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Navigating Leukemia

By Caoilinn (pronounced “Kellen”), a Children’s National patient
Caoilinn resized

My name in Gaelic means “mighty warrior.” I faced my first real battle when doctors at Children’s National diagnosed me with childhood acute myeloid leukemia at age 15. I was in 10th grade. My life was all about friends, soccer and beach volleyball. I started chemotherapy and planned on being in the hospital for a month.

It went well at first, but my body was so overwhelmed that my organs began to fail. I ended up in the pediatric intensive care unit (PICU) for 31 days. My mom still remembers the kindness of the PICU staff. They talked to me constantly, even though I was unconscious most of the time.

When I was well enough to move to the oncology unit, the staff helped me connect with other teen patients. Art therapists invited me to the art room to dye paper lanterns and paint with watercolors. It was hard watching my friends having fun without me, on social media. They played sports, went to homecoming and got their learners permits. I was in the hospital 50 miles away and couldn’t even walk to the bathroom. When I felt down, art therapy and the people around me on the 4th floor gave me a reason to get out of bed. I finally went home after two months.

After two years of treatment and then a year of remission, my cancer returned. I had a bone marrow transplant. The cancer came back again 18 months later. This time, my brother donated bone marrow for a second transplant. I also opted into a T-cell immunotherapy clinical trial at Children’s National. This treatment involves using T cells to kill the cancer. It is easier on my body than chemo and has fewer side effects. Another benefit is that my participation in the research might help other young patients in the future.

I still get treatments and have a few surgeries ahead of me, but I feel a lot better. I’m 20 now and back to spending time with my friends, working out and going to the beach. I also look forward to college. I hope to be a commissioned officer in the U.S. Marine Corps one day. The people at Children’s National put so much effort into keeping me alive, including research to discover new and better treatments. I can’t wait to make a positive impact on the world, like they have had on me and my family.