On Saturday, many gathered at the AMVETS Post 2 in Des Moines for a benefit for Mara Nevins, 4, of Adel. Nevins was diagnosed, in November, with anaplastic ependymoma, a life-threatening cancerous brain tumor.
Brandi said that the idea for the benefit came from her mother-in-law, Ruth Nevins and that they “were just told to show up” the day of.
“We didn’t need to do anything,” Brandi said. “Just, they were having a benefit, this is when it was and if Mara was healthy, we were going to be here.”
Mara, her mother Brandi, her father Lyle and her little sister Brinley were all in attendance at the benefit in Des Moines. Brandi called the turnout for the benefit “incredible.”
Brandi said that while Mara does get physically better each and every day, the biggest struggles are the “unknown.”
“She has some paralysis on her right side,” Brandi said. “It’s very mild but it affects her speech.”
Right now, Mara is undergoing radiation treatment at the University of Iowa Hospital in Iowa City five days per week. Brandi, Mara and Brinley go and stay at the Ronald McDonald House in Iowa City during the week, traveling there on Sundays and back to Adel on Fridays, so Mara can have her radiation treatment every morning, while Lyle and their oldest daughter, 17, stay at home in Adel.
They also have many other appointments each day, including with oncologists, physical therapists, teachers, speech therapists and more.
Brandi said that it’s been “very important” to keep the two youngest daughters, Mara and Brinley, together through this.
“They have an incredible bond that I don’t think we realized until Mara got sick,” Brandi said.
Brandi said that they have radiation treatment scheduled through Feb. 15 and that doctors want to continue with Chemotherapy to follow up with that since anaplastic ependymoma is a very aggressive kind of cancer.
Brandi said Mara’s tumor is a part of her brain, in that it is wrapped around her brain stem and has major arteries that run through it. Because of that, doctors were only able to take out about 70 percent of the tumor during surgery and are continuing to go after it with the radiation and, eventually, chemotherapy.
Brandi admitted that prognoses and survival rates for anaplastic ependymomas are “not good.”
According to St. Jude Children’s Research Hospital’s website, the overall five-year survival rate for those with ependymoma is about 82 percent. For children up to 19 years of age, the five-year survival rate is about 72 percent.
“I have friends who say ‘she’s not a statistic,’” Brandi said. “And our surgeon said he’s a hundred or zero. She’ll either survive it or she won’t. It’s not a sixty-forty split.”
Before the diagnosis, Brandi said that Mara was a completely normal 4-year-old and that she was even hitting all of her milestones for growth. She even grew four inches last year.
“She had a head tilt, and then she started vomiting in the mornings, and that’s how we knew,” Brandi said. “That’s how we got the doctors to say ‘go get a CT.”
The news came as a surprise to family and friends because the diagnosis had happened on Nov. 30 and people had just seen her for Thanksgiving and she was completely normal.
At the benefit, Mara could be seen walking around like a normal child, a sign of some of the physical progress she has made.
“After surgery she couldn’t walk on her own, she couldn’t swallow,” Brandi said. “Her vision has gotten much better too.”
Brandi said that Mara was seeing double shortly after her surgery.
One of the visitors at the benefit was Rep. David Young, the U.S. Congressman for Iowa’s Third District.
“I think that most of us are wired to want to be helpful to one another in any way we can and there’s a real satisfaction out of doing that for me, giving back in any way I can,” Young said. “And same with the folks inside (the benefit). We see a wonderful family here going through some hard times and we think ‘what if this was us?’”
Young said that reaching out to help others is something that reflects Iowa values.
“That’s what we do. That’s who we are,” Young said. “I think that’s Iowa. That’s a value that we all share and I hope it becomes infectious when people find out about, not just what’s happening here, but all the other instances that you don’t hear about where people are just doing the right thing for the right reasons.”