Before your child returns to school, you will need to meet with school staff and administrators (the principal, your child’s teachers, the school nurse and others who will be working with your child) in order to explain any special needs or supervision your child may require while at school.
The school’s major concern will be what to do if your child has an “event,” a medical issue like a catheter becoming dislodged, nausea and vomiting, fainting or passing out. Whom do they call? What immediate measures should they be prepared to take? How likely is any specific event to occur at all? We suggest that parents provide school personnel with emergency contact information for their child’s oncology team in case any urgent medical needs arise. Schools should also be informed that they should immediately notify parents and/or a child’s healthcare team for the following issues:
- A fever of greater than 101F.
- Exposure to chickenpox.
- Active bleeding that includes nosebleeds, bruising, pink, red or brown urine, red or black “tarry” stools, or “coffee ground” vomit.
- Central line problems, which include any pus, swelling or redness around the site. If you notice leaking or a break in the external tubing, clamp the tubing between the leak and the child.
Below is a list of other important topics you will want to discuss with the school.
- Staff will need to be made aware of the physical and psychological challenges that children with cancer can face, including hair loss, decreased energy, and increased risk for bruising and nosebleeds. Some temporary changes include weight gain or loss, mood swings, facial fullness, problems with coordination, difficulties with fine and gross motor control, muscle weakness and body marks resembling tattoos, which identify sites of radiation. The child may also have a central line which will be closed off and protected and should be covered by clothing when the child is dressed.
- Many children undergoing cancer treatment become fatigued easily. Your child’s ability to participate in activities may be limited, although we recommend allowing your child to do as much as he or she feels able to do. The fatigue may be severe enough that naps during school time or attending for only half days is necessary. At times, the fatigue may also make it difficult for your child to complete assignments. You should ask teachers to consider allowing extra time on those occasions when your child is especially tired. However, teachers should still have as high expectations for your child as for any student in the classroom.
- Some medications, such as steroids, can make children more energetic and challenging to handle. Teachers should be aware of your child’s medication schedule, particularly when drugs that might alter your child’s mood are being used. At the same time, you should let teachers know you expect your child to be respectful and follow the same rules as the other children in the classroom. Ask to be notified if your child is not able to meet these expectations.
- While your child is receiving treatment, none of your children should be exposed to chicken pox or measles. If someone in any of your children’s class has either of these illnesses, a letter should be sent to parents reminding them to keep their sick children at home. This is standard practice in some school districts whether a child in the classroom has cancer or not, but it is wise to check to be sure that this will be done especially in your child’s case.
- Just as teachers already do with their classes, children in the classroom should be reminded to wash their hands regularly and not to share food or water bottles with one another in order to minimize transmission of illnesses.
- Discuss any particular issues related to taking medications, needing to eat more frequently or on a schedule, or the likelihood of needing increased bathroom breaks.
- Ask teachers to include your child in all activities, regardless of whether or not your child misses a class or even a whole day of school. If there is a field trip coming up, ask the teacher to let you know far enough in advance that you can make plans to include your child. If the class works on a group project, ask the teacher to assign your child to a group, even if your child is not present when assignments are made. When calling attendance, ask the teacher to read your child’s name, even when the teacher knows your child will be absent. All of these actions by the teacher show that your child is part of the class despite frequent or prolonged absences.
You should also talk with the school about “accommodations,” or changes in certain rules that make it easier for your child to remain in school and do well. Common accommodations include:
- Attending half days
- Having extra time to move from room to room when classes change
- Being able to go to the nurse’s office or bathroom without having to ask permission each time
- Being able to use the elevator
- Being excused from physical education or recess
- Permission to wear a hat or scarf if your child has lost hair
- Providing an extra set of textbooks that can remain at home so they do not need to be carried back and forth and are available if your child cannot attend school
In most schools, the principal or other administrators can approve these simple changes in routine. Occasionally, schools will request a physician’s recommendation. Less common accommodations include allowing extra time to take a test, taking a test in a separate room to minimize distraction, or having someone read the test to your child. These kinds of changes often require that the school develop a 504 Plan with you and your child’s teachers.