Hospital schooling makes a difference to kids with cancer

Agnes Winarti ,  The Jakarta Post ,  Jakarta   |  Sat, 05/17/2008 11:15 AM  |  City

BEDSIDE SCHOOLING: Ade, a tutor, reads a children's book to a cancer patient at the Cipto Mangunkusumo Hospital in Central Jakarta. (JP/Agnes Winarti)

Children with cancer have to spend most of their days in gloom, having a series of painful and tiring medical treatments in hospitals.

They are deprived of the chance to seize the day as their days are often already seized by their conditions.

Now, a hospital-schooling program, Sekolahku (My School), is giving them that chance once again.

"I wish the activities were held here every day," said Susi, mother of cancer patient Farhan.

On that hospital-schooling day, Farhan, 5, was arranging a picture puzzle with a tutor from Sekolahku, which has been run by the Care for Cancer Kids Foundation Indonesia (YKAKI) since November 2006.

Farhan was being treated at the third-class ward for children with cancer at the Cipto Mangunkusumo Hospital, Central Jakarta.

Every Monday and Thursday, between 3 p.m. and 5:30 p.m., four tutors, and sometimes several volunteers from the foundation, come to the ward with all sorts of educational materials, like story books, drawing books, puzzles and crayons.

"He likes school so much. He used to cry whenever he got a fever and could not go to school. It's a good thing they bring these activities here.

"It keeps Farhan from feeling bored in bed," said Susi, the 28-year-old mother, whose husband works as a street vendor.

Next to Farhan's bed was another belonging to 8-year-old Aldi, who was coloring in, with great enthusiasm, a picture of a cow.

His mother, Iyos, said "Aldi has been absent many times from school. He can only attend class two days a month. It's good he can learn this way".

"Hopefully, he can catch up when he returns to school."

Aldi, who was diagnosed with leukemia in 2004, had a relapse in January.

While Aldi was coloring, his mother approached a tutor and handed her several children's story books, saying another patient, Annisa, had returned home. "She asked me to return these books," said Iyos.

The tutor coordinator, Friesda, who is a final-year student majoring in teaching and education, said,"We lend books to children who want to read, free of charge. Sometimes they are returned, sometimes they are not, but it's no big deal."

Despite their eagerness, not all children are always able to do the hospital schooling activities.

Sonia, 11, was lying weakly on her bed when one of the Sekolahku tutors visited her.

Sonia's mother sat beside her bed, telling the tutor Sonia could not join the schooling activity that day.

"She is always eager to participate in Sekolahku. She likes to study. That's why she is always second or third in her class.

"Today she is so weak after having her treatment."

Rajeni, an 11-year-old lupus patient at the second-class ward, seemed down when her tutor walked in the room.

However, a few minutes afterward, she was busy coloring in her page with a smile on her face.

Ira Soelistyo, one of the founders of YKAKI, said the type of school activity held at the hospital ward depended greatly on the mood and physical condition of each child.

"We cannot force them, especially when they feel weak after having their chemotherapy. But that does not mean these children should lose their right to education."

Ira, whose son died of leukemia three years ago, said she was concerned about the future of children with cancer and their education. "Many of them drop out of school."

Ira said there were many aspects related the school drop-out rate of children with cancer, such as the socio-economic position of the child's family and the number of days the child is absent.

"Many children with cancer are absent from formal schooling between five months and two years, depending on their condition, because they have to spend days going back and forth for hospital treatments.

"Unfortunately, some schools disallow students who have been absent from classes for more than 30 days from taking exams," she said.

"We want to facilitate these children's education because it is their right. Ideally, we want to have formal schools inside hospitals," Ira said.

Ira said Indonesian children with cancer from well-off families are often treated in hospitals in the Netherlands and could continue schooling there. They can even take local school exams sent to the country's hospitals, she said.

"Because that is being applied abroad, we are encouraging the same principle here too."

YKAKI is a member of the International Confederation of Childhood Cancer Parent Organizations (ICCCPO), a worldwide network of organizations for parents of children with cancer. It aims to share information and experiences between parent groups around the world.

The ICCCPO was initiated in May 1994 in Valencia, Spain, and it currently has a membership of 105 organizations from 55 countries, 16 of which are Asian countries, Ira said.

Further information: www.ykaki.org Ira Soelistyo: 021-92029248/0811 103 625

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