"Am I going to die?"
It is a question you are never prepared for your child to ask.
It is a question you are never prepared to answer.
Mount Maunganui mum Desiree George recalls the moment her 9-year-old daughter Avamarie spoke those words. It was five months ago when the fit, happy, hair-to-the-waist Omanu school girl was diagnosed with deadly stage four kidney cancer which had spread to her lungs.
Single mother George could hardly process the blow the doctors had delivered.
"We went to the doctors thinking she had a kidney infection. Even when they took me into a room and sat me down, I still thought they were just going to say something about antibiotics or something. As soon as they said cancer, I couldn't hear anything else. I just went into shock."
This experience paled compared with having to break the news to her daughter.
"That was the hardest thing I have faced in my life. The doctors offered to tell her with me. But me and Avie, it's just always been us two in the world. I had to tell her myself. She knew something was up. We'd had test after test, but she hadn't asked what was up,'' George says.
Avamarie was in the bath. Her mother sat on the edge and told her: "The doctors have found a big lump on your tummy. It is making you sick, so they have to make it smaller with medicine, and then they are going to take it out. Do you know what the name for it is?
''She looked up at me. Her eyes were so so scared. I have never seen that look in anyone before and I never want to see that again.
''It was real fear, and when I looked right back at her I knew what she saw in my face was the same raw terror.''
Avamarie asked her: ''Mum, do I have cancer? Am I going to die?"
Retelling this moment is tough for mum and daughter. It is the first time the two have spoken - even to each other - about the significance of the past five months.
"It has been such a whirlwind of tests, surgery, chemotherapy, more surgery, radiation, back up and down to Auckland, in and out of Starship, in and out of Tauranga Hospital.
''We haven't even been back to our house since the day we first went to the doctors five months ago. We've been so busy with treatments and appointments that we haven't stopped to think."
Mother and daughter sit close to each other on a sofa in George's mother's Mount oceanside apartment where they have been staying since that day in January when both their worlds changed forever.
They had to give up their own rental home, leaving Avamarie's other dogs, her beloved chihuahuas Floyd and Mate in the care of friends.
The sun streams outside on to a crystal clear Mount beach. Down below the apartment at Mount cafes, mums chatter over soy lattes and smashed avocado after their walk up Mauao. Their kids are at school. Avamarie wishes she was too.
Avamarie - or Avie as she is known to family and friends - sits cross-legged on the sofa, balancing her laptop with her jet black pomeranian, Bear, on her knee.
At first glance you think she has headphones in, but it is actually a feeding tube that goes into her left nostril, sucking up pale liquid from an industrial-looking machine at her feet.
That liquid is Avie's breakfast, lunch and dinner. She is hooked up to it 24 hours a day.
"I can't eat, I want to. But with chemotherapy I have lost my taste and even food I loved tastes bad."
Completely bald apart from a few defiant blonde tufts at the back of her head, with long dangling skull earrings and hundreds of courage beads, Avie pulls up her pink zebra top to show a 20cm raised pink angry scar which cuts right across her tiny torso. It is as though someone has tried to saw her in half.
"Yeah, it's where they took my kidney out, and all the lymph nodes around it."
Her skinny arms are peppered with tiny marks from scores of blood tests.
She reveals the hole under her right arm where the chemotherapy "juice" is pumped into her body via a portacath which sits underneath her skin,
Mum George shudders and turns away and Avamarie laughs.
"Mum is such a pussy, she couldn't handle it when they put that in my neck. She hates needles, they make her feel sick.
''Even that very first time I went to the doctor and had loads of blood tests, when we got in the car, Mum put the seat back flat and leaned back and closed her eyes, and I was like, 'Mum what are you doing? I have to get to school!', and she was like, 'Oh I feel dizzy after those blood tests' - even though it was me that had them."
They both giggle remembering.
Back then the pair didn't know what was in store.
If mum was dizzy after one blood test, what would she be like after a 25-week cycle of intense chemotherapy, six hours of surgery, epidurals, endless MRI scans, radiation, infections, rashes, dizziness, vomiting, weight loss, and pain.
They stop laughing.
Avie fiddles with her bracelet, turning it round and round quickly on her wrist. She looks down, her bright smiling face suddenly contorted in pain, and her tiny body starts to shiver.
Is she in pain? Is she cold?
She shakes her head.
George puts her arms around her and carries on with the story.
"I sat on the edge of that bath, and she looked right in my eyes and asked me, 'Am I going to die?' And I said, 'No Avie, you are not going to die, because I am not going to let you die.' "
As George says the words, the tears, pain and pent-up grief erupt.
Avie buries her head in Bear's long silky hair and weeps uncontrollably.
Mum also sobs openly, and the pair sit there, arms entwined, heads bent, wet cheeks together, sitting side by side with the sun streaming outside on the Mount beach, just the two of them crying softly until Bear's coat is soaked with tears.
Avie stops sobbing to adjust the tube in her nostril. Bear stands up to shake himself dry.
He licks Avie's hands. She smiles.
"Don't pat him 'cause he will think -'oh I have someone new to lick', and he will be licking your hands all the time."
But Bear doesn't budge from Avie's lap.
George jumps up to get a new attachment from a kitchen drawer that was once filled with cutlery and is now filled with medical supplies.
Avie fixes the plaster on her nose.
"Mum's got more used to it, but she still gets sick when I have to do things like this. Dad is even worse. They are both real pussies actually."
George laughs as Avie rolls her eyes.
Avie wants to talk about her cancer because she thinks it might help other kids going through the same thing.
She doesn't mind if you know it makes her cry sometimes, because she wants people to know it's okay to admit your fear.
"The hardest thing about it all for me is that room where we all have the chemo ... because you see the kids, and their mums and dads, and I feel really sad for them, it's not fair on them, because they are just little kids."
She doesn't want to sugar-coat cancer in a cloud of balloons and pink bandanas - she refuses to wear one - because she wants people to know just how hard and scary it is.
"It is hard. I just want to go back to school. I wouldn't want any kid to have it."
George says they also want to tell their story to help raise awareness of child cancer.
"Cancer is a long, hard, horrible battle. We would like to help others in any way we can."
Avie says however hard it has been, she wouldn't change the path her life has taken. She wouldn't change having cancer.
Why?
She struggles to answer. She shrugs.
"Oh, you know. It just makes you think about things. Stuff we should be grateful for."
That's a big thing for a 9-year-old to think.
She smiles. When Avie looks in your eyes, you feel like she is staring straight into your soul.
She has beautiful serene eyes, like a 100-year-old who has seen life, felt fear, love, pain.
Eyes that have stared death down.
Eyes that light up when she talks about her friends and her pets.
She wants to be a vet. While mum squirmed at all the medical procedures, Avie drank in the detail. She can explain intricately how an MRI scan works. She remembers feeling relieved she didn't spend as long in radiation as the guy who went before her,
"He took ages. I think because he was so sick."
She is bored stuck at home.
Because of her lowered immunity the only trips outside she can make are to the hospital. A self-confessed shopaholic, she misses mall shopping the most. Like most tweens, she loves her labels. Online shopping is not the same she says, because you cannot handle the goods.
"I wish I had a drone with a camera that I could send around Bayfair for me and that it had robot arms so I could make it pick up things so I could look at it."
A courier bag arrives with a Fidget Cube. Everyone at school has Fidgets. But this is the latest thing in Fidgets.
"I like to be different."
A teacher visits a few times a week so she can keep up with school work. She misses her friends.
"Some have been to see me, but not many. I think they are scared."
When she does go out, people stare and she hates that.
"I think it's kinda rude actually."
She shows photos on her iPhone of herself five months earlier, just after she won the Jump Jam nationals. She was so proud. It was the first time Omanu had beaten St Mary's.
Ten kilos heavier, a happy smiling kid. Her long wavy hair down to her bottom stands out.
"When anyone talked about Avie, they always talked about her hair. It was her identity. I can't even remember her ever having a hair cut," says George.
That photo was in November just before she fell ill. She was tired from the Jump Jam. She'd lost some weight - from all that jumping around mum thought.
Then after a sore throat and an upset stomach, Avie was terrified when she got up in the middle of the night and saw blood in her urine.
Mum's initial panic was pacified by the GP who suggested it could be from a kidney infection. She had a blood test and then went back to school (after mum recovered from her dizzy spell) but they were sent "for precautions" for tests at Tauranga Hospital.
"We were there for ages. Then they said we had to stay the night, because they wanted to do a scan, and I phoned my mum and said, 'Oh Avie's got a real bad kidney infection.'
"When they did the scan I was wondering why they were doing her chest as well as her stomach. She had been a bit chesty and coughing, so I just thought oh that's what they must do, look at everything."
The next morning the paediatrician sat George down to tell her they had found a huge 21cm tumour on Avamarie's kidney that was practically taking up her whole stomach.
They were told Starship was waiting for them and they had to get there immediately.
"My mum - Avie's nana - drove us, because me and Avie, we both get car sick"
More giggles.
"I know right? We were worried about being car sick ... you have to laugh."
At Starship a flurry of oncologists and surgeons were waiting.
"They told us that Avie would have surgery soon, but we didn't know how soon. We had settled into our hospital room and were almost asleep and then, a surgeon turned up at our room at 11pm at night to say it had already metastasised to her lungs. "
Over the next month the graveness of the situation became terrifyingly clear.
The intense chemotherapy was tough on Avie's slight body.
She lost a significant amount of weight and had to have the nasal tube inserted before Christmas - her favourite time of year.
Being allowed out of hospital at lunch time on Christmas Day lifted her spirits, but this was short-lived because just a few days after in the shower her long hair fell out almost all at once.
"We thought we were prepared for that but when it came out, almost all in one go in the shower, it literally fell off in two or three massive clumps like she had been scalped. It was a huge big upset for Avie."
After six weeks of initial chemotherapy Avie's kidney tumour had shrunk significantly, and a lot of the masses in her lungs had melted away.
By January 18, she was prepped for surgery. She was scared. George was scared.
"It wasn't just the surgery that was terrifying but it was only then we would find out what sort of tumour it was. Whether it would respond to treatment."
It would take two weeks to hear the news. Avie had to have an epidural for the pain and be repositioned every few hours. After three days she decided she was getting out of bed for a bath. It was the only thing that relaxed her.
Two weeks after surgery, they had the first good news in weeks - the tumour was a Wilms tumour with favourable histology, meaning it would respond better to treatment.
"Avie was happy but she was also sad for another kid we knew having chemo ... he had a Wilms tumour, with unfavourable histology."
What does that mean?
Avie gives that soul-crushing look again with her eyes.
Since surgery she has had another stretch of chemotherapy, and this week in Starship she has begun her final stretch of chemotherapy.
It is not over, but there is now so much to look forward to.
"We are taking things as they come. After this bout of chemo, she will have to have a CT scan every three months. But once the chemo's over, hopefully she will stop feeling so sick, and we can get the tube out.
"I like to think she will be back to school before Christmas."
It is a simple plan. And Avie is looking forward to simple things. Eating icecream. Playing with her pets. Staking out the Mount shops on a Saturday morning. Never doing another colouring book for a while,
"Because everyone sends me colouring books and pens, and that's cool. Or the first ones were cool ... but I have literally done enough coloured pictures to pile as high as this apartment."
Her hair growing back?
She shrugs. She cried when it fell out but says it doesn't seem important now.
"When my hair grows back I want to shave it off again for other cancer kids, I want to show them it's just hair, it doesn't really matter. It's just hair."
AVIE'S PEOPLE
Avie and her mum say now the time has come for Avie's people - that's what she has called her family since she was a toddler - to do their part.
This Wednesday, George, along with Avie's dad, her cousins, uncles and grandparents are taking part in the "Shave Your Lid for a Brave Kid" to support the Child Cancer Foundation, and family and friends have already raised more than $6000 on a page set up for Avamarie by the Tauranga, Lakes and Bays Funrazor programme where families with cancer can raise money for the foundation.
In support of Avamarie's fundraising efforts her school, Omanu Primary, is doing a wig day as part of the Child Cancer Foundation's national Wig Wednesday on June 21.
"The Child Cancer Foundation does amazing things for these amazing little people. We feel blessed to be given the outcome we have been given so far, and we just would love to do our bit for others," says George.
"We've both really been inspired by the work of the Child Cancer Foundation. The people there help maintain hope and provide help with emotional and practical support. But also the little things you wouldn't even think about. Sometimes people ask, 'Oh what can they do?' But the best thing for me has been when people just come round and do things, because even when you have cancer, the humdrum things of life go on. The bathroom still needs cleaning."
Having a child with cancer is not only stressful from a life-and-death perspective - from the prospect of losing your child - but often the parent has to give up work. Desiree had to give up her job and has been unable to work since while caring for Avie.
"It's hard being a single mum, but I am lucky I have my family. We just want to do this to show other families that we care. The more people who understand about cancer, about what it is like for someone to battle a series illness, well I think that makes the world a better place, it makes people kinder."
The pair take a stroll over to the beach. A couple on a bench look at Avie and look away.
They sit, mum and daughter, side by side on a piece of driftwood. George's long pink blonde hair blows in Avie's face.
"Not next week it won't," Avie says, laughing.
How will mum cope without her long pink hair?
"She is going to look so pretty," says Avie.
"I don't mind about my hair. I am just so happy there's hope on the horizon," says George
There's also a big ship coming into port points out Avie in more fits of giggles.
George can't see it.
"She's so short-sighted. She couldn't cope without me. She needs me to see."
They look out to sea. They've stared death down.
They link arms. George has a tattoo on her forearm with a mother elephant and her calf.
Avie wants to get a tattoo one day.
"Hang on, you are not getting a tattoo!" says George.
"Don't worry. Not now Mum," says Avie laughing, patting the elephants on George's arm.
"When I'm much older."
LINK TO AVAMARIE's FUNDRAISING PAGE
https://taurangalakesandbaysfunrazor.everydayhero.com/nz/ava-marie
CHILD CANCER FOUNDATION
Every week more than three children in New Zealand are diagnosed with cancer.
A child having cancer is probably one of the toughest things a family will go through.
The Child Cancer Foundation is helping more than 500 families across New Zealand.
To support these families, Child Cancer Foundation must raise at least $6 million every year. The foundation receives no direct government funding, so achieves this target through national and local fundraising activities and with the help of generous peer to peer fundraisers such as Avamarie's page.
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