What do you see when you picture an 8 month old baby? At 8 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 mass 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 2 weeks I needed to be kept sedated and on a breathing machine. For a month, I lived at Children’s hospital with my parents while Doctors tried to diagnose me. I had multiple surgeries and procedures including a blood transfusion, heart surgery, chest surgery, and biopsies of my bone marrow, spine, and of the mass itself. On November 29, 2013, the day after my first Thanksgiving, I was finally diagnosed with mediastinal Juvenile Xanthogranuloma (JXG). I began chemotherapy. After 12 weeks of weekly chemotherapy and steroids, the mass shrank to almost nothing. I continued chemo for a year and celebrated my last chemo on November 19, 2014, so far the JXG remains stable.
These days I still love dancing. I also love playing Minecraft, building with Legos, and riding my bike. I was lucky, but my parents cannot imagine how many have not been so fortunate. The number is unknown. It is because of how rare Histiocytosis is and the way the disease presented itself in me that my parents are raising funds and awareness for Histiocytic diseases, so that one day a cure will be found and no other child or family will have to suffer or lose their battle to these rare diseases.