Sunday, June 7, 1998 was a day that unfortunately many of us have experienced. Our happy, sweet 19-month old daughter seemed overly tired. By the next day, the lethargy only worsened. She was first taken to the pediatrician who ordered a CT scan and blood work. We never did make it to the lab for blood work because after the CT scan the radiologist and our pediatrician called for an ambulance to take our daughter to Children’s National Medical Center. That started the whirlwind of activity, which became the entire focus of our lives for the next 15 months.
At CNMC, our daughter, Amy Schiller, was diagnosed with an extremely rare and aggressive brain tumor, called atypical teroid tumor. So rare, in fact, that the tumor was sent to Children’s Hospital of Philadelphia for diagnosis. Almost immediately, Amy began a treatment protocol, which was new at the time. It included six rounds of high dose chemotherapy, followed by stem cell recovery. When Amy finished her chemotherapy, there were no signs of the cancer; however, as a precautionary measure, we opted for Amy to undergo radiation at George Washington University Hospital. Amy finished her radiation treatment in January 1999. By March we were enjoying a week long trip in Disney World, courtesy of The Make-A-Wish Foundation. We all had the time of our life.
Unfortunately, in May the cancer returned as a pea size tumor. After another surgery to remove the tumor, we headed to Boston for Stereotactic Radiosurgery at Massachusetts General Hospital. While at Mass General, three weeks after surgery to remove the tumor were told the tumor was growing again, and that it was three times larger that it was before when it was removed three weeks earlier. That was the beginning of the end.
After surgery to insert a shunt in Boston, and the Stereotactic Radiosurgery, we were sent home to Crofton to see if the treatment would shrink the tumor. Unfortunately it did not. By the end of August, the wonderful doctors at CNMC helped us contact Hospice of the Chesapeake, and we cared for Amy at home for the next two week until she died, one month shy of her third birthday, on September 11, 1999.
Amy had an immeasurable impact on peoples’ lives. She was a very spunky child – full of life! The courage that Amy showed during the 15-months she battled this horrible disease changed the lives of many people who knew her.
Creating a race in her memory – to raises money to help other children and their families – is something that we very much wanted to do. We know first-hand how children with brain tumors, and their families suffer, and we wanted to do whatever possible to help find new and better treatments and possibly a cure.
Amy’s Run, a 5K, took place on the Crofton Parkway on Saturday, October 25, 2004 (on Amy’s seventh birthday), at 8:00 a.m. All proceeds from the very successful 5K run/walk event benefited the Childhood Brain Tumor Foundation.
Organizers of Amy’s Run 5K found excellent sponsors and volunteers, who gave generously in hope that all children one day will benefit by having a better quality of life and for cures to be found for all children.
The honorary chairman of the race was former Washington Redskin, Mark Rypien, whose son, Andrew also lost his battle to brain cancer.
Written by Rob and Lisa Schiller, Amy’s parents
This article was written for the Childhood Brain Tumor Foundation, Germantown, Maryland.
Kayleigh’s Story