Doing Good in Rebecca's Name
10 January 2019 | Melanoma Stories
It was March of 2005 when Christine Garrison’s life changed forever. She received the phone call that no mother ever wants to receive. Her daughter Rebecca’s suspicious mole was, in fact, Stage 3 melanoma.
“It was an earthshattering moment that changed our lives forever,” says Christine.
Christine packed a bag and flew to Miami to be with Rebecca as she underwent surgery. The surgery got clear margins and there were no signs that the melanoma had spread to Rebecca’s lymph nodes. “At this point, we thought we were out of the woods,” recalls Christine.
One month later at Rebecca’s follow-up appointment, however, the oncologist cautioned: There was a 50/50 chance the cancer could come back within the next 5 years. If it came back, the cancer likely would have spread elsewhere and the prognosis wouldn’t be good.
Rebecca was a vibrant and vivacious 27-year-old daughter and young wife. She had traveled the world, caring for foster children in Cambodia, helping establish a center to teach sewing skills to former sex workers, and building wells in Africa. Stateside she had recently launched her own graphic design company specializing in wedding invitations. She was a tour de force. She was happy and her life was full, and she was unwilling to accept inaction.
So, when Rebecca was confronted with the news that the melanoma might return, she did what she had always done: she blazed a trail for herself and charged ahead. Rebecca nabbed the last spot in a National Institutes of Health (NIH) clinical trial. “Rebecca was always as proactive as she could be and always wanted to have a Plan B,” says Christine.
The NIH trial lasted a year. At one of Rebecca’s follow-up appointments, however, they discovered a tumor in her back and she had to withdraw. This started what would become a string of clinical trials. Rebecca next consulted Dr. Jeffrey Weber, then at Moffit Cancer Center in Tampa, FL, who referred her to a University of Virginia (UVA) clinical trial. However, new tumors showed up in the course of that trial forcing Rebecca’s hand, and she had to drop out.
In all of this, however, “Rebecca never let her cancer get her down,” says Christine. “Most of her trials had few side effects and she continued to lead a full life. She never gave up hope.”
Rebecca kept fighting and next up was a clinical trial at Beth Israel Deaconess Medical Center in Boston led at the time by Dr. Michael Atkins. The vemurafenib (Zelboraf®) trial showed promising results. “Within 72 hours the tumors started to melt away,” explains Christine.
Vemurafenib (Zelboraf®) is a type of targeted therapy, focusing on specific molecules within cancer cells and blocking the abnormal molecules’ ability to grow and spread cancer. The treatment reaches parts of the body through the bloodstream and fights cancer cells that have metastasized, or spread, from the original tumor to other areas. The drug shrinks tumors and helps patients with advanced melanoma. Vemurafenib (Zelboraf®) would later go on to receive U.S. Food and Drug Administration (FDA) approval for individuals with advanced stages of melanoma and who test positive for BRAF V600E mutation.
“Rebecca was a firm believer in clinical trials,” says Christine. “She called them her lifeline. She saw clinical trials as a gift for her and for others. She was gratified that doctors could learn from her even if a trial didn’t work for her.”
Rebecca was on the vemurafenib (Zelboraf®) clinical trial for a year and a half. What should have been routine scans showed lesions in her brain. “When she went off this clinical trial, her melanoma spread like wildfire,” says Christine. Rebecca soon developed another tumor in her spine, leaving her in a wheelchair. On November 13, 2011, Rebecca passed away.
“It felt so devastating for Rebecca to be gone. I so wanted to stay connected to her,” explains Christine. And, thus, began the launch of The White Aisle Foundation. “I knew nothing about starting a foundation,” says Christine with a laugh, but just like her fearless daughter, Christine jumped right in.
The Foundation’s name draws on Rebecca’s burgeoning wedding design company and focuses most of its work on supporting young researchers and advancing clinical trials. “The most meaningful thing I could do was do good in her name,” Christine says.
In addition to serving as President of The White Aisle Foundation, Christine is also Vice-President and Chair of the Marketing Committee for the Melanoma Action Coalition and has participated in the Melanoma Research Alliance (MRA) Scientific Retreat—watching the explosion of available treatments and advances in the field of melanoma. “Melanoma has gone from there’s nothing for you to what’s the best treatment regimen for you. That’s miraculous and it’s thanks to clinical trials,” she says.
As she reflects on the journey, Christine says, “Rebecca was proud to do her part to advance the research and I hope she would be proud that we picked up where she left off and are doing our part too…I was scared and naïve when Rebecca was first diagnosed but I know a lot more and am a lot less scared now. Today, I’m hopeful for a cure.”