Childhood Cancer

Childhood Cancer

Keeping the school informed

A school-aged child diagnosed with cancer is usually admitted to a children’s hospital (sometimes far from home) and is no longer able to attend school. 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 receive hospital- or home-based schooling once he is able to resume his studies. If needed, enlist the assistance of a hospital social worker to write the letter and send to the school. Following is a sample letter, reprinted with permission from Sharon Grandinette, Exceptional Education Services.

Date

Dear [Name of Principal],

Our son, John Doe, [date of birth], a student at [name of school], was diagnosed with cancer in [month/year] and had surgery to remove the tumor. He is still hospitalized. He is unable to attend school at this time, and may undergo treatment with chemotherapy or radiation.

We are requesting that a Student Study Team meeting be scheduled with the school nurse in attendance. The purpose of the meeting is to discuss John’s current medical status and how it may affect his school attendance and functioning. John may require accommodations or special education services, and we would like to discuss those options at the meeting. Depending on John’s medical status, we may be able to attend the meeting in person, but if not, we request that it take place by phone.

Please send us the appropriate release forms so that we can authorize an exchange of information between the school and the medical/rehabilitation professionals treating John.

Sincerely,

[Parent/guardian name(s) and contact information]

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

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 formulate a communicable disease notification strategy, if necessary, and do your best to establish a rapport with the entire school staff. Take this opportunity 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 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 went 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. It was hard being home all those months, (I took a leave of absence from work) but we managed. Actually, I believe our relationship really deepened during the time home. I now have a closeness with Julia that is really special. When Julia went back to school last year, she had no adjustment problems and did very well.

At the meeting, the school will designate 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). To read about how St. Jude Children’s Research Hospital manages this process, visit www.stjude.org and enter the search term “School program.”

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.

Image

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. The principal and the teachers’ union supported the teacher. We pulled her out to homeschool 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.

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.