Neb. girl survived pediatric cancer and chemo; now her family aims to help find a cure

GRETNA — Peace doesn’t last long in Amanda and Brady Reinert’s Gretna home.

On a seemingly calm Sunday evening, 11-yearold Ava was eager to share her cheerleading expertise with her 4-year-old brother, Bennett. They started with a forward tumble. Then it was time to do a flip.

Ava sometimes forgets her brother isn’t one of her dolls. She gets carried away.

“He’s real! He’s real!” Ava’s parents remind her. “You can’t toss him around!”

Ava loves her little brother, even though he gets on her nerves sometimes, she said in a big-sister tone, spilling honesty with a bubbly giggle. Bennett loves her, too.

They are children enjoying childhood. Amanda and Brady prayed for times like this.

Ava was diagnosed with leukemia when she was 4. She survived 800 days of chemotherapy. About a month after her final treatment, Bennett was born with Down syndrome – a surprise realized at birth, and one that makes him three times more likely to develop leukemia.

The Reinerts created Ava’s Army, a nonprofit dedicated to pediatric cancer research, out of a desire to help other Nebraska families. They quickly discovered a large community desperate for hope just like they once were.

“It feels like I have a connection to them,” Ava said just ahead of the fourth annual Sugarplum Ball, the nonprofit’s marquee fundraiser. “It almost feels like we’ve been through the same thing.”

Days later on Dec. 2, Ava and dozens of other survivors, decked out in ball gowns and formal attire, took to the spotlight. The Sugarplum Ball is a celebration, a night to let kids – survivors – just be kids. They took pictures with Disney princesses, swapped stories and, free of medical equipment and inhibitions, they danced.

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Amanda, a former Mrs. Nebraska, and Brady welcomed Ava into the world in October 2012.

Shortly after performing at her preschool holiday program, Ava rolled her ankle while. When it didn’t heal, they went to the doctor. Doctors sent Ava home in a boot, but the pain spread.

Within days she was bedridden. Then came blood tests, X-rays and needle pokes. The 4-yearold girl screamed for her parents to make the pain stop.

“I would sometimes feel sad but I knew that they were trying everything to make me happy,” Ava said. “It was definitely very scary because needles and pokes were just coming at me at once and it was just a very hard time.”

The 13-week journey for answers culminated in a trip to Children’s Hospital in Omaha. On March 27, 2017, the diagnosis: leukemia. Chemotherapy started the next day.

Ava endured daily rounds of chemo that first month. According to the American Cancer Society, 95% of pediatric cancer patients go into remission after four weeks. Those who don’t have their doses exponentially increased. Many don’t survive.

Amanda remembers seeing one of the nurses dressed in a hazmat-looking suit. Ava’s potential cure was so toxic that the nurse couldn’t risk exposure. Amanda, feeling mostly helpless, wanted to wipe her daughter’s tears away. No, the nurses told her. Ava’s tears were too hazardous.

“We are literally potentially killing her to try and save her,” Amanda remembered thinking. “We still don’t even know the extent of the damage that we’ve done to her, and that’s very hard to live with.”

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Amanda is well practiced living with things that are hard to live with. She was sexually assaulted dozens of times by her grandfather starting when she was 2, she said. She was targeted again when she was 11 by a close family friend.

Amanda didn’t share her story until after marriage. She made survivor advocacy her platform during her reigns as Mrs. Nebraska 2014 and Mrs. USA Universal 2017.

Amanda met a multitude of fellow survivors during that time. It only somewhat prepared her for the hurting community she’d join as a mother.

Nebraska ranks in the top 10 states per population for instances of pediatric cancer.

While there is no definitive cause, medical professionals know it likely is tied to genetic predisposition or environmental factors, said Dr. Don Coulter, a professor of pediatrics at the University of Nebraska Medical Center and a pediatric oncologist at Nebraska Children’s Hospital.

A child who survives the initial cancer diagnosis is 75% more likely to suffer from health problems – maladies ranging from kidney and liver issues to infertility to secondary cancers. Ava is three times more likely to develop breast cancer than other women.