Lily McKinstry was a bright, artistic, student in her senior year of high school when she started to exhibit odd symptoms that prevented her from doing the things she loved. Suddenly her handwriting began to change and it became difficult for her to simply hold a pencil. Soon, Lily would be diagnosed with diffuse midline glioma (DMG), a tumor on her brain stem. Here, Lily shares with us in her own words how she combats her own despair by helping others who suffer from childhood brain cancer.
“My name is Lily McKinstry, and my story begins on March 8th, 2019, just weeks before my 18th birthday. I was diagnosed with diffuse midline glioma (DMG) after noticing increasing weakness in my right arm and leg. I was having neck pain and constant headaches. I was falling down the stairs and late for all of my classes.
Four days after my diagnosis, I received a biopsy that confirmed I had a grade 1 pilocytic astrocytoma tumor on my brain. After that, my life changed dramatically, and days were filled with doctor appointments and physical therapy.
My treatment plan included 30 rounds of radiation and steroids. The steroids caused weight gain, a facial beard, a neck hump, and more. It felt like I was living in a never-ending nightmare where I was in constant pain, and my days were spent on the couch, unable to do any of the things I loved.
I didn’t want to live a life where I was forced to be dependent on others, and I became very depressed even though I tried to wear a brave face.
One year later, I received 5 doses of Avastin. The treatment decreased swelling in my brain and allowed me to regain strength in my arm and leg. I finally felt like I was able to live again.
While things were beginning to head in the right direction for me, I still couldn’t shake the feeling that I shouldn’t be alive. Why do I get to live while Jace, Philomena, Hadley Schmidt, Mia Grace, Hudson, Noah, Marlee, Eliana, Gavin Ward, Aspen (the list goes on and on) didn’t.
I couldn’t sit with the fact that thousands of children have died from DIPG and DMG, yet no one had done a damn thing about it. After hearing about Jace Ward and his truly inspiring fight with DIPG, I just knew that I needed to help him fight this monster. But I still had no clue where to begin.
When I was offered a Make-A-Wish, I wanted to use it to effect change. I WISH that childhood cancer received more than 4% of federal research funding. I WISH that all children could live a long and healthy life. I WISH that patients and families who have lost a child to cancer weren’t the only ones advocating for change.
I finally decided that my wish was to raise money for childhood cancer research. I sketched a design, and the design team at Make-A-Wish was able to bring it to life. I came up with the slogan, “Paint the Globe Gold for Childhood Cancer.”
I want the world 🌎 to know that childhood cancer isn’t rare; it’s gruesome. Through my shirts, I have raised over $3,000 thus far. I know it’s not a lot of money right now, but it’s something. All the money I raise will go toward the Jace Ward research and access fund. And recently, thanks to Brian Burkhardt with the Oliver Patch Project, my design is now animated.
While I am just one person, I have still been able to make an impact.
Think about the change you could make, the power we all hold, if we all just worked together.
Through my grief I have found my passion, and I believe you can, too. Helping other children who are fighting cancer is what gets me out of bed in the morning, and it’s what keeps me fighting. I fight for kids like Londyn, CeCe, Mary, and the hundreds of other children fighting this monster.
Most of us believe that all children should have the future they deserve. Please don’t wait to make a change. Think of the talent or gift you may have, whether it’s speaking, writing, drawing, singing, or dancing — then think about how you can use that gift to help fight childhood cancer.
However it may be, I believe you can make a change. But you won’t know until you try. One person CAN make a difference. And I know that person will be you!
Lily is treated by Dr. Jane Minturn of the Children’s Hospital of Philadelphia. Her tumor is currently stable and she now has routine MRI scans every six months. If you’re looking for a last minute Holiday gift and you’d like to support Lily in her efforts to raise awareness for childhood brain cancer, visit her t-shirt link HERE.