Hope Against Fear (page 2 of 3)

The Price They'll Pay for Treatment

George had no complaints with Stanford, but a whole year of chemo seemed grueling for his sports-loving son, a kid who just wanted to play ball and swim. So George, a pilot for Northwest Airlines, started researching treatment programs, including the one at St. Jude, which he'd learned about from television.

He soon discovered that St. Jude was different from other cancer centers. There, the length of chemotherapy treatment is cut in half, yet the survival rate for medulloblastoma remains high: a 70 to 85 percent chance of survival over five years.

Cariann VanderWesten, seven, sits in a waiting-room chair next to her mom and dad, Matoka and Bill, clutching a baby doll and fiddling with a clear patch on her right arm. Hidden underneath her white T-shirt is a line taped to her chest, where chemo drugs are fed into a central vein. Her head is covered with a crocheted cap. She wears a face mask neatly fastened with a pink band. Cariann is waiting to get a shot that will boost her bone marrow production and stimulate her white blood cells, since they take a wallop after each chemo treatment.

She was diagnosed with a potentially aggressive brain tumor called choroid plexus carcinoma, one that affects less than five percent of young patients. After a surgeon removed the tumor, Cariann's parents were told their daughter had six to nine months to live. "I just wouldn't accept that, and I told him no," Matoka VanderWesten says. "I said, 'She will be fine, you will see. I will walk her back into your office.'" Matoka heard of St. Jude from family road trips growing up and knew this was where she wanted her daughter to be treated. Not only did it turn out that the doctor was wrong about the type of cancer the seven-year-old had, but her chances of survival are actually 65 percent over five years.

What's less clear for kids as young as Cariann is the price they'll pay for the treatment they receive. Children under eight have the highest risk for severe intellectual deficit from radiation, especially when the tumor has spread and the entire brain must be treated. That's why Amar Gajjar, MD, director of the neuro-oncology division and physician to both Paul and Cariann, is as focused on reducing his patients' side effects as he is on boosting cure rates. Radiation and chemo can carry a devastating host of side effects: cognitive changes, hearing problems, leg or arm weakness, even blindness and the inability to conceive children.

"In the emotional heat of the moment, parents say they'll accept their child whatever the result," Dr. Gajjar says. "But we've had some children who survived and had radiation at a very young age, and they've gone to statuses close to that of mental retardation." One of the ways he and the brain tumor program at St. Jude are protecting kids is by analyzing all the tumors of patients treated on a genetic level. Think of cancer cells as corrupted computer chips. The cause of the corruption in one child's cells might be different from that of another child with the same type of tumor. Understanding what makes each tumor tick helps doctors develop new and effective treatments with fewer side effects.

Luckily, Dr. Gajjar determined that Cariann, who gets A's and B's in school back home in Morganton, North Carolina, only required focal, or targeted, radiation to her tumor. Otherwise, she probably would have struggled to graduate from high school. The treatment has compromised her memory -- she forgets things she learned in school and all the Winnie the Pooh characters -- but once reminded, she's able to hold on to them again. "Right now, she seems like the same child she was," Matoka says. "But I do worry about how this will affect her down the road."

Aside from some leg and stomach pain and a few sad moments from missing her brothers back home, Cariann has a smile on her face most of the time. At night, before she crawls into bed at Target House, one of the free housing facilities on the hospital campus, she grabs her mom's hand, closes her eyes and prays: "Now I lay me down to sleep ... Please bless Mommy, Daddy, my brothers ... Thank you for healing me, and please let me be cancer free forever."

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• The St. Jude Story
• First, a devastating diagnosis. Then, the hurricane. How three families rode out the storms.
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• Finding Hope at St. Jude Children's Research Hospital
• At St. Jude Hospital, a remarkable medical team gives sick children all they ever wanted, a chance at a future.
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• How you can help support the patients at St. Jude Children's Research Hospital.
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• Resources for Parents of Kids With Disabilities
• Helpful links to the best sites on the Web for parents of kids with disabilities.
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