Video producer Charmaine Seah-Ong emerged from a difficult year with a fresh outlook on life and a renewed legacy of love
What a long way Charmaine Seah-Ong has come. And we are saying this with conviction from a friendship that has spanned over two decades.
When Seah-Ong used to have a Xanga blog (on the now-defunct platform) with the handle @eleventhour, in her late teens, she often posted clubbing photos of her and her wide-ranging groups of friends. She was the quintessential girl-about-town, always effortlessly decked out in vintage or up-and-coming brands, and at the coolest band performances even if they were held in the most underground of locations. Wait. Besides the blog, Seah-Ong is still all of the above today. But also a lot, lot more.
It has been a year since her eldest daughter Charlie Rose Ong was diagnosed with leukaemia, while Seah-Ong was six-months pregnant with Eadie Willow Ong. It was a journey she had kept very private, except for her family and small number of friends. “I needed to keep it within my inner circle and family because I knew I didn’t want unsolicited advice from strangers. And when you’re so used to sharing so much of your life on social media, I was surprised by how much I needed privacy,” Seah-Ong reflected. “I think I wanted us to try to have as much normalcy as possible in our lives.”
The ordeal started in September 2021 when Charlie was warded at Mount Alvernia Hospital for 10 days when she had a relentless high temperature without any other symptoms, except for an unusual blood platelet count. After countless medical tests, she was cleared of any viral or bacterial infection and was discharged. However, Seah-Ong and her husband Derek Ong were advised to consult a paediatric virologist and a paediatric oncologist for further tests.
After six weeks of weekly blood tests, Charlie’s oncologist suggested a bone marrow test, of which the results subsequently showed up negative. She was then referred to another paediatric specialist who diagnosed the then-seven-year-old with junior arthritis before Charlie was quickly put on the medication, but the occasional temperature spikes and blood platelet count still puzzled the doctors and her parents.
“At this point after the diagnosis of junior arthritis, Charlie was still going into the hospital to draw five to six test tubes of blood every week because the doctors were still running tests,” Seah-Ong recalled. “It had gotten to a point where she was immune to and so unafraid of needles—thankfully.”
Charlie was also put on a steroid treatment as an attempt to get the supposed junior arthritis, an autoimmune condition, under control. However, as a result, Charlie’s weight also went on a rollercoaster journey as her appetite would spike and wane according to the steroid treatment.
The agonising pain in Charlie’s joints persisted even with increased consumption of stronger arthritis medication. “Some days, she would have to go to school with her arm in a sling because the slightest movement would cause her immense pain,” Seah-Ong continued. “Her ankles would hurt too and it was very hard to watch as she has always been a very active girl. She was in gymnastics at this point but had to stop because she was just in too much pain.”
One night in June last year, nine months after her initial hospitalisation, Charlie was trying to fall asleep in Seah-Ong’s bed when she suffered another painful episode. “I was massaging her joints—and I was pregnant and tired—but poor Charlie just couldn’t stop crying. She was in the worst state I had ever seen her in,” Seah-Ong trailed off while fighting back tears.
