Often, families who become passionate advocates for a particular cause find their way to action through hardship and suffering. That is definitely the case for Henrico mom Cindy Maynard and her son, Jake.
Jake, a 19-year-old freshman at the University of Kentucky, does not remember a time when he has not had problems with his left leg and foot. As a toddler, he rarely walked, had a very thin left leg, and was hesitant to run around like most kids, but it took quite a while to discover why. The family visited doctors in Virginia and North Carolina and tried physical therapy, to no avail. It wasn’t until Jake was four that doctors discovered a tumor in his left foot. It was surgically removed, but returned a year later. After another surgery, biopsies determined it was leiomyosarcoma (a malignant smooth muscle tumor that is extremely rare in children), and that it had encapsulated a good portion of his foot. The family was referred to Memorial Sloan Kettering Cancer Center in New York, where the immediate treatment was a limb-saving procedure – one of the first of its type – that resulted in partial amputation of
Jake’s foot.
Since then, Jake has endured another eighteen surgeries to remove other masses and try to reconstruct his foot as he has grown. He is, thankfully, in remission from cancer, but like two-thirds of pediatric cancer survivors, he experiences significant challenges due to his treatment. He is still getting used to the feel of his reconstructed foot from his last surgery in January – a complex procedure that ameliorated some problems, but created others. Walking is still painful, and complications led him to take a leave of absence from college last semester.
Cindy and Jake knew the challenges of battling pediatric cancer first-hand. In April, they traveled to Washington, D.C., to advocate for the passage of the Childhood Cancer Survivorship, Treatment, Access, and Research (STAR) Act, and learned how many other pediatric cancer survivors struggle with long-lasting challenges and disabilities. The Alliance for Childhood Cancer, a national group that brings together more than twenty-five organizations representing patients, doctors, and researchers, organized two action days on Capitol Hill as a show of strength. On those days, families and professionals representing thirty-seven states participated in advocacy training and then visited their elected representatives.
“It was a really long day, but absolutely worth it,” said Jake. The Alliance staff thoroughly prepared the advocates before their Congressional visits, according to both mother and son. “They were more organized than Congress,” added Jake wryly.
The Childhood Cancer STAR Act is the most comprehensive piece of legislation ever proposed to affect childhood cancer. Because many types of pediatric cancer are extremely rare, doctors outside of major cancer treatment hubs (like Sloan Kettering) do not have much experience in diagnosing or treating these diseases. The Maynards know that not all families have the ability to access expert care at these hubs, as they did, and they worry about outcomes for those children. They believe one of the most exciting ideas in the legislation is the provision that directs the National Cancer Institute to collect biospecimens from childhood cancer patients to allow additional research and sharing of treatment information with doctors throughout the country, so that children can be treated effectively no matter where they live.
Passage of the legislation looks promising: The U.S. Senate passed the bill unanimously this year, and more than 80 percent of the House of Representatives have signed on as sponsors of its version. Two significant challenges remain, however. First, the House bill must be brought to the floor for a vote – which is not a given – and second, funds to implement the bill must be appropriated. Given the number of competing priorities, funding is a serious concern for advocates.
While in D.C. advocating for the legislation, the Maynards were encouraged as they connected with so many other families with similar experiences. Young children in wheelchairs or with prosthetics as a result of their treatment, parents who had lost their children to cancer, and those still going through treatment all participated. “When you’re going through it yourself, it’s easy to see it as only your battle. But this opened my eyes,” said Jake.
It also opened his eyes to other career paths. Jake was considering a journalism major at the University of Kentucky, but he is now open to the possibility of a future in advocacy.
“I’ve never had any interest or passion for politics, but this has made me look again,” he stated. Both mother and son were encouraged by how welcoming the legislators and their staff were and by how the personal stories affected them. They observed how the brief time that legislative staff met with families could be “the defining moment” for that person – allowing him or her to become a champion for children’s cancer legislation.
The Maynard family has a history of raising awareness of pediatric cancer and raising funds for research (in fact, close to half a million dollars to date) through the Maynard Childhood Cancer Foundation. With their visit to Capitol Hill, they have entered a new phase of turning their own struggles into an opportunity to help others.
Before the visit, “[Political advocacy] was intimidating to me, and I didn’t know how to get involved,” said Cindy. “Now, I feel like we’re ready to do more.”
Jake and Cindy plan to continue speaking out in Washington, and they encourage others who are interested in advocating for childhood cancer issues to visit allianceforchildhoodcancer.org to learn more about upcoming opportunities.
