Going to School During and After Cancer Treatment

Even with everything else going on, staying connected to school is important for your child. School offers a place for learning, fun, and friendship that’s far from the world of cancer. It’s a sign of normalcy for them. Here’s why it’s crucial:

• Normalcy and connection. Being part of school helps your child stay connected with friends and the school community, providing a sense of a normal life.
• Learning and growth. It lets them keep learning and growing, staying on track academically.
• Eases the return. Staying connected during treatment makes returning to school after treatment smoother.

Ways to keep up with school during treatment

Children’s hospitals may have education coordinators and teachers to help children keep up with school during long hospitalizations or clinic visits. Hospital education coordinators and teachers might also coordinate with your child's school to arrange other types of instruction. If your hospital does not have a teacher on the team, talk with a social worker, nurse, or child life specialist about getting support to work with your child's school.

The school options that may work best for your child depend on many factors, including the type of cancer and the types of treatment needed. There are a few different ways your child can keep up with school during treatment, so it is best to talk with your team about the best school options.

Here are some of the options that might be available:

• Homebound instruction: If your child will be away from school for a while but is not in the hospital, some public schools might arrange for a teacher to work with your child at home.
• Hospital- or clinic-based school: Teachers from your child’s school might come to teach if your child has to stay in the hospital for a long time. Even one hour of school a day can help your child feel connected to what children without cancer do every day.
• Attending school during treatment: Depending on your child’s treatment schedule and how they feel, they might be able to continue attending school. Ask the cancer care team for advice. Some children enjoy seeing friends when they feel well and can go for small blocks of time during the school day.
• Individualized Education Programs (IEPs) and 504 plans: These services help your child participate in school during and after treatment.

Planning for your child’s return to school

It’s a good idea to talk to your child’s school and cancer team early. This can make going from treatment to school easier. Here are some things you can do to get ready:

• Ask the cancer care team when they think your child can go back to school after treatment.
• Get in touch with the school principal, teacher, nurse (if there is one), and school counselor. Tell them when your child will come back full-time. They might have forms for you and the cancer care team to fill out.
• Check if there are resources to help you plan for going back to school. Some hospitals have re-entry programs to help kids return to school after treatment. Someone from the cancer care team might go to meetings at the school or visit their classroom.
• Ask to schedule a family meeting so everyone knows what to expect. You might want to invite the principal, teachers, school counselors, and school nurse. Someone from the cancer care team might also join to help with the talk, depending on how the cancer center or hospital supports kids returning to school.
• Some kids might not be ready to go to school all day at first. Think about how long their school day should be when they first start back. After cancer treatment, it might take them a few weeks or a month to get their energy back. Talk to the cancer care team about what to expect before you meet with the school.

What the school should know

Here are some things you might want to write down and give to the school:

• The medicines your child takes and how to give them
• Medicines, treatments, or other things your child can’t have or can’t do
• Any special things the school needs to do to keep your child safe, such as precautions if another child comes to school sick
• Who to call with questions and emergency contact information
• What problems to look out for and when to call you
• How to manage emergencies
• Any extra help your child will need in school because of learning problems or other needs
• Anything else the school should know about your child’s needs

Tell them your child should be treated normally most of the time, just like the other kids, except for any special things they need.

Returning to school

If your child is still in treatment

Sending your child to school during treatment can be worrying, but the benefits often outweigh the risks. It takes teamwork, and most pediatric treatment centers can offer support:

• Educating the school: A member of the cancer care team can teach teachers and classmates about your child’s diagnosis and care.
• Creating a plan: Arrange meetings with the school to create a plan (504 or IEP) to support your child’s learning.
• Managing medicines: Work with the care team to adjust medicine schedules so your child doesn’t have to take them at school if possible.
• Handling side effects: Plan for managing side effects like fatigue, weakness, nausea, or pain at school.
• Communication: Keep the school informed when your child can’t attend.

Remember, you’re not alone. Your child’s education is a team effort, and together, you can help them succeed.

If treatment is over

Most kids go back to school full-time after their cancer treatment ends. Going back to school can help your child feel like things are getting back to normal. It’s also important for their learning and for being around kids their age.

Navigating mixed emotions

Returning to school might bring up mixed feelings. Some kids might feel happy about going back to school, while others might feel worried or anxious. Whatever they’re feeling is okay.

Transitioning back to school can be hard for parents too. You might be worried about things like:

• Your child feeling overwhelmed
• Your child getting sick
• Your child being teased by other kids because they look different

These worries are normal. Many pediatric cancer centers offer support as you make this change. They might have education coordinators or other specially trained team members who can help you and your child.

Talking with other kids about cancer

Other kids might have questions about cancer for your child. Some questions can be tough for kids to handle, so talk to your child before they go back to school about what to say. Some places that treat cancer send someone to your school to answer questions. Ask them if someone can come to your child’s class. Here’s what you can do to help your child talk to other kids:

• Let them know their friends might not understand a lot about cancer and might ask strange things.
• Give them some examples of what kids might ask, like “What’s cancer?” “Are you going to die?” “Can I catch it?” and “Can you still play?”
• Help them figure out how to answer each question. Younger kids might need a nurse or teacher to tell their class that cancer isn’t something they can catch.
• Tell them they can answer questions without explaining everything. They can say things like:
  • “I don’t really want to talk about that at school.”
  • “I’m not sure.”
  • “Maybe you can ask the teacher or the nurse.”
  • Depending on the situation, they might use one of these answers and then talk about something else, like school, playing, or something that’s not about cancer.
• Remember, every kid handles things in their own way. Help them find what feels best for them before they go back to school. This will help them deal with questions from their friends in a way that feels good to them.

If your child is struggling or doesn’t want to go to school

If your child makes excuses to skip school, it could mean they’re having a hard time going back. If your child is sad before or after school, or if they’re always sad on Sundays, they might be struggling with the change. Older kids and teens might not want to go to school because they look different or because they missed a lot of school and feel different from their friends. If your child doesn’t want to go back to school, talk to them about why.

Here are some things you can do:

• Ask your child to tell you what’s hard for them about school.
• Remind your child that staying home won’t fix things even if it seems like it might.
• Talk to teachers and the school counselor about how your child is feeling. They might have ideas to help.
• If your child says they’re sick and doesn’t want to go to school, it might help to call their cancer care team to find out if they should get checked out.

If the problem is how your child feels, schoolwork, or something else, the information below can help you find solutions.

Managing physical problems at school

Sometimes, cancer treatment can make it hard for kids to move around and do well in school like they used to. Schools might need to make special accommodations to help kids who had cancer treatment.

Here are some common problems and ways to handle them:

If your child is weak or tired

• They might need 2 sets of books, one for home and one for school.
• Ask the school if your child can skip certain activities that require a lot of energy.
• Your child might need rest periods or shorter school days at first.
• Teens might need lockers closer to their classrooms.
• Some kids might need more time for tests or easier assignments because they’re tired.

If your child has appetite or bathroom problems

• If your child’s mouth is dry because of treatment, they might need a water bottle.
• Kids who have bladder or bowel problems might need special passes to use the bathroom without asking.
• Kids who are too skinny might need more time to eat and extra snacks.

If your child has learning problems

Most kids do well in school after cancer treatment. But treatment can change how they learn and think.

• Watch for problems so they can be addressed early. Some problems might last for months, while others might last longer.
• Some treatments might make it hard for kids to focus, remember things, or finish tasks. This is called chemo brain.
• Talk to teachers and the cancer care team if you notice problems. They can help your child get support.
• Ask your child if they’re having trouble with friends. That can affect schoolwork too.
• If your child’s treatment might cause problems at school, ask the cancer care team for help.
• Ask the cancer care team or school for tests to understand what problems your child is having. This can help create a plan to support your child. You and your child might be able to get help through a 504 plan or IEP.

Individualized Education Programs (IEPs) and 504 plans

Individualized Education Programs (IEPs) and 504 plans help kids with special needs get the help they need to learn. They are part of laws that apply to all public schools.

What is an IEP?

IEPs are for kids who need special help with school. They’re for children ages 3 to 21 and they end when the child graduates high school. They fall under the Individuals with Disabilities Education Act (IDEA).

To qualify for an IEP, a child must have a covered disability that affects their learning. Sometimes, cancer treatment can cause problems that count as a covered disability.

If your child is eligible for an IEP, an IEP team will work with you to create a special education plan and learning goals for the year. This plan will include any accommodations your child needs to help them succeed.

What is a 504 plan?

504 plans help people with disabilities get treated fairly. They apply to schools, employers, and places that receive government funding.

A 504 plan in a school makes sure that kids can learn without obstacles getting in the way. It’s different from an IEP and doesn’t have a specific plan or goals. Any child with a disability can get a 504 plan. A child who doesn’t qualify for an IEP may still be able to get a 504 plan.

Like IEPs, 504 plans provide accommodations that are specific to the child. For example, a child may need a quiet environment when taking exams.

What accommodations might be made to help my child?

Accommodations might be part of an IEP or a 504 plan. They are meant to change how the child gets their schoolwork done but they don’t change what the child will learn. Accommodations might include:

• Technology such as audiobooks and videos
• A certain class seat location or a quiet testing area
• Extra time for schoolwork
• Breaks
• Tools to help with sensory problems
• Alarms for time management

How do I know if my child needs an IEP or a 504 plan?

If your child can do schoolwork with some help, a 504 plan might be right for you. They’ll have the same goals as other kids.

If your child can’t do schoolwork even with help, an IEP might be better. Goals are based on your child’s evaluation results and the team’s decisions.

More information on IEPs and 504 plans

• The National Center for Learning Disabilities helps people with learning and attention issues through advocacy, research, scholarships, and community partnerships.
• Understood is a non-profit that provides information and resources about education for people who think or learn differently.
• Find your state’s department of education for more information.