Real Life

All Black wigs out for child cancer

As Jerome Kaino lends his support to Wig Wednesday, we speak to one family who know the realities of child cancer all too well.

Don't be surprised if you see All Black Jerome Kaino wearing an outrageously bright wig today - it's for a good cause.

For the first time in New Zealand, Child Cancer Foundation is holding the fundraising Wig Wednesday and Kaino is one of a handful of high-profile ambassadors helping the cause.

Every week more than three New Zealand families are told their child has cancer and at any given time the Child Cancer Foundation is assisting more than 500 families nationwide. The Child Cancer Foundation provides practical, financial and emotional support to each child and their family, from the time of diagnosis, throughout treatment and beyond.

The Foundation aims to reduce the impact of cancer by offering tailored, practical services that ensure children and their families are supported, informed and remain connected at every stage of their cancer journey.

We spoke to one family who know exactly how much help the Child Cancer Foundation can provide. Here is Ryu Kireka's story, told by his mum, Ana:

Ryu is seven, but he was diagnosed when he was four. He has the T-cell type of acute lymphoblastic leukaemia (T-ALL), which is pretty rare and pretty aggressive.

The treatment routine goes something like this: every month Ryu goes into the clinic for chemo. Every third month he goes in for a lumbar puncture. He has oral chemo every single day. Once a week he has another dose which is a different one to the stuff he has every day. Then there's one week of steroids after his visit to clinic.

Ryu is a proud ambassador for the Child Cancer Foundation.
Ryu is a proud ambassador for the Child Cancer Foundation.

He’s had a relatively good run with it all. He lost a bit of function in his legs because of one of the chemotherapy treatments, but he hasn’t had too many side effects. He never lost his hair – don’t ask us why, we just don’t know. He had about four or five hair cuts in his first year of chemo!

This is his first proper year he’s had at school. Last year the illness meant he stopped and started, so he would have two days at school and two days being home schooled until he started feeling comfortable enough that he could go for the whole week. Now he goes every day.

I just spoke to his teacher today, and she says he’s finally settled into school life. He’s so used to being home that he’s finally realised you have to listen to the teacher, and you can’t just walk off and do whatever you like, like you do at home.

The Child Cancer Foundation started helping us a little bit after he first got diagnosed. At first I was just in denial about it all. Then when I started to struggle – not only emotionally, but physically – I just said, okay I need help.

They didn’t push us into getting help, just gave us info and said, ‘when you’re ready’, which was what I needed. I didn’t need people forcing it on me at the beginning.

Just knowing there’s somebody that knows what you’re going through, or who can point you in the right direction, is really good.

Ana and Ryu
Ana and Ryu

At the start it was help with vouchers and things, and we needed that help because there were some big change we hadn’t prepared for. But now we’re settled in the way things run, and we know what to expect, so just knowing I can pop in there and have a coffee, sit and have a yarn is amazing.

Right now, CCF are helping us pay for swimming lessons with a personal development grant. The lessons are helping Ryu remember how to use his legs properly, and get a bit of strength in them.

He got given a bike through an organisation that was working with CCF, too. That’s been helping him with his legs, getting them working, cos he’d forgotten how to ride a bike throughout treatment, as well.

Ryu has two younger brothers – Calvin (8 months) and Michael (2) - and a 10-year-old cousin, Kobe, who grew up with him. They are like brothers and do everything together, so Kobe does things with CCF too, like the sibling camps, where they get to stay overnight somewhere and talk about how they feel - and everyone will listen.

When Ryu first got diagnosed, his cousin had no clue what was happening – they were together every single day and then his cousin disappeared, so the sibling beads, which all have different meanings, helped Kobe understand what was happening with Ryu. He was kind of just freaked about it all.

We’ve been on our journey for almost three years now, but we have only got six months to go. On Christmas Eve this year, Ryu's treatment is all done.