The story of a student who was diagnosed with cancer in the brain stem, who underwent all forms of treatment, nine surgeries, and then radiation, but was unable to stop the tumor’s progression, ultimately losing his vision and having to drop out of college; his encounter with ECCT helped him rise again to finish his studies.
“Excuse me, ma’am, what will they give inside?” Aji’s mother asked someone sitting in the adjacent chair.
“It depends on what kind of cancer you have…” was the response.
Aji’s mother imagined she would receive blessed water or talismans, like many things she had heard about in this predominantly religious country.
Even if this turned out to be superstitious, Aji’s mother had already decided to leave that behind. But she needed to know what the treatment would entail. The friend who brought her here didn’t really understand how cancer treatment worked at this clinic either.
Seeing the crowded waiting area and sensing it wasn’t a medical place, Aji’s mother felt anxious, worried that this might be some kind of witch doctor clinic. When she saw a man walking by with a bag, she compared him to the photo of the person she was looking for, a photo she had received from her sibling the night before.
This clinic had become a topic of discussion in various circles. But Aji’s mother had no time to follow it. Her days were filled with the pounding of her heart, which seemed to always race. Aji, her child, was often in critical condition.
From a glimpse, the man seemed to match the photo she held. He didn’t look like a sorcerer, which eased her heart a little.
With a determined spirit, they set off, accompanied by a friend and her husband, who was merely sulking. He didn’t agree with treating their child at this cancer research clinic, believing it was not medical and was likely to be witchcraft. That’s what was on the father’s mind. The thought of his child being read mantras made his stomach churn.
Many relatives had already come offering various forms of help, seeing Aji’s condition didn’t improve. Some suggested readings to be thrown onto the roof. Certainly not comic books like Doraemon or Shinchan.
There were also suggestions to lay Aji in front of a door and read certain texts over him. People who cared and sympathized with Aji’s situation.
Aji was a teenager who had never truly been in good health. Since he was little, Aji had grown like other children his age. Until one day, he suddenly felt pain in his head and weakness throughout his body. Then the pain would go away, only to return. In the morning, Aji would be in pain, and by the evening, the pain would return. During the day, when the pain subsided, Aji could play with his friends. By then, he was in the first grade of elementary school. Aji was indeed a very strong child. He never complained.
One afternoon, while watching television, Aji said to his mother, “Why is the TV flickering?” His mother was confused because the TV was fine. The next day, Aji said the same thing again.
Aji’s parents then took him to an optical store for an eye examination. But the optician said Aji’s eyes were perfectly fine. Then they took Aji to a general practitioner, who merely suggested he was inactive and advised more exercise. This left them confused.
One day, Aji vomited. But his vomiting was not like usual; it was different… Strange…
That day, his mother, who worked at a hospital in Surabaya, met with a friend who was a neurologist; she shared her concerns regarding Aji’s unusual vomiting.
Her friend advised her to take Aji to the hospital immediately. Aji began undergoing examinations, which revealed that his brain was filled with fluid. That same day, the medical team held an emergency meeting to perform surgery to install a shunt to drain the fluid that had filled Aji’s brain cavity.
Aji was diagnosed with hydrocephalus. His mother felt weak all over. The universe felt dark. The thought of Aji having to endure surgical cuts at such a young age overwhelmed her. Aji’s mother drowned in a flood of tears that seemed endless. Not just because of the surgery but because the hydrocephalus diagnosis made her soul tremble.
After surgery, Aji lay in the ICU for seven days. His mother remained by his side, praying continuously. Aji’s condition was never stable. Sometimes he was conscious, other times he was delirious.
One day, Aji appeared very weak, struggling to breathe, and was returned to surgery. The doctors replaced a clogged shunt. This happened again that same month. Three surgeries in one month.
I can’t imagine the pain Aji felt. He never complained. His mother’s tears seemed to have dried up. She could only hope that she had the strength to support her child.
Aji’s mother’s heart continued to cry out in question: why my child? She fought to dismiss all the worst possibilities. She wanted to cherish and care for Aji for as long as possible, scolding him even though he rarely misbehaved. Aji was a sweet boy who was never troublesome.
When Aji finally left the hospital, his condition was still very sad. He would go to school only when he felt healthy. Teachers and friends were very protective of Aji, knowing his situation. A few times, he bumped into walls due to suddenly losing consciousness. When that happened, Aji would be hospitalized again.
What parent wouldn’t feel sad seeing this situation? At Aji’s age, he should have been busy playing and running around, playing football, and hiding. Instead, he was constantly in and out of surgical rooms, surrounded by infusion tubes. A child his age should be climbing guava trees in the neighbor’s yard.
Every time after surgery, the medical team would shake hands with Aji’s parents, telling them to “stay patient.” They understood they had to remain strong despite the painful circumstances weighing down their souls.
Their child was sick, and the father was laid off. But they knew that life is like a wheel, always turning and never stopping at one point. There would be comings and goings. There are times when we can laugh, and then times to cry. Yet life continues.
One day, shortly after a surgery, Aji’s bed was moved to face the qibla. The doctors seemed desperate in dealing with Aji’s condition.
Once, after a surgery, the doctor said, “You still have two left, right?”
The mother understood the implications.
The medical team seemed to have no idea what to do anymore. Their thoughts were in turmoil, like waves crashing against rocks. They felt not only thrown off balance but also tossed and rolled about. They had come to realize how fragile human life can be.
Their defense seemed unable to bear the weight of this suffering anymore. Before Him, the mother and father could only kneel in tears and hopes that were beginning to fade.
A grueling test of life. They could only appeal to Allah, constantly asking for a chance to stay with Aji. Although they knew the situation was very heavy, Aji’s spirit never dimmed.
Every time Aji gained consciousness, he would softly say, “I want to go to school…”
Amidst the unending pain, when Aji’s body appeared very weak, with very faint breaths, Aji’s mother began whispering dhikr in his ear: “Laa ilaaha illallaah… Laa ilaaha illallaah… Laa ilaaha illallaah…”
This went on repeatedly, with tears endlessly streaming down her cheeks. Until one day, Aji said, “Mom, I’m not ready to die. I just feel weak.”
Despite his often-sick condition, Aji managed to graduate from elementary school. He frequently fainted at school or couldn’t attend due to illness; his sick leave notes were countless. By the time he finished elementary school, Aji had already undergone nine surgeries related to the fluid in his brain.
His middle and high school years felt like a beautiful journey. Aji grew healthier. Though he still made hospital visits occasionally, everything was relatively fine. Until one day, shortly after Aji graduated from high school and completed the entrance exams for college, he suddenly fainted, collapsing in a weak state. They immediately rushed him back to the hospital for numerous examinations.
The MRI results revealed a tumor in Aji’s brain stem. The doctor explained that this was likely the cause of Aji’s ongoing health issues. There was a tumor adhering there, measuring 0.8 cm in the area known as the pineal gland, above the brain stem.
Although the size of the brain tumor was relatively small, it was still significant for the brain stem. However, because of its location, the doctors in Surabaya were hesitant to operate.
Unexpectedly, Aji passed the college entrance exam and was accepted into the Electrical Engineering program at ITS. His condition fluctuated, requiring his father to drive him to and from college from their home in Gunung Sari.
Over time, his condition deteriorated. Eventually, his doctor recommended that Aji be referred to a major hospital in Jakarta.
At the Jakarta hospital, Aji underwent radiation therapy. Initially, the results were quite good, with the tumor size decreasing. A million hopes were beautifully rekindled.
However, this happiness was short-lived. One day, Aji lost consciousness again. The MRI results indicated that the previously shrunk tumor had spread to the brain stem, thalamus (the brain’s center), and the part of the brain responsible for vision. The entire medical team panicked. Aji’s parents were engulfed in anxiety and intense fear. The doctors held an emergency meeting for more than three hours but couldn’t reach a conclusion.
Aji’s condition worsened without any solutions. He was taken back home to Surabaya.
Aji’s eye bags drooped from exhaustion, pulled down by the tumor mass that had invaded his vision center. His memory came and went, reminding him of his elderly grandparents.
One day, Aji requested a burger. Before he could finish the meal, he suddenly stared at the burger in his hand with a disgusted expression: “What is this?” he shouted angrily. “Why does it smell so bad?” he exclaimed, pushing the food far away from him. Yet he had asked his father to buy it for him. But then he forgot.
Aji’s parents needed endless patience to deal with him. One day, Aji’s father was advised by the medical team to see a very renowned neurosurgeon who usually handled cases like Aji’s.
However, to get an appointment with that specialist, they had to wait three months, and Aji needed to return to Jakarta. His condition was deteriorating, and his vision was almost gone. This saddened him the most because he could no longer read, especially for his studies.
His determination to heal was immense because he wanted to be able to go to college again. So, despite the long wait and the grueling journey by plane from Surabaya to Jakarta, with his nearly blind state, he persevered, accompanied by his parents.
After three months of waiting, at the end of 2012, the long-awaited meeting finally took place. But the doctor’s answer shattered all his hopes.
“You don’t need to want so much. Forget about college,” said the neurosurgeon.
“It’s better to learn to sing; many can sing even if they can’t see, like Stevie Wonder.”
Aji was, of course, deeply disappointed to hear that. But for his brain cancer case, medically, there was no solution.
Aji loved to engage with pens and lined paper. He was a child who always yearned for books. He loved digging into knowledge.
Everyone has dreams, but not everyone has the high spirit to achieve them. What made him most despairing was not being able to read anymore.
In the despair of both Aji and his parents, the three of them returned to the lodging at his uncle’s house in Bintaro, Tangerang. They had planned to return to Surabaya the next morning.
That night, his uncle shared a flyer about a new treatment involving a vest and helmet at a place in Alam Sutera, not far from where they were staying. Aji’s father had heard about this treatment method discussed by Dr. Warsito at the mosque near their home.
However, Aji’s father strongly refused to take Aji to that unclear practice. Only Aji’s mother requested that they at least try to find out more. She promised that if it turned out to be a witch doctor practice, they would return home.
Reluctantly, Aji’s father finally took Aji and his mother to the cancer research clinic in Alam Sutera, Tangerang.
“You just go in; I don’t want to go in,” he said to his wife.
Why waste time at a place like this, he thought, when even the top neurosurgeons had no solutions. His wife eventually consulted inside with Aji while her husband waited outside.
Aji was scheduled for a consultation the next morning. They were told to return the following day with the latest MRI results from the hospital, which would be studied.
The next day, they returned with the MRI results.
The clinic consultant examined Aji’s brain MRI and then designed a device for his head, measuring Aji’s head. After a series of tests and a lengthy wait, Aji finally received the ECCT device that afternoon. They immediately headed to the airport to return to Surabaya with newfound hope.
Upon arriving home in Surabaya, it was almost midnight. Aji immediately wore the head covering device while sleeping.
“The pain is unbearable,” he said, describing the headache he felt when wearing the device.
But due to his strong desire to recover, he continued using it. “I don’t want to die without trying. It’s a sin if I die without making an effort first.”
For two days, Aji battled through the pain while wearing the device. Gradually, the intense headache he initially felt began to diminish and eventually disappeared. When he picked up the Quran again, he was surprised to find that he could see the verses clearly.
Seeing Aji able to see again, his father became curious: “Could it be that this device really works?” he thought. His father handed Aji a large Quran that he usually read, encouraging him to try to read it.
“No need; I can read this one,” Aji rejected while continuing to read the Quran.
Despite his lingering doubts, his father began to acknowledge the efficacy of the black helmet device connected to a small box containing two AA batteries.
After thirteen years of enduring surgeries, hospitals, and living between life and death, just two nights after using the device, Aji began to see the light at the end of the dark tunnel he had been in, and he could read the Quran again after three months of complete darkness.
Two years later, his MRI results showed he was free of tumors, and he returned to campus to continue his studies. Two years after returning to college, Aji graduated and was conferred a degree in electrical engineering from the Sepuluh Nopember Institute of Technology (ITS) in Surabaya.
At his graduation, he had officially been a brain cancer survivor for five years since he was first diagnosed with cancer in early 2012.
He not only regained his sight but also completed his education at one of the best universities in the country, in one of the toughest majors.
In September 2022, ten years since Aji first lost his vision, he longed to see the Suramadu Bridge. The last time he saw it was in high school when he rode his bike there before fainting and being diagnosed with a brain stem tumor. Dr. Warsito came directly from Jakarta to accompany him.
Ten years reminiscing about a childhood that nearly vanished due to illness. The Suramadu Bridge stretching over the sea seemed to sing the lyrics of Stevie Wonder’s song that helped him not lose hope in life and rediscover the dreams that once faded:
You are the sunshine of my life,
That’s why I’ll always be around.
You are the apple of my eye,
Forever you’ll stay in my heart.
—Stevie Wonder
About ECCT:
https://c-techlabs.com/electro-capacitive-cancer-therapy-ecct-devices/