Seeing your child in the hospital is a horrible thing to witness. For Dylan’s parents, this was a reality. Dylan first experienced symptoms of DIPG when she was in daycare and her eye started moving inwards. Her parents went to visit the ophthalmologist, who told them that nothing was wrong. Later on, she began experiencing balance issues and started vomiting. At this point, her parents realized that something was not right.
On August 7th of 2018, Dylan’s parents rushed her to an ophthalmologist who sent them to the emergency room, where she had an MRI. They realized Dylan had a tumor in the pons. Casey, Dylan’s mother, remembers her husband asking the doctor whether there was any surgery they could get to cure the disease. When the doctors came out, the family had a desperate look on their faces, searching for any sign of hope. But, they could not find any as Dylan’s doctors talked about possible treatment options. Dylan eventually got worse and had to undergo radiation, which worked for a while. However, she never fully regained her ability to walk.
After multiple sessions of radiation, Dylan’s doctors realized that her cancer had spread to the spine. After periods of improvement and relapse, Dylan began to lose functioning in her limbs, one at a time. Dylan eventually passed away on April 9th, 2020.
Dylan was said to be a very sassy child. According to her mother, she loved to crack jokes about others, but she was also very kind. With every nurse she had, Dylan always found something to compliment, whether it was their hair or nails or eyes. She was a very bright soul who loved to have fun and make others happy. Her story is one that was marred by DIPG and we will always miss her presence.
The journey that Dylan and her family underwent was very tough. She was diagnosed with a disease that there was relatively little research into and one that her doctors continued to misdiagnose as a lazy eye because of a lack of knowledge. DIPG claimed her life in a very regrettable manner, which inspired her mother and father to start an organization dedicated to raising awareness about DIPG as just one of many pediatric cancers with research programs that are underfunded.
Dylan’s story is one of hope and love and loss. Her story serves as an inspiration, not only to us at CRF, but to the world as a whole. It is a story of a brave child who fought to keep a smile on her face and to bring that same smile to the faces of others, in a period of darkness. We are dedicated to making sure that children, like Dylan, and their families who face DIPG do not have to face such an issue alone.
By Aayush Gandhi