This is the story of a 9-month-old child diagnosed with a tumor in the brain’s nerve center (choroid plexus). Initially unable to lift his head or move his legs, he eventually stood up and began to walk after using ECCT. Over 10 years, he grew into a teenager who could attend school like any other child.
Taqi’s story was written to commemorate World Childhood Cancer Day on February 15, 2021.
BIG-HEADED BOY, THE BREAKER OF GREAT SPIRIT
“When Taqi’s room companion didn’t show up for the second radiation appointment, I tried to contact their parents,” said Mr. Sulistiyo, Taqi’s father.
“It turned out that the child had passed away a few days earlier.”
What parent wouldn’t feel their heart sink upon hearing such news? Especially when, not long after that incident, another child undergoing treatment also passed away.
No human can escape death. No matter how far we go, even hiding behind thick walls, death will always come.
Taqi’s parents never expected their tiny baby to face such a heavy burden—living side-by-side with a tumor. At that time, baby Taqi was undergoing the routine measles immunization. Usually, Taqi’s body would be hot for a few days as a common reaction post-immunization. But this time, his fever lasted over a week and did not subside. Taqi, who usually was not fussy, cried continuously.
“Out of worry, we took him to the pediatrician,” said Taqi’s parents.
The doctor said nothing was wrong, even noting Taqi’s relatively large head and suggesting that he would grow up to be smart. Taqi’s parents happily accepted the doctor’s opinion.
However, a few days later, Taqi had seizures followed by his eyes becoming crossed. His parents immediately took him back to the pediatrician, who then referred them to a neurologist. The neurologist recommended a CT scan to uncover Taqi’s true condition.
The CT scan results were shocking: Taqi had a tumor in his brain, precisely at the center of the brain where cerebrospinal fluid is produced—a choroid plexus tumor. This caused excessive fluid production, leading to hydrocephalus, a condition in which the head size greatly exceeds average due to fluid buildup in the brain. Suddenly, the room felt small and suffocating to Taqi’s parents.
They looked at Taqi with deep sorrow.
At that time, Taqi was only nine months old—a stage where babies are supposed to be at their cutest. But there was no babbling or playful sounds typical of babies. Taqi lay helpless, trapped by the tormenting grip of the brain tumor.
Children are a source of joy for their parents, the embodiment of love and affection. Nothing could stop them from doing whatever it took to relieve the suffering of their beloved child.
Taqi was referred to a large hospital for further treatment, and his parents began long days in hospital corridors. After all the necessary examinations, doctors scheduled surgery. In their ignorance and helplessness, Taqi’s parents left everything in the hands of the doctors.
“We just wanted Taqi to get better,” recalled Mr. Sulistiyo, Taqi’s father. “We didn’t know what else to do except surrender to the doctors.”
Throughout the surgery, prayers never left their lips. They knew this was when they needed HIS help the most. Every hour felt like an eternity.
At just one year old, little Taqi faced the operating table, risking his life. The first surgery was to insert a shunt to drain the excess brain fluid. The second surgery was to remove part of the tumor mass from the central gland producing cerebrospinal fluid. The operation could not be completed in one go due to its proximity to the brain’s nerve center.
But the journey to recovery did not end there. Taqi still had to undergo radiation as part of his healing process, as only a small portion of the tumor could be removed due to its location at the nerve center.
However, seeing others who were also undergoing treatment dampened Taqi’s parents’ spirits.
“We felt like we were wandering around a dark, endless tunnel, unable to find a way out.”
At that time, Taqi’s parents were completely clueless about what to do. They tried everything for Taqi’s recovery, even things that seemed illogical, all as an effort to heal.
Life is uncertain; we never know what will happen or how much time we have left. But as humans, we are obliged to strive for something better.
“While waiting in the hospital, I happened to see an interview with Dr. Warsito on TV discussing ECCT. I felt that this was the answer to our long prayers,” recalled Mr. Sulistiyo upon first learning about ECCT.
Even though the information they received was still unclear, they felt hopeful that ECCT had to be the choice. It was like seeing a lantern illuminating the dark tunnel they were in.
Without much consideration, they rushed toward this hope that was almost lost. Although they did not fully understand how the device worked, they believed it was the solution to Taqi’s better future.
Taqi eventually received the ECCT device, and his scheduled radiation was canceled.
Shortly after starting ECCT therapy, Taqi’s condition gradually improved. He was able to lift his large head. Since their house didn’t have air conditioning, they had to install a cooling system as Taqi sweated a lot and felt overheated while wearing the head-cover-shaped ECCT device.
Initially, Taqi developed red, heat-rash-like spots due to excessive sweating. But over time, his condition continued to improve. His previously crossed eyes began to return to normal, and his weak arms and legs gained strength. Within a few months of using the device, Taqi could sit up independently.
ECCT slowly led them out of the darkness. Truly, Allah has mysterious ways of showing His works.
“We still regularly take Taqi to the hospital for check-ups, just to match the clinic’s examination results with those at the hospital,” said Taqi’s parents. “It also reassures us that we’re on the right path.” Each year’s CT scan showed a shrinking tumor mass, and the excess fluid in his brain gradually decreased.
Eight years have passed since the initial brain tumor diagnosis. At the age of 9, Taqi is now an active and talkative child, running around and playing with his friends at school.
In life, the most important thing is to have hope and pursue it tirelessly until it comes true. No matter how complicated or difficult life may be, everything will eventually pass with time. Sometimes difficulties serve as a sign to take the first step.
Just as Taqi’s parents did. After months, even years of dealing with hospitals, they met many others who were suffering far more than they were. Every hardship brings good for those with big hearts, allowing us to understand others’ pain better than before and making us more resilient against disappointment.
Taqi’s parents started helping those around them who were struggling. They reached out to benefactors to ease the burden of their brothers and sisters. Although doubts sometimes arose about their efforts, seeing the suffering of others always compelled them to help.
Sometimes we lose motivation when facing rejection from those around us. We may wonder if we’re unworthy of doing this or if we should change ourselves to fit societal expectations.
However, they never wanted to fail in helping others and always fought to succeed with all their strength and capabilities. If we have the will, we will find a way.
Everyone has something to offer to the world, even if it’s just a small step. Let’s do what we can, with what we have, wherever we are. If we want to do it, we can. We are alive, we are here, so let’s act now.
Love and kindness are never wasted. They always bring change, blessings to the recipient, and blessings to the giver. We may not have much, but we can always have enough. This is a feeling known only to those who are grateful.
[THIS STORY WAS WRITTEN TO COMMEMORATE WORLD CHILDHOOD CANCER DAY]
Lampung, February 15, 2021.