Out of Grief Comes Hope

Research funding leads to new treatments for pediatric brain tumors

It was exactly five years after Olivia Caldwell succumbed to a rare form of pediatric brain cancer when Katie Caldwell-Burchett learned there was finally a treatment for the disease that took her 20-month-old baby girl.

The news came while Katie, CEO and founder of the Olivia Caldwell Foundation, was visiting Dr. Nick Foreman’s Lab on the Anschutz Medical Campus, the main recipient of her foundation’s pediatric brain tumor research funds. 

“I don’t know what could possibly be more bittersweet,” Katie says. “They discovered the cure because of their quest to find answers for us and the funding we’ve provided through Olivia’s foundation. But the cure still came too late to save my baby.”

Even though Olivia couldn’t be saved in time, Katie found comfort and purpose ensuring her daughter’s legacy is one of hope and healing for countless children with pediatric brain tumors.

Suffering an unimaginable loss

When Katie gave birth to premature twins Wyatt and Olivia in February 2012, she thought the month they spent in a Neonatal Intensive Care Unit would be the biggest challenge she would face as a new mom.

But when Olivia was 2 months old, Katie noticed she wasn’t developing at the same pace as her twin brother and was sleeping most of the time. At 4 months old the seizures began, requiring Olivia to be airlifted to Children’s Hospital Colorado from the family’s home in Rawlins, Wyoming. That’s when doctors discovered a tumor growing in Olivia’s brain, which had spread down her spine like a spider web.

The life-threatening diagnosis required frequent travel for treatment at the Center for Cancer and Blood Disorders at Children’s Colorado –  a 500-mile, round-trip journey from the family’s home. After Olivia completed a grueling 7-month, high-intensity chemotherapy regimen, there was no sign of the tumor.

After a few months of relative normalcy, the family received the devastating news that not only had Olivia’s tumor returned, it had come back with a vengeance. The tumor, now classified as a grade 4 glioblastoma multiforme, was rapidly spreading throughout Olivia’s tiny body. With no treatment options available at the time, Olivia was sent home for hospice care. She died five days later on Oct. 22, 2013, cradled in her parents’ arms.

Finding purpose through philanthropy

A mere three weeks after Olivia’s death, Katie pulled herself from the depths of her grief, raw yet determined to honor her daughter’s memory by making a difference.

“All I knew was that I wanted to do something to remember my daughter and to support research,” Katie recalls.

She called Children’s Colorado and inquired about research labs seeking cures for pediatric cancer. She was surprised to learn that Olivia’s neuro-oncologist, Dr. Nick Foreman, belonged to one of the largest pediatric brain tumor research groups in the country on the Anschutz Medical Campus.

“I didn’t even know Dr. Foreman had a lab until then,” Katie recalls. “We went to tour it and we were totally blown away; that’s how this whole journey started.”

Dr. Foreman is the Seebaum/Tschetter Chair of Pediatric Neuro-Oncology at Children’s Colorado. He and his team have spent years in the lab researching targeted therapies in low-grade gliomas, the kind of brain tumor that killed Olivia. Gliomas can mutate, but when Olivia was diagnosed, her particular mutation had not yet been recognized.

Katie quickly established the Olivia Caldwell Foundation, running it out of her basement with the help of family and friends and knowledge gained from How to Start a Nonprofit for Dummies books.

“At that point, we still lived in a really small town and I thought we would just do what we could to help,” she says. “I never imagined the growth we would see over the course of the years.”

Funding lifesaving discoveries

Almost seven years have passed since the Olivia Caldwell Foundation’s humble beginnings of board meetings held around Katie’s kitchen table. Now based in Casper, Wyoming, the nonprofit has grown in supporters and sophistication. Through nearly $550,000 in donations, the organization has fully funded eight brain tumor research projects at Children’s Colorado and partially funded 30 others.

“It’s been fairly quick progress, and we have identified more mutations in the process,” Dr. Foreman says. “This has led us to consider targeted therapy more generally in our patients, and we’ve now succeeded in using targeted gene therapy for high-grade aggressive tumors. We couldn’t have done this without the support of donors, so I have enormous admiration for Katie and what she has done.”

Katie’s support also enabled the Foreman Lab and other pediatric brain tumor researchers at Children’s Colorado to generate the data needed to apply for and receive large federal grants. Their work has culminated in finding cures for several types of pediatric cancer, including the glioma that killed Olivia.

 “It has surpassed whatever I thought could exist in my wildest dreams,” says Katie.