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.
Jane Biehl, PhD
I Was Alone With MDS Until I Connected With Others on Social Media
I sat quietly in the oncologist’s office. The doctor confirmed that my diagnosis was MDS and calmly stated, “The average survival term for your kind of MDS is 104 months.” I felt the room spin.
I never have been healthy, and suffered from upper respiratory infections all my life. Kidney and bladder infections plagued me all through college, and I have had a severe hearing loss since birth. I had been diagnosed in 1986 with an IGA deficiency, meaning that I had insufficient immunity although...
Krissy Kobata
Confronting Challenges in Finding Matches for Multiracial Patients
34-year-old Krissy Kobata is a passionate patient and advocate/activist. Diagnosed in 2008 with MDS, she’s the epitome of resilience as she has waited for years to find a matched donor. She has devoted this time to helping other patients by enlarging the Be The Match® bone marrow registry. She’s directed numerous bone marrow drives and fundraisers, bringing thousands of new DNA donors to the national registry. However, her own path to finding a donor has been challenging and frustrating.
Her...
Barry Gore
I'm Like You: Barry Gore
As a young man, Barry Gore was a top-40 celebrity disc jockey, complete with an adoring fan club in the Greater Boston area. But like most first jobs, it lost its luster and he settled into sales and marketing while getting his MBA.
He became the owner of a prosperous machine manufacturing business that his son now runs. But when he was still in his fifties, a family history of heart disease finally caught up with him. Barry’s internist directed him to a cardiologist, suspicious that his...
Shauna McMillan
Alaskan Goes Home for Treatment and a Fresh Start
I tell people I'm unique - almost one of a kind. I am 40 years old and have recently been diagnosed with a rare type of MDS having an unusual deletion 12q cytogenetic abnormality, known MDS 12q (-), or MDS 12q minus. I was diagnosed in February of 2015 at age 38, however my health struggles began several years before that. I had been living in Alaska for nearly twenty-five years. In 2008, I was diagnosed with lymphocytic colitis (also a rare disease for someone of my age). I was referred to a...
Vincent Rusak
I'm Like You: Vincent Rusak
Vincent Rusak of New Kensington, PA, traveled extensively during his 26-year career as an expert electronic service technician. For 15 of those years, he was also a regular blood donor in his community.
His father’s quadruple bypass surgery, as well as a deep compassion for his fellow man, were Vince's motivation for contributing to his local blood banks every six to nine months. Little did he know that this selfless habit would someday save his life.
One day 13 years ago, Vince went to give...
Thomas Howlett
2014 Matthew Debono Scholarship Winner Thomas Howlett
Thomas is thankful he has a future. He wasn’t so sure when in March 2011 he was told as a high school freshman that “he wouldn’t be playing paintball for a while.” Thomas was diagnosed with MDS that quickly progressed into acute myeloid leukemia. His family was told that his only chance for survival was a bone marrow transplant. As an only child, the doctors had to find an unrelated match and they were fortunate to find a 24-year-old female from Minnesota who saved Thomas’s life. Thomas and...
Annette Lysan
2014 Matthew Debono Scholarship Winner Annette Lysan
In March, Annette had the honor of singing a solo for her high school senior show. She chose to sing “I Was Here”, a song recorded by the group Lady Antebellum and others. The lyrics for the chorus start with “I wanna do something that matters – say something different – something that sets the whole world on its ear – I wanna do something better with the time I’ve been given.” She considers it her personal anthem. Nineteen-year-old Annette has overcome several obstacles since she was...
Jane Massey
An Unusual Route to Diagnosis
Although it sounds strange, I am beginning to believe that breast cancer possibly has saved my life. In October 2015, I was diagnosed with stage 2 lobular carcinoma of the breast. My cancer was found during my routine mammogram. I opted for a bi-lateral mastectomy and then had 33 radiation treatments in early 2016. I saw my oncologist every month due to my treatment and she ran blood work every time. My numbers had been a little off for some time prior but nothing too worrisome.
However, my...
Sara Massey
A Daughter's Perspective
My mom is a pharmacist and I currently attend the University of Missouri-Kansas City School of Pharmacy. When she was diagnosed with breast cancer last year, I was shocked and sad but I wasn’t scared. To me, breast cancer was one of the “normal” cancers. I remember the exhausting days and weeks following her surgery and radiation treatments, but we happily got to celebrate her return to health.
After a few short cancer-free months, doctors began to investigate “weird” blood levels. Mom would...
Tom Coccagna
Doing His Part to Assist MDS Research
The first indication that something was wrong came with a routine blood test. Lots of H's (high) and L's (low) dotted my CBC (complete blood count). My primary care provider said it probably was ‘nothing’, but I might want to follow up with a hematologist just to be sure.
I was thirty-nine, a husband and father of three girls. I was an avid runner who ran 10k races, half marathons and full marathons. I had a healthy diet, didn't drink or smoke. I wasn't supposed to be sick. I thought it was...