Lilian Blackman is a sweet, smart 5-year-old from North Carolina. She’s independent and witty and possesses the kind of cute, quiet giggle that is contagious. She loves 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 everyday 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.”
Now, 4 weeks after completing radiation, Lilian is exceeding all expectations. She has almost full mobility back and just spent 6 magical days with her family at Walt Disney World, making memories that will last a lifetime. Miranda and Everett hope, for Lilian, that that lifetime will last as long as possible.
“We are committed, absolutely with all our beings, 100% dedicated, to making Lilian HAPPY,” said Miranda. “This is now my life’s mission. This is it. This is my job. And to love her sister, Everly, with all of my soul. And I will. I WILL DO THIS.”