From Bethesda Magazine: Collaborating for a cure to pediatric brain cancer

A Silver Spring family turns a diagnosis into a foundation that raises millions for research

January 17, 2025 3:00 p.m.

It was September 2009, and Nicole and Mike Giroux knew something was amiss. For days, their 15-month-old daughter, Lila, was having trouble standing, even though she had started walking a couple of months earlier. Her breathing had become labored. Mike noticed that she was balling up her little hands into tight fists. 

Suspecting a respiratory problem, a pediatrician told the couple to take Lila for a chest X-ray, Nicole says, but the imaging came back normal. Even a trip to the emergency room at Holy Cross Hospital, near their Silver Spring home, didn’t yield definitive answers. A physician there predicted that Lila was anemic, Mike says, and ordered her little body to be pumped full of vitamins via IV. But by the next morning, she was doing even worse. 

“It’s definitely not anemia, I’ll tell you that,” Mike remembers saying to his wife. 

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The couple decided to take Lila back to the pediatrician. But on the way, they recall agreeing: We know this is something more serious.

While Mike drove toward the doctor’s office, Nicole called the neurosurgery department at Children’s National Hospital in Washington, D.C. They’d met with a doctor there months earlier, shortly after concerns surfaced that the circumference of Lila’s head was larger than typical. The verdict at the time was nothing alarming, Nicole says. Now, though, the department’s receptionist suggested they bring Lila in for imaging right away. 

After a CT scan and an MRI, the couple received a diagnosis: Their little girl had a cancerous tumor that had spread to multiple locations in her brain and spine. Surgery was scheduled for the next day, so the couple hurriedly arranged for their two mothers to take care of their 4-year-old son, Braden. 

The Girouxs didn’t leave the hospital for a week. After Lila was discharged, the family endured another couple of weeks waiting for the final pathology report and a treatment plan to be put into effect. Nicole says that the diagnosis was “completely terrifying” and made worse because the doctors didn’t know how exactly to classify the tumor.

The doctors ended up recommending a “concoction of chemotherapies” rather than a “standard protocol,” Nicole says. “There was no proof of concept … no data.” They just thought that combination would work best based on what they knew at the time, she says.

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Frightened by the unknown and fearing the worst, Nicole made a pledge to Mike the night they brought their daughter home from the hospital following the surgery: She would dedicate herself to raising the money necessary to advance research and treatments for pediatric brain cancer. “I don’t want anyone else to feel the way I feel right now,” she recalls telling Mike as they tucked Lila into bed that night. She told him that one day she would “make a difference [and] change outcomes,” if not for their family, then at least for others. 

Today, Lila is a thriving 16-year-old sophomore at Connelly School of the Holy Child in Potomac. Braden, 19, is a freshman at Wake Forest University in North Carolina. Mike, now 50, is director of defense and intelligence programs at Cribl, an IT and data security company, and Nicole, 50—a former event planner—is a game changer in the world of pediatric brain cancer research. 

As executive director of the Lilabean Foundation, the nonprofit she and Mike founded three years into Lila’s cancer journey, Nicole’s mission has been to help fund research into pediatric brain cancer and to encourage collaboration among institutions around the world so new discoveries and treatments can get to market faster. “We’ve seen great advances … [especially] in the last [few] years because of the collaborative research that’s going on,” she says.

Using the nickname the Girouxs gave Lila as a baby, the Lilabean Foundation has provided the scientific community with more than $6 million since its inception in 2012, according to Nicole.  “Where the federal funding is lacking,” she says, “organizations like Lilabean are filling the gap.”  

The Lilabean Foundation “identified the issue that if researchers keep working in [silos], we cannot overcome the complex problems” involved in pediatric brain cancer research, adds Jena Lilly, executive director of the Children’s Brain Tumor Network (CBTN), which she says has received nearly $1.5 million in funding from the foundation since 2017. Thanks in part to the Lilabean Foundation’s collaborative efforts, the CBTN has nearly 5,900 patients enrolled in its studies, Lilly says. When the program began 11 years ago, it had 120.

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More than 5,000 children in the U.S. are diagnosed with pediatric brain cancer each year, according to the California-based Pediatric Neuro-Oncology Consortium Foundation (PNOC). That translates into more than 13 children a day getting a brain cancer diagnosis. It is the leading cause of disease-related death among children and young adults ages 0-19, according to the CBTN, which estimates the median age of death from a brain tumor is only 9 years old. It is second only to leukemia as a cause of pediatric malignancies, according to the National Institutes of Health.

Yet pediatric brain cancer receives only about 1% of federal research funding, according to PNOC, and treatments designed for childhood brain cancer lag well behind those for adult versions of the disease. The Children’s Cancer Foundation reports that pediatric cancers, especially involving cancers of the brain, lag nearly two decades behind their adult counterparts. 

Dr. Brian Rood, medical director of the Brain Tumor Institute at Children’s National Hospital, says he suspects that the overlap in biological drivers in adult brain cancer and pediatric versions is less than 10%. 

“There are many unique things about pediatric cancer that are completely different from adult cancers that warrant completely different lines of investigation,” he says. But “the pharmaceutical industry, which is a profit-driven industry, is going to develop drugs where there is a market for those drugs, [and] pediatric cancer is thankfully rare.”

Rood is one of the Lilabean Foundation’s three scientific advisers. He’s also Lila’s neuro-oncologist. By and large, he says, “adult cancers are the result of an accumulation of DNA damage from our lifestyles … and the fact that our genomes are mutable, and given enough years, you’re going to get a mutation someplace, whereas in pediatrics, the general theme is developmental pathways going awry.” 

Lila’s pathology report showed that she had infiltrating glioma, a type of tumor that causes glial cells—the cells that normally    help the central nervous system work—to grow out of control. It’s one of more than 120 known molecular types of pediatric brain cancer, Rood says. 

Within weeks of her diagnosis, a port was placed in the toddler’s chest and Lila began years of on-and-off chemotherapy to shrink the masses that were inoperable. When her cancer progressed in 2015, she qualified for a clinical trial of an oral chemotherapy drug that stopped the tumor from growing. And in 2019, when her cancer progressed again, she was eligible for an FDA-approved combination of drugs that stabilized her situation once more. 

Both treatments involved pills, rather than IVs, with far fewer side effects than traditional chemotherapy or radiation. According to the American Cancer Society, most side effects of chemotherapy on children with brain cancer are short-term and include nausea, fatigue and hair loss. But radiation comes with an extensive list of long-term side effects, including loss of brain function, emotional issues, seizures and hair loss that can be permanent, depending on the dose, according to The Brain Tumor Charity, a global fundraising organization based in the United Kingdom. 

“We are over the moon that she never had to do radiation, because she’d be a very different girl,” Mike says. 

Lila says she was at a sleepaway camp this past summer for kids with pediatric brain cancer. “A lot of people couldn’t walk, so they were in wheelchairs; a lot of people were visually impaired,” she says.

Today, Lila’s cancer is considered stable, and she is not on any cancer treatments. She goes back for scans a couple times a year, but unlike when she was a kid and needed anesthesia for the procedure, she now listens to her favorite pop and Christian music, and sometimes relaxes so much she falls asleep in the machine. “I’ve been doing it for so long that I’ve just been getting used to the routine,” Lila says. “I’m just happy to be here and grateful to be healthy.” 

Braden says her positive attitude has helped her handle the ups and downs of living with cancer and also inspired those around her. “[She] never let all the unfair things she had to do just because of a bad draw weigh her down or ruin her mood. She accepted it for what it was and powered through,” he says. She “not only changed my life for the better … but many other people as well, and obviously, with the foundation, so much good has come out of it.”

The Lilabean Foundation was never just about Lila’s tumor, but rather about eradicating all types of pediatric brain cancer, Nicole says. “A lot of organizations … will fund a specific type of research for the specific type of brain cancer,” but the Lilabean Foundation has a broader vision, she says.  

The organization’s website presents nearly two dozen “hero stories” of children with different types of brain cancer. Several are in the throes of treatment, others are in remission, and some are children who have died—a few before the Lilabean Foundation existed. What ties the children together—other than brain cancer itself—is their families’ hope that their child’s story will encourage people to contribute money to research that will one day help find a cure for the disease.

“I don’t see our involvement in [the Lilabean Foundation] ever changing, you know, until a cure for pediatric brain cancer is found,” says Chevy Chase’s Alyssa Zachmann, whose 9-year-old daughter, Kasey, has had a hero story on the foundation’s website since shortly after she was diagnosed with medulloblastoma more than three years ago. 

Medulloblastoma is the most common type of cancerous brain tumor in children, according to the Mayo Clinic, which estimates that 30% of kids who are diagnosed with it will die within five years. The Medulloblastoma Resource Network estimates that 75% of medulloblastomas occur in children younger than the age of 10. 

When Kasey was diagnosed, people asked the Zachmanns for an organization they could donate to that would help the family. “Then we found Lilabean,” Alyssa says. “It’s this incredibly impactful organization that is focused on the thing that matters most to us, and that there’s such a critical need for.” 

Kasey’s diagnosis came shortly before she started kindergarten. The little girl underwent surgery, then chemotherapy and radiation that doctors hoped would keep the cancer at bay, but it reoccurred less than a year later. She then participated in two clinical trials that the Zachmanns say were not successful. Since November 2023, Kasey has been on what her dad, Joe, calls “a somewhat absurd cocktail of random adult chemotherapies.” 

“Thankfully for Kasey, it provides stability,” Alyssa says. “Her tumors are not currently growing, but it’s not meant to cure the cancer, and at some point it’s going to stop working, or her body is going to just sort of not be able to tolerate it anymore.” 

The Zachmanns say they have started to see in Kasey the effects of the disease and the impact of years of intense treatment. The fourth grader tires easily, needs help getting on and off the school bus and takes the elevator rather than the stairs at school. “She probably isn’t going to learn how to ride a bike, things that require balance,” Alyssa says.

As a third grader, Kasey was able to keep up with the other students in her after-school dance program and perform with them at their recital, but this school year the instructors had to create a separate arrangement for Kasey that was simpler and with fewer physical requirements. “It’s just … a lot harder for her to move and get around,” Alyssa says.

Some progress has been made in terms of less toxic treatments for children, Rood says, but significant funding is needed for the pace to really speed up, and it will likely not come from the federal government or the pharmaceutical industry. 

“We’ve done all that we can do with radiation. … We’ve [used chemotherapy drugs] in different combinations, we’ve played with the [dose and] dosing schedules,” he says. “We’ve done pretty much everything we can do and we’ve walked right up to that line of unacceptable toxicity and our survival rates still are not significantly greater than they were 20 or 30 years ago.”   

Nicole says several pharmaceutical companies have pledged in recent years to pursue pediatric cancer drug development, and in the past year, two drug regimens have been approved by the FDA for use in one type of the disease: pediatric low-grade glioma. “A cure is what we want … but we’re not going to get right to a cure,” she says. “First we’ve got to get to understanding the disease better, and the biology, and then, you know, the molecular underpinnings to get more specialized treatments.” 

Zachman family of four outside
Chevy Chase’s Kasey Zachmann, 9, (top left) was diagnosed with medulloblastoma three years ago. She is pictured with her sister, Zara, and parents, Joe and Alyssa. Photo by Skip Brown

By the time of Kasey Zachmann’s diagnosis, the Lilabean Foundation had grown from a grassroots organization hosting events in the Girouxs’ backyard to one whose annual Fall Ball—its gala fundraiser held every November for the past 13 years—has outgrown the event space in many of the region’s country clubs. (Its 2024 Fall Ball was held for the first time in Washington, D.C., with 500 people in attendance, a hundred more than the previous year.)

At the 2023 Fall Ball, Alyssa and Joe took home an award for courage in Kasey’s honor. The award was named in memory of a 3-year-old Maryland boy who died of brain cancer in 2013. At the 2024 event, Kasey’s story was part of a video focusing on families’  ongoing struggles with the disease. “I can’t go 30, 40 more years and [see this disease] continue to ravage kids and families like this,” Joe says. “What I need is for that to not be the reality anymore.”

In 2023, the foundation raised more than $1.2 million and added nearly 800 first-time donors to its roster, according to the organization’s 2023 impact report. Nicole expects 2024 numbers to be even higher. “There’s been a lot of blood, sweat and tears over the past 13 years, and I absolutely feel confident that it’s made a difference,” she says.

Braden says he still doesn’t think childhood brain cancer gets the attention it deserves, but he believes the Lilabean Foundation has been as impactful in raising awareness as it has been in raising research funding for the disease. 

“Every single year is more money being raised, more [is] being done … to hopefully help these children and provide better treatment options,” he says. “More people are starting to realize, you know, the weight of the issue.”  

Amy Halpern has worked in print and television news and as the associate producer of an Emmy Award-winning documentary. She lives in Potomac.

This appears in the January/February 2025 issue of Bethesda Magazine.

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