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Back to being just a boy

Alex Myers returns to school after a year of treatment for leukemia, but the long-term side effects of the cancer drugs are unclear

Tuesday, September 29, 1998

Story by Ellen Mazo, Post-Gazette Staff Writer; Photos by Andy Starnes, Post-Gazette Staff Photographer

His once straight, thick dark hair has grown back with curly blond streaks highlighted from the summer sun. Definitely finer. The puffy cheeks are gone. Alex Myers is a little taller, and lean once again - a 7-year-old boy whose favorite school yard game is "Boys Chase Girls."

 
  Alex Myers in his second-grade classroom in Oakmont. Photo Journal -- Alex Myers: Just a boy

Doctors at Pittsburgh's Children's Hospital have been treating Alex for the past 14 months with chemotherapy and steroids to cure him of acute lymphoblastic leukemia, the most common form of cancer in children. While the Oakmont boy has reached a point in his treatment that has allowed him to attend second grade at the Tenth Street School, play soccer and take jazz dance lessons again, he still has more than two years of treatments to endure.

By bombarding the child's system with a complex combination of drugs, doctors hope to prevent the recurrence of leukemic cells in the boy's bone marrow, spinal fluid and testicles.

At this stage, doctors are balancing the amount of drugs with how much his bone marrow can tolerate. They want to make sure his blood cell counts are kept high enough to protect his immune system.

Alex is in remission; he will not be declared cured until 2005 - five years after his treatment ends. From the beginning, Children's oncologist Dr. Jeffrey Hord, Alex's doctor, has placed the boy's chances for survival at 92 percent, even higher than the national average of 85 percent for children diagnosed with the cancer.

A major reason for the optimistic outlook is that Alex has responded well to a medical protocol constantly being updated and used at 115 pediatric hospitals nationwide, including Children's.

But after more than a year of trips to Children's Hospital's emergency room with bruises and fevers, with countless sleepless nights, temper tantrums, fatigue, ravenous appetites or no appetite at all, his mother, Sharon Myers, worries:

What will be the long-term developmental and physical consequences of the regimen - particularly the effects of the steroids and drugs on Alex's cognitive skills?

Doctors don't know.

 
  More about Alex:

Alex's vital statistics


Photo Journal -- Alex Myers: Just a boy


Coping with a child's illness: A shared burden

United, divided: coping with a child's illness

A pause for thanks

   
 

Still, as vicious as the medical procedures seem, they are a far cry from the radiation used on young patients only 20 years ago.

Then, doctors found that the radiation also affected the children's developing brain cells. Intelligence scores of once bright, active children dropped precipitously.


Another measure of uncertainty

The studies on the current methods are contradictory.

"Some studies suggest yes, there are effects on intelligence. Others say no," Hord said.

But what is a parent to do? Stop treatment?

Of course not, Alex's parents agreed. But that does not erase the persistent fear of what the drug bombardment will cause.

Alex was diagnosed a week before his Aug. 3, 1997 birthday, when he turned 6, and the treatment designed to kill the leukemic cells began lowering the boy's red and white blood cell counts, as well as his platelet levels.

His fragile immune system immediately made him anemic, prone to infections and internal bleeding.

The treatment began with an intense "induction" period, and has progressed to different stages of consolidation of drugs, maintenance and "delayed intensification" - all therapies of a variety of drugs given intravenously, orally, by spinal tap, or with simple shots into the muscle or tissue.

Doctors inserted a plastic shunt in Alex's right chest so they could quickly and easily inject him, or provide blood and platelet transfusions. While some of the drugs could be taken orally later, during the first week a steady stream of chemotherapy drugs and steroids - Prednisone, Asparaginase, Vincristine and Methotrexate - flowed into his body through an intravenous line.

From those days on, his parents took him weekly to Children's Marty Ostrow Outpatient Oncology Clinic for spinal taps, bone marrow biopsies, as well as injections of the drugs into muscles in his legs or directly into the spinal cord.

He went home with prescriptions for more drugs.

During this time, Alex lost his hair and had bouts of constipation and skin rashes. His face became puffy and he often would rise at 4 a.m., ravenous. The food he ate left a metallic aftertaste. He cried a lot. He was angry. His bones ached. The Vincristine, for example, created a muscle weakness in his legs. He sometimes dragged his feet when he walked.

 
  At Tenth Street Elementary, one of the favorite games is "Boys Chase Girls." Alex is chasing schoolmate Carly Saxon. Photo Journal -- Alex Myers: Just a boy

Hord assured Alex's parents, Paul and Sharon Myers, that the side effects were reversible. He suggested, however that they hold back Alex from school for a year because no one could prevent the spread of germs among 6-year-olds.

There was no question last year that Alex was both intellectually and emotionally ready to enter first grade. But because he couldn't go to school, Alex's parents had his first-grade teacher tutor him at home.

On the first day of first grade, Sharon Myers took Alex to meet his first-grade classmates. Later, when his blood counts rose, he occasionally was able to attend class. But for the most part, first grade teacher Mary Ann Yingling tutored him each afternoon at home.

"If he had to miss school at all, he was at the right age," said Paul Myers, 37, systems manager for The Workplace at Shadyside Hospital. "He may have missed out on some of the camaraderie, but overall I think he's doing fine."

Sharon Myers, 38, however, insisted that the school district test Alex to provide them with benchmarks to measure the boy's progress.


A baseline test

At the beginning of first grade, Alex was tested by school officials and found to be performing well above average. After nine months of chemotherapy, his intelligence scores placed him in the gifted category, which includes those who test at 130 IQ or higher.

The tests indicated "some weakness in short-term memory," according to the results, "but we don't know if it is because of the drugs."

Without anyone telling her, Yingling came to know when Alex was undergoing drug treatment.

"He'd be very excited and tell me something about what he did one day, and then the next day he'd tell me the same thing - just as excitedly - as if he had never told me before," she said. "I think a lot depended on when he had drugs, what was going on in his little body at the time."

She said he loved math more than reading, which may be why his reading skills were not as far advanced as for other boys his age.

But she believes he will catch up quickly, now that he is attending school.

"I think he would have done better if he had been in school," Yingling said. "He missed the interaction, the questions and answers, the critical thinking that goes with that."

Yingling is pleased that Sharon Myers insisted that her son take the standardized achievement tests to provide a baseline.

Sharon Myers, senior systems coordinator and an assistant vice president at Mellon Bank, was relieved with the findings.

Paul Myers was not surprised.

"I knew it," he said. "It just confirmed it for me. It's not that I think he's of superior intellect. I just know that he's doing well. And he'll continue to do well. Living with him day to day shows that."


Trying to be normal

Alex was understandably apprehensive the night before his first day of second grade. He cried. He didn't want to be singled out. "The kids will think I'm peculiar," Alex told his parents.

In many ways, he avoided special attention over the summer. He attended Zoo Camp at the Pittsburgh Zoo with his sister Tyler, 10; spent time at Fenwick Island, Del., with his family; and attended a Christian camp with Tyler for children with cancer and their siblings.

At 8:10 a.m. on Sept. 2, a happy Alex walked with his sister the several blocks to the front steps of the Tenth Street School - his empty backpack swinging from his shoulders.

The children lined up in front of their new teachers - and soon Alex was among 20 children who followed Sharon English to room 205.

She handed out name tags; the children flipped through their books and boxes filled with pencils, crayons and scissors. She took orders for lunch - pizza that day - and immediately began explaining second-grade rules and decorum.

They talked about the importance of hand-washing and general cleanliness - points she continues to emphasize because of Alex.

Over the next few days, she returned to the subject of germs.

"I could tell when I started, by Alex's face, that he didn't want me to say anything about him, so I didn't. There's no reason to make Alex feel uncomfortable," English said.

"We cover our mouths when we sneeze," she told the class. "We always wash our hands after going to the bathroom."

From the minute he saw that his best friend Tommy Skemp was in his class, Alex knew that school would be fun.

"I like second grade," he told his mother later that day.

Still, the disease he is so tired of continues to be very much a part of his life.

Already, Alex has missed a day of school for chemotherapy. He was to have returned to class in the afternoon, but was too exhausted after a spinal tap. Doctors performed the test to monitor his progress and to make sure he was still in remission.

Sharon Myers also alerted English that Alex may have some problems while undergoing his monthly, five-day cycle of Prednisone - bone pain, particularly.

Once a month, he takes Vincristine intravenously, which makes his jaws sore, and Methotrexate, which causes nausea and vomiting.

"Steroids have been a difficult drug for us because they make Alex moody, aggressive, ravenous and an insomniac for about three or four days," she wrote in a note to English. "Sometimes he gets very irritable and just doesn't feel good, but doesn't know why. He also gets bone pain that gets intense at times."

Sharon Myers said she "tries to be understanding." But she told English that she doesn't tolerate misbehavior and didn't expect the teacher to either.

On days when he gets tired, Alex asks English to be excused so he can go lie down in the nurse's office.

"Sometimes, he lies down for two minutes, another time he stays for maybe 10 minutes," said Bonnie Colaianne, school nurse.

One day, the bone pain caused by the steroids became so severe that Colaianne had to call Sharon Myers.

Those times are tough.

"You don't realize the tightrope you're walking with this until you go through it," his mother said.

"Alex is doing well, but he just wants to be like everyone else," English said.

"Well, if what he told me is true, Alex is doing just fine," Paul Myers said. "He told me that the teacher put his name on the board for talking too much in class. That sounds like Alex."



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