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Stories of Hope

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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.

Amy Ohton

San Diego Family Takes Action for Awareness

My husband David’s journey with MDS began in April 2014, when it was discovered almost by chance while we were on vacation. David was bitten by a brown recluse spider and had a very severe reaction to it. He had to be hospitalized, which is when he got his first blood test in years. The doctor noted that his blood counts were low and, while he didn’t rule out that the spider bite might have affected the counts, there was a possibility of myelodysplasia. It was a ten-day hospitalization, during...

Dylan Martin

MDS Patient Becomes a Role Model

My name is Dylan Martin. I am 24-years old and I was diagnosed myelodysplastic syndromes (MDS), or, at the age of 17. It is familial MDS - the cancer runs in my family. When my mother, Leigh Ann, was first diagnosed, doctors told her she would never have to worry about my brother and I having it. Unfortunately, the doctors were incorrect. When my brother, Patrick, was 19, he was also diagnosed. About a year and a half ago my grandmother, Mary, found out that she had MDS.  According to the...

Ellen O. Kalinosky

Biting into the Elephant

I believe that a story is the shortest distance between two people. While this is my story, it is not just mine, and I did not do any of this alone. In April 1983, my husband Joe and I were 25 years old and attending to the required pre-marital blood work. Next thing we knew, we were sitting in a doctor’s office because my blood counts were abnormally low. They told us there was something wrong, but they didn’t know what it was. Referring us to a hematologist/oncologist, we were told I would...

Shirley O’Brien

A Remarkable Response in a Clinical Trial

In February 2012, I was diagnosed with myelodysplastic syndrome (MDS), a disease that has no cure except for a stem cell transplant. Because I was in my mid-70s, a bone marrow transplant wasn’t the best option. At the time of the diagnosis, my spouse, Jim, and I had been retired for eight years as professors from the University of Arizona, and we were enjoying busy lives performing at festivals, singing and accompanying ourselves on our digital accordions. We had planned a cruise in less than...

Jim Westmoreland

Jim Westmoreland’s Path to a Clinical Trial

James Westmoreland, age 78, of Cookeville, Tennessee, is a retired Associate Vice President for Information Technology Services from Tennessee Technological University. Here, he recounts his story of how his decision to attend a local blood drive eventually led to his participation in Phase 1 of a clinical trial study at the MD Anderson Cancer Center in Houston, Texas. How did you first learn about a clinical trial? Finding out I had a problem happened in an...

Kathryn Bauer

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...

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...

Rosalie Rifkin

Rosalie Rifkin, Active Grandmother from Tarzana, California

I was diagnosed with MDS in about 2003 at age 63.  I am now 72 years old and will be married 52 years in June.  I have not taken medication for the last three years.  I go to a wonderful doctor at UCLA who is doing research on MDS.  I feel fine and I am not excessively tired.  My hemoglobin is only 7.2, but my doctor says that if I feel alright, I don't need to take any medication. I get up early every morning and walk three to five miles.  I play tennis, go clogging and hike.  I also go to a...