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, my 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 my parents 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. I began chemotherapy. After 12 weeks of weekly chemotherapy and steroids, the mass shrank to almost nothing. I continued chemo for another year and celebrated my last chemo on November 19, 2014. So far, the JXG remains stable.
Now, I am six years old and like other kids, I love fishing, Minecraft, Legos, Star Wars, and scary things like sharks and monsters. But unlike other kids, I also celebrate milestones like being chemo-free for 5 years and remission or “stable with no active disease” for 6 years.
We have found only one reference that states a statistic for systemic JXG. The statistic is one in 10 million. That means only 32 people in the United States are diagnosed. We were lucky. For this reason, spreading awareness is so important to us. If we can save one life or can help one family get their diagnosis before being told "we have waited as long as we possibly can," it will be worth everything. Finding a cure is our ultimate goal.
Histiocytic disorders are a group of diseases that occur when there is an over-production of white blood cells known as histiocytes that can lead to organ damage and tumor formation. This group is made up of a wide variety of conditions that can affect both children and adults.
While the search for more effective treatments and, ultimately, a cure continues, the Histiocytosis Association is dedicated to supporting and empowering the patients and families who live with these devastating diseases every day.
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