'You can't do it alone'
About AML
# AML, or acute myeloid leukemia, also is known as acute myelogenous leukemia, acute myeloblastic leukemia or acute nonlymphocytic leukemia.
# AML occurs in people of all ages, but is most common in older adults. More than 10,000 new cases are diagnosed in the United States each year.
# The disease is not inherited or contagious. Some cases my be linked to environmental factors, such as exposure to benzene in the workplace.
# Patients with AML have a defect in the immature cells of the bone marrow that affects the body's production of healthy red blood cells, platelets and white blood cells.
# Patients with too few healthy red blood cells (anemia) may look pale and feel tired and short of breath. A shortage of blood-clotting platelets may lead to bleeding or bruising easily; injuries may heal slowly or not at all. A low white-cell count may lead to frequent infections (ie., sore throats), fever or pain in the bones and joints.
# Some people with AML do not notice any symptoms; their illness may be found during a blood test.
Philip G. Pavely/Tribune-Review
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By Caroline Shannon
TRIBUNE-REVIEW
Monday, July 25, 2005
Sherry Kozlowski has decorated her son Michael's room with his favorite things, including a T-shirt that says "I have CHEMO BRAIN, what's your excuse?" and a pillowcase from home that covers his hospital pillow.
Michael's dad, Kevin Kozlowski, often sits by his hospital bed and plays the guitar, and Michael's 6-year-old brother, Steven, watches videos and plays games at a corner table.
The whole family from the Haler Heights section of McKeesport is there to support 12-year-old Michael Kozlowski, a patient at Children's Hospital of Pittsburgh. He's being treated for acute myeloid leukemia, or AML, a type of leukemia that typically occurs in adults.
Leukemias are cancers of the white blood cells or their precursor cells, which develop from stem cells in bone marrow. Multiplying rapidly, leukemia cells accumulate in the marrow, hindering the production of normal blood cells. They also may travel through the bloodstream and accumulate in other parts of the body, where they continue to multiply.
"There are only about 500 cases (of childhood AML) each year," Sherry Kozlowski wrote in her online journal dedicated to her son. "It is very curable."
The National Institutes of Health reports that "complete remission occurs in 70 percent to 80 percent of patients."
Dr. Jean Tersak, a specialist who is treating Michael, said AML accounts for only 20 percent of childhood leukemias. The majority of children with leukemia, 70 percent, are diagnosed with acute lymphocytic leukemia, or ALL, which has similar symptoms.
"All childhood cancers are rare relative to adult cancers," Tersak said, explaining that the incidence of AML rises significantly among people older than 55. It is the most common form of leukemia in adults.
Symptoms of AML include shortness of breath; fever, bone and joint pain; paleness; abdominal pain; and bruising. But when Michael's illness began, even his doctors weren't sure what was wrong.
Sherry Kozlowski took her son to the doctor's office in late January because he had a high temperature and nausea. He was diagnosed with the flu. The rest of the family also got sick, but they recovered.
Michael continued to run a fever, his mother said.
She called the doctor when his temperature reached 103 degrees, but was told that a fever alone wasn't dangerous. Michael tried to return to school, but by the following Monday he was back at the doctor's office, complaining of severe back pain.
Again a physician dismissed the symptoms, suggesting the boy had strained a muscle carrying his backpack.
Michael's mother was not convinced.
"The fever was the big clue to me, since he was never a child to have a high temperature," Sherry Kozlowski said.
Later that week she called the doctor's office again and insisted on seeing Dr. Annette Ndagano, the family's pediatrician. When a strep test came back negative, Ndagano told the family to take Michael to the emergency room.
"She knew something was wrong," his mother said.
On Feb. 3 Michael went to the emergency room at Children's Hospital of Pittsburgh for a physical, chest X-ray and blood tests. Because the blood work appeared to have some discrepancies, he was admitted for further testing.
"For some odd reason that I cannot explain, I asked, 'You're not talking about something like leukemia, are you?'" Sherry Kozlowski recalled. "They said that would be the worst end of the spectrum."
A bone marrow aspiration and biopsy helped doctors identify Michael's illness. The next day, they told the Kozlowskis that their son had AML, "a very aggressive leukemia."
"I had to have my sister leave the room with me at one point. ... I just lost it," Sherry Kozlowski said.
Michael was transferred to the oncology unit at Children's on Feb. 7 and immediately started his first round of chemotherapy.
Bone marrow transplantation in conjunction with chemotherapy was a treatment option for Michael, but it requires finding a donor with a similar cellular makeup.
A brother or sister is a prime candidate to donate bone marrow, Tersak said, because siblings share a genetic background. But Steven was not a match -- and neither were Michael's parents.
So Michael was enrolled in a trial chemotherapy regimen involving a new drug, Mylotarg. Dr. Steven Ambrusko, another of Michael's physicians, said he receives the same chemotherapy as every other child with AML, except that Mylotarg is added to the treatment.
Michael is one of three Children's Hospital patients being given the drug.
So far, he's been through four grueling rounds of chemotherapy.
During the third round Michael contracted alpha hemolytic strep, meningitis and septic shock, all bacterial infections.
"Shock is simply an inability of your body to maintain body mechanisms with adequate blood flow," Ambrusko explained. Septic shock may cause low blood pressure, leading to the malfunction or failure of vital organs, such as the brain, heart, kidneys or liver.
Michael was placed in the intensive care unit and his family was told to call a priest. But he pulled through and left the ICU almost two weeks later. He expects to complete his last round of chemo this summer.
"He is an inspiration," Tersak said.
Michael admits he doesn't like taking medicine and "not being able to go outside," but he has enjoyed getting to know other children who share his diagnosis.
"The one I am best friends with is Matt," he said. "When we do get together, we usually play cards or walk the halls" of the hospital.
Michael also is painting a ceiling tile in Austin's Playroom, a room at Children's funded through the efforts of hockey great by Mario Lemieux and his wife, Nathalie, and named for their son. Michael's tile depicts a saxophone -- the instrument he plays in his school band -- along with musical notes and paw prints representing the Wildcats, his school's team.
Michael's doctors have helped to make the situation "more comfortable," Sherry Kozlowski said, by answering questions and guiding her family through some difficult times.
"We love our doctors," she said. "They are each special in their own way."
Also caring for Michael are "child life specialists" at Children's who encourage him to participate in activities.
"We call them our cruise directors," Sherry Kozlowski said. Not only do they keep Michael busy while he's hospitalized, but they also entertain him during painful procedures such as a bone marrow aspiration, where marrow from the pelvic, breast or hip bone is withdrawn through a hollow needle for testing.
The support of friends and family members has helped Michael the most, his mother said.
"People have just been wonderful," said Sherry Kozlowski, who wears a pin that says "My son is my hero."
Her friend Cindy Van, of San Diego, started a campaign to have Michael receive postcards from from fans of the rock band Aerosmith in all 50 states.
Van and her two daughters also asked Hard Rock Cafe restaurants around the world to send T-shirts to Michael. He has received more than 30 so far, including shirts from Las Vegas and Myrtle Beach, Italy and Kuwait.
"Mike wants to someday visit all of the Hard Rocks," Sherry Kozlowski said.
A jersey autographed by Lemieux and a harmonica signed by Aerosmith's lead vocalist, Steven Tyler, also have lifted the boy's spirits."He wanted to play (the harmonica), but I said, 'You'll wear all the marker off,'" Kevin Kozlowski said, laughing.
Students at Michael's school, St. Joseph Regional Catholic School in Port Vue, have made him cards for every holiday, he added. "Every day I dropped Steven off, it took me 20 minutes to get out of school."
The family's gifts have been more personal. Before Michael lost all his hair, for example, his grandfather helped him shave it into a mohawk.
"That was a real service by Grandpa," Kevin Kozlowski said.
And when it was time for it all to come off, little brother Steven stepped up. "He got his hair buzzed, because he wanted to be like his brother."
Sherry Kozlowski said she'd advise families in a similar situation to pray -- and then learn to accept help.
"This was very difficult for me. I have never been one to ask for help," she said. "In a situation such as this, you can't do it alone. ... It not only helps my husband and me out, but it helps our loved ones to cope.
"Most of all, you have to trust your doctors," she added. "We got very lucky in that area."
Ambrusko said he hopes that research can generate a "more directed or focused therapy on myeloid leukemia cells," explaining that treatments now are directed primarily toward leukemia in general.
Michael's looking ahead, too. He anticipates leaving the hospital and playing basketball, going to a Pirates game, "playing with my dog Scoochie and sleeping in my own bed!"
He's also excited about a mid-October trip to Walt Disney World in Florida that's been arranged by the Make-A-Wish Foundation.
"When he found out that he got to skip to the front of the lines in Disney, he said 'I'm there!'" his mother said.
Michael, an aspiring scientist and NASA enthusiast, also asked to visit Cape Canaveral while the family is in Florida.
"He wants to be 'Houston'," Sherry Kozlowski said. "He likes to see how things work."
Donations to help with Michael's expenses may be sent to the Michael Kozlowski Fund, c/o National City Bank, Olympia Shopping Center, McKeesport, PA 15132.
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