At 6 month old, our daughter Grace, was diagnosed with Atypical Teratoid/Rhabdiod Tumor (ATRT). An extremely rare, very difficult to treat pediatric brain tumor. The tumor had been fully resected and there were no other tumors present in her brain or on her spine. Her spinal fluid was negative for cancer cells. We were very hopefully of a positive outcome. Grace had already completed 5 rounds of chemotherapy, 1 stem cell harvest, and 3 stem cell rescues.
In December 2015, it was determined that Grace had No Evidence of Disease. By the first week in January 2016, Grace had facial paralysis that ultimately was determined to be caused by a recurrent tumor. The cancer was back. She completed 7 weeks of Proton-Beam Therapy in January and February 2016. She was placed on maintenance chemo for over 18 months. Grace had endured a many setbacks, like a subdural hematoma, shunt revision, numerous infections and a PICC reinsertion. She was a fighter!
In August 2017, Grace relapsed for a third timed placed in hospice care. Grace passed away September 7, 2017.