When 10-year-old Ty was leaving the Indiana Colts game at the Lucas Oil Stadium on Sunday night, his eyes sparkled as he cheerfully yelled to his mom, “That was the best Colts game ever! I got to do so many cool things and even got to play on the field and be a team captain!”
After arriving at the game with VIP transportation, taking selfies with the Colts players, and enjoying the game from exclusive seats with his entire family, Ty’s level of excitement was not surprising, but certainly not reflective of his feelings over the past couple years. He’s had to endure countless days at the Riley Hospital for Children fighting for his life.
This year, LLS received a three-year grant to fund a new intervention study by Carma Bylund, PhD, University of Florida, and her research team that aims to improve family and healthcare communication among adults who care for a parent with blood cancer. This work builds upon in-depth qualitative research completed by Dr. Bylund and LLS in 2018, which identified unique communication challenges faced by these caregivers. Both research studies were funded by the Carolan Research Institute. We sat down with Dr. Bylund to ask her about her work…
Dr. Carma Bylund (purple shirt) and her research team at the University of Florida.
Q. In 2018, you conducted qualitative interviews by phone with individuals who cared for either a child or parent with blood cancer. What were some interesting findings?
It was interesting that most of the respondents were around the same age – an average age of 43. We uncovered many differences and similarities among the groups. Both spoke about the personal rewards of caregiving, including gaining more perspective, feeling empowered, and developing more compassion. They also shared challenges including the impact of caregiving on their work, career and finances.
Many caregivers reported challenges of finding appropriate information online, and feeling overwhelmed or confused. Caregivers of parents reported calling LLS, but caregivers of children relied more heavily on information from their healthcare team.
Caregivers of children emphasized how their child’s cancer affected their personal well-being and some of the difficulties of interacting with their sick child. It seemed harder for them to discuss and accept the cancer diagnosis and prognosis. Caregivers of parents focused on “role reversal” and the ability to give back to their parents who cared for them. While caregivers of children are already living in the same home, caregivers of parents often had to relocate. The caregivers of parents expressed greater impact on the structure of their lives, and reported conflict with siblings in negotiating caregiver roles.
Q. You plan to conduct an LLS-funded intervention study to uncover ways to improve family and healthcare communication for caregivers of parents. What are your goals?
In the intervention study, caregivers of parents will receive an online training hosted on www.LLS.org. Our goal is to address some of the issues within families when adults care for their parents, including the impact on their family system and conflicts with siblings. We also aim to improve information seeking by enhancing online literacy and focusing on teaching caregivers how to look up information online and speak to the patient’s doctor about it.
Want to learn more about how LLS supports caregivers? Click here!
“Women have the power and when we join together, we can make all the difference.”
With those words, Stephanie McMahon, Chief Brand Officer at WWE, captured the theme of The Leukemia & Lymphoma Society’s (LLS) “Women Curing Cancer” initiative, which brings together philanthropic women to move collectively the needle in cancer cures and access to treatments.
On Wednesday, Stephanie joined LLS’s Chief Medical Officer Dr. Gwen Nichols, and LLS volunteer Julie Guillot, who lost her 9-year-old son to acute myeloid leukemia, in a powerful and personal panel discussion about their commitment to fighting pediatric cancer. They were joined by about 50 philanthropic women at the Four Seasons Hotel in Washington, D.C., to listen to the panel and network over a common goal to drive more research and help for patients with cancer.
In a discussion moderated by Fox Sports anchor Lindsay Czarniak, the women shared their personal stories and desire to change the paradigm of treatment and care for children with cancer.
Stephanie spoke of the collaboration that WWE and their Superstar Roman Reigns have launched with LLS to generate awareness and support for research to find new and better treatments while enhancing support and care for children with cancer. WWE is leveraging its global platforms, including TV broadcasts, live events, WWE Network and digital and social media to support LLS’s Children’s Initiative.
She also spoke of her personal commitment to philanthropy and how her passion for helping children with cancer is aligned with the priorities of LLS, which is why the partnership is so important to her.
Dr. Nichols described The LLS Children’s Initiative, a multifaceted program to increase LLS’s investment in pediatric cancer research grants, expand education and support services for children and families, and launch a global master precision medicine clinical trial in pediatric acute leukemia. She emphasized the urgent need to do more for children and why it’s been such a challenge to develop new therapies for children. Only four cancer drugs have been approved for first use in children over several decades while scores have been approved for adults.
Julie, who is volunteering with LLS to bring in new partners to support The LLS Children’s Initiative, spoke of the devastating loss of her son, Zach, to AML, after brutal rounds of treatment and why she chose to help LLS. She said it would take a significant collaboration and “you need the force of a big organization like LLS to drive forward therapies.”
Earlier in the day, Stephanie, Dr. Nichols, and the two founders of Women Curing Cancer, Evelyn Bata, a clinical counselor, University of Maryland University College professor, and an advocate for women’s and children’s issues, and LLS National Board Member Lynne O’Brien, a policy analyst and government affairs expert, formerly with the White House Cancer Moonshot under Vice President Joe Biden, participated in a morning news segment on FOX5DC.
The women who have joined the “Women Curing Cancer” movement have committed to donating at least $100,000 to support the LLS mission. The group is dedicated to supporting programs like The LLS Children’s Initiative and LLS’s Career Development Program, a grants program supporting blood cancer researchers at a critical juncture early in their careers.
To learn more about Women Curing Cancer, contact Christy.Plunkett@lls.org, director of advancement of the LLS National Capital Chapter.