Child cancer survivor relates her experience
MIRI: When I was first introduced to Adeline How, she had a very big smile, enough to brighten up a room.
When Jocelyn Hee, the president of Sarawak Children’s Cancer Society, arranged a meeting between both of us, I was actually taken aback as I had no idea that such a cheerful young girl had been diagnosed with cancer.
Upon meeting, we sat down and she started her story with the same smile: “I am a cancer survivor”, she said, though by the tone of her voice, I sensed a tough yet brave spirit in her.
“As a child, I was a healthy, chubby, active child who was never afraid to make friends with strangers.
“My parents were working in China Town here. I was, then, loved, went around the town, and most of the uncles and aunties knew me,” 27-year- old How recalled as she began her story.
The dizziness and bruises had been going on, but were not given much attention to, until I had high fever that lasted for days up to weeks. So, my parents sent me to Miri Hospital for a more detailed check-up. The doctor ran a blood test and initial diagnosis showed that I had Stage 1 chronic myelogenous leukaemia (CML).
The unexpected news Her chubbiness remained until she was 10-years- old, when she gradually slimmed down.
It was the start of her Primary 4 school year, she said, and she was so happy with the changes she thought were part of the growing process.
It was also the same year that she had her first menses. However, when her period started she felt dizzy to the extent that she found it difficult to stand.
“The doctor told me that it could possibly be anaemia that caused the dizziness,” she said.
After that, unknown bruises appeared on her body, which she did no pay much attention to as she was an active child.
“The dizziness and bruises had been going on, but were not given much attention to, until I had high fever that lasted for days up to weeks.
“So, my parents sent me to Miri Hospital for a more detailed checkup. The doctor ran a blood test and initial diagnosis showed that I had Stage 1 chronic myelogenous leukaemia (CML).”
CML is a disease in which the bone marrow produces too many white blood cells.
How was admitted into the hospital for three days, before she was transferred to Sarawak General Hospital.
“I knew nothing about it initially. My parents looked worried but did not intend to let me know anything. They just said that I was ill and needed treatment at the hospital.”
After rounds of chemotherapy in Kuching, her family members and relatives took turns to get tested for compatibility as bone marrow donors.
Her youngest brother who was then five-years- old surprisingly was a match.
“So, I waited another six months in Kuching in queue for a bone marrow transplant that was scheduled in Kuala Lumpur General Hospital. During the wait, the doctor put me under medication and chemotherapy,” she related.
Did you at that time realise why you were in hospital? I asked her.
“Well, my parents refused to tell me. So, I asked my doctor. They tried to explain bit by bit about my illness, though I did not really understand; somehow I knew that I was sick.
“Funny enough, during that time, upon learning about my illness, I wrote a will. I won’t tell you exactly the content of the will, but it was something about who I would give away my toys to,” How said, trying to squeeze in some humour.
The wait, she continued, was excruciating and felt like a lifetime.
“I was grateful my mother stayed by my side. Despite being exhausted, emotional and shattered, she remained calm and made sure I was well taken care of. My dad had to stay back in Miri to look after my other siblings.” Bone marrow transplant and
bullying After the bone marrow transplant, How experienced post-transplant rejection. Rashes, severe migraines and high fever occurred. She was put under doctor’s observation for a month before she was allowed to go home to Miri.
What followed, she said, was a visit to Miri Hospital every three months for follow-up body check and blood test.
Since the first diagnosis until post-transplant, How had missed school for over two years and the UPSR examination. She attended Peralihan class in SMK Lutong for a fresh start in her academic education.
“Beingateenageristoughenough to handle the peer pressure. It was even worst being a cancer patient. I was hairless and had to wear a head covering to stop the staring. My self- confidence was low, but thankfully, my classmates were very understanding.”
What was thought to be a smooth year for her at Peralihan became a disaster when she entered Form 1.
“A classmate made fun of me, calling me names and worst, belittled me to the extent that it shattered my confidence to a new low. As a result, the bullying took a toll on me, I had an emotional breakdown. I had to seek counselling from a counselling teacher to help cope with it.”
Thankfully, the bullying stopped when she was in Form 2 and she gradually got back to her old cheerful self. Living the ‘normal’ life again
Though people say that cancer has become common, How sometimes felt like the odd one out.
“I feel fortunate to be able to make friends, true friends from secondary school years. At least, I don’t feel lonely. There are also times, when I don’t want them to be too protective or too caring towards me. I wish they would look at me the ordinary way.
“I’d rather not tell new friends about my health and my condition, now that I am slowly recovering. I want to avoid all those sympathetic stares. I want to be seen as a normal healthy person not a patient,” she said.
“There were times I asked my parents about the times in the hospital, they simply skipped the whole part, because thinking about it makes them sad, really sad. Sometimes, I caught them shedding tears; it was devastating memories for them. But they didn’t know that I knew,” she said, trying to hold back her tears.
Misconceptions about cancer among people is another reason she chose to avoid talking about her past.
“People have all kinds of funny thoughts about cancer, saying it may be contagious, or because of the things we’ve eaten or done, etc. So, I stopped talking about anything related to cancer altogether, they wouldn’t understand.
“Some say bone marrow transplant is a cure; however, practising a healthy lifestyle after the transplant is the key, because neglecting it may cause the opposite.
“Eating fresh food, not necessarily organic, but real food. No seafood, durian, etc. I assume that my strict diet helps a lot, though every now and then I would enjoy ice- cream,” she said.
Apart from her day job as an accountant, How is also a volunteer with SCCS for ‘Go Bald, Colour Rush’ awareness campaign, ‘Golden Child Camp’ etc.
“( I attend) all other activities except the Memorial Day as I couldn’t get myself to attend because it would bring up a lot of memories. The Memorial Day is an activity by SCCS to remember the children who lost the battle to cancer.”
How was also brave enough to participate in the ‘Go Bald’ event a couple of years ago, having her head shaved, which she said sent out a powerful message to people, especially about her as a survivor.
Before concluding the interview, I asked her what she’d like to share as a survivor.
“I think my happy- go-lucky personality has something to do with it. I’ve learnt to adjust my emotions. My doctor, at the time, even taught me to see the treatment as vacation from school.
“More importantly, think of the bright side because emotions have correlation with the health condition.
“I think it has something to do with the hormones. People say good emotion kills the cancer cell,” she said with a smile.
Adeline also told me that she has a boyfriend now. She hopes to see herself get married and have a family.
“He knows about it. I do not think that I should keep it from him. I am glad that he is very understanding,” she said.
Adeline How, cancer survivor