Ewing’s Sarcoma Warrior shares her courageous journey.

In 2017, Ella Steubing – only 13 years old at the time – received a life-changing diagnosis:  Ewing’s sarcoma. Ella graciously shared her story to help facilitate awareness of sarcoma and offer hope to those going through treatment. 

“August 21, 2017, was the worst day of my life. It was also the day I thought I would start 8th grade. Instead, it turned into a nightmare that changed everything.

Two weeks earlier, I started having severe pain in my upper back. I went to the ER a couple of times, had X-rays and CAT scans, but the doctors couldn’t find anything wrong, and some of the doctors misdiagnosed me. On what was supposed to be my first day of 8th grade, I woke up and couldn’t feel my legs. That moment I knew I was paralyzed.  My parents had to carry me into my pediatrician’s office. Seeing the fear on their faces made everything more frightening. My doctor realized how serious it was and urgently called an ambulance. I was rushed to the Children’s Hospital in Plano.

The MRI revealed a large tumor on my spinal cord.

MRI showing large tumor by spinal cord

The situation was so critical that I was transferred by ambulance to the Children’s Hospital in Dallas. The drive through rush-hour traffic with sirens blaring felt surreal. At the hospital, the doctors explained to my parents that the tumor was compressing my spinal cord, which was preventing the electrical ‘stimuli’ from reaching below my waist.  If they didn’t operate right away, the numbness would become permanent. They scheduled the surgery for that night at 10:30. The surgery lasted four long hours. At 2:00 AM, the surgeon came out and told my parents that he had removed a large part of the tumor, but couldn’t get it all because it was too close to my spinal cord.

My scar to always remind me of the challenges I faced

He couldn’t say if I would ever regain feeling in my legs. The news was heartbreaking. Then, the doctors confirmed our worst fears: the tumor was malignant. It was cancer, and it had spread to my lungs. They diagnosed me with Stage 4 Metastatic Ewing’s Sarcoma which is considered a rare bone cancer and told my parents that it was at the point where it was terminal cancer and the survival rate was just 40%. I felt like my whole world had fallen apart. I truly thought I would not make it. The months that followed were incredibly tough. I went through countless rounds of chemotherapy, radiation, Physical therapy, Port accessing and blood and platelet transfusions and administering over 60 shots at home.  The treatments were exhausting and often made me feel worse than the cancer itself. 

I felt weak, I was in so much pain all the time, but I never stopped fighting. Losing my hair was devastating. As a thirteen-year-old girl, it was hard to look in the mirror and see someone I didn’t recognize. I truly felt like I lost my identity through all of it. But my family never gave up on me. My parents, my brother Jack, and my sister Kate were my rock. They held me up when I felt like I couldn’t keep going. My doctors and nurses were incredible, fighting alongside me every step of the way. Together, we faced a nightmare and came out stronger on the other side.”

Ella has been cancer free for six years and has recovered full mobility of her lower extremities. She is a junior at Texas Tech on the pre-nursing track with hopes of working in the healthcare field after graduation. She is a steadfast advocate for patients going through sarcoma treatment and hopes her story will help inspire others to keep fighting in their journey to recovery. 

Story by Ella and produced by Aidan O’Brien 6/2/2024

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