Living with childhood leukemia means tears, frustration and affirming faith

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Republished online as originally printed in the Post-Gazette Oct. 7, 1997.

What do you say when your sick child asks one morning: "Mommy, I prayed and prayed last night my leukemia would go away. Mommy, it's still there. I woke up and it's still there. Mommy, what happened? Mommy, I prayed."

Sharon Myers thought before answering. She wasn't sure she knew what to say, but she calmly told Alex, 6, that she has been praying, too.

"Some prayers take longer to answer," she said.

Alex seemed satisfied with her response, so she gave him cereal and milk and watched him pick out numbers on his placemat.

Then she went upstairs, shut her bedroom door and cried.

In remission

Nine weeks after being diagnosed with acute lymphoblastic leukemia in July, Alex Myers is sick of being sick. The Oakmont boy had no symptoms when doctors discovered that his body was overrun by leukemic cells. ?From Alex's vantage point, the attention he received from family and friends accompanied by countless gifts overshadowed the initial poking and prodding by doctors.

But in the weeks that have followed, the painful procedures that required doctors to check his spinal fluid and bone marrow have become scary. His hunger at one point was so voracious that he would get up at 4 a.m. to eat his first meal. His body has become bloated. Food tastes funny, almost metallic. He's tired. He can't sleep.

He had spent a summer anticipating first grade. But he's home, instead, getting tutored because doctors said his immune system is so fragile. ?For this form of leukemia, the most common form of cancer in children, Alex faces another three years of chemotherapy shots and pills, according to Children's oncologist Dr. Jeffrey Hord.

For that time, he will wear a plastic device in his chest that keeps a vein open for drawing blood and for transfusions.

Within several weeks of treatment, the number of leukemic cells in his blood has dropped from 95 percent to 1 percent to negligible.

Alex is in remission.

He is not cured.

Trying to explain

"I tried to explain to the congregation that there is no answer why this happens," said the Rev. Steve Wilson, pastor of the Oakmont Presbyterian Church. "We can say some things theologically, and they're correct, but they're emotionally inadequate."

The Myerses have been attending the corner church since moving to Oakmont from Wilkinsburg shortly after their daughter Tyler, now 9, was born.

A parishioner suggested to Wilson that he postpone whatever sermon he had planned for Sunday, Aug. 3, so he could talk about Alex.

"We need to understand this," she said.

"Some of the evil that comes about happens because of human responsibility," Wilson said in his sermon. "Human negligence can also bring about evil. Obviously, there is no known human responsibility in the evil of leukemia. It falls into the second category - natural evil.

"Why does some evil come when it comes, when, where and how it does? Why do some have more tragedy in their lives than anyone should have to bear? Why do 'good' people who don't deserve it sometimes suffer more than bad people do?

"You and I have likely asked the endless questions before. And you know the answer. There is no answer."

Wilson and associate Pastor Paul Ballentine visited the Myers while Alex was at Children's Hospital for a week when he was first diagnosed in July.

"It was helpful, just talking and praying," Sharon Myers said. "I always try to get Alex and Tyler to say their prayers, and we talk about praying for special people."

Still, neither parent expected Alex's question.

"A child's faith can be very strong," said Brent Furlong, Children's oncology social worker who has been spent time with the Myers family since Alex was a patient.

"We try to explain to children that it's a process of asking God to help us be strong," said the Rev. Leslie Reimer, an Episcopal priest who serves as Children's chaplain.

Yet the leukemia is "still there," as a frustrated Alex pointed out.

"Often, all we can really do is hold a hand," said Sister Nora Egan, who as a representative of the Catholic Diocese of Pittsburgh is a part-time Children's chaplain.

Adjusting to the routine

"He cried and cried last night. He wanted us to ask the doctor to take away his medicine," Sharon Myers said a few weeks ago about Alex.

"He's hungry, but he says nothing tastes right. He's tired of the whole thing."

In the first weeks, Alex willingly swallowed the big pills and little pills. He sang his original song during spinal taps and bone marrow procedures.

"I got my blood taken. I got my blood taken. I got my blood taken. And it didn't even hurt."

And he always took home from the clinic extra cartoon-character bandage strips for Tyler and his favorite stuffed doll Bobby.

The regular visits to Children's Marty Ostrow Oncology Outpatient Clinic for Alex's injections, spinal taps and retrieval of bone marrow to check for leukemic cells had become part of the Myers' family routine. Paul and Sharon wanted their daily lives to be as normal as possible.

As a part-time senior systems coordinator and an assistant vice president at Mellon Bank, Sharon, 37, has been able to adjust her work days to Alex's clinic schedule.

Paul, 36, a systems manager for The Workplace at Shadyside Hospital, also has had enough flexibility to be with Alex for his treatments.

Sharon took the traditional first-day-of school picture before they walked to Oakmont's Tenth Street School on Aug. 27 - where Tyler entered fourth grade and Alex, first grade.

Because Hord, the Children's oncologist, had warned that it would be dangerous to expose Alex's fragile immune system to the day-to-day runny noses and sneezes common among 6- and 7-year-olds, Alex would not stay.

On that first day of school, Alex stopped in his classroom to meet first-grade teacher Mary Ann Yingling.

Alex sat on his mother's lap while Yingling greeted the 24 new students.

"I want to go home," he whispered in his mother's ear. They left. A few weeks later, Sharon stopped by Alex's classroom on parent's class night.

"I had to leave while Mrs. Yingling was telling the parents about what the children are doing, and how their days are," she said. "It was too upsetting to hear what Alex is missing."

She knows the disappointments will continue.

"All the changes are becoming evident," she said. "Alex is beginning to realize that we're in for the long haul. So are we."

A kind of answer

Several weeks after questioning his mother, Alex asked Paul the same theological question he had posed to Sharon: I prayed and my leukemia hasn't gone away.

"God is answering your prayers," his father told him.

"Look at all the medicine you're taking to make you well. Look at all the things the doctors are doing to make you well."



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