Stem cell donor and recipient share a special bond
It was nearly 10 p.m. on a Friday, and Bob Mancini knew he had no business being out so late. Weakened from chronic graft-versus-host disease (GVHD), a complication from his blood stem cell transplant, he leaned on a railing for support, his eyes fixed on the doors of the international flight arrival area at Boston's Logan Airport.
The plane had originally been expected to land that afternoon, and now it was taking more than an hour for his guests to get through customs. Still Mancini waited, a smile on his face.
"When you're meeting the person who saved your life," the 65-year-old Dana-Farber patient said with a laugh, "what's another hour?"
A few minutes later, Mancini was embracing a young woman he had never met as if she was one of his three daughters. In a way, she was kin.
Blood stem cells Annette Mueller donated in her native Germany had been transfused into Mancini's body during a transplant to cure his case of advanced myelodysplasic syndrome (MDS), a pre-leukemic condition characterized by damaged blood-forming cells in an individual's bone marrow.
"It was wonderful to be able to help someone, and it was so easy," Mueller said, after traveling with her husband, Michael, and 5-year-old son, Finn, to stay with Mancini and his wife, Laura, at their home outside Boston. "All I had to do is lay down for four hours like I was donating blood. Now I have a new family."
Mueller never considered this result when she joined Germany's stem cell donor registry in 2004 at a benefit for a neighbor with leukemia.
Signing up usually requires only a cheek swab, from which tissue is "typed" to determine its protein (antigen) make-up and added into an international computer registry of potential donors.
The commitment, however, is a serious one: when called upon, registrants like Mueller are expected to follow through and make a donation.
Across the ocean, in December 2005, Mancini was getting prepped for vision correction surgery when doctors noticed his blood counts were low. He had a bone marrow biopsy on Christmas Eve, and on New Year's Eve was diagnosed with MDS.
Coming to Dana-Farber, he underwent several months of weekly transfusions. His oncologist, Vincent Ho, MD, determined he needed a stem cell transplant.
Only 30 percent of all potential stem-cell transplant patients have family members whose antigen type matches their own. Mancini was not in this group, so his care team turned to national and international donor registries. Out of a network of some seven million potential donors, they found a perfect antigen match in Mueller.
Mancini's MDS has since disappeared, but the GVHD lingers. The disease occurs when white blood cells from the donor identify cells in the recipient's body as foreign and attack them; while controlled by medication, the disease has sapped much of Mancini's strength and is a constant threat to his skin, liver, and intestines.
Still, his growing relationship with Mueller has boosted Mancini's spirits.
Each donor registry sets its own restrictions about when and if patients and donors can communicate, both to protect against undue pressure on a donor to donate or make subsequent donations, and to maintain the patient's confidential health information.
For two years, Mancini and Mueller could only communicate anonymously by letters that were reviewed by staff from Germany's donor network, but when the restriction was lifted they began emailing photos and preparing to meet.
"There hasn't been one time during the last four years where I've had a good cry about everything, either by myself or with Laura," says Mancini, who also invited Ho and his Dana-Farber nurse practitioner Amy Joyce, MSN, ANP, over for dinner during the Muellers' visit.
"But when I try to describe what Annette means to me, I can't complete a sentence without breaking down. 'Love thy neighbor' - that's what it's all about."