We encourage children to attend school or school events whenever they feel well enough and it is medically safe (as advised by the pediatric oncologist). The objective of this come-and-go-as-you-are-able policy is to keep children connected with their primary job: going to school. It is also a message of optimism: you can do this and you will be a long-term survivor of cancer. And, lastly, it is a message of belonging: all of your friends are here and this is where you belong, too.
School personnel should have regular and direct contact with the child’s parents. They should also have the name of an emergency contact person on the child’s oncology team to discuss any urgent needs the child may have.
The following issues require that school personnel notify parents immediately so they can be in touch with their child’s health care team:
- Fever > 101F.
- Exposure to chicken pox
- Active bleeding, including nosebleeds; bruising; pink, red or brown urine; red or black (“tarry”) stools; or dark brown (“coffee ground”) vomit.
- Central line problems, including pus, swelling or redness around the site. If there is a leak or break in the external tubing, the tubing should be clamped between the leak and the child. (This is a rare event during school.)
We encourage schools to relax certain rules for the child with cancer such as allowing the child to:
- Wear a hat, bandana, or scarf in class;
- Leave class to lie down or take a nap;
- Drink fluids in class;
- Make extra trips to the rest room, if possible without having to ask permission each time;
- Snack in class;
- Receive special consideration in PE class as needed;
- Stay indoors during recess (perhaps with a friend); and
- Move from classroom to classroom when the hallways are empty rather than being in crowds.
When treatment is less intense or has been completed, the child should follow the same rules as all the other children. Children and teens do not like to be different. No longer getting special privileges is a real sign of recovery!
The majority of siblings of children with cancer appear to cope well with the diagnosis and treatment of cancer in their brother or sister. Some siblings of children with cancer show their distress with changes in behavior including acting out, difficulty learning and concentrating that might be reflected in declining grades and less interest in activities or spending time with friends. Other siblings may show signs of withdrawal, sadness, or excessive worry. For all siblings, helping them to sustain activities they enjoy is often helpful (sports, Scouts), especially since parents may have less time to spend with the siblings and struggle with how they manage their time between home and the hospital.
The first few months after the diagnosis are a critical time for siblings when they tend to feel the new stresses more acutely. Other critical times are if a child relapses or requires a bone marrow transplant. Some siblings want someone to talk to about their concerns, especially about all the changes in their family. Other siblings do not want to talk about their own feelings or about their brother or sister’s cancer at all. Regardless of how well the sibling is coping, extra positive attention at school can be helpful. A teacher, school nurse, or school psychologist can reach out and offer the sibling a chance to just chat casually, not only about the child with cancer but, very importantly, about how the sibling is doing. Some siblings will gladly accept the added attention from an adult. However, older children and teens are likely to turn to friends, rather than adults, for support. The specific approach will depend on the sibling, but offering time and attention later – even if rebuffed the first time - demonstrates that you are serious about being available.
Some siblings serve as donors for a child’s stem cell transplant. Studies have shown that they have fears about the process and they may feel guilty after the procedure if the transplant is unsuccessful or is associated with complications. The older the donor, the more questions and concerns they have, but even kindergartners have worries and concerns. Helping them can be especially difficult since their understanding is limited. We urge parents to let the school know when a sibling is a donor because of the additional stress they are likely to feel if the child with cancer is not doing well.
Things you can do to support siblings:
- Help them to continue with school activities they previously enjoyed. Parents may have time limitations.
- Ask them how THEY are doing, not just how their sick brother or sister is.
- Look for opportunities to provide instrumental support including helping them negotiate transportation to soccer games, school dances, Scouts, or the bowling club.
- Watch for poorer grades, less spontaneity, incomplete homework, and weight loss or gain as potential signs of depression, anxiety, or exhaustion. They may need accommodations if they are spending long hours at the hospital or are responsible for cleaning, cooking, or grocery shopping while their parents are preoccupied at the hospital. Younger siblings may be suffering from separation anxiety; older siblings may be overloaded with adult responsibilities.
- If you are concerned about a sibling, bring your concerns to the child’s parents. They may be so preoccupied with supporting their child with cancer that they are unaware of problems their other children are having. In addition to the support they are fortunate to get from school, their oncology team can also provide information and counseling about how children’s cancer affects the entire family.
You might take a look at outside electronic resources such as SuperSibs www.supersibs.org/the-sib-spot/index.html.