- Diagnosed with acute lymphoblastic leukaemia

Brian's story

You’re not looking up

After Brian’s 7-year-old son Liem was diagnosed with leukaemia, Brian’s life fell apart. He struggled at work. A close friend died in a motorcycle crash. His own brother passed away tragically, and even Brian had his own cancer scare. Brian’s heart was starting to break and the only thing keeping it from being broken, was his drive to be a rock for Liem.

“My counsellor said, ‘Your brain has all this trauma going on, and you’ve put it to one side because you’re totally focused. You’re in this glass bottom boat, paddling around, and all you can see is Liem – the fish in the ocean. You’re not looking up.’”

“One day, Liem’s treatment will end, he will be OK, and you’ll eventually look up and see the rest of the world around you.”

Brian was stuck in his “boat” for a very, very long time.

He has an online photo album titled ‘Hell n back’, which includes 191 photos and videos, dating from June 2020-June 2022. As Brian scrolls through the photos, you can see Liem getting sicker and sicker. There’s Liem lying in hospital beds, his PICC lines, odd bruises and cuts and hair loss, among other symptoms of acute lymphoblastic leukaemia (ALL).

“I’ve got brain fog, so I can’t remember much. That’s why I’ve got these photos.” Brian pauses on an early photo of Liem with a nurse by his side. “I remember these nurses with purple gowns holding a bucket labelled ‘TOXIC’, to give chemo to Liem. I was like, ‘What is going on? Chemo, for my boy?”

“As a parent, I wanted to defend and protect my child. And then, this thing, this disease, gets him and… I was just totally helpless, I was a bystander.”

Next, Brian studies a photo of Liem lying down, with his shoulders up to his ears and his chest sunken into his hospital bed. Liem is looking off to the side of the camera, with a blank stare.

“This was the hardest conversation I had with him. There were all these people in the room trying to help… the play therapist, nurses, and I was there as well. They were trying to give him Dexamethasone, which just tastes disgusting.”

“Liem was just crying, getting confused, and it was all just too much. I told everyone in the room, ‘Get out – everybody, GET OUT’, and I said, ‘Liem-”

Brian sighs. He leans back, covers his eyes and apologises. He doesn’t want to get upset, but this is a difficult memory. “I said to him, look, Liem. You’ve got to take these medicines. If you don’t take them, you might not come home.”

Thankfully, just a few photos later, Liem is sitting down with a plate of crushed up pills and a glass of water. But in the next photo, Brian has his fingers cupped together, holding a small clump of hair, above a page of hand-written medical notes.

“This is when he started to lose his hair.”

“I remember saying to the doctor one day; I think we’ve dodged a bullet! He hasn’t lost any hair. And then one day I stood behind him, and I ran my fingers through his little hair and a big clump came out. I was like, ‘Oh. S**t.” This is when it really hit home that Liem had blood cancer.

His hair loss wasn’t the only side-effect. In another photo, Liem is in a pram, even though he is clearly too big for it at his age. He looks exhausted. “The chemo affected his legs, so he couldn’t walk very well.”

“But you know what, he’s been awesome.”

Brian takes out his phone and plays a video of him talking to Liem in hospital:

‘Liem, how are you feeling about all this?’


‘Happy? What do you mean; happy that you’re sick?’

‘No. I’m happy because I get presents. And being here is like being in a hotel!’

‘And what about the bad things?’

‘I just don’t think about them.’

“I had chats like that with him a couple of times. One day he just said to me, ‘I’m not worried, daddy, because you’re dealing with it.”

And, Brian had a huge amount of support behind him to help him deal with it too.

“The nurses were bloody brilliant. Starship was the best place that he could be, I knew he was in good hands. And LBC was great too – LBC’s picture book, Joe Has Leukaemia, was really good to help explain to Liem what happened to him, plus the Monkey In My Chair, which Tim did with his class.”

“Tim was also the one who encouraged me to go see that counsellor.”

“Because, people just don’t get it. And it’s not their fault, you know, ‘End of treatment’, sounds like a great name for what it is, but it doesn’t mean what you think it means. They’ve taken away the only medicine that has kept the leukaemia away, and now we have to wait and see if it’s worked. You’re still watching every nosebleed, every bruise. It doesn’t just mean you’re cured.”

“That’s kinda why I got so tired of people asking ‘How are you?’ just because they thought that it was all over once he had finished treatment, but it wasn’t. So I became a bit of a recluse, I’d get on the ferry and I’d sit right at the back, away from everyone. I didn’t want to talk to anyone.”

But as Brian scrolls through more photos – Liem’s first day back at school, Liem winning an adversity award at his school’s prizegiving, visiting the zoo as a family, modelling a shirt that details his cancer journey – you can hear the pride in his voice, and the relief that his little boy got through it.

The last photo in the album was taken in June 2022. It’s been over six months, and things are better now. Brian finally has a chance to breathe and ‘look up’, to jump off the ‘glass bottom boat’ and feel stable ground underneath his feet. Liem is OK.

Fast Facts: Acute lymphoblastic leukaemia (ALL)

  • Approximately 75 New Zealanders are diagnosed with ALL each year
  • Majority of cases are under 5 years of age but can be in adults too. It is more common in males (68%)
  • ALL is an acute leukaemia affecting immature white blood cells. It usually requires immediate treatment.