Chronic diseases sometimes have a way of taking over the lives of the people and families facing them. That was certainly the case for Andrea and Peter Cahill.
Andrea was 28 years old in 1984, when physicians discovered a small tumor growing in her left ear. The growth, which turned out to be benign, resulted from neurofibromatosis type 2 (NF2), a rare genetic condition known to cause tumors on the nerves, particularly in the skull and spine. Doctors quickly removed it, and the couple, believing the event to be a temporary setback, got on with their lives. But, six months after surgery, the symptoms returned, this time in her other ear. In the years that followed, Andrea’s battle with NF2 would require a succession of painful treatments, including a dozen brain surgeries resulting in the loss of her hearing. In 2002, Peter, frustrated by the lack of progress and the couple’s lost sense of control, decided to do something about it.
“The disease had a complete hold on us,” he says. “We decided that raising money for NF2 research was a way we could regain some sense of control.”
Andrea and Peter established the Andrea Cahill Fund for NF2 Research in hopes of finding ways to improve the quality of life for those with NF2, increase awareness of the disease and advance research. To raise money for the Fund, that fall, Peter set off on his bike to ride 335 miles from Massachusetts General Hospital, where Andrea was receiving treatment, all the way to St. Joseph’s Oratory in Montreal, Quebec — a meaningful and inspirational place for the couple. Years earlier, faced with the difficult decision of whether to pursue another brain surgery, Peter and Andrea sought spiritual guidance. They found the oratory, and after spending time there, decided to proceed with the procedure. The operation was a tremendous success and the couple vowed to return to St. Joseph’s every year to give thanks.
Andrea passed away in January 2022, but Peter has not given up the fight. This October, he will make his 12th ride from Mass General to Montreal. To date, he has raised more than $255,000 to support neurofibromatosis research at Mass General.
“I’m motivated to do anything I can, for Andrea’s legacy, for those fighting NF2, and to help the doctors find a cure,” Peter says.
Silent Determination
Over the course of her 35-year battle with NF2, Andrea endured a series of debilitating challenges. As the number and frequency of tumors grew, they affected her balance, swallowing and speech. Each successive removal surgery required greater recovery and longer rehabilitation.
“She would come out of these surgeries and basically have to relearn everything,” Peter says.
But her tenacity and indomitable spirit became a source of inspiration to family and friends. After the loss of her hearing, she taught herself American Sign Language and started two businesses. A former first grade teacher, Andrea spent her days in local schools teaching children about people who are deaf and hard of hearing or who live with chronic disease, and her nights teaching adults to sign — all while making three to four trips a month to Mass General from her home in Falmouth, Massachusetts, for treatment.
“She had an amazing ability to connect with people, and it really became more pronounced as the disease took more away from her,” Peter says. “She was incredibly strong.”
In the wake of her death, Peter started writing about Andrea, her struggle and the care she received at Mass General — and those stories gradually became a book. The book, titled Silent Determination, will be available later this year.
“She was determined to be part of the progress,” says Peter. “She knew it wasn’t going to help her, but she was hoping and praying that downstream, there would be something that would help the next generation.”
“A Tremendous Bond”
In 2003, Andrea came under the care of neurologist Scott Plotkin, MD, PhD, director of Mass General’s Neurofibromatosis Clinic, executive director of the Pappas Center for Neuro-Oncology and director of the Neuro-Oncology Fellowship Program between Mass General, Brigham and Women’s Hospital and Dana Farber Cancer Institute. At the time, Dr. Plotkin was preparing to launch a series of drug studies aimed at NF2, and Andrea quickly signed on to participate. Peter and Andrea also started directing their fundraising to support Dr. Plotkin’s work.
“Dr. Plotkin is one of the most compassionate, brilliant men I’ve ever met,” Peter says. “He quickly became very involved with Andrea and her situation, and the three of us formed a tremendous bond. He truly solidified our connection to Mass General.”
Up until her passing, Andrea stayed close with Dr. Plotkin, participating in whatever trial she was eligible.
“She was determined to be part of the progress,” says Peter. “She knew it wasn’t going to help her, but she was hoping and praying that downstream, there would be something that would help the next generation.”
And she just might have. Earlier this year, Dr. Plotkin and his colleagues published results of one of the studies in which Andrea participated — they indicated that brigatinib, a small-molecule treatment approved for the treatment of lung cancer, can help shrink the tumors of patients with NF2.
“It was a difficult journey, but she had incredible strength and incredible will, and she had Mass General,” says Peter. “We are eternally grateful.”
To contribute to the Andrea Cahill Fund for Neurofibromatosis Research, click here.
To find out more about NF2 research at Mass General, click here.
