web exclusive

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

“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. 

Tiffany was putting her degree in psychology to work. A Bethune-Cookman University graduate, she was working her dream job in a facility in Jacksonville, Florida.

Hello this is Sahar, a woman who fled her homeland followed by the failure of her bone marrow bone marrow: The soft, spongy tissue inside most bones.

Lisa loved her work.
As a Senior Teacher in the UK, she dedicated herself, her time, and her passion to her job.  An average week saw her working 70 hours.
Following a beach holiday in the Canary Islands, she developed a strange rash on the top of her feet. A colleague urged her to go to the doctor.

On October 24th, 2022 I received the phone call that would change my life. Enjoying a ten minute bubble bath, I initially ignored the vibrating phone along the tub's porcelain edge. My husband had recently embarked on an overseas business trip, and for the first time I was parenting as a single parent. Exhausted, my throat sore, I had just put my seven month old son to bed and wanted nothing more than to snuggle into my cozy bed and sleep. I never did get to sleep. 

The morning of 9/11/01 was a doubly surreal experience for me. I was waiting for an appointment with my doctor at M. D. Anderson's Leukemia Center in Houston while chaos erupted in America. The waiting room was packed, as usual, with people at various stages of their own life-threatening events, and I was struck by the relative calm in this room compared to the state of disbelief and panic playing out on TVs throughout the country.

My name is Marie-Eve. I’m the mother of 3 boys, Milan (17), Nando (14), and Kirill (12). In early 2021, I’d been noticing marks on my oldest son’s body — undeniably and inexplicably large bruises — as big as full moons. My mind would spin in a million different directions, trying to convince myself nothing was amiss. Milan kept telling me he was fine. “I’m okay, mom. Stop worrying.” Then, one morning, he left for the hockey rink, sopping up blood from his nose and gums, for no apparent reason. It was March 11, 2021.

In Sept 2021, I had my stillborn son, Nolan. My blood count levels at that time were normal (250 platelets, Hemoglobin Hemoglobin: A protein in the red blood cells.