From left, Shepherdstown residents Joshua Armstrong, four-year-old Laurel Armstrong, seven-year-old Lillian Armstrong and Kathryn Armstrong sit together recently for a family portrait. Courtesy photo

SHEPHERDSTOWN — On Feb. 14, two Shepherdstown residents drove to Capitol Hill to join over 200 people from 22 states and Washington, D.C., in participation with the Alliance for Childhood Cancer’s Action Days 2024.

Joshua and Kathryn Armstrong served as spokespeople on behalf of the St. Baldrick’s Foundation — the largest charity funder of childhood cancer research grants and Alliance for Childhood Cancer co-chair — to share their family’s personal experience with childhood cancer and advocate for childhood cancer funding issues.

“My husband was halfway across the world on a training mission [for the West Virginia Army National Guard] when I took Laurel to her primary care provider, for what I thought was growing pains and a rash. That afternoon, I got the call that I never could have imagined getting,” Kathryn said. “They said, ‘Laurel has cancer.’ I remember feeling the world stop.”

Upon her diagnosis with acute lymphoblastic leukemia on Aug. 31, 2022, two-year-old Laurel was referred to WVU Medicine Children’s Hospital’s pediatric oncology/hematology team, with an appointment made to begin chemotherapy treatments the very next day. Kathryn immediately contacted her husband and the Red Cross — the vehicle through which at-home emergencies are verified for deployed military members.

“My company and state leadership were wonderful and coordinated to get me back home quickly,” Joshua said. “Still, by the time I arrived at the hospital, Laurel had already started chemotherapy.”

For two-and-a-half months, Laurel underwent treatments, before finally going into remission on Dec. 15, 2022.

“I watched my daughter change rapidly from a seemingly normal child to being so swollen on steroids she was uncomfortable, irritable and couldn’t get enough to eat. A short time later, the chemo made her unwilling to eat and she became so fragile and emaciated that it broke my heart to look at her poor little body,” Kathryn said. “On top of the toll her treatment took on her body, there were numerous unexpected hospital stays that all seemed to last forever.”

Even though now-four-year-old Laurel has been in remission for over a year, her doctors plan to have her continuing with maintenance chemotherapy treatments through Dec. 2024. And that much-anticipated date may prove to be far from the end of her leukemia-related health challenges.

“Although we are currently in remission, remission does not mean she is cured. She will likely have long-lasting side effects from the treatment that saved her life. Side effects I will have to address later in her life,” Kathryn said. “For now, I can’t bear to tell my four-year-old (who adores babies and plays mommy all the time) that she might never be able to have children of her own. I hate that she constantly asks questions about death and dying, because that was part of her reality. Laurel recently said to me, ‘Mommy, when I die, can I become a star so you can see me?'”

The Armstrongs noted that, statistically, one in five children diagnosed with cancer do not survive. Ninety-five percent of those survivors experience lifelong health consequences from their cancer treatments.

“We have the power to change that in the future. It starts with funding,” Kathryn said, mentioning this was the reason she and Joshua became involved with the St. Baldrick’s Foundation and participated in Action Days 2024.

The couple left Laurel and her seven-year-old sister Lillian with family on Feb. 14, to speak with members of Congress and request bipartisan support for increased funding for medical research through the National Institutes of Health and National Cancer Institute; full funding for federal childhood cancer programs, including the Childhood Cancer Data Initiative and the Childhood Cancer STAR Act; and cosponsorship of the Accelerating Kids’ Access to Care Act.

“For months, I’ve been asking for opportunities to give back to the community that saved Laurel’s life. So, when Action Days was scheduled, Laurel’s oncologist and St. Baldrick’s both invited us to join and share her story. Kathryn and I accepted that invite without hesitation,” Joshua said. “I found Action Day empowering and inspiring. I was surprised that we were able to visit with congressional staff — mostly West Virginians, themselves — who were welcoming, generous with their time and seemed to sincerely care about Laurel and kids like her. In the past, I’ve always seen ‘politics’ as this very distant thing. During Action Day, I finally realized what it means to have elected officials representing us on Capitol Hill. It means we really do have a voice and a productive way to use that voice.”

The Armstrongs both said they felt reassured of support for the Action Days 2024 initiatives from Sen. Shelley Moore Capito (R-WV) and Joe Manchin (D-WV), as well as from U.S. Representative Alex Mooney (R-WV). Specifically, they were pleased to hear them and their staffers agree to support legislation like the Childhood Cancer STAR Act.

“The Childhood Cancer STAR Act is the first comprehensive legislation that addresses the needs of childhood cancer survivors after their treatment. Because of this bill, Laurel will be amongst the first generation to receive a life-long healthcare plan and additional resources to manage the impact of her cancer,” Joshua said. “It’s a huge step forward in treating the unique needs of childhood cancer victims.”

According to the couple, Action Days 2024 was just the beginning of their family’s involvement with the annual event and other childhood cancer-related advocacy and fundraising efforts.

“The legislation we advocated for during Action Days will lead to more effective treatments, less harmful side effects, faster access to better care and more support for the long-term needs of childhood cancer survivors,” Joshua said. “There’s a future where a child like Laurel will not have to go through two-and-a-half years of chemotherapy — which is literally the process of poisoning the child to kill the cancer. There’s a future where a child like Laurel will not face the prospect of life-long health complications as a result of their treatment. And there’s a future where robust support is provided to address all aspects of these diseases’ impact on victims and their families. Unfortunately, that future has not arrived yet. The legislation we proposed to Congress during our visits will help accelerate the arrival of that beautiful future for kids with cancer and their families.”