PRINCE FREDERICK, Md. — Every year, cancer affects millions of people worldwide. For one nonprofit, this number includes the many people who care for, love and support cancer patients who need help and aren’t sure where to turn. Hopeful Hearts, a program within the Cancer Hope Network, launched a brand-new pediatric cancer mentorship program this summer to connect parents of current patients with parents of survivors. Southern Maryland’s own Miranda O’Dell, whose son Rex was diagnosed with leukemia at age 9, is one of those mentors.
Rex is in remission and “is a typical 12-year-old boy,” according to his mother. The family is still dealing with follow-up appointments and recovering from these last few years. O’Dell says that navigating the experience in 2021 with COVID-19 restrictions was isolating and created logistical and emotional challenges. It showed her some of the gaps in support for caregivers despite all the resources for pediatric cancer, both in the nonprofit world and within the hospital. O’Dell was determined to make a difference in some way, to someone.
“I remember being so desperate to talk to another mom and see what they were going through and if it was similar to us,” O’Dell said. Without formal resources in place, she turned to Facebook and online forums to connect with other parents who’d understand what she was going through.
Caregivers and patients often meet with hospital social workers during treatment, who can provide guidance and connect families to different services. But caregivers for kids with cancer are in a particularly challenging situation — not only do they have to consider the treatment outcomes, but they also have to weigh long-term health side effects. Both O’Dell and Beth Blakey, Cancer Hope Network’s executive director and chief operating officer, said people are often just looking for other people who have been there and who can give them all the details, and hash out fears and options the way medical providers and social workers can’t.
Cancer affects so many people, but you can really only understand what it’s like if you’ve been there yourself. O’Dell says finding someone who really “gets it” matters. You can speak frankly and ask every question and share every anxiety without having to explain yourself or medical jargon or the terror you live with every day. They just get it.
In Hopeful Hearts’ program, mentorship can be about getting answers, information or resources they’re looking for. Other times, it’s more about feeling supported and like your needs are being met. According to Blakey, some people call just once, and others call weekly or daily depending on where they are in their journey.
Though the needs of clients vary, Blakey knows one thing for certain: the program helps. Program-wide, they capture info on the level of emotional distress before they speak with a mentor and after. On a scale of 1-10, they see a decrease of 3 to 3.5 points before vs. after talking to a mentor for the first time.
“Knowing you have somebody on the other end of the line makes a big difference,” Blakey said. “It’s a powerful way to support others and for people to find hope.”
O’Dell agreed that mentoring felt like a powerful way to give back to other families and said working as a mentor has been fulfilling and meaningful. She feels prepared to help others based on Hopeful Hearts’ intentional training, a program that builds on empathy and shared experience.
Currently, there are 120 Hopeful Hearts mentors nationwide, including O’Dell. Cancer Hope Network has over 700 mentors, ranging in age from 19 to 92, representing 90 types and subtypes of cancer, as well as caregivers.
“They’re extraordinary people to take a challenge of an experience and turn it around to say, I want to be the support I had or the support I wish I had,” Blakey said. And what’s more, mentors are recognizing the need for caregivers to have access to services on a flexible schedule. Caregivers are also realizing that they deserve care, too, and they have a community to help.
All Hopeful Hearts and Cancer Hope Network mentors must be at least a year out from finishing treatment and will receive training. Hopeful Hearts is a peer mentorship program, rather than a support group or a buddy program, and Blakey says they consider a wide range of factors when matching mentors and mentees, like diagnosis, age, location and goals, to find the right fit.
Visit Hopeful Hearts and Cancer Hope Network to learn more about the programs.
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