Ty & Michelle Meadows

Patient & Caregiver

Juvenile Xanthogranuloma (JXG)

Michelle first learned of Histiocytosis after her only son Ty, then 9 months old, was misdiagnosed with pneumonia. Ty was treated for pneumonia for a week and a half and he didn’t get better, so they dug deeper. A large tumor was found on his lung. For a month they lived at the hospital while doctors tried to diagnose Ty. He went through multiple surgeries and procedures, including a blood transfusion, heart surgery, chest surgery, and biopsies of his bone marrow, his spine, and the mass. They 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 he had. For two weeks, Ty needed to be kept sedated and on a breathing machine.

On November 29, 2013, the day after Ty’s first Thanksgiving, the doctors said that they had waited as long as they possibly could and they had to treat Ty with something even though they risked making him worse. Later that day, Ty was diagnosed with mediastinal JXG. Yes, the same thing we were originally told didn’t grow on internal organs. Ty began chemotherapy. After 12 weeks of weekly chemotherapy and steroids, the mass shrank to almost nothing. Ty continued chemo for a year. So far, the JXG remains stable, but on the day Ty was diagnosed, Michelle vowed never to stop raising awareness and research funds for histiocytic disorders.

Today, Ty is a fun and very funny 12 year old who loves rock climbing, playing video games, and creating Roblox games. He is in 7th grade and Michelle can’t wait to see what he does next!

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