As soon as a child is diagnosed with a life-threatening illness, a family’s world is turned upside down and it affects the entire family. Brothers and sisters can have a variety of reactions to their sibling’s illness and the dramatic changes in their family, and may have difficulty coping with the situation and their feelings.
 
Each day, Friends of Karen helps siblings understand their brother or sister’s illness and build personal strength. At the hospital or in a family’s home, our experienced child life specialists and creative arts therapists work one-on-one with the ill child, their siblings and their parents to help them cope.
 
Brian and his family are just one example. Brian is 7 years old with two older brothers (Ricki, 8 and Dayanne, 9) and a baby brother. Brian has ALL (acute lymphoblastic leukemia) and, due to his treatment, he has been isolated at home for quite some time and has been home schooled. His mom had expressed the need for helping Brian and his brothers understand his illness and addressing their sibling relationships. This was a perfect opportunity for a Friends of Karen’s sibling support professional to step in.
 
Friends of Karen creative arts therapist, Melinda, and bilingual social worker, Natalia, worked very closely as a team with this family since both parents are primarily Spanish speaking. Prior to Melinda’s initial visit with the siblings, she and Natalia provided several Spanish language illness-related education books for mom to use with the boys. As a result, they demonstrated some knowledge of Brian’s illness during their first visit together. During this initial meeting, Melinda presented a legacy doll (a unique doll used to help sick children and their families learn about medical procedures and illnesses) and information about catheters and ports (which are used to carry nutrients and medicine into the body during treatment) to the boys. Brian seemed comfortable with the doll and even helped to demonstrate procedures on the doll for his brothers.
 
During another visit, Melinda combined art and games with the illness education so as to better engage 9-year-old Dayanne. He may have been a little fearful of the legacy doll and medical play. The flexibility of Friends of Karen’s sibling support program, combined with the experience of all our sibling support specialists, allows us to creatively meet the needs of each child.
 
Melinda also read the book, Oliver’s Story with the boys. This book provided more illness education for the brothers, especially around Brian’s hair loss. Dayanne, Ricki, and even Brian had all believed that Brian’s hair loss was due to the cancer (this is a common misconception for many siblings). With the aid of the book, Melinda was able to explain that chemotherapy was the cause of Brian’s hair loss and not the cancer itself. Next, they played a game where the boys drew red, white, and yellow blood cells, in addition to cancer cells. Then after Melinda hid all the cells, each brother took turns acting as the “chemo shark,” trying to find all the “cancer cells” and destroy them without destroying the other cells. If the chemo shark found one of the other blood cells, he had to give it to another sibling who then explained what the “job” of the cell was. The boys had a great time playing this game and appeared to retain the information they had learned about Brian’s illness.
 
This past month Brian was finally able to return to school. While this was an exciting step and meant he would no longer feel so isolated, this can also be a particularly challenging time of transition for many families. Melinda will, therefore, now focus some of her work on Brian’s return to school, as she helps the family as they continue coping with Brian’s illness and treatment together.