Survivors of pediatric brain tumors share a special bond
On an evening in late September, 20 young adults gathered around a conference table, decorating caramel apples with colorful pieces of cereal and candy. The room filled with small talk, laughter, and an air of camaraderie.
Near the end of the table sat three friends, Jack Coates, Bernard Manning, and Katie Nickerson, chatting as they worked. Like the others at the table, the three are veterans of a rare sort: adult survivors of pediatric brain tumors. They had gathered at Dana-Farber Cancer Institute for the monthly meeting of STEPS, a support group for brain tumor survivors.
Friends for years, the trio share a special bond, and relish their time together.
“We just understand each other,” said Manning, 28. “I can tell Jack or Katie things I won’t tell other people. And when Jack is trying to say something, I know what he’s trying to say.”
Nickerson, Coates, and Manning are part of a small but growing group, and a generation ago there were few people like them. In the 1970s, only about 30 percent to 50 percent of children with brain tumors lived for five years after diagnosis. Now that number is 73 percent, according to the Central Brain Tumor Registry of the United States.
But as more patients live into adulthood, they often face debilitating “late effects” — seizures, hearing loss, cognitive impairment, secondary cancers — caused by the original disease and the treatment. For many survivors, late effects lead to isolation, anxiety, and depression. Even as more clinicians recognize these problems, survivors still have few places to turn for support.
“When I was diagnosed with cancer I lost all my high school friends,” said Coates, 32. “Meeting Bernard and Katie was like getting a brother and a sister.”
The friends agree that they are lucky to have each other to lean on.
“Being a young adult brain tumor survivor is really, really difficult,” said Cori Liptak, a senior
psychologist at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. “You don’t have the structure of school to make friends, and if you haven’t been able to find a job, you don’t have that.”
To fill this gap, in 2007 Liptak created STEPS. The group meets once a month for dinner and activities such as casino night and Zumba.
“It’s not a traditional support group. It’s really based on having the kids socialize,” said Liptak, who says the group draws 40 to 50 survivors and parents each month. “The success of the program has shown us that this was a huge issue. Simply being in a room with people who have a shared medical experience is therapeutic.”
While brain tumors in children are relatively rare, about 4,300 new cases of childhood brain and central nervous system tumors will be diagnosed in the United States in 2013, according to the tumor registry, and about 3,050 will be in children under age 15.
The treatments for brain tumors, including radiation, chemotherapy, and surgery, have improved dramatically in recent years, but can still sometimes cause devastating long-term effects.
“Brain tumors have the highest morbidity of any of the pediatric cancers, and it’s because we’re messing around in the brain,” said Dr. Peter Manley, director of the Pediatric Neuro-Oncology Outcomes Clinic at Dana-Farber/Boston Children’s Cancer and Blood Disorders Center. “Some of the other organs are great at regenerating themselves; the brain is not. And so when damage is caused to the brain, sometimes that never heals.”
Nickerson, Manning, and Coates have all suffered ongoing problems from their tumors and treatment, but Coates has been the hardest hit. He was first diagnosed at 19 with an aggressive brain tumor called medulloblastoma in 2001, after finishing his freshman year at Johnson & Wales University in Rhode Island. A grueling year of treatment beat back the cancer, but the three surgeries, 52 weeks of chemotherapy, and six weeks of radiation left the 217-pound college baseball player weighing only 97 pounds.
Then in 2011, Coates learned he had myelodysplastic syndrome, a pre-cancerous condition, most likely caused by his treatment, in which the bone marrow can’t make enough healthy blood cells. A bone marrow transplant saved his life, but he now suffers from an array of problems, from hearing loss to a weak ankle to ingrown toenails. The constant infections in his two big toes became so bothersome that Coates recently had the nails removed.
Nickerson, 26, was 8 when she was diagnosed with a cancer of the pituitary gland called craniopharyngioma. She still suffers from hormone deficiencies that cause headaches, fatigue, and other problems.
Manning was diagnosed at 18 with medulloblastoma, the same type of tumor as Coates’s, but his late effects are not nearly as severe. He has tinnitus in both ears, some memory loss, and occasional trouble sleeping. He also finds it weird that both he and Coates became “bleached” — their skin is several shades lighter than it used to be, probably because of the radiation treatments. “We’re all a little quirky,” he said with a smile.
Last year, Nickerson and Manning watched as Coates endured the bone marrow transplant and stood by him through the isolation that followed. They visited him regularly at the hospital and at home, careful not to touch anything that he might touch because the transplant left him susceptible to infections. Coates, though frail, still walks with a trace of athletic swagger and talks with a tough-guy bravado, reminders of his days as an athlete. The memory of his friends’ constancy brings him to the brink of tears. “To me it was the most amazing thing,” he said.
Facing death and disability at a young age gave Manning, Nickerson, and Coates a keen appreciation for life. And yet, in some ways, their illnesses have prevented them from fully entering adulthood.
“They’re young adults, but they seem younger,” said Eileen Nickerson, Katie’s mother. “At their age, people are getting married, getting started in their careers. With Katie, I wonder if she could ever maintain a full-time job to support herself. She was diagnosed at age 8. Now she’s 26 and she still has medical problems. It never ends.”
But the three friends share a cautious optimism for the future. Nickerson, who received a certificate from Shawsheen Valley School of Practical Nursing in 2010, was recently hired as a part-time phlebotomist. Manning earned an associate’s degree in television broadcasting and works part time at the West Roxbury YMCA. And Coates is engaged to be married. The three are painfully aware of what they have lost, but also able, with the help of their friends, to bear it.
“I was always at the doctor when I was a kid. It was just a part of my life,” said Nickerson. “I kind of missed my whole childhood.”
Coates leaned toward her. “If you want,” he said, smiling, “I’ll stop at Toys-R-Us on the way home and buy you a doll. Would that make up for it?”
Nickerson laughed. “Yes, that would make everything better.”
Barbara Moran can be reached at Written