Hope & Heroes Memorial Page for Grace
At six months old, our daughter Grace was diagnosed with Atypical Teratoid/Rhabdiod Tumor (ATRT), an extremely rare, very difficult to treat pediatric brain tumor. During treatment the tumor was fully resected and there were no other tumors present in her brain or on her spine. Her spinal fluid was also negative for cancer cells. We were very hopeful of a positive outcome.
While in treatment Grace had completed five rounds of chemotherapy, one stem cell harvest, and three stem cell rescues. It was a very arduous process. In December 2015, it was determined that Grace had No Evidence of Disease.But during 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 seven weeks of Proton-Beam Therapy in January and February 2016. She was placed on maintenance chemo for over 18 months.
Grace had endured many setbacks, like a subdural hematoma, shunt revision, numerous infections and a PICC reinsertion. She was a fighter and we were beside her every step of the way! In August 2017, Grace relapsed for a third time and was placed in hospice care. Heartbreakingly, Grace passed away on September 7, 2017.
Grace was treated at Columbia University Medical Center in the Pediatric Oncology Division. While being treated at the oncology clinic, Grace spent a great deal of time in the Alfano Family Arts in Medicine Studio. Grace essentially grew up at the clinic while a patient. She started working with Studio Director, Nitza Danieli, at 7 months old. Grace’s older brother, John, even got to experience the Art Studio. It was a precious retreat for our family during a long and difficult treatment process.
Over these past two years, we have been lucky enough to be able to help resupply the Art Studio with donations from Grace supporters. We hope to continue Grace’s legacy by having donations made in her honor to Hope & Heroes, the charitable non-profit that funds Columbia’s Pediatric Oncology Division. These donations to Hope & Heroes will be directed to the Alfano Family Arts in Medicine Studio and help other families in treatment. It is a most fitting legacy for legacy for Grace for whom art changed her experience of a very painful journey.
We thank everyone who will make a gift in Grace’s memory to Hope & Heroes and the Alfano Family Arts in Medicine Studio.
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