Families with ill children find a place to call home

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

For children with cancer and their parents, a home is not just a place to rest but also a place to prepare themselves for their next battle against the illness.

Two-year-old Aldo, who just had his second surgery last week to remove a cancerous kidney, was being fed by his mother when The Jakarta Post recently visited the shelter where they're currently living.

"We are now waiting for lab results for further chemotherapy treatment and a consultation with his doctor. I guess we will stay here for more than a week for that," said Aldo's father, Sirojuddin, at the Rumah Kita (Our Home) shelter on Jl. Percetakan Negara XI in Cempaka Putih, Central Jakarta.

Sirojuddin said he usually took his wife and son to stay at the shelter three days before his son's chemotherapy and a day after the treatment before returning to their hometown in Lampung by ship.

Since November last year, Aldo has been treated for testicular cancer in the Cipto Mangunkusumo Hospital, near the shelter.

In the first one-and-a-half months, Sirojuddin and his wife, Indah Sari, had to dig deep into their pockets to pay a total of Rp 7 million for Aldo's medical expenses due to incomplete paperwork for their Gakin card, which allows poor families to access healthcare.

During that period, Aldo's parents slept on the floor of the hospital's third-class ward. They also had to pay more money for meals.

"We can now use our Gakin card to pay for Aldo's treatment. When he is treated at the hospital, I usually fill in the required documents and queue for his medicine," he said.

Sirojuddin, who works as a private employee in Lampung, said since his son was ill, he could only work an average of 2.5 weeks a month.

"I spend the rest of the month getting Aldo to Jakarta for his treatment."

Money is a crucial issue for the young couple.

Sirojuddin said staying at the Rumah Kita shelter did not just help in terms of getting a decent place to rest but also in reducing other expenses related to Aldo's medical treatments.

"We only need to pay Rp 5,000 a day here," said Indah, 24.

The shelter caretaker provides all necessities, like rice, sugar, cooking oil, salt and water, as well as soap and mattresses.

"We can cook rice, wash clothes and rest. This shelter is very helpful," said Sirojuddin, adding another patient he knew said a similar shelter at the Cipto Mangunkusumo Hospital complex could cost up to Rp 15,000 a day, with a bed as the only facility.

Caretaker of Rumah Kita shelter, Neni Fitriani, 32, said 34 families from Bekasi, Sukabumi, Karawang, as well as outer islands, like Lampung, Batam, Bali and North Maluku, had stayed in the shelter since its establishment in December 2006.

"They can use any available utensils, but they have to wash them after use," said Neni. "Each family also has a schedule to sweep and mop the floors and clean the windows because we don't have a domestic helper."

"When many families cram into the house for a period of time, we require all dads to sleep in the living room, while the moms sleep with their children in the two rooms inside," said Neni.

Indah Sari said it was not difficult to share the house with other families. "They are usually the same people we meet when our son is treated at the hospital. We share the same doctor too."

The small shelter, with a capacity of six families, was initiated by the Care for Cancer Kids Foundation Indonesia (YKAKI).

Most of the children are leukemia or eye cancer patients at Cipto Mangunkusumo and St. Carolus Hospitals in Central Jakarta or Fatmawati Hospital in South Jakarta.

When YKAKI started renting out the house, owned by Neni's father since 1932, Neni recalled they were met with objection from some of the neighbors. "But they calmed down once they understood cancer and tumors were not contagious."

"These children do not have strong immunity systems. So we have to carefully screen the families that stay here because we need to make sure their children's illnesses are not transmittable."

Iin, who has been living in the neighborhood for more than 50 years, said she did not mind the shelter at all.

"The families staying in the shelter are regarded just like other longtime neighbors. They mingle with the rest of the neighbors quite easily," she said.

Six-year-old Akbar from Ternate, North Maluku, has been heard singing in the shelter from a few houses away.

Akbar, who is now blind due to eye cancer, has been living in Rumah Kami for the past seven months with his mom and plays around the shelter, despite his disability.

"The kids from the shelter also play and laugh with our kids. They bring more life to the street," Iin said.

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