A school-aged child diagnosed with leukemia is usually admitted to a children’s hospital (sometimes far from home) and will not be able to return to school for weeks or months. To prevent your child from being dropped from school rolls due to nonattendance, you need to notify the school in writing about your child’s medical situation. This notification allows planning to begin for your child to return to school or to receive hospital- or home-based schooling when able. Following is a sample letter, reprinted with permission from Sharon Grandinette, Exceptional Education Services.

Your child may want to send a letter to her class, which can help the teacher begin one of many discussions about why the classmate isn’t in school. The letter below was sent by 7-year-old Madison to her classmates. It was handwritten and decorated with beautiful red hearts.

Treatments for leukemia (e.g., chemotherapy, radiation, and stem cell transplantation) may cause changes in children’s behavior and ability to function in school, both during and after treatment. Thus, the study team meeting can lay the foundation for any needed support or accommodations.

At the meeting, you may wish to distribute booklets about how to help children with cancer in the classroom, as well as age-appropriate information that can be shared with the classmates. You can create a communicable disease notification strategy, if needed, and do your best to build a rapport with the entire school staff. Take this chance to express appreciation for the school’s help and your hopes for a close collaboration in the future to create a supportive climate for your child.

My daughter Julia was diagnosed with T-cell ALL when she was in second grade. We had her tutored at home by a district-sponsored, certified teacher and it was a great experience. She received the tutoring right through the end of the school year. (She started around mid-January with the tutoring, and it continued through June.) The teacher we had was fabulous, and Julia stayed caught up with (and even ahead of) her class. Our school district has everything in place for kids who, for medical reasons, need to be tutored at home. I think it was much less stressful than trying to get into school for a day or two at a time and not being able to keep track of homework. Plus, we didn’t have to worry about all the germs floating around. When Julia went back to school last year, she had no adjustment problems and did very well.

At the meeting, the school will assign a person (e.g., child’s teacher, guidance counselor, special education expert) to communicate with a designated person at the hospital (e.g., school liaison).

I still feel unbelievable gratitude when I think of the school principal and my daughter’s kindergarten teacher that first year. The principal’s eyes filled with tears when I told her what was happening, and she said, “You tell us what you need and I’ll move the earth to get it for you.” She hand-picked a wonderful teacher for her, made sure that an illness notification plan was in place, and kept in touch with me for feedback. She recently retired, and I sent her a glowing letter, which I copied to the school superintendent and school board. Words can’t express how wonderful they were.

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We had a very difficult time with the school. They viewed my daughter as another problem they had to deal with. Her first grade teacher was impatient with her, at one point telling her she was too slow getting ready for the bus home, and closing her in the room by herself. The door was too heavy for her to open (she was weak from chemo and radiation), and another parent heard her crying, got her out, and put her on the bus. We withdrew her from that school and homeschooled her.

The designated liaisons will work to keep information flowing between the hospital and school and will help pave the way for a successful school reentry for your child. The liaison from the hospital should encourage questions and address any concerns the school staff have about having a seriously ill child in the school. The hospital liaison may also help school staff understand how the child’s illness might affect school attendance or performance. Privacy laws prohibit liaisons from communicating unless parents sign a release form authorizing the school and hospital to share information. These forms are available at schools and hospitals.

Robby was diagnosed in January of his kindergarten year. He returned to kindergarten the same day he got out of the hospital. His teacher was wonderful. She moved the desks around in the classroom so that if Robby got tired, she would go get his cot and put it in the center of the classroom so he could lay down and still listen. If a child had a cold, she would move him/her to the other side of the classroom. The kids washed their hands at least four times a day. The teacher’s aide would sit in the rocking chair holding Robby if he was sad (prednisone days). Also on prednisone days, Robby was allowed to have his lunch box, which weighed at least 10 pounds a day, at his desk, and he could eat all day.

In the months and years after diagnosis, try to maintain an open and amicable relationship with the school in the hope that your child, who may be emotionally or physically fragile, continues to be welcomed and nurtured.