Patient Story Type: Leukaemia

It feels like something else

“I went into shock after hearing ‘leukaemia’. It’s not something you ever think you’ll get.”

Tanya is speaking from the United States, where she’s currently staying with family. She’s recounting the day she was first diagnosed with acute lymphoblastic leukaemia.

It was 2013 when she realised something was going on. Tanya was just 23 at the time. She had a supportive partner and a job she found fulfilling, but she’d been feeling exhausted and seemed to be waking up with new bruises every day.

“I did a lot of Googling around then,” she says. “But your mind doesn’t automatically go to the worst-case scenario.” She’d had problems with anaemia in the past and thought her symptoms might be related to that.

Then the bleeding started – first from her nose and gums, and then from her legs after shaving them. “One day at work, my gums wouldn’t stop bleeding… My teeth were all red – I just felt horrible.”

She decided it was time to visit her GP. “I thought, my legs are bleeding, I’ve got bruises everywhere, my gums won’t stop bleeding – I think it’s about time that I actually go find out what’s happening. Because now it doesn’t feel like anaemia. It feels like something else.”

The GP ran some blood tests and sent Tanya home, telling her that if anything concerning came through, they’d call her to come back in.

“They called me back within two hours.”

Tanya was urged to go to the hospital that evening for further investigations. As it got late, she felt sorry for her aunt who was falling asleep on the chair next to her hospital bed. Tanya told her to go home. “My auntie went to leave, and then she came back. I asked, ‘What happened?’ She didn’t tell me until afterwards, but one of the nurses came after her and told her she needed to stay with me because this was something serious.”

Tanya was transferred to Auckland Hospital, where she had a bone marrow biopsy and was eventually given the news that changed everything. “They told me to pull in my support people first. I felt like I would be a burden on my partner and aunt who already had a lot on their plates and trying to put myself in front of their needs was difficult to consider. So I decided to go in on my own”.

“I went from being shocked I had leukaemia, to feeling overwhelmed by the information I was being given. That’s when I understood why it’s so important to take someone in with you.”

Tanya was told that she had 94% blast cells and needed to begin chemotherapy straight away. “I was in hospital for a month or two while we went through the induction phase. I was concerned about not being able to have kids after. That was a major thing for me. But it was quick – they said we had no time to freeze eggs before the first round.”

Her medical team advised her to stop working so she could focus on treatment. “I didn’t realise how intense the treatments were going to be. Throughout the whole thing, I just felt constantly sick. Nausea, vomiting – it was awful.”

Once she was in remission, Tanya returned to work. Maintenance treatment continued but life was getting back to normal.

“But then it came back in 2020. Again, I had fatigue, I had bleeding. And the constant headaches that just would not sort themselves out. I was also having infections – I felt very feverish and nothing was helping to sort the fever.”  When her gums began bleeding again, Tanya went to her doctor for a blood test – and just like that, her fears were confirmed.

Tanya admits she questioned whether or not to go ahead with treatment the second time around. This time, she knew what was in store. “But after telling those closest to me that I had relapsed, they all wanted me to fight. A difficult choice to make, but I chose to do the treatment. It wasn’t for me, though – it was for them.”

The first time Tanya was diagnosed, she had been living with family and was grateful to have them take care of her while she took time off work. “The second time, I worked throughout the whole process. I felt as if I didn’t have much of a choice. My partner had just lost his job because of COVID. Getting a job proved to be difficult, so I made the choice to work. Thankfully, my boss was supportive of my request to continue working.”

Again, Tanya faced horrendous nausea during chemotherapy. “It was hard. Especially when you’re trying to manage to be online, do the work, as well as coping with the side effects of treatment.”

Realising she needed some extra support, Tanya’s nurse specialist told her about LBC and made a referral.

She was soon visited by LBC Support Services Coordinator Tim. Tanya was relieved to hear that LBC had a support group for young adults – something she felt like she’d been missing.

“It was really nice having LBC support groups the second time round. Because I just felt really lonely for such a long time, after losing the friends I made while in hospital. The people at those groups just understood me.”

LBC also provided Tanya with vouchers for petrol and groceries, which helped take off some of the financial pressure she was under.

“As soon as I finished treatment, I was discharged from hospital and then got straight on a plane to the United States to visit my family. I felt like I needed to do that – I think I earned a holiday after doing treatment and working full time.”

“I came here and got to hang out with my family, and it felt great. It reminded me of why I chose to stay alive – for my partner, family and friends I love dearly.”

Although she’s in remission now, Tanya struggles not to think about the possibility of her leukaemia coming back. The fear of relapse is something she’s been able to talk about with others at LBC support groups, and she knows she’s not alone in feeling like this. She’s doing her best, but admits it’s hard: “We can tend to focus on relapse rather than on living life.”

Making memories

Invercargill hairdresser Diane is the type of person who just gets on with things. She’s a mum of three and a grandmother to six, and for 30 years she ran her own hairdressing business. “I’m one of those people that’s never had a sick day,” she laughs.

But last year, at the age of 62, Diane was floored by something completely beyond her control.

“There was one day last year – June 15th, to be exact – where it took me three goes to make the bed. And I thought, honestly, I’m getting old, but not this bloody old!”

“I had noticed beforehand that I was bruising very easily, and I’d had bad fatigue. I would often come home from work and pretty much do dinner and go straight to bed – a late night for me would have been 8 o’clock.”

Diane called her GP and was sent off for urgent blood tests. She didn’t have to wait long for the results. “My doctor rang me about 6.00pm that night. We’d just finished dinner, and she said, ‘I want you to put some comfy clothes on and get down to Southland Hospital ASAP. They’re waiting for you.’”

Diane and her husband rushed to the hospital, where she received an urgent blood transfusion and some more tests. “They pretty much decided then and there that I had acute myeloid leukaemia (AML). All my markers were at zero, everything was just depleted.”

“One doctor told me that if I hadn’t gone to get sorted when I did, I may have only had another fortnight, if I was lucky. That was a wake-up call.”

The next morning, Diane was in an ambulance heading up to Dunedin Hospital. She was immediately started on intensive chemotherapy – every 12 hours for the first 10 days.

Diane spent the next four months receiving treatment in Dunedin – her husband stayed in a local motel and her kids drove up from Invercargill to visit her on the weekends. “When I was allowed out during the day, all I wanted to do was sleep – so often we went to the motel, and I just slept. But I tried to do things with my husband, like we’d go out for lunch. It was just to be somewhere else, to try and be a bit normal.”

During her time at Dunedin Hospital, Diane was visited by Deb from LBC and was thankful to have that extra support. “She immediately gave us a supermarket voucher and a petrol voucher.”

Diane’s healthcare team told her that in the long term, she would need a stem cell transplant. “They basically said, ‘Without that, the AML is going to come back, and you’ll die.’ So that was just a given.”

In October, Diane was allowed home for three weeks before heading up to Christchurch to start the transplant process. “So, we had an early family Christmas. We had fish and chips, and later we toasted marshmallows.”

Her kids had given her a voucher for a family photoshoot earlier in the year, so while she was back at home, they took the opportunity to use that too. “I felt so good about that – in case things didn’t pan out, I thought at least the kids would have those memories.”

Diane received her transplant on November 24th. It was initially supposed to go ahead a week earlier, but an infection delayed things. In a stroke of luck, during the delay, a better donor match was found.

Following the transplant, Diane struggled with terrible side effects, including mucositis in her mouth and swelling from excess fluid. She developed diabetes from taking steroids and was dealing with a persistent fungal infection in her lungs. “It was just one thing after the other,” she says. She’s relieved that most of these issues have improved or resolved completely over time.

Diane attends LBC support groups in Invercargill, and although everyone has different types of blood cancer, she finds them a great way to connect with others – which is especially important now that she’s closed her hairdressing business and doesn’t get to spend her days chatting to clients. “It was such a hard decision to stop working. When they told me it would be at least 12 months of treatment, and being the age I was, everyone said, ‘Why don’t you just live life?’ And I thought, yeah, you’re right.”

Although she still gets quite tired, Diane is feeling well and has been spending lots of time with her grandkids. She’s looking forward to a family holiday on the Gold Coast later in the year – something that her children have been planning since she was in Dunedin Hospital. “It was pretty smart of them really. Going through the journey, on days when I wasn’t good, it would suddenly pop up in our family messages: ‘We’re just booking the theme parks, or we’re just sorting the rental cars.’ Things like that really kept me motivated.”

As well as preparing for her family holiday, Diane is also writing a book about her experience with leukaemia for patients and their support people to read. “When I was first diagnosed, I tried to download or find a book at the library, and I found very little. It wasn’t until I was actually in the leukaemia circle that I had access to more of those stories.”

Her advice for others facing leukaemia is to take each moment as it comes. “Just get through this day – or this hour. When you’re having those tough times, it’s just about getting through the next hour.”

 

“He just knew I needed support”

It was a day that should have been filled with happy memories. But last year, on her son’s second birthday, Tiffany’s world was turned upside down.

“Tommy was really sick on his birthday,” the mum-of-four recalls. “He wouldn’t move, and he had fevers that weren’t coming down with Pamol. The day after his birthday, every time I picked his legs up to change his nappy, he’d scream in pain.”

Tiffany called an ambulance, and her little boy was taken to Waitākere Hospital. After tests and a transfer to Starship, Tommy received a diagnosis no parent is ever prepared for – acute lymphoblastic leukaemia (ALL).

Tommy was started on intense chemotherapy straight away. Later, when the treatment caused him to lose his hair, it meant there was no escape from the reality they were living through.

“For me, that was the most upsetting bit,” Tiffany says. “When Tommy had hair, on the days he wasn’t sick, you could look at him and almost forget he had cancer. But when he had no hair, it was always a visual reminder.”

When Tommy eventually finished his treatment and began maintenance chemotherapy, Tiffany felt like the worst was over. But it wasn’t long until the family was thrown another curveball – this time, a serious fungal infection in Tommy’s lungs. The two-year-old was back in hospital for seven weeks while the infection was brought under control. “I’ve never had more anxiety in my entire life than when we were waiting to see if the antifungal was working.”

Tiffany struggles with all the things Tommy is missing out on due to his weakened immune system. “We’ve basically been living in a cancer bubble for his whole treatment,” she says. “We can’t go to playgrounds where Tommy can play with other kids. We’ve got to keep driving until we see a playground with nobody on it – it’s sad.”

One person who has made the journey less isolating is Tim from LBC’s support services team. “Tim is wonderful. He’s there any time we need. He was the one that helped me through Tommy’s fungal infection. There were points where he must have noticed I went quiet, and he’d reach out – he just knew I needed support.”

Tommy’s sister, Charley, has also been supported by LBC. She attends Kids’ Club, which is a support group for children who have a sibling or parent with blood cancer.

Tiffany has found comfort in connecting with others in LBC’s Facebook groups, and is grateful for grocery vouchers provided by LBC, which have made a difficult time more manageable.

With Tommy now back on maintenance chemo, he’s due to start kindy soon – which both he and his mum are very excited about.

“I’m feeling positive. Things are back on the right track!”

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.