For Many, Caregiving Leads to Advocacy

CURE, Spring 2014, Volume 13, Issue 1

Whether it is on the national stage or a local support group, advocacy after caregiving can be a rewarding experience.

Caroline Churchill finished strong after two miles, completing the annual Light the Night Walk through downtown Charlotte, N.C. Later the same evening, she danced to live music with her twin brother. It was a celebration of sorts for 5-year-old Caroline, who had come a long way since her T-cell acute lymphocytic leukemia diagnosis two and a half years before, says her mother, Jessica Churchill.

Caroline was walking with Team Churchill, which her mother had organized to raise funds for the local chapter of the Leukemia & Lymphoma Society. The elder Churchill heard about the walk soon after her daughter’s diagnosis had thrown the family into a “new and different world.” Once Caroline grew older and healthier, she decided to participate. Raising money for research was also important to her because she had had a childhood playmate who’d died from leukemia.

“Survival rates are now good,” she says. “Caroline probably wouldn’t have stood a chance 20 to 30 years ago.”

Churchill asked friends, family and co-workers past and present to pledge or join the team for the November walk. “They knew what my family had been through,” she says. “People wanted to help, and they didn’t know how. This gave them an outlet to help.”

Even with her banking job, 5-year-old twins and a working spouse, she managed to pull together a team of 28 walkers, who brought in around $7,000—plus corporate matching funds. Her action is just one example of the many ways that caregivers step up to become advocates.

In the cancer community, an advocate is “someone who supports a cause or policy regarding cancer,” according to Cancer.Net. Kenneth Mitten, a pediatric oncology social worker at St. Jude Children’s Research Hospital in Memphis, Tenn., views advocacy more broadly. On the job, he witnesses what he calls “everyday advocacy,” selfless acts when one person helps another based on shared understanding or circumstances.

“Social work is built on a base of advocacy, trying to make sure that people going through a struggle have the tools they need,” he says. “The beauty here is we are not the only ones advocating.”

In the “tight little city” that is the St. Jude campus, where families live for weeks or months at a time while children are in treatment, parents run into one another routinely, he explains. As cancer treatment becomes part of their lives, long-timers develop an empathy that compels them to want to give others what they wish they’d had. As a result, St. Jude created a parent mentoring program that pairs newcomers with those who know from experience how to navigate what can be an uneasy journey.

“I spend a lot of time saying to parents who have just arrived, ‘This is the time to be overwhelmed,’” Mitten says. The diagnosis of cancer in a family member, especially in a child, is nothing if not unsettling. He tries to be reassuring, telling people it’s OK to feel overwhelmed and even a bit lost. Eventually, he adds, many people end up giving tours of the hospital and helping others find their way around.

Maureen T. Lilly, executive director of Children’s Cause for Cancer Advocacy, trains a small volunteer army of individuals affected by childhood cancer to advocate in the halls of Congress. Last June, for example, on Childhood Cancer Action Day, an annual event hosted by the Alliance for Childhood Cancer, 150 people from more than 30 states, many of them parents and some who are teen survivors of childhood cancer, paid their own way to Washington, D.C., to learn about lobbying.

After a daylong training session to learn the pros and cons of bills relevant to children’s cancer and tips on being an effective advocate, the troops were armed with talking points and sent out the next day to enlighten their congressional representatives during a long day of appointments on Capitol Hill.

Even everyday advocacy, such as helping others in similar circumstances, can be rewarding for caregivers.

Specifically, their mission in 2013 was to encourage political support for the Caroline Pryce Walker Conquer Childhood Cancer Reauthorization Act in the House and Senate, the Childhood Cancer Survivors’ Quality of Life Act and Patients’ Access to Treatments Act in the House, and to increase funding for the National Cancer Institute to further childhood cancer research. It’s not easy material to grasp, but no one better understands the impact of these issues and can state the message as effectively as the families that live through the cancer experience, Lilly says.

Children’s Cause for Cancer Advocacy must be dogged in its lobbying efforts for federal research dollars because high liability and low patient numbers discourage pharmaceutical companies from investing in such research, she says.

There’s no immediate reward for taking part in a legislative process that moves at a glacial pace, yet these occasional lobbyists “make the sacrifice to come because they know their advocacy makes a difference,” Lilly says. She expects many of them will return this year.

[Blog: Caregiving-turned-advocate Katie Brown offers tips on making the leap]

Erica Madden dabbled in advocacy to honor her mother, who was living with breast cancer. In 2007, she ran a marathon in Jacksonville, Fla., organized by a group called 26.2 with Donna, which devotes 100 percent of the donations to breast cancer research and care. At the time,Madden was the director of communications and marketing for athletics at a North Carolina college, and a small part of her job was to stage “Live Pink” sporting events featuring college players in pink gear to raise awareness, as well as money, for breast cancer organizations. But when one of the baseball coaches agreed to train for Dancing with the Little Pink Stars, a gala for a locally based nonprofit with national reach, Madden found a place to use her talents as a fundraiser and graphic designer for Little Pink Houses of Hope.

In May 2012, Madden volunteered to spend her first Mother’s Day since her mom died by catering to the needs of strangers. Specifically, they were families living with breast cancer who were spending a weeklong retreat at the beach, courtesy of Little Pink Houses of Hope. After watching her own mother soldier through three bouts with cancer, Madden knew well the stress these families face and the importance of giving them a chance to focus solely on celebrating life.

“It was amazing,” Madden says, recalling her week of service. “I can’t put into words what it was like to love people going through that battle.” Mothers who worry that their families won’t have sufficient support watch as meaningful relationships develop among children and among husbands who paddleboard and fish or sail together. It’s all part of the organization’s mission to allow families to create memories and form lasting friendships in an activity-based environment—minus the routines and chores of daily life.

“To be part of that, how can that not make me feel amazing?” says Madden, who, at 34, has found an advocacy role that fits her lifestyle and work schedule. She urges those who have lived the cancer caregiving experience and want to help others to “find a niche” and use their talents in a personally meaningful way.

It was amazing. I can’t put into words what it was like to love people going through that battle.

“I wouldn’t want it to happen again,” she says of her mom’s cancer. “But I put my heart into helping now, even more than before. I’m happy to do what I do.”

In memory of her mom, she plans to run a halfmarathon this year, with other family members joining her in various activities at the Florida event. True to her advocacy mission, she plans to donate money raised to Little Pink Houses of Hope.