September 1: My Story

 As I read through this blog, I realized that I've never dedicated a post to my/my family's story. So I'll start at the beginning and walk you through my story with childhood cancer.

First, I am the oldest and have two younger siblings, my brother and sister. My brother started having some health concerns with his sinuses in fall 2006, eventually being diagnosed with stage III alveolar rhabdomyosarcoma in his sinus. Luckily, the cancer had not spread. At the time, I was in 7th grade, old enough to be able to google more than my parents had told me.

My brother underwent chemo at a semi-local hospital weekly for almost a year, as well as six weeks of proton beam therapy in Boston. He was kept entertained with Runescape and stuffed penguins, named after the towns were they were purchased (Boston was a favorite). After about a year of treatment, my brother was declared NED (no evidence of disease) and is currently a long term survivor, hitting 17 years this December. He is truly a success story for rhabdo.

While he was undergoing treatment, I was undergoing middle school, not a comparable struggle, but a challenge. After he was in remission, I made the decision to shave my hair at St Baldricks, so in March 2008, I became a bald 13-year-old girl. Under the team name, "Pretty Penguins," my dad, my grandpa, and I all shaved our heads. I was featured in the local paper, raising money for research from teachers, family, and friends. I'm sure you can imagine what my fellow middle schoolers had to say though.

I started in on childhood cancer advocacy around that time. I would put up posters at my high school in September, carefully gluing on the 43 gold stars, and coloring some black. While I did not cut or shave my hair every year at St Baldricks, we continued to go, with me roping in a boyfriend at the time who was quite moved to shave annually and raise more and more money. I don't go to St Baldricks anymore, but I do still donate my hair with major cuts, including 13 inches to Wigs for Kids in 2018.

I made this blog in my senior year of high school, both to document my life and to raise awareness. I spent a few Septembers blogging regularly about childhood cancer, and then dropped off as I struggled with mental illness and managing school. Throughout undergrad, I was a walk captain at the local Curesearch Walk, but stopped in grad school due to my job, and unfortunately haven't been able to get back to it since. I feel like 2024 is my year though, so fingers crossed.

I did take a break from regular activism from late 2015 to just earlier this year. I have had my own challenges with mental health and stepped back from most advocacy and volunteer work. I'm hoping to get back involved in the community in whatever way I can.