My Histio Journey

I was diagnosed with Histiocytosis two weeks after my fourteenth birthday in March of 2018.  While they were looking for the cause of my illness; they discovered that I also have Lupus, Juvenile Arthritis, and Macrophage Activation syndrome, so my treatment plans were expansive. I underwent chemo, steroid treatments, and dialysis for my Histiocytosis which I am currently undergoing Actemra treatments for my Juvenile Arthritis. Truthfully, I don’t think I understood the weight of my diagnosis until two years had passed, and I was still comparing my body, emotional state, and abilities to the kid I had been before my medical trauma.

Although I had been experiencing symptoms for months and even had a discussion with my oncologist about histiocytosis, neither myself nor my doctors or family members saw it as a possibility considering it is so rare. On that day, I went in for an MRI (magnetic resonance imaging) to exclude certain cancers, and I rapidly lost the ability to walk and was experiencing constant vomiting. My doctor decided to go ahead and test my bone marrow sample that same day, and as we were waiting for the results, due to a really high fever, I seized and went to a medically induced coma. Following this, I had mass organ failure, was put on life support, had an incomprehensible inflammation count, and my parents were told that my chances of surviving were 0.3%. 

From my perspective, I had just come home from my 8th-grade camping trip and was at the hospital to take another test. I had been feeling weak that day but that had been the usual as of late. Then I woke up in a body that didn’t know how to walk, talk, or eat. For the majority of my life since that day, I have felt like an imposter. I took over the life of a 14-year-old girl who was the first female football player at her middle school, homecoming queen, basketball captain, a track star, and an honor roll student. She wanted to get into college on a track scholarship but was wary of pursuing a stem career while being a professional student-athlete. She had a crush on a classmate but wouldn’t admit it, and she loved dressing up but hated the attention that came with it. I woke up and I was no longer her, and when I realized I couldn’t turn back time, I felt like I’d let her down.

 It’s been a year since I decided I didn’t want to live in her rainbow anymore. Although she was strong, beautiful, and resilient, I wanted to prove to both myself and her that I can be too. Through talking with other survivors, evenings in the library, adventures with old friends, listening to my body, being consistent with my schedule, and time management, I’ve created a sustainable lifestyle in which I can now gaze at her rainbow with pride.

I am unable to think of a way in which Histiocytosis hasn’t affected me; it changed my entire life. It introduced me to a network of cancer survivors who continue to inspire and encourage me to be better and treat every person and opportunity with the care and respect that had been given to me by doctors, nurses, caregivers, and complete strangers. It has enabled me to be kinder to myself and to slow down. I learned to appreciate sunsets, people, and music much more than I did before. While Histiocytosis may not be the kindest preceptor, it is the most effective. 

If you have questions about Histiocytosis or are concerned about a past or future diagnosis regarding Histiocytosis, Lupus, or Systemic Onset Juvenile Arthritis I would love to chat with you, I can be reached at dunbar2k18@gmail.com.