Ewing’s Sarcoma: A Sentimental Look Back

I am a sentimental human.  Every so often, I’ll pull out these photo albums that my mom lovingly put together for me growing up.  They start with a baby girl with big brown eyes exploring her new world.

Eventually, she grows into a precocious toddler and then a proud big sister, and there are photos of birthdays and pumpkin patches and school projects.  We see the girl start to grow into an awkward middle schooler, and then suddenly – it’s a little different.

My Diagnosis: Ewing’s Sarcoma

April of 2006 was the turning point.  I was thirteen and up until then, my family lived a blissfully normal life in the suburbs of Cincinnati.  But then one day, I noticed a grape-sized bump on the back of my left knee.  And so began the frenzy.  My pediatrician referred me to Cincinnati Children’s, where I had the growing bump removed.  The pathology reports came back, which led to what seemed like a million and one MRIs and scans. And then, on May 31, 2006, it came.  My diagnosis: Ewing’s sarcoma. A childhood bone cancer.

Here in the photo albums, there’s a frail teenage girl.  I barely recognize her as me.  She’s lost all of her hair – eyebrows and eyelashes included – and is sporting a bald, shiny head.  She’s much too skinny, and she’s in a hospital bed for most of the pictures. Loved ones are often gathered around her. There aren’t as many of these photographs, as if documenting everything made it all too real for the family.  The mom and dad forced smiles. The younger sister, just nine years old, smiles naively, mostly unaware of the chaos. But other times, she wears a scared expression and is all too aware of the tense emotions surrounding her.

The Treatments, Surgery, and Grueling Recovery

This section of photos masks the side effects of 14 rounds of chemotherapy – nausea, hair loss, mouth sores, blood transfusions, allergic reactions, infections, bone pain, and loss of appetite. It also glosses over my complicated, invasive surgery – the one that took four doctors six hours to remove my tumor and then perform the necessary steps to put my leg back together.  The operation was wildly successful on all accounts, except to the 13 year old girl it was performed on.  It was an absolutely grueling recovery, with the pain management team working overtime to find me some relief immediately following.  I spent countless hours working with my physical therapist, learning to walk once again.  It took months of work, but I now walk, and dance, and skip, and jump for joy without a limp – something my doctors didn’t think possible.

My family was my rock during all of this, helping me navigate the more nuanced side effects of Ewing’s sarcoma – missing out on social activities, lack of attendance at school, navigating friendships and relationships when everyone looks at you with pity, and dealing with the emotional loss of my hair and my femininity.

Growing Healthier and Stronger

Still, life went on.  And so do the photos.  Soon, there’s the girl, sporting short peach fuzz hair now, and the pictures are aplenty. Over time, you see me grow healthier and stronger. We speed through high school – a close-knit group of friends at dances and birthday parties, my first dates and first car, and penultimately, my graduation ceremony.  The albums evolve with the times, and soon are stored in albums on social media instead of physical books as I progress through college and into the adult world. The memories, though, are just as strong.

Looking Forward: Striving For “Blissfully Normal”

As much as I love looking back at my memories related to Ewing’s sarcoma, I love looking forward even more.  Ironically, my new normal is often a reminder of my past.  My phenomenal teachers and team of intervention specialists at Cincinnati Children’s inspired me, and I went on to earn my degree in special education from Miami University.

I now teach at the very school I attended when I was diagnosed and undergoing treatment for Ewing’s sarcoma.  It’s all very full circle.  When cancer took away my ability to play competitive sports, I found a new outlet in theater. I love being on stage and now perform with local theater groups here in Cincinnati.  I bought myself a place at age 23 and with it came a mortgage, and then a car payment, electric fees, medical bills, and student loans.  But this is exactly what my family prayed and hoped for – for me to someday regain my “blissfully normal.” I wouldn’t trade these bills I pay every month for anything.

Raising Awareness for Childhood Cancers

I’m reminded of this often, because I’ve met too many children through the years whose cure didn’t come soon enough. They are why I am actively involved with groups whose mission is to raise awareness for childhood cancers. Champions for Cincinnati Children’s, CancerFree Kids, and StupidCancer are all great organizations. I certainly wouldn’t be where I am today if my family and I hadn’t taken advantage of the resources during my Ewing’s sarcoma treatment and recovery.

Good conversation and some solid belly laughs provided by the Child Life staff, social work team, and my sweet nurses were the some of the best medicine I received. Even 10 years past treatment and into remission, I am aware and grateful for the impact they had on my healing, both physically and emotionally.