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Getting Tested

Researchers believe 40 to 50 percent of children treated for cancer are at risk for long-term cognitive side effects . . . side effects that affect thinking and learning

The Four W's

1). Who should be tested?

All children who receive cancer treatment that affects the brain should be tested. This includes children who have had cranial radiation or intrathecal chemotherapy, particularly kids treated at a very young age. "Not all children will have these problems, but it's better to know early," said Marcia Leonard, director of the U-M Pediatric Can-cer Survivorship Program.

2). When should you be tested?

At major developmental steps: 18 months to 2 years old; kindergarten; third grade; start of middle school; start of high school; high school graduation.

3). What are the signs?

Problems can be subtle and may not start showing until middle school or later. Warning signs include a sudden drop in performance between elementary school and middle school; difficulty completing homework in a reasonable time frame; drop in motivation or frustration over homework.

4). Where can we get help?

The U-M Long-Term Follow-Up Clinic provides neuropsychological testing referrals for appropriate patients. Oncologists will refer patients to the follow-up clinic when they are three years out of treatment.

Parent to Parent Advice

Be your child's advocate.
You're responsible for your child's best interests. Be patient and persistent to get the help you need. If the Individualized Education Plan isn't leading to progress, ask for a meeting.

Know your rights.
Childhood cancer survivors are covered under the Individuals with Disabilities Education Act, which requires that public schools provide free and appropriate education to all children between the ages of 3 and 21. In addition, the Rehabilitation Act of 1973, Section 504, requires all federally funded educational institutions to provide accommodations for students with certain physical or mental impairments.

But, be nice.
You know the old saying about flies and honey. Same thing applies with teachers and coffee.

And, meticulous.
Take notes at your IEP meeting. Follow up if you think something has been omitted from your child's plan.

Find a way to be a presence in your child's school.
For Lissa Strodtbeck, that meant volunteering at school. If that isn't possible, then make a point to pick up your child from school. Take the opportunity to chat with teachers to find out what's going on and how you can help work on concepts at home.

Make playtime a priority.
"Kids don't care about learning disabilities, said Strodtbeck, who has two other children, Ethan, 9, and Gillian, a newborn. "They demand that Isaac come up to a certain level, and he responds to that."

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Print the spring, 2007 issue of Thrive
-this article first appeared in that issue

Long Term Follow-Up Program

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