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Lessons Learned

Addressing long-term side effects of cancer in the classroom

Time was short.
Lissa Strodtbeck was trying to get her middle child, Isaac, out the door to soccer practice. She usually gives him extra time, but the hustle and bustle of family life doesn't always allow for that.

Today, it was just too much. Isaac threw himself on the floor, sobbing. He didn't want to go to soccer. Lissa gathered him up, hugging him until he finally got it out: He was frustrated. He couldn't follow the drills the coach wanted him to do. Dribbling the ball, kicking it into the goal, running back from the other end -- it was just too much to keep track of. Lissa talked to the coach.

"How about if I run through the drills with Isaac so he can see how to do it?" she asked. She was worried she might look overbearing. No problem, the coach said.

Today, Isaac loves soccer. A meltdown like this isn't typical for 7-year-old Isaac, whose teacher, Donelda Clevenger, describes him as "very polite." Usually he's good at hiding his confusion. When he doesn't know the answer to a question, anxiety flickers across his face before he makes a guess he knows is in the right neighborhood.

"He's a great faker," Micki Archer, his kindergarten teacher from last year, said with a warm chuckle. "In terms of learning, he's got a lot of splintered skills."

Like a lot of childhood cancer survivors, Isaac continues to feel the effects of his treatment years after it ended. Isaac, who was diagnosed when he was nine weeks old with acute myelogenous leukemia, received eight doses of intrathecal chemotherapy -- chemotherapy delivered directly to the brain -- as part of his treatment. Although it saved his life, it interfered with his brain's development, causing the learning disabilities.

Almost 80 percent of children diagnosed with cancer survive at least five years, according to the national Cancer Institute, which estimates there are 270,000 pediatric cancer survivors in the United States. Although Isaac's case may be more severe than others, researchers believe that 40 percent to 50 percent of children treated for cancer are at risk for long-term cognitive side effectsside effects that affect thinking and learning -- said Mary Best, Ph.D., a neuropsychologist and assistant professor in the U-M Department of Psychiatry.

"For the most part, what we see with kids who have had cancer treatment are subtle learning disabilities," Best said. "Sometimes they have significant learning disabilities, but the majority of patients have problems so subtle they can go on for a while before parents realize what's going on."

Well Prepared

The Strodtbeck family was prepared for this. Before Isaac started treatment, his medical team at the U-M Comprehensive Cancer Center warned his parents, Lissa and John, that the drugs could interfere with his brain's development. At 20 months, after suffering fits of rage related to his delayed ability to communicate, Isaac had his first neuropsychological test.

Neuropsychological testing differs from the tests schools provide. Typically, school assessments check whether a child's IQ matches her level of achievement. Neuropsychological testing, which Best conducts, assesses more specific skills, for example memory, problem-solving ability, attention, visual and verbal processing, and the ability to integrate these functions.

Steady Progress

The goal is to find out where a child's strengths and weaknesses lie. Parents can then work with educators to develop a plan that takes advantage of the child's abilities to compensate for weak areas, Best said. It also provides the foundation to request special education services guaranteed by law to children who have had cancer (see Getting Tested).

This summer, I gave a highlighted copy of the neuropsychology report to Isaac's teacher, so she knows: this is what we're dealing with," Lissa said. "we're not asking her to cater to him, but we do want her to have a full understanding, and this gives her very specific information."

The report was also helpful in developing Isaac's Individualized Education Plan, a required part of the Individuals with Disabilities Education Act, a federal law that helps children with special learning needs. After abilities are assessed, school officials meet with parents to identify specific problems, strategies to address them and a goal for improvement. If the goal isn't reached, Best said, the IEP needs to be changed.

Isaac's IEP included physical, occupational and speech therapists to help him catch up in a number of areas. But IEPs provide other kinds of assistance as well. For example, for children who have trouble with mental processing speed -- a common problem among childhood cancer survivors -- an IEP may recommend they be given a shorter assignment or more time to complete work.

Attentive Listening Skills

The problems a child experiences has a lot to do with when a child received cancer treatment, Best said. Generally, a child doesn't lose abilities that are already developed, but if treatment occurred very early -- as in Isaac's case -- it can have more severe effects later. In children who received treatment later in life, problems may not show up until the sixth grade or later when they are asked to process greater quantities of complex information.

"Kids can compensate a lot. If theyre really hard workers, they can keep up through elementary school but may start to have problems in middle and high school, when multiple teachers and classes are the norm," said Marcia Leonard, R.N., P.N.P., director of the U-M Pediatric Cancer Survivorship Program. "These kids certainly try; parents tell us that their children will work on homework for three or four hours, and they're still getting C's or less."

That's why it's important to get tested, so problems are identified early, Leonard said -- before frustration sets in and homework becomes a battle.

Works Well with Others

For the Strodtbecks, the testing is their baseline. Until Isaac was 3, his verbal skills were about a year behind. He had trouble with eye contact and wasn't especially social. His parents were even told at one point to prepare themselves for the possibility he may be autistic.

But by getting him involved in special educational programming early, Isaac has started to come into his own. He's a well-liked kid with a keen sense of curiosity.

"He did his job," Lissa said. "Now it's our turn to do ours."

Related Reading:
Getting Tested

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Print the spring, 2007 issue of Thrive
-this article first appeared in that issue -- the link opens as a .pdf document

Long Term Follow-Up Program