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.
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 than patient. You also have mirrors. I remember the mirror in my hospital room bathroom, which I
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 after we moved, it was Canadian Thanksgiving and we had my whole family over for a feast. Everyone…
Retired MDS Patient Living Life to the Fullest Since Transplant
I retired from Dun & Bradstreet, after 35 years of working all over the US and Europe as a business analyst and Vice President of Operations and Data Acquisition. I was living the life I had always aspired to -- traveling, volunteering for a number of non-profit organizations, taking the occasional consulting job, enjoying a few classes at the local college, and just having fun. Then, in August 2009, I had a blood test and it showed something was off with my white and red blood cells. I had a repeat blood test in September and it improved slightly, but my doctor still wanted me to see a…
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 chromosomal abnormalities and I was re-diagnosed with MDS at age 43. In 1998 my only options were
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 memories from when they were only two years old. I, like you, am no typical twenty-two year old. When I was just…
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 21 st 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 was initially diagnosed with asthma, but further tests revealed that it was aplastic anemia. “My workouts saved my
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 respite while the family decided what to do. Faced with an illness she had never heard of before
Mary Miller: Beyond Watch and Wait - A Mind, Body, Spirit Approach to Living with MDS
In 2005 at age 70, Mary Miller of Doylestown, Pennsylvania was diagnosed with MDS. Now 77, she says of her diagnosis, “My initial reaction was that I had never heard of it, so I looked it up online and scared myself half to death!” Like many MDS patients, the first indication there may be a problem came from experiencing significant fatigue. “I was tired and cold all the time, and my hair began falling out. At first, my primary care physician thought the problem was low thyroid and prescribed medication. However, additional blood work showed an anemia that could not be treated with B-12 or
Kyle Malmstrom – Saved by Identical Twin, Young Aplastic Anemia Survivor Literally Brings Comfort to Others
Written by Kimberly Malmstrom Our son, Kyle, was a normal active 11-year-old who enjoyed climbing trees, swimming, and running. He loved to run around and play with his friends. The first week of school last fall was normal for Kyle. He was excited to see friends and meet his new sixth grade teachers. However, throughout that week, he developed large bruises. Some had known causes - others did not. Kyle then noticed purple dots (petechiae) on his legs. By Saturday of Labor Day weekend he was covered with the dots. Our pediatrician said we should take him directly to the emergency room at…
Luke Gane, Aplastic Anemia Survivor and UCLA Bruin
At the time, Luke Gane considered himself a typical sophomore. It was July 2008, and Luke was getting ready for the all-important junior year of high school football season. He had his wisdom teeth removed and afterwards, found himself spitting up blood. It was chalked up to a side-effect of the surgery. Little did Luke know, his health was in jeopardy. In the days ahead, Luke became fatigued; shortly thereafter, a 2-hour nose bleed turned into a trip to the emergency room. After a series of blood work and a bone marrow biopsy, Gane was diagnosed with aplastic anemia. Aplastic anemia is a…