How Project 103 Started

When I was 16, I experienced severe abdominal pain that I convinced myself was a pulled muscle. As the night progressed, the pain worsened, and my mom and I went to the emergency room. That’s when I was diagnosed with pancreatitis. I was admitted to the hospital for pain management and hydration, and after a week, I was able to return to my usual routine of school and dance. I thought that was the last I would hear of that diagnosis.

Two years later, the pain returned. This time, it didn’t subside, and I was hospitalized again. It was my junior year of high school, and I missed most of the semester. I often felt fatigued, struggled to eat, and had frequent hospital visits to manage the constant abdominal pain. Genetic testing revealed that I had three gene mutations linked to chronic hereditary pancreatitis—a condition my family had never encountered before.

Since the care I needed wasn’t available in Colorado, my mom found Cincinnati Children’s Hospital. We traveled there during the summer, but after attempted procedures, the attacks continued. My medical team recommended a Total Pancreatectomy With Auto Islet Cell Transplant (TPIAT). I didn’t fully grasp what this surgery entailed, but I was ready to do whatever it took to regain a sense of normalcy.

The surgery was scheduled for September 13, 2022. During the operation, my pancreas, spleen, appendix, gallbladder, and part of my small intestine were removed. The surgery lasted around 15 hours , and after it was completed, my parents were finally able to see me in the PICU. The recovery was painful, and even with medication, it was a challenging experience. I spent a week in the ICU and additional time on the diabetes floor, learning to manage my new lifestyle. I stayed nearby for weeks of follow-up appointments with my medical team. After five weeks in Cincinnati, I was able to return home just in time for homecoming.

Although I made it home for homecoming, I wasn’t well enough to attend. I spent the weeks home on the couch and dealing with persistent pain and nausea. One night, I had to return to the ER, and Cincinnati arranged for me to be life-flighted back to their hospital. Another three-week hospital stay followed, during which a scope procedure revealed a partial obstruction. This led to another surgery. When I woke up, I learned I had been cut open again. I felt defeated, unsure if I could endure another recovery process. However, with the support of my team, I was eventually able to return home to Colorado for good.

When I returned home, I was finally able to complete my senior year with some sense of normalcy. The recovery process had its ups and downs, but meeting other TPIAT recipients gave me a sense of community and encouragement. Their stories inspired me to create "Project 103," an initiative to provide care packages to children undergoing similar surgeries. These packages aim to bring comfort and remind them that they’re not alone.

I’ll always remember the thoughtful note and gift I received from another patient before my surgery. It motivated me during the recovery process.