Siblings During Long Childhood Cancer Treatment

NCI keeps a page written for siblings themselves. It names the feelings plainly, which matters, because most siblings assume theirs are shameful.

• Shock. "You may feel shocked and surprised to learn that your brother or sister has cancer."
• Fear. "It's common to feel afraid. Some fears may be real, while others may be based on things that won't happen."
• Guilt. "Some siblings feel guilty about taking a break or hanging out with friends."
• Anger. "Anger often covers up other emotions that are harder to show such as sadness, fear, or shame."
• Being pushed aside. "Your family's focus may change."
• Loneliness. "When you feel isolated, let your family or trusted loved ones know."
• Embarrassment. "It's normal to feel uncomfortable if people stare or make remarks."

NCI's guide for teens puts the same feelings in siblings' own words. "My world is falling apart. I'm afraid that my brother or sister might die." Guilt arrives "when I laugh and have fun." Anger sounds like "I am mad that my brother or sister is sick."

On the guilt, NCI answers directly. Feeling bad about enjoying yourself shows how much you care. It is both okay and important to do things that make you happy.

The right move is different at 4, at 9, and at 15. Age is doing more work here than personality is.

Toddlers and preschoolers

NCI's guidance for very young children notes that they "understand things they can see and touch" and that "they fear being away from their parents."

A three-year-old sibling is usually not frightened of cancer. They are frightened that you disappeared. So the useful things are concrete, not explanatory. Say who will be home tonight. Say when you will be back, in terms they can measure, such as after two sleeps. Keep the same person doing the same routines wherever you can.

School age, roughly 6 to 12

NCI notes that school-aged children "understand that medicines and treatment help them get better." At this age a child can hold real information, and they will ask many questions.

Two sentences need saying out loud, early. NCI's advice to parents who have cancer is to tell children that "Nothing your child did, thought, or said caused you to get cancer." Children blame themselves the same way when the person who is sick is a brother or sister. Say the equivalent sentence to them directly.

The second is NCI's: "It's okay to be upset, angry, or scared."

NCI also says children in a family facing cancer "should still go to school and take part in sports and other fun activities." That is not a nice extra. It is the intervention.

Teenagers

NCI wrote a whole guide for this age, meant for the teenager to read, not the parent. Give it to them rather than summarizing it.

Teens tend to focus on how the illness changes their own life: friendships, appearance, activities. That is developmentally normal and not selfishness.

NCI's sibling page notes that siblings report falling behind at school.

The teen guide gives them a script that protects their dignity: "Let your teachers know what's happening at home, without using it as an excuse." It also tells them to talk to a school counselor "if you are falling behind."

On the parent side, NCI's advice is to "Keep things as normal as you can," including arranging for siblings to take part in school activities and events.

Tell the school something. It does not have to be everything. A teacher who knows there is a serious illness at home will read a missed assignment completely differently.

The teen guide names the exact thing that happens. "My friends don't come over anymore. My friends don't seem to know what to say to me anymore."

Friends usually go quiet because they are afraid of saying the wrong thing, not because they stopped caring. The guide's suggestion is to go first and ask them directly whether there is anything they want to talk about or know.

The teen guide asks a run of questions worth reading slowly: "Are you doing more chores? Are you spending more time with relatives or friends? Are you home alone more? Are you asked to help make dinner or do the laundry? Are you looking after younger brothers or sisters more?"

NCI's sibling page adds a warning that parents should take seriously. It advises siblings against trying to be perfect in order to protect their parents.

That is the quiet risk in a long treatment. A sibling who becomes the easy child stops needing anything, and then stops being noticed. Easy is not the same as fine.

If the hospital is close, the teen guide suggests simple shared time: "You can read together, draw, play games, or sit and talk."

If treatment is far away, it suggests keeping contact going another way. "Talk on the phone. You can also send cards, letters, or pictures back and forth."

Sending something is a real contribution. A younger sibling who feels useless often just needs a job.

The teen guide gives practical mechanics. Find a private place. Ask your parents if they have a few minutes to talk.

And it advises against saving everything for one big conversation. Instead, "Have lots of small ones."

NCI's sibling page also encourages siblings to talk with their parents and suggest changes they think would help. Siblings are usually right about what would help. They just rarely get asked.

NCI's guidance for parents is short and specific.

• "Set aside some time every day, even if it's just a few minutes, to spend with your other children."
• "Keep things as normal as you can."
• Ask the treatment center this question, which comes from NCI's guide for parents: what programs and specialists do you have available to help parents and siblings cope?

A social worker or child-life specialist can help a child think through what they do and do not want to share with friends. NCI's parent guide says a social worker, child-life specialist or nurse can help a child handle stress and hard situations. For emotional problems that last or worsen, it says the health care team can give you names of psychologists or other mental health experts.

Ask what exists for siblings specifically. Many centers run sibling groups and sibling days, and nobody offers them unless you ask.

NCI's teen guide does not avoid this, and neither should you if a sibling is asking.

Where a sibling might die, the guide's advice to teens is: "Make the most of the time you have. Do special things as a family. At home, make time for your brother or sister. Call and visit as much as you can if they are in the hospital."

If a brother or sister dies, it says: "Your brother or sister will always be part of your life... The pain will lessen with time... Everyone grieves in his or her own way."

A sibling who asks a direct question has already thought about the answer. Vagueness does not protect them. It just leaves them alone with it.

• Call 911, or call or text 988, if a brother or sister says they want to die, or you think they are close to hurting themselves. MedlinePlus lists "talking about wanting to die" and "feeling empty, hopeless, trapped" among the warning signs, and says to dial 911 in an emergency. The 988 line is open at any hour.
• Ask the center's social worker or a child-life specialist the same day if a sibling's mood or behaviour has shifted sharply. NCI says these staff can help a child handle stress, and can point you to a psychologist or other mental health expert if problems last or get worse. They are there for the well child too, not only for the patient.
• Speak to the school counselor and the center's team within a day or two if a sibling is falling behind at school, sleeping badly, or has gone quiet and stopped asking for anything. Easy is not the same as fine.

• Support for Siblings When a Brother or Sister Has Cancer — National Cancer Institute
• When Your Brother or Sister Has Cancer: A Guide for Teens — National Cancer Institute
• Support for Families: Childhood Cancer — National Cancer Institute
• Children with Cancer: A Guide for Parents — National Cancer Institute
• Talking to Children about Cancer — National Cancer Institute
• Suicide and Suicidal Behavior — MedlinePlus