As the world battled Covid-19, our baby was fighting for her life
By
Trustin Neo
, 18 March 2021
Photos courtesy of Trustin Neo.
Shortly after Ona was born, she was brought to the neonatal intensive care unit (NICU) when the doctor detected she had breathing issues. They later discovered that she had a cleft palate.
It was emotional for my wife to be separated from Ona minutes after birth. She was worried about Ona’s speech development and well-being while coping with her own recovery.
Feeding Ona was also challenging and stressful, as babies with cleft palates have difficulty with breastfeeding and require special bottles and assistance.
An operation was planned for Ona at nine months old to help stitch up the cleft.
First, a cleft palate … then eye cancer
But even before that, we noticed that when Ona was six months old, she was squinting. Being extra careful, we requested for an eye check.
An ultrasound scan revealed foreign cells within her eyeballs, and the clinic arranged for us to see an eye specialist for a thorough scan. Within that week, Ona was diagnosed with bilateral retinoblastoma, a type of eye cancer in both her eyes.
At our first meeting with the oncologist, the doctor shared with us that the tumours in her eyes had grown to almost half of her eyeballs. Chemotherapy would be needed to reduce their size.
We were informed that they would first do their best to preserve her life, then her eyeballs and lastly, her eyesight. If the cancer had spread from her eye to the brain or other parts of her body, her eyeballs would have to be removed.
A Hickman line had to be inserted into Ona’s chest for the chemotherapy drugs to be given.
It took my family some time to process and accept the result of the diagnosis. We had many questions for the doctor and also for God. I felt pain, doubt and fear.
This was also the same week I got accepted for my new job. I was ready to resign, but decided to stay on in the end.
Chemotherapy was heartbreaking
Ona started her chemotherapy on March 18, 2020 and underwent five treatments as well as a stem cell transplant that was completed at the end of July.
It hurt our hearts to see Ona go through the side effects of the chemotherapy. She was becoming weaker, would vomit and needed to be tube fed.
After her second round of chemotherapy, she also lost her hair. That moment was indescribable.
As Ona’s treatment coincided with the Circuit Breaker, we could only have one caregiver to accompany Ona.
It was really a challenge for us, especially during the feeds, as she had to be tube fed during the chemotherapy session. We had to keep calling the nurses for assistance.
But the lowest moment was when we had to go through an episode of a nasty infection and high fever.
A day before her eye examination, we noticed that Ona started trembling, so I alerted the doctor quickly. What followed was a series of scans and wires placed onto her, and the constant beeping sound of her fast heartbeat.
Ona was then sent to the NICU for close monitoring, and I was not allowed to be by her side. I could do nothing except pray for a good report.
It was hard, but this was when I felt my trust in God was tested. Was I going to keep worrying, or could I trust Him to take care of her and return home to rest?
In our lowest moments, we could only pray
There was another episode when Ona had to be admitted to the NICU for a fever due to low immunity.
She was supposed to have her stem cells harvested in preparation for her next chemotherapy session, but there wasn’t enough stem cells to harvest.
The doctor said we could try injecting a drug that might help boost her stem cell growth. But it would cost $10,000 per needle. We were at our wits’ ends, so we decided to go for it.
The injection did not give us any immediate results, but we still saw how God worked in our lives.
Ona had another attempt to harvest her stem cells, and the doctor shared that they harvested more than enough to even have extra packs of stem cells on standby!
In August, we also joined a Prayer Space session. The Prayer Space was an online prayer meeting initiated by our church during the Circuit Breaker to connect and pray for one another.
By then, Ona‘s blood count was very low.
During the prayer session, I held Ona in my arms as a worship song played. We also had a couple who later prayed for us. We could really feel God’s presence filling our bedroom as we prayed together for the restoration and multiplication of Ona’s blood cells.
In the following weeks, her blood count started to increase!
We were also blessed by an organisation, Atomy Singapore, which donated $10,000 to us. This only came after our Prayer Space session.
The doctors are hopeful and happy with Ona’s recovery.
She has been declared cancer free and the tumour cells in her eyes have all been rendered dead. There is also no need to remove her eyeballs. Praise God!
We’re in awe and surprised by Ona’s cheerful character and strength. At the start of her chemotherapy treatments, she could only lift her head, but later she could slowly flip and stand with the support of her bed.
After a year’s delay, Ona will be having her cleft operation at the end of March. We pray for a healthy body, a successful operation, the doctor to be alert and have firm hands, a quick recovery and a good appetite post-surgery.
This has been a very long yet short journey. While the world battled Covid-19, my family fought a scary battle too. Although we were fully prepared for the pandemic, we faced a greater challenge.
I believe every test is always a test of our faith. Instead of feeding our fears, we can choose to feed ourselves with the word of God to grow our faith and overcome the situation.
The constant encouragement and prayers from our church and our friends also sustained us.
Parents, always be mindful of the possibilities of cancer in children. Thankfully, early detection can increase their chances of survival and full recovery.
An earlier version of Trustin’s story was first published on City News.
Click here to join our Telegram family for more stories like Ona’s.
