“We Cannot Waste a Single Day”

For children with brain tumors—and for their families—the struggles that come after a diagnosis can be unimaginable. Candice Dyer explores how some parents are lightening the burden for those who will come next, whether by establishing a biorepository for scientists, lobbying for more research dollars, or simply helping a family with its bills.
Phil and Cheryl Yagoda
Phil and Cheryl Yagoda

Photograph by Neda Abghari

Last summer, ten-year-old Ian Yagoda miraculously caught not one, but two foul balls during a single Braves game at Turner Field. Then he turned and magnanimously handed one of them to another boy, a kid he did not know, in the stands. “He wanted it, so I gave it to him,” Ian says. “It made him happy, so I’m glad I did.”

Ian’s voice is soft, measured, and taffy-like, with just the slightest Southern accent that suggests northern-arc Atlanta. He has always lived in Sandy Springs. His teachers praise his gentle manners. In contrast, his father, Phil Yagoda, a Long Island native and finance specialist, communicates in the urgent, staccato tempo of the traders hustling on the floor of the New York Stock Exchange. “I’m not easy to work with,” he says bluntly. “I try to be nice and not be an ass, but I am very direct in my approach. And when it comes to saving my kid”—he strikes a boxer’s pose—“I’m like, ‘Put ’em up!’ ”

Yagoda caffeinates his pace further with every glance at the clock. When Ian was two, he was diagnosed with an inoperable brain tumor. Aside from some delayed motor skills early on—the symptom that red-flagged the attention of his mother, Cheryl—Ian’s health has remained relatively stable with treatment. He pinballs around the grown-ups as he plays basketball and dreams of becoming “an NBA all-star or a jet pilot.”

Ten-year-old Ian Yagoda in his bedroom, surrounded by some of the stuffed animals he's collected from hospital visits over the years. That's his guinea pig, Honey, next to him.
Ten-year-old Ian Yagoda in his bedroom, surrounded by some of the stuffed animals he’s collected from hospital visits over the years. That’s his guinea pig, Honey, next to him.

Photograph by Neda Abghari

“We cannot afford to waste a single day,” his father says. “If a treatment is not working, then the cell counts could drop too low to apply a different treatment in time. Parents in this situation literally live from MRI to MRI. The night before one of those, I usually throw up and fall apart, and my wife becomes the rock. I want to do all I can to make sure no other parent ever hears those words that turn a family’s life upside down: ‘We think we found something.’ ”

Yagoda, like others in his predicament, has undergone the kind of excruciating, high-stakes education that no one wants. Parents of children with brain tumors typically can rattle off mouthfuls of medical jargon with the fluency of a veteran Mayo clinician, particularly the unwieldy names of promising pharmaceuticals and where they stand in clinical trials. One fundamental lesson Yagoda learned early on is that scientists in this small field—there are only around 100 practicing pediatric neuro-oncologists in the country, and most of them know each other—often struggle to acquire not only funding but also a steady supply of living cancer cells for experimentation. Traditionally, excised tumors are “banked,” or frozen, if they are kept at all. Toward that end, in 2007, the family established Ian’s Friends Foundation, which supports innovative research projects at institutions nationwide, including local laboratories that have achieved some hopeful breakthroughs.

“After years of traveling all over the place, we found the lack of available cells for research remains a huge roadblock to finding the cure or developing new treatments,” says Yagoda, a managing director for Deutsche Bank. “I finally said, ‘Screw it—we’ll just start our own collection.’ ”

So at the beginning of this year, he established the Ian’s Friends Foundation Brain Tumor Biorepository at Children’s Healthcare of Atlanta. The idea, he says, is to foster greater variety and collaboration with as little red tape as possible. “There’s not a lot of sharing in scientific research, which is very territorial and profit-driven, and the government tends to fund only what’s already established,” he says. “We’re looking for novel, outside-the-box approaches, and we keep the application process from being too onerous. There are other biorepositories out there, but they might claim as much as 50 percent ownership of whatever profits come from them. With us, a researcher just has to make a case for an idea. We’ll give him or her cells with an easy material transfer agreement for essentially the costs of shipping and handling, which are only around $50 or $75.”

The repository not only stores tumors, but it also grows new ones from the acquired tissue samples. “This biorepository takes us in a new direction,” says Dr. Tobey MacDonald, director of the Pediatric Neuro-Oncology Program at Children’s Healthcare of Atlanta and Emory University. Both a practicing physician and a researcher, he relocated five years ago from Washington, D.C., in part because of the number of patients in Atlanta. With as many as 150 diagnoses annually, we are in the top five in the country, creating a large patient pool to study in a city equipped with sophisticated labs at Emory and Georgia Tech. Much of the Southeast remains underserved by research hospitals, so Atlanta functions as a hub for patients from all over the U.S.

“Some parents are creeped out, for lack of a better word, at the idea of their child’s tumor being kept ‘alive,’ and I can understand the pain in that,” MacDonald says. “However, we need to learn what causes a tumor to grow, to identify those ‘driver’ mutations in order to find ways to stop it.”
In 2012, the Children’s Oncology Group, the world’s largest organization of researchers in this field, designated Children’s Healthcare of Atlanta as a site for Phase I drug trials—an acknowledgment of the caliber of care here as well as the size of the patient population. That status means the patients with the worst prognoses for survival have access to treatments that are still in the experimental phase. “I try to be honest but also leave room for hope when I meet with patients,” MacDonald says. “There’s no reason that their child might not be the one who beats the odds.”

The brain is the most complex and mysterious organ in the body, with an estimated 86 billion neurons controlling the nervous system, hormone production, and the five senses, as well as that more abstract faculty: the mind, the seat of consciousness. Even a heart can be transplanted, but no pig valve can replace the exquisite coils inside our skulls. A child’s brain proves especially delicate because it has much unfinished business, choreographing the development and maturation of the body. Hippocrates wrote, “Men ought to know that from nothing else but the brain come joys, delights, laughter, and sports, and sorrows, griefs, despondency, and lamentations.” The five neuro-oncology specialists who conduct research and treat patients in Atlanta are striving for more joy and fewer sobs of lamentations in their hallways.

 

Maranda Martin at her grandmother's house, where she's been spending time since her son Brayden died in September. She keeps a box of keepsakes close by: a plaster cast of her son's hands, a pair of his sneakers, and some portraits of him at age five, courtesy of Flashes of Hope, a nonprofit organization that creates uplifting photographs of children fighting cancer.
Maranda Martin at her grandmother’s house, where she’s been spending time since her son Brayden died in September. She keeps a box of keepsakes close by: a plaster cast of her son’s hands, a pair of his sneakers, and some portraits of him at age five, courtesy of Flashes of Hope, a nonprofit organization that creates uplifting photographs of children fighting cancer.

Photograph by Neda Abghari

Maranda Martin has plans to donate her seven-year-old son Brayden’s tumor for research. “I want them to kill it, but first I want them to torture it,” she says. “It’s been torturing my son for years.”

She is glancing around the halls of Scottish Rite, with its Crayola-inspired scheme of primary colors. Surgeries take place at both the Egleston and Scottish Rite campuses of Children’s Healthcare of Atlanta. Long-term and rehabilitative care is handled here, where bald children—sometimes in scarves or tiny ball caps, and clutching security blankets with Spider-Man or Dora the Explorer themes—patrol the halls in tricycles, little red wagons, and plastic cars, all tethered to IV drips. Kleenex boxes sit discreetly within reach in every corner. “This place is a war zone for children,” Martin says bitterly.

In the fluorescent lighting of the hospital break room, she looks puffy around the eyes from weeping, which she is careful to do outside of Brayden’s line of vision. She has trained herself to catch fitful naps on the backache-inducing cot in his room. He had gone home to Norcross for hospice, but complications from pneumonia have brought him back here, and she knows she will never carry him out of this place alive.

Brayden was almost three when he was diagnosed with anaplastic medulloblastoma, classified as a “fast-growing” tumor of the cerebellum. “Survival rates are a little better if they’re at least four years old,” she says, recounting his disease history by dates, treatments, and cruel ironies, “and if they can go five years without a relapse, that’s usually a sign that the worst is over. Usually. If they have even one relapse, though, they probably won’t make it, and six out of ten will relapse. Brayden relapsed five times. I don’t ever want to hear the word relapse again once this is over.”

She dabs at her eyes and recalls his diagnosis in a monotone.

“He kept throwing up, and his little body just wasn’t digesting food,” she says. “Initially, some of the doctors treated me as if I were stupid. They were testing him for diabetes and gluten intolerance, but I sensed that something different, something worse was going on. Finally, a radiologist said, ‘Why aren’t we looking at his brain?’ So they did a CT scan. We were singing ‘Twinkle, Twinkle, Little Star’ to him when we looked up and saw them reading the results. And their faces all fell at the same time. We just knew. My mother started crying. We didn’t leave the hospital for two months after that. That was the beginning.”

Most of the anecdotal patient histories in this hospital wing follow a similar narrative. The child exhibits headaches, vomiting, a lazy eye, poor balance or coordination, persistent drowsiness, or other vague symptoms that could mean nothing or everything. Pediatricians and general practitioners in the first line of defense often seem clueless and cavalier, at least in retrospect—a little too quick to downplay the anomalies, despite the mother’s foreboding intuition and rising panic. Parents learn to read the body language of medical professionals, to scrutinize facial expressions. They watch their child make and then lose best friends in the ward, and they see kids with the same type of cancer improve while their child gradually loses the ability to toddle, pedal, and speak. Of course, when their child is asleep, they pore over the Internet, where they discover a welter of contradictory information and pseudoscience.

The first clump of hair usually comes out in the tub. “There’s just no good way to prepare a parent or a child for the hair loss,” says Tammy Bates, shaking her head. “It’s a dizzying whirlwind of a ride once that diagnosis is made.” She lost her son Brody when he was eight. “Families need all of the support they can get, even for little things that the average person doesn’t think about: utilities, transportation, rent. Usually at least one parent ends up leaving a job because caring for the child takes over all time and energy. They may live far from a hospital. Families can end up shattered or physically displaced on top of everything else.”

Like a surprising number of surviving parents, Bates continues to work in the emotional eye of the storm, serving as director of Patient and Family Services for the Brain Tumor Foundation for Children, which is the country’s oldest organization dedicated exclusively to pediatric brain cancer. Formed in 1983, it primarily handles financial and social support for struggling families, but it recently merged with the world’s largest nonprofit backer of research, the Pediatric Brain Tumor Foundation, further enlarging Atlanta’s regional and national profile in battling this disease.

“A culture of foundations and nonprofits, often started and staffed by parents, has sprung up—both to help other families and to fund research,” MacDonald says, “because this disease is largely underfunded compared to others.”

Among all diseases, cancer remains the leading cause of death for children in the U.S., and brain tumors are second only to leukemia as the most common form of the disease. However, only about 4 percent of government funding for research is earmarked for pediatric cancers—a source of much resentment in the children’s wards. “[Pediatric brain tumors] get something like a penny for every dollar directed toward other cancers,” Martin says. “Yet cancer organizations are always happy to use pictures of our bald children to tug at people’s heartstrings in their campaigns. We just don’t get a very big slice of the pie.”

Adds MacDonald, “I tried to lobby politicians at one point. We used the ‘loss of productivity’ argument, trying to appeal to the American work ethic, to no avail. We’ve made great strides in treating childhood leukemia. We’ve brought the survival rate way up in the past twenty years, and that’s largely because people threw a lot of money at it. We need a similar outpouring for this disease.”

Mary Moore, executive director of the Brain Tumor Foundation for Children, says losses tend to come in waves. “We lost three or four children in a couple-week period. It’s just horrible.” But the knowledge that her foundation is a help to families—whether it’s in the form of logistical, financial, or emotional support—is a motivator. “When you go to the hospital room, and you see what they’re going through, you leave saying, ‘Man, we have got to work harder.’”

 

Cancer financials entail, in novelist Henry James’s phrase, a “terrible algebra” of suffering. Around 4,300 children and teens were diagnosed with primary brain tumors in 2013. “Pharmaceutical companies are driven by numbers, and so far there haven’t been enough statistics around pediatric brain tumors to convince them that they could make a large enough profit, at least when compared with other diseases,” MacDonald says, echoing others who yearn for some equivalent of an ice bucket challenge or pink ribbon campaign for awareness and fundraising. According to the Central Brain Tumor Registry of the United States, which is funded by the Pediatric Brain Tumor Foundation, more than 28,000 children and adolescents (age zero to 19) in the U.S. are living with a malignant or nonmalignant brain or central nervous system (CNS) tumor. CBTRUS estimates that of the children between the ages of zero and 19 with a malignant tumor, 540 will die of their disease in 2014.

“I don’t understand why this isn’t better supported,” says Yagoda, who knows all about crunching numbers to build a case. “Is it because kids don’t vote? And if it’s a matter of math, even if only a few thousand children are diagnosed, if they all were able to grow up and have children and grandchildren, then it quickly translates into a ‘5 million people affected’ problem. I don’t get it.”

Many parents, in the meantime, turn to social media for financial and emotional assistance. “I didn’t have a car, which I desperately needed to get him to appointments,” Martin says. “I put that out there, and a friend of a friend at a dealership gave me a car. A foundation gave me some gas cards, too. You learn to juggle among different groups, but money is always tight everywhere.” She has also used social media to raise money for Brayden’s funeral and headstone.

Martin once worked as a preschool teacher. (“I’ve always loved kids,” she says wistfully.) Since Brayden’s diagnosis and the ensuing departure of her husband, she has gotten by on a small Supplemental Security Income check. A year after the diagnosis, she realized she was pregnant again; she eventually gave birth to Brayden’s little brother, Mason. “I don’t know what I would have done without social media,” she says. Her Facebook posts tell a story in the pattern of an anguished seismograph: pleas for prayer; gratitude for small victories; crushing setbacks; photos of Mason grinning while Brayden hams it up, playing air guitar; and now, an ongoing stream of condolences. Brayden died in September.

“I can’t think of my son as a statistic—I hate statistics,” she says, explaining how she intends to keep volunteering in this “war zone,” where kids learn to receive shunts, catheters, and IVs without fidgeting. “I’ve gotta find a reason for this. There’s just gotta be one somewhere,” she says. “Besides, I know all the lingo and how to work every medicine-delivery pump in this place by now. I don’t know what else to do with myself.”

Yagoda, too, copes by channeling his fear into round-the-clock action. Among the initiatives supported by Ian’s Friends Foundation is the Tumor Migration Project, which focuses on mobility. Biomedical engineers at Georgia Tech, Emory, and Children’s Healthcare of Atlanta have deduced how to nudge a tumor out of inoperable interior spots to safer sites for extrication or targeted therapies. The proposal won the coveted EUREKA award (Exceptional Unconventional Research Enabling Knowledge Acceleration), which includes a $1 million grant from the National Institutes of Health. Advances in nanotechnology, dyes used to delineate cancer’s borders more precisely, electrical stimulation, and other tumor-shrinking and inhibiting approaches also are showing promise.

Ian, the boy who gives away baseballs and other toys, has not directly benefited from these procedures yet, but he might some day.

“My fantasy, my dream,” Yagoda says, “is that this has all been a horrible mistake, a misdiagnosis. That my son isn’t really sick, but that we were meant to be shaken up enough to help other families by stamping out this problem. Our foundation’s motto is ‘until there’s a cure.’ We simply won’t rest until then.”

 

Help out
On October 25, Ian’s Friends Foundation hosts the seventh annual Evening of Inspiration at Loews Hotel in Atlanta.

On November 8, the Pediatric Brain Tumor Foundation hosts Starry Night at Centennial Olympic Park, an 8.5K walk/run to raise money for the foundation and to draw attention to the 28,000 American children living with brain tumors.

More: Read Steve Fennessy’s editor’s note on how the idea for this story began

This article originally appeared in our November 2014 issue.

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