The ultrasound and blood work pointed strongly toward a devastating diagnosis: leukemia. The next day, Alex was traveling by ambulance to DMC Children’s Hospital of Michigan.
The stunned parents found the doctors at DMC Children’s deeply caring, especially juvenile leukemia specialists Dr. Ronald Chu. Alex’s form of leukemia was very rare. Called Juvenile Meyelomonocytic Leukemia, or JMML, it occurs in only about one percent of childhood leukemia. This strain was also known for not responding well to standard kinds of therapy. The only treatment for JMML is a bone marrow transplant, and that has only a 50 percent success rate.
A bone marrow transplant promised to fight Alex’s condition because the leukemia cells were coming from his bone marrow. With chemotherapy, the bone marrow transplant should help remove those cells.
Finding a donor match for Alex proved difficult, but it came in the form of umbilical cord blood. “There are a lot of bone marrow stem cells in the umbilical cord blood,” Says Dr. Chu. “Therefore, it is a source for these transplants and it’s very effective in children.”
A chief concern in stem cell transplants is always Graft vs. Host disease – the body’s rejection of the new cells. Graft vs. Host Disease struck Alex particularly hard, and he was extremely sick. He was vomiting, fevered, lethargic, and even suffered hair loss. He required blood transfusions and platelet transfusions, as well as IV nutrition. His bloodstream became infected. Alex’s survival rate was estimated at around 10 percent.
Dr. Chu and his colleagues decided to try one last medication, an antibody that actually blocks the immune system. Within days, Alex’s condition stabilized, and slowly, began to improve. Within three weeks, he was going home.
After months of severe illness, Alex spent his first Christmas with his parents at home. He was still weak, and the future would be filled with painful rehabilitation. “The physical therapists were incredible,” says his mother. “They said ‘We are confident Alex will get better, but it is going to take a lot of work.’”
By the next Christmas, two-year-old Alex was walking on his own. When he turned five in the fall of 2010, he started school. Dr. Chu says there is no sign of his leukemia. “His course has been truly remarkable. I’m very positive that he should be able to come off his medications.”