At eight months, I loved to dance and listen to music. I was fascinated by wheels; I would stare down at the wheels on a stroller instead of enjoying the scenery during walks. I gave the BEST hugs. I also had a large tumor growing on my lung. The mass grew to be so big that I couldn’t breathe on my own and it blocked a major artery.

For a month we lived at the hospital while doctors tried to diagnose me. I went through multiple surgeries and procedures, including a blood transfusion, heart surgery, chest surgery, and biopsies of my bone marrow, spine, and the mass. My parents were told after the mass biopsy that the tissue looked like juvenile xanthogranuloma (JXG), but that JXG only appears on the skin, not on internal organs, so they didn't know what I had. For two weeks I needed to be kept sedated and on a breathing machine. Imagine not being able to hold your baby for two weeks.

On November 29, 2013, the day after my first Thanksgiving, the doctors told us that they had waited as long as they possibly could and they had to treat me with something even though they risked making me worse. Later that day, I was diagnosed with mediastinal JXG. Yes, the same thing they originally said didn't grow on internal organs. I began chemotherapy. After 12 weeks of weekly chemotherapy and steroids, the mass shrank to almost nothing. I continued chemo for a year. So far, the JXG remains stable.

Now, I am 13 years old and like other kids, I love video games, rock climbing, archery, and creating Roblox games. But unlike other kids, I also celebrate milestones like being chemo-free for 11 years and I already have to be monitored for cataract. 

My parents and I were lucky, so every year, we participate in the Histio Hike to fundraise and spread awareness. Please consider making a donation, so that one day, no Histio family will have to rely on luck.