KUCHING
25 MAY 2024
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 hailing from Kuching, Sarawak, these carefree days were interrupted by a life-altering cancer diagnosis.
Daniel, only 14 at the time of his diagnosis, has always been adored for his friendly personality. Most people who have met Daniel often described him as an active and outgoing young boy – polite, helpful and very playful. He enjoys Mala (a type of spicy-numb seasoning) or Chinese cuisine as well as outdoor activities, sports and playing musical instruments.
Discovery of Diagnosis
In early 2023, Daniel’s arms, groin and legs were riddled with red spots, similar to the symptoms of Dengue fever. Immediately, his parents 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 Daniel, 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, Daniel started chemotherapy. Throughout his treatment regime, he had to undergo various medical procedures including IV drips, platelet transfusions, blood infusions, intrathecal administration (a.k.a 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
Despite the rigorous treatment, Daniel’s resilience shone through. The doctors informed his parents that Daniel needed a stem cell transplant as he was at a high risk of relapsing after completing his chemotherapy. Worse so, none of his family members was a match. 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, Daniel 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 26 March 2024, Daniel received the stem cell transplant at Ampang Hospital, Selangor.
As the donor was not a perfect match, Daniel 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 & graft-versus-host disease (a.k.a 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, Daniel’s mother recounts being grateful that both she and her husband were able to maintain employment and provide for Daniel’s needs. During Daniel’s treatment, Daniel’s aunt and father were the primary caregivers.
During trying times, Daniel’s mother recounts how her son’s comforting words encouraged her, “I couldn’t help but sympathise with my son. Yet despite the daunting process, Daniel never once showed signs of being discouraged, always maintaining an upbeat attitude with a steadfast belief in his recovery.”
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 SCCS who have met Daniel recalled lovely conversations with him. His positivity left a lasting impression:
“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 Ming Ming, SCCS Support Services Manager.
SCCS supported Daniel’s 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.
Daniel has been exhibiting remarkable progress. Presently, Daniel 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.
Daniel’s white blood count level has been continuously rising ever since the transplant, showing astounding improvements in all his tests and results. While at the apartment, Daniel voluntarily makes his own breakfast and is never picky with food.
“His amazing resilience was incredibly encouraging to see. I’m beyond thankful knowing that my son’s condition is looking up,” Daniel’s mother said.
During this entire ordeal, his mother encouraged Daniel to journal, seeing his story as a source of inspiration that can help many others going through similar journeys.
GoBald 2024
Dr. Tan Wee Nee, a Paediatric Haematologist & Oncologist at SGH, will participate in the GoBald event on 30 June in Kuching to raise funds and awareness for paediatric cancer. Dr Tan aims to empathise with her patients, many of whom struggle with the impact of hair loss during treatment.
“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,” Dr Tan explained.
Daniel’s parents and his aunt, Michelle, also participated in GoBald 2023, demonstrating their support for him and other children fighting cancer.
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.
About Sarawak Children’s Cancer Society (SCCS)
Mission: To provide care and support for Malaysian children and their families who are suffering from childhood cancer in Sarawak.
The Sarawak Children’s Cancer Society is a non-profit organisation founded in November 2001, dedicated to meeting the needs of families of patients diagnosed with paediatric cancer in Sarawak irrespective of race, religion, age or gender. The SCCS committee is made up of 70% patients’ parents and 30% volunteers. The Society has supported more than 1,600 children since 2001.
Our Services
Support
Through counselling sessions, home visits, support programmes, youth and family camps, and informal friendships, SCCS provides emotional and moral support to members of its community. In 2023, SCCS provided more than 800 caring sessions and 64 counselling sessions to patients and families.
Accommodation
SCCS operates a 14-bedroom Children’s Cancer Centre (CCC) as a temporary living house for outstation patients, with full provision of food and amenities. Daily shuttle services are provided to and from the hospital. The home housed 37 families in 2023.
Financial Assistance
Caring for a child with cancer is beyond the means of most of the patients we serve. To families demonstrating financial need, SCCS provides monetary assistance through monthly financial subsidies, medical treatment not covered by the government and transport subsidies. 51 families received financial aid in 2023, amounting to a total of RM109,000 while monthly transport subsidies were provided to a total amount of over RM63,000 for 44 families.
Education
SCCS holds talks and campaigns to educate the public about cancer and the stigmas often attached to it. Educational and craft activities are also organised for the children to keep their minds off the treatment. SCCS also supports funding for medical staff training to allow them to provide better care for the patients. 34 medical staff received training supported by SCCS and saw over 6,400 attendees at their annual childhood cancer awareness event in 2023.
Recreation
SCCS organises outings, holiday camps, children’s parties and other activities for children and their families to heighten the spirit of the families. For children with cancer, each birthday is a victory. SCCS held birthday celebrations for 128 children at both the ward and the halfway home, in 2023.
Official Website: www.sccs.org.my
Facebook: fb.com/sccsmy
Instagram: @sccsmy
