Amanda's story is a compelling testament to the strength of the human spirit when faced with life's unexpected trials. It's a story filled with the determination to overcome, the courage to adapt, and the unwavering support of a community—a journey that resonates deeply with anyone committed to raising awareness about brain health and the challenges faced by those living with brain tumors.
For years, Amanda grappled with unexplained health issues, visiting multiple doctors who could not pinpoint the cause of her symptoms, which were often misdiagnosed as sinus infections or an eyeglass prescription adjustment. It wasn't until her husband, Michael, and an ophthalmologist suggested an MRI that the true extent of her condition came to light—a shocking discovery of numerous brain tumors scattered throughout her brain. This revelation was the beginning of a new chapter, one filled with more questions than answers, but also a path that led her directly to the doors of Duke University’s medical center, which was conveniently located nearby.
Convinced of Duke’s capability to handle her complex case, Amanda, alongside her husband Michael, submitted her medical paperwork and embarked on a partnership with the institution that promised more than just healthcare. The very night her documents were submitted, Henry Friedman, MD reached out, advising her to consult with Allan Friedman, MD for surgical options. A week later, she met with Dr. Allan Friedman, who identified a primary tumor responsible for her troubling symptoms. Although the initial surgery in February 2020 only managed to remove about 20% of this main tumor, it marked the beginning of targeted treatments, starting with six weeks of radiation aimed solely at this tumor, which was causing vision problems, hearing issues, and facial numbness.
Amanda was diagnosed with neurofibromatosis type 2 (NF2), a rare genetic disorder characterized by the growth of noncancerous tumors in the nervous system. Her NF2 diagnosis was mosaic, meaning the tumors could appear anywhere without a predictable pattern, complicating her treatment plan. Despite these challenges, Amanda’s care team at Duke remained a steadfast source of support, scheduling regular MRI check-ups to monitor the stability of her condition. Her journey did not end with the first surgery; in June 2022, she underwent a second brain surgery to remove a tumor that was continuing to grow on the top of her brain, and in June 2023, a spinal tumor was also surgically removed, further alleviating her symptoms.
Throughout her medical odyssey gathering opinions from other hospitals and doctors, Duke became more than a hospital to Amanda—it became a place of solace and empowerment. She expressed profound gratitude towards her medical team, stating, “Duke is it, that’s where I feel the most valued, listened to, heard, and I appreciate my doctors so much.”
Amanda’s deep connection with Duke extended beyond her patient experience into a vital role within the community. Leveraging her background in event planning, she took on the role of coordinating the Angels Among Us event, a significant fundraiser for brain tumor research and clinical trials at Duke. Her involvement each year has become not just a job but a calling, enabling her to contribute meaningfully to the institution that continues to give her so much hope and care.
Beyond her professional and medical engagements, Amanda navigates the changes in her personal life with grace. Living on a 40-acre farm with her husband when first diagnosed, the couple recently decided to move to a lower maintenance setting on the lake to reduce daily stresses and focus on healing and enjoying peaceful moments together.
Family and friends form the backbone of Amanda's support system, providing unwavering encouragement and practical help, from caring for her dogs and managing her home to organizing surprise parties before surgeries and treatment plans. Although she occasionally feels guilty for needing the additional assistance, the love and support from her circle is relentless, helping her through moments of dark moments of depression and difficulty.
Amanda’s story is a beacon of resilience, underscoring the profound impact of medical expertise, community support, and personal determination. It highlights the essence of Duke’s care—where every patient is valued, every challenge is met with advanced treatment, and hope is not just a word but a tangible experience. Through her journey, Amanda has not only faced her health challenges head-on but has also become an integral part of a larger fight against brain tumors, proving that even in the darkest times, the human spirit can thrive. Today, she remains in good health, diligently attending her regular check-ups at Duke to ensure everything remains stable. Her floral business in South Boston, VA, which she boldly opened just days before her initial diagnosis, is not only thriving but has expanded. With a larger location and an enriched inventory, her entrepreneurial spirit mirrors her personal tenacity as she continues to navigate her brain tumor journey.