The following are suggestions from several families about ways to help brothers and sisters cope.
• Make sure you explain the tumor and its treatment to the siblings in terms they understand. Create a climate of openness so they can ask questions and know they will get answers. If you don’t know the answer to a question, write it on your list to ask the doctor at the next appointment, or ask your child if he would like to go to the appointment with you and ask the question himself.
• Make sure all the children clearly understand that cancer is not contagious. They cannot catch it, nor can their ill brother or sister give it to anyone else. Impress upon them that nothing the parents or brothers and sisters did caused the cancer.
• Bring home a picture of the brother or sister in the hospital, and encourage the children to talk on the phone or send e-mails or text messages when their sibling is hospitalized.
My daughter was 18 months old when her 3-year-old sister was diagnosed. Each member of the family flew in to stay at the house for 2-week shifts, so she had a lot of caregivers. A friend of mine gave her a big key chain that held eight pictures. We put a picture of each member of the family (including pets) on her key chain, and she carried it around whenever we were away. It seemed to comfort her.
• Try to spend time individually with each sibling.
We began a tradition during chemotherapy that really helped each member of our family. Every Saturday each parent would take one child for a 2-hour special time. We scheduled it ahead of time to allow excitement and anticipation to grow. Each child picked what to do on their special day—such as going to the park, eating lunch at a restaurant, riding bikes. We tried to put aside our worries, have fun, and really listen.
• If people only comment about the sick child, try to bring the conversation back to include the sibling. For example, if someone exclaims, “Oh look how good Lisa looks,” you could say, “Yes, and Martha has a new haircut, too. Don’t you think she looks great?”
• Share your feelings about the illness and its impact on the family. Say, “I’m sad that I have to bring your sister to the hospital a lot. I miss you when I’m gone.” This allows the sibling an opportunity to tell you how she feels. Try to make the illness a family project by expressing how the family will stick together to beat it.
I never kept my feelings secret from Shawn’s two older brothers (5 and 7 years old). If I was scared, I talked about it. Once when we thought he was relapsing, my stomach was so knotted up that I could barely walk. Kevin said, “Mom, I’m really worried about Shawn.” I told him that I was, too, and then we both just hugged and cried together. They really opened up when we didn’t hide our feelings.
• Include siblings in decision-making, such as giving them choices about how extra chores will be divided up or devising a schedule for parent time with the healthy children.
We always gave the boys choices about where they would stay when Shawn had to be in the hospital. I felt like it gave them a sense of control to choose babysitters. They usually stayed at a close neighbor’s house where there were younger children. It allowed them to ride the same bus to school and play with their neighborhood friends. Their lives were not too disrupted. They also really pitched in and helped with the younger kids. I think it helped them to help others.
Sometimes I think that my mom does not treat us equally. For example, if I left my snack garbage on the floor I would not get a snack the next night but Zach would get a snack if he left his garbage on the floor. I know he cannot walk but he could ask someone to take it out for him or he could say, “I need to take my garbage out so can somebody help me walk out so I can throw my garbage away.”
• Allow siblings to be involved in the medical aspects of their brother or sister’s illness, if they want to be. Often the reality of clinic visits and overnight stays is easier than what siblings imagine. Many siblings are a true comfort when they hold their brother or sister’s hand during procedures.
Just yesterday, Spencer out of the blue said “Mom, I wish I could have donated my marrow to Travis.” And he’s 5! He also donated money to plant a tree in Israel today at Sunday school and asked us to write that it was “In honor of God and my brother, Travis.” Oh man, we can never forget how this experience is seared in the memory of our children who don’t have cancer. I am convinced that for Spencer, too, we will be seeing effects of this entire experience in many ways, long into the future.
• Give lots of hugs and kisses.
We assumed everything was fine with Erin because she had her grandma, who adored her, staying with her. We made a conscious decision to spend lots of time with her and include her in everything. But we realized later that she felt very left out. My advice is to give triple the affection that you think they need, including lots of physical affection such as hugs and kisses. For years, Erin felt jealous. She thought her brother got more of everything: material things, time with parents, opportunities to do things she was not allowed to do. She finally worked it out while she was in college.
• Be sure to alert teachers of siblings about the tremendous stress at home. Many children respond to the worries about cancer by developing behavior or academic problems at school. Teachers should be vigilant for the warning signals and provide extra support or tutoring for the stressed child or teen. Continue to communicate frequently with the teachers of the siblings to make sure you are aware of any developing problems.
• Expect your other children to have some behavior problems as part of living with cancer in the family. This is a normal response.
When my 4-year-old healthy child screams and sobs over a minor skinned knee, she gets as much sympathy as my child with cancer does when having her port accessed. I put a bandage on the knee, rock her, sing a song, and get her an ice pack. The injuries are not equal, but the needs of each child are. They both need to be loved and cared for; they both need to know that mom will help, regardless of the severity of the problem. I even let her use EMLA® for routine shots. My pediatrician laughs at me, but I just tell him, “Sibs need perks, too.”
When Matt was in treatment and his older brother Joey was 5, we knew Joey needed some support, too. He would hide behind the couch with his blanket and suck his thumb when home health nurses, equipment company personnel, or respiratory therapists came to our home. We were fortunate that a reputable counselor was near our home and, under our challenging and chaotic circumstances, we could take him for a few sessions without adding further commotion to our life. The support gave Joey the benefit of knowing he had a helper, too, and that he felt cared for as much as his brother did.
• The child with cancer receives many toys and gifts, which can result in hurt feelings or jealousy in the siblings. Provide gifts and tokens of appreciation to the siblings for helping out during hard times, and encourage your sick child to share.
My daughter Jacqueline is 7 years old. We have three other children, ages 14, 8 ½, and 3. We found (through trial and error) that letting them know as much as they were able to handle, and making sure they felt comfortable asking any questions they might have, helped a great deal. We also made sure we called them two or three times a day from the hospital, and talked to them about how THEIR day was. We let them come to the hospital any time they wanted, after checking that it was okay with the docs. The second time around, we made sure that anyone coming to visit, or sending her something through the mail, either brought something small for the other three kids, or didn’t bring anything at all. We also kept a small stock of wrapped presents for those who didn’t remember our rule.
• Encourage a close relationship between an adult relative or neighbor and your other children. Having a “someone special” when the parents are frequently absent can help your child feel cared for and loved.
We tried very hard to attend to the feelings of Ethan’s siblings ourselves, but we realized early on that we were going to need help. We have a friend who is a children’s librarian. She and her husband took the boys out every week and spent the evening with them. The kids picked out books at the library with her help and input, talked about the things they were doing at school, what was going on in their lives, got an ice cream, and were made to feel wanted and special. When Ethan had to go to the hospital for chemotherapy, the children’s music teacher would have a sleep over for the boys at her house. She made them a favorite meal, rented a movie, made popcorn, and had a pajama party at her house so that they felt there was something special for them.
• You can also take advantage of any workshops, support groups, or camps for siblings. These can be of tremendous value for siblings, providing fun and friendships with others who truly understand their feelings.
Table of ContentsAll Guides
- 1. Diagnosis
- 2. Bone Sarcomas
- 3. Liver Cancers
- 4. Neuroblastoma
- 5. Retinoblastoma
- 6. Soft Tissue Sarcomas
- 7. Kidney Tumors
- 8. Telling Your Child and Others
- 9. Choosing a Treatment
- 10. Coping with Procedures
- 11. Forming a Partnership with the Medical Team
- 12. Hospitalization
- 13. Venous Catheters
- 14. Surgery
- 15. Chemotherapy
- 16. Common Side Effects of Treatment
- 17. Radiation Therapy
- 18. Stem Cell Transplantation
- 19. Siblings
- 20. Family and Friends
- 21. Communication and Behavior
- 22. School
- 23. Sources of Support
- 24. Nutrition
- 25. Medical and Financial Record-keeping
- 26. End of Treatment and Beyond
- 27. Recurrence
- 28. Death and Bereavement
- Appendix A. Blood Tests and What They Mean
- Appendix B. Resource Organizations
- Appendix C. Books, Websites, and Support Groups