Emma Watson knows words like neutropenic, radiation and blood transfusion.
The three-year-old likes My Little Pony, wants to be a fairy, and generously shares her cup cake stash with the Taranaki Daily News.
Emma also has leukaemia.
Her mother Joanne says if the house was on fire, she would probably grab Emma's Beads of Courage on the way out.
"To Emma what's most important is the beads. She gets one for every procedure she's had. Sometimes she says `I can't do this' and I show her how many she's already got, what she's gone through so far," Mrs Watson said.
Emma has nearly 2000 of them. Their length swamps her small form, as she lies on her hospital bed following a blood transfusion.
For Emma, the black beads represent injections – of which Joanne has given 180 herself. The beads are one of the reasons why Emma's parents agreed for the New Plymouth preschooler to become the face of this month's national Child Cancer Foundation (CCF) Appeal.
"I had to shut my business down the day Emma was diagnosed. While we've had amazing support from family and friends, even that isn't enough to cope with the day-to-day expenses we've incurred. CCF have helped with things like fuel and grocery vouchers."
Practical things are important for the family, who are constantly back and forth between their New Plymouth base and Starship Hospital in Auckland. Joanne and husband Mike have six older children between them – Emma is their "combined seventh". She was diagnosed in January last year, 10 days after they were married. After more than a year, the number of nights they've spent together as a couple is low.
"It just isn't natural, we've never really been together for a long period of time. Whichever parent is home is dealing with all the normal stuff of teenagers, but the other is with Emma."
And yet, they are positive. Each day is a gift. They use a lot of humour. And they are passionate about CCF.
"They fill in the gap, they give us all the practical things and also the emotional support. They just do so much, they're there for us no matter how long this is going to take. We were coping hour to hour and they were right there looking after the rest of the family."
Mrs Watson describes it as a journey.
Last October, during intense chemotherapy, Emma contracted an antibiotic-resistant strain of the bacteria pseudomonas. She was evacuated to Auckland, had two heart attacks, multiple organ failure and her siblings travelled there to say goodbye.
Somehow, Emma pulled through. Getting through that means the family has already faced their greatest fear – Emma losing her battle. Now, she is in a phase called maintenance, which means all the intense chemotherapy has finished.
"So we give her oral chemo every single day and twice on Thursdays now. She should be more settled, but we just never know what's going to happen day to day.
We have a new normal now. At no point do we ever take for granted we're in a cruisey phase. She's not in a predictable pattern."
This Saturday Mrs Watson will be outside Pak 'n Save in New Plymouth collecting for the appeal.
If she can, she will take Emma's beads with her.
"They're such a powerful visual tool. When people see them, they can understand what she's been through. No two child's necklaces will be the same – they're specific to their journey."
Mrs Watson said in the last year, in Taranaki alone, eight children have been diagnosed with cancer, all around Emma's age. "I feel quite strongly that early diagnosis raises our chances of beating it. We never thought it would happen to us. If people do know that it's not as rare as you think, it can make all the difference."
Doctors say that Emma is a miracle. They also say she is gracious. As we leave her hospital room, I thank Emma for the cupcakes and letting us talk with her Mum.
"You're welcome," she said. Three children are diagnosed with cancer each week in New Zealand and collectively undergo a total of 75,000 treatments and procedures annually.
DONATION DETAILSToday is nationwide Beads of Courage Day. To donate:
VISIT: childcancer.org.nz to make a secure online donation
TEXT: bead to 206 to make a $3 donation
CALL: 09004CHILD (0900 4 24453) to make a $20 donation
GIFT: Gift a Bead of Courage to make a $5 donation at any Farmers store
- Taranaki Daily News
