Student writes about her bone marrow transplant, earns top media reward
Friday, November 21, 2008
Rachael, 22, a senior in the School of Family Studies and Human Services, received a bone marrow transplant on Oct. 6, 2006. Rules kept her and her donor from meeting: no personal contact, not even an exchange of names, for one year.
Last November, Rachael, her parents Llinos and Bruce Leisy of Leawood, Ks., and her brother Matthew traveled to Connecticut to meet the man whose bone marrow kept a rare form of blood cancer from taking Rachael's life.
For a year, the two had been nameless pen pals; letters were funneled through the donor program that maintains a list of possible donors and facilitates matches. Rachael signed her letters from "Your other half."
Mike Carneiro was waiting at the train station. Rachael recognized him immediately and flew into his arms. "It was one of those moments when the world stopped," Rachael recalled.
This month she stood before the National Marrow Donor Program (NMDP) Council convention in Minneapolis and accepted the Excellence in National Media Award with Susan Sulich, who wrote about Rachael's experience in the Sept. 16 issue of Woman's Day magazine.
At the convention, she met Carneiro's nurses who did the blood cell harvest in Boston, the search coordinator from NMDP who "found" Carneiro and others in "Team Rachael."
In August 2006, Rachael was starting her sophomore year at K-State when her mother called and told her to come home immediately. The results of blood tests were in. She left, telling friends "I'll see you tomorrow," and didn't return for a year.
Rachael was diagnosed with Myelodysplastic Syndrome (MDS), a rare blood disorder in which the bone marrow doesn't produce enough normal blood cells. It appeared to be developing into a deadly type of leukemia.
Because of her susceptibility to infections, she moved into a germ-free hospital room as doctors searched for a donor whose bone marrow stem cells could replace Rachael's.
Isolation, before and immediately following the transplant, was difficult. No hugs from her family or boyfriend. Rachael had to wear a surgical mask. A sterile environment in the hospital and at home lowered the risk of infection because Rachael did not have white blood cells to do battle.
"It makes me more grateful for little things like going to the grocery store," she said. "My faith helped me cope with fear and the unknown. So did my community of family and friends."
Doctors try to match 10 proteins found on cells. Siblings are often good matches but Matthew was not. Out of 11 million registered donors worldwide, NMDP found four possibilities. The first to respond was Carneiro. He had signed up on the donor registry nine years ago when his son, now 13 and cancer free, was diagnosed with leukemia.
Carneiro was a 9 out of 10 match. Ten out of 10 is ideal.
"After a lot of praying and consultations with my doctors at St. Luke's, we decided to go with the 9 out of 10 match. Everyone was worried, but I was relatively confident because I knew he had his heart in it," Rachael wrote in the Woman's Day story.
The search took three months. On Oct. 6, 2006, Rachael watched Carneiro's healthy stem cells flow into her veins.
Rachael is back in the K-State classroom. "It's a long journey to recovery," she said. She tires easily; her hip needs replacing because of damage caused by high steroid dosages commonly given to marrow recipients to help the body accept foreign cells. Her cells and Carneiro's are still learning to live together.
Last Thanksgiving, Rachael and Mike Carneiro celebrated the first anniversary of the gift of life and this Thanksgiving Team Rachael celebrates her second year of being cancer free.
Rachael is one of about 4,000 who have bone marrow transplants every year in the United States. She has become an expert in the transplant process, and in the workings of her own body. "I'm really in tune with how I feel," she said, an understanding important to her continued recovery.
She remains smiling, positive and thankful to Team Rachael, and especially Carneiro who "gave me light during the darkness," and her parents who "stayed strong and positive for me."
Her foundation is Team Rachael "Thankful for Life," operated through the Greater Kansas City Community Foundation, 1055 Broadway, Suite 130, Kansas City, MO 64105. Her goal is to promote awareness and to recruit potential donors to the registry to save lives. She has sponsored three bone marrow registry drives at K-State and she plans a formal donor drive this spring.
Read the full story (Adobe acrobat) from Woman's Day.