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.
Athletic Canadian Continues Studies while in Treatment for Severe Aplastic Anemia: Geordy's Story
Geordy’s youth was an active one. Baseball, Soccer, and Hockey filled his days, even competing in the Little League World Series!
He was active in his family’s church, too. When offered the opportunity to go on a Youth with a Mission (YWAM) program to Australia, he traveled from his home in British Columbia to participate. Once there, the spark of ministry became a calling, so he attended college in Saskatchewan to become a pastor.
When he returned to British Columbia in 2009, he found it difficult to find a position, so he began studying to become a psychologist. At the…
Active Middle-Schooler's Life Sidelined by Severe Aplastic Anemia - Phoenix's Story
Cheer, music, sports, plays, community. These dominated Phoenix’s life in the autumn of last year.
Winter break brought a different message.
Petechiae
Petechiae:
(puh-TEE-kee-ie) Small, flat red or purplish spots on the skin, caused by bleeding. It is often a symptom of a low platelet count.
and bruising led to a visit to the pediatrician. The message when they took her blood was, “You’ll hear from us in about 5 days.”
The phone rang the next morning with the message, “She’s in critical condition, take her to the Emergency.”
So began Phoenix’s journey with Severe…
Allen’s Journey with Aplastic Anemia, Part 1
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.
But by March 1, he was feeling ill again. This time, he tested positive for flu…
On her Way to Medical School - Life Paused, Not Stopped, by Aplastic Anemia
My life before I was diagnosed with
Aplastic Anemia
Aplastic Anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most…
was pretty busy! I was finishing up my travel nurse assignment in Washington and heading home for Christmas. I had plans to reunite with my fiancé, finish wedding planning, and get ready for my new job in a new nursing…
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
hematologist:
(hee-muh-TOL-uh-jist) A doctor who specializes in treating blood diseases and disorders of blood producing organs.
. 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…
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
petechiae:
(puh-TEE-kee-ie) Small, flat red or purplish spots on the skin, caused by bleeding. It is often a symptom of a low platelet count.
. In early January 2023, the symptoms progressed. He looked inside his mouth and saw several sores and bleeding.…
My Journey with Severe Aplastic Anemia: A Story of Hope and Resilience
When I was diagnosed with Severe
Aplastic Anemia
Aplastic Anemia:
(ay-PLASS-tik uh-NEE_mee-uh) A rare and serious condition in which the bone marrow fails to make enough blood cells - red blood cells, white blood cells, and platelets. The term aplastic is a Greek word meaning not to form. Anemia is a condition that happens when red blood cell count is low. Most…
, 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…
“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
protocol:
An action plan that describes what will be done in a clinical trial and how it will be carried out. This plan is reviewed and approved by a committee at each place doing the clinical trial. This committee is known as the Institutional Review Board.
in 2016.…
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
bone marrow transplant:
A bone marrow transplant (BMT) is also called a stem cell transplant (SCT) or hematopoietic stem cell transplant (HSCT).The procedure replaces unhealthy blood-forming stem cells with healthy ones and offers some patients the possibility of a cure. But for many patients, a BMT is not an option due…
for
Aplastic Anemia…
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
petechiae:
(puh-TEE-kee-ie) Small, flat red or purplish spots on the skin, caused by bleeding. It is often a symptom of a low platelet count.
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.…