Jessie

Jessie, a gentle and resilient young girl from Sarikei, was diagnosed with Stage 4 Neuroblastoma cancer at the tender age of 3 years and 11 months. Her mother recounts their journey of receiving treatment spanning over a year: 

The Early Symptoms 
As the youngest among our four children, Jessie was a bundle of joy who lit up our home with her infectious laughter and adored playing football with her friends. However, our world began to turn upside down one February day in 2023 when Jessie complained of leg pain and difficulty with bowel movements.

Concerned, I rushed her to a hospital in Sarikei, where an X-ray revealed a troubling accumulation of faeces in her body. Despite this alarming finding, we were sent back home.

Determined to seek answers, I took Jessie to another hospital in Daro. There, the doctor suspected anaemia stemming from a shortage of red blood cells. With mounting worry, we were referred to Sibu Hospital, where the grim possibility of cancer loomed over us, though the exact type remained uncertain. We were immediately referred to Sarawak General Hospital (SGH) in Kuching for further testing.

Diagnosis and Start of Treatment
Once there, we received the heartbreaking news that Jessie had been diagnosed with Neuroblastoma (NB), a rare type of cancer that develops from immature nerve cells. In April 2023, one week before Hari Raya, Jessie underwent a CT scan as a routine for all new patients to examine where the cancer was mostly concentrated. Subsequently, she was inserted with a central venous line (CVL) and started her chemotherapy treatment.

In July 2023, Jessie underwent her first operation in the abdomen to remove the cancer tumour at Hospital Tunku Azizah. In October of that same year, we arrived in Kuala Lumpur to undergo a bone marrow transplant at Hospital Universiti Kebangsaan Malaysia (HUKM). 

Jessie’s medical journey in KL was supported through the CANSupport digital initiative, a collaboration between Tata Consultancy Services, National Cancer Society Malaysia (NCSM) and Malaysia Aviation Group (MAG), in which Malaysia Airlines sponsored their Kuching-KL flight tickets and KLIA Ekspres and Grab sponsored the local transportation. Jessie and her parents also stayed at NCSM Children’s Home of Hope for the entire period of her treatment in KL.

Currently, Jessie has started her immunotherapy treatment, where she is scheduled to receive 5 doses in total. Each dose will take about 10 days of administration, followed by a rest period of around 3 weeks. 

The Treatment Journey
Having been away from our family since the start of Jessie’s treatment in April 2023 was tough. I remember feeling very dispirited to be away from my family. In the midst of taking care of Jessie, I also worried for my three other children (ages 14, 15 & 16) who were waiting for us back home. I miss them dearly.

At first, I felt utterly bewildered by the treatment options for Jessie’s condition, especially since our family had no prior experience with cancer. The uncertainty surrounding her diagnosis filled me with deep concern, propelling me to do my best to follow the doctor’s instructions so she could recover as soon as possible. 

Jessie’s body was weakened throughout the course of her treatment. She had no appetite and wasn’t very willing to eat. She didn’t even want milk as she couldn’t stand the smell of it through her feeding tube. We had to change brands multiple times till we found the right one that best suited her.  

Throughout her treatment journey, I noticed a shift in Jessie’s demeanour. She had become very quiet, mostly keeping to herself inside her room. 

Finding Support Amidst Adversity
I constantly remind myself to stay resilient, especially for the sake of my child. During our time at SGH, I found solace in connecting with other caregivers in the pediatric ward, all navigating their own journeys with children battling cancer.

The unwavering support from both SCCS staff and our family has been our anchor through this storm. SCCS not only provided us with a place to stay in Kuching but also extended invaluable assistance with medical expenses, transportation to and from the hospital, and essential sponsorships for Jessie’s treatments. Despite the miles between us, Jessie’s father’s words of encouragement echoed in our hearts every time we called home, reminding us not to lose hope. Even the medical team assured us of Jessie’s fighting chance for recovery.

Though witnessing Jessie’s struggles weighs heavily on my heart, I’ve learned to find strength in her resilience. Understanding the magnitude of her ordeal, I’ve refrained from overwhelming her, instead offering my support in quieter ways. From preparing her meals to staying by her side as she adjusts to her new reality, I’ve become her constant companion in this journey. 

To anyone else who finds themselves in my shoes, “It’s natural to feel weak when your child is vulnerable. Don’t give up and stay strong.”

SCCS’ Support
Besides offering shelter, daily necessities, food, PET scans, flight tickets, transportation to and from Sarawak General Hospital (SGH), and financial and medical aid, SCCS Kuching Halfway Home also covered the full costs of all essential lab tests and scans for Jessie before her transplant in Kuala Lumpur.

As of February 2024, SCCS has sponsored over RM320,000 for Jessie, including her ongoing immunotherapy treatment at Sarawak General Hospital, to ensure she has the best chance of survival.

Jessie’s immunotherapy treatment is due to be completed in June 2024. Once completed, Jessie and her mother may return home.

SARAWAK CHILDREN'S CANCER SOCIETY