Brothers and sisters are shaken to the very core by cancer in the family. Parents, the leaders of the family clan, sometimes have no time, and little energy, to focus on the siblings. During this major crisis, siblings sometimes feel they have no one to turn to for help. They may feel concerned, worried, fearful, guilty, angry, sad, abandoned, or other powerful emotions. If you understand that these ever-changing emotions are normal, you will be better able to help your children talk about and cope with their strong feelings.

Although the months or years of treatment are emotionally potent for every member of the family, research has shown that most siblings have good psychological outcomes, particularly if they have been assured they are valuable, contributing members of the family whose thoughts and feelings matter. In the years afterwards, siblings frequently report the experience as life-changing in many positive ways. Following are descriptions and stories about the emotions felt by siblings.

Concern for sick brother or sister

Children really worry about their sick brother or sister. It is difficult for them to watch someone they love be hurt by needles and sickened by medicines. It is scary to see a brother or sister lose weight and go bald. It is hard to feel so healthy and energetic when the brother or sister has to stay indoors because of weakness or low blood counts. The siblings may be old enough to know that death is a possibility. There are plenty of reasons for concern.

Christine’s younger sister has really developed the nurturing side of her personality as a result of the leukemia. She frequently puts her arm around her sister, comforts her with soothing words or touches, and seems to feel her pain.

• • • • •.

I’m the mother of three children. Logan was 19 months old when diagnosed. It was very hard on all of us. Kathryn (5 ½ at the time of diagnosis) felt that she had to take so much on herself. She was there with us the entire time Logan was in the hospital. She had a cot right next to Logan’s bed, and only she and I were the ones who could take care of “our Logan.”

She used to love to visit the other kids on the hospital floor and entertain them. She hated to go home. She would get so involved with the other kids and didn’t want to leave them. She actually got very close to two little girls who lost the battle, so here she was at 6, dealing with the loss of two friends.

Fear and worry

It is extremely common for young siblings of children with cancer to think the disease is contagious—that they can “catch it.” Many also worry that one or both parents may get cancer. The diagnosis of cancer changes children’s view that the world is a safe place. They may feel vulnerable and afraid. Many siblings worry that their brother or sister may get sicker or may die.

When my infant daughter was diagnosed, I had two older daughters—5 and 3 years old. They are having a hard time because my husband and I have been gone most of the last three months staying in the hospital. Our oldest is very worried. She’s been talking to her counselor at school once a week, and she’s expressed that that she was worried that her sister is going to die. We think she understands our explanations that her sister needs to stay in the hospital to get medicine to make the cancer go away. It’s been hard.

Fears of things other than cancer may emerge: fear of being hit by a car, fear of dogs, fear of strangers. Many fears can be quieted by accurate and age-appropriate explanations from parents or medical staff.

My 3-year-old daughter vacillated between fear of catching cancer (“I don’t ever want those pokes”) to wishing she was ill so that she would get the gifts and attention (“I want to get sick and go to the hospital with Mommy”). She developed many fears and had frequent nightmares. We did lots of medical play, which seemed to help her. I let her direct the action, using puppets or dolls, and I discovered that she thought there was lots of violence during her sister’s treatments. She continues to ask questions, and we are still explaining things to her, four years later.

Jealousy

Despite feeling concern for the ill brother or sister, almost all siblings also feel jealous. Presents and cards flood in for the sick child. Mom and Dad stay at the hospital with the ill sibling, and most conversations revolve around that child. When the siblings go out to play, the neighbors ask about the sick child. Even at school, the teachers are concerned about their ill sibling. Is it any wonder brothers and sisters feel jealous?

The siblings’ lives are in turmoil and they sometimes feel a need to blame someone. It’s natural for them to feel it’s the sick sibling’s fault that family life has changed, or to feel upset with the sibling for taking all the adults’ attention, or to feel angry and blame the parents for daily life being disrupted. Some siblings even develop symptoms of illness in an attempt to regain attention from the parents.

Our 9-year-old son seemed to be dealing with things so well until one evening as I was tucking him in, he confided that he had tried to break his leg at school by jumping out of the swing. He began to cry and told me he doesn’t want his brother to be sick anymore; that he needs some attention, too. As parents, we were always so concerned with our sick child that we didn’t realize how much our healthy child was suffering.

Guilt

Young children are egocentric; they are not yet able to see the world from any viewpoint but their own. Some children believe they caused their brother or sister to get cancer. They may have said in anger, “I hope you get sick and die,” and then their sibling got sick. Any such fears should be dispelled right after diagnosis. Children need to be told, many times, that cancer just happens and no one in the family caused it. They need to understand that no one can make something happen just by thinking or talking about it.

Many siblings feel guilt about their normal responses to cancer, such as anger and jealousy. They think, “How can I feel this way about my brother when he’s so sick?” Assure them that the many conflicting feelings they are having are normal and expected.

It is also common for some children (and parents) to feel guilt about being healthy. It is important for parents to frequently remind their healthy children that there is no connection between their health and their sibling’s illness and that no one, including the sick brother or sister, wants them to feel bad about being healthy.

Abandonment

If parental attention revolves around the sick child, siblings may feel isolated and resentful. Even when parents make a conscious effort not to be so preoccupied with the ill child, siblings sometimes still feel they aren’t getting their fair share of attention and may feel rejected or abandoned.

Months after his 4-year-old sister’s treatment ended, my 6-year-old son confided to his grandmother that his parents loved her more than him. He still has never told his father or me, but he does sometimes ask if his sister is going to die. When I say no, he looks sort of disappointed.

Sometimes it’s necessary to have the siblings stay with relatives, friends, or babysitters. Parents may have to miss activities they would otherwise have attended, such as soccer games or school events. Vacation plans may be scrapped. The reasons may seem obvious to parents, but the siblings may interpret these changes as evidence that they are not as well-loved as the sick child. Parents should explain in detail the reasons for any alterations in routines and try to find solutions that work for everyone in the family.

When Jeremy was very sick and hospitalized, we sent his older brother Jason to his grandparents for long periods of time. We thought that he understood the reasons, but a year after Jeremy finished treatment, Jason (9 years old) said, “Of course, I know that you love Jeremy more than me anyway. You were always sending me away so that you could spend time with him.” It just broke my heart that every time he made that long drive over the mountains with his grandparents, he was thinking that he was being sent away.

Sadness

Siblings have many very good reasons to be sad. They miss their parents and the time they used to spend with them. They miss the life they used to have—the one they were comfortable with. They miss their sick sibling. They worry that he or she may die. Some children show their sadness by crying often; others withdraw and become depressed. Sometimes children confide in relatives or friends that they think their parents don’t love them anymore.

We always, always explained everything that was happening to Brian’s older brother Zack (8 years old). He never asked questions, but always listened intently. He would say, “Okay. I understand. Everything’s all right.” We tried to get him to talk about it, but through all these years, he just never has. So we just kept explaining things at a level that he could understand, and he has done very well through the whole ordeal. The times that he seemed sad, we would take him out of school and let him stay at the Ronald McDonald House for a few days, and that seemed to help him.

Anger

Children’s lives are disrupted by the diagnosis of a sister or brother with cancer, and siblings often feel very angry. Questions such as “Why did this happen to us?” or “Why can’t things be the way they used to be?” are common. Children’s anger may be directed at their sick sibling, their parents, relatives, friends, or doctors.

Children’s anger may have a variety of causes. They may resent being left with babysitters so often or having extra responsibilities at home, or they may notice that the sick child is not always held to the same standards of behavior as the other children. Because each member of the family may have frayed nerves, explosions of temper can occur.

As we were driving home from school one day, Annie was talking, and I was only half listening. All of a sudden I realized that she was yelling at me. She screamed, “See, this is what I mean. You never listen, your mind is always on Preston.” I pulled the car over, stopped, and said, “You’re right. I was thinking about Preston.” I told her that from now on I would try to give her my full attention. I realized that I would really have to make an effort to focus on what she was saying and not be so distracted. This conversation helped to clear the air for a while. I tried to take her out frequently for coffee or ice cream to just sit, listen, and concentrate on what she was saying.

Worry about what happens at the hospital

Children have vivid imaginations, and when they are fueled by disrupted households and whispered conversations between teary parents, children can imagine truly horrible things. Seeing how their ill sibling looks upon returning from a hospital stay can reinforce their fears that awful things happen at the clinic or hospital. Or the siblings may think they are missing some grand parties when they see their sister or brother and parent come home from the hospital with presents and balloons.

My son is only in kindergarten. He has separation anxiety worse than a 6 month old. He doesn’t want to go to bed alone. The last time Karissa had the flu, I thought he was going to die from worrying so much. He cried himself to sleep every night and woke up crying. He was so worried. He hasn’t gotten much better since she has started feeling better, either. He doesn’t even want to go near the hospital with his sister.

Age-appropriate explanations can help children be more realistic about what they think happens at the hospital, but nothing is as powerful as a visit. Of course the effectiveness of a visit depends on your child’s age and temperament, but many parents say that bringing the siblings along helps everyone. The sibling gains an accurate understanding of hospital procedures, the sick child is comforted by the presence of the sibling(s), and the parents get to spend more time with all the children.

Alissa’s older brother Nicholas is her best friend. We are at the hospital for appointments and therapy three nights a week, every week. Nicholas helps Alissa with “hospital homework” and he also helps with her therapy. Nicholas is doing great at school. We include him in everything.

Another way to help a worried sibling is to read age-appropriate books together. Many children’s hospitals have coloring books for preschoolers that explain hospital procedures with pictures and clear language. School-age children may benefit from reading more detailed books with a parent (see Appendix C, Books, Websites, and Support Groups). Adolescents might be helped by watching videos, reading books, or joining a sibling support group.

Several parents suggested that another way to reduce siblings’ worries is to allow even the youngest children to help the family in some way. When children have clear explanations about the situation and concrete jobs to do that will benefit the family, they tend to rise to the occasion. Make them feel they are a necessary and integral part of the family’s effort to face cancer together.

Concern about parents

Exhausted parents are sometimes not aware of the strong feelings their healthy children are experiencing. They may assume children understand they are loved and that they would be getting the same attention if they were the one who had cancer. Siblings frequently do not share their powerful feelings of anger, jealousy, or worry because they love their parents and do not want to place more burdens on them. It is all too common to hear siblings say, “I have to be the strong one. I don’t want to cause my parents any more pain.” But burdens are lighter if shared. Parents can help themselves and the siblings by talking about their own feelings and encouraging children to share their feelings, especially the difficult ones. Try to listen without becoming defensive, and use those moments as a chance to grow together and strengthen each other.

Ethan had been sharing a room with his eldest brother, Jake, prior to his diagnosis, but after the first surgery either my spouse or I slept in the room with Ethan. Ethan gradually improved over the first couple of months to the point where he was more independently mobile and Jake said he wanted to sleep in Ethan’s room again so that my spouse and I could go back to sleeping together. Jake has always been calm, thoughtful, and responsible, and he really seemed to handle Ethan’s illness the best of the boys. When he and I participated in a survey to evaluate Post Traumatic Stress Disorder (PTSD) in siblings, I found out that he was much more distressed than I had imagined. We took some time to talk about how the stress affected each of us, and I was really grateful that we had agreed to do the research project.