“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…

We found new friendships and developed even deeper ones with our existing friends. My best friend in America rallied around us, sending Celeste gifts and remembering every one of Celeste’s important dates like her MRI and chemo-cycles. Even though she is miles away and has her hands full taking care of three children without help, she still finds time. It really gave us strength to know we had her strong support.

Celeste's social circle is small. Previously, she was a very active girl and mixed well with everyone. Now, she shies away from people and activities. She’s told us that she prefers animals to humans as they are not as complicated.

We also cook a lot more now. The children have gotten used to a varied diet, which has made things a lot easier for us, food-wise. We shop much less now, too. The family enjoys just being home rather than fighting the crowds in the shopping malls.

“It also allowed us to see that there are many kind souls who devote their time and life to volunteering for what can be considered unglamorous causes.”

My younger children, Jordan, 7, and Elliot, 10, were very young when Celeste was diagnosed and was undergoing treatment, so we can’t say much has changed for them. They don't attend enrichment classes as we prefer to spend a lot of time together a family. The kids also enjoy reading ― the library has become their favourite hangout. They are also more conscious about the value of money as they know that both their parents are at home caring for them.

My daughter’s condition has made us realise that we are nothing without our faith. Prior to this, we were like most Singaporeans, chasing the same dreams and wanting more of everything. Through this experience, we’ve learnt to treasure what’s important in life and to be more empathetic. We’ve also seen many kind souls who devote their time and life to volunteering for what are considered unglamorous causes.

As a family, we’ve learnt the path that our faith has set for us could be a little different from others. But we will stay close as a family and do our best to help others who are in need.”

Jackie Chang, 45, is married to Astro Chang, 47. They are parents to Jordan, 7, Elliot, 10, and Celeste, 14.

Next, learn facts about brain tumours…

Facts to know about brain tumours

Dr David Low, vice-president of the Singapore Brain Tumour Society, shares important information about brain tumours:

* Each year in restructured hospitals, about 40 to 50 operations are performed on children with brain tumours. In Singapore, brain tumours are discovered in 1 to 2 per cent of the total population.

* While brain tumours can be benign or malignant, either form can pose danger and be life-threatening. As the tumour grows, it causes pressure on the other brain structures and consequently, and is likely to affect other parts of the body.

* Common symptoms of a brain tumour include recurrent headaches and vomiting, nausea and weakness in the limbs, and problems with balance or coordination. Also, watch out for problems with vision, speech, swallowing or memory.

* Brain tumours are classified by grade, not according to stages, unlike other cancers. There are four different grades:

Grade I The least malignant and associated with long-term survival for the patient. They grow slowly and appear normal when viewed through a microscope. Surgery alone may be an effective treatment for this variety of tumours.

Grade II These are slow growing and, under the microscope, look slightly abnormal. Some can spread to normal tissues located nearby and may even recur as a higher grade tumour. Sometimes, there’s little difference between a Grade II and III brain tumour.

Grade III These tumours are actively reproducing abnormal cells, which grow into the brain tissues they are located near. These abnormal growths tend to recur, often in a Grade IV form.

Grade IV The most malignant, these can reproduce rapidly and easily grow into nearby normal brain tissue. These tumours can form new blood vessels, which, in turn, help them to keep growing rapidly.

Photos: Courtesy of Jackie Chang

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