Patient Story Type: Leukaemia

A family’s journey

“She’s the most incredible little girl. She’s a keen netballer – she got Junior Player of the Year last year! And she loves singing and music, and all things fashion. She’s just your typical 9-year-old girly girl.”

Hannah Whitehead is talking about her daughter, Frankie, from a room in Starship Hospital. It’s the end of February, and little Frankie has been in Starship since November. She was admitted following her third relapse of acute lymphoblastic leukaemia (ALL) and has faced a string of serious complications after a recent bone marrow transplant.

Frankie was just three when she first became unwell. Hannah and her husband, Dylan, were a busy young couple juggling work and parenting their two little ones when Frankie’s diagnosis came out of the blue.

“Frankie was sent home from daycare… She had a fever and was feeling lethargic, so we just thought she’d picked up a virus. That continued through the weekend, those high fevers, and she was just so, so tired. So that prompted us to take her to after-hours on the Sunday.”

At the after-hours clinic, a doctor noticed some slight jaundice in Frankie’s eyes. She was referred to the ED, where they ran some bloods, and could tell immediately that Frankie had leukaemia.

“Frankie was diagnosed with standard-risk ALL. She went through two years of standard treatment, which involved chemotherapy – intrathecal, oral, and IV. It was 800 days in total. It was a long process and it was really hard. But had we known what was coming afterwards, it would have felt easy by comparison.”

After treatment, Frankie returned to kindy and eventually started school. Life was getting back to normal, and more than a year after the end of Frankie’s treatment, Hannah and Dylan took a rare child-free trip down to Queenstown for Hannah’s birthday. While they were away, Frankie seemed unusually tired, and was taken to the GP by Hannah’s parents for an infection on her hand.

“Dylan and I got home that day. We only had to take one look at Frankie, and we knew exactly what was happening.” A blood test at the hospital was all it took for Frankie to receive a relapse diagnosis.

“From that point, we learned that her leukaemia was no longer completely responsive to chemotherapy alone.”

Frankie underwent four months of immunotherapy to get her to the point where she was well enough to receive her first bone marrow transplant, followed by a week of conditioning chemotherapy. The donor cells came from her little brother, Leo.

“That all went really well. She was in remission and the transplant was deemed a success. And then life was back to normal. She was back at school, and we had 12 months before she unfortunately relapsed for a second time.”

With Frankie’s second relapse diagnosis, Hannah and Dylan were presented with two options: Frankie could have a second bone marrow transplant, or she could try CAR T-cell therapy in Australia. It hadn’t been long since Frankie’s first transplant, and the team at Starship encouraged them to pursue the option of CAR T-cell therapy. They were fortunate to have government funding approved for the treatment.

Within two weeks of Frankie’s second relapse diagnosis, the family were on a plane to Australia. She went through treatment in Brisbane, and 30 days after she received the CAR T-cells, her tests came back clear – she was in complete remission.

Following this, her bone marrow was tested every month. After six months of clear tests, they were spaced out to every three months. It was on the first of these three-monthly tests that Hannah and Dylan’s worst fear was realised – Frankie’s leukaemia had returned for a third time.

“Then we were at the point we’re at now, which was staring down our final treatment option – the second transplant.”

This time, Frankie’s bone marrow donor was her dad, Dylan. She was admitted to Starship in November to have the transplant and has been in hospital since then. “She’s had every complication under the sun with this transplant… The biggest thing we’re dealing with now is Grade 4 Graft versus Host Disease (GvHD). That has been so challenging.”

“But at this point, she’s in remission, and outside of the GvHD, she’s doing so well. We’re just ready to get home.”

Along their journey, Frankie and her family have had ongoing involvement with LBC. “We were introduced to LBC when Frankie was first diagnosed, when Tim came around on the ward,” Hannah says. “He’s popped in a few times since we’ve been here this time. And he very kindly organised a birthday cake for Frankie.”

“He connected her with the online children’s group as well, and he did Monkey in My Chair for her school. She named her monkey Bananas. And then she’s got Bananas Junior, which is the smaller one that hangs out with her. Her friends at school have loved that.”

Hannah’s focus now is on getting Frankie well enough to be discharged from hospital, so the family can return home to Northland and Frankie can be reunited with her schoolfriends. Although there’s a lot to look forward to, Hannah knows it will be an adjustment.

“I think there’s kind of the assumption when you have an experience like this, that treatment finishes and you just pick back up with normal life. But there’s a lot to process and heal from.”

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.
• ALL is an acute leukaemia affecting immature white blood cells. It usually requires immediate treatment.
• For more information on CAR T-cell therapy, visit lbcnz.link/CTC

I can work with this

In 2020, Tokoroa-based primary school teacher Vonda was adjusting to a whole new way of life amidst the COVID-19 pandemic.

After months of delivering lessons online, school finally opened again, and the teachers were encouraged to focus on the children’s wellbeing. The school recommended they use Te Whare Tapa Whā, a Māori model of health Vonda had first learned about in the 1980s. The model considers four pillars of wellbeing: Taha tinana (physical), Taha wairua (spiritual), Taha hinengaro (mental and emotional), and Taha whānau (family and social).

Every day, Vonda checked in with the children to see what they’d been doing to support each of these areas. But at the same time, Vonda’s own wellbeing was slipping.

She’d had a spider bite on her hand that wouldn’t heal, so she made an appointment to see her GP. “I went to the doctor the next day. For some reason, I lost my breath walking up from the car park. I slumped over the counter.” After initially being told to go home and take some Panadol, Vonda was asked to come back in to have some blood tests. “Three hours later, they called and told me it was terminal. They said, ‘You need to get to the hospital – now.’”

At the hospital, the healthcare team explained to her that she had acute myeloid leukaemia (AML) and needed to start treatment immediately. “I said, ‘Nah, I need to go home. I’ve got a son, a job… I’ve got rent to pay.’”

“They said, ‘If you go home, Vonda, you’ll be dead in 72 hours.’”

After a week of chemotherapy, Vonda was struggling. “I started to feel my strength fading away… I had a bit of a breakdown.”

Vonda was given a mental health assessment form to fill out, and she noticed that it was split into the four headings of Te Whare Tapa Whā. “When I saw that, I was like, ‘Oh my gosh, this is what I’ve been talking to the kids about. I can work with this!’”

Vonda realised she could use this model to communicate with her doctors. She asked to have two big pieces of paper brought to her, and immediately got to work.

“I wrote down all the things that were really bothering me and I put them into those categories. I labelled it ‘Vonda’s Treatment Plan’ and put it on the wall. The next morning, the doctor came in and he looked at the poster and said, ‘Vonda, how are you feeling spiritually today?’”

“It moved mountains for me, that model did. I utilised that model to negotiate my wellbeing.”

Another great help to Vonda was the support she received from LBC throughout her journey. She received one-to-one support from LBC Support Services Coordinator Sharon and was provided with petrol and grocery vouchers along the way to help ease some of the financial burden of her diagnosis.

After three rounds of chemotherapy and a stem cell transplant, Vonda is now in remission. She’s about to head to the World Indigenous Cancer Conference in Australia to present on the use of Te Whare Tapa Whā in hospital settings. And she’s set up her own business as a holistic wellbeing facilitator.

“My dream is that there is a Te Whare Tapa Whā poster in every room in every hospital. That poster saved my life.”

Fast facts: Acute myeloid leukaemia (AML)

• There are approximately 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.

A second chance at life

Josh Komen is 36 and lives in Greymouth with his wife Sibille and daughter Maja. A decade ago, at age 23, he was one of the fastest runners in New Zealand. But his body began to break down. “I stopped running, entered a bike race… and then fell off my bike! I didn’t know what was going on.”

He went home, slept for a week, and developed night sweats. His doctor couldn’t figure out what was wrong. It wasn’t until Josh collapsed in front of his brother and was taken to the hospital that he learned he had acute myeloid leukaemia. Eight months of chemotherapy lay ahead of him.

“I didn’t even know what leukaemia was, or that you could have cancer in your blood. I thought all cancers were an immediate death sentence.”

Josh fell into a deep depression.

“Eventually, I got into remission, and LBC was a big support through it. Not just the financial support for fuel and parking, but also Helen was just amazing. She’d take me out for coffee, have a chat, and just be a supportive friend.”

At the end of 2011, Josh reflected on what was next for him. “I decided I’d achieve some of my childhood dreams, while I still could.”

Josh visited the Everest Base Camp in Nepal, and he remembers one moment in particular: watching kids playing barefoot in rubbish. “They smiled at me with these beautiful smiles. And I thought, holy moly. I’m pretty lucky to suffer in such good conditions here in New Zealand… We have fantastic doctors, nurses and a good healthcare system. I had adequate food, a comfortable bed and my Mum who looked after me.”

Another dream Josh had was to skydive. “I wanted to overcome my fear, jump out of a plane, and land on the ground. And I did, and it was the most freeing moment of my life.”

But that freedom was short-lived, because he then relapsed. Josh always knew there was a chance the cancer could return. But he didn’t expect it to be more painful the second time. “I had even more chemo, and I slipped into a 10-day coma. My family were told I may never wake up. Thank goodness I did.”

Next, Josh had an allogeneic stem cell transplant. There was only a short window in which it could happen, as his donor was a young girl in Germany. Again, he was told there was a high chance he would die. It took an entire year for his body to accept the transplant. “I was able to fly to Germany to meet my donor. And… words weren’t really enough to thank her.”

“But by the time I got back, I had developed this horrific thing called trigeminal neuralgia, an extremely painful condition that affected the trigeminal nerve in my face. I was on every pain medication you could think of.”

By now, it was 2017 and Josh was 28. He had developed a severe chronic graft versus host disease, or GvHD, which meant he needed to go to Melbourne for specialised treatment. “I was so far from my friends and family, and it felt like my life had been taken away. I fell into depression again.” Josh started having frequent heart attacks, and he was flying back and forth between Melbourne and New Zealand every two months for treatment.

“One day, I was on a plane that was full apart from one seat, between me and a woman from Switzerland. We started talking, and she mentioned that she was backpacking around New Zealand and Australia.”

“I asked her about her work, and she said, ‘I’m an oncology cancer nurse.’ I smiled, and said, ‘Well I’ll tell you why I’m in Australia.’” The woman was interested in his treatment at the Peter McCallum Cancer Centre. So, as Josh calls it – his ‘pick-up line’ – was to ask if she wanted to come and see the Centre. They agreed to meet at the Centre at 10am, but Josh was asked to come back three hours later. “We spent the morning together, getting to know one another, and then went back to the Centre. Then we spent the rest of the week together.”

“That’s how I met my wife, Sibs.”

“I didn’t have a job, I was on the sickness benefit, living with my parents, and she moved all the way over to New Zealand for me. She got a job here, and after a couple of years, I started working too, and we bought a house together.”

Josh and Sibille had their first daughter, Maja, born through IVF from a sperm sample that Josh gave when he was first diagnosed.

“Thanks to LBC, I can live life to the fullest. They played a pivotal role in my wellbeing and support. I can’t speak highly enough of Helen – she did so much for me.”

Now, at 36 years old, Josh isn’t the fastest runner in New Zealand. He isn’t travelling the world or skydiving out of planes. He’s just grateful to be alive and to have his family with him.

“I’ve got a life I couldn’t even fathom when I was 23. As you can see, I’ve been pretty lucky.”

Fast Facts: Graft vs host disease (GvHD)

• GvHD is a side effect of an allogeneic stem cell transplant, affecting up to 80% of patients. GvHD happens when T-cells in the donated stem cells or bone marrow attack the patient’s own body cells. Some GvHD may be a good thing, because it means that the new immune system is working and is likely to be attacking any remaining disease cells
• GvHD can be controlled with medication and in most acute cases it will stop
• Chronic GvHD can be severe and long-term, lasting a few months or a lifetime.

A father’s fight

It’s 11am on a Monday and Robert is receiving treatment for leukaemia. Hospital staff come and go as he talks about how he ended up here. “I felt unwell for about a month. One day, I lost feeling in my hands and feet, and I felt dizzy. I rang my boss and he asked if I was well enough to finish the day, and I said yes. But towards the end of the day… he was like, ‘Nah, go to the doctor.’”

Rob went to his doctor and had blood tests done. By 7pm, he received a call from an oncologist, who urged him to go to the ED as soon as possible. “I was freaking out, and so I went to the ED, and the doctors were like, ‘You have leukaemia,’ and I was like, ‘Huh? What is that?’ They said it was cancer. I was pretty shocked.”

“My sister-in-law had the same type of cancer as me – acute myeloid leukaemia (AML). And my old lady had breast cancer, so when I heard ‘cancer’, I just thought it was something to do with lumps in your body.”

“But blood cancer isn’t the type of cancer you can just chop out.”

Rob’s wife was distraught. And his kids didn’t really understand. “They’re all under six, so they thought – oh, Dad’s just sick and he needs medicine.”

Thankfully, after Rob’s second round of chemo, he was told he was in remission. Despite this good news, things are still hard. He still needs to finish two more rounds of chemotherapy, and treatment can feel incredibly isolating. “It feels like fatherhood’s been taken from me,” he says. “All I want to do is be a dad. But I’m in here for four or five weeks at a time.”

“My wife is so strong. She’s looking after five kids by herself. And even though she lives an hour from the hospital, she still finds time to visit me. That’s two hours of driving, plus wrangling the kids… People tell me that being here is helping everyone. But right now, I can’t see or feel that. I just feel lazy and useless.”

Rob is interrupted by the arrival of a haematology nurse. She asks him questions about a cut on his lip, his skin and his temperature. Then she asks him how he’s doing mentally. “Not good. I’m missing my kids. But I’ve got two of their birthdays this week, so I’ll get to see them.”

“The support here is awesome. But I’m a bit of a hard-headed person. I don’t like pity,” Rob laughs. “And I’m not good at asking for help.”

That’s why when Rob was visited by Deborah from LBC, he only wanted for his family to be supported. His wife was given petrol vouchers to aid the long drives to and from the hospital.

Putting his needs first has been a challenge for Rob. “For the last 30 years of my life, I’ve been working and helping other people. This is the first time I’ve had to look after myself. I’m not used to it, and I don’t like it,” Rob laughs.

“This whole experience has just made me want to help people more.”

Fast Facts: Acute myeloid leukaemia (AML)

• There are approximately 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.

Is this our life now?

“I used to look after my grandparents when they were sick, and I remember receiving the news that they had cancer. So, I knew how things worked; you know, the whole – “pulling you aside” – thing. Doctors never pull you aside to tell you good news.”

Tupou was at Auckland’s Middlemore Hospital with her 9-year-old son Taalili, who was in the other side of the room with a play therapist. They had just rushed here after their GP urged them to go straight to the hospital, having examined a strange lump on Taalili’s neck that looked serious.

And when this doctor at the hospital asked Tupou to step aside for a moment, she knew exactly what they were about to say to her. She was distraught.

“When they said that he had blood cancer, I just broke down. The very first thing that ran through my mind was… my son is going to die.”

Tupou pauses, as she struggles to find the words. “I was heartbroken. All I remember was screaming, ‘No, not my son! Please, not my son.’”

But, it was her son. It was Taalili, the child quietly playing in the corner. The bubbly, caring, sport-loving young boy with his whole life ahead of him. He was the one who had a life-threatening blood cancer called acute lymphoblastic leukaemia (ALL).

The doctor assured Tupou that they would start treatment immediately, and that they would do everything they could to help Taalili. But, Tupou was still anxious.

This was when Tim from LBC reached out to Tupou. Tim told her about some of the ways that the family could be supported, which Tupou appreciated. And later in Taalili’s journey, he would join LBC’s Super Kids’ Club, where he would have the chance to connect with other children with blood cancer and receive support from trained play therapists. His siblings also had the chance to join in, as coping with their brother’s blood cancer was hard on them, too.

But for now, the family were just focused on getting through it. “Life after the diagnosis was like, ‘Is this our life now?’ You see people go through cancer in movies and stuff, but when it actually hits you in real life – it’s just a whole other world.”

And no one knew that world better than Taalili himself.

“Why are you all treating me like a baby?“ – This is what he said to a room full of hospital staff, after being transferred to Auckland City Hospital. He was frustrated, having been poked and prodded and having had various tests done on him by well-meaning nurses and doctors.

“Ever since he first found out, he didn’t want to be kept in the dark about anything. From the get-go, any news we’ve had throughout his journey, we’ve always told him in words that he can understand. Taalili has been really brave throughout this whole process.”

“Even when we went through hurdles, and he was going through so much pain. Even when the medication was hard to take. He kept saying to us: he’s going to keep going. He knew, deep down… ‘If I’m going to beat this. I have to do what I need to do.’”

Taalili’s friends and whānau are all immensely proud of him. Their support helped keep his spirits high and motivated during the tough times. “And, we met other families going through a similar blood cancer journey. It was cool to be able to relate to them, and talk to them too. Like, saying to another parent, ‘Oh, Taalili was at that stage last year, too.’”

Today, she also recommends that other parents of children with blood cancer reach out to LBC for support.

Over a year and a half later, Taalili is in the maintenance phase. He has been given an estimated ‘End of treatment’ date, and their family are very grateful to be here.

“Often, we do things, and he’ll be like ‘Oh man, I couldn’t do this when I was in hospital.’ Last year, he would have to watch his brother’s rugby games online. But now, he can actually go and be there in person.”

“He’s even joined a Muay Thai kick-boxing group. He really wants to be active again.” Taalili has been eager to return back to school. Initially, after finishing treatment, he was allowed to go back to the regular school routine.

But, he now gets tired very easily. And, with a weakened immunity, he also often comes home from school sick. It has been hard for the family to balance her son’s social and learning needs – while also making sure he’s as safe and healthy as possible.

“There’s no manual for how to have a child with blood cancer. We’ve been learning throughout the way. Now, we’re just grateful for life.”

 

Fast Facts: ALL in children

• The most common type of leukaemia in children, accounting for 82 % of leukaemias
• Children undergo a treatment regime of at least 2 years
• 5-year survival rate is 93% **
• More common in males (on average 68% male)

 

 

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.