Stories of Hope
To better understand the impact of bone marrow failure, we present stories told by the patients, parents, family members, and spouses who are living with these illnesses. Our entire community benefits from the insightful stories patients and family members share with us about their personal journeys.
Xinyi Yin
Watch and Wait? Xinyi's Patient Journey wtih Aplastic Anemia
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.
Xinyi was then referred to a pediatric hematologist. At the same time, she continued with her rigorous high school schedule, even though she’d been prohibited from Cheer. She didn’t really understand that the potential diagnosis could be extreme---leukemia or Aplastic Anemia---until the bone marrow biopsy.
The only child of loving...
Webb Kosich
Putting Treatment Behind Him: Webb's Journey through Aplastic Anemia
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 he came home for the holidays, his mom, a veterinarian, suspected the rash could be petechiae. In early January 2023, the symptoms progressed. He looked inside his mouth and saw several sores and bleeding. Startled, he asked his parents to take him to the Emergency...
Eman Al Salti
My Journey with Severe Aplastic Anemia: A Story of Hope and Resilience
When I was diagnosed with Severe Aplastic Anemia, my world turned upside down.
I had been living a very busy and active life between my 4 kids and family and my career. At home, I considered myself an engaged mother who managed all aspects of my kids’ and husband’s lives. And at work, I was working for Microsoft, a top achiever and award collector. I loved joy and laughs, music and dance, and even found time for volunteering.
I started to get really pale and fatigued, I couldn’t climb stairs...
Shauna McMillan
“Never Lose Faith!” Shauna’s Update
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.
Shauna began the ATG protocol in 2016. After completing this treatment, she remained transfusion-dependent. Yet she never gave up. Then, in September, 2017, she began a treatment regimen with Decitabine. This regimen...
Sarah Anders
Survivorship and Anxiety: Sarah's Update Eight Years Post-Transplant
“OK,” said Dr. A, as he pivoted away from the screen. “You don’t have to come back anymore.”
He said it without any great sense of ceremony. It was my annual appointment, about 4.5 years after my allogeneic bone marrow transplant for Aplastic Anemia, and I had had the usual panic leading up to the appointment.
I feel okay, but what if this fatigue is something more? If the constant colds I catch are a sign of something sinister?
My lifelong struggle with anxiety had been exacerbated by two...
Xisto Montoya
Now a Nurse, 10-Year-Old Xisto Survived Aplastic Anemia
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.
On the way to another competition, he was snacking on sunflower seeds. Suddenly, his gums began to bleed. Even now he remembers the...
Patrick McLaughlin
Teen Athlete's Normal Life Interrupted by Severe Aplastic Anemia and Lengthy Treatment
“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...
Jane Biehl, PhD
Never Give Up Hope
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.
I had a very insensitive oncologist who told me, right after the diagnosis, that the average life span was 104 months. I was...
Tiffany Wiggleton
Tiffany: “My Bone Marrow is Failing Me”
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. Then the diagnosis of Aplastic Anemia came out of nowhere.
An active student, Tiffany had been a cheerleader through school. After graduation she coached cheerleading until she landed her dream job.
One day in February she noticed a strange bruise on her back. At the same time, she had been noting how her menstrual cycles seemed...
Sahar Masoom
Surviving Loss: A Journey from Losing Homeland to Surviving Bone Marrow Failure
Hello this is Sahar, a woman who fled her homeland followed by the failure of her bone marrow within 6 months. I am a daughter, a devoted wife, a mom to two adorable children. I am an Afghan refugee, but today I stand as a survivor- having battled Aplastic Anemia and undergone a life altering bone marrow transplant.
"Life is a foray of mysteries," as expresses by Suleika Jaouad. I led a simple yet meaningful life in Kabul, a city renowned for its unfortunate tag as one of the most dangerous...