A brain tumour turned Yani Enggalhardjo into a confused man. But his family and friends kept believing that he could be healed.

In November 2013, Mr Yani Enggalhardjo could not understand why he was having trouble reading. The 75-year-old who hails from Semarang in Central Java, Indonesia, had difficulty recognising words.

“I was like a small child who had to slowly spell out the words in order to read and make sense,” he explained, “and so I felt something was not right.”

To find out what was wrong, he underwent an MRI scan in Indonesia, which revealed a tumour in the brain. To have it removed, he came to Singapore and consulted with neurologist Dr N V Ramani and neurosurgeon Dr Ng Puay Yong, at Raffles Hospital.

It was then discovered that the primary cancer was actually in the lungs, but had spread to the brain. He was referred to the oncology department at Raffles and was prescribed an oral chemotherapy tablet. Later on, he went on for treatment at the National Cancer Centre Singapore (NCCS), where the same medication was more affordable. Mr Enggalhardjo was doing well with the oral tablet at first, but after taking it for several months, he started to become resistant to it. Dr Ng operated on him to remove the tumour in the brain, and a change of medication to an oral targeted agent was prescribed. However, the cancer also did not respond well to the new drug.

As the disease progressed, he switched from oral chemotherapy to infusion chemotherapy. Unfortunately, there was still no improvement even after the switch.

It was a stressful time for Mr Enggalhardjo and his family, not to mention a puzzling one. Doctors could not determine what was happening to him, nor could anyone provide a solution.

Since he was diagnosed in 2013, he had deteriorated to a state that was described by Mrs Enggalhardjo as “confused insanity”. He lived in this confused and disoriented state for a period of six to seven months.

“It was like he was insane; he could not recognise anything, and did not know how to do simple, usual things like taking a bath. He would do strange things like wanting to eat soap. It was like he was a different person,” said his wife, who is his main caregiver.

He could not stand on his own or speak properly. The cancer markers kept increasing, and in July 2015, he collapsed at the hospital in Indonesia. An evaluation, done in Jakarta, Indonesia, showed that the tumour had recurred in his brain. After he was given whole brain radiation, he was unable to walk and was brought to Semarang. Despite this treatment, his condition continued to deteriorate, with progressive impairment of his mental state. He was drowsy a lot of the time and would sleep for extended periods.

At that point, doctors advised the family to prepare themselves for the worst. Despite all the worry, fear and stress, Mrs Enggalhardjo, a Catholic, still kept the faith and held out on losing hope completely.

There were two other people who did not lose or give up hope. One was his brother, Harsono Enggalhardjo, who diligently helped to search for an oncologist in Singapore. The other was a family friend from Singapore, Richard Hong, who was a cancer survivor himself. Mr Hong connected with Parkway Cancer Centre’s Dr Lim Hong Liang, a senior consultant with more than 25 years of experience in medical oncology.

Following consultation with Dr Lim, it was determined that his deterioration was due to tumour involvement of the covering of the brain (leptomeningeal disease). This led to obstruction of the flow of the normal brain fluid, causing it to accumulate and exert pressure on the brain (hydrocephalus). A further evaluation also showed that the tumour had also involved the covering of the spinal cord.

Radiation was the usual treatment of choice, but in this case, the tumour in the brain had progressed despite whole brain radiation. Because of the poor prognosis and low likelihood of improvement with conventional treatment, no further specific treatment was recommended.

Still, the family kept faith and went through extensive discussion on further treatment options. Eventually, the decision was made for aggressive treatment with drainage of the water from the brain to reduce the pressure (a ventriculoperitoneal shunt – a tube connecting the brain, travelling under the skin and draining into the abdominal cavity), followed by a combination targeted therapy with oral Afatanib and Erbitux.

It was from this point on that Mr Enggalhardjo’s condition improved. By September 2015, he was conscious and alert. He was eating normally and was even able to walk with support. It was a far cry from his previous state.

Having come a long way to recovery, he was even well enough to play tennis.

Dr Lim was thrilled that his patient had resumed the activity, and eagerly shared a photo of Mr Enggalhardjo engaged in the sport. “I have a nice photo of him playing tennis with a helmet on,” said Dr Lim, adding: “He is wearing a helmet to protect his brain and drainage tube from being hit by the tennis ball.”

Today, Mr Enggalhardjo still keeps himself active in the family furniture business, but with a reduced work load. “My brothers, who run the business, think it is better that I keep active, so I still go to the factory each day for three to four hours,” he said.

His wife makes sure that he gets enough rest and nutrition. She prepares specially blended herbal supplements, fresh fruit and vegetable juices, which he takes first thing in the morning every day.

A non-smoker, teetotaller and a devoted family man, Mr Enggalhardjo had no answer for why he had to go through the deep black hole of cancer, but was grateful that he emerged from it – with the support of his family and friends.

“I am eternally grateful to my wife, family, and my brothers, who always supported me,” he said. “When I was unable to function, to think or make decisions for myself, they were strong for me and never gave up. Without them, I would not be here today.”

He was especially touched by his friend Richard, who also did not give up hope. “He had faith that I could be helped and he motivated the right people to take up my case,” he said with great emotion. “I was shown love by all the people around me, not just by my family but also by my friends, and I feel blessed to have a friend like him.”

Mr Enggalhardjo was also grateful to Dr Lim. “He helped me so much,” he said. “Although he is far away in Singapore, I feel he is always beside me. He always replies to my WhatsApp messages immediately every time I need his advice about my condition.”

Written by Sharon Tan

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