"We were vacationing in Montana in the summer of 1995," Kristin Lengowski, a physician and mother of four, said, "when my oldest son Robert said: 'Mom, my jaw hurts.' Right away we feared his cancer had returned."
Then nine years old, Robert Lopez-Lengowski had already been through a lot. Only a year before, at the end of his first basketball season, this vibrant, talkative boy had been diagnosed with leukemia – acute myelogenous leukemia (AML), to be exact. Within months after his diagnosis, Robert received extensive chemotherapy and an autologous bone marrow transplant (a transplant of his own stem cells, purged of cancer cells) – at that time, the best choice for patients who had no matching related donors and had no time to wait even as little as six months to find an unrelated donor through marrow donor registries. Now here he was, passing through the buttes of Montana, and his jaw hurt.
After consulting with Dr. Will London, Robert's pediatrician back home in North Carolina, Dr. Lengowski and her husband, Dr. Marcelo Lopez-Claros, checked Robert into Duke University Medical Center. That same night, Robert's oncologist, Dr. Joanne Kurtzberg, offered the family three choices: do nothing, wait for a marrow transplant from the NMDP, or try what was then a new procedure, a transplant of cord blood from an unrelated donor.
"It took us three minutes to decide," Dr. Lengowski said. "Even if Robert survived the wait for a marrow donor, his cancer would become more resistant to chemotherapy." There was no doubt in his parents' minds: Robert would have a transplant immediately, using cord blood collected, tested, typed and stored by the New York Blood Center. When Dr. Kurtzberg submitted her request to NYBC's National Cord Blood Program. Dr. Pablo Rubinstein's staff located two units that were suitable matches for Robert's tissue type, one that matched very closely and another that matched not quite as well. Whichever unit the family and their physician decided to use, it could be available within days rather than months, one of the advantages of banked cord blood. That the units were readily available was important for Robert, given that he'd already had one marrow transplant and his chances for survival were slim.
That the unit did not have to be perfectly matched turned out to be just as important because the best matched unit was not necessarily the best one for this young man. When NYBC's Susan Mintzer, R.N., took the family medical history from the cord blood donor's mother, she found that some family members had a mild inherited blood disorder, spherocytosis. Examination of red blood cells from the cord blood suggested that the cord blood donor had the disease as well. Though the health risk posed was relatively minor, the physicians chose – with the family's consent – the other unit. "In just a few months he was out playing soccer, bald and skinny as could be, but he didn't care. He was so determined to get his life back" Dr. Lengowski said. Robert's mother is certain that "research saved my son's life."