When she was just 13 months old, my daughter Caroline was diagnosed with a tumor in her brainstem. Because the brainstem is in the center of spinal cord and surrounded by the nervous system her tumor was inoperable.  One week later, Caroline’s tumor mutated into an aggressive grade IV cancer and would no longer respond to chemotherapy.  My family and I were devastated by this news, but we were even more devastated to learn that there were no other pediatric treatment options.  

While survival rates have greatly improved for many pediatric cancers, aggressive forms of brain tumors like Caroline’s have seen little progress. Caroline was limited to the same unsuccessful, 40 year-old therapies. 

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With nothing else available, we enrolled our daughter in a clinical trial for adults at the National Institutes of Health. The trial required dangerously high doses of radiation for a child and had never been tested on a baby. We had no choice. There were no pediatric options. Caroline was dying from the tumor, but it was the adult radiation protocol that took her life. We lost our daughter just 63 days after diagnosis.     

Today, malignant brain tumors are the leading cause of cancer-related death for children under 14 years old.  In 2014, more than 4,000 American families had a child diagnosed with a brain tumor.  The average five-year survival rate for children with malignant brain tumors is 66 percent, but for children with more aggressive gliomas, chances of long-term survival are less than 20 percent.  

September is Childhood Cancer Awareness Month in the U.S. and provides an opportunity to bring new focus to the fight. It is inconceivable that there is no hope for families like mine who are facing aggressive pediatric brain tumors. Members of Congress have the power to make a real difference and turn hope into a reality. 

The Childhood Cancer Survivorship Treatment Access and Research (STAR) Act was introduced in both chambers of Congress in July 2015.  The bill focuses on maximizing the quality of life for childhood cancer fighters and survivors, advancing childhood cancer research, and giving young cancer patients and their families access to life-saving treatments. The STAR Act would authorize the National Cancer Institute to expand efforts to collect biospecimens needed to gather crucial clinical, biological, and demographic information on pediatric cancer patients and conduct key studies to help find a cure.   

It is time for Congress to take concrete action on this important issue. The STAR Act will help stimulate more effective pediatric brain tumor research, lead to better more successful treatments and improve patients’ quality of life. 

Even though I lost my daughter, my fight against brain tumors is far from over.  By advocating for research and pushing for a cure for this disease, I feel that I am giving honor to her memory.  It is my hope that families like mine will soon have many more options to fight pediatric brain tumors and, ultimately, to win.

Peabody is a volunteer advocate with the National Brain Tumor Society.  She lives in Bethesda, Maryland.