One Family’s Journey Through Cancer to Capitol Hill
“Children’s cares about the most vulnerable among us, those who often do not have a political voice.”
Liz Lyons, Children’s Director of Advocacy and Government Affairs
It started with dark bruises on then 9-year-old Grace’s legs. An avid ballerina, her mom, Mandy, initially thought they were from dancing. When the bruising spread to her neck and ears, Mandy scheduled an appointment for Grace to see her pediatrician.
Troubling blood work led the Fry family from Lincoln to Children’s Nebraska in Omaha, where the diagnosis was as swift as it was shocking: cancer. Specifically, acute myeloid leukemia – a rare, hard-to-treat childhood cancer that requires aggressive chemotherapy and long-term hospitalization.
It was day one of 143 at Children’s for Grace, her parents, Jeff and Mandy, and her teen siblings, Taylor and Nathan.
Grace – now 11 years old – recalls, “I was in complete shock. I kept thinking, ‘Is this really happening?'”
“Td probably driven by Children’s hundreds of times, and I never thought we’d be inside looking out,” says Mandy.
In addition to the stress of Grace’s medical condition, Jeff and Mandy felt like they were drowning from the financial burden of her lengthy, complicated hospitalization. Mandy took a leave of absence from her job to be with Grace, so they were down to one income. Jeff continued to work, but even with a good job and employer-provided health insurance, it wasn’t enough. Certain medicines and interventions weren’t covered by their high-deductible health coverage. They estimate their hospital stay of nearly five months cost about $4,000 a day, not counting chemotherapy.
“There is no possible way anyone, regardless of income, can afford the cost of having a sick child hospitalized long-term,” says Jeff Fry.
As they grew increasingly overwhelmed, a Children’s social worker offered the Frys resources to help — including one they never thought they would turn to: Medicaid.
“There’s a stigma attached to Medicaid, but it was a lifesaver for us — and that was on top of primary insurance,” Jeff explains. “We never thought we’d need it, until we did.”
“It’s terrifying to think about if we wouldn’t have had Medicaid coverage,” adds Mandy. “Families would be bankrupt without it.”
Medicaid sponsors the health care of nearly 33 million children — many with serious and chronic illnesses.
“There’s a stigma attached to Medicaid, but it was a lifesaver for us.”
Jeey Fry, Father
“Nationally, children make up the largest group enrolled in Medicaid, but only account for 20 percent of the program’s overall cost,” says Liz Lyons, Children’s director of Advocacy and Government Affairs. “As Congress continues to look for opportunities to find savings within Medicaid, they must remember that any cuts will disproportionately impact children.”
With her family and support system by her side, Grace bravely fought through intense treatment. Her optimistic spirit helped her find bright spots during a difficult time.
“We would play games, bake cookies and have fun in the hallways,” she remembers. “There were a lot of ups and downs.”
Today, Grace’s leukemia is in remission. “We’re back to somewhat normal,” Mandy says. “Life will never be normal again.”
Their experience fighting cancer and all of the battles that came with it – physical, mental and financial, to name a few – was exactly why Children’s reached out to the Fry family earlier this year to engage them in a different kind of fight. Lyons asked them to advocate alongside Children’s in Washington, D.C., in October on behalf of other families with medically complex, seriously ill children.
“We don’t like the spotlight, but we felt we could be a voice for other families bearing the heavy burden of illness,” says Mandy. “If you would have told me two years ago, while we were still hospitalized, that we’d be advocating for legislation in D.C. with Children’s, I would have said, “No way.”
This past fall, with representatives from Children’s by their side, the Fry family of five met one-on-one with Senators Deb Fischer and Ben Sasse, both Nebraska Republicans, on Capitol Hill, sharing their story and encouraging them to strengthen legislation to prioritize children’s health care and protect Medicaid.
“I think it helped them put a face and a family behind it,” Jeff says. “I’m hoping they now think of Grace when they’re debating and deciding on legislation.”
“The visits were totally different than I was expecting,” says Mandy. “It was more personal than I thought it would be, and it was easy to get our message across. I was impressed by how relatable they both were, and how much they genuinely seemed interested in Grace and the work Children’s does.”
Lyons adds, “We really felt their compassion toward Grace and her family as they listened to the details of her diagnosis and challenging medical journey. I think they got a better understanding of how significant Medicaid was for this typical Nebraska family in their time of need. They’re often told how Medicaid becomes secondary for medically complex children, but it’s different when that child is sitting next to you in your office.”
“I was very glad and humbled to be able to talk to them,” says Grace.
While in Washington, Children’s also advocated for the Accelerating Care for Exceptional (ACE) Kids Act – a bill designed to find savings to Medicaid for those most reliant on the program by improving care coordination, especially for children traveling across state lines to receive specialty and subspecialty care. Senator Fischer has signed on to be a co-sponsor of the ACE Kids Act, and Lyons is hopeful that it will pass this Congress.
Before their conversations on Capitol Hill, the Fry family took in the popular sights of D.C. – monuments, museums and more. “I loved learning so much about our history,” Grace says.
The trip also taught the family about a part of Children’s mission that they hadn’t been familiar with: “To improve the life of every child – through dedication to exceptional clinical care, research, education and advocacy.” Advocacy that reaches far beyond the corner of 84th and Dodge Streets…
“Everyone we’ve talked to about this effort has been wowed by it,” remarks Mandy. “It’s awesome that Children’s isn’t just thinking about Omaha or Nebraska; they want to make a difference in nationwide policies. It was eye-opening and encouraging to see.”
“Children’s cares about the most vulnerable among us, those who often do not have a political voice,” explains Lyons. “Challenges and cuts to vital programs like Medicaid put the smallest and sickest at risk. As the only safety net provider for children in our state and region, it’s our responsibility to speak up and be a champion for them.”
