Elizabeth Carr

Elizabeth was a sweet, happy-go-lucky two-year-old, who loved her family, her dog, and Barney. One day when we were at a park, she said her neck was sore. We thought perhaps she had hurt herself on the swing, but the pain persisted. She was so little it was hard for her to communicate what she was feeling, but we knew something wasn’t right. Although doctors suggested a watch-and-wait approach, we asked them to do a scan. The first one didn’t go far enough to see the tumor, so we requested another. The second revealed a Medulloblastoma, and she was immediately scheduled for surgery. After a year of radiation and chemotherapy treatments, she started kindergarten, welcomed a second sister, and enjoyed life. We did annual checkups with the oncology team, and all was good until the summer of 2002, when she told us one day that she felt the same pain she had when she was little. We took her to Johns Hopkins, where they diagnosed a recurrence. We had been hopeful that getting to the 10-year marker would mean Elizabeth was cured, but we were grateful for the joy we shared as a family while she was with us. She had an infectious laugh and a gentle spirit; she loved animals, sweets, the beach, doing crafts, and watching funny movies with her Dad. We were all with her when she died on February 24, 2003.

Age at Diagnosis:
June 29, 1992

Type of Brain Cancer:

Summary of Treatment:

Surgery, radiation, and chemotherapy at Medical College of Virginia as part of a Duke protocol; recurrence treatment: surgery, chemotherapy, and radiation at Johns Hopkins

Sharing Elizabeth’s story is a way to help others who are navigating this difficult journey and an opportunity to influence change. After Elizabeth died, we traveled to Capitol Hill for Gold Ribbon Days to lobby for more funding for pediatric cancer research and found that sharing our story made a difference to lawmakers. We hope that is still true 20 years later as the need for funding continues.

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