Robyn was diagnosed with Glioblastoma Multiforme (GBM) in the spring of 2017. GBM is an extremely aggressive form of brain cancer with no known cure. The average survival rate with GBM is approximately one year. There is currently one treatment regimen for GBM, including initial tumor resection surgery, chemotherapy, and radiation. Usually, within a few months after this regimen, the tumors aggressively reappear, and treatment options have been exhausted, generally resulting in hospice care.

Robyn underwent the typical regimen soon after diagnosis and had a clear understanding of what her future would hold. Nonetheless, Robyn desired to live her life as normally as possible with whatever time she had left. After several months, she was able to drive, return to work on a part-time basis, cared for and parented her three children, and did exactly what she desired – to live her life. She also chose to wear a newer “headgear” of electrodes (called the Optune Device) for almost 24 hours a day. This device was worn over a shaved head and sent small electrical shocks to the targeted brain area to try to keep the tumor growth in check.

Robyn had always been a strong, often stubborn individual, and took on the fight of her life with courage, determination, and toughness. She did not want any special treatment or pity. She wanted her life to remain as normal as it could – despite her terminal illness.

To the shock of her entire medical team, Robyn continued her fight for another 6 years until, inevitably, the tumors reappeared on her scans. Her doctors had never seen this in their careers and found themselves in unchartered territory. With Robyn’s consent, the decision was to go through the typical treatment regimen again since she had healed from the first regimen six years prior. Robyn eagerly agreed to fight until the very end.

In the spring of 2023, Robyn endured not one, but three more brain surgeries, chemotherapy, and another round of aggressive radiation. The tumor growth, this time, was extremely aggressive, and Robyn finally succumbed to this dreaded diagnosis on November 20, 2023, eight days shy of her 60th Birthday. 

I am Robyn’s only sibling, and I spent a good amount of time with her, from the very beginning of her fight, through the last few months of her life, and was with her when she took her last breath. We talked often about her situation, and I promised her that I would stay involved with raising money and awareness for Glioblastoma research. She smiled at that and said, “That would be so cool.”

Robyn was an intense lover of music, and I am a musician. I thought naming this foundation “Rockin’ 4 Robyn” was appropriate. My initial plans were to host different music events to raise money, and we already have events in the works. However, I soon decided to host non-music events as well to raise money and awareness, and many of those are also in the works.

The Rockin’ 4 Robyn Foundation, Inc. serves to raise awareness and funding for Glioblastoma research. I have already established a partnership with the Glioblastoma Foundation, based in North Carolina. They are working on potential breakthroughs, specializing in genetic testing of GBM tumors. They are discovering that there may be different treatment regimens depending on the specific genetic makeup of the tumor. The current “One and Done” regimen (for most cases) will hopefully one day change to a more tailored approach to treatments based on the genetic individuality of the GBM tumor. This may extend the life expectancy of GBM patients, and even result in a cure one day. 

I have worked with the Glioblastoma Foundation to establish a special fund in Robyn’s name. The Rockin’ 4 Robyn Foundation will be raising proceeds to go directly into this fund, and will be used to purchase lab equipment so research and breakthroughs can continue.

Robyn was a strong woman and fought hard to live as long as she could, despite her full understanding and awareness of her diagnosis. She inspired many people – including her medical team, her family, friends, and so many who heard her amazing story. It is an honor for me to continue on, in Robyn’s memory, and try to make a difference for future patients diagnosed with Glioblastoma.