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.
Kendra Arvon
Thankful to Be Here and Alive
I was a very active 17-year-old when I got the news. It was October of 2005, the beginning of high school basketball season in my hometown of Beckley, West Virginia, when I became ill. I thought it was a really bad cold or even the flu, but I was used to being sick and fighting through it, so I didn’t think much about it. I started antibiotics while I continued going to school and playing basketball. I would start to feel better for a while, then BOOM, it would hit me like lightning again. I...
Brittany Springer
Aplastic Anemia Patient “Just Focused on Beating It”
In February of 2011 I was 22-years-old and attending Orange Coast College. One day I began to notice that I was bruising easily. My legs were covered in bruises by the time I went to my doctor. The doctor told me I was probably anemic and run down due to my work and school schedule. She ran a regular CBC blood test.
The next day, I was surprised to see I had missed a call from her. It was after five o’clock so I figured I would call her the next day. I was not feeling sick - maybe a little...
Robin Grapa
A spirit of adventure helps her live life to the fullest
I was a freshman in college when I was diagnosed with aplastic anemia. I didn't have a bone marrow donor match, so I opted for the ATG and cyclosporine treatment. After experiencing seizures, which are a rare side effect to the treatment, I began the slow process of recovery. I felt very blessed that my blood counts began to climb, and eventually leveled out around normal and stayed there ever since.
It was seven years after my treatment when my doctor mentioned "complete remission" to me. I...
Kellie Day
Kellie Day, Debono Scholarship recipient
Kellie was diagnosed with aplastic anemia in March 2005 when she was eleven years old. After two years of unsuccessful treatment, she was diagnosed with a second disease: PNH. Fortunately, she was able to receive a life-saving bone marrow transplant from her brother at St. Jude Children’s Research Hospital. This fall, Kellie will continue her undergraduate studies at Carson-Newman University, in her home state of Tennessee, where she will begin her sophomore year. She is pursuing a degree in...
Heather Putney
Heather Putney’s Trials (and Travels) with Aplastic Anemia
There is no shortage of milestones when you are healing following a bone marrow transplant. You have the inevitable counting of days; day 21: being discharged from the hospital; day 90: having fresh produce; day 142: spending the start of Thanksgiving by jogging a 5K, day 300: biking 50 miles with a custom BMT survivor jersey to raise awareness for marrow donation; day 365: my new first birthday and a goodbye to precautions and meds; day 380: returning to work as a health care provider rather...
Ashley Oakes
Ashley Oakes – Blessed to Have Her Son, Her Family, and Her Life
It has been two-and-a-half years since being diagnosed with aplastic anemia. In September 2010, my husband, Scott, and I moved home to Vancouver, British Columbia from Calgary, Alberta where we had been living for the previous three years. I was six months pregnant and so excited to be going back to the city where all our family lived to share this wonderful time with them. We moved into a little house a few blocks from my mom and settled in to await the arrival of our little one. A few weeks...
Ruth Cuadra
Long-term survivor and dedicated volunteer
2015 will mark the 17th anniversary of my victory over myelodysplastic syndrome (MDS). An unrelated-donor bone marrow transplant saved my life and cured me of the disease in 1998.
I was originally diagnosed with aplastic anemia, in 1996, when a routine checkup showed that my blood counts were at life-threateningly low levels. I was treated with the immunosuppressant called ATG and experienced some improvement, but could never get back to normal blood counts. Eventually I was found to have...
Chris Nein
Inspiring young survivors
Christopher Nein recently earned his fourth AA&MDSIF Scholarship award. The aplastic anemia survivor is attending Eastern Virginia Medical School in Norfolk, Virginia and was recently married. As part of his application for the 2012 scholarship program, Chris wrote the following personal letter to all children and youth currently struggling with bone marrow failure diseases.
In Chistopher's own words:
Friend and fellow fighter:
Most twenty-two year olds do not have vivid...
Eric Hodies
Eric Hodies – A Study in Attitude and Self-Advocacy
The Diagnosis
In 2002, 41-year-old Eric Hodies was a devoted triathlete, training for his 21st Virginia Beach Sandman Triathlon. He had competed in the event every year since its inception, and he was looking forward to another great race. But in the months leading up to the event, he noticed that he was getting slower and slower, despite the fact that he was increasing the intensity of his workouts. Ever attune to the signals his body was sending him, he went to a doctor. He...
David, Nicholas and Elizabeth Manley
Mother Tells How Son’s Aplastic Anemia Impacted Entire Family
A horrifying diagnosis
Barbara Manley found herself living every parent’s nightmare the night her two-year-old son, David, was admitted to the hospital for increasingly serious bruising. “The doctor said it’s either aplastic anemia or leukemia, and you’d better pray for leukemia. I knew leukemia was bad, so that was horrifying.” By the time of his diagnosis of aplastic anemia in January, 2002, David was dangerously close to spontaneous hemorrhaging. A blood transfusion provided some temporary...