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Survivor helping fund research

August 12, 2018 GMT

Maggie Saal knew something was wrong when her 7-year-old daughter, Camryn, began to experience vision loss, balance issues and headaches in 2012.

A series of MRI and blood tests found three developed primitive neuro ectodermal tumors in Camryn’s brain, and they were inoperable. Small tumors also covered her spinal cord.

At her age, Camryn couldn’t grasp her diagnosis. For Saal and her husband, Andrew, it was a nightmare.

“For a parent, it was horrific,” Maggie Saal said. “That was the worst thing you’d ever have to imagine telling your child they have cancer.”

Not much was known about Camryn’s type of cancer, affecting only 400 children worldwide annually.

With no specific treatment protocol, Camryn was chosen for a blind clinical trial developed by the Children’s Oncology Group, a national cancer institute, while being treated at Riley Children’s Hospital. Doctors told Saal her daughter had a 20 percent chance of survival. 

She received proton radiation for six weeks, which targeted the tumor but not the tissue surrounding it. That was followed by six months of chemotherapy at Riley Children’s Hospital, and then six months of oral medication.

By April 2013, Camryn completed her treatment, and the cancer was in remission.

Brain scans to make sure the tumors were shrinking dwindled from every month, to three months, to six months. Now, at 14 years old, Camryn needs to be checked just once a year.

“I was really, really excited, because now I can just be like a normal kid,” Camryn said.

While the clinical trial worked, the Saals were alarmed by how little research and funding was going into pediatric cancer.

Their daughter had survived, but due to the intense treatment with chemicals, Camryn developed long-term side effects, which include vision loss, permanent hair loss, low cognitive functioning and growth impairments.

“It’s a double-edged sword,” Saal said. “Your daughter, her life is saved, but also, because of the treatment she had to undergo to save her life, her life will never be the same.”

To help other families going through the same experience and the organizations that helped them, the Saals created Brains for Hope in the fall of 2016.

The past two years, the foundation has held the Brains for Hope Gala. In its first year, the foundation was able to raise 100,000 was raised and donated to CureSearch, a U.S.-based nonprofit foundation that searches for cures for children’s cancers.

Saal hopes to continue raising money to fund research to improve cancer treatments for children.

“If we can help one family not go through what we went through, not having the toxic treatment, it will all be worth it in the end,” she said.

According to the American Cancer Society of Indiana, most childhood cancer research is funded by the federal government.

One of the society’s advocacy groups, the American Cancer Society Cancer Action Network, has successfully advocated for increased federal funding for research.

In June, the STAR Act : the Childhood Cancer Survivorship, Treatment, Access, and Research Act : was passed into law. It will increase funding for childhood cancer research, improve data collection so pediatric oncologists can better learn from each other and expand research on the long-term effects of childhood cancer treatments.

Camryn was nominated by family friend Lindsay Chaille to be the subject of local photographer Meg Miller’s project for the magazine “Beauty Revived.”

Miller said when she read the nomination for the magazine’s Beautiful Children campaign, Camryn’s story gave her goosebumps.

Once Miller’s article is published Wednesday, she hopes other families affected by pediatric cancer will be able to remain positive.

“I want for people to realize that just because they’re told one thing, like a diagnosis, don’t take it as a sentence, see it as a challenge,” Miller said.

As for Camryn, she likes to help with Brains for Hope and make crafts. For the 10,590 children with cancer in 2018, she has one message:

“Just be brave and you can do it.”