Childhood Cancer

Childhood Brain and Spinal Cord Tumors

Emotional responses of the siblings

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 recognize these ever-changing emotions as normal, you will be better able to help your children talk about and cope with their strong feelings.

Although the years of treatment are emotionally potent for every member of the family, research has shown that siblings have good psychological outcomes, particularly if they have been assured that they are valuable, contributing members of the family whose thoughts and feelings matter. 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.

My 10-year-old son Travis has had two brain bleeds since treatment for his tumor. It’s hard for Travis’ little brother Gregory. Here he had a big brother who took care of him and nurtured him, and now his brother can’t talk, can’t walk, and is totally disabled. The other night, I found Gregory sitting on the stairs crying. I asked him what was wrong, and he said, “I want all of us to watch TV together. I miss my brother watching TV with me.”

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Fear and worry

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 that lost the battle, so here she was at 6, dealing with the loss of two friends.

It is extremely common for young siblings of children with cancer to think that 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 feel vulnerable, and they are afraid. Many siblings worry that their brother or sister may get sicker or may die.

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, 4 years later.

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Jealousy

It’s almost midnight, which means that it will be exactly 36 hours before my sister Kylie goes for her first MRI after radiation. I don’t know what to expect, but I would really love to hear some positive words coming from the oncologist’s mouth when we meet up with him to receive the results. I can hardly sleep because, although I am always hoping for a miracle, I constantly worry, to the extent of having nightmares, about hearing something that I don’t want to hear.

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 sick child, and most conversations revolve around the sick child. When the siblings go out to play, the neighbors ask about the sick child. At school, teachers are concerned about the sick child. 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 think that if their brother or sister didn’t get sick, life would be back to normal. Some siblings develop symptoms of illness in an attempt to regain attention from the parents.

Guilt

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.

Young children are egocentric; they are not yet able to see the world from any viewpoint but their own. Some children believe that 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 sister got sick. This notion 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 experiencing are normal and expected. As a parent, share some of your conflicting feelings (such as anger at the behavior of a child due to a treatment side effect, guilt about being angry).

It is also common for some children (and parents) to feel guilt about being healthy. It is important for parents to provide many opportunities to 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 feeling good.

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 perceive that they are not getting their fair share of attention and may feel rejected or abandoned.

Jay had undergone many surgeries as a child, besides treatment for an anaplastic ependymoma. On a well-child visit, the doctor said he was concerned about his left eye turning in, and surgery for stabismus repair was recommended. This noncancer-related surgery unearthed memories. Jealous feelings from Jay’s numerous surgeries, from the cancer days, resurfaced in our 15-year-old daughter, Vanessa. “It’s not fair, when Jay has surgery, nobody does anything special for me.” Her anger is wholly that of the 10-year-old girl she was when her brother suddenly developed a brain tumor.

Sometimes it is necessary to have the siblings stay with relatives, friends, or babysitters. Parents may have to miss activities, such as soccer games or school events, they would otherwise have attended. 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, solicit feelings about the changes from the siblings, and try to find solutions that work for everyone in the family.

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.

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.

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.

Anger

Children’s anger may have a variety of causes. They may resent being left with babysitters so often or having additional responsibilities at home, or they may notice that the sick child isn’t 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.

Worry about what happens at the hospital

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.

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 sibling 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 parent gets 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 on 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 books with a parent (see Appendix C, Books and Websites). 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. As long as 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

My younger kids have never known 11-year-old Zach as normal. He had his first surgery at 5 years old; Emily was 3 and Sarah was barely 1. Emily helped Zach go through 3 months of inpatient rehabilitation, when he relearned how to walk, talk, chew, swallow, etc. Zach having a brain tumor is all they know.

All Zach’s life, they treated him normally. No one ever let him win at games or anything (although I tried to make them). When we found out about the relapse, something got back to Emily in third grade. She got off the bus one day and asked if Zach was dying. I was shocked! I told her that his tumor was back but we were taking him to the best brain tumor doctor and we would do everything we could so he wouldn’t die. That seemed to totally satisfy her.

There was only one time that I remember Emily’s and Sarah’s teachers both telling me at parent conferences that the girls had been chatting a lot and not listening much. At the time, we were going through more surgery with Zach, so I think that is why.

Lauren is 4. This past summer, Zach took horseback riding for physical therapy. It was great! The girls would take turns coming to watch. Well, one day, Lauren was watching and she picked out this beautiful horse and said, “When I have my brain tumor, I’m going to ride that horse.” Oh my gosh! Can you imagine? It’s just so normal to them.

As far as I can tell, none of them have issues with embarrassment over Zach or anything like that. Often they think he is lucky because he can ride in the wheelchair (and they have to walk) or he was lucky because he got to ride horses. They all have a deep faith and pray a lot for Zach and other kids with brain tumors.

They also seem to reach out more to others. The oldest two belong to Chemo Angels where they volunteer to send out small cards or packages twice a week to a child with cancer.

Exhausted parents are sometimes not aware of the strong feelings of their healthy children. 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 additional 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 acknowledging their own conflicting feelings and encouraging children to share their feelings, especially the difficult ones. Try to listen without becoming defensive and use those moments as an opportunity to grow together and strengthen each other.

Immediately post-surgery Ethan was mute and paralyzed on his right side. He had been sharing a room with his eldest brother, Jake, prior to his diagnosis but because Ethan needed help going to the bathroom and was so non-communicative, 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.