When Lily's leukemia relapsed, her parents got some simple advice from an impeccable source — the director of the U.S. National Cancer Institute, Dr. Andrew von Eschenbach. Dr. von Eschenbach's advice? "She needs to see John Wagner in Minnesota."
Lily, the daughter of Jennifer and Jason of Kansas City, Mo., was diagnosed with acute myeloid leukemia (AML) in November 2004, shortly after her first birthday. She received chemotherapy at a local children's hospital in Kansas City but, sadly, her leukemia returned a few months after the end of treatment.
To treat her relapsed leukemia, Lily urgently needed a stem cell transplant. Unfortunately none of Lily's relatives were close matches — not even her brothers, Spencer and Zachary who is her fraternal twin — so they were unable to donate bone marrow. Jennifer quickly turned for help to her close college friend, the daughter of U.S. Congressman Roy Blunt. Rep. Blunt made the connection with Dr. von Eschenbach that sent the Fosters to Minnesota.
Because Lily did not have a relative who could donate bone marrow, and because the wait for an unrelated donor can be long, her best hope was an umbilical cord blood (UCB) transplant. The University of Minnesota is a world leader in UCB transplant research and Dr. John Wagner, the Scientific Director of Clinical Research for the University of Minnesota's Blood and Marrow Transplant Program and Stem Cell Institute, is internationally recognized as a leader in the field. When they arrived in Minnesota, Lily's family found that the treatment plan included a cutting-edge procedure: a double cord blood transplant.
For some time UCB transplantation has been used successfully to treat children with life-threatening hematologic diseases like Lily's. The treatment has been less successful for adults and older adolescents because the number of stem cells contained in one "unit" of cord blood is not sufficient to result in a cure in their larger bodies.
Seeking to extend the benefits of UCB transplant to adults, researchers led by Dr. Wagner tried a bold experiment. To increase the number of stem cells available to transplant, they began using two units of cord blood, from two separate donors. The result was surprising: Their patients ended up with two separate new immune systems and both of them were working to kill cancer cells! It seemed obvious that this "'graft-versus-malignancy' effect times two" could benefit younger children as well. Lily arrived in Minnesota in time to be the second infant to receive a double cord blood transplant. Dr. von Eschenbach had indeed sent the family to the right place.
Double cord blood transplantation in infants is considered an experimental treatment and the family was fortunate that it was covered by their health insurance policy. Jennifer notes that research is critical. "Nothing becomes the standard of care without going through an experimental stage," she says. "It was really exciting to be able to be a part of helping this procedure become the standard of care."