Lulu

Lulu, a bright and cheerful girl, is the youngest of two siblings and has a passion for dancing—especially when she thinks no one’s watching! Her mother reflects on their journey, from the moment of Lulu’s diagnosis to the day she completed her treatment:

The Symptoms
It was during Ramadan when Lulu’s health began to take a worrying turn. She started having intermittent fevers and complained of pain in her legs, particularly around her knees. Standing became difficult, and soon, she needed to be carried everywhere. Her once rosy complexion turned unusually pale, and we grew increasingly concerned.

We decided to take Lulu to Hospital Sibu. By the time we arrived, her condition had worsened alarmingly. Lulu was semi-conscious when admitted to the Emergency Department on April 25, 2024. The doctors gravely informed us that her chances of survival were only 50/50.

After an initial examination, the doctors recommended that Lulu be transferred to Sarawak General Hospital (SGH) in Kuching for a more thorough diagnosis. Without delay, we boarded the next flight to Kuching, accompanied by a nurse. It was our first time on an airplane and our first visit to Kuching—a journey we never imagined would be under such distressing circumstances.

Diagnosis and Start of Treatment
At SGH, Lulu was admitted to the Paediatric Oncology Ward 2A. The doctors performed a bone marrow aspiration (also known as bone marrow biopsy, this medical procedure shows whether the bone marrow is healthy and making normal amounts of blood cells), and on 29 April 2024, our worst fears were confirmed: my three-year-old daughter had Acute Lymphoblastic Leukaemia (ALL).

Hearing the diagnosis was a shock. I couldn’t comprehend how someone as young as Lulu could have cancer. I had always believed cancer was something that affected adults or had a genetic basis. But Lulu had no family history of cancer, making it even harder to process.

Initially, I thought we could return to Sibu after the diagnosis, but the reality was far from what I’d hoped. Lulu needed to begin chemotherapy immediately, which meant staying in Kuching for several months. The thought of being away from my family for so long, especially when we did not even get the chance to say goodbye to Lulu’s older brother and the rest of the family.

A Difficult Journey
The first few days in the isolation room were especially tough. The loneliness was overwhelming, and I was anxious about how we’d manage for the months ahead. Renting a place near the hospital was far too expensive, and I feared we’d have no choice but to stay in the hospital ward throughout Lulu’s treatment.

On top of grappling with Lulu’s diagnosis, I struggled to adjust to the new demands of caring for her. Her weakened immune system required a sterile environment, and I had to be vigilant to make sure her space was as hygienic as possible to prevent infections.

As part of her treatment, Lulu was prescribed dexamethasone, a medication with challenging side effects. She became moody, often refusing to wake up for appointments or shower. Her appetite surged, and she would throw her phone in frustration when upset.

Finding Strength in the Community
Gradually, we began adapting to this new chapter of our lives. At the hospital, I met other parents whose children were also battling leukemia, and I found solace in their shared experiences. I embraced ‘redha’. In Malay, ‘redha’ conveys a deep sense of peaceful acceptance, often in the face of hardship, trusting in a higher purpose or wisdom. One is able to let go of the situation gracefully and embrace what is to come.

During this time, we were introduced to the Sarawak Children’s Cancer Society (SCCS). They provided us with a place to stay at their Halfway Home Centre, which became a sanctuary for us. The centre offered more than just accommodation—it covered our meals, provided a kitchen, and even arranged transportation to and from the hospital. Their support alleviated many of my worries, and I felt immense gratitude for their holistic care.

At the centre, Lulu found a sense of normalcy. Lulu and I made friends with the residents staying at the centre, and we supported each other in our journeys. Lulu developed a daily routine: – waking up, attending her doctor’s appointment at the hospital, coming back to the centre, playing with the kids at the centre (especially Aqil, another fellow patient), napping, eating and then going to sleep.  

When we first arrived, Lulu was shy and withdrawn. Over time, she blossomed into a cheerful, outgoing child, opening up to the teachers at the centre and making friends with other patients at the ward. Lulu loved playing ball with her new-found friends at the centre, or playing with cooking toys at the centre’s playroom.

On the Road to Recovery
After six months of treatment, in November 2024, we received the news we had been longing for: Lulu’s treatment was complete, and we could finally return to Sibu. Lulu’s father came to Kuching to bring her home, a reunion that was both emotional and heartwarming.

Trisha, an SCCS Support team member, recalled the heartfelt moment: “Her dad hadn’t seen Lulu in six months and burst into tears when he saw her. Even Aqil, her best friend at the centre, or should I say ‘frenemy’, Aqil, was barely able to hold back his tears. Aqil was just a year younger than her, and you’d often hear the two bicker, though they made up with each before she left. ”

“Lulu is so adorable, and loves to dance. Her mum always took videos of her dancing and having fun, her favourite song is APT,” continued Trisha.

Today, Lulu’s condition is stable, though she continues to have follow-up appointments at Hospital Sibu. The SCCS Support Team will be meeting them again in their next Sibu Clinic Day visit, following up with them on their latest updates.

To all parents navigating this challenging journey, Mak Lulu shares a heartfelt message of encouragement: “Stay strong and courageous as we face life’s trials.”

SARAWAK CHILDREN'S CANCER SOCIETY