Patrick Jackson first found out about the tumors on his spinal cord and brain while studying abroad in Korea in March 2010. He came home and had surgery in Ohio, but after a reoccurrence decided to seek more help for the rare cancer known as ependymoma.
That’s when he found UPMC CancerCenter and Frank Lieberman, M.D., director of the Adult Neurooncology Program. Dr. Lieberman is one of a group of clinical and basic scientists constituting the Collaborative Ependymoma ResearchNetwork (CERN), a group dedicated to finding new treatments for this type of cancer. University of Pittsburgh is one of the member institutions in the CERN clinical trial network. Last week, CERN commemorated Ependymoma Awareness Day on April 18 during the group’s semi-annual investigator meeting with a mass butterfly release, an insect chosen because it represents hope through change.
“Through our team members’ collaboration and work with our external and scientific advisory boards, the CERN Foundation comes closer to a cure every day,” the group said. “But the efforts of the CERN Foundation are made possible only by another group dedicated to fighting ependymoma: the patients, caregivers and primary health care providers who are on the front line of treatment.”
At diagnosis, Jackson had one tumor on the end of his spinal cord, a long mass of tumor in his lower back and then clusters and spots of tumor up his spinal cord. Since beginning treatment, the tumors have been slowly shrinking to the point where many of the small nodules and clusters higher on his spinal cord and the couple in his brain are no longer visible on imaging. Some of that has been attributed to radiation treatments, Jackson said.
“I am so fortunate that my ependymoma is low grade and has responded so well to treatment,” he said. “I would just want people to know that there is hope and to keep a positive outlook and attitude, to eat well to help their bodies fight off the disease and to find one of the doctors in the CERN network because there is nothing more comforting than having doctors familiar with your disease.”