Transforming Health Care through Innovative and Impactful Research

In February 2008, my world stopped when my youngest son, at the age of 6, was diagnosed with medulloblastoma; the most common malignant brain tumor diagnosed in children. Because of the aggressive nature of medulloblastoma, his treatment was equally aggressive. The year 2008 was filled with months of radiation therapy, chemotherapy, stem cell transplants, and more weeks in the hospital than I care to count. As his treatment came to an end in late 2008, the reality of what had just happened began to sink in and I was desperate for answers. I knew of a medulloblastoma researcher at Duke University and was eager to meet him to learn about his research and the aggressive tumor that had put my son through such an ordeal. To my surprise, this encounter would change the course of my life forever.

For almost a year, my husband and I had spent time around doctors and nurses dedicated to the field of pediatric neuro-oncology; an easy dedication when holding the little hands of a sick child and knowing how much they trust you. But this researcher, an individual completely disconnected from the clinic, had such passion to help children like mine, children he had never met. I was incredibly moved and while I did not understand a lot of what he talked about, I knew where to find those answers.

After our meeting that day, I decided my frustration was better used knowing this enemy and trying to overcome it. I enrolled in the University of North Carolina as a biology student and begin my quest for understanding this disease. A few months after classes began, I traveled to Washington, DC and attended my first Pediatric Brain Tumor Consortium meeting. Since then, I have become very involved with the consortium as well as many other pediatric oncology organizations.

Sadly, in early 2010, we discovered our son had relapsed and would once again be fighting this battle. But as before, he continues to endure everything asked of him without question and with a smile; life with cancer is simply his "normal."

Cancer is a formidable foe that penetrates every aspect of a patient's life and the life of the family surrounding them. It has robbed my son of his childhood, my older son of his innocence, and quite possibly may rob my husband and I of the opportunity to watch our boys grow up together. As a mother, it is incredibly frustrating to watch your child endure such hardship and be helpless to change his situation. So the only thing I know to do is press forward armed with knowledge about this disease and a burning passion to make a difference in the field of neuro-oncology. Whether with my son, or for my son, this is a disease I must continue to fight for those who will walk this unfortunate path in the future.

Ms. LeAnn Jackson participated as an ad hoc member of the Peer Reviewed Cancer Research Program's Integration Panel to represent families of children with pediatric brain tumors. Her support and work with the program has greatly moved the other Integration Panel members and all involved with the Peer Reviewed Cancer Research Program.