In March that same year, Ethan, then 3, also had pain under his armpit, though this went away after a few days. Then the following month, his leg starting aching. This, too, went away on its own. He also started complaining about a stomachache that same month.
In May, worried that he might have hurt his muscles or even his veins, I took him to a paediatric orthopaedic specialist for a proper checkup to address his leg pain.
It was during this checkup that I learnt that Ethan had leukaemia.
The armpit pain he had been experiencing was because his lymph nodes were inflamed. The pain in his legs was also due to the leukaemic cells gathering around his bones. Both his spleen and his liver were enlarged, which explained the stomachache that he was having.
“It's like living with a time bomb attached to your heart.”
When he was diagnosed, Ethan’s haemoglobin count was only 4.0 ― the normal is 12.0 and above. His platelet count was 40 ― the normal is 150 to 450.
Unbelievably, from the time he was born till he was diagnosed, Ethan had never had any major illness ― not even a fever. He had never even taken any medicine before his diagnosis. He was a fully breastfed baby from the time he was born, till he was 2½, and when he started taking solid food, all his food was homemade ― by me.
Ethan’s diagnosis is the biggest blow I’ve experienced in my life and I’ve been through some really tough times, but this journey is life-changing.
It changes you in every aspect, knowing that a lot of things can happen and that there is no guarantee of a ‘cure’. It's like living with a time bomb attached to your heart.
Ethan’s treatment started almost immediately, as this acute form of leukaemia is very aggressive. He had a blood and platelet transfusion, as well as an induction protocol to push the cancer cells into remission.
This was followed by a high dose of chemotherapy to wipe out whatever cancer cells remained in his body. He had countless bone marrow aspirations [taking a sample from the soft tissue inside your bone], and a spinal tap, which is a form of chemo given through the spine. Chemotherapy was also administered intravenously, intramuscularly as well as orally.
Starting treatment was really tough on Ethan. Barely two weeks into the induction protocol, he had a very bad neuropathy ― or nerve damage ― which caused him temporal paralysis waist down. He couldn’t stand, walk, or even crawl.
He had a very bad neuropathy ― or nerve damage ― which caused him temporal paralysis waist down.
Every child reacts differently to the treatment and it was comforting when he started to learn, crawl, stand and walk slowly again.
Thankfully, a big chunk of the medical fees is absorbed, as Ethan has a medical card that gives us subsidies. I still need to fork out some money, but much of it is also covered by insurance.
We did experience a hiccup halfway through treatment, which caused him to develop a very bad allergy to one of the chemo medicines. The alternative for that medicine was very, very expensive, we ended up having to reach out to public to raise RM100k to cover that medicine alone.
We were home bound for the first three months or so, as Ethan wasn't mobile. We also spent many, many days at the hospital for his chemo infusion which could take days.
Diet-wise, he could eat anything as long as the food is well-cooked and clean. As he had never had junk food before, his diet during treatment comprised only of wholesome food.
Another important point to note is that hygiene is critical when you’re undergoing chemotherapy, as the body doesn’t have the antibodies to fight off even a simple flu.
Thankfully, he completed all his treatment in July this year, and has been in remission since.
As clichéd as it may sound, I found my strength through my two sons. My eldest, Isaac, who was barely 11 when Ethan received his diagnosis, had to grow up overnight. I had to focus on his younger brother then, which I felt really bad about.
“You never know how strong you are until being strong is the only option you have.”
I try to take time off to spend time with him alone, like going for movies or to dinner, but he was the big brother I needed him to be. I wasn't even there with Isaac physically when he was there with his dad when he died. Isaac had taken time off from school for about three months to be with his father, who was then battling end-stage lung cancer in a Singapore hospice.
It's hard having to juggle work and caring for Ethan at the same time, but you never know how strong you are until being strong is the only option you have.
I spend a large amount of time at work, as I also work part time aside from my main job as a personal assistant to make ends meet. So, I like to spend any free time I have with my boys, going to the movies, the park, or swimming.
Ethan now he attends an enrichment class, so he can mingle with friends his age. My mum, who lives with me, takes care of him after his class.
I have tremendous support from both friends and family. Most of my friends gave me my own space, I guess because they didn’t know how to react or what to say when they saw me. But I know they are always there if I need them.
As for Ethan, he was a champ the whole way. Whatever he was going through, he never lost that smile and sunny ways, and that helped us all as a family.
The whole experience has taught me that life is very fragile. One minute, Ethan was the healthiest and the most active child, the next he was fighting the battle of his life.
“I have learnt to accept and to cherish the NOW, and not to think or worry about what will be or when.”
I have witnessed how scary this ‘cancer’ word is, and how toxic the treatment is to a child. I’ve seen how at one minute the child may be smiling, and the next he or she is in the ICU, or in some cases he or she may pass on, I have learnt to accept and to cherish the NOW, and not to think or worry about what will be or when.
I also set up a Facebook platform to fulfil the wishes of cancer kids, especially those who are terminally ill. You can visit the page here.
Parents need to have a basic knowledge of cancer, its signs and symptoms. People need to know that childhood cancer is different from cancer in adults. More awareness would mean more support, more funding and a higher chance of a hope and a cure. We need awareness, so that there will be more treatment options for children.
No one wants to be associated with the word ‘cancer’, especially ‘childhood cancer’. But it’s real…it’s there.”
Mary Anne Loh, 40, a personal assistant, lives in Malaysia with her sons Ethan, 5, and Isaac, 13.
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