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Lending hand to children with cancer

A. Kurniawan Ulung
A. Kurniawan Ulung

The Jakarta Post

Jakarta | Wed, October 10, 2018 | 09:36 am
Lending hand to children with cancer

Shared concern: Anyo Gold Ribbon Configuration participants release yellow balloons into the air to show their support for children with cancer. (-/A.Kurniawan Ulung)

Clad in yellow T-shirts one cloudy afternoon, hundreds of cheerful youngsters flocked to Lapangan Banteng park in Central Jakarta.

They stood in lines and walked slowly to the soccer field while drones flew above them. In the center of the field, they formed a large yellow bow as they waved their hands at the drones that captured them on video.

The large yellow bow the formed was a symbol of their support for children with cancer and their families, as well as their public awareness campaign on cancer, the world’s second leading cause of death.

The World Health Organization reported that cancer was responsible for about 9.6 million deaths so far in 2018.

The youngsters were taking part in the Anyo Gold Ribbon Configuration 2018 event, held by the Indonesian Anyo Foundation (YAI) to mark September, the International Childhood Cancer Awareness Month.

“We link our hands to inform people that cancer is not an infectious disease and that the earlier a cancer is diagnosed and patients receive medical treatment, the greater their chances for recovery,” said YAI head Pinta Manullang-Panggabean.

Pinta and her husband, Sabar Manullang, established the foundation on June 27, 2012 in their son’s name, Andrew “Anyo” Maruli David Manullang. Anyo passed away on Dec. 7, 2008 from leukemia, a type of childhood cancer.

Every 3 minutes, a child dies from cancer and every year, more than 250,000 children and adolescents below 20 are diagnosed with cancer, says Childhood Cancer International. It is the world’s largest patient support organization for childhood cancer and has 181 member organizations in 90 countries.

Pediatrician and oncologist Edi Setiawan Tehuteru of Jakarta’s Dharmais Cancer Hospital, who took part in the campaign, said 2 to 3 percent of cancer patients in Indonesia were children.

Cancer awareness: Participants of the 2018 Anyo Gold Ribbon Configuration form a huge yellow ribbon in Jakarta as part of a campaign for International Childhood Cancer Awareness Month in September.Cancer awareness: Participants of the 2018 Anyo Gold Ribbon Configuration form a huge yellow ribbon in Jakarta as part of a campaign for International Childhood Cancer Awareness Month in September. (Courtesy of the Indonesian Anyo Foundation/-)

“That percentage might be very small. But there are 4,100 new cases of childhood cancer every year in Indonesia, while oncologists [specializing in childhood cancer] only number around 70,” he said.

Cancer is a disease that involves abnormal cell growth. If it is not immediately treated, cancer cells can spread to nearby tissues and form new tumors throughout the body. Edi said that the causes of childhood cancer remained a mystery, but experts allege that four factors lead to their development: genetic makeup, radiation, viral infections and chemicals.

“Unlike adult cancer, childhood cancer cannot be prevented because its causes are unclear,” he said.

Edi said leukemia was the most common childhood cancer in Indonesia. Retinoblastoma, another type of childhood cancer, is the second most common type of childhood cancer, and was one of the few types that can be diagnosed early from observing its signs and symptoms.

This eye cancer starts in the retina, the tissue that lines the rear part of the eye. If parents notice that their children appear to have white pupils — one of early signs of retinoblastoma — they should immediately take them to a hospital for an examination.

“Another early sign of retinoblastoma is eyes that do not appear to look in the same direction,” said Edi.

Edi said that, based on his experience, parents were usually late to visit his clinic to check whether their children had cancer. In cases of retinoblastoma, for example, the tumor had already grown so large that the only way to save his patient’s life was to remove the entire eye.

“I have never received a retinoblastoma patient at an early stage [of the disease],” said Edi. “Retinoblastoma patients always come to me in the advanced stages. I can only try to save their lives, but not their eyes.”

If retinoblastoma was diagnosed at an early stage, he said, the affected eye did not need to be removed and chemotherapy was also unnecessary.

However, Edi said chemotherapy was still the only way to treat people with advanced cancers. It would not only shrink the malignant tumor, but also kill the cancer cells that had spread to other parts of the body to prevent further reproduction and growth.

Taking action: Indonesian Anyo Foundation (YAI) founder Sabar Manullang (right) poses with his wife, Pinta Manullang-Panggabean. Taking action: Indonesian Anyo Foundation (YAI) founder Sabar Manullang (right) poses with his wife, Pinta Manullang-Panggabean. (-/-)

He understood that many people were afraid of hair loss and the other side effects of chemotherapy. However, it was still the only way to help cancer patients recover and live longer.

“I admit that chemotherapy is a ‘stupid’ drug because it attacks not just cancer cells, but also healthy cells, including hair follicles. But don’t worry. After chemotherapy ends, the hair will regrow,” said Edi.

Edi had no idea of the efficacy of alternative medicines, which some people turned to and trusted more than chemotherapy. “Alternative medicine might have the ability to shrink the tumor in a certain area, but what they forget is that cancer cells can grow and travel fast throughout the body and that alternative medicines cannot follow as the cancer cells spread,” he said

Edi expressed his hope that participants of Anyo Gold Ribbon Configuration would raise people’s awareness about childhood cancer and help address the misunderstandings surrounding chemotherapy. They were also expected to help keep children with cancer entertained, because stress could render their treatment ineffective.

“Maintaining a happy heart is also medicine. Chemotherapy will be effective if children with cancer are happy,” he said.

Believing in miracles

Holding on: Hendri Handayani holds her baby, Arsyil Fadillah, who has been diagnosed with Anaplastic Ependymoma brain tumor.Holding on: Hendri Handayani holds her baby, Arsyil Fadillah, who has been diagnosed with Anaplastic Ependymoma brain tumor. (-/A.Kurniawan Ulung)

A baby’s first birthday is supposed to be a celebration for every mother, but this was not the case for Hendri Handayani.

When her son, Arsyil Fadillah, turned 1 on May 23, 2017, he was so active that she could not stop him from grabbing at everything around him.

“He was very active, but it seemed that his left foot was heavy and he had difficulties moving it. Since he did not show any signs of illness, I tried to think positively. He smiled and laughed all the time,” the 28-year-old said.

Hendri started worrying about Arsyil when he suddenly stopped moving his left hand. Afraid, she visited a pediatrician in Cirebon, West Java, to have him examined.

“The doctor said there was ‘something wrong’ in his head. I was then told to go to a neurologist,” she recalled.

Hendri followed the advice. Her heart broke when the neurologist told her that Arsyil had a brain tumor. She went to a neurosurgeon, who told her that surgery was the only way to save her son.

Terribly frightened, she went to other neurosurgeons for second and third opinions. But they all gave her the same answer: surgery. She was told to go immediately to Fatmawati Central General Hospital in South Jakarta.

At home, she had an argument with her father: she wanted the surgery for her son, but he insisted on alternative medicine, with which she disagreed, fearing its safety and efficacy.

They argued long and Arsyil did not receive immediate help. “My father, who insisted on alternative medicine, finally gave up and let me rush Arsyil to Fatmawati hospital when his condition worsened and he vomited all the food he ate,” she said.

At Fatmawati, it was discovered that Arsyil had anaplastic ependymoma, a rare type of malignant tumor that forms in the central nervous system. In July 2017, the boy underwent his first surgery at the hospital and 80 percent of the tumor was removed.

Because of the delay in seeking help, the tumor was already in its third stage and the cancerous cells had spread. Arsyil was transferred to Dharmais Cancer Hospital in West Jakarta, where he underwent other surgeries.

The baby had undergone six surgeries at Dharmais from January to May 2018. His lapsed into a coma after his seventh surgery, and many lost hope that he would recover.

Hendri, however, remained optimistic that her son would survive, constantly whispering in his ear: “If you still want to fight, let’s fight together. But if you are no longer strong enough to withstand the pain, I will let you go. It is up to you, Arsyil,” she recalled in tears.

Arsyil woke after a month-long coma, which Hendri believed to be a sign that her baby was not ready to give up. “It is a miracle,” she said.

On May 28, Arsyil was released from Dharmais and Hendri has been caring for him at Rumah Anyo (Anyo’s House), founded by the Indonesian Anyo Foundation (YAI) to provide care for cancer patients.

She also takes him to the hospital three times a week to check his progress and for physiotherapy.

Arsyl’s health is improving. “Now, he can breathe [on his own] without [supplemental] oxygen,” said Hendri, who hoped that her story might encourage other cancer patients not to give up hope.

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