Learning to Cope With Child Cancer : Program Provides Help for Both Parents and Youngsters
The sixth-grade boy was diagnosed as having leukemia only last month. But already, here he and his parents were, in Pat Deasy-Spinetta’s office, learning how to prepare for junior high school in September.
The preparations include talking with teachers about tolerating occasional absences due to chemical treatments for the cancer, and about understanding that certain drugs can have unavoidable effects, such as causing a student’s handwriting to scrawl.
In addition, two of the boy’s best friends will go with him to the cancer clinic during the summer to see what goes on, so that their knowledge can help smooth relations between the boy and other classmates at a later time when hair thinning or other side effects of his treatment began to show.
“Sure, he’s going to go to school in the fall,” said Deasy-Spinetta, a psychologist at San Diego State University. “The child is still a Johnny or Billy or Suzy, not to be seen only as a lymphoma patient.”
More than 50% of all children diagnosed today with acute lymphoblastic leukemia now live free of the disease for five years or longer, the benchmark for considering a patient cured. Only a decade ago, before advances in chemotherapy, most children would live only a few weeks to a couple of months after diagnosis.
As a consequence, Pat Deasy-Spinetta and her husband John Spinetta, also a San Diego State psychologist, have pioneered a program to emphasize the need for children and their parents to prepare for life, rather than death, with cancer.
“Yes, you’re living with uncertainty, even after five years, because there are some recurrences, some long-term unknowns from treatment,” said John Spinetta, whose work on the psychological effects of cancer on children began in the early 1970s. “And you don’t know at the point of diagnosis who will make it.
“But because of medical breakthroughs, the emphasis now has to be on living, on keeping the child and family going forward, balancing the focus between disease and planning for a successful future.”
Dr. Faith H. Kung, longtime chief of child cancer treatment at UC San Diego Medical Center, said, “Children need to feel normal and feel accepted as normal as soon as they can, to get back to whatever they were doing” before the disease was diagnosed.
A strong family structure is the key to helping children win the psychological battle with cancer by continuing their usual activities, Spinetta said. And since school is such a vital part of a child’s life, his wife has nurtured the School Intervention Program, where she serves as a clearinghouse with children, parents and teachers in keeping a patient’s education as free-flowing as possible.
The program will be explained today in Los Angeles at the National Conference on Advances in the Care of the Child with Cancer, sponsored by the American Cancer Society. The society’s California division has funded the Spinettas’ work with a $300,000 grant.
“Five years ago at a conference like this, the talks would be 100% medical,” Spinetta said.
The family’s reaction to the diagnosis will determine how well the child will cope with his cancer, Spinetta said. “The problem is usually in getting the family not to sacrifice other relationships to the exclusive focus on the needs of the patient,” he said. The Spinettas’ files are replete with cases of husbands and wives who divorced over the strain of having a child with cancer, and of families whose other children felt slighted because of the attention paid to the ill sibling.
“You try to give as much information to families as possible so that they can see what is the best approach, to communicate openly and understand the ways of coping,” Spinetta said.
One of the crucial bits of information is for the physician early on to tell the family that the child will be returning to school as early as possible, to give the family a new equilibrium to replace the one thrown off by knowledge of the disease, Deasy-Spinetta said.
“The doctor will say, ‘And school resumes at X time,’ presenting the information as matter of factly as he can in the same vein he discusses medical details such as clinic visits, the use of drugs, etc.,” she said.
“Hair or no hair, leg or no leg, schooling will resume.”
John Spinetta said that such information is also important to boost the parents’ outlook. “It tells the parents, ‘Hey, the kid is going to make it.’ ”
The Spinettas have more than 300 children in the School Intervention Program throughout the San Diego County. The American Cancer Society hopes to expand the program to other regions as money becomes available.
“We’ve had good cooperation from both the San Diego area school districts and from medical teams,” Deasy-Spinetta said. “Everyone agrees that life does not revolve around the hospital, and that the child while in school is just another student, not a patient who happens to be in school.”
Under the program, teachers are counseled that they do not need to worry about medical problems, as cancer is not an acute disease and emergencies will not crop up in the classroom. The teachers learn that certain problems, such as physical effects of chemotherapy, should be discussed in some fashion with the other class members. The counseling takes place together with the parents and children.
In elementary school classes, children with cancer will often talk about their illnesses in a discussion setting with classmates. At the secondary level, close friends of the children will serve a similar function.
“We want to recede into the background as much as possible,” Deasy-Spinetta said. “The hospital team is not to replace the normal routine. So as soon as possible, the parents, the teachers, the school counselors need to have the major role in day-to-day support.”
Spinetta’s research suggests children that who return to school as early as possible and take an active role in their treatment adjust far better to their situation and will lead more productive lives.
“If a kid is pulled out of school for four years or more, they lose their self-esteem, and they will have social problems when they enter adulthood,” he said.
Kung of UCSD said that parents quite naturally think they should shelter their children once they learn of the cancer diagnosis. “And it can be difficult to tell them not to do it, that, psychologically speaking, the child will be much healthier,” she said.
While childhood cancer is no longer a death sentence, many children still die eventually from the disease. Yet the emphasis on a full life has benefits even at the time of death, the Spinettas said.
“There’s almost an unspoken line--at the time where the bad days begin to outweigh the good and the medicine just isn’t working anymore,” Spinetta said. “If the school, if parents have communicated all along, then the approaching death is bearable.”
The Spinettas spoke of situations where the child stayed in school until the final days, and where most of the faculty attended the funeral.
“I remember one kid who died on Monday but was sitting up Sunday night studying for an exam,” Deasy-Spinetta said. “Kids are not like adults in that they don’t sit down and say, ‘I’m going to be dead in three weeks.’
“In situations where the school has worked well with the students, the kids live well until the very end.”