Transcription
She had just turned two. So when we wanted to explain to her fully, it was still impossible because she may not – [Asfa yawns] it was still impossible because she may not – [laughs] She may not have understood the entirety of it.
So my daughter was diagnosed with leukemia when she just turned two years old. We got to know about her condition when we started seeing spots on the face. At first, we thought it was constipation she was trying to force the stool out, but then the doctor told us, told her to go for a blood test. They informed us that she... she has leukemia.
Faiz was diagnosed with Wilms' tumour. Wilms' tumour is kidney cancer. So he was diagnosed when he was seven years old. It was just about, I think, a week or two after his birthday that we found out. So he had a fever for a few days and then, one morning he just vomited. So we brought him to the doctor, the GP (general practitioner) touched his stomach and found a mass. So she referred us to KKH (KK Women's and Children's Hospital) and, yeah, that was how it started.
Of course, I was concerned because when I saw the bruising, it didn't seem natural, like the size of a baseball. So, we did blood tests and we were hoping that it was an infection. Yeah, but we never imagined that it would be cancer.
[in Mandarin] She used to have headaches frequently, but whenever we took her to clinics below the block to visit the doctors, they were not able to diagnose her condition and said she was just having migraines. But sometimes, she would have headaches to the point of throwing up. The last time it happened, it got so serious that she nearly fainted. We thought that something was amiss and we had to take her to a specialist. While we were doing the tests, the doctor told us that she might have a tumour and when undergoing the third surgery, she would have a 50 percent chance of getting a stroke. I was so worried then. Then I told the doctor, "You must be careful and take care of my daughter. I don't wish for my daughter to have a stroke, to be honest."
[in English] Juliana: It was shocking, but not so much. Before they did any tests, the doctors actually told me that they suspected (the cancer). I read up on Wilms' tumour. I spoke to a friend who knows someone who has Wilms' tumour. So, I was sort of mentally prepared. The worst-case scenario would be an advanced-stage (cancer) and maybe he might not even survive it. Yeah, but then we said – we told each other, "Oh, let's not think too far. Let's go through the first step first and then see what the doctor says." So, yeah.
Angela: I was numb. I think I also felt a lot of anger, like – you know, why Lucas?
Angela: And –
Lucas: Don't cry. [Angela laughs]
Angela: So we were supposed to enjoy the remainder of his (kindergarten) year and then have a lot of fun experiences before going to formal schooling. So, my husband and I couldn't talk, like, because we were feeling our own emotions and I couldn't pray. But then, because I had the support of my family and close friends, then they helped me to, to gain perspective.
Before Asfa, my wife and I, we had our first child, but she – it was, it was a stillborn. So emotionally, we had suffered something serious before. So when we got to know that Asfa was diagnosed with leukemia, we were very sad. Around that time, my wife was pregnant with our third. Upon receiving the news, we had a miscarriage of our third child. So we were not angry. We believe that God knows what's best for us. So we have that faith in us and we take it as a test as well, on how we can do our part for Asfa’s recovery.
[in Mandarin] One of the neurologists told me first. They saw brain fluid and it had to be removed. It was dangerous, very dangerous. He then asked me if I wanted to let my daughter know about this issue. I said, "Yes." Because she was already over ten years old and should know about it. We would have needed to shave her head and we did not want to hide that from her.
[in English] So I was scared that the wound wouldn’t recover and then there would be a patch of my head that would be bald, like, forever. And also because I feel like my face (looks) very large without hair, but I wouldn't risk of having like, another infection. And once my surgery is done, I can always still grow back my hair. Yeah.
I think we didn't talk about it as well because I had – I was dealing with my own emotions and he was dealing with his own emotions. I think we depended on the KKH social workers and the therapist to kind of explain. I thought it was weird, like, like, why I couldn't walk around, why I couldn't get out of the bed. I didn't like everything, even the hospital, the nurses, the doctors because they made me stay in the bed. I had to make sure that I didn't, you know, transfer (my emotions) to him. If I was tired or frustrated, I really had to keep my spirits up. So it was like, helping him to manage his anger, also help him to get through the days.
Juliana: Was I honest with you? Yes! My husband and I, we were very honest with him. We told him that night itself. We told him the treatment plans the doctor had for him.
My parents didn't tell me that there were needles in the treatment. And whenever I had a fever, I had to go to the hospital and they would have to poke a needle here so that they could attach the drip. Once, I wanted them to poke a needle here but they couldn't find the vein because I have a birthmark here. So instead of attaching the drip for the antibiotic here, they will just attach it through his port. So according to them, it's less painful. Sometimes Faiz refuses to use the port because if they attach it through the port, he cannot button up his shirt and he's pretty (self-conscious). So sometimes he requests for the drip to be inserted here.
She had just turned two. So when we wanted to explain to her fully, it was still impossible because she may not – [Asfa yawns] it was still impossible because she may not – [laughs] She may not have understood the entirety of it. So at that age, we shared with her as much as we could. On the other hand, we didn't want to disclose too much such that she might develop a negative impression of herself.
Because of the (chemotherapy), her hair started to fall off. What my wife did was get a hairband with a fake hair extension and made it look like Elsa’s long hair. So, I'll say like, "Hey," things like, "Hi darling, so pretty today, you look so beautiful." Even up to today, I still do that. Okay, even though it was tough seeing her going through treatment, there were many pockets of joy and new experiences being simply because she was growing up at the time. So those new milestones in her life kept us happy, kept us sane, kept us grounded. Hey, you know, it's just for awhile, she’s going for treatment. After this, she can resume to being another kid who's growing up and experiencing the world for herself.
It really helps if you have a strong support network because it can be quite lonely in the hospital. So I remember friends (would come) over on the weekends and bring coffee, and cupcakes while he was napping. But I will have to say, it was a lot of my faith as well, going from from not being able to pray, to eventually depending on God for his recovery.
So I have a teenager, I have a kid, and I have a baby. So, it was quite difficult to manage. What kept me sane actually is to keep doing what I do on normal days. Okay, I have a baking business that I still continue, even though he had to go for treatment, even though he had to go for operations. And I have this group of friends, who who are working full-time but they will send me messages that are not related to Faiz’s illness. Not – I mean they don't ask, "How is Faiz today?" No. They will just pop any nonsensical messages to me and it helps to take my mind off his illness, actually.
[in Mandarin] During that time, I felt really confused and I did not know what to do. In fact, she was more optimistic when she was about to go for her surgery. She told me, "I know what surgeries are like." Because she watches videos about brain surgeries. (She said,) "Don’t be scared. I won't die, I'll make it out alive."
[in English] I didn't want my mum to feel burdened by me so I tried to put on a smile every time I met her.
[in Mandarin] Yes, because if us (mothers) are sad, wouldn’t our daughters feel even worse seeing us that way? Then when I saw her being so cheerful, (I felt that) I had to encourage her more to make it feel like everything will be okay eventually. That's how we survived the hardship. Day by day, we survived the hardship. Mmm.
[in English] I know one of the ways to keep sane was to let her watch animated movies and Disney happens to be her favorite. So when we asked her, "What would you like to do, you know, at the end of the treatment? What would be nice?" Then she said she wanted to see all the princesses. So when Make-A-Wish reached out to us, that's when we got our wish to go to Hong Kong Disneyland.
Jaslyn: So what kept me sane was because before my whole surgery, I was an avid Korean drama watcher. In those Korean dramas, they have very inter – very interesting plots that are similar to my case. Even though they are met with obstacles, they are still very optimistic. So I wished to go to Korea with my mum and my aunt.
[in Mandarin] Michelle: If I did not have Make-A-Wish's help, I think I would not have been able to fulfil my daughter's wish. Maybe I wouldn't have been able to bring her to such a distant country. Wouldn't have this capability.
[in English] Lucas: In the morning, I got dressed and then went down, then all those people were waiting for me and then when I went straight, like the Ferrari (was) waiting for me. I felt happy, yeah, because everyone cared about me and came to my birthday, yeah. We kind of, didn't remember all the pain, the sadness, the crying anymore.
Faiz: On the day I knew that I was going to Japan, I was jumping around. I was asking Mummy, "How long until we get to go to Japan?" And then Mummy kept telling me, "You will know when we’re going." Yeah, this wish has actually given him something to look forward to. Because at a time where everything seemed very bleak, there's a ray of sunlight that just entered his life.
Horis: It lets her see that, "Hey, there is more to come." If you were to go (to Hong Kong Disneyland) soon, are you able to take – to go for all the rides?
How come?
Asfa: Because I need to be tall.
Horis: You need to be?
Asfa: Tall.
Horis: Taller. And?
Asfa: Stronger.
Horis: Stronger. Yeah.
Juliana: Alright. Can I ask you?
Faiz: No. Yeah, go on. Tell me.
If it were me, being alive means I can contribute more to my family. I can be around them and share the experiences of growing up of my kids growing up. Setting up their own families, getting successful in life, exploring new things in life. After this, I view life as a much more meaningful life. So right now, I feel more confident than before. When I shaved my head bald, my friends around me actually didn’t care at all. What they cared about was how I am as a person. So right now, I wouldn't care about my appearance that much as compared to before.
[in Mandarin] Michelle: Really? I feel like she’s more concerned about her appearance now! [laughs]
Angela: So being alive, we needed to to move out of this idea of self-pity. We depended a lot on our faith. We prayed a lot. We played songs, to lift his spirits. Our priorities changed. Like, we no longer focused a lot on education. We pulled him out of school. We try not to stress him because if he were to relapse, it will be within these two years, so his health is the priority and everything else is secondary.
Producer: Lucas, what do you want in life now?
Now, I want I want a phone. [Angela laughs]
Juliana: What can you do when you’re alive?
Faiz: You can enjoy the things that you like the most. Eat your favorite food.
When (chemotherapy) gets too tough for Faiz, he says, "I wish I would just die. I wish God would just take me." I will take that opportunity to discuss life and death with him. I say, "Well, when you die, it's easy for you, but it's very difficult for the people that you leave behind. So what you have to do is to go through life and then once you've lived your full life, then let God take you naturally."
Once, I said I wanted to be an archaeologist, a chef, and a baker, all at once. But after I had cancer, I wanted to be a doctor because I can treat cancer patients and if they if they say I don't know how they feel, I will tell them, "I I do because I went through cancer too."
Juliana: In a way, I tried to tell him that death is not a solution, but being alive is a journey. And that is the journey that you must try to enjoy and make make full use of. Yeah. Okay, question is, Do you think I'm a good parent? Is Daddy good or not? Naughty daddy or good daddy?
Asfa: Funny daddy.
Horis: Funny daddy. [Michelle laughs]
[in Mandarin] This question is really difficult to answer! I don't think so, because at that time I blamed myself, "Why didn't I take good care of my daughter? Why does my daughter have this kind of illness?" The doctor said that it wasn't. He said that everyone has – what do you call it?
Producer: Cancer cells.
Michelle: Yes, cancer cells. Just that my daughter was unlucky, and hers were triggered. But I blamed myself, that I might have neglected my care for her.
I think she is a good mother, because when I was hospitalised, I was scared, since I had heard about ghost stories set in hospitals, so I asked her, "Can you accompany and sleep with me at night?" And she stayed there with me every night. The mothers of the other patients weren’t even there 24 hours a day to take care of them. So... Except for one time. Maybe... because of a lack of sleep! [laughs] So there was one time when she... it was just before my bedtime, and she told me, "Wake me up if you want anything to drink. I'll help you get water." I woke up around midnight and was really thirsty, so I woke her up. "Mummy, I want to drink water!" Then, she threw a tantrum and told me, "If you want water, you can get it yourself, it's right in front of you!" I felt so wronged.
I think I'm okay. I'm doing okay. I'm still learning to be a parent. I've managed to keep him away from infections. Yeah, I've managed to keep him happy.
My mummy is... kind, because whenever I vomit, she I will always apologise because I I always think it's my fault. And then she will say, "It's not your fault. It's chemo’s fault."
Producer: Have you ever seen Mummy cry before?
Juliana: I don't show my emotions openly. Maybe because I think that as a parent I should be strong for my child. I don't want him to see me emotional because I don't want him to feel bad. Yeah, I try to make sure that I model for (my kids) what is important. Tell them that, that, "Look, we might not always – things might not always go our way. How you cope with it is more important than the experience itself." So, a good parent would want to leave a legacy of values that she believes in, and for me those are the things that I want to leave with him.
Producer: What would you say about your mummy?
Lucas: What do I want to say... Oh, too overexcited, yeah, she was the first one walking to a cosplayer. [Angela laughs] Lucas: Like saying "woo", "yay", whatever. Because I was excited for you, happy for you.
I think being a parent is a role – It's a, it's a multi-role position. Sometimes you've got to be the supportive parent. Sometimes you've got to be the the strict parent. Sometimes you've got to be the inspirational parent. Sometimes you've got to be the goofy parent, so the tough part is trying to decide which role to play at the moment in which situation. So... as good as I can be and I’m getting better.
Producer: What do you like to play with Daddy?
Asfa: I like to draw with Daddy.
Producer: Draw.
Asfa: Yeah.
Producer: Okay, now right, we want you to write a wish for each other. Hmm.
[in Mandarin] Producer: One, two, three!
Michelle: I hope that you'll be healthy and happy every day. I hope to go travelling in Taiwan with you. Mummy will always love you. [laughs]
[in English] Jaslyn: I want my mum to be healthy and happy and hopefully we can travel to her dream country, Taiwan, one day. [Michelle laughs]
Producer: Wow. I wish for you to remain healthy and continue to be the resilient boy I know. I love you. What's yours?
Producer: Your turn!
I wish Mummy will be healthy and happy.
Juliana: Oh, so sweet, thank you!
Producer: Can you show us what you pointed to her?
Producer: What is that?
Faiz: I wrote – I drew a heart and a smile. I wish for Lucas to be healthy and happy all his life.
Lucas: I wish that she won't cry anymore. I wish for you to be brave and kind. Going through your life and having your own family make the best choices and be happy, okay?
Horis: Yay.
Asfa: I love you, Daddy.
Horis: Aww.
Asfa: I love you, Daddy.
Horis: I love you, darling.
Sometimes, a wish can make wonders. Do you know of children with critical illnesses? You can refer them to Make-A-Wish organisation and help make their wishes come true. More details in the description below. Enjoying our series? You can watch more "Can Ask Meh?" episodes on our playlist over here. Click on the bell icon to be notified of our latest released episode!