Kathryn Vinson, MS, CCRC
Childhood brings back happy memories, but my preteen years, and ergo the rest of my life, were marked by a profound event. My Aunt Deede, my mom’s youngest sister, was diagnosed with mixed cell non-Hodgkin’s lymphoma in 1992. At that time, standard treatments involved chemotherapy and radiation, and as a last resort, a bone marrow transplant. The FDA approval of the use of monoclonal antibodies for the treatment of this disease in 1997 was a major step forward in immunotherapy, and further targeted treatments have since been developed. However, without these innovations, in the summer of 1993, her disease had progressed to the point that she needed a stem cell transplant.
At the time, our family was told that a full sibling stood roughly a 1 in 4 chance of being a match – good odds with four siblings. This agrees with current data from The Institute for Justice that roughly 30% of patients will find a matching donor in their families. As a comparison, from the national registry, 1 in 430 members will actually be called upon to donate, with the chance of a patient finding a donor varying greatly by ethnicity.
Despite the time since her donation, Mom’s perspective still holds true. I sat down with her to discuss the entire process from her point of view – big sister, donor, wife and mother.
Kathryn: Mom, thanks for talking about this. I know its still an emotional topic all these years later.
Joni: Of course. I’m happy to help.
K: When you found out that you were a perfect match, were you nervous?
J: No, nothing like that. It was strange – I never had any doubt that I would be her donor. Our other siblings matched 5 out of the 7 markers, but I matched 7 of 7. When we were kids, she was more like my little baby doll than a little sister. I loved taking care of her, and this was just an extension of that.
K: Going into the transplant, what were your concerns for your family – Dad, my brother, and myself?
J: Just that it was more time away from you. I had already spent so much time away during her regular treatments. I felt pulled in so many different directions. But, you do what you have to do.
K: What concerns did you have personally – for yourself – going into the transplant?
J: It wasn’t a concern so much for myself, but that something would pop up at the last minute that would prevent me from being her donor. And it almost did. One week prior to the time I was supposed to donate, I found a lump in my breast. While most doctors would perhaps do a needle biopsy, or take a wait and see stance, we couldn’t take that chance. So, I underwent a lumpectomy, on an almost emergency basis. Thank God it was benign, and I was able to go forward with the transplant.
K: How did the transplant affect your family – that of your mom, brothers and sisters?
J: It was really a rallying point for us. We were, and still are, such a close family.
K: Describe your emotions when you found out that the transplant was successful, that she was producing blood cells again?
J: It happened so quickly, it was truly amazing. The day after Deede received my bone marrow, the transplant surgeon came in her room and said, “The cavalry is here.” I’ll never forget those words. The bone marrow had already started to produce healthy cells. I never had any doubt that it would work. With intense faith, I prayed to God, and put it in His hands.
K: Did you suffer any complications from the transplant? Did she?
J: For me, not really. But Deede became type specific to my platelets. Her body literally craved my platelets. I was donating so often that I became depleted they couldn’t take anymore from me. This taught me about the critical need for platelets and I then became a regular platelet donor. Years later, following a platelet donation, I found out that a young girl battling leukemia had come to specifically need my platelets. It’s an honor to be able to help save a life.
K: Despite the success of the transplant, Aunt Deede’s body suffered from the treatments and she eventually lost the battle. Despite rationality – did you feel responsible in any way?
J: Not at all. I knew in my heart that I had done everything that I could do. At that point, the course of her disease was in the hands of God and the doctors. Of course, I think of all the progress that has been made since Deede got sick, and how her prognosis would have changed if her illness had come just five years later.
K: What advice would you give to someone that is going to be a donor?
J: Just do it. Don’t hesitate. There is no greater feeling than knowing that you could save a life.
K: Thanks again Momma.
For those of you that are preparing to donate life saving stem cells to a loved one or a stranger, all of us at Cancer Horizons thank you from the bottom of our hearts. It is truly the greatest gift. If you are interested in joining the National Registry, please click here for more information.