I still remember our first time setting foot in an oncology clinic as if it were yesterday. I wasn’t used to seeing my fearless and adventurous mom, Karen, who just a few months ago had been ziplining across cliffs in Hawaii, afraid. Listening to the doctor explain the bone marrow biopsy she’d be undergoing on that fateful day, I wondered if my mom felt no choice but to be strong. Little did we know that inconceivable strength would turn out to be her second nature.
It was March of 2020. My mom was only 49 years old, and the pinnacle of health. Fit and athletic, she had recently opened an American Ninja Warrior gym, where she coached classes and trained alongside my sister Madelyn. The cold and sterile clinic felt miles away from the colorful summer days spent scraping tile to prepare for our grand opening, filming submission videos together until 3 am, and conquering obstacles to the sound of her buoyant cheers. Yet something was wrong with her bone marrow. All of her mammograms over the years, including the one from the week before, had come back clear. I remember our relief after we’d received the results- at least it’s not breast cancer. Her only symptom, persistently swollen lymph nodes, had been written off by her doctor as a result of being fit and thin. Her abnormal blood counts had been ignored for almost two years, and it was only after they began to spiral incredibly out of range that she had been referred for the biopsy.
That biopsy would come to diagnose her de novo with stage 4 invasive lobular carcinoma- a term none of us had ever heard before, but that all at once upended our lives. Though she had dense breast tissue, my mom had never been referred for additional imaging. After a repeat mammogram and ultrasound came back clean, the primary ILC was finally found by MRI. We were told that it had been smaller than a fingernail, with only miniscule areas of invasion. Yet that had been enough for it to colonize every one of her disregarded swollen lymph nodes and much of her bone marrow. The day she received the results, she showed no trace of fear, taking me and my sister out for lunch and telling us with a smile that everything would be ok.
As she began treatment, her unfaltering strength and optimism never wavered. Alongside my sister, who made it to the national finals, my mom competed on American Ninja Warrior to share her story and inspire others facing a similar real life obstacle to keep fighting and achieve things they never thought they would be capable of. She took us to San Francisco to bike across the Golden Gate Bridge, and back to Hawaii, this time to rappel down waterfalls.
Our courageous and amazing mom passed away in 2024 from a rare form of metastasis that, like her original tumor, never appeared on imaging. One thing I know about her is that, even now, she would want her story to be one of hope- she always believed that someday a cure would be found for mILC. Despite being incredibly common, ILC is drastically underresearched, and from the day of her diagnosis, I resolved to become a part of that change. As I now start my PhD with the aim of pioneering CAR T cell therapies specific for ILC, I wish more than anything that she was here to see it, but I’ve realized that the unconditional love she had for us has worked its way into every fiber of my being. As elusive and hard-wrought as it may be, the hope she had remains. I’ve resolved to someday be the one to finish her fight so that her strength can be what saves somebody else from going through what she did. I’m excited to get involved with LBCA and share her story the way I wish she had gotten the chance to. I hope that it can inspire others to learn more about signs and symptoms of ILC through LBCA’s amazing resources, and to support ILC research and advocacy efforts so that a cure can eventually be found.
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