For an assignment at Bala Cynwyd Middle School when he was 11 years old, Michael Schiller wrote a 15-page autobiography. He devoted one page to his “changing point” at age 6.
“I had an interesting experience that would stay with me for the rest of my life. It all started when I began getting headaches. I, Michael Schiller, had a gangleogleoma,” he wrote, misspelling ganglioglioma. “This probably means nothing to you, but to clear everything up, I had a form of brain cancer.”
That sixth grader grew up to be an accomplished jazz pianist, a cancer activist, and a beloved social worker at Children’s Hospital of Philadelphia (CHOP), where he was treated. His story is a testament to his resilience and to therapeutic advances. It also illustrates why a whole field of medicine has evolved to help childhood cancer survivors with the lifelong aftereffects of treatment.
But his story also shows the burden and challenges of being vigilant for the cruelest consequence: another cancer. The head radiation that saved him as a child also damaged healthy cells, likely seeding the sinus tumor that spread and ended his life in September at age 36.
“When he turned 21, I said, ‘You’ve got to be responsible for your health’ — and he was,” said his mother, Maryanne Schiller, 70, who now lives in Philadelphia. “But after 28 years, you kind of think you’re doing OK. We all stopped being so mindful and watchful.”
Less toxic treatment
Today, 85% of children diagnosed with cancer survive at least five years, and most are cured.
“Kids’ cancer is a big success story,” said Tara Henderson, an oncologist and survivorship researcher at the University of Chicago’s Comer Children’s Hospital.
Treatment has become less toxic, primarily because radiation is used more sparingly. Dramatic evidence comes from the Childhood Cancer Survivor Study, which has followed almost 24,000 survivors in North America: Radiation use plummeted from 77% of children treated in the 1970s to 33% treated in the 1990s, while the incidence of secondary cancers fell from 2.9% to 1.5%.
“And we’ve continued to reduce radiation therapy,” said Lucie M. Turcotte, a pediatric oncologist at the University of Minnesota’s Masonic Children’s Hospital, who led that analysis. “What we don’t fully understand is the late effects of newer chemotherapies, targeted therapies, and immunotherapies. That’s going to be the next chapter in the story.”
Treatment is always a risk-benefit balancing act. For example, even though research has shown that older chemotherapies known as alkylators and anthracyclines increase the chance of future breast cancer in survivors, these drugs remain important to curing childhood leukemias and sarcomas.
Schiller, diagnosed in 1989, posed a dilemma for doctors at CHOP. His rare brain tumor, centered on his optic chiasm, had many tentacles, so it couldn’t be surgically removed. Existing chemotherapies would not penetrate his brain’s protective barrier of blood vessels.
“He had to have massive cranial radiation. They didn’t have protons back then,” his mother said, referring to proton beam therapy, which reduces damage to healthy tissue.
Fortunately, intelligence tests showed that the radiotherapy hardly dented his high IQ. Even so, he was subjected to stares and worse when he started first grade with a big scar on his half-shaved head, impaired vision, and steroid-induced bloating. CHOP sent a nurse to his school to edify his classmates.
“I had challenges to deal with the criticism,” he wrote in his autobiography, dedicated to his parents and big sister Brana. “I was different from the old me and the rest of the students!”
Maryanne Schiller, then an Upper Merion high school teacher, took a semester off to manage her son’s recovery, including daily growth hormone shots and countless appointments with oncologists, radiologists, endocrinologists, and eye doctors.
She and her husband, Bob, proudly watched as their son adapted. He had trouble reading piano music — notes appeared to bounce on the page — so he learned jazz, a genre he could embellish. (His eighth-grade ska band, Shrimp Skampi and the Skallops, went on to gigs at the Trocadero Theater.)
At age 15, a nighttime car ride in heavy rain prompted him to cede a teenage rite of passage.
“He said, ‘I can’t learn to drive. I can’t see. I’m just going to have to work on my personality and get rides from friends,’” his mother said.
A tricky transition
About one in every 600 young adults in the U.S. — 270,000 people aged 20 to 39 — is a cancer survivor, based on federal data. For most, the transition from pediatric to adult care is full of gaps and pitfalls.
To be sure, the situation is better than when such children rarely survived to adulthood. Now, expert guidelines for follow-up care, and clinics devoted to coordinating that care, help young adults anticipate and manage the myriad challenges, such as infertility, premature menopause, heart and lung damage, hearing loss, genetic counseling, and medical debt.
The University of Pennsylvania, for example, has a survivorship clinic that provides customized care plans. The director, Penn professor of nursing Linda A. Jacobs, founded the center in 2001 after realizing too many survivors didn’t fully understand how their cancer history could shape future dangers.
“Our goal isn’t to frighten people,” Jacobs said. “Our goal is to make it so people follow up.”
The problem is, most childhood cancer survivors can’t access such programs or don’t want to.
“Eighty-five percent are cared for by primary-care doctors,” said Henderson in Chicago. “There’s a gap in getting [survivorship care] knowledge to those doctors.”
Many patients just want to put cancer behind them. Gabrielle Millman, 32, of Lower Merion, remembers little of her treatment for leukemia as a toddler, but she vividly remembers conflict with her mother over ongoing care.
“I didn’t want to go to doctors’ appointments. I wanted to be normal,” Millman said. “My coping mechanism was: It didn’t happen to me. It happened to a 2-year-old.”
Millman, now one of Jacobs’ patients at Penn, said her attitude changed with maturity — and the birth of her own daughter.
As it happened, when Schiller was diagnosed, Jacobs was a family friend. She was a godsend during his recovery, even teaching Maryanne Schiller to give the daily growth hormone shots. Yet Jacobs couldn’t persuade him to keep up with checkups as college and employment took him far from home.
“It was very upsetting to me that Michael wouldn’t come in for follow-up” as an adult, Jacobs said.
But if Schiller let his guard down about his risks, he never stopped appreciating his “changing point.”
Armed with a psychology degree from the University of Pittsburgh, he worked in a neuroscience research lab in Boston but wanted more direct contact with people. He went back to school for a master’s in social work, then returned to Philadelphia in 2010 for a career that tapped a positive aftereffect of his treatment: empathy for sick children and their families. In 2016, CHOP’s department of family services gave him an excellence award to honor his tireless work helping families overcome health insurance obstacles.
Not long after that, his mother said, he complained about an unpleasant odor that persisted after he bought new shoes. He also had headaches that his primary-care doctor diagnosed as sinus infections, even though antibiotics didn’t help.
After several months of symptoms, Schiller had an MRI that led to the November 2017 diagnosis of a tumor rooted in his olfactory nerve. The malignant tissue was causing the odor.
“It was a very aggressive, difficult tumor that they don’t have clear ways to combat,” his mother said. “I think that no matter who did what when, it would have taken him.”
‘The only one who really understands’
It seems intuitive that childhood cancer would leave gaping psychological wounds. But research finds that isn’t necessarily so. The Childhood Cancer Survivor Study, for example, surveyed 1,100 adults who beat pediatric brain cancer, as well as their 2,800 siblings, and concluded that “cancer does not appear to contribute directly to increased psychological distress.”
Schiller maintained his equanimity even when his father was diagnosed in 2000 with an aggressive brain cancer.
“Michael was a senior in high school. Bob did say to Michael at one point, ‘I’m so sorry you have to go through this,’” his mother recalled. “Michael said, ‘Dad, you’re the only one in my life who really understands what I’ve been through. It makes us even closer.’”
Before Bob Schiller died in 2005, father and son were loyal volunteers with the American Cancer Society of Philadelphia, and both received the chapter’s “Slam Dunk Against Cancer” survivor award.
Fourteen years after losing his father, Schiller — in hospice care at his mother’s condominium — gathered with longtime buddies to reminisce, tease each other, and finally, speak from the heart.
“Michael’s turn came and he found the strength to make a declaration,” Aaron Wark recalled later at a memorial service. “He told us all of his faith in humanity, his belief in his loved ones, his gratitude for relationships he treasured, and his peace. Words so perfectly calibrated to make us feel better.”