Kelly Long is a caregiver and advocate whose journey with head and neck cancer began in December 2023, when her husband, John, was diagnosed with HPV-positive squamous cell carcinoma at the base of his tongue. After months of searching for answers while his symptoms were attributed to acid reflux, the diagnosis left their family shocked, frightened, and facing an uncertain future.
John underwent surgery to remove the mass, followed by radiation and chemotherapy. As treatment began, Kelly quickly took on a new role—not only as his wife, but also as his caregiver, advocate, researcher, extra set of ears at appointments, and a source of support as their family navigated treatment and its many challenges.
Nearly one year after his initial diagnosis, John’s cancer returned in the lymph nodes of his neck. In January 2025, he underwent surgery with the hope of removing the cancer through a neck dissection. However, the procedure had to be stopped when doctors discovered the disease involved critical structures in his neck, including the carotid artery. Their family once again faced additional treatment, uncertainty, and the physical and emotional challenges that come with a head and neck cancer diagnosis.
Throughout their journey, Kelly transformed fear into knowledge and advocacy. She began researching John’s disease, learning medical terminology, asking questions, reviewing reports, and understanding the importance of being an active participant in a loved one’s care. She also began sharing their experience publicly and soon heard from other patients and caregivers who were searching for information, resources, guidance, and simply someone who understood what they were going through.
Those connections inspired Kelly to become a Head & Neck Cancer Alliance Ambassador. She is passionate about helping patients and caregivers find resources, encouraging others to advocate for themselves and their loved ones, and reminding families that cancer affects far more than the individual whose name appears on the medical chart. Her goal is to turn her family’s experience into advocacy, awareness, compassion, support, and hope for others impacted by head and neck cancer. This journey has never belonged to just Kelly and John. Their two boys, Dylan and Conner, walked alongside them, each carrying it in their own way. As a family they have held each other up during the hardest days and learned just how much strength can come from standing together.
