From Diagnosis to a Decade of Stability to New Science: How Research Changed My Journey

Graham J. Stevens - Team Gray for Graham

My journey with a brain tumor began on August 8, 2008 … 08/08/08 … when I was diagnosed at age 31 with a mixed glioma. In that moment, I was faced with many medical decisions and remember wishing I had paid a little more attention in my college biology classes.

That was several decades ago, and thankfully a lot has changed since then. The science of cancer treatment has advanced tremendously, thanks to the dedication of researchers, doctors, and patients willing to help move the field forward.

Along the way, I’ve been fortunate to benefit from incredible care, groundbreaking research, and clinical trials that continue to push brain tumor treatment forward. That’s why it means so much to be recognized at this year’s Path of Hope, hosted by the Connecticut Brain Tumor Alliance. I’m honored to receive the Courage Award, but I can only accept it on behalf of the many patients who have stepped forward to participate in research and clinical trials—each playing a role in improving treatment options for those who come after us. I’m grateful to have played a small part in that progress as well.
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“Research has given me more than a decade of stability that once seemed improbable—and it gives hope to every patient who will face this diagnosis in the future. Through participation in two clinical trials and access to advanced neurosurgical care—including surgeries in the NIH-funded AMIGO Suite—I experienced firsthand how research can change what is possible for patients with brain tumors” ~ Graham
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My treatment journey has taken me to some of the leading brain tumor programs in the country. My first surgery took place at Brigham and Women's Hospital with Dr. Peter Black, part of a renowned program that includes the Dana-Farber Cancer Institute and Harvard Medical School. Two of my surgeries were later performed by Dr. Alexandra Golby in the Advanced Multimodality Image Guided Operating (AMIGO) Suite, an advanced neurosurgical operating suite funded by the National Institute of Health to improve precision in brain tumor surgery.
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Over the years, my journey has included both everyday challenges and truly extraordinary moments. I arrived in Boston for my second surgery the day of the Boston Marathon bombing. When I checked into my hotel, injured runners and families were still trying to reconnect in the aftermath of the attack. The next morning, the streets near the hospital were eerily quiet, with armed guards checking the names of patients allowed inside. But challenges have also come in quieter moments—like meeting Dr. Black on a Sunday in an otherwise empty office at Brigham and Women's Hospital to talk through treatment decisions, or flying to Pittsburgh and back in a single day for a clinical trial appointment so I could return home to be with my wife, who was more than nine months pregnant with our first daughter. Over the past 18 years, trips for treatment have sometimes felt routine—monthly journeys to Boston, New York City, Hartford, Pittsburgh, and New Haven—each one another step along a long and unpredictable path.

I also had the opportunity to participate in two clinical trials that helped advance new approaches to treatment. One was a Phase I immunotherapy study at University of Pittsburgh Medical Center – Hillman Cancer Center led by Dr. Hideho Okada, who is now a Professor at University of California San Francisco and runs UCSF’s Brain Tumor Center – Okada Laboratory. Later, I joined a groundbreaking trial targeting the IDH-1 genetic mutation in my tumor. That therapy—developed by Agios Pharmaceuticals and now part of Servier Pharmaceuticals—kept my tumor stable for more than ten years, something that would have been hard to imagine when I was first diagnosed.

Last year the tumor returned again, and after another surgery my diagnosis was updated to a Grade 3 astrocytoma. Today I continue treatment closer to home with Hartford HealthCare, including radiation therapy with Dr. Charles Rutter in Hartford Hospital Cancer Institute that I completed in October, starting a new Servier Pharmaceuticals FDA-approved IDH-1 inhibitor called VORANIGO®, and starting 12 cycle of chemotherapy under the care of Dr. Alexis Demopoulos at the Hartford Hospital Cancer Institute.
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Why Support Matters

Through every stage of this journey, I’ve seen how research, collaboration, and patient support can truly change the trajectory of a disease that still has far too few treatment options.

Last year, the Path of Hope community raised nearly $200,000 to support programs through the Connecticut Brain Tumor Alliance. Those funds help families navigate diagnosis and treatment while accelerating the research that leads to new therapies.

Every clinical trial I joined… every new treatment I received… exists because people chose to support this work.

By supporting the Path of Hope, you help fund the discoveries, clinical trials, and patient programs that give families more time, more options, and more hope.

If the past two decades of progress have taught me anything, it’s that the next breakthrough may already be underway.

Together, we can continue moving forward on the Path of Hope for every patient and caregiver facing a brain tumor diagnosis.