How to help
Donations to help Madison Williams and her family can be made on GoFundMe at www.gofundme.com/fund4maddie. Holly Dempsey, mother of Madison’s boyfriend Sam, set it up in her behalf.
Wes and Jennifer Williams have something extra to be thankful for this year. Their daughter Madison will celebrate her 17th birthday on Thanksgiving Day.
It is a major milestone for the Flowery Branch girl who beat an extremely rare form of cancer.
A PARENT’S WORST NIGHTMARE
Eight months ago, on the morning of March 19, Wes Williams got a call no parent is ever prepared to receive.
His daughter, Madison, was in the emergency room of the Northeast Georgia Medical Center in Braselton. She spoke clearly and plainly, revealing news that would change her life.
“Daddy, I have a brain tumor,” Madison said.
That morning, the 16-year-old had woken up before 5 a.m. with a splitting headache. Madison had been complaining of a headache constantly for three weeks, but her parents were not worried. Teenage girls have headaches from hormones and stress, they said. Plus the flu was making the rounds.
But when Madison began vomiting, Jennifer started to worry. The trained physical therapist and clinical director at Lanier Therapy in Motion recognized her daughter’s symptoms from her neurology training.
“I didn’t want to seem like I was overreacting, but I took her to the ER because I wanted a CAT scan,” Jennifer said. “I wanted to know that she didn’t have a brain tumor, which seemed ridiculous (at the time). Why would she have a brain tumor?”
By the time Jennifer arrived at the hospital, a less than 8-mile drive from her Flowery Branch home, Madison had lost feeling on the right side of her body. The Johnson High School student couldn’t put weight on her right leg and had to be wheeled into the ER.
A CAT scan confirmed Jennifer’s worst nightmare. Madison had a tumor a centimeter and a half long close to the skull on the left side of her brain.
Doctors jumped into action, and Madison was airlifted to Children’s Healthcare of Atlanta at Scottish Rite Hospital. She underwent surgery to remove the tumor three days later on March 22.
Biopsies showed the tumor was a rare form of cancer called anaplastic ependymoma, the most severe grade of ependymoma. It affects the ependymal cells that line the brain and spinal cord. Ependymoma is not genetic and has no known cause, according to the American Brain Tumor Association.
Despite removing the tumor, Madison still needed additional treatment to fight the cancer. The high school sophomore spent seven weeks undergoing radiation treatments five days a week at the University of Texas MD Anderson Cancer Center in Houston.
Through it all, doctors and nurses were amazed at Madison’s level-headed attitude. Never one to lose her cool, Madison said she was more focused on what she needed to do to get through it rather than worry about the possible outcome.
“I don’t ever remember being scared,” Madison said. “I never really wanted to cry, and I never really got sad. It was just the frustration of, ‘OK. I’m trying really hard and I still feel terrible.’”
THE POWER OF SONG
Her grueling treatment required Madison to be strapped to a table with a mask secured over her face for each half-hour radiation session. But she found a way to stay positive. She turned to music.
Her love of music started at age 5 when she and her older brother Bradley, a freshman at University of North Georgia, began taking piano lessons. Guitar lessons followed and Madison began composing music. In fact, she performed an original song for her fifth-grade piano recital.
An avid fan of The Beatles and John Mayer, Madison has been writing song lyrics since the sixth grade.
That talent came in handy. She wrote a song while undergoing treatment in Houston.
Originally titled “Superman,” it describes the pressure that accompanied the outpouring of support she received.
The song’s lyrics include the line, “you made me your Superman, I’ll live up to that if I can.”
“When she felt really bad, when she was sick and tired of feeling sick and tired, she felt a personal obligation to maintain that Superman that everybody saw,” Jennifer said. “We kept telling her, everyone keeps telling you how strong you are … but it’s OK not to be.”
Madison named the song “Leisa,” after Leisa Gorringe, one of the paramedics who treated her on the helicopter ride from Braselton to Atlanta. She kept in contact with Gorringe and Julie Vitoria, another paramedic, along with many of the nurses and doctors who cared for her.
HANDLING THE AFTERSHOCKS
After completing treatment, Madison returned home in June and went back to school in August. A crescent-shaped scar running horizontally across her skull and a small bald patch on the top left side of her head are the remaining physical markers of her battle.
Doctors said there is a 70 percent chance Madison’s cancer will not come back, but that 30 percent keeps the family from breathing a sigh of relief.
Jennifer said the danger with ependymoma is it can return 10 to 15 years later. If it does, Madison’s treatment options would be limited.
Madison also has an MRI every three months for the next two years. And she will have MRIs and testing for the rest of her life.
In the meantime, Madison continues to struggle with side effects of the radiation. Headaches, dizziness and nausea are daily occurrences. Because of her vertigo and lack of depth perception, she can no longer drive.
She also gets fatigued easily, sometimes struggling to crawl out of bed the day after an active day.
Doctors told Madison she could expect the side effects to last at least a year. She is seeing a neuropsychologist and hopes to improve over time.
Another drawback to her fatigue is the multi-talented athlete can no longer play sports. She lettered in track and competition cheer and participated in cross country and golf. But she practices yoga to keep her strength up.
To manage her condition, Madison attends school for half a day. That schedule will continue this year and next, but she still will graduate on time with the class of 2018.
UKNIGHTED WE STAND
During and after her treatment, Madison said the support of her friends and classmates at Johnson High School kept her positive.
“We were just so overwhelmed this entire time with this community and how much they supported her and how positive they were,” Jennifer said.
Classmates and community members reached out in myriad ways. Madison received prayer shawls from church groups, letters and gifts from other patients of MD Anderson and cards from friends and strangers across the country who heard about her story online. While she was hospitalized, the entire Johnson High student body signed a banner for her.
The family sold more than 800 T-shirts saying “UKnighted against brain cancer/Because gray matters for Maddie” featuring the Johnson High Knights logo.
Students participated in a Relay for Life walk for Madison, sold bracelets and conducted a pageant to raise funds to pay for Madison’s medical bills.
Madison’s great-aunt Melissa Stewart, a math consultant for Hall County Schools, organized a balloon release at Johnson on May 2, which is Ependymoma Awareness Day.
Stewart said Madison’s fight brought the family closer. She described her great-niece as an inspiration.
“Maddie is amazing. She has been so strong and it has not shaken her faith one bit,” Stewart said. “The family kindness and the ‘every day is special’ kind of thing is just amazing now.”
Madison said this experience changed not only her outlook on life, but also her career path. The self-proclaimed science and math lover wanted to be an orthopedic surgeon. But after her battle with ependymoma, she plans to pursue a career in neurology. She said she wants to help others like her because she doesn’t like the survival rate.
“The odds kind of make me mad,” she said. “So I want to change that.”
Wes and Jennifer said they are in awe of their daughter.
“She’s the strongest person we’ve ever known,” Jennifer said.
Despite her continued struggles, she maintains a remarkably mature outlook.
“You can’t focus on the bad stuff. If you focus on, ‘woe is me, all is bad,’ then you will feel that way,” Madison said. “You have to keep a positive mindset, because then you will feel better. For me, I would have rather seen myself have to go through this than someone else that I really care about.”