MIDDLE school often symbolises youth and endless possibilities, filled with after-school activities, late-night study sessions, and the anticipation of school holidays.
Yet for Daniel Kueh, a 15-year-old boy from Kuching, these carefree days were unreachable due to his life-altering cancer diagnosis.
Kueh, only 14 at the time of his diagnosis, has always been adored for his friendly personality. Most people who have met him often described him as an active and outgoing young boy – polite, helpful and very playful.
Discovery of Diagnosis
In early 2023, Kueh’s arms, groin and legs were riddled with red spots, similar to the symptoms of dengue fever.
His parents immediately brought him to a clinic to get examined and get his blood work done, not wanting to take any risks.
In May 2023, he and his family were faced with the devastating news that Kueh, their youngest child, was diagnosed with T-cell Acute Lymphoblastic Leukaemia, or T Lymphoblastic Leukaemia (T-ALL).
T-ALL is an uncommon and aggressive subtype of Acute Lymphoblastic Leukaemia (ALL) in which too many T-cells are produced in the bone marrow and are immature and abnormally shaped.
In large numbers, they also prevent the body from making the other blood cells your body needs.
Soon after the discovery, he started chemotherapy. Throughout his treatment regime, he had to undergo various medical procedures including IV drips, platelets transfusion, blood infusion, intrathecal administration (also known as IT, a route of administration for medicines via an injection into the spinal canal) and Hickman Line (or central venous line) insertion.
An Arduous Treatment Journey
The doctors informed his parents that he needed a stem cell transplant as he was at a high risk of relapsing after completing his chemotherapy.
Worse, none of his family members was a match, hence, the search for a suitable donor was expanded outside of Malaysia at an additional cost, and thankfully, one was found in Singapore.
To prepare for the impending transplant, Kueh underwent another six sessions of radiotherapy and additional rounds of chemotherapy.
Throughout this process, he continued to receive platelets transfusion, blood infusion, IV drips and antibiotics.
On Mar 26 this year, Kueh received the stem cell transplant at Ampang Hospital, Selangor.
As the donor was not a perfect match, he needed to be closely monitored for many weeks following the transplant.
He encountered some side effects, such as mouth ulcers, sore throat, skin rashes, fatigue, diarrhoea and graft-versus-host disease (GVHD, a systemic disorder that occurs when the graft’s immune cells recognise the host as foreign and attack the recipient’s body cells).
Focusing on the Positives
Throughout this journey, his mother recounts being grateful that both she and her husband were able to maintain employment and provide for Kueh’s needs.
During his treatment, his aunt and father were the primary caregivers.
His mother recounts how her son’s comforting words encouraged her during the trying times.
“I couldn’t help but sympathise with my son. Yet despite the daunting process, he never once showed signs of being discouraged, always maintaining an upbeat attitude with a steadfast belief in his recovery,” she said.
The family are incredibly grateful for the unwavering support, love, and encouragement of their friends, family, church community, and medical team that gave them the strength to persevere through this challenging chapter.
Support from the Community
Staff at Sarawak Children’s Cancer Society (SCCS) who have met Kueh recalled lovely conversations with him.
“He was always optimistic, never allowing his condition to dampen his spirits. To him, it was only a matter of time – always speaking with such faith about what he wants to do after he recovers, or when he’s going back to school to see his friends again.
“During the Lunar New Year, he would invite his friends over to visit him and participate in church activities if he could. I also love hearing him read out loud whenever he’s at the ward,” said SCCS Support Services Manager Ming Ming.
SCCS supported his treatment costs totalling over RM130,000 for the stem cell transplant and lab tests performed at both Sarawak General Hospital (SGH) in Kuching and Ampang Hospital in Selangor.
Additionally, the SCCS Support Team were in frequent contact with the family, providing words of encouragement and support to cheer them on and Kueh has been exhibiting remarkable progress.
Presently, Kueh and his mother are staying in an apartment arranged by the hospital and will need to stay there till June for weekly follow-ups at Ampang Hospital, after which he may be allowed to be discharged from the ward.
His white blood count level has been continuously rising ever since the transplant, showing astounding improvements in all his tests and results.
“His amazing resilience was incredibly encouraging to see. I’m beyond thankful knowing that my son’s condition is looking up,” his mother said.
During this entire ordeal, his mother encouraged him to journal, seeing his story as a source of inspiration that can help many others going through similar journeys.
GoBald 2024
For the GoBald 2024 on June 30, SCCS said that Sarawak General Hospital (SGH) Paediatric Haematologist and Oncologist Dr. Tan Wee Nee, will participate in the event held in Kuching to raise funds and awareness for paediatric cancer.
Tan stated that her participation in the event is mainly because she wants to feel what her patients felt.
“I want to feel how my patients feel. Some of our patients are teenagers, who are at the age where physical appearance is important to them, much like any of us.
“They don’t fear chemotherapy as much, but more so the idea of going bald. I want to let them know that Dr Tan is accompanying you too, and that I am with you. As I join this event, I also want to encourage my friends and family to do it too,” she said.
Every year, SCCS supports about 150 to 200 families in Sarawak in their cancer-fighting journey, with their annual expenses rounding up to about RM2 million.
As a non-profit organisation, the support services provided by SCCS are primarily funded through public donations raised from its Monthly Donation Programme, Corporate Social Responsibility (CSR) projects and annual campaigns such as GoBald.
This year, GoBald aims to raise RM1 million and shave 500 heads under the theme ‘Beacon of Hope’, highlighting the crucial role of community support in the recovery journey of children with cancer.
Participants can register and choose to either raise funds, shave their heads, or both.
For more information and to register for GoBald, visit www.gobald.my. Businesses interested in Corporate Social Responsibility projects can contact SCCS at 082-686276 or email em1@sccs.org.my.
