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For Teenage Cancer Patients, Social Well-being is a Priority

Alli with her family: Tim, Jess, Emily and Andi.

Like most teenagers, Allison “Alli” Zellers loved to sleep late on weekends. But one Sunday morning, Alli’s plans to stay in bed were interrupted by a twinge of pain at the back of her neck.

The then 13-year-old and her parents assumed the pain came from a pulled muscle related to Alli’s favorite sport, volleyball. But, when the pain persisted despite rest, medication, and physical therapy, her doctor ordered an MRI.

Alli and her family were shocked to learn that the MRI showed a tumor along the top of her spine. Soon after, she was diagnosed with a chordoma, a rare type of bone cancer. Just 300 new cases of chordoma are diagnosed each year, most of them in men between the ages of 50 and 70.

As an eighth-grader living with a cancer diagnosis, Alli suddenly faced an entirely new set of teenage challenges.

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Alli attends her sister’s volleyball tournament shortly after surgery to remove her tumor.

“The stress of trying to live a normal life while going through treatment was the hardest part,” she said. “I missed a lot of school. I worried about what my friends and classmates would think when they saw me wearing a neck brace and losing my hair.”

Treating Alli’s cancer required a full team of experts in her hometown of Lancaster and Philadelphia, including a pediatric neurosurgeon, oncologist, radiologist and behavioral health counselor. Lisa Kernen, MD, of Penn Medicine Lancaster General Health Roseville Pediatrics, served as Alli’s “medical home,” a role in which a primary-care physician coordinates the patient’s physical and emotional care.

“Since her cancer was at the base of her neck, near the brainstem and spinal cord, we knew we needed to quickly make arrangements with neurosurgeons and oncologists at Children’s Hospital of Philadelphia (CHOP),” Kernen said.

Alli’s treatment began with a 12-hour surgery to remove part of the tumor and insert metal rods in her neck to take the place of the portion of her spine that also needed to be removed. After a weeklong hospital stay, Alli returned to Lancaster.

“Although Alli looked forward to returning to school after surgery, she was anxious about the neck brace she had to wear to help stabilize her head and neck,” said Alli’s father, Tim Zellers, adding that the stability of Alli’s head and neck were so precarious, her school allowed her to leave classes early to avoid contact with students in the halls.

Shortly after Alli’s return to school, she went back to CHOP for a second surgery to remove the rest of her tumor.

“Our family traveled to Philadelphia daily for two months every night for radiation treatments at Penn Medicine’s Roberts Proton Therapy Center,” said Tim. “It was physically and emotionally exhausting for Alli, who kept up with going to school during the day.”

Alli had her last radiation treatment just days before her 14th birthday.

Alli celebrates her high school graduation in May 2018.
“I frequently checked in with Alli’s family to make sure they were supported through the process,” Kernen said. “We worked together with Alli’s team of physicians, as well as her school district, to make sure she was getting what she needed both for her continued education, and socially.”

Licensed behavioral health counselor Caroline Thomas Barnhart, MSS, LCSW, was part of the team of social workers, counselors, and chaplains supporting Alli. Caroline saw Alli at the Ann B. Barshinger Cancer Institute in Lancaster, during and after her treatment.

The two worked together to manage the stress and anxiety that often accompany cancer treatment, including the fear of a recurrence. Caroline also helped Alli cope with managing schoolwork, the stress of treatment-related hair loss and other challenges, and rebuilding her confidence to adjust at school with the support of her family and friends.

“Managing friendships and life in general can be challenging for any 13-year-old,” Caroline said. “For Alli, having a place to talk openly and honestly about her experiences helped to alleviate some of her stress and anxiety.”

Caroline used several therapeutic techniques with Alli, including art therapy, which eased the intense treatment process through drawing pictures and narrating events. Those experiences led Alli to capture her story in a recently published book, The Girl With Dreams, which she considers another form of therapy during the healing process.

“Alli is a true heroine who is using her cancer experience and the challenges she overcame to help others,” Caroline said. “She tells her story with honesty and authenticity, using her voice to encourage others to recognize their struggles, to seek help, and to know that healing is possible.”

Today, Alli is a healthy 18-year-old who has annual MRI scans and check-ups with her oncologist. A freshman at the University of Pittsburgh’s Honors College, she hopes to pursue a career in medicine.

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Alli rings the bell at the Perelman Center in Philadelphia.

“It wasn’t until I went through treatment for a chordoma that I realized how impactful an entire care team is to someone,” she said. “My physicians and counselors made all of the difference for me while going through treatment, attending school, and trying to be a normal teenager.”

When asked what advice she would give to other children or teens recently diagnosed with cancer, Alli said, “Celebrate your victories, like finding the courage to walk through the hallway at school with your friends while wearing a neck brace, or returning to the volleyball team. Celebrating the small victories helps you through the struggles.”

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