked ribbon-shaped cookies, frosted them gold for pediatric cancer awareness and handed them out at work. But he wanted action.
He got it. His note helped spur an effort to put state funding into an initiative targeting pediatric cancer in Nebraska, an effort aided by concern about statistics indicating an elevated incidence of such cancers in the state. The state’s contribution dovetailed with ongoing grassroots efforts by other local families and advocates, as well as those of health systems fighting the disease.
Now more work is underway to better understand the statistics, find new targets and treatments for the disease and improve access to care for patients across the state.
“It was like a lightning-bolt moment when I got that email,” said former State Sen. Danielle Conrad.
Conrad not only recognized Ahlschwede’s name — the two had been classmates at Seward High — she also had a daughter about the same age as Leyna.
Conrad eventually introduced, and the Nebraska Legislature approved, $1.8 million — a dollar for each of the state’s residents — in one-time funding to bolster pediatric cancer research in the state.
A year later, another round of legislation put the funding in the state’s budget, designating a portion to hire pediatric brain cancer specialists to study the disease and care for kids closer to home.
The appropriation continues today. Over four years — since 2015, when funding kicked in — the state’s commitment adds up to $7.2 million.
“I think it’s a very rare opportunity,” said Dr. Don Coulter, director of the Pediatric Cancer Research Group and an associate professor of pediatrics at the University of Nebraska Medical Center. “I don’t know of too many states that are supporting research for their kids like the State of Nebraska.”
To date, it has funded studies examining the incidence of pediatric cancer in the state compared with the national rate. Other studies involve basic research, including how some types of cancer start and spread. Still more are aimed at seeking new targets for treatment, repurposing existing drugs to treat kids’ tumors and developing new therapies.
Matt Prokop, Nebraska grassroots manager for the American Cancer Society Cancer Action Network, said he’s not aware of any other state that is funding pediatric cancer research in the same way.
Two other states do have efforts directed toward childhood cancer, according to the Alliance for Childhood Cancer. How they compare with Nebraska’s wasn’t immediately clear.
“That was a big victory,” Prokop said of efforts to place funding in Nebraska’s budget.
The time was ripe.
Team Jack Foundation
Even before any legislation, parents of kids with cancer had begun taking action, becoming experts on available research and leading fundraising efforts to increase it. Many were frustrated by existing treatments’ long-term side effects and what they saw as a lack of new treatments.
Some formed their own groups, others supported national organizations. Many have continued their efforts, and some new ones have joined in. Today, by one count, about 20 nonprofit groups are involved in pediatric cancer in the state. Some focus primarily on funding research — in Nebraska, at centers in other states or both. Others help families cover the bills that insurance can’t, such as putting gas in vehicles and paying utility bills.
The Team Jack Foundation was one such group. The foundation’s namesake, Jack Hoffman of Atkinson, Nebraska, had been diagnosed with pediatric brain cancer.
Months before the legislation was introduced, then-7-year-old Jack ran a 69-yard touchdown at the Huskers’ spring game. Replayed millions of times on YouTube and featured by ESPN, Jack’s run brought a surge of attention to the childhood cancer cause.
Team Jack pledged to match the funds the Nebraska Legislature had designated for a pediatric brain tumor program. Jack is now 13 and still fighting.
Nebraska’s relatively small, stable population also has created its own form of visibility.
Every September, Gary Peters of Aurora, Nebraska, passes a bucket at a home high school football game to collect donations for the Pediatric Cancer Action Network. He serves as vice president of the group, founded by the Ahlschwede family. Peters and his wife, Shari, lost their athletic 17-year-old son, Jacob, to lymphoma in 2011.
Peters names local children who have gone through treatment and asks attendees to stand when they hear one they know. Most do. Between 100 and 120 children are diagnosed in the state each year, by Coulter’s reckoning. The numbers appear relatively small on their face, but they add up over time, because some remain in treatment for two to three years.
“That really hits home with a lot of people when they look around the bleachers and see everybody in the stands on their feet,” Peters said.
Inside the numbers
And then there were the numbers. When Conrad, the Ahlschwedes and others took their case to the Legislature, Nebraska had the third-highest incidence of pediatric cancer in the country. The ranking sounded alarm bells.
The rankings, however, are based on five-year rolling averages, Coulter said. Pediatric cancer is relatively rare — accounting for less than 1 percent of the cancers diagnosed among all Nebraska residents. Even a few additional cases in a given year can skew the numbers over such a short time period.
So Nebraska researchers took a longer look at the 24 years between 1990 and 2013, the most recent then available. The study was the longest evaluation of the incidence of pediatric cancer in a state.
The researchers compared Nebraska numbers with national data. They found that the incidence of all types of pediatric cancer in Nebraska was slightly higher than the national average over that period, Coulter said, but not enough to be statistically significant.
However, there was an uptick during the last five years of the study. The study also indicated a higher incidence of brain cancer among Nebraska kids. Leukemia usually is the most common.
Coulter said the researchers want to follow such trends as more data become available. The state still is working on newer numbers.
The Nebraska study correlated with a 12-year analysis published this summer by the federal Centers for Disease Control and Prevention. It put Nebraska at No. 7 for childhood cancer. The national study referenced the Nebraska report.
Buffett Cancer Center
The University of Nebraska Medical Center and clinical partner Nebraska Medicine at the time already had launched construction of the $323 million Fred & Pamela Buffett Cancer Center, the most visible sign of their efforts to step up cancer research and treatment.
Dr. Kenneth Cowan, its director, said the facility was designed with space for treating pediatric cancer patients and with a floor devoted to pediatric cancer research.
Every National Cancer Institute-designated cancer center, including Buffett, is required to focus on the cancer concerns in its territory, Cowan said. In Nebraska, that means pediatric cancer, among others.
Said Ahlschwede, a locomotive engineer who lives north of Beatrice, “There were a lot of things happening in 2013 that opened up doors, which may not have been opened up any other time.”
Coulter said the state funding, combined with help from philanthropic groups, has helped consolidate research spread across the university and expand on it.
The research group started with three researchers. About two dozen participating scientists were listed in the latest report to the Legislature in December.
The group now is part of the Child Health Research Institute, a stepped-up collaboration between UNMC and Children’s Hospital & Medical Center in Omaha. Childhood cancer is one of four focus areas for the partners.
Recently, the partners welcomed two new specialists: a pediatric neuro-oncologist who is rounding out a comprehensive team to treat children with brain tumors in Nebraska and a nationally known pediatric oncologist who is developing novel cancer therapies.
Coulter said the research group also continues to seek clues to the cause of the state’s higher incidence of childhood cancer. They have begun looking for possible environmental contributors and are considering looking for genetic factors.
Accessibility of treatment
In the meantime, he said, it’s important to figure out how to care for kids in a sprawling state where specialized treatment is concentrated on the eastern border.
Traveling for treatment places a burden on families. Not only are there extra costs in terms of travel expenses and lost wages, but there also are missed school days and opportunities for kids. And those don’t necessarily end when treatment is finished.
“We cure 80 percent of the kids that we see,” Coulter said. “But 75 percent of those cured children are going to need consistent care for chronic medical problems for the rest of their lives.”
Leyna, now 7 and sporting a gap-toothed smile, had abdominal surgery this summer to repair damage from her treatment. Earlier this fall, she developed an infection in her leg that required hospitalization and IV antibiotics to treat.
Among other checks, Leyna undergoes periodic echocardiograms to make sure potent chemotherapy drugs haven’t harmed her heart. Doctors also check her kidney function annually. She lost one after surgery to remove her tumor.
However, she remains off treatment, in a maintenance pattern until May, when doctors can give her the all-clear.
“We always kind of sit here and hold our breath and wait for the other shoe to drop,” said mom Karri Ahlschwede.
With an eye toward minimizing families’ travel, the researchers also mapped a potential secondary treatment site. They pinpointed Kearney, estimating that more than 90 percent of the state’s pediatric cancer population lived within a two-hour drive of the central Nebraska community or existing pediatric cancer centers in Omaha.
Dr. Richard Azizkhan, Children’s CEO, said the health system probably isn’t in a position to provide complex services, such as radiation or surgery, in a secondary location.
But Children’s has a clinic with six primary care doctors in Kearney and specialists who travel there. The health system can use telemedicine to connect physicians with its doctors in Omaha. Another next step will be to figure out how to support the rest of the state, including areas without health care providers.
Ahlschwede said his hope is that the research program will mean more lives saved, less-painful treatments and fewer Nebraska kids having to travel thousands of miles out of state for treatment.
Reaching those goals, he said, will require maintaining the will to achieve them. Peters, whose son, Jacob, loved sports, said that means keeping the message out there, making sure Nebraskans know it’s important — and why.
Said Karri Ahlschwede, “You kind of try to find something good to come out of the hell and travesty that found your family for some reason ... to find something good to come out of what Jacob went through, what Leyna went through, and find some way to make it beautiful, as ugly as it was.”