Charlie's Story

Baby Brother's Umbilical Cord Blood Leads to Survival Success

Childhood leukemia, once a virtual death sentence, is now a survivable disease for most children. Today, approximately 85 percent of children diagnosed with acute lymphoblastic leukemia (ALL--the most common type) are cured. Not all children are cured by standard treatment protocols, however, and researchers are working tirelessly to find ways of successfully treating kids for whom existing treatments fail.

For Charlie, standard treatments were not enough. Charlie, 15, was diagnosed with ALL in 1994, when he was 4 years old. He enrolled in a 38-month chemotherapy protocol at Robert Wood Johnson University Hospital in New Brunswick, N.J. In June 1996, after 20 months of treatment, Charlie's doctors found that the leukemia had returned in his central nervous system. They placed him on another protocol but, despite their best efforts, he relapsed again. It was clear that Charlie would need something special to be cured. Fortunately, his parents, his baby brother, and a new breakthrough in childhood cancer research were able to provide that something special--an umbilical cord blood stem cell transplant.

Since the 1970s, doctors have known that cord blood (blood left over in the umbilical cord and placenta after a baby is born) contains the same type of stem cells as bone marrow. These cells are capable of developing into all types of blood cells. The first successful bone marrow transplant had been performed at the University of Minnesota in 1968. Twenty years later, French researchers performed the world's first umbilical cord blood transplant. Dr. John Wagner performed the first cord blood transplant to treat a child with leukemia in 1990. In 1991, he joined the faculty at the University of Minnesota, an internationally prominent stem cell transplant research center.

While attending a parents' cancer support group, Charlie's mom and dad, learned about the promise of cord blood transplantation. When Charlie's mom became pregnant with their third son, they decided to store his cord blood even though they didn't really expect to need it. Charlie's baby brother, Gregory, was six months old when Charlie relapsed for the second time. His cord blood was a six antigen match--the best possible--to Charlie's cells. He didn't know it but he had already made a big contribution to Charlie's future.

After his second relapse, Charlie's oncologists referred the family to the University of Minnesota for transplant. The family spent a grueling three and a half months in Minnesota, from early November 1997 to mid-February 1998. Several of their relatives also made the trip to Minnesota, staying for two-week shifts to help them care for Charlie's little brothers Michael and Gregory.

Charlie underwent an intensive regimen, including high-dose chemotherapy and total body irradiation as well as cranial radiation and a testicular "boost." The purpose of this pre-transplant regimen is to "empty" the bone marrow so that the transplanted stem cells can re-supply it with healthy new cells. Dr. Wagner performed Charlie's transplant on the day after Thanksgiving. Compared to the pre-transplant ordeal, the actual transplant was simple, similar to an ordinary blood transfusion.

Of their time at the University of Minnesota Chris says, "I thought we were in excellent hands. We saw a lot of kids with worse conditions, so we realized we were actually pretty lucky. We received excellent care." Charlie has both painful and happy memories of his hospital stay. While his immune system was suppressed, he developed a case of shingles, a viral disease that caused painful sores to break out on his scalp. He also remembers disliking the liquid medicine he had to swish in his mouth to combat the mouth sores that can be a side effect of the transplant regimen.

Positive memories include playing games on the computer in his room. The computer became vital to the whole family, allowing them to stay in email contact with friends and family back home. Charlie also happily remembers Christmas when he and his family decorated his room by stringing holiday lights and painting the windows.

Today, Charlie is a healthy high school student. He performs well in school and works a part-time job to help finance his interest in splatball, which his mom says can be quite expensive. Charlie also studies karate and is active in drama at school. He loves to draw and has not lost his interest in computers. He expects to find his future in some area of design, perhaps creating video games or designing houses as an architect. He has a bright future to look forward to thanks to the amazing progress that has been made in the world of childhood cancer.