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United, divided: coping with a child's illness A child's life-threatening illness can create stress in the relationship of the two people he needs most - his parents Tuesday, April 14, 1998 By Ellen Mazo, Post-Gazette Staff Writer
This article is part of an occasional series on Alex Myers and his family, and how they're coping with serious illness. It will contain information on where people facing similar situations can find help.
Even in the healthiest of households, parenting differences between moms and dads are not unusual.
Stay up an hour later? Sure, says Dad. No way, says Mom. Have a friend over? OK, says Mom. Not today, says Dad.
The conflict is all the more amplified when a sick child is involved.
When 6-year-old Alex Myers - diagnosed with acute lymphoblastic leukemia in July - wanted to go sledding a few days after Christmas, his mother said no. Sharon Myers feared his weakened immune system would leave him especially vulnerable to injury.
Dad said OK, let him live a normal life. So Paul Myers joined his son Alex and 9-year-old daughter Tyler for an afternoon of sledding in their sloping Oakmont back yard.
A few days after that, on New Year's Day, Alex, Tyler and Paul went out for another round of sledding. This time, Paul Myers acceded to his wife's fears and instructed Alex to watch from the sidelines.
But hours later, they rushed Alex to Children's Hospital with a fever, several bruises and a nose bleed, all caused by days of extra activity and indications of a possible infection, anemia and easy bleeding that could be life threatening.
This was their first emergency room visit since Alex was diagnosed with leukemia five months earlier. Alex lay on an emergency room table while doctors and nurses probed and prodded his little body.
Sharon and Paul Myers sat on opposite sides of their son.
"Do you understand that if he fell today, he'd have bled profusely?" Sharon said to Paul.
He didn't answer.
For Paul and Sharon, both 37, just how to manage life with a child with leukemia and his healthy sibling has become a balancing act between a father and mother who don't always see eye-to-eye.
"This kind of illness can put a lot of stress on a relationship," said Dr. Jeffrey Hord, Children's Hospital oncologist who is treating Alex. "It's a tough time for everyone."
"I'm not saying I don't think about his leukemia," Paul Myers said recently. "But when I think about going outside versus being cooped up in the house, I'd prefer it for Alex to go outside - even if he can only watch."
Alex and his father enjoy wandering for hours through the Pittsburgh Zoo - especially now that one of his favorite elephants is expecting.
To Paul Myers, the excursions are as critical to his son's health as the chemotherapy, steroids and antibiotics.
"The antibiotics he gets are preventive medicine. So is this," he said.
Sharon wants to wrap her little boy in cotton until he is cured; Paul wants his son to lead a normal, active life.
A common side effect
"Fortunately these differences exist between parents," said Karen Christman, manager of Children's Hospital's social work department.
"There is always a parent who is more cautious, and one a little more adventuresome. The child is able to take advantage of both, and that's great."
Christman acknowledged that the stakes seem higher for families with sick children.
"But when parents acknowledge that they're each approaching this a little bit differently it plays out in a very normal way," she said.
What makes handling Alex's disease so difficult, Sharon and Paul say, is that for weeks at a time their son doesn't seem as if he's sick at all.
Like most children, Alex is forever moving, active, just as he was on a recent Lenten Wednesday when Sharon Myers spoke at the Oakmont Presbyterian Church.
"He climbs, runs, jumps and still bugs his sister," she told members of the congregation as Alex played with friends in the back of the hall.
"Everybody looks at you and asks, who is your son who is sick? And I have to say it's that kid running around like crazy. He's not that picture of a horribly sick child."
That has made it harder for Sharon and Paul Myers to agree how to treat their son with a life-threatening illness.
Acute lymphoblastic leukemia, the most common form of cancer in children, is a rapidly forming disease that affects immature, blood-forming cells that accumulate uncontrolled in the marrow.
The loss of red cells leads to anemia; a lack of functional white cells impairs the body's ability to fight infections; and a shortage of platelets results in bruising and easy bleeding.
Except for occasional outbursts, Alex accepts his treatments - including bone marrow biopsies, intravenous chemotherapy and countless blood tests - with equanimity.
Alex doesn't talk about losing his brown hair to chemotherapy, but never leaves home without one of his 30 baseball caps to cover his bald head. He and his mother saved strands in a small metal tin, "so I can visit them," he said.
Then again, he occasionally likes to shock his friends by suddenly pulling off his hat: "Look! No hair!"
Several weeks ago, Alex was dismayed that his treatment had to be delayed because of his low platelet counts.
"But I want to tell Dr. Hord my jokes," said the boy. Hord now has a stock of "knock-knock" jokes.
It may have been late in the fall when Sharon Myers realized that Alex's leukemia wasn't going to just go away.
She kept badgering Hord for permission to let Alex attend his first grade class at the Tenth Street School. "Weren't you listening? It's not safe for him to go when his blood counts are low," Hord responded.
"You try to make everything as normal as possible," she said later. "And then you finally understand that it isn't."
When Alex's red blood counts are low, he is particularly susceptible to infection. Alex's first-grade teacher, Mary Ann Yingling, tutors him at home every afternoon.
Scared and hopeful
Sharon Myers still cringes, remembering last July when Alex played a vigorous soccer game - only hours before his pediatrician notified them that the boy's blood counts were dangerously low.
If he had been hit, he could have bled internally. That did not happen. In fact, Alex showed no signs of being sick.
Alex immediately began weekly chemotherapy and steroid treatments at the Marty Ostrow Oncology Outpatient Clinic. His treatments will continue for slightly more than three years to assure that no leukemic cells reappear in his spinal fluid, bone marrow or testicles.
He is considered to be in remission - but not yet cured.
Hord repeatedly points out that, even with the setbacks, Alex's treatment is going well.
Sharon Myers isn't always convinced.
"It scares me so much because he's on so much medicine, and I know that the drugs Alex is getting can cause heart damage or pancreas damage," Sharon Myers said. "With the IVs [intravenous] and the pills and the steroids, Alex gets puffy and agitated. He's up at 4 a.m., so hungry that he has to eat right then. He's lost his hair, and he will again."
After Alex's diagnosis and initial treatment, the family had a quiet few months. That changed by the end of the year.
When he was brought into the emergency room New Year's Night, he was tired, but cheerful.
Nurse Colleen Zangara wrapped a blood pressure cuff on his arm. Alex looked up at her: "I like this," he said. "It squeezes like a big hug."
After he was admitted, Sharon Myers drove home to Oakmont, where her parents, in from Philadelphia for the holidays, had stayed behind with Tyler.
Paul pulled out the reclining chair next to Alex's bed on the eighth floor. He stayed through the weekend while his son had several blood and platelet transfusions, and then was sent home.
On March 20, Alex returned to the clinic to begin another round of intense chemotherapy and steroid treatments. However, Alex's treatment was delayed a week because his platelet counts still weren't high enough to withstand higher doses of chemotherapy and steroids, and his liver was slightly enlarged.
"None of this is at all uncommon," Hord reassured Alex's parents. "Every patient is a little bit different, and every patient responds individually."
Persevering
But on March 21, he was re-admitted to Children's, just overnight. Alex, who complained of stomach pains, had a fever.
Again, his father pulled out the chair to sleep next to his son, and within 24 hours Alex went home.
Sharon and Paul Myers don't know what to expect over the coming months as Alex completes another intense chemotherapy and steroid treatment.
"You have to live your life the best you can," Sharon Myers said. "That's what we're doing."
Related stories:
Running for help: Friends raise funds to benefit Alex
Previous stories about Alex Myers:
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