Stories

This may be hard to read, but this is our reality.

When I look back at the past ten years of my life, it feels as if grief arrived in waves, never fully receding before the next one struck. During that time, my mum was in remission from lymphoma, then my husband, Joe, suffered a brain haemorrhage and endured two emergency hospital admissions during his recovery. Soon after, my father passed away after more than ten years living with the effects of a stroke and heart disease. Not long after that, my mother contracted pneumonia that lasted for several exhausting months.

Yet nothing—absolutely nothing—prepared us for what happened in September 2023.

This is the story of our daughter, Katelyn Chew Kai En, who was just nine years old.



One evening after church, while driving home, Katelyn suddenly told us she had a very bad headache and felt nauseous. The headlights from oncoming cars made her pain worse. She shut her eyes tightly, groaning and crying as we tried desperately to comfort her during the journey. Her brother Kayson sat quietly, his eyes fixed on his sister, worry written all over his face.

Just weeks earlier, I thought Katelyn was just making funny faces. Instead, a paediatric doctor suspected Bell’s Palsy, a facial paralysis that affected the left side of her face. Soon after, her hearing on the same side became abnormal. One day, while speaking to her on the phone, she said to me, “Mummy, you sound strange, like a robot.”

An MRI was suggested because of her sensitivity to light.

When the MRI results came back, the paediatric neurologist approached us with a troubled expression. “The scan doesn’t look good,” he said quietly, asking us to view the images immediately. As we stared at the scan under the harsh fluorescent lights, he told us words that would forever divide our lives into before and after. 



“We are so sorry to tell you this, but the scan shows a tumour at the brain stem. Given the location of the lesion in the pons, it is highly likely to be a rare brain tumour called Diffuse Intrinsic Pontine Glioma (DIPG).”

Everything after that became a blur. My head spun. After the doctor left, Joe and I sank to the ground, sobbing.

“What? No. This can’t be true.”
“God, why is this happening?”
“She’s just a child—why her?”

We sought a second opinion from another Neuro doctor, hoping desperately for a mistake. But he confirmed the same diagnosis, shaking his head even before speaking and then he offered to pray for us.

The next agonising decision was whether to proceed with a biopsy. The procedure was extremely risky—requiring a needle to be inserted through her skull into the brain stem. Opinions among doctors were divided. She was only nine. Were we endangering her even more? 



We reached out to our church prayer sisters, Cynthia, Lee Luang, and Sophia, who prayed fervently and stood by us every step of the way. By God’s grace, Katelyn came out of surgery safely. The biopsy confirmed our worst fear: DIPG, the deadliest childhood brain tumour—rare, highly aggressive, and inoperable because it was intertwined with vital brain tissue.

The paediatric oncologist spoke gently but firmly. Katelyn had six to nine months to live. There is no cure. Radiation could perhaps extend her life by weeks or months, if we were fortunate.

We were told to go home and “make memories.”

We sat in the car afterward, speechless, crying. 

From that moment on, every week became a desperate race to find something, anything that could save her. Across Singapore, every paediatric neuro told us the same devastating truth: there was no cure.

One doctor even blunty urged us to start looking for a wheelchair, telling us Katelyn would eventually lose the ability to walk. We refused to accept that. We clung stubbornly to hope, unwilling to let anyone crush it.

We couldn’t bring ourselves to tell Katelyn her prognosis. We feared extinguishing the joy and hope in her heart. During one visit to the Children’s Haematology and Cancer Clinic, she asked softly, “Am I having cancer?” I explained that tumours and cancers often need similar treatments. Inside, I felt like I was breaking as a mother.

Watching our once spritely, intelligent, joyful nine-year-old slowly lose her abilities barely a month after finishing thirty radiation sessions courageously - it was soul-crushing. At times, we felt we had failed her.

In her book of feelings, Katelyn wrote this when asked what her 3 wishes were:
“To get good exam marks”

“Help me and my family all be healthy”

“Make me able to run and jump again.”

That broke me.

No clinical trials were available in Singapore. Options overseas in the U.S., China, Thailand, Australia, and Europe were limited and expensive, often unavailable to foreigners, and offered little promise. We were running out of time.

We prayed. Our close church friends and even strangers approached Katelyn and prayed.

God opened a door in Germany. While I stayed behind to care for Katelyn’s daily needs, Joe travelled alone every three months to Germany to purchase a trial medication for DIPG patients shown to maybe extend life by a few months. It was expensive, but it was better than nothing. We were desperate.

Katelyn’s mind stayed sharp and witty, but she was trapped in a body that was slowly failing. Her hearing deteriorated, then her right hand, left leg, her sight, her speech and eventually her smile. Finally, we could only tell her feelings through the expression of her eyes.

One day she told me, “Mummy, I want a smile like yours.”

I told her she would get it back someday, even though my heart felt terribly heavy.

Joe spent countless nights researching medical journals, contacting other parents, chasing any sliver of hope. Meanwhile, we tried to stay cheerful in front of Katelyn while silently battling the relentless prognosis in our minds.

Katelyn shared that she had encountered Jesus several times. Once, during a hospital stay, she told me calmly that she could see Jesus at the foot of her bed, massaging her feet and keeping her warm. Another time at home, she said He held her feet until she fell asleep. In her final months, when she could no longer speak, I saw it in her eyes.

“Is Jesus here?” I asked. She blinked—yes.

Katelyn loved Jesus deeply. She served faithfully with me and her best friend Chloe, singing in worship. We planned for one service but she wanted to stay for two more. Despite difficulty walking, she insisted on singing for the Lord. She wore a splint on her left leg; people thought she had a simple injury.

I wished that were true.

She loved food, especially while on steroids, but soon swallowing became dangerous. Soft foods, then later to feeding through a nasogastric (NG) tube. Her condition deteriorated rapidly in the final months.

Our daily prayer remained unchanged:
“Dear Lord, please heal Katelyn from the top of her head to the bottom of her feet. Destroy the tumour in her brain.”

One day, when I was preparing Katelyn’s milk feed and medicine next to her bedside, I cried out to God in my heart, “God, can you hear me? Where are you? We are drained, tired and really sad, we need a cure fast. You are a God who heals so please heal Katelyn and bring her out of this misery!” Joe and I would have moments of grief where the tears just flowed as we watched her sleep. Many times when we felt alone walking in this painful and depressing journey, I couldn’t hear God’s voice but He responded by sending His angels on earth to comfort and support us in many more ways than one. 

Katelyn endured unimaginable pain, agonising wound dressings three times a week for steroid-induced wounds measuring up to 9cm by 4cm, sudden full-body spasms, and the anguish of being unable to speak or explain her pain, yet still with a sharp mind.

Yet she never showed anger toward us. She trusted that we were doing the best we could to help her. Through her suffering, she taught me what resilience, patience, and long-suffering truly meant - Like her motto goes “You gotta do what you gotta do.”

Yet week after week, she worsened. One night, as I prepared to pray with her, she shook her head—disappointed, weary. She didn’t want prayer anymore. I was concerned. Still, we pressed on, clinging to faith even when it felt fragile. Psalms 121 was given to us by a few people on different days. God was comforting us.

After our church pastor’s son, John Calvin, shared Katelyn’s story with the Mt Carmel Church congregation, Joe and I watched the sermon with Katelyn through the hospital television. That evening, after all the visitors left, she suffered a silent seizure. A CT scan revealed massive tumour progression. Doctors told us that there was nothing they could do and so discussion began with the palliative doctor. 

On 3 February 2025, surrounded by family, godparents, teachers, church friends, and loved ones as I sang the same worship songs I sang to her as a baby to sleep, Katelyn took her last breath. Kayson ran through the hospital corridor to see his sister moments after she passed. He hugged her and wept continuously. Katelyn fought for fifteen months,  far beyond the doctors’ predictions. She celebrated her 11th birthday on 1 December 2024, spent Christmas eve in hospital, 2025 New Year’s at home, and Chinese New Year in ICU. 

We were always a family of four. Now, living as three feels unbearably different. However, when people ask how many children we have, we still answer, “Two.”

Kayson told us a few months after Katelyn left us, “I wish I didn’t have to be an only child. It gets lonely.” God knew his heart and through our church community, they connected us to a Kampung Football club for kids led by Coach El, where Kayson found friendship and healing and so did we.

Month of May is Brain Tumour Awareness Month. Please remember families walking this road. Help may come through prayer, research funding, practical aid, or simply being present.

Joe and I continue serving in our church worship ministry, singing and playing bass, allowing God to refill what has been emptied. We are ever so thankful for all the help and support God has blessed us with during our struggles.

Battle Belongs by Phil Wickham now carries a meaning we never imagined.

We have surrendered the battle and our precious Katelyn into God’s eternal care. We visit her weekly, praying in the quiet green stillness. We miss her every day. Yet God has given us a peace beyond understanding and the assurance that one day, we will be reunited again.

We look forward to that day.