In the summer of 2014 I noticed ongoing bruising all over my body. At first, I thought it might have to do with my diet (low iron), but soon I noticed a new kind of mark on my skin, almost having a bulls-eye appearance. By end of summer I knew I had to do something about this.
In October 2017 I was hospitalized for extreme dizziness, vomiting, fatigue, bruising, and shortness of breath. As an active, healthy person, having these symptoms was worrisome. My husband took me to the emergency room, where they performed a series of tests. We waited for my results, and a nurse looked at me and asked if I realized how pale I looked, and neither my husband or I had even noticed.
In May 2017, life was good and I was “living the dream”. I had been working full time for about a year after graduating from the University of Kentucky. I was living in Columbus, Ohio, working for an organization that supports children with childhood cancer and catastrophic disease. Everything was on track for my future.
I started to feel sick. At first it seemed like flu-like symptoms of fatigue, racing heartbeat, lack of energy and some bruising that just wouldn’t go away.
In December 1992, I was an 8-year-old, halfway through second grade, when strep throat and a urinary tract infection just wouldn’t go away. A late-night trip to the emergency room revealed dangerously low levels of platelets, which explained this and the severe bruising all over my body and rashes on my joints. My platelets were under 2,000 and I was supposed to have 250,000.
I never thought I would be diagnosed with cancer. I taught exercise classes, walked every day, ate a Mediterranean diet, and paid attention to products I used on my skin. I became a certified health coach and taught healthy living classes.
I sat quietly in the oncologist’s office. The doctor confirmed that my diagnosis was MDS and calmly stated, “The average survival term for your kind of MDS is 104 months.” I felt the room spin.
I never have been healthy, and suffered from upper respiratory infections all my life. Kidney and bladder infections plagued me all through college, and I have had a severe hearing loss since birth. I had been diagnosed in 1986 with an IGA deficiency, meaning that I had insufficient immunity although I was treated symptomatically with antibiotics when needed.
When Emma was still being seen at the NIH twice a week, we were talking with her physician’s assistant about her t-shirt fundraiser and her Facebook group. After hearing what Emma was doing with these activities, they asked her to be their new pediatric patient advocate, helping newer pediatric patients with advice on how to cope with treatments. This seemed to be another way we could help.