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  • Jaime Skillen and Esther Zaff

    Stem cell donation was a gift of life

    Stem cell recipient Esther Zaff and donor Jaime Skillen meet for the first timeStem cell recipient Esther Zaff and donor Jaime Skillen meet for the first time

    The first time Esther Zaff and Jaime Skillen met, it was something like a blind date. Each was worried what the other would think, whether they'd click, what they might have in common. When they arrived at the hotel that day, each looked around the lobby and wondered, "Is that her?" "Is that her?"

    In May 2007, Skillen had donated stem cells in the Kraft Family Blood Donor Center at Dana-Farber that helped save the life of Zaff, who suffered from a very rare form of the blood disease aplastic anemia.

    The exchange was anonymous; neither donor nor recipient knew the other's identity.

    Now, a year later, they had agreed to meet for the first time and speak to a room full of family, friends, and total strangers about their experience at a donor recognition luncheon.

    Understandably, their nerves were on edge. And for Zaff, the event was particularly significant: it was one of the few times she had been out in public in a year, after being in isolation to protect her fragile immune system following her stem cell transplant.

    Zaff called it "an Oprah moment," but a more apt description might be the meeting of a lifetime.

    To fully understand and appreciate it, one has to know the events leading up to that day. So let's rewind two years and let them describe it for themselves, along with Zaff's Dana-Farber oncologist, Joseph Antin, MD.

    Jaime Skillen was inspired to join the donor registry by her friend Claire LaChapelle (right), a Dana-Farber patient and stem cell recipient

    May 2005: Skillen, a 26-year-old elementary school teacher from Northbridge, Mass., attends a bone marrow drive for her friend Claire LaChapelle, who is being treated at Dana-Farber for lymphoma. LaChapelle's sister winds up being a match, but Skillen decides to join the bone marrow donor registry in hopes of helping someone else down the road.

    Skillen: The day after Christmas, 2006, I got a call from Dana-Farber and was told I might be a match. I went to my doctor, had blood work done, and found out I was a perfect match for a 54-year-old woman. That's all they told me about her, but since that was my mother's age it had a lot of meaning for me. I went in a month later to donate.

    I was nervous, but it really was a pretty easy procedure. I had shots at home for three days, then went in and spent two days at Dana-Farber. The shots were painful - I was very achy in my lower back - but I kept telling everybody my pain was nothing like what the patient must be going through. She passed away before we had a chance to meet; I was very sad, but my family and friends reminded me she had an extra year to spend with her loved ones that she wouldn't have had otherwise.

    Spring 2007: Zaff, a 35-year-old in Washington, DC, with a husband, 2-year-old daughter, and a job helping non-profit organizations with their fundraising, comes to Dana-Farber to meet with Antin. She has lived for the past 10 years with aplastic anemia complicating a rare, progressive bone marrow failure syndrome called dyskeratosis congenita (DKC), which has recently worsened to the point where she is in dire need of a stem cell transplant.

    Zaff: We immediately fell in love with Dana-Farber and Dr. Antin. I knew other people who had aplastic anemia, but nobody who also had DKC. Dr. Antin had just treated two people with this condition and given them transplants. He was the perfect combination of wise and kind, and my husband Jonathan - who grew up in Newton, Mass. - loved him because he was a Red Sox fan.

    Part of Antin's appeal to Zaff and her family is his ability to explain this complex situation and procedure in clear, understandable language.

    Antin: The stem cell is the grandfather or the progenitor of all blood-forming elements. They reside in the bone marrow and divide, reproduce, and mature on a fantastic level: you produce more than 100 billion blood cells a day.

    The stem cells are the basis for all that. As those cells mature and proliferate in the bone marrow, they are responsible for maintaining your life. Some mature blood cells last for a few hours, some for a few days or months, but all have a limited lifespan.

    You need to constantly replace them, and if you have an injury to the bone marrow or something that causes it to fail and they can't be replaced, your marrow fails.

    Esther's bone marrow - the source of all of our blood cells - had failed, and was unable to produce white blood cells to fight infections, red blood cells to carry oxygen, or platelets to facilitate clotting of the blood. The illness can often be treated with non-transplant therapy, but in other cases the only alternative to cure the disease is to replace the missing or defective stem cells with those of a healthy donor.

    Back in Northbridge, Skillen's phone rings one more time.

    Joseph Antin, MD, with Jaime Skillen and Esther Zaff at the donor recognition eventJoseph Antin, MD, with Jaime Skillen and Esther Zaff at the donor recognition event

    Skillen: I never thought it would happen again. They told me I was a match for a 34-year-old woman. At the time I was 29; she was my boyfriend's exact age, so it hit home. A lot of people asked me why I was going to do it again, and my answer was easy: if it was somebody in my family, I wouldn't want to hear that their reason for not donating was that they had given before. Esther's first donor had fallen through, so I knew she was very sick and there were time constraints. I got the call in April, and a few weeks later in May I went in.

    Once again, Skillen undergoes a series of shots and then returns to Dana-Farber. In the Kraft Center she watches as her blood passes through an IV line and into an apheresis machine, where stem cells are separated out for use by the recipient.

    Skillen: I did it all in one day - they hooked me up from 8 to 5. I didn't even know if it was going to a Dana-Farber patient. I thought it was being shipped out somewhere. It turns out that while I was in one part of the hospital donating, Esther was in another part waiting for my stem cells.

    Zaff: When I went in for my transplant, we told our daughter Gabriella, who was three, "I'm staying with Dr. Antin for three weeks so he can give me special medicine."

    For those going through the transplant process, I hesitate to offer advice because I'm sure everyone's journey is different. For me, the key was committing body and soul to the process, letting each day be what it was going to be, for good or for bad, and having faith in my doctor and his team.

    The transplant nurses were awesome; they give you your dignity while also being excellent at their job. They made it much easier than it otherwise could have been. I laughed every day with my nurse. My husband and I agreed we were going to have a certain sense of humor and we made a promise to ourselves that if we got through this, we were never going to have a bad day again.

    After her transplant and three-week hospital stay, Zaff celebrates her homecoming with husband Jonathan and daughter Gabriella.After her transplant and three-week hospital stay, Zaff celebrates her homecoming with husband Jonathan and daughter Gabriella.

    After three weeks as an inpatient, Zaff goes to live with her husband, daughter, and in-laws in Newton. Because her immune system needs time to recover, she has to remain in isolation for a full year.

    Zaff: I was extremely lucky to have supportive family and friends close by, a benefit that cannot be measured. I was - and am - inordinately lucky to have a husband who took my hands and jumped in with both feet, all the while recognizing that even though the transplant happened to all of us as a family, there was an element of it that I, by definition, had to experience alone and in a different way than those who love me.

    For a year I couldn't be out in public. I could drive in the car with someone, but couldn't even go into my daughter's school to meet her teachers or friends. I was very connected to her at home, but in no way to her life outside the house.

    I'm a very social person, so it was hard to be a loner for a year. My in-laws were amazing, and eventually we found a home of our own near them.

    For one year after her transplant, Zaff and Skillen exchange anonymous letters.

    Skillen: A card came from Esther on Christmas Eve. It read, in part:

    "It goes without saying that we continually feel so grateful to you for giving me a new chance at life. 2008 will be a wonderful year. You are the reason I am here to enjoy it, and there are no words to adequately thank you. Warmly, with much love, your very grateful and getting-better-every-day recipient."

    It meant the world to me to hear from her and know she was doing well. Dana-Farber had been updating me on her condition, but actually hearing from her was extra special.

    This brings us back to the luncheon last June - and the first time donor and recipient meet in person.

    Zaff: Gabriella and I looked at it as a debutante ball - we got all dressed up for it. She was really excited. When I introduced her to Jaime I told her, "This is the lady who gave mommy the special medicine she needed to get well."

    A thank-you hug, one year in the makingA thank-you hug, one year in the making

    Skillen: We were both emotional. We hugged each other, and I think the first thing she said was "Thank you." Seeing Gabriella and Esther's whole family was a great feeling; it was truly wonderful. Gabriella gave me a big hug.

    Skillen and Zaff have stayed in touch by email and phone since their first meeting, and came together again to be interviewed for a story that ran during the 2008 WEEI/NESN Jimmy Fund Radio-Telethon. They plan on dinner soon, but have had a tough time setting a date - both are busy with their healthy, active lives.

    Skillen: I encourage anybody who is not on the national registry to join. It's a life-changing experience; you never know who's out there who needs you. In the end, the biggest reward was in knowing I could help two people during the toughest time of their lives. And yes, I would do it a third time. There is no doubt. Just seeing Esther and her daughter - how could I not?

    Zaff: Dana-Farber is an amazing place, and Dr. Antin is an amazing doctor, but without Jaime I wouldn't be here. You can have the most amazing research and treatment team, but if you don't have the donor you're nowhere.

    She didn't just give me back my life, she gave me back my whole world. Every day I wake up and walk into my daughter's room, I think about Jaime. Every single day. Without her, I'm not here. Because of her, I am.

    Read more stories about the stem cell transplant patient experience

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