Alex's story

It was a regular weekday night for the Herbert family; until suddenly, it wasn’t.

At 9pm, Alex woke up. He was severely distressed and upset. He was wailing like a lion trapped in his own bed, and with fiery tears streaming down his face, he called for his mum. When Farah ran to his bedroom, she was shocked.

She could tell that Alex was trying to talk – but as hard as he tried, he couldn’t say a word. “He was absolutely hysterical. He tried to get up, and he couldn’t walk properly – but he managed to grab his laptop.”

I can’t talk. – He typed out, while wiping his wet cheeks.

Farah was terrified. “I was so worried. I had no idea what was going on, I was like… was he having a stroke? I literally had no clue.”

Just a few days earlier, Alex had been experiencing nausea and headaches, which his doctor had suggested was a result of too much screen time. But now, his symptoms were much worse – and when Alex started throwing up, Farah knew she needed to do something.

“I said, OK, I’m taking him to hospital. Let’s just see what they say, and rule out anything and everything. I took him to ED, he got seen and blood tests were taken immediately.”

Time seemed to blur in ED. It was about 1am, almost five anxious hours later, that Farah was given the news that would change the rest of their lives. The doctor said to Farah:

“We’re about 99 percent sure that he’s got leukaemia.”

The pit in Farah’s stomach dropped, and her eyes started to well up with tears. “I was like, ‘How can you be so sure after just one blood test?’ It was incredibly overwhelming.”

Farah called her parents, who quickly arrived at the hospital, then she went home to tell her husband. Together, they discussed Alex’s treatment plan and what the future looked like – as uncertain as it was, at the time.

The pit in Farah’s stomach dropped, and her eyes started to swell with tears. “I was like, ‘How can you be so sure after just one blood test?’ It was incredibly overwhelming.”

Farah called her parents, who quickly arrived at the hospital, then she went home to tell her husband. Together, they discussed Alex’s treatment plan and what the future looked like – as uncertain as it was, at the time.

They just couldn’t wrap their heads around it – how could this have happened to Alex? It didn’t make any sense. “It was a big shock for both of us. He was so healthy, so energetic.”

Alex is a smart and talented young boy. “He was in athletics club, he did robotics coding, and he played football… he had heaps of energy. He was even a purple belt in martial arts!”

Now, he was knocked out in a hospital bed with a life-threatening disease.

“Alex wasn’t told about his leukaemia until the morning because he was in and out of sleep, and having transfusions to keep him going. So when he finally got told, his first thought was, ‘Did I not eat well?’ ‘Was I not eating enough vegetables?’”

Alex’s specific type of leukaemia was confirmed – acute lymphoblastic leukaemia (ALL) – after a painful lumber puncture. But, the worst was yet to come.

“The first month of treatment was already really intense; but even after that, it got scarier. They had to do another lumber puncture just to tell us how his results were going.”

“Just before Christmas, we got the results that he wasn’t doing as well as we were hoping, so they were going to intensify the treatment.”

Farah was crushed. “You understand that doctors do everything they can – but when you’re told that everything is going to be fine, and then it’s not…it’s really hard.”

“So the chemo started in January, and they were doing two different types – injections and chemo pills, which wasn’t the common procedure for kids. The injections were horrible, and what was hard was keeping him still through it all. He hated it.”

“He just wanted to SCREAM.”

Fortunately, when Alex was diagnosed, Farah met Tim from Leukaemia & Blood Cancer New Zealand (LBC). “Tim explained what LBC could do for us.”

Alex got to be a part of LBC’s Monkey in My Chair; a programme where his classmates were given a stuffed monkey to sit at Alex’s desk while he was missing from school, and Alex was given a smaller monkey to keep with him. LBC then helped facilitate sending messages between Alex and his classmates through the monkeys.

And in LBC’s Super Kids’ Club, Alex had the opportunity to talk to a professional play therapist and other children living with blood cancer. Surprisingly, his younger sister Zara loved it even more – as she could join the sessions for siblings, called Kids’ Club.

“Zara has a special place in her heart for Kids’ Club. The whole experience of talking about your feelings with each other, plus the facilitation, is amazing.”

“Now that Alex is in his maintenance phase, Tim calls me now and then to check how we’re doing. And I’ve been to the LBC parent support group as well – that’s been awesome.”

“It’s just over a year now since Alex was diagnosed on November 17th. So it’s a really hard time – and for Christmas, honestly, we just want to take a break and spend time together as a family, because we couldn’t do that last Christmas.”

“We might even end up going to the Coromandel, or Whitianga. The last couple of times we have tried to get away; the hospital has said no. So we really want to do it now.”

Alex’s poem

“Alex has a hospital teacher, and she catches up with him four times a week. She gave me call and she said, ‘Has Alex shared the poem he wrote in class?’”

“And I said no, and so she shared it with me. Apparently he’d written it within 10 minutes, just using his imagination. I think it’s pretty amazing.”

“I said to him, ‘Wow, that’s an amazing poem, Alex. What made you write that?’ He said that he wanted to talk about how he was feeling and what he was thinking.

And I said, ‘Alex, Do you think about dying?’ And he said, ‘Sometimes I do, when I’m dreaming. But I want to live.’”

I am
A poem by Alex Herbert, 9

I am crazy and energetic
I wonder if aliens are real
I hear dinosaurs turning into chickens
I see dragons
I want infinite robux #game currency
I am crazy and energetic

I pretend to be a powerful wizard
I feel happy
I touch a wand
I worry about hackers hacking my account
I cry when I go to the hospital sometimes
I am crazy and energetic

I understand losing
I say you say what you are
I dream about me dying
I try to fly
I hope to have superpowers
I am crazy and energetic