By Steve Blanchard - March 12, 2021
While serving in the Air Force as a member of a pararescue unit at Patrick Air Force Base on the east coast of Florida, Sara Davis fully embraced her team’s motto, “That others may live.” It’s the ways she lived her life, according to her father, Rich Pollock, and still defines her more than a year after her death.
Sara passed away in January 2020 after a three-year fight with leptomeningeal cancer, a rare form of cancer that attacks the body’s central nervous system, including the coverings of the brain. But her passing came well after she agreed to participate in varying forms of research that not only helped her own life; it assisted in the treatment of future patients facing the same disease.
“As a family we certainly saw how blessed we were that she was able to have a good quality of life for nearly three years while research continued,” Pollock said. “But on the other side she really felt like she was helping other people and that was a huge thing to Sara and the entire family.”
While undergoing treatment at Moffitt Cancer Center and under the watchful eye of Dr. Peter Forsyth, who chairs the institution’s Department of Neuro-Oncology, Sara allowed the researchers to use her data and cerebrospinal fluid (CSF) from each of her visits. That allowed researchers to find new ways to treat patients with the same rare and little understood cancer that showed very little vulnerabilities.
“In Sara’s case it was likely melanoma that metastasized to the brain and caused leptomeningeal disease,” Forsyth explained. “This is when tumor cells get into the spinal fluid and becomes like a non-infectious meningitis. Tumor cells float around in that fluid and it’s difficult to diagnose and to treat.”
Most people who experience this form of cancer live for a few months. But by putting Sara on radiation treatments and different immunotherapies, Sara lived for three years after her diagnosis and most of that time she enjoyed a good quality of life, according to her father.
“We were told that researchers discovered through blood and CSF tests that Sara’s body produced an extra protein that others in a research group did not,” Pollack said. “I remember the awareness for us of how much better she was doing than everyone else, especially when we learned that Sara was the only patient in the group still alive. We knew – and she knew – that this wasn’t just about Sara.”
Because of that research, Pollock said Sara learned that researchers were taking information from her tests and blood work and learning more about how to treat leptomeningeal disease in other people. Researchers were finally finding ways to treat the illness.
“For her that was uplifting,” Pollock said. “She would talk openly about that in a way that showed how much she cared for other humans. Sara was so level-headed with all of it and she understood that we went through a cancer diagnosis as a family and that other families face the same challenges.”
For Forsyth and the team of researchers at Moffitt, Sara gave them hope.
“For three years Sara gave us hope and we gave her hope because she knew we were trying our best,” Forsyth said. “She really changed my life. This is a disease where people live only a short time after diagnosis and it’s easy to forget about them. We always believed that we could do something about this disease and thanks to her we now have new models and new ways to treat this disease. We have a chance to cure because of her.”
"We always believed that we could do something about this disease and thanks to her we now have new models and new ways to treat this disease. We have a chance to cure because of her."- Dr. Peter Forsyth, chair of Neuro-Oncology
And Sara knew she could directly lead to the discovery of new treatments by simply granting the access needed by doctors and researchers to her particular immune response to leptomeningeal disease.
For most of those three years, Pollock said his daughter lived independently and was able to provide for her young son, Josiah. She even returned to work on the Air Force base, where she openly discussed her treatment plan, the research she was directly involved in and the impact it had on her family.
However, on Christmas Day 2019, Sara found herself back at Moffitt after not feeling well for several days. A spinal draw relieved some of her symptoms but not all of them, so she was kept overnight.
That’s when Pollock and his family knew they were nearing the end.
“Dr. Forsyth pulled me out of the room, and he said, ’Rich, I have a question for you,’” Pollock remembered. “He rarely called me Rich—maybe only one or two times – so I knew this was serious.”
Pollock recalls that Forsyth pointed out that things weren’t going well for Sara and asked if she had considered what would happen to Sara when her fight was over.
“I asked if we could do an autopsy,” Forsyth said. “That’s the ultimate gift. We can only grow cells from patients who permit an autopsy, and we would be the first in the world to grow these cancer cells from a melanoma patient with this disease.”
Forsyth explained that to find better treatments for people with leptomeningeal disease, cells needed to be grown that could be used to test drugs. It takes the guess work out of finding new treatments because it tells doctors exactly what they need to target.
“The words were barely out of the doctor’s mouth before Sara agreed,” Pollock said. “There was no pause and no consideration. It was just, ‘Yes, if you can use my brain to help someone else, then do it.’”
Sara Davis passed on January 24, 2020 at the age of 37. She left behind a son, her father, Rich, her mother, Susan, and two sisters, Jennifer and Laura. But she also left behind valuable information that can help others facing the same diagnosis she faced, according to Forsyth.
Scientists have been able to grow tumor cells in the lab using Sara’s donation and Forsyth believes Moffitt is the first lab in the world to find conditions to grow cells like serous from donated spinal fluid. Those cells will help scientists discover drugs that can treat future patients battling the same disease.
“Sara and patients like her have changed my life in terms of being focused on developing a treatment for patients with leptomeningeal disease,” Forsyth said. “Her courage is allowing us to find a cure.”
Donations like Sara’s, Forsyth added, have inspired the basic research team to further investigate the unique opportunities and challenges of leptomeningeal disease.
While his daughter’s death was difficult, of course, Pollock said he and his family were not disappointed in her treatment or the outcome.
“We had about 10 times as long with Sara as most families who face this disease get,” Pollock said. “How can you be upset by that? I wish she was still here, of course, but we could have been one of the families that only had three to four months. Plus, more than a year after her death, she’s still helping others, which was always her goal and will be her legacy.”