#MumStory: Her Son Had Leukaemia At 10 Months Old

If you have kids, you know that fevers can be scary. From common flu bugs to hand, foot and mouth disease, they are tough to deal with. Jasmine Quek's youngest child, Anson, had a persistent fever for a week when he was 10 months old. He was eventually diagnosed with leukaemia.

As this happened during the circuit breaker in 2020, Jasmine and her husband took turns to look after their son in 24-hour shifts while he was undergoing treatment. During that time, the couple saw each other for only five minutes a day as one looked after Anson while the other looked after their two older kids, who were six and four then. As the primary caregiver for Anson, Jasmine took leave from her job for seven months.

The operations manager at a public healthcare institution shares with us her experience of looking after her son with leukaemia, as well as how she coped during that trying time.

Read on for her #MumStory.

What is your biggest reason for having kids?

My husband and I both have three siblings each and saw the joy that comes with a big family. We wanted to have kids in order to achieve a complete family.

How did you find out that Anson had leukaemia?

When he had the persistent fever, I was so worried because I didn’t know if it was dengue or some other sickness.

We initially went to a paediatrician who wanted to do a urine test. But such tests take quite a while for the results to come back and his fever was still ongoing. We didn't want to wait and decided to take him to the children's emergency department where they did a blood test.

They then led us into a private space. Since I work in a hospital, I knew that doctors don't usually take people to a private place to talk about a normal diagnosis. I knew something was wrong. When they told us that Anson had zero white blood cells in his blood and had leukaemia, we were in denial; we didn't want to believe it. My husband even tried to get a second opinion but the results were the same.

That day, we told our family members that Anson was diagnosed with leukaemia, was admitted to the hospital, and to not call us at all. We were just so tired and were having headaches by the end of the day. So we told them that when we were more stable, we would talk to them. We really needed a breather after everything.

How did Anson's leukaemia affect your relationship with your family?

I had to spend less time with my two older kids and family members. The Children's Cancer Foundation sent some social workers to our house to interact with the kids and update us on how they were coping.

Whenever I had could, I tried to spend more quality time with my two older kids. Our bond is even stronger now as we helped each other get through difficult times.

What was Anson's treatment process like?

From the start, the doctor told us that chemotherapy was necessary and that a bone marrow transplant was needed. Anson went through five or six rounds of chemotherapy and my husband donated his bone marrow.

Anson would occasionally have UTIs because he was immunocompromised. He had a total of 10 hospital admissions and two ICU admissions. He also had some operations done, such as for inserting the peripherally inserted central catheter line for his chemo.

Another time, he had some blood clots around his spine area that needed emergency surgery to remove. Because the blood clot affected his lower body function, he had to learn how to walk and crawl again. His peeing and pooping were also affected.

While I accepted the fact that he had to go through treatments and that we had to follow the doctors' instructions, I felt powerless and awful to see him in that state. It was horrible to see his hair fall. But it became a norm for us. To cope, I relied a lot on looking forward to small milestones in his treatment and celebrating every small improvement. Praying also helped my husband and me to cope mentally.

Anson was eventually discharged after about five months, and his remission is stable.

How did Anson respond to treatment?

Initially, he looked very tired and sick. With the fever, he was very inactive, lethargic, and didn’t want to do anything. But as he was going through chemo, he became more active. We were just happy that he responded well to the treatment.

How did life change for you?

All of a sudden, I had to stop working to look after Anson. Since this happened during the Covid-19 outbreak, I felt like life came to a standstill.

Our helper left the day before the circuit breaker hit, and it had a huge impact on the family. With Anson in the hospital, we had to juggle our duties at the hospital and home. 

With the circuit breaker and the changing rules in the hospital, there could only be one caregiver with Anson at any time. My husband and I alternated on a 24-hour shift rotation to look after him; whenever Anson was hospitalised, I would prep the other two kids, send them to school, and head to the hospital to look after him. I would spend time using toys to play with him, do his leg physio, and read to him. After 24 hours, I would head home, do housework, and fetch the kids back from school in the evening and prep them for bed at night.

How was your relationship with your husband affected?

During this period, I saw my husband less than five minutes a day because we couldn’t do the handover in the ward. We could only do it in the lobby. We also needed help from our parents and family members to look after the kids while we commuted to change shifts.

As we could only communicate through short texts and calls, that led to some miscommunication, and it was quite frustrating. We had to be mindful to rectify miscommunication and minimise them.

My husband and I supported each other through acts of service. During the handover, we would pass things over to each other, such as tidbits and a charged tablet that could be used at home. We would also do as many household chores as we could so the other person would have more time to rest at home.

When Anson was at home, we took turns practising physio with him and celebrated any small achievements or good progress. Very importantly, my husband and I also had "us" time -- we dated by having meals together while Anson napped.

What kind of support did you get from those around you?

While it was important to have help from our family members, they didn’t know about how we felt. The mental and emotional support I had came from the doctors and nurses, as well as parents of kids with cancer.

It was very important that the doctors and nurses were there to share how to look after Anson so that we knew what to expect and what to do. They shared a lot about how well past patients were doing, which was very encouraging and reassuring. The nurses also provided a lot of entertainment and company for Anson which helped us get some rest.

Was your mental health impacted?

Yes. I felt bad about having to leave work so suddenly and not being able to help at work when everyone was fighting the Covid war. I felt like a burden when my family members had to help provide transport for me and the kids.

But with the support from colleagues and family, I could turn my focus on Anson’s treatment. There were times during the treatment when I would think about the negative side of things. But I'm thankful for family, close friends, and church friends whom I could share my feelings with. They encouraged me to think positively.

How did you make time for yourself while looking after Anson?

What I did was try to find pockets of time to just wind down.

In the hospital, it was quite hard to rest because Anson would want us to carry him to sleep. There would be times when he would sleep, and then we would sleep, but he would wake up and want us to carry him to sleep again.

So when he was really well asleep, I would quickly try to get some rest or entertainment by watching Netflix. These pockets of time helped me to be myself and care for myself. 

Now that there are no more hospital stays and fewer follow-ups, I have more time to myself. As Anson is no longer immunocompromised, he attends school and I don't have to look after him full time.

Does Anson know he had leukaemia?

I’m not sure he knows it’s called leukaemia, but he knows that he was in the hospital for a while because we took a lot of pictures, printed them out, and put them in a book. Every now and then, we look at it.

We want this to be a memory because we went through this as a family. It is something we look back on to cherish our time together.

Anson is still on follow-up with many doctors; during his oncology checkups, he undergoes finger pricks for blood tests and sometimes needs to be sedated for bone marrow aspiration procedures. Checkups can be challenging if he does not cooperate, so I'd have to prep him a day before on the procedures he will undergo, what to expect, and what to do. He has been quite understanding and cooperative so far, and is very aware that he had some condition before.

How has Anson's leukaemia changed your outlook on being a mum?

I used to think that my main role as a mum was just to parent and ensure my children received love, and that I could meet their individual basic needs. Having been through this leukaemia journey, I realised that what happens to one person affects the others in the family.

Being a mum also means having to look at the overall wellbeing of the family. It's very important to have clear communication with the children on what is going on and what to expect. I also have to be a pillar that all of them can fall back on equally, and not just for Anson.

What advice would you give parents with kids who have leukaemia?

Don’t give up hope and don’t feel bad asking for help. Sometimes we just need that support to remain sane and strong for the family. People around you are more than willing to go on this journey with you.