Optimism Tinged With a Dose of Reality

By John Kelly
Wednesday, December 13, 2006

Children's Hospital treats about 10 percent of all childhood brain tumor cases in the country. That's a reassuring statistic for parents seeking help with this most insidious of cancers. My assistant, Julia Feldmeier, met a local couple whose son is being treated for a rare and deadly tumor.

The tumor occupied almost half of the right side of Micah Davis' s brain. The size of his father's fist, it pushed against his cranium, weakened the motor skills on his left side and made him irritable and withdrawn.

Then only 18 months old, he was too young to communicate this, except to paw at his skull and say, "Head, head, head."

His mom, Kriscinda, 26, and his dad, Luke, 28, took note of the symptoms but -- like all parents confident in their child's well-being -- didn't connect the dots. After all, Micah appeared to be developing normally. They attributed his vomiting to acid reflux and assumed his mood change was simply a phase. His head-grabbing, they thought, was a gesture of self-discovery.

Kriscinda's father has a brain tumor. She worried this might be the case with her son but dismissed the idea as paranoid. Luke wouldn't hear of it. "It was the last thing I wanted to think about," he says. "I remember saying, 'No, you can't think like that.' "

The Gaithersburg parents are still thinking positively, but the stakes have changed. Micah's tumor is what is known as an atypical teratoid/rhabdoid tumor, or ATRT. It's among the deadliest of child tumors.

"It's resistant to therapy and spreads rapidly," says Dr. Roger Packer, chief of neurology at Children's Hospital. There are only about 200 documented cases of ATRT, and Children's treats two to five cases a year.

An eight-hour operation, led by Dr. Amanda Yaun, a neurosurgeon, successfully removed 70 percent of Micah's tumor -- the remainder was deep in the brain, attached to critical areas. In the ensuing weeks, Dr. Brian Rood, a doctor in Children's hematology and oncology division, delivered high-dose chemotherapy that reduced the tumor by an additional 10 percent. Dr. Yaun went in for a second surgery, removing another 10 percent, most of it dead tumor tissue, a sign of the chemo's effectiveness.

Kriscinda and Luke opted not to pursue radiation as a means of therapy for Micah -- for children younger than 3, radiation often results in brain damage without increasing the likelihood of survival. So now, one year after his diagnosis, he drinks two "chemo cocktails" daily -- low-dose oral chemotherapy mixed with chocolate milk.

Micah gets an MRI every three months, and he appears to be doing well. He is happy again, "a ball of 2-year-old energy," says Kriscinda. But there are no promises: Most children younger than 3 with an ATRT have a chance of survival of less than 10 percent. Of the children treated at Children's, most live a year before the tumor kicks in again. If Micah's returns, he won't be able to undergo high-dose chemotherapy again. Doing so would destroy his bone marrow.

So while the Davises try to be optimistic -- Micah's tumor seem to be in remission, and the doctors at Children's are researching potential new therapies -- they also try not to think beyond what's in front of them.

Says Kriscinda: "I think we were dreamers before. . . . Now we're much more purposeful."

Helping Children's

The same sense of purpose pervades the wards and treatment rooms at Children's Hospital. The nurses and doctors there don't shrink in the face of tough odds such as Micah's. They'll do all they can to save his life.

You would pray for the same for your child, especially if you were poor and without insurance. Each year, readers of The Washington Post help make such care available.

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