I was diagnosed with embryonal rhabdomyosarcoma in my right eye shortly after my first birthday in 2001. My mom noticed something strange when she went to wake me from an afternoon nap—my eye appeared to be pushed out, as though something was behind it. My parents rushed me to the doctor, where they received the worst news of their lives.
Over the next year, I underwent weekly chemotherapy, followed by five weeks of daily radiation treatment at Ann & Robert H. Lurie Children’s Hospital and Northwestern Memorial Hospital in Chicago. At the age of four, I also had cataract surgery. The long-term consequences of my treatment included chronic dry eye, poor vision, loss of eyebrow and eyelash hair, noticeable changes to my facial features, and severe dental and jaw issues.
Once I was fully done growing in 2018, I was hopeful to find a plastic surgeon who could help improve my quality of life. I was fortunate to work with a team of specialists at Lurie Children’s Hospital in Chicago, including an oral surgeon, orthodontist, dentist, and plastic surgeon. After coming up with a treatment plan, I decided to begin my treatment once I was near the end of my college career. In 2022, I began braces treatment for two years in preparation for jaw surgery and had my wisdom teeth removed as part of the process. Although my bones healed well, my oral surgeon noticed differences in bone density and limited bleeding—effects of prior radiation. Due to radiation scarring, I also developed a muscle band inside my cheek that restricts my ability to open my mouth fully. The initial goal of jaw surgery was to correct my jaw’s asymmetry, as I cannot bite on my right side. However, my family and I took a conservative approach and sought multiple medical opinions.
I traveled to Cleveland Clinic and Texas Children’s Hospital to explore expert guidance. Many specialists advised against jaw surgery due to the risk of osteoradionecrosis and limited experience operating on radiated bones. Additionally, surgery could have pushed my eye even further back. Based on this, I made the difficult but informed decision to forgo jaw surgery. Instead, I completed my braces treatment and chose a removable denture until I could find an oral surgeon with the right expertise. I graduated from Iowa State University in 2023, began working in accounting in the petroleum industry, and now I am preparing to go back to Iowa State to receive my MBA. Now, in June of 2025, I’ve found a doctor in Chicago with extensive experience in prosthodontics and radiated bones, and I am hopeful that dental implants—my end goal—are finally within reach.
Throughout my teens and even today, I have received hurtful comments about my appearance due to the lasting effects of radiation. It’s hard to hear, but my advice is to keep your head up and be proud of your differences—they are your battle scars. I believe God gives His toughest battles to His strongest warriors. I am proud to be an empathetic, strong-willed individual who refuses to let cancer define me. While the emotional and physical challenges of living with the long-term effects of cancer can be overwhelming, I’ve learned to accept and live with these challenges by focusing on what I can control and letting go of what I cannot. Throughout the years I’ve volunteered and spoken at events hosted by the American Cancer Society, Living Well Cancer Resource Center, and the Kick-A-Thon fundraiser. Now that I am older, I have found passion in helping others by sharing my story to raise awareness and build connections. I look forward to becoming more involved and continuing to connect with others impacted by sarcoma.
Words of Wisdom:
My words of wisdom to others affected by sarcoma is to take your time, be thorough in your research, and don’t rush into any major medical decisions. If I hadn’t sought second and third opinions, I may have gone through with surgery that could have resulted in greater harm than good. Trust your instincts and advocate for yourself. Cancer was the worst and best thing that has happened to me. The worst because of the pain my family had to go through, the side effects I live with everyday, and nasty comments that are made. However, the best because it has taught me to be a stronger person, have a big heart, and to be grateful everyday. What I would tell my younger self and to others affected by sarcoma is to never compare yourself and your journey to others, and to always look for the good things in life.
Role of Sarcoma Foundation of America:
Recently, I went to my first cancer support group, which in turn made me realize I want to get more involved with people that have gone through what I have went through. Thanks to the Sarcoma Foundation of America I found others sharing their story, which has opened my eyes to being an advocate and help others. My journey has been one of resilience, uncertainty, and growth. And while sarcoma may have changed my life, it has also introduced me to a community that helps bring people together every day. As I continue to move forward—sharing my story, supporting others, and pursuing new treatment options—I appreciate the support from the Sarcoma Foundation of America.
