Lawai

Lawai made a strong impression on the staff of SCCS when he first arrived, being only 10 months old when he was diagnosed. The staff recounted him as being a very active child who wasn’t fussy at all, always moving around even before he learned to walk. His mother recounts their story: 

The Early Symptoms 
Lawai had been in and out of the hospital for follow-ups ever since he was one month old. There was a small lump behind his shoulder and doctors diagnosed it as a dermoid cyst. They said there was nothing to worry about and the lump eventually resolved on its own.

Unfortunately, within a few months, a new, 10-cent-sized lump appeared on his upper left eye. We brought him to get an MRI scan on 28 February 2023. In just one month, the lump rapidly increased in size, spreading to his cheek, jaw area and the back of his ears. Towards the end of February, we met with a specialist at Miri Hospital and were told that the lump was worrying. Dr. Lee Jia Ni contacted Sarawak General Hospital (SGH) and informed them about Lawai’s condition. 

The Diagnosis 
We were referred to SGH for diagnosis and to get the proper treatment needed. They gave us two weeks to get everything ready before we moved. During that time, Lawai was warded three times due to dysentery and acute bronchiolitis. We flew to Kuching on 11th March 2023 hoping that the lump was non-cancerous. But alas, we were met with regrettable news. Lawai got his biopsy on the 15th of March and was diagnosed with neuroblastoma cancer on the 24th of March 2023. 

Neuroblastoma (NB) is a cancer that develops from immature nerve cells found in several areas of the body. It most commonly arises in and around the adrenal glands, which sit atop the kidneys and have similar origins to nerve cells.

Lawai wearing his gold crown craft made together with his mother for Childhood Cancer Awareness Month.

Starting Treatment
Lawai was instructed to undergo chemotherapy and tumour removal surgery. Every time Lawai completed his chemo cycle, he would lose his appetite, not even wanting milk. We could only feed him milk through his NG tube (The nasogastric tube, or NG tube, is a plastic tube that goes through the nose, down the throat, and into the stomach to deliver formula or medicine.) It’s become a routine for us to check in and out of the ward due to his frequent fevers and his vomiting several times a day.

It was very hard for me to see Lawai so weak. He was only a baby and I couldn’t help but worry. I remember once when we had to change his chemotherapy drugs and it made him very uncomfortable during the first day of the new cycle, crying all night long. I couldn’t sleep a wink and felt completely helpless, tightly hugging him and trying my best to comfort him. 

Of course, there were days when the stress did get to me. I would scold Lawai for being fussy and uncooperative and feel terrible afterwards. It’s challenging, to say the least, to look after a sick child at Lawai’s age as they are fully dependent on us. Since we were away from family, I didn’t have anyone to turn to to help me take care of Lawai. I’m just thankful to have never even once fallen ill throughout this journey. 

Finding Support at SCCS
When we first arrived, we found it hard to adjust to the new, unfamiliar environment. It was even harder for Lawai as this was his first time away from home.  He whined almost every night looking for his cradle. Lawai didn’t even get to say goodbye to his father when we left as I wasn’t aware that once patients are warded, they are not allowed to leave until the doctors discharge them. 

The Sarawak Children’s Cancer Society assisted us more than we could ask for. The teachers here gave us a lot of moral support, always checking in on us. SCCS Halfway Home always had enough food supplied, making our stay in Kuching easier and more comfortable. We were also provided with transportation and a monthly allowance. 

Lawai playing on the trolley with his new friend also staying at SCCS Halfway Home.

Lawai also took his first step at the centre! What a milestone! He made friends with the other kids staying at the centre too, often playing together at the playground. I also made new friends. The other caregivers have been helping me a lot during our stay at the centre. They helped me to look after Lawai if I were busy, and would share their cooking with us. I felt very grateful for everything and appreciated the love and care the other caregivers and SCCS have given to Lawai. 

Returning Home
Without a doubt, our happiest moment was when we received news from Dr. Betty that we could go home and finally reunite with our loved ones. Lawai completed his treatment on 15 September 2023 but still needs to have monthly clinical reviews at Miri Hospital and undergo CT and MRI scans. However, it warms my heart to see him wake up early every day and make a beeline for his toy car. He plays hard every day and loves to help me with house chores. I’m proud that he’s growing up quickly and getting stronger.

Lawai with his parents, reunited as a family once again.

I’m also very thankful to my husband and family who have been so supportive throughout our journey, always keeping in touch and asking for updates about Lawai’s condition. I also remember an occasion during Raya, when a cancer survivor visited the ward to give presents. She shared her cancer journey with us and it gave me hope that Lawai, too, will become a survivor. I always reminded myself that Lawai is a strong boy who can fight off the disease. 

To any fellow parents who are in the same situation, just know that it is alright to cry. Remember “This too shall pass”. Let’s stay strong for our children and always put God first in any situation we are in.

SARAWAK CHILDREN'S CANCER SOCIETY