March 8, 2017 – November 4, 2022
Diagnosed: April 19, 2022
Lilian Blackman was a sweet, smart 5-year-old from North Carolina. She was independent and witty and possessed the kind of cute, quiet giggle that was often contagious. She loved Peppa Pig; catching bugs, frogs, and turtles; and playing with her twin sister, Everly.
In April, Lilian’s parents, Miranda and Everett, noticed that one of her eyes was drifting to the side. Shortly after scheduling an eye appointment, one side of Lilian’s mouth began to droop, and she started to walk with a stagger. As panic and worry set in, they took Lilian to UNC Children’s Hospital, where their very worst fears were confirmed — on April 19, 2022, Lilian was diagnosed with DIPG.
Discovering your child has terminal cancer is devastating, but knowing they had to make very quick next-step treatment decisions was both terrifying and overwhelming for Miranda and Everett.
“Decisions. You make them every day on simple things. What should I wear? What should I eat? But… how do you make decisions on quality of life when your child has DIPG?” — Miranda Blackman, Lilian’s mom
The Blackman family quickly connected with My DIPG Navigator, a new program developed by the ChadTough Defeat DIPG Foundation, through which they were given options to help navigate Lilian’s cancer journey.
After exploring every course of action available, the family decided to enroll Lilian in the Connect 1702 clinical trial at the Duke Brain Tumor Center. Led by Dr. David Ashley, who sits on the ChadTough Defeat DIPG Scientific Advisory Council, the trial began in early May with a biopsy of Lilian’s tumor. She then immediately underwent 30 sessions of radiation in conjunction with the oral drug PTC596.
July 6th was an emotional day for Miranda and Everett as Lilian underwent her final round of radiation. They were warned that the required MRI, which would take place a few days later, would likely not yield positive results due to inflammation from radiation. However, that following Friday, Lilian’s doctor called with the astounding news that Lilian’s tumor had indeed already begun to shrink.
“That moment gave us so much,” said Miranda. “We will celebrate each and every victory that occurs throughout this journey. Lilian is such a hero.”
While Lilian battled for her life, Miranda and Everett did everything they could to make their daughter’s life as joyful as possible, celebrating every little victory and enjoying the summer to its fullest. But as October crept in, Lilian’s symptoms took a turn for the worst and she passed away on November 4, less than 7 months after her diagnosis.
Now, the Blackman family is determined to honor their daughter by fighting for the cure they so desperately yearned for.
“I’m going to hold onto the love and not solely the loss. I know the loss is something I will have to manage within myself and my family forever. But, love always prevails.” – Miranda Blackman