Rare Brain and Spine Tumor Stories

Liz never imagined that she would become a care partner to her vibrant husband Julio because of an ependymoma diagnosis. She shares their journey and how they work together as a team through the good times and the bad.

Dalouny has been living with a brain tumor called a glioblastoma since 2018, and tried many treatment approaches before coming to NIH. Today, she continues to defy the odds and live life to the fullest with her family, friends, and a fulfilling career.

Jen has lived with an ependymoma for over eight years and undergone multiple treatments, including three brain surgeries. She shares how her determination to go back to work and find a good medical team has helped her live her best life.

Lynita has lived with ependymoma for 17 years. She shares how she has endured multiple surgeries, radiation, and drug treatments, including an immunotherapy clinical trial, and has adjusted her life to live fully and joyfully with physical limitations.

Tom survived a car crash, two bouts of cancer, and an autoimmune disorder. He shares how faith got him through hard times and changed his outlook.

Robert shares how surviving a rare brain cancer has given him a new perspective and approach to life that includes daily healthy routines and the pursuit of a greater purpose.

To help you manage effects caused by brain or spine tumor, patients share tips so you can cope in a positive way.

Carol has spent nearly half her life living with her ependymoma diagnosis. She shares the long-term side effects and positive experiences from her cancer journey.

Andrea’s two children, husband, and parents have all been affected by her ependymoma diagnosis. She shares how they adjusted and provided support.

Nick had four surgeries and multiple radiation treatments to treat his ependymoma tumors. He shares what to expect during and after radiation and how cancer changed his outlook on life.

Ken is an 18-year rare tumor survivor. Although his treatments caused long-term side effects, he shares why he believes he is lucky to be alive and his hopeful advice to others.

Giselle shares her treatment journey with five brain tumors over 23 years and the lifelong impact. She also shares important advice to manage chemotherapy and stay positive.

Beth discovered a tumor in the center of her spinal cord and the only treatment is surgery. She shares how she found expert care, support, and resources to prepare her for surgery.

Lee was shocked to learn he had a tumor in his spinal cord that required surgery. He shares how he found the right neurosurgeon, prepared and recovered fully from surgery, and now wants to help others.

Marcela discovered an ependymoma in her spinal cord. Living internationally, she shares how she found support online and chose to participate in a study to help others.

To help guide you through your brain tumor journey, patients, caregivers, doctors, and advocates share their advice.

Stu shares how the long-term physical impacts after brain surgery, including vision, balance and speech difficulties, have helped him appreciate the minutia of life and enjoy the world around him.

Sarah was 37 years old when she was diagnosed with an ependymoma. She has been coming to NIH for care for four years. Sarah shares her tips to help others.

Dunamis was age four when she had her first surgery to remove a brain tumor. Years later, she finally received an accurate diagnosis: PNET. She shares how she positively copes and finds hope.

José shares how he learned about his rare midline glioma cancer in his spine and why he chose to participate in a clinical study to help others.

Deborah is a two-time cancer survivor. She shares what it is like to live with a type of rare brain cancer called meningioma to help others.

To help motivate you through your journey as a brain tumor survivor or caregiver, others in the brain tumor community share some words of encouragement.

Darien shares how he lived with what he thought was an aggressive brain cancer for eight years. Then, he got an accurate low-grade rare tumor diagnosis and made a fresh start.

A pineal region tumor survivor shares how he found the best care, treatments and resources to live.

A mother shares her family’s 11-year quest to find the best treatments for their daughter’s medulloblastoma tumors.

A brain tumor survivor shares his experience with oligodendroglioma and advice for others.

Read how a father is advocating to save his two sons with oligodendrogliomas and how his family copes.

Learn how a patient with an ependymoma in her spine has survived the disease for over 30 years. She shares her treatment experieces and coping tips.

A brain tumor caregiver shares how her journey supporting her son led to an international brain tumor organization.