“I met Jeonghyo, my Korean husband, online on a language-exchange website ― he was learning English and I was learning Korean. We chatted daily for six months before he quit his job in Korea and flew over to see me. It's been close to three years now.
I’d always wanted to have kids early, so we were really happy when we got pregnant. My pregnancy was extremely smooth. Apart from typical morning sickness, which stopped after the first trimester, I had no pregnancy complications or any other discomfort. I slept through the night without having to get up to pee, had no water retention and could walk as briskly as before. It was a breeze.
I’m lucky to have Elise because when I was 21, I found out that I had ovarian cancer. My tummy felt hard when I pressed on it ― it was so large people often offered me seats on the train, even though I wasn’t pregnant.
“My tummy felt hard when I pressed on it ― it was so large people often offered me seats on the train, even though I wasn’t pregnant.”
I went for an ultrasound scan and found that I had tumours that were too large to be measured by the machine! I went to the polyclinic to get a referral to a hospital. When I was told that it would take about a month to get a hospital appointment, I broke down in front of the doctor. Somehow, they managed, incredibly, to squeeze in a same-day appointment at the National University Hospital. On doing an ultrasound scan at NUH, they determined that my condition was serious and scheduled me for an operation a week later to remove the tumours.
My condition was known as Ovarian Immature Teratoma, a cancer which mostly manifests in children, not so much in adults. I had two tumours ― one in each ovary. One measured 23cm x 20cm x 7cm and the other measured 9cm x 8cm x 3cm. There was also another 3cm cyst which they managed to remove during the operation.
Before the operation, I was made to sign a form which stated that I knew that one or both of my ovaries may be removed as a result of the operation. But I was lucky ― I came out of the operating theatre with both my ovaries intact.
The doctors recommended that I do adjuvant chemotherapy* as there was a 30 per cent chance of a relapse. I couldn’t decide and suffered from clinical depression as a result. I was warded for two weeks and ended up forgoing the chemotherapy treatment.
I’ve passed the five-year mark without relapsing. In fact, it was through a hospital blood test (one of the cancer markers is hCG) that I found that I was four weeks’ pregnant with Elise! Indeed, I’d much rather have a baby than a relapse! Luckily, my fertility hasn’t been affected by the cancer treatment as I not only had Elise but am now pregnant with my second child.
* Adjuvant chemotherapy fights cancer by combining different forms of healing, such as chemotherapy and radiation, or chemotherapy and surgery. Usually, the chemotherapy will be used after all of the known and visible cancer has been removed surgically or with radiation.
Just before Elise turned 1, we noticed that her right eye would wander off ― many people told us that it was just lazy eye and that it could easily be corrected.
However, when we were at an optical shop in Korea, both the opticians there insisted that we bring Elise for an eye check-up. Upon returning to Singapore, I went to the polyclinic to get my daughter a referral to NUH for a detailed eye check-up.
One day, before the NUH appointment, I stuck an eye patch over Elise’s good eye to correct the "lazy eye", then headed to work. While I was on my way to the office, I received a call from my husband, who was at home. He was crying and saying that he thought Elise is blind.
We had to act fast, or her life would be at greater risk if the cancer spread.
When I rushed home, my father, who is living with me, demonstrated to me what he observed: When the patch was pasted over her ‘good’ eye, she had to feel around in front of her and did not react when we pointed things out to her.
The NUH appointment could not be brought forward, so I had to wait. In between, we celebrated Elise's first birthday with friends and family. At the hospital, they assessed her eyes, which led to a more detailed examination under sedation.
We were informed that Elise didn’t have a simple lazy eye as we’d thought but there was a large tumour in her eye. An MRI was scheduled the next day, which told us that the tumour was confined to her left eye.
As the pressure behind her eye was high, this meant that there was a higher chance of the tumour spreading. It was a Grade E tumour, the worst grade for retinoblastoma.
With help from friends and family, we managed to consult two other top doctors at short notice ― Dr Quah Boon Long of the Singapore National Eye Centre and Dr Inez Wong from the Eagle Eye Clinic, who both agreed that enucleation (removal of the eye) was her best option.
In fact, Dr Quah told us point blank that there was no other option and we had to act fast, or her life would be at greater risk if the cancer spread.
Back in Korea, my in-laws were extremely concerned. My brother-in-law drove to the top hospitals in Seoul to ask about the possibility of using Proton Beam Radiation Therapy on Elise. We even booked a flight to Seoul and were scheduled to fly there on a Sunday but Elise fell ill with a viral infection and was in no state to fly.
Then one afternoon, my brother-in-law called us: He had managed to secure a consultation with specialists from Seoul National University Hospital with just the NUH documents we’d provided, without Elise needing to be present. They agreed that enucleation was the best option for her.
We decided on enucleation and that Elise continue her treatment at NUH (under Dr Gangadhara Sundar and Dr Cheryl Ngo). On the day of the operation, as Elise had a bit of phlegm, we were worried that the anaesthetist would not agree to perform the operation. Thankfully, the operation proceeded smoothly.
When I first saw Elise after the operation, she had a patch over her eye and blood had seeped through it. The patch was removed two days later, and we saw that her eye was stitched shut and bruised.
Our hearts ached but at least we knew the visible tumour had been removed, so we were relieved to a certain extent. The lab report showed that the cancer was indeed confined to her left eye and had not spread to her right eye or optic nerve leading to the brain.
Nevertheless, the doctors are taking a proactive approach as we have yet to do genetic testing. This means that she will have to go for detailed eye examinations every six weeks until she is older.
I remember I couldn't bear to look at Elise when her stitches were removed but Dr Ganga coaxed me to look at her. He had put in a conformer (a plastic lens) with a black pupil to maintain some sense of normalcy for Elise. Her eye remained bruised for a few weeks, but now it just looks like her eyes are red. We wanted to create her prosthetic eye last month but could not as the wound had not healed completely.
“Our hearts ached but at least we knew the visible tumour had been removed, so we were relieved to a certain extent.”
After the operation, she developed a bit of a trauma and would cry whenever she saw the nurses and would sometimes wake up from her nap wailing. But she has been coping very well since. We think she knows something is different as she touches her conformer at times.
I quit my full-time job to look after Elise and take on freelance translation and admin jobs from time to time. I’m only earning half of what I used to earn (which was not a lot to begin with!). But since I'm currently pregnant, I’ll continue to freelance for now.
As we are on the CHAS system and went in as subsidised patients, our bills are heavily subsidised. I also bought an integrated shield plan for Elise, so most of the fees are covered by insurance. Her prosthetic eye and genetic testing are not covered though. We don’t know the exact cost of the prosthetic eye but heard that it is about $1,000, so it is manageable. Genetic testing costs about $3,000, so we decided not to go for it for now ― also, we feel that Elise is not a high-risk patient.
Some people asked if I needed crowdfunding, but I feel that crowdfunding should be reserved for those with chronic or more life-threatening illnesses. In the hospital, I saw many children with arduous cancer journeys, where the doctors could only suggest rounds of chemotherapy. These people would benefit more from crowdfunding as their medical expenses are indefinite.
We have received so much support from our family and friends. A friend helped me to secure a consultation with Dr Quah, and even passed me winter clothes when the plan was to go to Korea for treatment. My mummy group friends cried with me and are always there for me to talk to. My family and in-laws, as well as friends, all prayed for Elise.
I suppose we might have been too laid-back when other people told us that it was just a lazy eye which would ‘go away’ with time. On hindsight, even if it was indeed a lazy eye, it should have been corrected early.
I believe in fate and that whatever will happen, will happen. While we can do our best to better the situation, some events just cannot be avoided. My husband is worried that Elise may face bullying from her peers but we will take things one step at a time.
I currently stay home to look after Elise, who is such a positive, joyful and active child. She likes dancing, music, interacting with animals and strangers, and hugging her friends. She has a voracious appetite and is not picky about food. She dislikes being told to go for her bath and dislikes getting out of the bath after she gets in. When we have the time, we love meeting friends, going grocery shopping, swimming and to the beach.
I think both Elise and I are incredibly lucky to survive cancer without the need for chemotherapy.”
Jamie Koh, 30, lives in Singapore with her son, Emmett, 2, daughter Elise, 4, and husband Jhang Jeonghyo, who works in IT. She blogs at Bibimbubs.
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