Story and Photos by Christopher Klose
Madelen Hernandez-Garcia is four years old. Her smile is irresistible. She loves Doritos, strawberry yogurt, and all things pink. And she misses her 7-year old brother Hendrid, back home in Guatemala.
Since last December, she's been treated for Acute Lymphoblastic Leukemia (ALL) at the NIH Clinical Center. ALL is a cancer of the white blood cells, which fight infection. It is the most common cancer in children, representing 23 percent of all cancers among those 15 or younger.
Forty years ago, ALL was incurable. Today, in the United States, its cure rate is a major success story—as many as 90 percent of the kids who have it are cured. But worldwide, ALL remains the leading cancer-killer of children.
"Madelen has the riskiest type of ALL. She needed more aggressive therapy than she could get at home," explains her doctor, Alan S. Wayne, M.D. He heads the Hematologic Diseases Section of the Pediatric Oncology Branch of the National Cancer Institute (NCI).
In January, Dr. Wayne transplanted bone marrow donated by Hendrid into Madelen, after chemotherapy. Her parents, father José and mother Julia, say, "Nobody wants to be in this situation. She's suffered a lot but everything's going well."
But Dr. Wayne calls transplants a blunt, toxic tool for fragile young children. "They represent a cutting edge treatment for high-risk leukemias, like Madelen's. But developments have not been fast enough to rescue all the kids who need it. They are not available in most of the world and, for people without medical insurance, are too expensive."
Son of a Cincinnati doctor, Dr. Wayne "inherited the family business"—"a passion for people and medicine." His ultimate goal: "To develop a targeted, less damaging therapy that harnesses the immune system of healthy siblings." In lay terms? To make transplants safer and more successful through tumor vaccines.
Madelen's Song of Help
Madelen makes friends easily, even with the shyest kids. They love to play together at The Children's Inn at NIH, where they stay when being treated.
Often the kids are in pain. Madelen made up a little song to help.
"Kids should sing this song when they're sick," she whispers softly…
"God is with me.
If your eyes hurt, or your feet hurt,
God is with you."