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What to Expect | Brothers and Sisters

What are some practical suggestions?

The parents will next need to talk to the brothers and sisters regarding the sibling that now has become a patient. The brothers and sisters will also have particular emotional, physical, and spiritual needs. Jennifer developed a special bonding with her brother, Will, during her treatment. Will was able to make Jennifer laugh, support her in a way we as parent could not, and protected her in a way Jennifer cherished. The following practical suggestions were developed from our own experience and other families whose children were battling leukemia.

What are the emotional concerns?

We found there were a number of common questions asked by brothers and sisters concerning the diagnosis and treatment of the patient, and how the diagnosis of leukemia would affect the brothers and sisters. The parents have a wonderful opportunity to include the brothers and sisters as part of the treatment team. Leukemia affected our whole family and this included the relationship of the brothers and sisters. The brothers and sisters will have a certain amount of confusion about the diagnosis, fear whether they can get sick with cancer, and questions as to how it will impact their lives and the life of the patient. We found that direct and honest communication with the brothers and sisters was very important. How much and what type of information you should give the brothers and sisters at this point should be based on the child's personality and age.
 

• Infants (0-2 years of age) - Toddlers will notice a change in the home and sense the fear of the parents and the patient. Toddlers can be told that their brother or sister is sick and will have to take medicine to get better. This allows the parent to acknowledge the diagnosis and for the toddler to associate the change in the home environment with the illness.
• Preschoolers (2-7 years of age) - Preschoolers should also be told their brother or sister is sick, will have to take medicine to get better, and that the patient will be in the hospital for special care. The preschoolers should be told there may be physical changes such as hair loss, upset stomach, and high fevers. Parents find that they should let the preschoolers ask about details of the diagnosis or treatment versus trying to fill in all the details which can create confusion to the preschooler.
• Young Children (7-12 years of age) - This age group will tend to ask more detailed questions about the diagnosis or treatment. They have the capability to understand the seriousness and the nature of the treatments. Parents should discuss more detail with this age group in order to reduce any fears or imaginary problems that the child can develop without sufficient explanation.
• Teenagers (12+ years of age) - Teenagers will ask specific medical and treatment questions that can best be handled by the parent or the treatment team. The parent often finds the "I don't know" is their common answer, but should be followed with the "We will find out" response.
• Shadow Children - The parents find themselves emotionally, physically and financially focused on the patient. The lives of the brothers and sisters have been disrupted. The brothers and sisters can and do develop a resentment that their lives have been turned upside down. The parents should reemphasize that the patient has done nothing to cause this illness, that the lives of the family will not be the same, and that the family will have to work together to adjust to this change. Parents will find that special nights out with younger children and date nights with the older children can allow them to direct their limited energy to the other children. Words of accomplishment and even time alone in a hospital corridor can be special times to the brothers and sisters. 
• Extra Attention To The Patient - The patient naturally will receive extra attention not only from the parents but also from the friends and relatives. We found that extra gifts were bestowed on Jennifer. We helped balance this attention by asking friends and relatives to also bring gifts for Will. These gifts do not have to be of the same dollar amount and significance, but the brothers and sisters appreciate the fact they also are being remembered.
• Treatment Team - Brothers and sisters can be invaluable and of great help to the patient and the parents. Depending upon their age and personalities, the brothers and sisters should be given as much opportunity as possible to be part of the treatment team. This includes helping the patient check in and out of the hospital, visits to the clinic, and help gathering toys and clothes for a hospital visit. Most hospitals will allow brothers and sisters to spend the night with the patient. These special times are often cherished by the brothers and sisters as they feel like an important part of the treatment team. Photographs of the hospital or treatment room can help brothers and sisters visualize out of town hospitalization or clinic visits.

What are the physical concerns?

• Exposure - Brothers and sisters of all ages should be told that leukemia is not contagious. This will put the brothers and sisters at ease that they will not get leukemia by being around the patient. The brothers and sisters will then be prepared to answer questions from schoolmates and friends who also have this natural question on their minds.
• Physical Changes In The Patient - The most obvious change will be the loss of hair if chemotherapy or transplant treatments are used. Moreover, with chemotherapy, transplant and alternative/homeopathy treatments, the brothers and sisters should be prepared that the patient can have nausea, diarrhea, vomiting, and temperature spikes. Will would get a crew cut when Jennifer was losing her hair as a sign of support for her.
• Behavioral Changes - The parents should be sensitive to behavioral changes which often are shown in physical actions of the brothers and sisters. Headaches, attention by sensitivity to bumps and bruises, and aggressiveness at school are symptoms commonly experienced by brothers and sisters of the patient. Sensitivity by the parent and open communication with friends, school officials, and family can help identify these physical changes. The parents can then determine if the brother or sister is in need of additional special time, emotional support and even counseling at this stage.

What common questions are asked by brothers and sisters?

• Questions - Brothers and sisters of the patient often have the same questions as the patient. The parents are challenged, because the brothers and sisters of different ages will have a differing need for the type of communication, the level of detail, and the frankness of the seriousness of the illness. The information in Your Child will be helpful to the parents in dealing with age related concerns and commonly asked questions.
• Helpful Hints - Helpful information is set forth in the Reference section that specifically deals with how brothers and sisters can: Talk about the patient and his or her cancer, recognize and deal with the fear they may lose the patient, discuss feelings of guilt when they act out because of the attention given the patient, how to handle their anger that the patient was diagnosed with leukemia, recognize the feeling of neglect and loneliness because of the change in his or her life, and how to deal with the side effects of the patient.