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Allen had a gratifying life.  He had a wife and a two-year-old, living on a farm, working in the Post-Anesthesia Care Unit at the teaching hospital.  He exercised, ran, hiked, hunted, fished, and more, enjoying the outdoors, his family, and his career.

In January, he had the worst case of the flu he had ever experienced.  The 104-degree fevers lasted several days.  He recovered enough to travel to Europe on a scheduled family trip, finally feeling up to a 10-mile hike at the end of the visit.

My life before I was diagnosed with

She was a sophomore in high school.  Before she could try out for Cheer squad, she had to have a physical.  

The routine Complete Blood Count revealed a problem.

Webb was in university, playing soccer, when he started noticing a rash and breathlessness during a run.  He’d never had either symptom, particularly since he was in such good shape, playing soccer since the age of three.

When I was diagnosed with Severe

When Shauna was diagnosed with MDS, she knew she would have to leave her home in Alaska for treatment.  She chose to move to North Carolina where her extended family lived.  With access to specialists there, and having a supportive network, this proved to be an excellent plan.

“OK,” said Dr. A, as he pivoted away from the screen. “You don’t have to come back anymore.”

By the time he was 10 years old, Xisto had earned a Black Belt in taekwando. He was traveling to, and winning, competitions.

Yet he was tired enough to fall asleep at unusual times.  Then the petechiae developed, all over his feet and hips.  Multiple doctors assumed this was a rash, and since he didn’t show signs of illness, he continued with his busy life.

“You must go to Children’s Hospital now.”

Ninth grader Patrick McLaughlin was surprised, but followed his mom’s lead, who calmly drove to the Emergency Department while disguising her fear and confusion.

Earlier that week, while Ellie was on a business trip, her elder son, Liam, called. “Mom, Paddy’s still sleeping after early dismissal.”  It was 8:30pm. At that moment, she knew that she needed to take him to the doctor.  She flew home as soon as she could, picked Patrick up at track and field workout, and dashed to the pediatrician’s office. 

I am thrilled because I have already written two articles for AAMDS and am now writing a third one at their request. I am so grateful to still be well enough to do this.
The first article, written in 2017, talked about my initial diagnosis in 2010 of MDS del5Q. MDS is separated into 5 categories and typically patients live the longest with this extremely rare type.