My mom, Maura McConnon Roby, was a remarkable woman—a beacon of kindness, generosity, joy, and unwavering love. On June 5, 2024, at the age of 66, she tragically passed away while being treated for breast cancer. Her loss was not inevitable—it was preventable.

 

My mom began her first round of capecitabine, combined with herceptin and tucatinib, without being tested for dihydropyrimidine dehydrogenase (DPD) deficiency. Within the first two weeks of treatment, she reported severe side effects—diarrhea, vomiting, weakness, and loss of appetite. Her oncologist advised taking a one-week break from capecitabine, but the very next day, her health took a catastrophic turn. After a clinic infusion, Maura fell into an altered state, unable to stand, speak, or even open her mouth when my dad tried to wake her. She was rushed to the hospital, where she battled for her life for six-and-a-half agonizing days, suffering from severe neutropenia, encephalopathy, infections, and cognitive decline.

 

 

Her scans revealed no cancer progression—it was the toxicity of the treatment that took her life. As I desperately searched for answers, I discovered that patients with DPD deficiency are at high risk for fatal reactions to drugs like capecitabine. A simple test could have identified her deficiency, sparing her from this suffering, yet in the U.S., testing for DPD deficiency is not standard. In other countries, like much of Europe and parts of Canada, this test is required before beginning such treatments. My mom and our family were never informed of these risks, and because of this, her death was senseless and avoidable. A post mortem DPD test confirmed that my mom was, in fact, DPD deficient. 

 

 

I miss my mom every single day. She was the heart of our family, and her loss has left a void that words cannot fully capture. But her story must not end here. I am determined to honor her memory by advocating for routine DPD deficiency testing to become standard practice for all cancer patients in the U.S. No family should have to endure the pain we’ve been through, and no life should be lost due to ignorance of this preventable risk.

 

 

Maura was more than a mom; she was a force of nature. Her spirit illuminated every room, and her warmth touched countless lives—as a devoted wife, a cherished mother, a loving grandmother, a loyal friend, and a compassionate educator. She spent over 40 years teaching children to read, sharing their “aha” moments as though they were treasures. Her passion for teaching extended to helping educators master methods for reaching all kinds of minds. She approached every challenge with boundless dedication, often bringing her work home and continuing late into the night. Her students weren’t just her responsibility—they were her mission.

 

 

As a mom, Maura guided my sister and me through life’s highs and lows with unconditional love and wisdom. She was our best friend, our fiercest cheerleader, and our constant source of strength. Her joy in becoming a grandmother was immeasurable—she cherished every cuddle, story time, and moment shared with her two grandchildren. My mom’s devotion to her family was limitless, and she never hesitated to remind us that we were her “everythings.”

 

 

Beyond her family, Maura found joy in life’s simple beauties—daily walks surrounded by nature, the melodies of jazz and folk music, the turning pages of a novel, and cherished moments with friends and relatives. She dedicated herself to causes that aligned with her strong faith and values, giving tireless hours to organizations working toward justice and equity. Whether hosting her “card parties” to raise funds for children in need or serving on the front lines of community advocacy, Maura lived with purpose and generosity.

 

 

Even as she faced her cancer diagnosis, Maura refused to let it define her. She greeted each day with courage and gratitude, inspiring everyone around her to embrace life’s blessings despite its challenges. This unwavering spirit is her legacy—a legacy I will carry forward as I fight for change.

 

 

My mom’s story matters. Her life mattered. And I am asking for your help to ensure that routine DPD deficiency testing becomes a standard of care, so no other family has to endure this preventable heartache. Together, we can honor Maura’s memory and protect lives that might otherwise be lost.

 

 

Family
Mom and Katie

 

Mom, B and Finn

 

Mom and Dad

 

Mom and Layla