Patient Story Type: Leukaemia

60 trips since diagnosis

“I’m one of the lucky ones; no question.”

At 75, Rob has seen every corner of the world, and kept travelling even after getting diagnosed with chronic lymphocytic leukaemia (CLL). In fact, he’s travelled over 60 times since then.

“I’ve had blood tests in Tanzania, Zanzibar, South Africa – and Canada. I’ve even spent 4 nights in a hospital in Alaska.”

And, having spent 22 years of his life with a blood cancer, he has experienced incredible advancements in treatment and technology.

“When I was told I had CLL, the average life expectancy was 8 years. I thought, well, bugger this. I don’t want to die before 60.”

Rob was diagnosed on September 20 2001, the day before his partner Joan’s 50^th birthday the next day. “We cancelled the party we had planned; we were too upset.”

Rob’s blood type is O-Negative, which made him a universal blood donor. He had proudly donated his blood 72 times. “But, number 72 was bizarre. I received a letter saying that I should make an appointment at what is now the Blood and Cancer Centre in Wellington. That’s when I got told I had CLL.”

“I thought they’d just tell me I was low in iron or something, so I didn’t think to bring Joan. I just had this shockwave through my body – I heard ‘leukaemia’ – but I didn’t hear a thing.”

Rob believes that if he hadn’t donated blood, his CLL might not have been discovered so early. “Although CLL is not hereditary, I tell my son that he should donate blood. Not only can it save lives, but it can save our life as well.”

Rob has tracked every blood test and CLL drug he has ever taken. Over the years Rob has had FCR (Fludarabine, cyclophosphamide, and rituximab) treatment 11 times, plus 7 additional rounds of rituximab alone.

“I started on 80mg a day of prednisone, and this was back in 2006. I was awake for 23 hours a day! This was before Netflix, so I would get DVDs of TV shows and watch them on my laptop to pass the time.”

“In 2018, my current specialist, Rob Weinkove, one of New Zealand’s top specialists leading the charge in CAR T-cell therapy, said that I might be eligible for a clinical trial of Venetoclax monotherapy. I looked it up overseas and it cost about $105USD per pill. I had to take 4 a day!”

Rob is happy with his life, living with his partner Joan at home in Otaki. He’s very grateful that his blood cancer journey has been managed so well, and he hasn’t lost that lust for travel!

While it currently seems impossible to get travel insurance to cover CLL (partly because the insurance companies are working on updating policies to be in line with modern maintenance treatments), Rob is confident he can get cover for his other conditions.

“I was born on the 4th of July – I couldn’t be more independent, if I tried.”

Fast Facts: CLL

• The most common leukaemia affecting around 300 Kiwis each year
• It affects developing B-lymphocytes and usually develops slowly, not always requiring treatment straight away
• Most patients are over 45 years.

 

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.’

‘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.

This story is an updated version of a previous story we published about Ayla, here.

Take a deep breath, place one foot in front of the other, and just go.

Start running and don’t look back. That is what 7-year-old Ayla did, when she participated in her school’s cross-country race last year, completing two full laps with a port needle attached to her. Not what your average 7-year-old would do, but Ayla has acute lymphoblastic leukaemia (ALL).

And, the week of the big cross-country race coincided with an appointment to go to the hospital. Her Mum Yvonne, says: “Ayla was so disappointed, but she just said, ‘Nah, I’m going to do it anyway.’ And she did. She ran slowly and carefully, and she finished the whole thing. It was amazing.”

‘Amazing’ is an understatement. Ayla’s tenacity runs in the family – mum Yvonne, her partner Nathan, and Ayla’s sibling Mikah – they’ve been through hell and back over the last 2 years, and never given up hope once. But, it wasn’t always like this. Yvonne recalls the early days of Ayla’s diagnosis, and an adverse reaction that she had to chemotherapy. Ayla was stuck in a hospital bed for two months.

Ayla could barely walk, let alone run a marathon. She almost died.

“It’s hard to look back on that day. It’s almost like a story that I tell myself.”

The day Yvonne is talking about is the 3rd May, 2021. It was a Monday and meant to be Ayla’s first day back at school, after the holidays. Throughout the break, Ayla had been complaining about what seemed like a mild cold – but on that Monday, it seemed a lot more serious. Ayla was exhausted, feverish, and had a persistent cough.

Ayla also had a bruise that was taking longer than usual to heal. Yvonne and Nathan weren’t overly concerned, but they decided to take her to their family doctor just in case. “The doctor’s questions made me remember some other strange, unexplained bruises that had since disappeared.”

Some of other major red flags that the doctor noticed were enlarged lymph nodes and a massively enlarged liver. Alarmed, the doctor called their local hospital and then took blood samples from Ayla to be sent off urgently for analysis.

It was on a bike ride later that day, that Yvonne received a call from the GP. “She said that Ayla’s white blood cells were low, and I just… I just…” Yvonne stammers, trying to get the words out. It’s clear that she’s replayed this memory in her head a thousand times.

“I just knew. I said to her – ‘It’s cancer, isn’t it?’ And, she said, ‘Well, we don’t know, and I can’t confirm that, but it sounds likely based on her symptoms and her blood results.’”

After Yvonne rushed Ayla to the hospital, ‘likely’ turned to ‘definitely’ in less than 24 hours. “But, we still had to get Mikah from childcare…and pick up our online groceries too…so I said to my sister, ‘Can you do that – oh, by the way, Ayla might have cancer – and could you tell our Mum?’ Because I just couldn’t face telling her. It was chaos.”

Yvonne didn’t realise it at the time, but she was in the middle of a panic attack. It was fortunate that Nathan was calm enough to leave and pick up Mikah. This is when doctors arrived in the room.

“They wanted to tell me about Ayla’s diagnosis right then and there, and I just said, ‘No. I can’t do this without Nathan.’, So I sent a whole team of doctors away. And when they came back, when Nathan was here and I was ready, they seemed as frightened as I was, actually.”

Yvonne laughs, in a ‘what-on-earth-was-happening’ kind of way, recalling the sad, confusing, absurdity of it all. It didn’t make any sense.

“It’s impossible to overestimate the level of support we have received from LBC. And it’s also impossible to overestimate the level of need for families in our situation as well.”

The level of need for families is something that Matt from LBC was well aware of. That’s why he showed up at Christchurch hospital when Yvonne and Nathan needed him. “Matt gave us heaps of information books and resources, so that we could learn more about the terms, and what normal blood counts were, that kind of stuff. And he introduced us to Super Kids’ Club, which Ayla absolutely loves.”

LBC’s Super Kids’ Club is a supportive space for children with blood cancer to meet other kids in similar situations. It’s an opportunity to gain some understanding of what they’re going through by talking to a Specialised Play Therapist. It involves all kinds of fun and creative activities.

“Ayla opened up much more than usual. She asked the other kids whether they also had hair loss, and whether they had nasogastric tubes too…things that took her a long time to come to terms with for herself.” Ayla had instantly clicked, and found her people. But, this wasn’t unusual for brave, thoughtful and empathetic young Ayla, the girl who once put her whole heart into learning NZSL to communicate with a hearing-impaired classmate back in school.

“She recently met a little boy who has severe behavioural issues, and she is so loving and open to him, and he is to her as well. It’s certainly in her to have empathy with other people who are having challenging times in life. She accepts people for who they are, no matter what. It’s something I am super proud of her about.”

And, Yvonne is incredibly proud of Ayla’s young sibling Mikah, who has come a long way, also thanks to LBC’s Kids’ Club. “That therapy side of things is really important for Mikah, who has a bit more trauma around the whole experience, in a lot of ways, than Ayla does.”

“When I see what Ayla is doing and the love between her and Mikah as well, I just feel so grateful that we’ve got to this point.”

Ayla is doing a lot better now. But, Yvonne is still wary. She knows that there is a chance that Ayla’s condition can worsen. “Right now, my fight or flight response kicks in pretty quickly when I’m stressed. So, I just want to be gentle with myself now.”

This is where Ayla leads by example, and she encourages the rest of her family; to go and run that cross-country race, to go for that bike ride, and to plan that holiday for six months from now; even if you have a needle stuck inside you.

This is where you can step up and join us in changing the lives of children just like Ayla all over Aotearoa. Please consider making an urgent donation to LBC today.

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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

Making new memories

Teresa’s leukaemia relapsed just days before her 50th birthday. It was devastating. “I almost cancelled my party that weekend. But then, I was like ‘No, it’s worth celebrating.’ And I’m so glad that I did.”

Teresa hosted a party with all her loved ones around her, despite how raw the news of her relapse felt. It didn’t spoil the night. “I had the best time with all my favourite people around me. We danced, we cried and we had fun.”

“Then, I went into hospital on Monday.”

Teresa’s leukaemia journey isn’t linear. Almost every challenging experience was followed by something positive. “I got out my journal last night, and I was reading what I went through…it was horrific. But in between, it was all about the people I met. The bad experiences blur as they are replaced with new ones.”

One of those bad memories is her initial diagnosis in 2016. Teresa had a rash on her leg, which she thought was a spider bite. Her dermatologist took biopsies, and didn’t find anything unusual. She wanted a second opinion and so she ordered blood tests.

“And my blood counts were abnormal. So they did a bone marrow biopsy.”

The tests came back and confirmed that Teresa had acute myeloid leukaemia. It was a Friday, and so she was then sent home for the weekend. She was asked to return on Monday, the 18th of July; her daughter’s birthday.

“That Monday, my family went out for breakfast, and we ate together. It was this really special day, because it prepared us as a family for the next five months of treatment.”

The treatment was harrowing, but Teresa got through it, and was back at work within months. She was even well enough to travel to London and Paris.

But by the following year, Teresa’s health took a downturn. She started to feel unwell just before her 50th birthday. She had relapsed.

“I actually forgot that they had been testing me for months before I found out. I read that in my notes.”

Perhaps this was another memory that has blurred.

“Finding out I had relapsed was devastating. I didn’t have this reaction the first time, I just went straight into survival mode. But, this time I felt deep pain.”

Teresa’s daughter had planned to visit her in hospital, but as a student with a part-time job, she couldn’t afford it. This is when Teresa’s doctor referred her to LBC.

Teresa met with Sally, the LBC Support Services Coordinator for the Central Region.

“I explained my daughter’s situation to Sally, and she said, ‘We can give her food and parking vouchers to make it easier on her’. She was so grateful for that.”

“And when Nicki joined Sally’s team, Nicki would ring me to check in. I find it hard to reach out, so I really appreciated that.”

Teresa still has a great relationship with Nicki, and she regularly attends her support groups.

Next, Teresa decided that she wanted to make one last special memory before going through her stem cell transplant.

“I went on a short holiday to Hawke’s Bay with my son and husband. It was a special time for us to enjoy nature together, and to have a few days’ reprieve from treatment.”

Teresa walked up Te Mata Peak, and she enjoyed a swim at Waihi Beach. She remembers watching her son playing in the sand, and contemplating how grateful she was for her family.

Soon, her gratitude would deepen.

“If there could ever be a closer bond than what you already have with a sister…it’s receiving her stem cells. My sister was nervous about the transplant…but she’s the bravest in my family. She’s got guts. She didn’t even bat an eyelid about it.”

“It makes me emotional. She gave me life.”

This experience also taught her the value of keeping the right people in her circle.

“I didn’t have the headspace for anyone who couldn’t take me as I was. There was no ‘being brave’ this time. I knew how sick I could get and the humility one needs to have because you lose so much dignity in hospital with what your body is going through.”

“Only certain people can cope with that. People who love you.”

This is one of the lessons that Teresa has learned, now that she has fully recovered. But her biggest takeaway is this:

“I will never again take for granted the little things. It’s the taste of food, the hugs from your kids, and the conversations I had with people along the way – other cancer patients, doctors, nurses and of course friends and family.”

“It’s going down and watching the ocean. At every stage of my treatment, those were the things that had the most impact on me.”

 

Fast Facts: Stem cell transplant

• There are 2 types of transplants – Autologous (using own stem cells) and Allogeneic (using a donor’s stem cells)
• For an Allo transplant, people have to travel to either Auckland, Christchurch or Wellington hospitals.

Getting through the scary bits together

It’s snowing in Taupo, it’s July 2020, and Jacqui is with her family, enjoying a holiday away from their home in Auckland. But, her eldest son is not having a good time. He has typical flu-like symptoms, and he has a painful ulcer on his tongue.

“We all went into the snow to play – except Hayden. He was too tired, so he sat in the car. That wasn’t like him.”

The following week, Hayden took Monday off school. And on Tuesday morning, after sweating through his duvet, and with a high fever, Jacqui took her son to the doctor, who ran blood tests.

Later that afternoon, Jacqui got the phone call. It was confirmed – Hayden had acute myeloid leukaemia and urgently needed to go to Starship.

“I was like, ‘Excuse me? Is this a life-threatening disease?’ And the doctor said, ‘Yes, potentially.”

What followed was a whirlwind of emotions, introductions to doctors, and plans for all kinds of procedures and treatments. They were introduced to LBC Support Services Coordinator Tim, who provided information and a supportive ear at the beginning.

“It was a very long five months. But Hayden had a good attitude about it all. That’s the kind of person Hayden is at heart.”

A year later, in July 2021, Hayden relapsed and he had to go back to hospital for another four months. “He took that very badly. He was quite depressed.”

But, having Tim there made an even bigger difference, this second time around.

“Tim organised a Wi-Fi box for Hayden, to boost his internet because the signal in his hospital room wasn’t great. He loves gaming, so that helped lift his mood.”

“One time, Hayden wanted a specific pizza from this restaurant that couldn’t deliver to the hospital. Well, Tim drove and got it for Hayden, just to cheer him up.”

The lengths that Tim took to support the family meant that Jacqui could focus on being there for her son, supporting him on his journey and eventually helping him recover from his blood cancer.

“Hayden went through a phase of watching horror movies in hospital. I spent five nights a week with him, so we’d watch them together, and he’d laugh when I got scared.”

“Sometimes, I’d leave to use the bathroom… and I’d have to walk down the corridor, and I’d be gone for a few minutes. Then he would get scared, and he’d call my phone, just to say, ‘Come back, mum!’”

And, Jacqui would do just that. She would hurry back, join her son and they would get through the scary bits together, despite feeling scared herself.

This is how they continue to tackle Hayden’s blood cancer journey, now that he is in recovery and Jacqui is aware of every moment they have together.

“We grew close in hospital. He’d tell me that he really appreciated me being there, and I am so grateful for that.”

 

Fast Facts: Acute myeloid leukaemia (AML)

• There are around 140 diagnoses of AML in NZ each year
• AML is an acute leukaemia that develops very quickly and requires immediate treatment
• AML is a cancer of the myeloid blood cells.

You’re not going home, you’re staying here

“You didn’t really know what was going on, aye?” 

Megan Aramoana says this to her 14-year-old son DJ, who is scooped under her arm on their living room couch. It’s a warm afternoon, and yet DJ is wearing a hoodie. 

“We spent the first night in Starship on Level 5, and then we were taken up to Level 7. DJ knew he had acute lymphoblastic leukaemia (ALL), but it wasn’t until he saw the sign on the ward… he was like, ‘Do I have cancer?’ and his oncologist said yes.” 

Despite going up to Level 7, Megan felt like she was falling. Level 7 was for cancer patients. What would that mean? Would the elevator doors open to a giant black abyss? It was terrifying, but there was no other option – DJ needed treatment.  

“It basically cemented what was wrong. We would have to face it. It would make it real.”  

When Megan says ‘it’, she means the horrific idea that her 9-year-old son could die. 

“So we’re on Level 7, and they show us around. They’re like, so…this is where you put your food, the fridge and the kitchen are here, and you can cook in here.” 

“I was like, ‘Why would I want to do that?’ I just didn’t get it. Then they go, ‘Oh, you’re not going home. You’re staying here.’” 

They didn’t know it, but ‘staying here’ would mean that the hospital would become their second home for the next five years. School was out of the picture and it was replaced with chemotherapy, multiple relapses and transplants, seizures and surgeries 

But, for everything that DJ’s blood cancer took from his life – there were just as many layers of support added to it, like LBC’s Tim Maifeleni who met the family early in DJ’s treatment. 

He facilitated a ‘Monkey In My Chair’ for DJ – where a soft monkey toy sat in DJ’s school seat; collecting messages from DJ’s classmates for him to read in hospital. 

DJ’s siblings also had the opportunity to get therapeutic support and meet other kids in similar situations, thanks to LBC’s Kids’ Club. 

Megan remembers being told there was nothing left for DJ. “They were sending him overseas for CAR T-cell therapy, but his cancer mutated and he wasn’t eligible anymore. That was it. They said, ‘Chemo doesn’t work, we can’t do radiation and he can’t have immunotherapy because he had a seizure on it.’” 

“There was just no more.” The abyss was growing bigger by the second – and Megan couldn’t see any way out. She was upset, and DJ was too. Why was this happening to their family? It didn’t make any sense. 

This is when Tim from LBC stepped in. “We weren’t really in a good headspace, aye?” DJ shakes his head. “So I said to Tim, ‘Can you please come and get DJ?’ We kinda needed space to process things on our own without feeding off each other.” 

Tim took DJ to the Breakers basketball team headquarters, where he met with the players and the owner, Matt, who would become another friend for DJ, like Tim had. 

DJ also enjoyed having a PlayStation 4 in his room, which Tim organised as part of a bigger project on behalf of the team at LBC, who were working hard to get funding for all the kids on the ward to get PlayStations too. 

Megan turns to DJ. “That was how you met Charlie, wasn’t it?”  

Charlie was another child on the ward. “I woke up at 1 am one day and DJ wasn’t in bed. And I was like, where is he? I went and looked through the window in Charlie’s room and they were in there, just chatting away and playing a game.” Tragically, Charlie passed away in 2019. 

“It’s been a s**t journey. But, we’ve met some cool people and done some cool things.” 

DJ is in a much better place now. He has blown away all of his nurses and doctors. It’s no wonder Megan calls him her ‘Lil’ Warrior’. 

“One year…” DJ says, with a big smile on his face, “LBC let me do the last bit of stairs of the Firefighter Sky Tower Challenge, with the full firefighter gear on; like the tank and helmet and stuff.” 

“Did you carry the tank?” Megan teases, “I’m pretty sure one of the firemen carried your tank. You just put it on before you came out the door in front of everyone.” 

“Nah!” DJ’s smile turns into a toothy grin, and his mum laughs. She looks at him for a while, as if she’s taking a mental snapshot of this moment to save for later. 

Megan has stood by her Lil’ Warrior this whole time. And, vice versa, whether lounging at home, lost in the abyss or holding hands throughout a relapse, DJ has been there for his mum too. 

“It’s taught our family so many things. We’re all in this together.” 

We are heartbroken to share that DJ passed away on 2 June 2022 at the age of 14. DJ touched the lives of many people; making friends wherever he could and devoting his time and talents to help others.

People often commented that they would leave an interaction with him feeling grateful for their life. This is what made DJ such a remarkable young man.

Our deepest condolences go to his mum Megan, his whānau and everyone who had a connection with DJ throughout his life.

Raising your empathy 

“It was like a military operation, just trying to break the news!”  

Ian Scott had just received his chronic myeloid leukaemia (CML) diagnosis, and he was trying to figure out how to tell his mum, who lives in the UK. 

“I phoned my siblings and said – ‘look, I need you to go to mum and dad’s house, and I’m gonna phone you there. Be there for when I tell her the news’.” Operation: Reveal the Diagnosis had begun. 

Ian knew the news would hit his mother hardest, considering the extensive toll that cancer has had on her family. In fact, this was one of the first things that ran through his mind when he was told by his haematologist that he had CML. 

He had the usual questions – like whether he now had a shortened life expectancy; the answer was no. He wondered how his job would be impacted. “I said, ‘What about work?’, and my haematologist said, ‘Look, sorry to break it to you, but you’re still going to be working!’” 

It turned out that Ian’s CML is manageable, thanks to recent developments in treatment. “I thought to go on treatment, you go on chemo. You don’t know what you don’t know, right? The natural thinking, is you get cancer, you have chemo.” 

But he didn’t need chemo. Instead, he was prescribed a drug called Imatinib. Prior to his diagnosis, he spent an entire year struggling with shortness of breath and trouble with intense exercise. Imatinib helped him get all of that under control. 

Maintaining ‘control’ is a theme that sticks out in Ian’s story. Early in his diagnosis, he was given some practical advice that helped him navigate his journey. 

“Straight after the diagnosis, I freaked out. My boss calmed me down and gave me a process to follow. He helped me to put structure around how I wanted the conversation with my mum to go. And we talked about the value of good information – avoid Google and Facebook!” 

Ian learned the importance of meeting other patients. He attended an LBC conference where he was able to connect with other people living with CML. It put things into perspective. “Their stories were far more troublesome. They had been to hell and back, some of these people.” 

This wasn’t the first time that Ian had been involved with LBC. He participated in past fundraising activities like the Step Up Challenge Sky Tower in 2014. ”Somebody organised that at work and I thought, ‘yeah, they look like a good group of people to support.’” And, since receiving his CML diagnosis, he has continued to support LBC in an advisor role, joining the LBC Consumer Advisory Board in 2019. 

As a senior manager at a recruitment company, Ian knows just how important it is to make genuine human connections with people, especially when you share a major life challenge.  

“It raises your empathy, it raises your understanding, and it raises your care factor.” 

 

Fast Facts: Chronic myeloid leukaemia

• About 50 people are diagnosed a year 
• Most people with CML have a gene mutation (change) called the ‘Philadelphia’ chromosome
• Tyrosine kinase inhibitors (TKIs) are the initial treatment of choice for most people with CML. Imatinib (also known as ‘Gleevec’ or ‘Glivec’), a TKI, was called a ‘magical bullet,’ when it revolutionized the treatment of CML in 2001. 

You are enough for your child

“The doctor called me while I was on my bike ride. She said that Ayla’s white blood cells were low, and I just knew. I had a breakdown on the side of the road and I said to her – ‘It’s cancer, isn’t it?” 

“She said, ‘well, we don’t know, and I can’t confirm that but it sounds likely based on her symptoms and her blood results’” 

Yvonne was talking to her doctor about her 6-year-old daughter, Ayla. The school holidays had just ended, and Ayla had been dealing with fatigue and a persistent cough. It seemed like a mild cold and nothing to worry about. 

“But we started thinking, when she didn’t seem well enough to go to school, and even that day, tossing up whether to send her or not…” 

Yvonne takes a deep breath, holding back tears. “We thought – OK, she’s not well enough to go to school. Maybe the fatigue isn’t linked to the cold.” 

Yvonne and her partner Nathan took Ayla to their GP, who noticed small bruises on her body. She checked her lymph nodes, then her liver, and immediately got on the phone with the hospital to discuss the symptoms. Blood samples were sent off urgently. 

This is when their whole lives changed. Ayla was diagnosed with acute lymphoblastic leukaemia (ALL). Then, ten days later, Yvonne’s father lost his battle with pancreatic cancer. 

“I’m really upset that he had to find out about Ayla’s diagnosis before he died. And he didn’t get to see the good outcome on the other end, which we are well on our way towards now.” 

“I’ve accepted it – mostly – day to day, but there are still moments where I think, is this real? Sometimes I think: I can’t believe I have a child with cancer…I can’t believe Ayla has cancer.” 

Whereas for Ayla, she processed the diagnosis differently. “She deals with things quietly, but then goes away to think. And she comes back with the most amazing things that make you say – yup, you get it.” 

For example, Ayla immediately bonds with people who have nasogastric tubes (feeding tubes), even if they don’t have cancer. She knows some sign language, which was useful at one point when her body shut down, and she almost stopped talking completely. Her signing was a useful tool to communicate with her parents. 

Communication was important, and Yvonne is grateful of LBC’s Super Kids’ Club for facilitating connections for Ayla. “It’s so helpful for Ayla to have contact with other children with leukaemia.” 

“In the first Super Kids’ Club session, she opened up much more than usual. She asked the other kids whether they also had hair loss, and whether they had nasogastric tubes too…things that took her a long time to come to terms with for herself.” 

LBC gave the family a picture book called Joe Has Leukaemia, which was immediately helpful for Ayla’s brother Mikah. Whilst it took some time for Ayla to engage with it, it helped her do something incredible when she finally did. 

“She wrote her own book called Ayla Has Leukaemia. And when she went back to school, she read it to her class to explain to them what was going on.” 

Yvonne could also write a book of everything she has learnt. But her advice for other parents is simple. “Trust that you will learn how to navigate all these things. Know that you’re enough for your child. You might not be perfect, but all they need is for you to be there. All the other stuff? You’ll learn.” 

As Yvonne says this, she pauses and attends to Ayla, who is playing with a toy. It’s a profound moment which shows that despite having ALL, Ayla is not just a patient but she is a normal seven-year-old girl, who wants to be a kid. And Yvonne is more than a nurse or a carer for Ayla, but she is a mum doing her best. This is not something that Ayla’s cancer could ever take away from their family. 

“It’s been such a big lesson in learning to say to myself: What’s happening right now? When I get carried away. I think – ok, well she’s actually having a really good day. Things are really good at the moment.” 

“So, focus on that and enjoy what we’re doing right now.” 

Fast Facts: Acute lymphoblastic leukaemia

• Affects around 65 New Zealanders each year 
• Majority of cases are under 5-years-old
• More common in boys – around 75% diagnosed are male.