Slade’s Story: The Importance of External Support for Pediatric Brain Tumor Patients and Their Families

When a child is diagnosed with a brain tumor, it turns a family’s world upside down. For George Stegall, the news that his 15-year-old son Slade had a craniopharyngioma—a rare, benign brain tumor—was both shocking and overwhelming. Navigating complex medical decisions while seeking emotional support and financial assistance, George came to realize that external resources would play a crucial role in his family’s journey.

Life Takes a Drastic Turn

Slade’s journey began on March 22, 2024, when he suddenly collapsed and began vomiting. A trip to the ER led to tests that revealed a large tumor encased in a cyst growing near his pituitary/hypothalamus glands.

“In the ER, they told us we had to go to Dallas immediately because there was nothing nearby that could handle Slade’s condition,” George recalls. “It was a whirlwind. Suddenly, he was being transported by ambulance to Children’s Medical Center in Dallas, and we were facing surgery.” Living two and a half hours away in East Texas, the distance added another layer of stress to an already difficult situation.

Slade underwent multiple procedures, including surgical insertion of a shunt to drain the cyst and a partial resection of the tumor when it became clear his vision was at risk. A week following surgery, Slade suffered a stroke, complicating his treatment and recovery even further. He required weeks of inpatient therapy and ongoing outpatient rehabilitation.

Moving Forward Without Clear Direction

One of the most difficult aspects of Slade’s diagnosis was the lack of readily available information.

“It’s shocking how little is out there on craniopharyngioma,” George says. “Even the doctors admitted they weren’t deeply familiar with it. The worst part is the unknown—not having clear answers about treatment options or long-term outcomes.”

To bridge the gap, George turned to organizations like the Pediatric Brain Tumor Foundation (PBTF), the Brain Tumor Network, the American Cancer Society, and the Raymond A. Wood Foundation—nonprofits that specialize in brain tumors and rare diseases. These organizations provided insights on treatment options, research, clinical trials, and emerging therapies. PBTF, in particular, became a vital support system, offering a safe space to share experiences and access emotional and financial resources.

The Need for Mental and Emotional Support

Beyond the physical challenges, Slade’s diagnosis took an emotional toll on both him and his family. Having already endured the loss of his mother in 2020, Slade faced additional emotional struggles following his surgery and stroke.

“We knew he needed psychological support,” George explains. “So we found a therapist and a counselor near our home. It has really helped him process things.”

For families going through similar experiences, support groups can be invaluable for providing a much-needed sense of community. The Pediatric Brain Tumor Foundation’s Family Support Team facilitates several such groups and has introduced Slade’s family to many of these resources.

Financial and Insurance Assistance

The financial burden of a serious medical condition can be overwhelming, especially for families who must travel for specialized treatment.

“With gracious donations, we were put up in an Airbnb while we were in Dallas for six weeks,” George says. “But not everyone has that kind of support. That’s why it’s important to know about groups like Neal McCoy’s East Texas Angel Network—an organization in our community—and the Pediatric Brain Tumor Foundation, which can help with financial assistance for travel and medical costs.”

Navigating insurance is another major challenge, but a social worker from Blue Cross and Blue Shield helped George understand coverage options and access additional resources.

“The BCBS social worker has been a huge help,” George says. “She reaches out once or twice a month and has pointed us toward other helpful programs.”

Building a Personalized Support Network

While craniopharyngioma is rare, George has been able to piece together a support system by connecting with charitable organizations that offer idea exchanges and quality of life experiences.

“I started by joining Facebook groups, then looked into Make-A-Wish and another local Texas foundation, Hope Kids,” he explains. “Slade was selected by Make-A-Wish for a trip to Disney World in November and it was truly a bright spot in an otherwise tough year. It helped him take his mind off everything, especially since it was around the anniversary of his mom’s passing.”

Reflecting on what he has learned, George offers this guidance for other families navigating a similar path:

“My advice? Be prepared for a roller coaster ride of emotions and experiences. Remind yourself to take a step back, look at the big picture, and don’t be afraid to ask for help,” he says. “There are organizations out there that can make a real difference—you just have to be patient and persistent enough to find them. And I learned that many of the groups I contacted were happy to refer me to others. So always ask the question, ‘Can you recommend any other organizations I might reach out to?’”

It’s Important to Share Stories

Slade’s journey is ongoing. While part of his tumor remains, radiation treatment appears to have been successful.

“The neurosurgeon said his tumor had actually shrunk, meaning it should be dead and not growing anymore,” George shares after a recent exam. “Slade will still have the tumor, but as long as it doesn’t grow, we won’t need to do anything except monitor it.” Though questions remain about the long-term, this news was a much-needed relief.

By sharing their story, George and his family hope to help other families feel less alone. “For those affected by rare diseases, their stories need to be heard,” George says. “Everyone’s experience is different, even with the same diagnosis. The more we share, the more we can help each other find the resources we need.”