BY SUSAN KEETER
Charlie Poole, 16, went hiking in Highland Forest last spring. It was an accomplishment for a young man who, 26 months earlier, was diagnosed with a brain tumor that left him with weakness in the right side of his body, vision problems and a host of other challenges.
“I like walking in the woods and just listening to the birds,” Poole explained during a H.O.P.E. social event held in May at the Baldwinsville YMCA.
H.O.P.E. (Helping Oncology Patients and Families Engage) represents another accomplishment for Poole. He championed the idea of organized social activities for children and teenagers treated at the Upstate Cancer Center, “so we can get to know other people who understand the whole cancer situation.”
Poole talked with Upstate social worker Stephanie Barry, nurse manager Molly Napier and nurse navigator Kristen Thomas about his idea. Other patients and families shared Poole’s interest, and H.O.P.E. was created.
The first event, held in January 2018, featured a group discussion and practice of stress management techniques led by Kaushal Nanavati, MD, medical director of integrative therapy at the Upstate Cancer Center.
The second event was all fun and treats. Mothers painted landscapes together, families had portraits taken, and children played board games. The young cancer patients “shopped” for Mother’s Day gifts from a treasure trove of donated gifts. Poole chose a handmade bracelet for his mother. Pet therapy dogs snuggled, licked and played ball. Everyone enjoyed pizza and gourmet cupcakes.
Throughout the evening, Poole watched his idea come to life and reflected on how it came to be.
Poole was a member of the track team at Fayetteville-Manlius High School. “I started leaning to one side when I ran,” he recalled. “When one of my teammates gave me a friendly shove, I fell to the ground and couldn’t get up. I got nauseated when I laid on my back.
“My pediatrician saw that my pupils were different sizes and sent me to the emergency department at Upstate,” he continued. It was Feb. 2, 2016.
Emergency doctors ordered a magnetic resonance imaging scan. Because metal would interfere, Poole’s braces had to be removed.
The results of the scan arrived with a flood of specialty doctors. Poole had diffuse intrinsic pontine glioma, known as DIPG. It’s a lethal brain-stem tumor. Unlike most pediatric cancers, which have an overall survival rate around 83 percent, only about 10 percent of people diagnosed with DIPG survive for two years after diagnosis. Poole died Aug. 6, 2018, two and a half years after his diagnosis.
When Poole was diagnosed, he learned that surgery was impossible because of the location and type of tumor. Treatment — to improve his quality of life, not cure the cancer — was radiation, which could be done on an outpatient basis.
Poole and his parents, Keith and Lynda, went home to absorb the news. With his doctors’ permission, they took a weeklong family vacation before their son started treatment in 2016.
Six weeks of five-day-a-week radiation took the hair off the back of Poole’s head and affected his sense of smell. His wavy, ash-blond hair returned, but Poole’s sense of smell and taste were still affected.
His parents spent hours online, connecting with other families affected by DIPG and searching for options. With support from his oncologist, Irene Cherrick, MD, Poole enrolled in a 14-month clinical trial at the Cincinnati Children’s Hospital, testing the effects of chemotherapy drugs on DIPG.
“My tumor stayed stable,” noted Poole. “But I’m not sure it helped.”
In June 2017, near his 16th birthday, Poole learned that his tumor was growing again. After careful consideration, Poole was given 10 more radiation treatments. Because of the gravity of his condition, his family chose to try an experimental treatment in Mexico, which involved traveling back and forth for four months. In October 2017, Poole had a setback at home and was unable to return to Mexico for treatment.
Cherrick later prescribed two new chemotherapy medications, one of which required permission from the manufacturer and the U.S. Food and Drug Administration. Poole’s follow-up imaging scans showed that his tumor had changed shape.
“Being told that I am going to die has changed me for the better,” Poole said in May. “I am more caring and compassionate.”
One reminder of his compassion: the H.O.P.E. events, which connect strangers with one another.
H.O.P.E. events are open to any pediatric cancer patient and his or her family. Contact nurse Kristen Thomas for details: 315-464-7227.
Funding for the H.O.P.E. event was provided by the Upstate Foundation (Paige’s Butterfly Run and Ozzie’s Army funds) and by On My Team16. That new non-profit was inspired by Jack Sheridan, a student athlete at Le Moyne College and a cancer survivor who was treated by Irene Cherrick, MD, at the Upstate Golisano Children’s Hospital. Click here to read Sheridan’s story.
This article appears in the summer 2018 issue of Cancer Care magazine.