The faces of leukemia

March 09, 2001

The faces of leukemia


Leukemia has many faces, says Heather Cederholm, physician's assistant at Johns Hopkins Pediatric Oncology Center in Baltimore.


Six-year-old Kacie Fath of Boonsboro and 4-year-old Ethan Morningstar of Williamsport are two of those faces.

A cancer of the white blood cells, leukemia is a complex disease. It is the most common form of cancer in childhood, affecting approximately 2,600 children younger than 15 in the United States each year, according to "Cancer Facts & Figures 2000," an American Cancer Society publication.

The cause of most leukemia is not known. After telling parents that their child has leukemia, Dr. Kaveri Suryanarayan tells them "It's not anybody's fault."


These are innocent little children, says Donna Fath, Kacie's mother. "We questioned why," she says.

Suryanarayan, assistant professor of pediatrics, is a member of Ethan's team at the Pediatric Hematology/Oncology Division at University of Maryland Medical Center in Baltimore. Cederholm is the "link" for Kacie and her medical team at Hopkins. She acknowledges the difficulties of working with sick children: "It's tough, but it's very rewarding."

Ethan was diagnosed last spring with acute myeloblastic leukemia. He had chemotherapy from May through November.

He was in remission, but on Jan. 15, tests discovered that the leukemia relapsed. He's back in the hospital in Baltimore because he had a fever, a sign of an infection. Shauna Morningstar, Ethan's mom, is with him. She expects they'll be there for a few more weeks.

Then they'll go to the Fred Hutchinson Cancer Research Center in Seattle for a bone marrow transplant, where a donor was found for Ethan - one of 19 perfect matches in the United States.

"We're really lucky," Morningstar says. She expects that she and her son will be in Seattle for six months to a year. She's traveling out soon for consultation, a tour of the center and to look for an apartment which she anticipates will cost as much as $1,800 a month. Her insurance will not cover donor's expenses, estimated as more than $20,000.

Morningstar and her son cope by looking at the positive things in their lives. Ethan has no bad associations with the hospital in Baltimore. "Chemo's not a bad word," Morningstar says.

"You just do it," says Donna Fath.

Kacie's T-cell acute lymphocytic leukemia was diagnosed last October. "It's hard. It's expensive. But you do what you have to do," she says.

Kacie started chemotherapy the day after she was diagnosed at Hopkins. "Time is important," Cederholm says. Kacie had surgery to put a "port" in her chest - an access point for her medications.

The first phase of her treatment, induction, is the most difficult. It is an intense regimen of high doses of medicines. The consolidation phase - where Kacie is now - lasts for five to six months, with treatment every three weeks. Then she'll move into about a year-and-a-half of maintenance with oral medication, Cederholm says.

Among the side effects Kacie has experienced are painful blisters in her mouth. Her weight, which dropped from 51 to 33 pounds, is back up to 43 pounds. She misses playing soccer, her mom says.

Fath has had to take unpaid leave from her part-time job at M&T Bank in Boonsboro. She and her husband, Randy, have two other children - Jessie, 13, and Tyler, 11 - who are "shuffled" among family and friends when their parents are in Baltimore with Kacie.

"They are doing a wonderful job," Cederholm says of Kacie's family. They make a game of having her clear the chemotherapy medicine from her body, she adds. She calls Kacie a "champ."

Suryanarayan says Ethan and his family are handling his illness "incredibly well." It's not a situation that anyone would choose, she says. But people rise to the occasion, she says.

Sixty years ago, there was no treatment for leukemia that worked, she says. She admires people who participate in clinical trials of medications and treatments.

"There are a lot of good hearts out there," Morningstar says.

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