There is never an easy way of starting a story like this. Four year old Lily received her first cancer diagnosis at 18 months old. There were never any huge warning signs leading up to Lily’s cancer diagnosis. A week leading up to this, Lily started to experience stomach pain and constipation. It got to the point where Lily’s mom took her to the ER. At first they were told it was just constipation but in reality it was much worse. Three days later Lily went back to the ER. The doctors finally did some imaging and that’s when they found a large mass in her abdomen. That is the first time Lily’s parents heard the word Neuroblastoma. At first it was unclear that what Lily had was cancer. It would be about a week later that reality would set in for her parents and life became very different. Neuroblastoma is a cancer of immature nerve cells and can grow anywhere in the body. For Lily, this was in her abdomen. Lily then underwent six rounds of inpatient chemotherapy, one resection surgery, two bone marrow transplants, 12 rounds of sedated radiation, and six rounds of immunotherapy. Included in all of this was weekly blood draws, fevers, regular illnesses, and numerous scans. In September 2025, Lily was officially done with treatment and was considered to be in remission.
Just 2 months later, November 2025, Lily relapsed with Neuroblastoma. This time it was located in the right frontal lobe of her brain. Leading up to the second diagnosis, Lily was experiencing headaches that would wake her up at night. With Lily’s history, her mom and dad brought her into the ER where they immediately did more scans. That’s where they found the mass. About two weeks later, Lily underwent brain surgery to remove the tumor. The amazing Neurosurgeons at Children’s Hospital Colorado were fully able to remove the tumor. Lily then received six rounds of a combination of chemotherapy/immunotherapy. Once this concluded, they conducted more scans which revealed that Lily developed recurrent leptomeningeal disease. This was devastating to learn. It was decided to continue with 15 rounds of sedated high intensity radiation with 3 of those targeting specific areas that had active disease. After this concluded it was decided that Lily was in remission again. To prevent further relapse, Lily awaits clinical trials at Memorial Sloan Kettering in NYC. While Lily waits, she will receive a bridge treatment of chemotherapy through an Ommya reservoir. This allows the medication to go directly into her CNS via a port in her brain (Ommya Reservoir).
Despite having extreme health difficulties, Lily continues to be a light in everyone’s life. She is full of love, light, spunk and sass. She always makes people smile wherever she goes and she doesn’t let life slow her down. Lily is “spicy” but also extremely loving and kind. She enjoys running around, making new friends everywhere she goes, and playing. Lily is a shining example of bravery, strength, and resilience. She is constantly inspiring people to keep going; even on the hardest days. She laughs through the pain and fear. She always checks on her people to make sure they are okay. Lily is quick to check on her friends or other people.
Lily is my reason to keep going. To keep pushing through the pain and fear. She shows me that I can do anything despite what life throws at us. I want to be like Lily when I grow up.
