The Role of a Caregiver Can Extend Far Beyond Cancer Care
- Tracy Ryan was a friend of the late explorer Hamish Harding. When she heard he was aboard the Titan sub that went missing, she did everything she could to help.
- The urge to help came naturally to Ryan, who has been a cancer caregiver for her 10-year-old daughter since she was 8 months old.
- Ryan even started a non-profit called Saving Sophie that’s “dedicated to funding groundbreaking cancer research, spreading advocacy and providing grants for out-of-pocket treatments for cancer.”
- There are many resources out there to turn to if you are caring for a child with cancer. One former caregiver told SurvivorNet taking care of a child with cancer requires "a lot of organizing and a lot of advocating."
When Ryan discovered renowned explorer Hamish Harding was one of the five people aboard the Titan submarine that went missing during a mission to explore the Titanic, she knew she had to try to help. Ryan had been close friends with Harding and his wife since meeting at an event in 2019.
Read MoreSending Help for the Titan Sub Search
After receiving a mass email urging people to ask their local representatives to convince the Coast Guard and the U.S. government to get a submarine called the Magellan involved in the search, Ryan reached out to Congressman Eric Swalwell who responded “within like 60 seconds.” “I had been working behind the scenes for four days to get the Magellan sub there and get their permits approved because they did have the capabilities to dive all the way down to the site,” Ryan explained.Swalwell tried to work with the Air Force, Navy and Coast Guard to get the necessary clearance, but it never went through. The heroic efforts would have been too late, regardless, since it was later revealed that the submarine tragically imploded within hours of its initial descent.
“For two days [Swalwell] was on the phone with these guys trying to get the Magellan deployed,” Ryan said. “And I had been, you know, messaging all this back and forth with Linda [Harding’s wife] the whole time.
“This was really more of an effort for me to try and help the family get answers faster. Because the banging in the water that was happening every 30 minutes was giving them so much hope.”
The Love of a Caregiver
Ryan explained that Harding’s wife was “so thankful” for the help and empathy, despite the devastating outcome.
The empathy of a caregiver can go a really long way during a crisis. Ryan unfortunately had to take on the role of cancer caregiver to her own daughter a decade ago and has since found purpose in advocating for all pediatric cancer patients.
Filling the Role of a Cancer Caregiver
Her daughter, Sophie, has been battling brain cancer since she was just 8 months old.
“On June 23rd, 2013 Sophie was diagnosed with a low-grade brain tumor that luckily has a 90% survival rate, but unluckily has an over 85% recurrence rate,” a bio for Saving Sophie, the non-profit Ryan started, reads. “Even worse, the only option for these tumors was chemotherapy, with few advancements made over the last forty years for kids stricken by ANY form of cancer.”
Ryan is “confident that Sophie will soon be cancer free,” but it will be “the first time in history” her specific type of tumor “has been eradicated.” The non-profit, itself, is “dedicated to funding groundbreaking cancer research, spreading advocacy and providing grants for out-of-pocket treatments for cancer.”
Patrick Dempsey's Advice to Cancer Caregivers: Take Care of Yourself, Too
In other words, Ryan is one of those special souls who’s made it her mission to better the lives of others. Now 10 years old, Sophie is even starting to learn just how selfless her mother truly is.
“She’s been aware of it all,” Ryan said of Sophie learning about her efforts to find the Titan sub. “She’s been very proud of me for trying to help.”
Caring for a Child with Cancer
When your child is diagnosed with cancer, it’s an immense responsibility to ensure they’re getting the best care possible. That being said, know there are resources out there to help. The National Cancer Institute gives the following recommendations for parents navigating their child’s cancer journey”
- "Build strong partnerships." Communicate openly and honestly with your child's care team. Work to build a solid relationship with the people treating your child so you feel confident asking any questions and talking about your child's treatment plan.
- "Take advantage of the many specialists who can help your child." There are many people who can help you and your child after a diagnosis. Don't hesitate to ask for aid from specialists who can help your family understand the disease, learn how it will be treated, and cope with complex emotions.
- "If you get information online, make sure the source is credible." Doing your own research is a great way to advocate for your child’s health, but it's crucial to look for reliable sources such as (but not limited to) the National Cancer Institute, Mayo Clinic, Cleveland Clinic and National Comprehensive Cancer Network, among others. Talk to doctors about the information you’re seeing and don't hesitate to get multiple opinions regarding your child's treatment path.
- "Make sure you understand what your child's health care team tells you." Always ask for clarification if something about your child's diagnosis or treatment is confusing.
- "Keep your child's pediatrician updated." Make sure the cancer care team is sharing updates with your child’s regular pediatrician.
And when things get hard, know you’re not alone. We spoke to photographer Jayne Wexler, for instance, who shared how overwhelming it can sometimes feel when caring for a child with cancer.
"It's really hard to see your child going through this," she told SurvivorNet. "If it can be me, I would take it in a second, you know.
"You just go on autopilot and you do what you have to do."
"I Try To Stay Strong, But Sometimes You Need To Cry": Playing The Role of Cancer Caregiver and Mom
Wexler says parent’s dealing with a child’s cancer diagnosis need to be on top of everything. When her son Justice battled acute lymphocytic leukemia (ALL), she had to do "a lot of organizing and a lot of advocating."
"You need to keep track of what's happening, because there's a lot of components to dealing with cancer," she said. "So, you don't have that much time for yourself.
"I try to stay strong, but then sometimes you just want to go and cry and you need to cry, and it's good to cry. But it's been a roller coaster."
The Impact of a Childhood Cancer Diagnosis on the Whole Family
If you're feeling overwhelmed by your child’s cancer diagnosis, try to reach out for help. Wexler found support from her family and a therapist, but you could also turn to friends, social media, support groups, or perhaps other community organizations.
Additionally, make sure you’re still making time for yourself. It can be hard when you’re so focused on caring for someone you love, but you have to remember that you can’t be the best caregiver you can be unless you’re taking care of yourself, too.
"It is important to have some things that you can do outside of the focus of caring for somebody that you love with cancer," Julie Bulger, manager of patient and family-centered care at Vanderbilt-Ingram Cancer Center, told SurvivorNet.
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