“My daughter’s brain tumour made my family stronger”

The devastating news of her daughter’s brain tumour cost them several friends, but it made Jackie Chang’s family close ranks.

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“My daughter has always been a confident child. She’s a kid with a seemingly high threshold for pain. So, it surprised us one day when she cried during a shower, complaining of a headache. The next day, when she could not even complete climbing the steps on the overhead bridge because of the excruciating pain at the back of her head, we brought her to the doctor for a check-up.

At age 7, she was diagnosed with medulloblastoma, one of the most common types of paediatric tumours. After we learnt about Celeste’s condition, our world just collapsed and suddenly seemed to stop. But we knew we had to be strong for Celeste ― we didn’t know how long we were going to have her for. Surgery to remove Celeste’s tumour was done the next day.

My hubby called his company that same day to inform his superior in London that he would be on long leave, but he quit his job a few days later. He wanted to ensure that Celeste had the best attention. Making sure that she had the best possible environment to fight the illness was the only motivation that kept us going each day.

After her surgery, Celeste had to stop school for almost two years to undergo radio and chemotherapy treatment, she was too weak to do anything else except rest in bed. We did consider home schooling quite a few times but we didn’t take it up as we thought that going to a public school would give her the opportunity to make friends and help her social skills.

“We didn’t know how long we were going to have her for.”

When she returned to school after her treatment, she continued to join the classmates of the same level but we knew that she would be facing difficulties. She faces challenges dealing with analytical situations and takes a longer time to process information when conversing and reading. She also faces difficulty in understanding maths concepts. Because she has coordination problems, she’s not able to do sports and play games like badminton. While the parents [of Celeste’s school mates] can be empathetic, her classmates aren’t the same. Celeste does get bullied in school and I feel more can be done to raise awareness of brain tumours in schools.

We knew we had to tell our friends about Celeste’s condition. And of course, everyone was shocked as they’ve never experienced something like this, especially when it’s a child.

Upon learning the news, some of our friends and relatives sort of “disappeared” from our lives. We were very saddened by this as we really needed as much support as possible. It was really hard for me, and it kind of made me lose faith in humanity. But what we lost, our faith gave us back and we relied on it.

Read on to find out how Celeste’s condition has changed family life for the Changs…