Saturday, November 28, 2009

Love and locks

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By KIM KNIGHT - Sunday Star Times
Last updated 05:00 29/11/2009

Photo: Kevin Stent
Hair goes: Becs Todd, Shanell Christian and Catherine Ternent are shaving their heads for the Child Cancer Foundation.
Kyah Milne

WAS IT her pregnancy-induced craving for barbecue-flavoured crackers? The cola drinks she consumed through gestation? That moment, when her brother was on life support after a car crash, she asked "whoever was listening" to take her peanut-sized unborn daughter instead?

"My big thing was, what did I do to cause this?" says Shanell Christian. "And of course, I did nothing."

Shanell doesn't know why her daughter got cancer. But a year after the death of Kyah, the little girl she calls her butterfly princess, the voice in her head tells her: "You can't change anything. Focus on the now."

Kyah would have turned four yesterday. Her 32-year-old mum wonders what her voice would have sounded like, how long her hair would have been.

"I've got her baby book at home, and it ends at three. It's supposed to be her first five years. Her first day at kindy, her first day at school, who her teacher is. I could make it up, but, you know, that stuff is never going to be filled out..."

Shanell's family has been to hell and back since Kyah was diagnosed with stage IV neuroblastoma, but today, on a comfy couch in a sun-soaked Wellington house, she is as ordinary as the next person.

Everyone in this room is a cancer mum.

Next week, Shanell Christian, Catherine Ternent, Becs Todd and Alma Te Maipi will shave their heads to raise money for the Child Cancer Foundation. Only three of them made it to the Sunday Star-Times photo shoot – Alma was on a train heading north to her ill father. Back home, her 18-year-old son David, who has rhabdomyosarcoma or soft tissue cancer, has been told he may have as little as two months left to live.

"His cancer has gone from his head, to his legs, to his lungs," his mother explains, on a cellphone that cuts out as the train enters a tunnel. "I'm just not ready. He doesn't mind talking about it. But I have a hard time. Planning my son's funeral."

A party, instead? There'll be a bit of an open home soon, says Alma. A $1.50 party – a joking reference to a disputed bus fare that recently landed her son, who only wants to be allowed to be a teenager, in trouble with the police.

"I didn't know whether to hit him or hug him or yell or cry."

David and his "bucket list" – the tattoo, the bungy jump and the sky-dive – have received national media coverage.

Now it's his mum's turn. She hasn't cut her hair for 11 years. "But the Child Cancer Foundation has been there for us from day one. It's kind of like giving back from our family, for other families."

Catherine Ternent is thinking of it as a new beginning.

"It's time for a fresh start." Her now nine-year-old son Sean was diagnosed with non-Hodgkins anaplastic large cell lymphoma in 2006. She was in Fiji, steadying a rocky marriage, when he got sick.

Catherine and her husband stepped off the plane and into Wellington Hospital.

"And that was it for the next 18 months."

Nine tiny words for the nightmare that followed, for the day her older son donated his bone marrow to his younger sibling, for the time when Sean's body rejected the transplant, for the breakdown of her marriage, to now – two years in remission and counting.

It all happened so quickly. "His breathing changed, and then he was on oxygen and they're moving him to intensive care, and the next thing he's full of tubes and God knows what and the next morning the doctors are telling us they don't think he's going to make it, and we're on the Life Flight to Starship hospital and then we get called into the bad news room. And they're saying, definitely, it's cancer."

It's Shanell who fetches the tissues when the memories make Catherine cry. When Kyah was dying, it was Catherine and Becs (two days into a brand new job and fitting this interview into her lunchbreak) who did the shopping and filled the house with baking.

What happens to a mum when their child gets cancer? "You become that lioness," says Shanell. "You will fight to the death."

Her relationship with Kyah's father, Jason, has not survived. She shares custody of their two sons, Jordan and Kaleb.

"When Kyah got sick and become my sole focus, everybody took a back seat, including my boys. When she died, everything shifted back to them, how were they coping...but it never came back with Jason. We'd grown apart."

Experts say this is common. Many relationships don't survive the loss, or extreme illness, of a child.

"It does either make you or break you as a couple," says Catherine.

Becs Todd's husband Matt died in 2006, after battling a brain tumour for three years. In April last year, their son Liam was diagnosed with an extremely rare form of cancer in his sinus cavity. It was a dental health surgeon who had to break the news. Liam had an abscess and they took a biopsy. When Matt's oncologist walked into the room, Becs knew she was facing the worst case scenario – again.

"And unfortunately for Liam, he had already had that experience with cancer, so he knew it could kill you."

He talked about it just the once: "He said, `mum, I don't really want to die'. And I said, `that's all right mate, I don't want you to die either'."

A 10-hour operation removed the tumour and all the bone in his cheek and upper jaw. His face was reconstructed using bone from his leg.

"Because his tumour was so rare, we don't know what the outcome will be, but so far, he's 18 months clear and there's no sign of any residual tumour on the scan, so we'll take that."

Liam heads to Auckland this week, a nine-year-old rugby playing contender in the Attitude TV "courage in sport" award.

"It's the same day as the head shave," says Becs. "So I'm going to the ceremony with a bald head..."

The former police sergeant, who is retraining with Ernst and Young's audit service, says her son "has taken life by the scruff of its neck, and I'm really proud of him".

Everything has irrevocably changed – but Becs doesn't dwell on the negative.

"I'm a mum, and my son and daughter need me. It doesn't matter that their bedrooms are messy, that they haven't eaten their school lunch. What matters is they're still standing there living, breathing and you've still got them in your life."

THE REMARKABLY frank blog that Shanell Christian started to inform friends and family about Kyah (which eventually caught the country's attention) is still, intermittently, updated. November 19, the anniversary of her daughter's death: "365 days ago... I was gently placing Kyah into the transfer car to be taken away to the funeral home... it was our first time away from her in a long time. But it was to be the start of our new forever."

In those final weeks, her son Jordan stood in front of his class, to give his daily news report. "My sister is going to die any day," he said matter-of-factly.

Kyah's brothers, she says, are very resilient. "They learnt what death was at a very young age. I wrote in the journal that I was gutted it shattered their innocence, because they didn't feel safe in the world, because if their little sister could die, anything could happen. And now they're going through the whole separation thing. I am very, very proud of them."

There is an old cliche – you can't keep your kids in cotton wool. But it's hard, say these mums, when your kid has had cancer. An unexplained bruise? Tiredness? "You just want to race in and get tests done," says Shanell.

It is, they say, amazing what a human being can cope with. "If someone had said to me, `this is what's going to happen, this is how you're going to react' – I would have either hit them or fainted," says Shanell.

She follows no religion, has no faith. "And if I did, I wouldn't now. It's not so much that we lost Kyah, but the suffering she went through in the last four weeks. She was just a shell. It was just disgusting to watch this person who had been so lively and vibrant, just sleep and be in pain."

In the days after Kyah's death, a white, butterfly-shaped moth flitted about the house. Last December, when Shanell and her husband escaped, unhurt, from a car crash, a monarch butterfly circled them until the police arrived. You look for signs, she says. And sometimes you find them.

These mums live life a day, a week, sometimes a month at a time.

Financial strain is a given. Alma is taking the train north because she can't afford an airfare. Catherine is shifting house and her rent is about to rise $20 a week. "I'm thinking, what can I cut out now?" They have all seen families slide backwards when parents are forced to quit work to care for their children.

But here's another cliche: "Money certainly can't buy you everything," says Shanell. "It can't buy you your child's life back, it can't buy you a wrong diagnosis. Money certainly didn't buy me happiness."

Petrol vouchers. Groceries. Outings for kids who have cancer, and their siblings who don't. Support workers. A house, with a room full of DVDs and games, where it's OK to talk about your child's toxic pee and the vomiting and diarrhoea and the very real fear that they might just die. Those are the things cash can buy.

Every 2 1/2 days, a New Zealand child will be diagnosed with cancer. At last year's "funrazor" more than 700 people lost their locks to raise more than $500,000 nationwide. These four women hope their efforts will lift the Child Cancer Foundation's coffers by at least $50,000.

Listen to their stories and think of them as brave and amazing and capable of anything. But going bald? They're terrified.

Catherine: "I was touching my hair this morning, thinking `oh my God'."

Shanell: "You talk to other people, and you think, `why am I getting so worked up, it grows back, and we're choosing this and so many people don't get that choice..."'

Alma: "I will probably be in tears."

Lunch has just been delivered to the CCF house. Frittata and ham and egg sandwiches. The women eat, make phone calls to extend childcare, and catch up on each other's news.

Shanell's friends say her experience made them appreciate their kids more.

"They say, `when my children draw on the wall, or tip paint on the TV, I think, you're still here and Kyah's not'. And I'm thinking, `really? God, if my kids did that, I'd scream'."

Catherine sums it up: "It's amazing how normal life is."

And yet, "attached to that is all the stuff that's gone before, that we've experienced over the last couple of years".

Her son tells people there is a one-in-a-million chance his cancer will come back.

"But maybe a piece of you is always a bit cautious and always will be, as much as you want to be positive."

Shanell's brother died in ICU, two weeks after his car accident. It was, she says, a completely different kind of grief. "You'll never ever love anybody else like your children... you plan a future for them, so to be diagnosed and lose that fight, I don't know if you can compare that to anything. Not even if I was diagnosed."

Catherine: "You'd be thinking about your kids!"

They laugh. Bittersweet. Because they are brave and amazing and capable of anything.

Funrazor events take place nationwide this week. Shanell, Catherine, Becs and Alma will lose their locks live on TV1's Good Morning show, Thursday, December 3, from 9am. To donate directly, go to:

For information on child cancer: