When Billi Ewing was diagnosed with a brain tumor and the doctor was scheduling surgery, the date he returned with shocked her almost as much as the diagnosis. “Oh no,” she said through tears. “Not September 9, that’s my son’s fifth birthday!”
Like most women and mothers, Billi automatically thought of how this unexpected news would affect everyone else before herself. But she came to realize, this diagnosis, surgery and treatment could not wait until the Thanksgiving or Christmas holidays.
“As disheartened as I was to learn that I had a brain tumor, I never felt like death was on the horizon, she adds. “I never called a family meeting to discuss and prepare a plan on what we would do if I didn’t make it through this. I just knew I needed to have surgery ASAP.” And 12 days later, she did just that.
Previously a school administrator, she started experiencing blurry vision in her right eye back in 2013 and shared this with her optometrist during an annual eye exam. Over the course of several months, she would be referred to and seen by two more specialists. During this time, she noticed her right eye bulging slightly, tearing constantly and realized her vision was worsening.
The second specialist, a highly regarded neuro-ophthalmologist, ordered an MRI as soon as Billi entered the exam room. She received “the call” from her doctor on a Sunday morning as she was getting ready for church. Preparing for the worst, she said “I need Lasik, don’t I?” but he sadly responded, “I wish that was all you had to do.”
She was diagnosed with a benign atypical grade II meningioma, which was growing and entangling her optic nerve. What was estimated to be a six-hour surgery became a more complex 13-hour one as a result of the doctor encountering a blockage from an extra bone that had grown around the tumor site, requiring reconstructive surgery.
Thirty-three radiation treatments followed and then the healing process began. Billi has learned a lot since her diagnosis through involvement in various brain tumor awareness communities, including the American Brain Tumor Association.
“Most people hear brain tumor and think brain cancer, believing it is an automatic death sentence, that all hope is lost. But not all tumors are cancerous or problematic.” She’s adamant about making that distinction when sharing her story with others, recognizing that people’s experiences vary and, in many cases, are more difficult than her own.
“I feel it is my responsibility and privilege to be a voice for the voiceless and help educate people.”
Billi’s first steps – literally – towards raising awareness began upon finding a brochure in her post-op folder about the University of Cincinnati’s “Walk Ahead for a Brain Tumor Cure 5K. “I thought to myself: I am not alone. We have a walk!” In that moment, “Billi’s BElievers – From Tumor to Triumph” was born. Starting out as her team name in 2015, it blossomed into a thriving, compassionate community of believers, locally and beyond. “It’s not just a Facebook page, it’s a movement,” she says.
As a result of the movement, Billi met numerous brain tumor survivors and others who were drawn to her scar and hair loss on the right side of her head. “After several types of these divine encounters, I realized that although more informed than most, my brain tumor acumen really didn’t extend beyond my own personal experience. To truly be a one-stop source for education and training, I recognized the need to continually increase my knowledge.”
After applying for and receiving a survivorship, Billi took her first step in that direction by attending the American Brain Tumor Association 2018 National Patient and Family Conference in Chicago. She says it was a life-changing experience.
Billi is a public speaker, a vocalist, a mother and wife, and someone who helps others deal with the worst news they have ever received. And she does it with compassion, humor and intelligence.
When asked why the name “Billi’s Believers,” she replies: “I had to believe that everything was going to be okay and I was going to come out the other side of this from day one.”
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