CLARE Michael, 41, has been fighting a war on several fronts for the past two years.
Taking care of her four-year-old son Micah Mathias, who was diagnosed with cancer in 2018, was challenging enough. But things got worse when the Covid-19 pandemic started last year.
Her husband Mark Louis Benedict, who works in the tourism sector, has had his monthly income reduced significantly, forcing her to help make ends meet.
In addition, she has to ensure that her two other children, who are now forced to study from home, keep pace with their school work.
Micah’s battle with cancer began shortly after he was born. By the time doctors confirmed that he was suffering from Neuroblastoma, he was already in Stage 4. He was only two years old then.
According to the American Cancer Society, Neuroblastoma is a cancer that affects the nerve cells. The fact that it can develop in an embryo means that it is most prevalent among infants and young children.
When Micah was diagnosed with the cancer, his doctors gave him only a 50% chance of survival. The first sign that he had a health problem surfaced when he developed a fever that would not subside.
“Micah’s paediatrician recommended an ultrasound. When the news came that Micah had cancer, there was little time to think. All we wanted to do was to save his life,” she told theSun.
The doctor referred them to the Kuala Lumpur Hospital for treatment. To her relief, Micah did not complain that he had to be fed through a tube for six months.
“He didn’t have an appetite for food and it was a painful decision to have the tube inserted. But Micah is a strong boy. He only cried when the tube had to be changed, which was every two weeks.”
She said she had to forgo sleep to ensure that Micah did not pull out the tube in the middle of the night.
Having to travel regularly from Sabah, coupled with the need to stay in Kuala Lumpur during the entire course of each treatment, the mother and son chalked up a RM60,000 bill per year. But that was the least of
her worries.
“Before the Covid-19 pandemic, we could manage financially. All we had to do was cut down on luxuries, which was fine,” she said.
But the Covid-19 pandemic brought not just logistical problems but financial worries as well.
The restrictions on travel means that Micah now has to have his regular therapy sessions in Kota Kinabalu. On the bright side, it helps reduce expenses. But Clare also
has to ensure that Micah and his
two siblings are protected from
the infection.
With reduced income and added expenses, she had to find a way to make ends meet. In July last year, she started baking and selling buns. Even in the face of such challenges, Clare still found it in her heart to help others. In the first four months after launching her business, she would donate RM1 to the National Cancer Society Malaysia for every box of buns she sold.
Recently, she started a new job as a financial advisor, to give the family income another boost. As expected, it has been overwhelming.
“My energy is draining fast.”
Clare also understands that living from day to day is not the answer.
“I know we have to save money, and plan ahead on what we have to do, at least over the next five years.”
Nursing a child with cancer is a challenge few can begin to comprehend.
“First, you have to be financially sound. Always have funds for emergencies. We never know what will happen tomorrow,” she stressed.
As Clare pointed out, it is a big sacrifice but someone has to make it.
