When a 6-year-old boy is diagnosed with leukemia
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Republished online as originally printed in the Post-Gazette Aug. 26, 1997.
Six-year-old Alex Myers had the kind of summer day in July that could tire anybody.
It started at St. Margaret Memorial Hospital, where a nurse had pricked his finger for a blood test. His parents, Sharon and Paul Myers, requested the test after their son's recent annual checkup.
They said he seemed crankier and more tired than usual, and wondered if he might need vitamin supplements before starting first grade at Oakmont's Tenth Street School.
After the blood test, his mother took him and his sister, Tyler, 9, for a Gateway Clipper boat ride down the Ohio River to the Emsworth Locks. Later, they returned home to Oakmont where Alex had a soccer game. At first, he didn't want to play. He sat on the bench, his head in his hands. "I don't want to," Alex said when his teammates begged him to join them on the field.
Alex relented. Once on the field, he ran and kicked for 1 1/2 hours, enthusiastically helping his team score.
Tired and hungry, the family stopped at McDonald's where he ate two "very big" cheeseburgers.
After the children were in bed at 9, Sharon checked the answering machine. "We're popular, aren't we?" she joked to her husband Paul as she pressed the rewind button.
There were four calls - all from the same person: Alex's pediatrician. "Take Alex to Children's Hospital emergency room," he implored. "Immediately."
Less than 20 hours later, Sharon and Paul Myers heard three words that would forever change their family's lives:
Acute Lymphoblastic Leukemia.
Overnight, they had gone from thinking about vitamins to coping with an illness that just 20 years ago was synonymous with death.
"But Alex just played his heart out at a soccer game," Sharon told the pediatrician when she called him back that first time, Monday, July 28.
"Hang up. Get to Children's now," Dr. Mendel Silverman told her. By 10:30 p.m., doctors and nurses were preparing Alex for blood and platelet transfusions. The blood test that morning showed that his red blood cells and platelet counts were dangerously low.
There were few indications that he was not feeling well. Alex seldom sat still. One moment, he could be busy with kitchen science experiments with mixtures of vinegar, spices, oil and food coloring. Moments later he could be out the door, climbing through his back yard playhouse, or high in a tree. His favorite sports are soccer and T-ball, but he likes taking jazz dance lessons, too.
He has grown three inches - to 46 - since the end of kindergarten. At a wiry 43 pounds, his appetite had been hearty and he loved vegetables, salads and steak.
"I looked at Alex and I thought they could treat him and we'd just go home," Sharon said.
Instead, doctors took Alex to the operating room to insert a shunt - a plastic device that keeps a vein open for drawing blood and for transfusions - in his upper left chest. It was necessary for all the procedures he will endure. On Thursday, July 30, doctors began the long chemotherapy regimen of shots and pills to treat the form of cancer that affects the bone marrow and blood.
Alex's doctor, oncology specialist Dr. Jeffrey Hord, spent several hours with Paul and Sharon, explaining that Alex had been stricken with the most common form of cancer in children.
It has an 80 to 90 percent cure rate if treated effectively with drugs.
Many factors are in his favor:
He is under 10, but older than 2; his lymph nodes weren't swollen and his spleen was barely enlarged when he was diagnosed. His spinal fluid was clear of leukemic cells, too. He had no fever.
But treatment will be longer for Alex than for a girl because cancer cells can hibernate in the testicles. Remission never means a cure in the first few years.
For those reasons, chemotherapy for boys lasts three years. For girls, it is two years.
Sharon called her parents in Philadelphia. "Wait. Get a second opinion," her mother pleaded. She had seen Alex only weeks earlier, and he had been as energetic as ever.
But Sharon and Paul knew they had to make decisions quickly. One minor infection could kill him because of his weakened immune system. Should they hold him back a year in school?
Should Sharon, 37, continue her part-time job as senior systems coordinator and an assistant vice president at Mellon Bank?
Would their health insurance cover the costs?
How would Tyler cope?
How much should they tell their families - Paul's in York and Sharon's in Philadelphia?
And, finally, would Alex survive?
Late that night at Children's, Sharon looked at her son, impish and restless, unable to sleep. He was tethered to an intravenous tube dripping chemicals into his veins, but he didn't look sick.
Hord explained that within a few weeks the combination of chemicals, including steroids, would make Alex's face puffy. In a few weeks, he would lose his hair.
Sharon picked up a book, "Some Things Change and Some Things Stay the Same," by Fred Rogers of Mister Rogers' Neighborhood. Alex sat on the edge of the bed as she read it to him.
That was the first time Alex heard the word "cancer."
"It was the first time I said the word aloud. I never could say it before. It was the 'C word,' " Sharon said.
Friends called. And called. They sent food to the house, and so many toys that the Myers donated bags of them to the hospital.
One of Sharon's colleagues at Mellon Bank sent out a message asking others to donate blood.
Paul, 36, a systems manager for The Workplace at Shadyside Hospital, discussed Alex's diagnosis with doctor friends.
Sharon started a journal, listing every change she noticed in Alex. The couple attended a parents' support group session at Children's.
"All the parents said the same thing," Paul said. "They believe that their sick child is strong enough to handle having cancer."
"You're just surprised that you can do this and you're grateful your kid is tough enough. We are."
On the seventh day of Alex's treatment, the blood cell count was still shaky.
By Day 14, Alex had turned the corner. His blood count was higher. Doctors could continue the treatment. But he will not start school with his classmates tomorrow.
Alex will be tutored at home. Maybe by spring he will be able to attend classes, Hord said. For awhile at least.
Seven days after entering the hospital, Alex went home on Aug. 3, his sixth birthday.
"What do you want to do?" Paul asked.
They walked to the end of the street, and climbed down the slate stairs to Allie's Pond - a small body of water from a spring source their neighbor has filled with hundreds of tiny fish, and several catfish.
He crouched on the tiny, wooden dock, at first throwing bread crumbs across the water. Countless fish rushed to the surface, gobbling the pieces. Alex sat patiently, swishing a butterfly net in the water.
Occasionally, he lifted it and counted the fish. Then he turned it over, and as the fish swam away, he started over.
"He stayed there for several hours. We didn't talk. He just fished," Paul said.
A few days later, Alex turned to his father, and said:
"Am I going to die?"
Paul didn't answer and changed the subject.
"I kicked myself because I wasn't prepared for his question," Paul said later. "The next day, I talked with a doctor friend … He said, "You tell him that `we're going to make you better.' "
That evening, Paul asked Alex if he remembered the question from the day before.
"You mean the one you never answered?" Alex said.
"The answer is absolutely not," Paul said.
"OK," Alex said. "Can we go fishing now?" ?
• Medical costs: from July 28 to Aug. 4, the most recent bills available: almost $20,000.
• Health Insurance: Select Blue through Highmark Blue Cross Blue Shield so far has covered all medical costs. Not included are parking fees at Children's Hospital and other incidentals.
• Blood counts when entering the hospital:
- Red blood cell count was 4.9 per deciliter - well below the normal 12 to 14 per deciliter.
- Platelet count was 25,000. Normal range is 150,000.
- Percentage of white blood cells that were leukemic: 95 percent.
• Blood counts after three weeks of intensive chemotherapy treatments:
- Red blood count, 8.5 per deciliter.
- Platelet count, 148,000.
- Percentage of white blood cells that are leukemic: Less than 1 percent.
• Chance of survival: 92 percent, based on his response to chemotherapy.
First Published June 17, 2009 12:00 am