Helping siblings cope

The following are suggestions from several families about ways to help brothers and sisters cope.

• Make sure that you explain leukemia and its treatment to the siblings in terms that they understand. Create a climate of openness, so that they can ask questions and know that 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.

We drew a lot of pictures of red cells, white cells, and platelets. We showed each doing its job: red cells carrying oxygen around, white cells gobbling up cold germs as well as leukemia blasts, and platelets clumping up to form scabs. Drawing opened the floodgates of questions, and I was always amazed at how each child understood some things so clearly, and really was confused and frightened by other things.

• Make sure that all the children clearly understand that cancer is not contagious. They cannot catch it, nor can their ill brother 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 carry a tape recorder back and forth to relay songs and messages. Encourage the children to talk on the phone or email messages when your child is in the hospital.

• It is very hard for mothers and babies or toddlers to be separated. Some families leave out family photo albums for the caregiver to show the toddler whenever she gets sad.

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 two-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 two-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 on 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 an attractive new haircut, too. Don't you like it?"

• 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 is feeling. 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 choices on how extra chores will be done 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 baby-sitters. 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.

• Allow siblings to be involved in the medical aspects of their brothers illness, if they wish it. 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 brothers hand during spinal taps or bone marrows.

Just yesterday, Spencer (who screamed and shrieked at the blood draw for the BMT typing, and didn't match) 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.

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," not pathological, 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 leukemia does during a bone marrow aspiration. 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 the sibling use EMLA for routine shots. My pediatrician laughs at me, but I just tell him, "Sibs need perks, too."

• The child with cancer receives many toys and gifts, resulting 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, 81/2, 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 prevent problems and help your child to feel cared for and loved.

• 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.

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