Amy Dockser Marcus, pen in hand, seeks to turn back time for her cancer-stricken mother
By Staci Parks
In an instant, life changes. The most meticulously laid plans fall into the shadows. Our perspective shifts. Our true character emerges. The essence of our human spirit makes itself known in ways we never knew possible.
Amy Dockser Marcus will never forget her instant.
Sitting alone in the car outside her children’s elementary school in Newton, a suburb just west of downtown Boston, Amy’s sister, Lynne, delivered the news over the phone. Tears streamed down Amy’s face. She was conscious of the other carpool mothers, but hoped they wouldn’t notice. Her mother, Golda, had gone in for routine surgery. Now a week later, Lynne told Amy that their mom had been given a life-changing diagnosis of cancer — a potentially fatal gallbladder cancer.
Despite the tears, Amy felt oddly optimistic. As a journalist who spent much of 2004 writing about how a cancer diagnosis was no longer a death sentence, Amy possessed a keen awareness that even without a cure, cancer patients could now live longer, fulfilling lives. Amy would wipe away her tears, pick up her phone, call oncologists she knew and find an answer to save her mother. In a few short months, she would be awarded a Pulitzer Prize for her work on the health beat at The Wall Street Journal. Amy had this.
Between phone calls and research inquiries, Amy accompanied her mom to her oncologist’s appointments, a reporter’s notebook filled with data and questions in hand, determined to find an answer for Golda. It’s how Amy approaches every tough challenge in life — with the resolve of a veteran reporter, traits Golda had a fundamental role in shaping. Her mother never hesitated to encourage her to pursue writing. She stood behind Amy’s decision to work in the Journal’s Tel Aviv bureau as a foreign correspondent and provided strength to her daughter through the rigors of authoring two books on the Middle East.
But one day, after countless visits to the oncologist, Golda asked Amy to put away her pen and notepad. “Come to this doctor’s appointment as my daughter,” said Golda, “not as a reporter.” Without information, Amy felt powerless to help. “I had this amazing list of people who knew about cancer,” Amy says. “And I figured if anyone could find the person in this country who knows about gallbladder cancer and knows what’s happening, it’s me.” Amy had this.
AT PEET’S COFFEE & TEA in suburban Newton Centre, near where she now lives, Amy’s voice rises and falls in competition with the clink of ceramic cups and casual banter between baristas behind the counter. This is where she comes to let ideas percolate in her mind. Where perspective reveals itself through the hum of strangers’ life stories as they’re poured out three tables over.
It’s where, beginning in 2007, Amy came to ponder work and life as she traveled a six-year solitary journey — working weekends mostly, without a formal green light from the Journal — to tell the stories of families whose children have Niemann-Pick Type C, a rare genetic disorder with an estimated 500 cases worldwide. Most patients do not live past their teens. Peet’s is the place Amy chose to talk to one of the distraught parents, who faced watching their child lose the ability to move, speak and swallow. “It was a very solitary project for a long time, because, at the beginning,” says Amy, “I wasn’t sure what would happen. It wasn’t clear to me yet it would be a story.”
But there was groundbreaking research taking place on Niemann-Pick Type C, a cholesterol metabolism disorder, at the National Institutes of Health Chemical Genomics Center in Rockville, Maryland, and those afternoons at Peet’s and Amy’s endless hours of interviewing, researching and listening to families became 10 stories — more than 17,000 words — in an interactive, multimedia platform online and in the Journal.
The series, called “Trials: A Desperate Fight to Save Kids & Change Science,” ran in October 2013. She had spent five years of her life reporting the story by herself, following the heartbreak of families and their doctors. Of all the families she interviewed, she ended up following three main families closely. She spent another nine months writing (and continuing to follow the families). The Journal had never, in its history, run such a lengthy series.
“Trials” harmonized the voices of patients and scientists in a way that had never been done before. In the stories of both sides, Amy found a familiar ground. For the parents, it was simple: They were in a fight for their children’s lives. For the scientists: They were driven by the promise of their work, yet stuck in the traditional doctor’s way of doing things, which often slowed research and drug development that needed to be expedited. Amy, as a reporter, saw the possibility of a rare collaboration between parents and scientists on a child-
hood disorder with little hope. “I have found that very often, scientists choose experiments the way reporters choose stories: Something personal got them interested.”
“Trials” was Amy’s “passion project.” Reporters usually get one in life, that project we obsess over, pour our lives into, without knowing the outcome. Would the families continue to talk? Would the doctors? How would she balance her daily job at the Journal and her home life — a husband and two children — with the interviews and conferences she’d have to at- tend at night or on weekends? Would she ever have a story good enough for her editors at the Journal to come on board? How would she turn five years of reporting into a narrative? She wrote 25,000 words over the first nine months of 2013 while working with a team of videographers, photographers and editors, then she started in on the painful process of cutting 8,000 words, honing the story.
Amy’s persistence won the parents’ trust and faith. She listened in on phone calls between the parents and the scientists — on weekends, late nights, lunch hours. She’d show up at meetings of scientists at the National Institutes of Health, notebook in hand. Research on Niemann-Pick Type C and the journey of the two sides consumed her “free time,” she says. Her home office filled with cabinets and file boxes of notes about drug therapies, hope ignited and hope fading.
“I don’t think any of us understood that it would be such a long journey together. When they said ‘yes,’ I don’t think they necessarily understood it would be six years,” Amy says. “But I think the parents were very respectful of the fact I kept turning up. They could see it was something I took seriously. It wasn’t an article I was flying in and flying out on. I think when they saw the level of commitment that I had, and that the paper had, that, that helped them with being open to having me chronicle their journey.”
For her as a reporter, there were high points — the triumphs of promising discoveries — and the lows of attending the funeral of a young girl with Niemann-Pick Type C who Amy had followed.
Amy, of all The Wall Street Journal reporters, had the ability – in that moment – to merge the science of the story with the soul, helping her readers understand both sides. As a re- porter early in her career, covering the Middle East conflict out of Jerusalem, she had learned how to negotiate what she calls the “big intersection” between society and the personal, whether it was fighting in Lebanon, peace talks in Israel, or her own private journey into the history of the Arab-Israeli conflict. She had won a Pulitzer Prize for Beat Reporting in 2005 — one of the last awarded in that category — for her Journal story of cancer patients who had lived past their doctors’ diagnoses and the physical, financial and emotional implications. Most importantly, Amy had been on the other side herself, holding her mother’s hand through cancer treatments.
GOLDA CARPENTER met Bob Dockser in the early 1960s while living in Jerusalem as part of a yearlong study abroad program. Although Bob was only in Israel for a few months working for an American company, their paths crossed at a dinner party. Their host slyly invited both, thinking they would make a great couple. She was right.
Each summer beginning when Amy was 7, the family traveled back to the historic city, staying with the couple who had introduced Bob and Golda in their younger years. The annual treks from Boston to Israel helped Amy to understand the Middle East, giving her a larger perspective on the world and differences in cultures — a perspective that would prepare her for a job as a foreign correspondent there in her twenties.
Jerusalem is a city of immigrants and historical treasures, and the Docksers’ summer trips there piqued Amy’s interest in stories and storytellers. “Although, you don’t think about it when you’re a kid, I certainly know I felt like the world was a big place. I never thought it was just my little corner of it.” Amy remembers a different Middle East, one without the conflict and hostility of today. “A lot of time was spent telling stories,” she says, reminiscing. “It was a different time, a different period where people spent a lot of time talking to one another.”
Amy didn’t realize that her childhood trips to the Middle East would set in motion a career as a foreign correspondent in the Middle East. She felt it was important to learn to speak Hebrew and understand the culture of the region — a quest that provided plenty of lessons in humility. “When you’re immersed in a culture where you don’t speak the language — or you do but it’s not your native language — you learn to be humble,” says Amy. “You misunderstand things. You have to be able to laugh at yourself. I’m not afraid of making a mistake like that because it’s part of the adventure.”
In Israel, she also learned that the world’s complexities might be resolved by neighbors engaging in friendly afternoon banter. Amy wants to know the stories of the people she interviews, their perspectives, whether it’s a felucca operator along the Nile in Egypt or an American doctor at a medical conference. “Being a foreign correspondent teaches you the need to sit and listen — that people have long, involved stories, that it takes a lot of time to understand what they’re feeling,” she says.
THE SCREAMS OF PEOPLE in the street broke the peace of Purim. A suicide bomber in Tel Aviv had chosen the Hebrew holy day, March 21, 1997, to attack. Amy remembers the scene even today. What had been a holy day, a peaceful day, morphed into chaos at the hands of a suicide bomber. Amy can’t shake the images from that day. A policewoman clinging to a small, injured child about the same age as Amy’s 5-month-old daughter, Eden. The officer frantically searching for the girl’s mother, only to find that she, too, was one of the bomber’s casualties. As Amy watched the day’s events unfold, she felt despair. Her first six years as a foreign correspondent for the Journal in the Middle East, the early to late-’90s, had seemed like the region’s golden age. “There had been a hopeful period when the peace talk was going on that made me think that things could change,” she says. “And then this was a reminder that things weren’t necessarily going to change.”
Her mind raced to understand. How did it get to this? Was there a moment in time when things could have gone differently and there could have been a different path than the one that led to where we are now? Those questions — her need to understand the origin of the conflict — led her to write Jerusalem 1913: The Origins of the Arab-Israeli Conflict, published in 2007, 10 years after the suicide bombing.
Using the power of observation she learned as a curious 7-year-old in Jerusalem, Amy explains and explores complex topics by first understanding the characters and emotions behind them. She remembers being eight- months pregnant in 1996 with Eden, struggling through the narrow streets of Jerusalem with only her translator at her side. He would knock on random doors, seeking a bathroom for her. But the duo often walked away with much more than token hospitality: Those interactions, however brief, gave her the “in” she needed to understand the personal dynamics behind the region’s ages-old conflicts. “It’s a very family-oriented culture. For all of the disputes between Israelis and Palestinians and the different groups,” she says, “one of the things they all have in common is that their societies are all built on family.”
Conflict is a consistent theme in Amy’s work. From the deserts of the Middle East to the research labs of the National Institutes of Health in Maryland, she believes the only way to capture the gray is to immerse herself in a subject. “You can’t expect to understand societies that are built on traditions and conflicts that are deep and entrenched and took a long time to emerge,” she says. “You can’t expect to go in and understand that right away. The same thing with science. It’s a very traditional culture that’s built on rules, traditions and approaches over a lot of years,” says Amy. Amy works to simplify the complex and connect what others see as disarray. She’s a literary mediator. Her goal, always, is for readers to leave a story with an understanding of both sides. She searches for a common denominator, a piece of humanity to serve as a link between cultures and enemies, scientists and parents.
In “Trials,” Amy peeked past the stern, focused façade of the scientists researching Niemann-Pick Type C to unmask a rarely seen side of these men. She introduced readers to Dr. Forbes D. Porter, the government scientist tracking symptoms in the children, who liked to fish along the Chesapeake Bay in the spring aboard an 18-foot fishing boat. It was there, during his early morning expeditions, “when the water was still and clear as glass,” that his mind would relax. In upstate New York, Amy showed readers how Dr. Steven U. Walkley, a researcher who had worked on the disorder since the latter part of the 1980s, found solace in his garden by tending to blackberry, blueberry and gooseberry bushes, which he picked for jams. (He also kept fish heads tucked away in the freezer to re-create dishes from his child- hood in Mobile, Alabama, she learned.)
Amy long ago traded the narrow stone streets of Jerusalem for the pale green walls of her home office outside Boston. But regardless of her surroundings, she finds herself navigating society’s struggles. As a health reporter, she writes about people who often fall victim to rare diseases and disorders instead of suicide bombers. But Amy sees a link. Her optimistic nature pushes her to see horrific moments as preventable, not inevitable. Again and again, she asks, “How did it get to this point?” She sets out to answer her own question through research and asking yet more questions.
AMY LIVES IN A QUIET neighborhood in Needham with her husband, Ronen, and two children, 17-year-old Eden and 15-year-old Yuval. The snow line is disappearing along the manicured curbs in front of the Marcus’ light olive-green, split-level home. Amy walks into her home office, pulling out plastic bins and metal filing cabinet drawers to illustrate the extensive filing system she created for “Trials.” “There’s more downstairs,” she admits ruefully as she glances at two plastic containers stacked in a nook.
Above a caddy-cornered desk, there’s a caricature of Amy wearing a superhero’s uniform, wielding a pen and a notebook. Amy’s former editor Ed Felsenthal asked one of the Journal’s artists to create the drawing to celebrate her Pulitzer win. “That’s how I see you! Charging with your notebook and pen! To save the day!” he told her.
Beneath the cartoon is another take on Amy created by Eden at age 8 — the 10 need-to- know characteristics of her superhero mother, ranging from the opinionated (“My mommy isn’t funny. She can’t make me or my brother laugh.”) to the straight facts (“My mommy has two jobs, a writer and being a mommy! My mommy loves me!”).
Amy doesn’t see herself as a superhero — or even as a patient advocate despite a long list of fellowships to study health care and health policy, especially the role of patient advocates in driving drug development. In 2004, she received a Harvard Medical School Media Fellowship, where she focused on cancer treatment. In 2006, she received a Robert Wood Johnson Foundation Investigator Award in health policy research and a national media award from the National Down Syndrome Congress. She was a DART Center Ochberg Fellow at Columbia’s Graduate School of Journalism in 2009, doing research about traumatic stress. And for writing about health policy changes that could help patients, she also won the Hope Funds for Cancer Research Award for Advocacy that year — along with three top doctors in cancer research and treatment. Yet, in her mind, she is merely the reporter. “I don’t consider myself a patient advocate in the way that it is traditionally used,” she says. “An advocate argues, forcefully, one point of view. I don’t think I argue one point of view. I try to elucidate the complexity of the situation.”
Inevitably, she becomes involved in the lives of those she reports, however. Last July, three months before “Trials” would appear in print, Amy made her way to 19-year-old Dana Marella’s funeral. Because Dana’s Niemann- Pick Type C was advanced, the young girl was never a candidate for a drug trial. Amy had followed the Marellas and their two stricken children — Dana and 13-year-old Andrew — for six years. In the early stages of her journey, in November 2007, Amy had first met Dana’s parents, Phil and Andrea Marella, at a gathering of families with children suffering from the disorder as well as scientists and researchers.
Entering St. Catherine of Siena Church in Riverside, Connecticut, for the funeral Mass, Amy took in the number of people who’d come to pay their respects—familiar faces, parents who’d lost, or were losing, their children to the same disorder that had claimed Dana’s life. Amy thought about how difficult it must have been for them to attend the funeral of another child.
“It was so important to come hold Andrea’s hand and give Phil a hug,” Amy says. “It’s this notion of bearing witness. Not just reporters and storytellers, but all of us. We all bear wit- ness. That’s what it means to be a human being. Not to hold yourself to the side, even when it’s painful, even when you’re scared, even when it means making yourself vulnerable.”
No matter what Amy says, this isn’t the stuff of a typical reporter’s life. Working through thousands of pages of notes, scientific papers and documents she’d collected during six years to write “Trials,” she’s had to re-live every personal loss. But instead of getting lost in introspection, she found herself energized. Her dedication meant the stories of the families were going to be shared.
“You have to shape the material so that the story unfolds in a way that people connect with it, because people connect with their own humanity,” says Amy.
Amy knew that from her own experience.
IN THE NARROW SPACE of Columbia University’s Low Memorial Library, recipients of the 2005 Pulitzer Prize filed into the room. Most honorees are allowed only one guest. But Amy
had a cheering section — her mother and father, sister, husband and children. Her passion for family convinced the Pulitzer committee to waive their rule. “That was the best part about winning the Pulitzer Prize, was my mother,” Amy says. “That’s what I remember most about it. Everything else was a blur. Except her.”
At the time, Golda was receiving treatment for her gallbladder cancer from Boston’s nation- ally ranked Dana-Farber Cancer Institute. Her oncologist had explained that many patients choose not to use therapy. But given Golda’s underlying excellent health, young age of 62 when she was diagnosed, and the fact that she was willing to pursue a therapy, the doctor laid out a treatment plan. Amy had polled experts for answers and read every scientific paper she could find relating to the cancer in hopes of finding targeted therapies that could be applied to her mother’s diagnosis. She just knew a cure would be found. “The problem was, it didn’t take long to get up to speed because not a lot was going on,” Amy says.
Days, then months, then years passed, after the Pulitzer ceremony. Golda continued to do the things she loved. Every week, she played bridge with a group of friends she’d known for more than 30 years. Each Friday, she and Bob brought young Eden and Yuval home from school. Amy would listen from her home office, drawing joy from the laughter in the other room as Golda and Bob pretended to be different characters in her children’s games. Golda tried every chemotherapy option
presented to her. But as her health withered, there came a moment when Golda was more interested in quality of life. “That day, for her last conversation with her doctor, she chose to wear a bright spring hat, “ Amy wrote later in Health Affairs journal. “He complimented her on the hat. ‘It’s hard to give up,’ my mother told him.”
From Golda’s diagnosis in December 2004 until her final moments in May 2007, Amy continued to search for answers. “The whole process of watching her deteriorate, and then ultimately die, was wrenching for me and my family.” The fruitless search for answers humbled her. “There were no answers to find. You could research from now until forever and you still wouldn’t find the right answer to save her life.”
Golda did not like the limelight, but she recognized the power of storytelling. She had always encouraged Amy in her writing and often kept Amy’s children while her daughter worked on her books on weekend mornings. She trusted her daughter to tell her story in hopes that it would help another family experiencing the same struggle.
Today, the Dockser family still gathers, as they have done for years, for a Friday night dinner. Amy’s father, Bob, lives about a half hour away. Amy’s sister, Lynne, and her family live around the corner. Together, they talk about a little bit of everything over dinner, the accomplishments of their children or maybe Amy’s latest health care story. Golda encouraged the tradition.
One Friday, a few months before her mother died, Amy was cooking dinner alone and thought back to the kitchen-table discussions she had with her mother who argued against starting an advocacy group because she wanted to spend the time she had left with family. “As her daughter, I cannot regret that choice — especially now, when I think about how much those Friday night dinners meant to me and my children,” Amy wrote in Health Affairs.
After Golda’s death, Amy channeled her curiosity and determination into “Trials” and other projects. “Even though I’ve spent a lot of time with people who are confronted by very sad situations, I find that the current of life is a very powerful force — the will to live. It’s so elemental.” Being around patients trying to extend their lives, “to enjoy it, to embrace it,” is “in some ways, not sad at all,” says Amy. “It’s inspiring.”