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.
“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 retinal specialist. As my concern grew, I still could never have predicted the severity of what was
I'm Like You: Briana Donis
Homecoming queen and top student Briana Donis always wanted to go to the University of Texas at Austin. “I was having a pretty awesome year. I was very well known at school and I had a boyfriend.” She had just been accepted at the school of her choice when she noticed how really tired she was all the time. And then the bleeding started. “When I would cut myself, like it would be just a little paper cut, I would fill up a napkin with blood. I thought it was really weird.” It was really severe aplastic anemia, and the 18-year-old had no way of knowing how serious it was. “I was like, okay, so…
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 platelets were almost nonexistent, and the doctors could not believe I actually walked into the emergency
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 his family hope to meet her some day, but for now communicate through Facebook. The transplant…
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 diagnosed as a toddler with MDS and had a bone marrow transplant at age two-and-a-half. Her challenges have…
I'm Like You: Ricky Smith, Jr.
29-year-old Ricky Smith, Jr. has had bone marrow failure disease for half of his life, beginning with aplastic anemia at the age of 14, followed by PNH when he was 23. "I just wanted to live the normal life of a teenager," said Ricky. But it just wasn’t meant to be. When he was taken to the hospital to find out why he’d become so weak, he passed out because he had so little blood in his body. The teenager who’d been so excited about high school and sports became angry and depressed as he struggled to understand his medical crisis. It took doctors a year to get Ricky’s aplastic anemia under
2013 Matthew Debono Scholarship Winner Kellie Day
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 nursing – a degree for which she is inspired not only by her own experiences, but also the…
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 included frequent blood tests, scans and doctor visits to monitor her progress. By the middle of
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 stumped doctors from Rondebosch, South Africa to Boston, from Atlanta to Oxford, England. We were…
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 oncologist began to notice that my numbers were not improving- actually there was a continual…