The doctor found that her blood counts were abnormally low. It was then, at the tender age of 20 years old, that Rachael was diagnosed with myelodysplastic syndromes (MDS), a disease in which an abnormal bone marrow does not make enough normal blood cells for the body.
Rachael was referred to a hematologist, a physician who specializes in the diagnosis, treatment, prevention, and/or investigation of blood disorders, who said that she would need blood transfusions or that she could develop leukemia. The hematologist referred Rachael to a bone marrow transplant doctor. “My heart sank. I knew it was bad, but I didn’t know how bad,” said Rachael. It was at this doctor’s office that Rachael was told that she had cancer, that she would have to take a year off of school and would need a marrow transplant.
A year prior to her diagnosis, Rachael’s brother had been the perfect match for a stranger and donated peripheral blood stem cells (PBSC), one of the two methods of donation, to help save her life. Unfortunately when Rachael was told she needed a marrow transplant, her brother was not the best match and she was told she would need to search the Be The Match Registry for her match. This was very hard on her brother, as he desperately wanted to help save the life of his little sister.
The search for a match
Three months into searching the Be The Match Registry, a nearly perfect match was found. Her donor matched 9 of out 10 HLA markers, critical to the success of a marrow transplant. With Rachael’s MDS moving quickly towards leukemia, they needed to act fast. On October 6, 2006, Rachael received her life-saving transplant. After transplant, Rachael spent 6-8 months in and out of the hospital and began to feel better in the spring of 2007. She returned to school in August 2007.
Like some transplant recipients, Rachael experienced graft-versus-host disease (GVHD), a common side effect of marrow transplant. In addition to GVHD, Rachael experienced joint issues, lung issues and has had two hip replacements. This was a very rough period of time for Rachael. She continues to get checkups regularly, but is happy to do so. “In the grand scheme of things, I am happy where I am today,” said Rachael. I’d rather see my doctors more often to know that I am healthy, rather than not knowing if something is wrong.”
The special connection between donor and recipient
The first time Rachael met her donor, Mike, was just over a year after her transplant in New York City for Thanksgiving. Mike then came out to Kansas City to meet Rachael’s entire family and her team of doctors. The special relationship between Rachael and Mike grew over time and they even shared a special dance at Rachael’s wedding.
“My donor gave me my hope and my future,” said Rachael. “Because of him I was able to graduate college, get married, live out my dream job.”
“… my life, my passion, it is the reason I am alive today”
Since her transplant, Rachael has been committed to sharing her story and inspired to grow the Be The Match Registry. For five years before becoming a full-time staff member, Rachael volunteered her time for Be The Match, recruiting nearly 5,500 people to the registry as a Be The Match Ambassador. Today she is a Marrow Donor Recruiter for Be The Match. Today, she brings a photo of herself with her life-saving cells before transplant to each of her marrow registry drives, telling her amazing story and inspiring hundreds more to join the registry.
Today, Rachael is 27 years old and cancer-free. It has been seven years this month since her diagnosis and this coming October it will be seven years since her transplant.
“The Be The Match Registry is my life, my passion, it is the reason I am alive today. My donor, my brother, my best friend and numerous other individuals have gone on to donate to someone in need. I am eternally grateful to my donor, my family and friends, my husband, the team of doctors and nurses who were there by my side each step of the way.”