Juliet Rowan is a reporter for Bay of Plenty Times Weekend

Big read: Little fighter Joshua Dale

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Last year, 154 New Zealand children were diagnosed with cancer - nearly half under the age of 5. Juliet Rowan meets Te Puke 4-year-old Joshua Dale, who has acute lymphoblastic leukemia, the most common form of childhood cancer.

Joshua Dale has 800 Beads of Courage.

Each one represents a poke with a needle, a blood transfusion, an anaesthetic or chemotherapy.

"I'm good at fighting monsters," Joshua says.

"Yes, I know you're good at fighting monsters," his mum Cathy agrees.

Joshua is 4 years old and half his short life has been spent fighting the blood cancer leukaemia.

"I can fight big monsters," says Joshua.

"What's the big monster you fight all the time?" Cathy asks.

"Cancer," Joshua says in a loud voice. "He's the worst bad monster. He steals my bone."

Joshua Dale is two-and-a-half years into a three-and-a-half year course of chemotherapy. Photo/John Borren
Joshua Dale is two-and-a-half years into a three-and-a-half year course of chemotherapy. Photo/John Borren

Cathy smiles and says the concept of bone marrow is a little over the head of a 4-year-old, but with hospital stays, needle jabs and a cocktail of medicines his reality, Joshua gets the idea.

The Bay preschooler has acute lymphoblastic leukaemia, the most common cancer in children.

The bone marrow of sufferers makes too many immature lymphocytes (a type of white blood cell), and the disease worsens rapidly if untreated.

According to the National Child Cancer Network, 59 children under the age of 15 were diagnosed with leukaemia last year, 42 in Joshua's age group.

The reasons for Joshua's cancer are unclear - the family has been told it is not genetic or environmental.

Before his diagnosis, Joshua was covered in bruises, which Cathy and husband Steven attributed to him being a rough-and-tumble boy but which they now know were a sign of his deteriorating blood count.

Joshua was diagnosed at age 2, and although he is past the most intensive phase of his treatment, he still needs daily oral chemo and monthly intravenous chemo to fight the disease.

Cathy keeps a record of all his treatments and it makes harrowing listening:

"Twenty-two blood product transfusions, 68 nights in hospital, 23 lumbar punctures, 23 ED visits, 30 scans and x-rays. And he's lost his hair six times," she says.

Joshua's colourful strands of beads - black ones representing needle pokes and red ones, transfusions - are now so heavy he refuses to wear them.

"I don't know if it's on purpose - the weight of everything he's been through - but it's quite significant," says Cathy.

Instead, Joshua lies on the ground with the beads draped around his head. "I'm going to outer space," he announces. "I'm going to be an astronaut."

The idea of his cancer is hard to reconcile with the happy boy in the "Young and Wild" sweatshirt rolling around on a floor in Te Puke.

The family moved to the town in March and Joshua appears to love his new home, wrestling with little sister Rosalie below a photo frame inscribed "Live, Laugh, Love Every Day, Every Moment".

Joshua is tall with a head of bouncy brown curls, something chemotherapy often destroys.

"There was one particular chemo drug he had, it just all came out. He was completely bald. He kept his eyebrows and eyelashes but it was literally the day after he had it and you'd run your hands through his hair and it was [coming out in] massive clumps. It was horrible because before he got sick he had the most beautiful hair - blond with these gorgeous curls - and he was just the cutest little 2-year-old," Cathy says.

Remembering times before Joshua's leukaemia is almost like remembering a different life for his mum.

Hospital is now "a second home", her and Joshua's latest stay an unscheduled visit two weeks ago after Joshua got shingles.

They ended up admitted to Tauranga Hospital for a week and a woman who saw Cathy, 29, doing her washing said, "You're way too comfortable here."

Cathy says Joshua's cancer has made her a "recluse" and "germaphobe" and she worries what it will be like going into "the big, wide world" once his treatment is finished.

"It's almost like having a safety net having hospital there. A lot of parents have said it's very bizarre when their kid comes off treatment because it's been your life for years. It's not like it's a week. It's going to be 31/2 years we've been going through it."

Joshua is a year away from finishing chemo, the final treatment scheduled for July 21, 2017 - Cathy's 31st birthday.

"It'll be an awesome birthday present. Awesome," she repeats.


The date of Joshua's diagnosis also lingers sharp in the mind of Cathy and Steven.

"It was April Fool's Day," says Cathy.

Says Steven: "2014 was the worst year of my life."

Rosalie was just two weeks old when the couple learned Joshua had cancer.

Then living in Auckland, they were already grappling with several major life events, beginning with Steven being made redundant.

Then Rosalie was born, but joy turned to despair when Cathy was diagnosed with postnatal psychosis and admitted to hospital.

She was back home on April 1, but in "a fog of drugs" and not permitted to be alone with her children, leaving Steven grappling with a new baby and desperately ill toddler.

Before Rosalie was born, Cathy worked fulltime as a marketing assistant for a scientific supply company and Joshua was in daycare. She has been unable to work since he got sick, saying his leukaemia was initially mistaken for a virus.

Joshua Dale with mum Cathy and sister Rosalie. Photo/John Borren
Joshua Dale with mum Cathy and sister Rosalie. Photo/John Borren

"He got a couple of fevers at daycare. He got really sore legs and was really tired, and we all thought he was upset with the fact I wasn't there and having a new baby sister."

He was taken to a doctor, who put his symptoms down to a virus, but Joshua's daycare teachers felt something serious was wrong and urged the family to return and request a blood test.

"The doctor felt his spleen or liver, and one of those was enlarged, and he couldn't give us the blood form fast enough," Cathy says.

At 10 o'clock that night the phone rang and Steven answered. He was told to take Joshua to hospital immediately.

Steven stayed in Starship children's hospital with Joshua and Cathy's mum took Rosalie.

"I basically didn't see her for the first six months of her life," says Cathy.

"I was not myself at all. It was horrible."


It was the beginning of the family's long fight against Joshua's cancer, beginning with steroids and chemotherapy.

The steroids caused his weight to balloon and the initial round of chemo left his hair patchy.

"He's still on oral chemo every single night and IV once a month, and he has intrathecal once every three months [when] they inject chemo into his spinal fluid," Cathy explains.

Each spinal injection requires a lumbar puncture done under general anaesthetic, and while Joshua's other treatments can be administered at Tauranga Hospital, this one must be done at Starship.

The family only felt confident to move from Auckland because Joshua is responding well to treatment and is far enough along in his course.

Despite having progressed to what is known as long-term maintenance, Joshua is still constantly tired and suffers "drop foot", a side effect of the chemo drug Vincristine which causes his feet to roll inward.

"It's quite common in the kids to have their leg muscles affected by that particular drug. He struggled with it [and] at the beginning, he couldn't walk for a couple of weeks."

He also needs a five-day course of steroids monthly ("he gets a Buddha belly and his cheeks puff up and go rosy red"), and on Monday nights, he has to take a weekly chemo drug that makes him feel terrible.

He begs his parents not to give him that drug, knowing it makes him feel sick, but mostly he takes the punishing regime in his stride.

"He copes amazingly," says Cathy. "He just accepts it and knows the doctor is making him better."

Joshua Dale with mum Cathy. Photo/John Borren
Joshua Dale with mum Cathy. Photo/John Borren

As she speaks, Joshua appears at her side, cuddling her tight. Cathy says they are "attached at the hip", and he refused to let his dad stay during his most recent hospital admission.

"It had to be me so it was seven nights cooped up in a tiny hospital room together."


Cathy is full of praise for Tauranga Hospital and the Bay.

Steven's parents live at Papamoa and the Dales decided to move south after visiting and enjoying the change of pace.

Soon after Cathy and Steve bought a house in Te Puke, three volunteer firefighters from the town competed in the Sky Tower stair challenge to raise money for Joshua, the gesture making the family feel part of "a real community".

Cathy has found two "lovely ladies" who provide in-home care for Joshua and his sister (the cancer put an end to crowds at daycare), but Joshua is usually too unwell to make it more than once a week.

His compromised immune system means he is susceptible to bugs and has been hit hard by illness since shifting to Te Puke, contracting norovirus and a chest infection, as well as the shingles.

Appearances are deceptive, though, and despite a runny nose on the day Bay of Plenty Times Weekend visits, the 4-year-old looks healthy.

Cathy says if he is not sick, the month between each IV chemo in hospital can lull her into forgetting about his cancer.

"[But] going into hospital once a month you're brought back to reality."

For Joshua, the reality is that his condition can change in an instant - and often does.

"The thing with kids like him, if they're going to go downhill, they go downhill fast ... So basically if he gets a fever, we're off to hospital."

I didn't know anything about childhood cancer until Joshua got sick.
Joshua's mum Cathy

Being confined to a wardroom can be tough on a 4-year-old, as are some of the procedures.

He has a port in his chest to administer IV medications, Cathy saying his veins would otherwise collapse under the constant pressure.

"Even now, he freaks out with port accesses and de-accesses, but everything else, he's fine," she says. "He walks into theatre and says hello to all the anaesthetists, tells them where to put the sleeping milk, which is what he calls the anaesthetic. He's like, 'Good night Mummy, I'm going to bed.' Everyone in theatre loves him because he's just so cruisy and relaxed."

While Joshua is au fait with the hospital drill, 2-year-old Rosalie feels his and Cathy's absence keenly.

"She loves her brother and she's at the age now where she has more awareness of everything, and especially me going for seven days, it's hard on her."


The job of holding the fort goes to Steven, who is at work when we visit, but talks two nights later on the phone.

"He's amazing," Steven says of Joshua. "He's worth waking up for every morning. And so is Rosalie too. She's been through the wringer and back. She might not be sick but she got passed around like a rugby ball for the first couple of months."

Steven says one of the struggles of having a child with cancer is effective parenting of all the children in a family.

"When Josh was in hospital a couple of weeks ago, Rosalie wanted to go to her hospital because she felt she was missing out," says Steven. "It's a balancing act to keep her growing but you can't say no to her and give into him."

When Joshua was diagnosed, the oncologist spoke to Steven about the importance of boundaries for child cancer patients.

"One thing the doctor said was, 'Yes, they've got this, and you need to do this and this, but you've still got to discipline them at 14'."

It is 8.30pm when our chat begins and Joshua is making noises in the background, needing to stay awake to take his medication at the prescribed time.

"He used to be in bed at 6 so sometimes he comes up at 7 o'clock [and says] 'I'm tired, I want to go to bed.' You say, 'Well, you can't'," says Steven.

It is a reminder of how Joshua's cancer never sleeps and the constant demands it makes on his parents.

Says Cathy: "I didn't know anything about childhood cancer until Joshua got sick and I think that's sad that people don't know how common it is and how much it affects not only the kids, but their families, their siblings, friends, everyone. It affects a whole community when a child gets sick."

Steven agrees, saying when Joshua was first on steroids, he had hourly cravings for "pasta, peas and cheese" which the oncologist advised Steven to cater for.

"One, 2, 3 o'clock in the morning he'd eat pasta, which I thought I'd cooked enough of at 3 o'clock in the afternoon. It's like, 'How could you have gone through a kilo of pasta, a kilo of peas and a kilo of cheese in 12 hours?'"

Steven jokes that 2014, with all that it brought for his family, was a "vintage" year.
When told it's admirable he still has a sense of humour, he says. "You've got to laugh. If you don't laugh, you'll cry."

Steven is delighted to have moved to "this beautiful part of the country" and have a job with Towbar Guy, a mobile tow bar installation company.

But he admits it is difficult being the sole breadwinner and echoes Cathy in saying the impact of Joshua's cancer stretches to his employer and beyond, particularly when Joshua is in hospital and he needs time off and help to care for Rosalie.

With Joshua responding well to his treatments, can Steven see the light at the end of the tunnel yet?

"No, there's still a year to go. A lot of families say the last year's the worst because your children are so broken, so depleted and so immune-deficient. I suppose there's a little glimmer of light but [it's a matter of] taking every day as it comes."

Steven and Cathy have been told Joshua has an 80 per cent chance of beating the leukaemia, and although he is classed as high risk and there is always the chance of relapse, Cathy says they have good reason to be optimistic.

"Of all the leukaemias to get, he's got the best one at the best time, so the prognosis is really good."


During their journey, the family have forged strong friendships with families of other child cancer patients.

"We've [also] lost a lot of friends," Cathy says. "It's just part and parcel of making friends with people who have cancer. Some of the kids don't make it. It's very sad."

By contrast, some of their old friends cut ties in the wake of Joshua's diagnosis.

"I guess some people just couldn't cope and they didn't know how to be around us any more. I lost my best friend. She just disappeared."

Joshua Dale's Beads of Courage. Photo/John Borren
Joshua Dale's Beads of Courage. Photo/John Borren

For Cathy, the hardest part about Joshua's cancer is the social isolation. Although she makes an effort to talk to neighbours, she is unable to take her kids to coffee or play groups because Joshua is not supposed to be around crowds of people.

"You just don't get out much and it's hard because you want to say to people 'come over, come over, come over' but even doing that, you're taking the risk of them bringing bugs in here. People who don't have an immune-suppressed child don't realise that just a simple cold can be so dangerous for kids like Josh."

Joshua turns 5 in February and Cathy is hopeful he will go to school but says her and Steven are in the process of assessing the risk.

Since their son became ill, Cathy has become a staunch advocate of immunisations and feels dismayed every time she reads about an outbreak of measles or other disease for which there is a vaccine.

"There are kids out there who can't be immunised and if they get these diseases, they will die. Because of that, kids like Joshua can't go to the supermarket. We can't go to the mall without having that cloud over our head, 'What if one of these people isn't immunised and is going out and about with something that could kill'?"

It is a subject she tackles on her Facebook page, Joshua's Leukemia Journey, which she set up to keep family and friends updated on Joshua's progress by recording his treatments.

" I just wanted people to know about him and increase awareness of childhood cancer."

- Bay of Plenty Times

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