Journeying Thousands of Kilometers for a Cure

People with cancer are racing against time for therapy. Unfortunately, few regions have adequate facilities, forcing many patients to travel thousands of kilometers to Jakarta to increase their chances of recovery.

KOMPAS/MACHRADIN WAHYUDI RITONGA

Yusuf, 2, a young cancer patient, plays with a caregiver on Tuesday (4/2/2020) at Dr. Hasan Sadikin Central General Hospital in Bandung, West Java.

Sulistiani, 39, did not think much when the doctor in her home regency of Pandeglang, Banten, referred her son to the Cipto Mangunkusumo General Hospital (RSCM) in Jakarta. The two departed for Jakarta. Her son Fahmi, 11, needed immediate medical therapy after he was diagnosed with late-stage osteosarcoma or bone cancer.

At first, there was only a bump on Fahmi’s right leg. At the time, the boy was taken to a traditional massage therapist as he was afraid to go to a doctor. He then underwent a bekam (wet cupping) treatment. The bump was also treated with binahong leaves (Madeira-vine or Anredera coldifolia) on the advice of several people. However, the bump remained.

After three months, Sulistiani brought Fahmi to a hospital in Pandeglang, where he was diagnosed with cancer. “The doctor scolded me as I delayed taking my son to him. I was shocked when he told us about the cancer,” Sulistiani said in Jakarta on Thursday (30/1/2020).

She visited two doctors in two separate hospitals in Pandeglang. Both referred Fahmi to the RSCM because of their own limitations. Pandeglang has no chemotherapy facilities. A thorough reexamination was conducted at the RSCM, where the doctor decided to amputate Fahmi’s right leg to prevent the cancer cells from spreading. Fahmi also underwent chemotherapy.

KOMPAS/SAIFUL RIJAL YUNUS

Jihan attends to her mother on Wednesday (29/1/2020) at their home in Kendari, Souhteast Sulawesi. The 11-year-old has not attended school for more than a month because she is taking care of her mother, who has Stage IV liver cancer. The poor in Kendari have difficulty seeking treatment, especially for severe illnesses like cancer, because of unequal distribution of local health services.

“He wanted to become a soccer player. He was sad but has regained his spirit. We have completed six chemotherapy sessions. We have two more coming, as there are some of the cancer cells in Fahmi’s lungs,” Sulistiani said.

Ambon resident Apriany, 29, had to temporarily move to Jakarta, thousands of kilometers from his home, because chemotherapy facilities in her hometown are inadequate. In 2018, she found out that her second child, 4-year-old Abi, had leukemia. Officials at the local community health center (Puskesmas) had thought nothing of Abi’s fever and coughs.

When he began to show other symptoms, such as his face turning pale, his belly swelling and fever recurring three or four times a month, Abi was taken to a pediatrician. A blood examination showed he had leukemia. His hemoglobin level dropped, and he had to undergo a blood transfusion.

Abi was then referred to Jakarta for the chemotherapy. Apriany was worried throughout the journey to Jakarta as Abi’s condition could suddenly drop. A nurse accompanied them during the journey. They boy then started a chemotherapy series that will be completed next year.

KOMPAS/YOLA SASTRA

Irfan, 4.5, rides a tricycle on 30 Jan. 2020 at a rehabilitation center run by Zakat Indonesia in Padang, West Sumatra. Irfan, whose family lives in Pulupuah district of Agam, West Sumatra, is staying at the center while he undergoes chemotherapy treatment for leukemia at Dr. M. Djamil Central General Hospital in Padang.

Transportation cost

Maimunah, 47, and Sudirman, 52, of Palupuah in Agam regency, West Sumatra, traveled to Padang to get therapy for their son Irfan, 4, when he was diagnosed with leukemia in December 2018.

At the time, Irfan suffered from bouts of fever, and they had brought him to the local Puskesmas multiple times. When his health deteriorated, he was referred to the Ibnu Sina Hospital in Bukittinggi. The family learned that Irfan’s hemoglobin level had dropped, which is why he got a blood transfusion. After Irfan was referred to the Dr. M. Djamil General Hospital in Padang, a lab test in Jakarta found that Irfan had blood cancer. “Irfan has stage-2 acute lymphoblastic leukemia. He had suffered from the cancer for two months since the first symptoms appeared,” said Maimunah at the Inisiatif Zakat Indonesia (IZI) rehabilitation home in West Sumatra last week.

Now, Irfan is undergoing chemotherapy at the Dr. M Djamil General Hospital in Padang. The fifth of six siblings has done 19 chemotherapy sessions. Maimunah said the hospital had adequate therapy facilities and oncologists. However, in the past week, Irfan has had to queue for chemotherapy.

Cancer therapy is often delayed due to parents’ lack of knowledge and medical personnel’s lack of capacity in identifying the symptoms.

During the therapy, Maimunah and her husband, who work as farmers, must think about the living and transportation costs while accompanying their son for therapy in Padang. While the therapy itself is paid for by the Healthcare and Social Security Agency (BPJS Kesehatan), they have to live in the city for months and cannot work.

Their five other children are currently living with their grandmother. To reduce the living cost, the couple stays at the IZI rehabilitation home every time they go to Padang for chemotherapy. There, they can stay and eat for free.

Indonesian Care for Cancer Kids Foundation (YKAKI) chair Ira Soelistyo said cancer in children was different from cancer in adults. With early detection, children have a higher chance of recovery. However, cancer therapy is often delayed due to parents’ lack of knowledge and medical personnel’s lack of capacity in identifying the symptoms. Limited cancer therapy facilities is another obstacle, resulting in patients having to journey thousands of kilometers for treatment. (Kompas, 18/1/2020).