Glioma Warriors

On a sunny June day, Olivia Leow was driving her sons to a friend’s swimming pool when she briefly lost her peripheral vision. Later that afternoon, while watching them splash about in the water, her right hand temporarily went numb. 

After some online research that evening with her husband, she figured she had experienced an aura, the warning signs of an approaching migraine, but the symptoms returned. Hospital evaluations determined she had a glioma, medical parlance for a brain tumor. 

Her diagnosis occurred in the prime of her life as a mother with two young sons and a busy career as executive director of the Rotary Club of Nashville. Glioma is a cancer that afflicts people of all ages, including children. It is the deadliest pediatric cancer, and it’s also perplexing, evading the advances made in recent decades for other cancers.

Janet and David Greene, of Knoxville, Tennessee, know the frustration of the slow pace of treatment advancements. It’s been 30 years since their son, Michael, died at age 16 from glioblastoma, the deadliest form of glioma. So does Leslie South. She lost her husband, Eric, in 2023 to the disease. They and Leow have formed an alliance to raise funds for Vanderbilt-Ingram Cancer Center to establish a preeminent Brain Tumor Center that will hasten discovery, expand clinical trials and train glioma specialists. The overarching goal is to develop better treatments and to make care more accessible. 

 “This is not a bricks and mortar project; it’s bringing together a group of like-minded people at the top of their fields and allowing them to collaborate to address this vexing problem of brain cancer,” said Reid Thompson, MD, the William F. Meacham Professor of Neurological Surgery and chair of Neurological Surgery. 

There are different types of brain cancer, and the most common type is metastatic disease from another type of cancer that originates elsewhere in the body. Researchers have made progress in treating some of these tumors. 

“A relentless focus on research has absolutely moved the dial and flipped the switch on certain types of brain tumors; I’m talking about melanoma,” Thompson said. “When I was a resident back in the 1990s, if a patient came in with metastatic melanoma to the brain, that was a death sentence. Survival was measured in mere months. A brilliant group of people made it their life’s work to understand and unravel the biology of melanoma. Through a lot of philanthropy and federal funding, this research led to a better understanding of melanoma, and specifically a recognition of the biology that drives melanoma. From that came drugs specifically targeted to melanoma.” 

Vanderbilt was one of the leading cancer research centers conducting clinical trials for new melanoma treatments – treatments so effective that former President Jimmy Carter lived to be 100 after recovering from melanoma that had metastasized to his brain.  

But gliomas, which originate in the brain, have not had a comparable research focus or treatment successes. One reason may be that glioma is a rare cancer, with an incidence rate of just 6 cases per 100,000 people. 

“The vision is to create a center that will include imaging scientists, basic biologists and chemists to design drugs rapidly and screen them,” Thompson said. “This will include neuro-oncologists, who are clinical trial leaders, and researchers who can take discoveries from the lab and rapidly translate them to patients and do that at a pace that’s fast.” 

This emphasis on glioma occurs during an inflection point for cancer, when new treatment modalities — such as immunotherapies, nanoparticle delivery and CRISPR technology — show promise for greatly improving survival rates and bringing about cures. 

Olivia Leow’s story 

It was Father’s Day, Sunday, June 20, 2021, when Leow had the symptoms that led to her diagnosis of astrocytoma, a glioma that develops in the astrocytes, which are star-shaped cells in the brain. That week when the symptoms returned, she called her doctor who advised her to go to an emergency room. She took her laptop along, not worrying too much and thinking she could get some work done while waiting to be seen. 

The emergency room physician ordered an MRI of her brain, listed what the suspicious imaging might be, and then told her it was most probably a tumor. 

“It was like I’m in a movie,” Leow said. “I just kind of blacked out and didn’t hear anything. Then he read it again, and that’s when it settled in.” 

She was hospitalized, underwent more testing and learned that she needed an awake craniotomy. The hospital recommended that she travel to California for the procedure, but with two young children, she immediately worried about the logistics of traveling so far for treatment. Friends and acquaintances who heard about her predicament kept recommending that she go to Vanderbilt and see Thompson. 

“He was phenomenal,” she said. “I felt so sure after the first time that I met him that this was where I needed to be.” 

She asked if she could wait for the surgery long enough to walk beside her 5-year-old son on his first day of kindergarten. Two weeks afterward, she was in the operating room. Thompson asked her what music she wanted to hear during the procedure. Leow told him he could decide. He turned up the Eagles. (She later organized a karaoke fundraising event for the brain cancer program at Vanderbilt, and Thompson sang “Take It Easy.”) 

“It was pretty wild; I was awake for the majority of it,” Leow said. “I was talking. I was reading. I was telling stories. They wanted me to be continually talking and thinking and reading. I even called my husband in the middle of it.” 

She spent one night in the ICU and went home the next day. Within a week, she was at her son’s T-ball game. Her treatment proceeded to 26 rounds of radiation followed by six months of taking an oral chemotherapy under the care of Ryan Merrell, MD, associate professor of Clinical Neurology and division chief of Neuro-Oncology. 

Now, she sees Merrell every four months to make sure the glioma has not recurred. Glioma is a stubborn cancer with a very high recurrence rate. Survival rates vary according to the type of glioma, the tumor grade, the age of the patient and other factors.  

“I talked to Dr. Merrell at one of my last visits about if the cancer comes back what do we do next. He mentioned that there’s a new drug after a successful clinical trial. It is for my specific tumor, down to the mutation type. It would be an incredible life-extending drug. That matters so much to me. Obviously, I want to live as long as I can. I want to be the mother of my children for as long as I can. That’s what I pray about — to be the mother of my children. I want to see them grow up and get married and have babies.” 

In August 2024, the Food and Drug Administration approved vorasidenib for Grade 2 astrocytoma or oligodendroglioma with a susceptible IDH1 or IDH2 mutation. It was the first drug the FDA had approved for the disease in 20 years. However, there have been no new drug approvals for glioblastoma for an even longer time. 

Michael Greene’s story 

Michael Greene was a trumpet player, strikeout pitcher, exceptional student and only 14 years old when he was diagnosed with glioblastoma. More than 30 years later, David and Janet Greene remember the day vividly. 

“When I drove into our driveway on May 20, 1993, and Janet told me that doctors said Michael had a brain tumor, I was really worried. I went upstairs and gave him a hug and said, ‘We’re going to work through this together. We are going to be with you all the way.’ Then we went to the children’s hospital in our town that evening,” David Greene said. 

He wasn’t prepared for the doctor’s words. 

“Your son is going to die, and it’s going to be hard,” the doctor told him. 

The couple determined that they were not going to give up on their son. 

“I remember calling doctors all over the country to ask them,” he said. “I didn’t get a second opinion. I got a fifth and a sixth opinion. They all told me the same thing.” 

“They said it in a kinder way,” Janet Greene said. 

The couple decided to take Michael to Vanderbilt for treatment. 

“I remember feeling like I was always carrying around a big rock in my stomach for the next year or so,” David Greene said. “The only place that offered any hope at all was Vanderbilt, and even they were very clear that the chances were essentially nothing.” 

Because of the blood-brain barrier — a natural defense system within the brain that restricts the passage of large molecules — delivering drugs to a tumor in the organ was problematic. To compensate, doctors increased the amount of chemotherapy, which multiplied the adverse side effects. 

The glioblastoma spread despite their efforts. Michael wound up in a wheelchair and blind in one eye, but when Vanderbilt doctors told him and his parents about a clinical trial for a new drug called temozolomide being offered at Children’s National Hospital in Washington, D.C., the family decided he would participate. They got a glimmer of promise for what a new treatment could do. Michael stepped out of the wheelchair and even participated in the fun walk portion of a 10K race.  

However, the positive response was temporary. Michael died in September 1994. Even after his passing, David and Janet Greene did not give up fighting on his behalf. They supported research at Vanderbilt to better understand brain tumor cells. They have given of their time as well, advocating for advances in cancer research and treatment. Janet Greene serves on the Board of Advisors for Vanderbilt-Ingram.  

Thirty years after his death, they have pledged $1 million for the Brain Tumor Center in honor of Michael Greene. 

“Collaboration is a really important word to everybody at Vanderbilt University Medical Center,” said Janet Greene. “They collaborate with each other within their department, with other departments, with other parts of Vanderbilt University and with other institutions. They are not ego people. They are ‘Let’s fix this’ people.’” 

Eric South’s story 

Eric South put up a fight after being diagnosed with glioblastoma at age 42 in February 2021. He sought out clinical trials and novel therapies, receiving treatment in Houston, Los Angeles and Nashville. A consultant in information technology and an executive in that field, he used his organizational skills along with his passion for golf to also fight for others. He co-founded Gladiator Project with his wife, Leslie South. The nonprofit raises money for glioblastoma research and patient support through annual golf tournaments in Franklin, Tennessee, each autumn, and at the Plainfield Country Club in Edison, New Jersey, each spring. 

“It was entirely his idea to start Gladiator Project,” said Leslie South. “Not long after he awoke from his first surgery, he mentioned starting a nonprofit. I just brushed it off at the time. I was like, ‘That’s great,’ knowing he was on medication. But he was insistent that he wanted to start a charity.” 

The couple met in Nashville in 2005 as government interns, got married in 2009, established a home in the Grassland Community of Williamson County and had two sons, who are now 10 and 12 years old. 

Despite their hectic schedules of working, parenting and dealing with cancer treatments, they established the nonprofit in June 2021, within four months of his diagnosis. 

After his initial treatment, he had a recurrence the following year, a scenario that is all too familiar for glioblastoma patients and their families. After completing his second clinical trial in Los Angeles, he decided to receive care at Vanderbilt-Ingram with Merrell, who had recently been recruited to Vanderbilt. 

“He and Eric clicked instantly,” said Leslie South. “We learned about Dr. Merrell’s personal history with glioblastoma, and we saw his deep-seated desire and devotion to this specific cause.” 

Merrell was in his third year of medical school when his father died from glioblastoma at age 63. That life experience led him to become a neuro-oncologist.  

“Under Dr. Merrell’s care, Eric was able to access other treatments that the FDA has approved for different types of cancer, but not for glioblastoma and that weren’t in available clinical trials. That gave Eric a lot of hope and meaning. He had the attitude of ‘Hey, if this drug doesn’t work for me, we may learn something that helps it work for somebody else or that finally leads researchers and doctors onto the path to finding a real cure.’” 

Eric South died on Aug. 31, 2023.  

In Eric’s honor, Gladiator Project recently made a $500,000 commitment to establish the Gladiator Project Brain Tumor Research Fund to advance brain tumor clinical research at Vanderbilt-Ingram. 

Path Forward 

The funding raised for brain tumor research will help Vanderbilt leverage its strengths for research on gliomas. They include the Vanderbilt Brain Institute, BioVU, the Vanderbilt University Institute of Imaging Science, the Department of Neurological Surgery, the Division of Neuro-Oncology within the Department of Neurology, the Department of Cell and Developmental Biology, the Department of Radiation Oncology and the Department of Pharmacology. 

The support will enable Vanderbilt to recruit top glioma researchers who will connect the dots between these resources and create collaborations with current investigators. It will also help establish a neuro-oncology fellowship, so that patients and their families will not have to travel across the country to receive care for glioma, which, because it’s rare, has few highly specialized programs. 

Thompson is one of the nation’s top neurosurgeons, but he yearns for more knowledge at the cellular level about gliomas so better therapies can be developed for his patients after they leave the operating room. 

“I’m in my 60s now, and I feel like I’m still asking some of the same questions I was asking about these cancers of the brain when I was in my 20s,” he said. “I don’t want to retire and find out that I am still asking the same questions.” 

The recruitment of translational scientists to mine Vanderbilt’s resources with a laser-like focus on brain tumors, identify new paths of investigation and then bridge their findings into clinical relevancy is the path forward, Merrell said. 

“I think of the patients we have had who died too young where we felt a sense of futility because of not being able to offer them other treatments,” Merrell said. “We want to change that.”