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.
“My labs didn’t tell the whole story” Jen’s Aplastic Anemia Journey
Jen had a great life. She was married with two children, and she’s just transitioned from teaching to school counseling. At 41, life was busy yet wonderful. Her symptoms were unusual, but not alarming. The leg pain was new, as was the bruising. Then fatigue set in, far beyond usual tiredness from her schedule. A visit to the doctor did not offer a definitive diagnosis. They suggested it was her condition with Hashimoto's thyroiditis, but with the new bruising, they ordered labs. It was February 2022. The following day, the doctor herself called, asking that she repeat the tests. Jen also
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 same time, his
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 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 Aplastic Anemia. With her mom by her side, family and community helping, she discovered her way through rigorous treatment. Laura was a passionate mom. She managed her
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, strep, and mono. After…
On her Way to Medical School - Life Paused, Not Stopped, by Aplastic Anemia
My life before I was diagnosed with Aplastic Anemia 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 specialty. For a few years, I had been traveling off and on as a travel nurse, but I was excited to be back and begin a new chapter with my fiancée as newlyweds. When I finally arrived home on Christmas Eve, I began to experience an audible pulsing behind my ear. My family mentioned that I looked pale. I was increasingly
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 parents, Xinyi had never had any health problems. She was very close to her family. Although she and her
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 Department at his local hospital. The local hospital ran regular blood tests. The results showed that all…
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 easily, had severe headaches, stomach upsets and muscle pain. My vision and memory were not as they
“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 lasted for a full year. Then she was prescribed Cyclosporine, but she was still transfusion-dependent in…
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 years of disease treatment, and I was used to mounting terror leading up to my appointments. Waiting…