Talking to Teachers About Childhood Cancer

This page is for parents getting ready to talk with their child's school about cancer. It covers what teachers need to know, what to put in writing, and your child's rights at school.

A teacher does not need the protocol, the blood counts, or the odds. A teacher needs to know what to expect and what to do about it. That list is short, and you only have to write it once.

Most staff can work from six facts:

• How many days the child may miss, and which weekdays clinic visits fall on.
• Whether the child tires fast, and what a rest break should look like.
• Whether there is a central line, and what that means for gym and recess. A central line is a soft tube placed in a large vein to give medicine and draw blood.
• Which medicines come to school, and who may give them.
• Which classroom illnesses you must hear about that same day.
• One phone number for you, and one for the clinic.

Keep the medical story short. "He is being treated for leukemia and should finish in June" is enough for most staff. What the child tells classmates is a separate choice, and the child should lead it.

Start with the classroom teacher, the school nurse, and whoever runs health plans for students. That last person is often called the 504 coordinator. In middle and high school, add the counselor who controls the schedule.

Then ask the school to name one contact who passes news to everyone else. NCI suggests talking with people at the school and the hospital to make a plan for your child's schooling. Many hospitals have an education coordinator who can help. That keeps you from sending the same email seven times when a treatment date moves.

Ask your oncology team for a signed letter. NCI suggests a letter that describes your child's medical situation, limits, and how much school your child is likely to miss. A call from a parent carries less weight than a letter from the clinic. Many schools want the letter on file before they act.

Ask the team to spell out:

• Contact sports, gym, and playground limits, with dates.
• Whether the child may skip crowded assemblies or eat lunch in a quiet room.
• Sun limits during and after certain drugs.
• Whether the school must call you about chickenpox or measles in the building. For a child on chemotherapy, that call is urgent, not routine.
• Whether the child may wear a hat or head covering in class.

Give one copy to the nurse and one to the front office. Ask for a fresh letter when treatment changes.

Fatigue during treatment is not ordinary tiredness, and rest does not always fix it. Ask the doctor how treatment may affect your child's energy and schoolwork.

NCI suggests asking about an individualized education plan (IEP). It can include extra help with class assignments and tests, tutoring, and services such as counseling, speech therapy and physical therapy. Ask the school which supports fit your child.

Ask for the pile to be trimmed, not just delayed. Twenty worksheets waiting after a hospital week help no one. Try this question with the teacher: "Of the work he missed, which three items actually show he learned it?"

Some treatments change how a child thinks, not just how much energy the child has. NCI names these risks. They include chemotherapy given into the spinal fluid, high-dose methotrexate or cytarabine, surgery on the brain or spinal cord, and radiation to the brain, spinal cord or whole body.

The changes are often quiet. NCI lists problems with memory and attention, trouble solving problems, and trouble learning to read, write or do math. It also lists a slower ability to learn and use new information. A bright child can look lazy when the real problem is speed.

If a teacher says the child "isn't trying like before," treat that as medical news. Ask the oncology team to refer you for neuropsychological testing. That is a set of tests that measures attention, memory, and thinking speed. Bring the report to school.

Health details you hand the school usually become part of the education record. The Family Educational Rights and Privacy Act, or FERPA, governs that record. Parents may see it, ask to correct it, and control most sharing of it. School staff with a real educational reason may read it without asking you.

So decide on purpose what goes in the file. You can tell the nurse more than you tell the yearbook advisor. FERPA rights move to the student at age 18, so start that talk early with a teenager.

Schools use two separate legal tools. Staff mix them up all the time.

Section 504 of the Rehabilitation Act is a civil rights law. It covers a student whose impairment substantially limits a major life activity. The federal rule lists learning, walking, and caring for oneself among those activities. A 504 plan sets out accommodations. The district must evaluate the child first. That review must draw on several sources, not one test. A group of people who know the child and the data then decides. Parents get notice, access to records, an impartial hearing, and a review process.

The Individuals with Disabilities Education Act, or IDEA, is a different tool. It pays for special education and related services. A child must fit one of thirteen categories. For a child with cancer, the usual route is "other health impairment." The federal rule defines that as limited strength, vitality, or alertness from a chronic or acute health problem. The problem must also harm school performance. The rule names leukemia in its own list of examples.

Either you or the school may ask for an IDEA evaluation. It must be done within 60 days of your written consent, unless your state sets another clock. Put your request in writing and date it, because the clock runs from a written record.

When a child cannot attend for a stretch, the district may be able to send a teacher to the home or hospital. This is called homebound or hospital instruction.

Ask the 504 coordinator or the special education office for the district's homebound form. It usually needs a doctor's signature and an expected length of absence. Then ask three things. How many hours a week does the child get? When does it start? How do the hours shift once the child returns part time? Large children's hospitals often run a school program on site, and that teacher can speak to the district directly.

Some of these calls go to the clinic and some go to the school. Sort them out in advance so nobody hesitates.

• Call 911 or go to an emergency department if staff describe new confusion, or sleepiness the child cannot shake off. MedlinePlus lists confusion that comes on suddenly as a reason to call 911 (MedlinePlus). Do not drive yourself if your child is very unwell.
• Collect your child and call the oncology team at once, at any hour, if the school reports a fever during chemotherapy. The CDC treats fever on chemotherapy as a medical emergency at 100.4 °F (38.0 °C) or higher. One reading is enough. Use the after-hours line. If you cannot reach them quickly, call 911 or go straight to an emergency room and tell the hospital your child is on chemotherapy. Do not route this through the school office and do not sit at home waiting for a call back. Do not drive yourself.
• Call your care team right away, at any hour, if your child has a fall at school.
• Call the school the same day if you learn of chickenpox, shingles or measles anywhere your child has been. Ask the school to call you the same day in the other direction too. For a child on chemotherapy that exposure is urgent, not routine. Tell the care team right away too.
• Call the school within a day or two if your child is being teased about hair loss, weight change, or a feeding tube.

Returning to School After Cancer covers the re-entry visit. School 504 Plans During Childhood Cancer goes deeper on the paperwork. See also Siblings and Hospital Days During Childhood Cancer, Talking to Your Child About Cancer, Fertility Questions for Childhood Cancer Survivors, and Transition to Adult Follow-Up After Childhood Cancer.

• Frequently Asked Questions: Section 504 Free Appropriate Public Education (FAPE), U.S. Department of Education
• IDEA Sec. 300.8(c)(9), Other Health Impairment, U.S. Department of Education
• IDEA Sec. 300.301, Initial Evaluations, U.S. Department of Education
• What is FERPA? Student Privacy Policy Office, U.S. Department of Education
• Children with Cancer: A Guide for Parents, National Cancer Institute
• Late Effects of Treatment for Childhood Cancer (PDQ), National Cancer Institute
• Fever during chemotherapy, CDC
• 34 CFR 104.3, 104.35 and 104.36 (Section 504 rules), eCFR