Winner’s frequent headaches alert doctors to brain tumor
COSHOCTON – In December 2018, Ava Winner started having frequent headaches that were almost always accompanied by vomiting. The family of this active nine-year-old girl thought that it was just a viral bug that was going around or perhaps the beginning of frequent migraines. However, it was something much worse that Winner’s family could have never imagined.
Winner was a typical nine-year-old girl who participated in basketball, piano, and the Coshocton Community Choir. The headaches would usually erupt after a game of basketball or in the middle of the night, which would wake her up. After a particularly rough night of headaches and vomiting, Winner’s family took her to see her pediatrician, who immediately sent them to Genesis for a cat scan.
On Jan. 9, after her cat scan, it was discovered that she had a mass in the fourth ventricle of her brain. The ER doctor said it looked like medulloblastoma, a brain tumor found near the base of the skull, that was building up craniospinal fluid, which was causing her headaches. They were immediately sent to Akron Children’s Hospital where she received another cat scan to confirm the findings from Genesis. She and her family met with a neurosurgeon that evening and the next morning, Winner had surgery to insert an external ventricular drain (EVD) that would relieve the build-up and pressure.
On Jan. 11, Winner underwent brain surgery to remove the tumor. The surgery lasted 10 hours, and afterward, she was admitted into the PICU at Akron. After this surgery, she was able to smile and answer a variety of questions such as her name and birthday.
“The day of her surgery, there was this eerie calm around us, and we didn’t talk about it until after she had gone back for the surgery,” said Melissa, Ava’s mother. “We could feel the prayers surround us.”
Just a few days later, on Jan. 16, she had another surgery to remove the EVD and had a permanent programmable VP shunt implanted in her head that she will have for the rest of her life. Her ability to speak was lost and her whole right side was affected. They attributed these symptoms to posterior fossa syndrome, which is a side affect of the surgery. She was unable to walk and would sway in a circle while sitting. She was also cross-eyed and had double-vision.
Her doctors were worried that she might have had a stroke as a result of the surgery, so they removed her braces and did an MRI to check for a stroke. She did not have a stroke and she was moved to the rehabilitation floor.
Results came back in late January that it was grade four medulloblastoma, not the most aggressive form of the disease, but also not the least. Ava’s next step was radiation followed by 48 rounds of chemo. Her parents, Dan and Melissa, made the decision to do proton radiation, which is less harmful to healthy cells. Ava then travelled to Cincinnati Children’s Hospital to complete her radiation treatment.
“The staff at both hospitals think about the feelings of the kids,” said Melissa. “I can’t say enough good things about them. They do crafts with them, bring in therapy dogs, and even had musicians come in and perform.”
On Feb. 6, Ava was transported by squad to Cincinnati Children’s Hospital Main Campus. She stayed for a week while they specialized her treatment plan. She was then transported to their Liberty Campus where she endured six weeks of proton radiation.
“My sister and her family were a huge help, and our workplaces were amazing,” said Melissa. “I work at River View Schools and Dan works at AEP and they were phenomenal.”
Ava also celebrated her 10th birthday while in the hospital on March 12. The staff at the hospital threw her a party, and her friends came down to Cincinnati to surprise her on her special day.
“She makes friends wherever she goes,” said Melissa. “She’s been like that before and was like that through the whole process. She just has that personality. Once you meet her, you don’t forget her.”
Later that month, Ava was able to come home where she enjoyed a four-week break between her radiation and chemotherapy.
On April 29, Ava underwent surgery at Akron Children’s to place a med port in her chest for chemo treatment, and she had her first round of chemo later that week. Her last chemo treatment will be in March 2020.
“It’s hard to look back, but at the time, we were fine,” said Melissa. “It’s what we had to do, and I like to stay in the present. I can’t go too far back or too far into the future because it’s too scary to think about.”
Despite Ava’s situation, she has stayed involved in her community.
“Our community has been very supportive,” said Melissa. “She got to lead the River View football team on the field for her older brother’s first game of his senior year. She got to throw out the first pitch at a softball game and got to meet a penguin at the zoo.”
Ava’s favorite color is blue, and people in the community have always sported that color in support of Ava.
“People I graduated with in 1995 had a fundraiser for her,” said Dan. “Everyone started getting teal tips for Ava. River View had a blue out for Ava and so did Coshocton and Ridgewood.”
However, her treatment wasn’t the worst thing for Ava during her time in the hospital.
“The worst thing in the hospital was that it didn’t snow,” said Ava. “And I like snow.”
Throughout it all, Ava has remained positive and has never questioned “why me”?
“We’ve just got to think it’s all a part of God’s bigger plan,” said Dan. “I think maybe it will lead her into something special later in her life. Whether she goes into neurosurgery or something else, it’s got to be part of God’s bigger plan.”
Melissa has some advice for parents going through similar situations with their children.
“Stay positive, and stay in the moment,” said Melissa. “Eventually, I think we’ll look back and think, wow, that’s why we took all those videos. Look what we’ve overcome. Be thankful for the people around you and live in the moment. Celebrate the little stuff, and you do have to have faith because it’s scary. It’s the unknown, and you do have to have faith to stay positive and get through it.”
Ava has her own advice.
“Don’t give up hope and trust in God.”
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