“My story is what makes me, me.”
Everyone’s experience with pLGG is unique and will vary from individual to individual.
Lives with pLGG, Lives for crafting
Sharing my story can provide hope and inspiration to someone who’s recently been diagnosed with cancer or is undergoing treatment. Sharing my story can give me peace, and I’m proud of myself for being open. I also want to give others insight on what being a child with cancer, a patient, and a survivor with long-term effects is like.
Facing a pLGG Diagnosis
I was young when I was diagnosed. All I remember thinking was “I never thought I’d ever be in the hospital.” I had to be away from my friends and family during my treatment, and I missed them terribly.
I’ve learned over time that my type of tumor is a low-grade tumor, developed by astrocytes or glial cells, that is a rare, benign, slow-growing tumor that usually doesn’t spread to surrounding brain tissue.
Most days were good. I was a patient at a children’s hospital in Tennessee, and their top priorities are to make sure their patients feel safe with the least amount of pain possible. The days that were the toughest were when I had to get an MRI. My veins were very small and so putting in an IV was always difficult.
My mother was by my side when I was going through treatment. My dad was at home due to his job but came to visit mom and me every weekend. I have a sister 6 years older than me. She was 13 when I was diagnosed. I have a younger brother. He was 5 when I was diagnosed.
School was always difficult. I always felt I had to work twice as hard, and sometimes that wasn’t good enough. Having to have extra time on tests, extra tutoring, always sitting close to the front of the classroom to take notes, and not to mention needing help taking notes. I felt like I didn’t fit in with the group of girls I grew up around because they were more intelligent than I was.
I am an artsy person. I like crafting things using my computer and my Cricut machine. I love working with kids and using my art. My dream job is to be an art therapist.
My hero is probably my aunt. She has always been there for me in the good and bad, as well as being there for my parents and siblings when it was hard for them during my treatment.
If I had a magic wand, then I would obviously wave it and get rid of brain tumors forever. If I had a magic wand to change something about my tumor, it might be the placement of it. I am partially blind due to my tumor being on my optic nerve. I would give anything to know what it’s like to see completely out of both of my eyes.
In the room my mother and I lived in while I was going through treatment, we had the bible verse Jeremiah 29:11 posted on the wall. “For I know the plans I have for you, declares the Lord, plans to prosper you and not to harm you, plans to give you hope and a future.”