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.

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...

Heather Gouldsmith

Gouldsmith Family Pulls Together for Gabby

In June 2011, my daughter Gabby was seven, and we had just relocated from Las Vegas to Reno, Nevada. She seemed tired and had alarming bruises on her shins. She also had a persistent ear infection and I noticed red dots (petechiae) on her shoulders. I’m a nurse and work for a pediatrician, so seeing all this in a short time set off alarms for me. I took Gabby to Dr. Robin White's pediatric practice (where I work) for further examination. Dr. White became very involved in Gabby's care and even...

Jeff Paccione

“Don’t worry, I’m not going anywhere.”

On April 15, 2007, my husband Jeff, age 39, tucked our two and three year old boys into bed. He suddenly yelled down to me in a concerned voice, “Honey, my vision is slightly distorted, and it must be a migraine. I’m going to lay down for a bit.” I was not extremely concerned since Jeff had gotten migraines in the past. But the next day, the other eye was also adversely affected in the same way. We sent the boys to day care, and went to the eye doctor, who immediately referred Jeff to a...

Denise Beauchemin

My Life is Making a Difference

Beginning September 2012, I just wasn’t feeling quite right. I was increasingly fatigued and there were some perplexing bleeding incidents, as well. After many months I experienced partial vision – just little areas of vision that were blank. Internal bleeding in the eyes was causing this, and my eye doctor knew it was serious and even thought it could be leukemia. Blood tests were done, and when my doctor saw the results he called and told me to go to the emergency room right away. My...

Emma's Story, Part 1

Solving a Diagnostic Mystery

In January 2016, my 9 year-old daughter Emma turned yellow. After seeing her regular doctor, we were sent straight to the hospital. They found that her liver enzymes were extremely elevated and sent us to a second hospital. After extensive blood panels and scans, they still couldn’t determine the cause of Emma’s liver inflammation, and so the process to find her a new liver began. We returned home because of signs that Emma was doing better, but we had to follow a very stringent regimen that...

Rachel Ancer

South African Girl with PRCA Gets German Match

Our 8 year-old daughter Rachel was admitted to Groote Schuur Hospital in Cape Town, South Africa yesterday, March 6, to prepare for her bone marrow transplant. It is auspicious for us that she was admitted during Bone Marrow Failure Awareness Week. Two years ago we discovered Rachel has an extremely rare bone marrow failure condition known as pure red cell aplasia (PRCA). Her bone marrow has gone on strike and she’s not making red blood cells. What caused it remains a mystery, which has...

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...

Dominique Hughes

SAA Patient Contributes to NIH Research

I was 19 years old when I found out that I had low blood counts. At this time I was just starting college and also working three different jobs. I was having extreme stomach pains and abnormal periods. I went and saw my gynecologist and routine tests showed my low blood counts. I was then sent to the local hematologist who did my very first bone marrow biopsy. When the results came back, he said that he had never seen a biopsy that showed so much inflammation and didn’t know what to do at that...

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...

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