Daniel’s positivity and resilience have made a strong impression on the SCCS staff as well as the medical team taking care of him throughout his cancer treatment journey. His parents recount his journey of receiving treatment after his diagnosis:
The Early Symptoms
The youngest of three siblings, Daniel has always been adored for his friendly personality. Most people who have met Daniel would often describe him as an active and outgoing young boy – polite, helpful and very playful! He loves Mala (a type of spicy-numb seasoning) or Chinese cuisine and enjoys outdoor activities, sports and playing musical instruments.
In early 2023, we were startled to see Daniel’s arms, groin and legs riddled with red spots, similar to the symptoms of Dengue fever. Immediately, we brought him to a clinic to get examined and get his blood work done, not wanting to take any risks.
Diagnosis and Start of Treatment
In May 2023, at only 14 years old, we were devastated to learn that our Daniel was diagnosed with T-cell Acute Lymphoblastic Leukaemia, or T Lymphoblastic Leukaemia (T-ALL).
T-ALL is an uncommon and aggressive sub-type of Acute Lymphoblastic Leukaemia (ALL). In T-ALL, too many T-cells are produced in the bone marrow and these T-cells are immature and abnormally shaped. They do not fight infections properly. Large numbers of these T-cells also prevent you from making the other blood cells your body needs.
Soon after, Daniel started chemotherapy. Throughout his treatment regime, he had to undergo various medical procedures including IV drips, platelets transfusion, blood infusion, 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.
Daniel remained resilient, though his cancer treatment journey did not end there. The doctors informed us that Daniel needed a stem cell transplant as he was at a high risk of relapsing after completing his chemotherapy. All we could do was pray, as none of our family members were a match. The search was expanded outside of Malaysia at an additional cost, and thankfully a suitable donor was found in Singapore.
Daniel underwent preparations for the impending transplant, including 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.
After the Stem Cell Transplant
As the donor was not a perfect match, Daniel has been under close monitoring for 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).
Despite these challenges, Daniel is exhibiting remarkable progress. Presently, Daniel and his aunt are staying in an apartment arranged by the hospital and will need to stay there for around three months for weekly follow-ups at Ampang Hospital, after which he may be allowed to be discharged from the ward.
Throughout this journey, we have been grateful to maintain our employment and provide for Daniel’s needs. While Daniel’s aunt and father have been primary caregivers during his treatment, I (Daniel’s mother) will take time off from work in May to join him in Selangor to be by his side.
As his mother, I couldn’t help but sympathise with my son. Despite the daunting process, Daniel never once showed signs of being discouraged, always maintaining an upbeat attitude with a steadfast belief in his recovery. We prayed and thanked God each day. It was through the unwavering support, love, and encouragement of our friends, family, church community, and medical team that we found the strength to persevere through this challenging chapter.
Each night, I always made sure to give Daniel a big hug and tell him how much I loved him. We’re each other’s buddies, and we believe that by keeping our spirits up and staying positive, things will surely look up.
SCCS’ Support
Staff at SCCS who have met Daniel recalled lovely conversations with him. Despite not seeing him around often, his positivity has 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.” – Ming Ming, SCCS Support Services Manager.
SCCS played a big role in improving Daniel’s treatment outcome by supporting the treatment costs at over RM130,000 for the stem cell transplant and lab tests performed at both Sarawak General Hospital in Kuching and Ampang Hospital in Selangor. Our family is so appreciative of the encouragement, support, love and commitment received from SCCS every step of the way.
Last year, my eldest sister, Michelle, my husband and I joined GoBald 2023, shaving our hair in support of Daniel, and all the other children going through this journey.
Road to Recovery
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.
During this entire ordeal, we encouraged Daniel to journal. We see his story as a source of inspiration for others, hoping it can help many others going through similar journeys.
“Pray hard and be thankful no matter the situation – what has happened cannot be changed but we can learn to accept and adapt with a positive mindset. Never blame God as everything happens for a reason. Don’t let go of hope, have a joyful heart and always be patient. Help is always available.”
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