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Liliana’s Legacy
Liliana was diagnosed in April 2021 with Diffuse Intrinsic Pontine Glioma (DIPG) at the age of 2 ½ and passed away on June 17, 2023.
She endured photon radiation under sedation five days a week for six weeks, took steroids that caused significant bloating and weight gain, and began taking a phase 1 clinical trial medication. Her condition stabilized, and by her 3rd birthday in October, she was starting to look and act like her old self.
All was good until the end of March 2022, almost one year after her diagnosis, when a routine follow-up MRI indicated that the study drug was beginning to lose its effectiveness. She received another shorter round of radiation under sedation and began a regimen of maintenance chemotherapy. Throughout this period, Lili exhibited no DIPG symptoms and was her old self. We had a wonderful summer and fall, and she even learned to swallow her pill medications with water!
In early December of 2022, at the age of 4, Lili’s DIPG symptoms reappeared with a vengeance. She resumed steroids, received another two-week round of radiation, and started taking another study drug (ONC-201 through expanded access). We were slowly beginning to see signs of improvement as she battled on toward two years out from her diagnosis.
Unfortunately, in mid-May, progress ceased, and Lili began a renewed decline. The decline accelerated, and ultimately, the tumor was too much for her little body to handle. Liliana went to God on June 17, 2023, at 2:10 AM. She passed peacefully, surrounded by family.
Liliana was a warrior and nothing short of a miracle. She touched many with her bright light, and we were blessed to have her in our lives.