Join NBTS’s campaign to raise awareness about the importance of biomarker testing and clinical trials for patients with brain tumors.
READ MOREPublished on July 20, 2022 in Glioblastoma, Stories, In the Community
The date July 20 holds a different meaning this year for the Hankin family. On a day when Jennifer and Stephanie should be celebrating their parents’ 47th wedding anniversary, the two sisters instead honor their mother’s legacy on Glioblastoma (GBM) Awareness Day.
Cindy passed away from glioblastoma in 2016 at the age of 63. On this GBM Awareness Day, Jennifer and Stephanie remember their mother, who was also an educator, a wife, a daughter, a sister, and a grandmother. An extremely social woman, Cindy made a lasting impression on everyone she met through active involvement in community causes, from her synagogue to the teachers she either worked with or mentored after becoming an administrator.
To her daughters, Cindy was a fun and nurturing mother who grabbed frozen yogurt for dinner with Jennifer during a visit to New York City and was at Stephanie’s bedside to encourage her during the toughest moments of labor.
In April 2016, Cindy’s family noticed she was experiencing an increase in forgetfulness, swapping basic facts about her life, forgetting words, and not always making sense in conversation. An MRI discovered brain tumors. She also started having trouble walking and grasping items in the week before her awake craniotomy, which ultimately led to her diagnosis of glioblastoma.
Following her surgery, complications left Cindy paralyzed on the left side of her body and caused severe aphasia. The family tried to juggle competing priorities — recovery from the surgery that required five weeks in the hospital, alongside the need to start chemo and radiation.
She spent the remaining months of her life in treatment and therapy while living at home with her husband, Ken, and Jennifer, who were her primary caregivers. During that time, Cindy relied on a wheelchair for mobility, and her expressive speech was severely limited. Shortly before Cindy passed away, the Hankin family invited her whole community to sit with her and say goodbye.
Over 100 people came during that time to say farewell — teachers she had mentored throughout her career, synagogue members, friends, and family. “I know she couldn’t have necessarily spoken to them,” Jennifer explained. “But she could hear how much of an impact she made on all these people. It was really special that we could do it before she passed.”
Instead of enjoying retirement with her husband and life as a doting grandmother, Cindy passed away from glioblastoma after a courageous eight-month battle.
GBM is one of the most complex, deadly, and treatment-resistant cancers. The five-year survival rate for GBM patients is only 6.8%, and the median length of survival is only eight months. Survival rates and mortality statistics for GBM have been virtually unchanged for decades.
“This disease is terminal and fast-acting,” Jennifer said. “I have a friend whose grandmother passed away in the 1970s from glioblastoma. There have been a lot of advances in other cancer treatments with significant increases in survivability, but little progress has been made with glioblastoma since then. It’s much more prevalent than people think, but it’s not on the same scale of awareness as other cancers.”
In addition to being life-threatening, GBM and its harsh treatments inflict devastation upon the brain, which controls cognition, mood, behavior, and every function of every organ and body part.
“I didn’t realize how each person’s experience can be so drastically different,” Stephanie shared. “John McCain had his glioblastoma surgery and was back on the Senate floor in less than two weeks. Our mother was completely incapacitated after her surgery. The brain is so complex, and where the cancer is in the brain can affect so much of the person’s functioning. We were so naive. We had rose-colored glasses on, and it never occurred to us that it could be that debilitating that fast.”
Due to the brain tumor or treatment, many glioblastoma patients like Cindy will lose their ability to work, drive, and other functions that contribute to their sense of self and independence. For Cindy’s family, the drastic change in her well-being thrust Jennifer into an unexpected caregiver role.
“Some people live with it for years, and some people it’s only a few months, but either way, it’s taxing on the person with GBM and the caregivers,” Jennifer said. “I know NBTS focuses on research, but they also support caregivers because they recognize how devastating this disease is. You’re experiencing a loss, but you also need to be positive and take care of your loved one who’s sick for an extended time. It’s mentally exhausting. It’s physically exhausting.”
To honor Cindy’s legacy and to change the future for patients and families facing GBM, the Hankin family made a multi-year commitment to establish the Cynthia Hoffman Hankin Glioblastoma Research Fund at the National Brain Tumor Society. Their fund will help to advance brain tumor research at leading institutes across the country to find better treatments and, ultimately, a cure for GBM and other brain cancers.
“My mom used to always quote the saying, ‘To whom much is given, much is expected,’” Jennifer said. “For my dad, sister, and I, we were fortunate to be in a position where we have funds to support causes across different priorities. We want advancements in glioblastoma to be a key part of our family’s philanthropic plan and to feel like our funds are actually able to help move the dial.”
