Mainstreaming the Leukemic Child

At one time, a diagnosis of leukemia inevitably meant death for a child. Now, however, many children who have had leukemia are living long, full lives, some with intermittent periods of disease and treatment, and others with no sign of disease at all. Because so many leukemic children who have periods of remission (the symptom-free state), many are being mainstreamed back into their communities instead of being cared for in separate treatment facilities, as was once the case.

Although there are many advantages to mainstreaming, there are some difficulties as well. Leukemic children may look different from other children. They may be thin, pale, and bald from treatment such as chemotherapy. They may have little energy for physical activities and may need to go back to the hospital from time to time treatments. Because leukemia is a form of cancer, it has the stigma of cancer associated with it, and its earlier association with death makes it upsetting to many people who do not understand it. Therefore, mainstreaming the leukemic child can require careful, sensitive preparation.

Once large metropolitan children's hospital has developed several programs for such a mainstreaming. The primary goal of he program is to work with the entire family (the ill child, parents, and siblings) and the child's total environment (home and school) to make the transition as smooth as possible. Several steps are undertaken while the child is in the acute phase of illness. The hospital; provides a residential hotel for families of children undergoing radiation therapy so that the parents can be near the child throughout treatment. A community kitchen, dining room, and living room enable parents to meet and share information and concerns with each other.

Special recreational programs developed by trained patient activity specialists enable sick children to play and, at the same time, to work out conflicts about illness and treatment. Doctor-patient games and body-image games, for example, can reveal adjustment problems and can help the child make the transition back to normal life. Siblings who are having trouble adjusting to their brother's or sister's illness can also participate in the playrooms and work on their own confusions.

Other interventions help the family understand the leukemic child's situation. Parents can participate in educational programs that are designed to allay fears, to teach the parents to provide daily home care, and to help the parents help the child adjust to the disease.