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Glioblastoma , Brain Tumor

Lindsay with daughter GBM patient

Lindsay Leiper is a registered nurse, so he understood that something was wrong when he started having petit mal seizures (involuntary blinking and an inability to talk for a few seconds). But he chalked them up to stress and pressed on without further interruption.

There was no ignoring what came next, though. On a beautiful Sunday in late June 2006, Lindsay and his wife were headed to New Hope for a leisurely afternoon of window shopping when he felt another seizure coming on. This one was different somehow from the others, more serious. He managed to pull off the road and into a parking lot, where he brought the car to a stop atop a median. His wife called 911.

Within two minutes, the seizure had ended. Lindsay was transported to a nearby hospital, where a CAT scan revealed a mass on his brain. The next day, he met with a neurologist, who immediately referred him to Donald M. O’Rourke, MD, MD Associate Professor of Neurosurgery at the Perelman School of Medicine at the University of Pennsylvania.

Dr. O’Rourke was preparing to leave for a vacation when he received Lindsay’s CAT scan images. He promptly changed those plans and admitted Lindsay.

His mass was an aggressive and malignant type of brain tumor known as a glioblastoma. Tumors are graded from I to IV based on their rate of growth, with I indicating a slow-growing tumor and IV, a rapidly-growing one. Glioblastomas often start off as stage IV tumors.

Even with surgery, chemotherapy, and radiotherapy, the average life expectancy for someone diagnosed with a glioblastoma is just over 14 months.

Defying the odds

Dr. O’Rourke removed Lindsay’s tumor on a Friday, five days after the seizure that forced him off the road. He was back home by Sunday and, aside from his incision, perfectly intact. 

Lindsay then underwent radiotherapy five days a week for six weeks. He treated it, he says, like a new job. Every morning, he boarded the SEPTA regional rail line near his Norristown home and took the train to HUP. Simultaneously, Lindsay also took an oral chemotherapy, which he “tolerated very well.”

He underwent an MRI every three months for the first five years after his surgery. He’s now getting them annually. So familiar is Lindsay with the process that he instinctively directs his eyes to the bottom of the report in search of four words: Stable and progression-free.

“I don’t worry about the MRIs anymore. I actually fall asleep in the machine—and it’s noisy,” Lindsay says. “My thinking is, I don’t know anything until I know something.”

It’s hard to explain how Lindsay has defied the odds. Our understanding of glioblastoma has grown tremendously since Lindsay’s diagnosis. However, “it’s still elusive to achieve long-term survivorship, even now,” says Arati Desai, MD, MAS, the co-director of the Penn Brain Tumor Center, an assistant professor in the Hematology/Oncology division at the Perelman School of Medicine, and Lindsay’s oncologist. “But we know more about the biology of the cancer and certain predictors of longer-term survival that exist, and we presume that those are going to be true in Lindsay’s cancer, even though we don’t have that data by direct analysis of his tumor.

“Apart from that is who Lindsay is. He’s just been an extraordinary fighter throughout this process,” she says. “He views this life as a survivor's gift. He has also worked very hard to take care of himself in terms of diet and exercise."

Just that little bit of hope

GBM patient playing guitarNot too long ago, Lindsay’s band—he plays bass—had just wrapped up a set at Siren Records in Doylestown, and he was watching the next band start theirs. Suddenly, the lead guitarist went into cardiac arrest. Lindsay performed CPR on him for 12 long minutes until the first emergency responders arrived. 

“His name’s Deane, and he’s alive today,” Lindsay says. “If I wasn’t there, because I succumbed to my glioblastoma, he might not be here, either.”

Lindsay was always an outgoing person, but his diagnosis and treatment seem to have only added depth and urgency to his empathy. Over the last 12-and-a-half years, Lindsay hasn’t missed a single meeting of the brain tumor support group that gets together monthly at the Hospital at the University of Pennsylvania (HUP).

“I need to be there for everyone,” he says. “They come in and say they were on the internet and saw dismal things about their conditions. I tell them I saw them, too, and I’m still here. If it can happen to me, it can happen to you. Just that little bit of hope helps.”

“He remains that inspiration that it’s possible for somebody to live this long and do this well and have some kind of normal life,” Dr. Desai says. “But he’s also been very giving in terms of helping people who are fighting this disease with a lot of distress. He does it quietly and individually at times, but also in the support group.”

Even after returning late the night before from Washington, DC, where he lobbied Congress for additional awareness and research funding, Lindsay was planning to attend that evening’s support group meeting. After all, it’s the people in that group—present and past friends—who motivated him to go to Washington. Over the last 13 years, he’s been forced to say goodbye to too many of them.

“It chokes me up when I remember my friends,” Lindsay says. “I miss them.”

He’s also faced with his own mortality every day. The likelihood of a recurrence for Lindsay is “very high,” according to Dr. Desai.

“Certainly, reaching the benchmark which he has is extraordinary,” she says. “But we always think about this with the mindset that someday we will be considering a scan where there will be some evidence of regrowth.”

Until then, Lindsay prefers to entrench himself in as much normalcy as he can, to basically live his life. Outside of the advocacy, he started his own CPR and first aid training program. He goes to daycares and schools, pretty much anywhere the staff’s required to be certified. “It keeps me busy,” he says.

But it’s more than that. Lindsay is genuinely happy.

“My attitude in one word: resilient,” he says. “I’ve had other issues in my life, and I’ve overcome them because the only person you can change is yourself. So I’m in a wonderful spot these days.” 

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