PHOTO: Celeste Chang had to prevail over a range of adversities even before she could sit for the PSLE exams. Despite struggling with her studies, she still scored two As and two Cs in passing the PSLE. And her family learned to appreciate life and teaching the right things were more important.
Photo: The New Paper
To most 12-year-olds, the Primary School Leaving Examination (PSLE) this year might have been the biggest challenge in their lives.
But Celeste Chang had to prevail over a range of adversities even before she could sit for the exams.
It began with the Nanyang Primary pupil getting headaches in 2010 whenever she took a shower or climbed a flight of stairs.
Celeste described the pain as "unbearable", unusual for someone who says she has a high tolerance for pain.
Her parents took her to a general practitioner who suspected the headaches were not a minor issue.
A Magnetic Resonance Imaging (MRI) scan showed she had a brain tumour the size of a ping pong ball.
Celeste underwent surgery to remove the tumour at KK Women's and Children's Hospital (KKH) on Oct 1 that year and was warded for three weeks.
She then had radiotherapy and chemotherapy for 15 months. The treatments left her physically weak and she suffered several side effects.
She needs lifetime medication after her pituitary, thyroid and adrenal glands were affected and is on growth hormone replacement therapy after she stopped growing.
She also has memory lapses and struggles to understand concepts, as well as suffering high-frequency hearing loss and compromised motor skills, which make it difficult for her to write in a straight line.
Celeste told The New Paper yesterday: "I used to think to myself, 'PSLE is coming, I'm going to die'.
"It was difficult preparing for it but I just did my best."
Despite struggling with her studies, she still scored two As and two Cs in passing the PSLE.
HAPPY WITH PSLE RESULT
Celeste and her parents are happy enough with the result, with her father, Mr Astro Chang, 46, saying: "Academic results are not our main concern. As long as she does her best - maybe it's not good enough for the world, but it's good enough for us."
The family is heartened that Celeste never used her condition as an excuse and, in fact, became her parents' pillar of support through the difficult times.
"It's like nothing can get her down," said Mr Chang, who quit his high-flying job as the South-east Asia director of sales for a multinational company in 2010 so he could help look after Celeste.
"She takes things in her stride and works hard to catch up with her studies even though she was ill for a period of time. She never complains."
His wife, Madam Jackie Lee, 44, a housewife since quitting her job 10 years ago, said: "Our world came to a standstill when we found out about her brain tumour.
"There were tears, but there wasn't time to keep grieving because her condition required immediate attention.
"It broke my heart seeing Celeste suffer. I used to ask a lot of 'why?' questions - why did this happen to her and why she has to go through so much - but I came to a stage where I had to accept everything and trust God to carry us on."
Mr Chang went back to his old job in April 2013 but left again about a year later to care for Celeste and support his wife.
He declined to reveal how much he was earning.
SURVIVED ON SAVINGS
During his time out of work, they survived on his savings and contemplated downgrading from their Bukit Timah condominium home.
Celeste's medical bills were covered by the insurance from Mr Chang's former employer.
She is on financial assistance in school.
However, the Changs learnt on Tuesday that their application for subsidies under the Medifund scheme for Celeste's on-going medication had been rejected by KKH.
They have to pay about $1,000 a month for her medication, which will get more expensive as she gets older and heavier because the cost of her growth hormone replacement therapy is dependent on weight.
When Celeste was diagnosed with the brain tumour, her parents' world shrank to just focussing on her and her siblings, Elliot, nine, and Jordan, six.
Madam Lee said: "Few people could understand what Celeste was going through.
"You think that when you're in a crisis, people will rally around you, but sadly that wasn't the case. Some friends and colleagues just disappeared."
Mr Chang added: "We learned to appreciate life. I used to chase after things like a bigger home and a bigger car, but now I worry about different things.
"The family kept each other going. I learned that being with my kids and teaching them the right things in life were more important."
This article was first published on Nov 26, 2015.
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