Dylan was a sassy, energetic four year old, ready for Pre-Kindergarten and signed up for ballet and soccer. In the summer of 2018, one of Dylan’s eyes started turning in. She was subsequently diagnosed with a lazy eye. The eye seemed to get worse, then Dylan began having balance issues and finally, random vomiting. We were able to get her an appointment at the Casey Eye Institute in Portland, OR. After looking into her eyes, the eye doctor said “let’s talk”, and it was clear something was wrong. We went over to the Doernbecher Children’s hospital emergency room for an MRI. We were told “we see something in the pons” after a quick brain MRI. And while she wasn’t officially diagnosed until the next day, we knew at that point what we were dealing with.
Fifteen months later, Dylan is still fighting and is a true warrior. She has had 47 rounds of radiation, a PICC line in her arm for a year, many MRIs, doctor appointments, etc. She swallows many pills a day, gets IV therapy several times a week, and rarely complains. She hasn’t walked on her own in almost a year, has limited use of her right arm and leg, her eyes never fully corrected, and speaks slower and less clear. However, she is still sharp, sassy and in many ways, the same old Dylan. She loves music, her dolls, princesses and unicorns. She loves to bake and make slime. She has a knack for noticing something unique about people and complementing them for it. She continues to grow and is getting so tall. How I wish things were different for her.
We are continuing to fight and research treatment options for her. Our hope is that she will get to participate in a CAR-T trial at Seattle Children’s Hospital. As trials generally do, this one is moving slowly to get started. We believe this particular trial holds a lot of promise.
For updates about Dylan’s fight with DIPG, click here.
