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:

Monday, October 26, 2009

The doctor is in

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By KATHERINE NEWTON - The Dominion Post
Last updated 05:00 27/10/2009

Joshua Wood
PHIL REID/The Dominion Post
MAKING LIFE EASIER: Joshua Wood, 13, with his dog Biggles, is one of the children who will continue to benefit from having a paediatric oncologist at Wellington Hospital.

Families and staff at Wellington Hospital's embattled child cancer service have been given hope after the unit's remaining specialist extended her contract.

American locum Sarah Strandjord has been the sole paediatric oncologist at Wellington Hospital since husband and wife team Christian Kratz and Mwe Mwe Chao left in August.

The pair's resignations in April sparked a downgrade of the unit to a secondary service until at least the end of 2010 – meaning children needing acute care had to travel to Auckland or Christchurch for treatment.

Dr Strandjord was due to leave the unit this month, but will now stay until at least April next year.

Children and their families will still have to travel for diagnosis and acute treatment, but in most cases will receive follow-up care in Wellington.

Through a Capital and Coast District Health Board spokesman, Dr Strandjord said she had "discovered many excellent services and people" at the hospital and was pleased to be staying longer.

Tony Wood, whose son Joshua, 13, has acute lymphoblastic leukaemia, said the news was "just fantastic".

"Everybody from early on realised how important and pivotal she was to maintaining some form of care there – and how good she was.

"She gives us enormous confidence."

Mr Wood was also impressed with the support the family received when they travelled to Starship children's hospital for week-long acute treatment twice this year.

Joshua "hated the entire week", but free flights to Auckland, taxi chits, grocery vouchers and being able to contact a Capital and Coast staff member at all times helped make the time away from home easier, Mr Wood said.

John Robson, chairman of the Child Cancer Foundation's central division, was delighted by Dr Strandjord's contract extension.

The region's child cancer service had been a "jumbled-up jigsaw" for years, he said. "Sarah's always been that piece we couldn't find. If she wasn't going to stay we were in a really difficult position."

Mr Robson was keen to "keep the pressure on" the district health board to ensure the unit's long-term future.

Health Minister Tony Ryall announced last week that a new National Health Board to be set up by Christmas would take over national funding and planning of specialist services, including paediatric oncology.

Mr Robson said it was not clear yet what effect that would have on Wellington Hospital's child cancer service. "The fact that the ministry is naming it as a service that's important is hugely positive."

Wednesday, September 23, 2009

Tree plant marks last treatment for cancer

By SARAH CODDINGTON - North Shore Times
Last updated 05:00 24/09/2009

Bianca White
NEW BEGINNINGS: Bianca White plants a tree at Oteha Valley School in celebration of her last chemotherapy treatment.

Bianca White celebrated an end to more than two years of chemotherapy treatment by planting a tree.

The six-year-old who featured on the Dominion Post website with the blog – Growing up with Cancer – held a special planting ceremony at Oteha Valley School to celebrate a new start with her classmates.

The year 1 student was diagnosed with acute lympho blastic leukaemia, a common child cancer in 2007.

Just before her fourth birthday party Bianca was diagnosed with the disease in Wellington.

After problems at the hospital the family made the move to Auckland’s Starship.

Her father Terence White says their daughter does not realise the significance of this day but she is now looking forward and happy.

"I want her to grow up like other kids, ride bikes, fall off and scrape her knees," says Mr White.

He says until now she has grown up with doctors and nurses and now it is time for her to be a child.

Bianca chose all the special people she wanted to be part of her tree planting ceremony, including friends, teachers and the junior school.

She then put a capsule underneath her six-year-old magnolia

When she turns 21 she will come back to dig up a jar that holds memories of the

Her family also celebrated the end of treatment by buying her and her sister Caitlyn a new bike.

During the past two years Bianca has collect more than 1000 beads from the Child Cancer Foundation, each represents a part of her cancer treatment.

Although Bianca is not in the clear she has finished treatment and is only taking preventive medication.

She will continue hospital check ups for the rest of her life.

Sunday, September 20, 2009

Bianca puts all that treatment behind her

By RUTH HILL - The Dominion Post
Last updated 05:00 21/09/2009

Bianca White
THE BIANCA TREE: Oteha Valley School planted an evergreen magnolia to mark the end of Bianca White's treatment. She calls it the Bianca tree.

In the past two-and-a-half years, Bianca White has spent 117 days in hospital, battled many infections, submitted to countless tests and suffered through chemotherapy.

'When will I be done with cancer?" Bianca White asked her mother as they counted out the last few chemotherapy doses.

She has now finished treatment and doctors have given her the all-clear but in some ways, cancer will always be part of their lives, says her mother, Lea.

"I look back to that terrible day when she was diagnosed, and at the time it felt like we'd been given a prison sentence ... But now it seems like it's gone so fast."

Bianca was diagnosed with acute lymphoblastic leukaemia in June 2007, two weeks before her fourth birthday.

"She doesn't remember a time before she had cancer and, in some ways, that was easier, because she didn't mourn for the life she had lost. She just accepted it. But it feels weird for us now."

Bianca is enjoying not having every meal timed to fit her chemotherapy schedule. And she was surprised recently to learn the port in her chest (for intravenous medication) will soon be removed. She thought it was part of her body.

Mrs White has chronicled Bianca's ups and downs on her blog Growing Up With Cancer on and attracted more than 8200 hits in the past two months.

Watching your child suffer is the worst experience a parent could have but the experience has made the family stronger, Mrs White says.

Another blessing has been the close bonds they have formed with other families in similar predicaments.

"Those kids become friends because, a lot of the time, they can't mix with other children because of the risk of infection. And only other parents really know what you're going through because they're living it too." There was heartbreak along the way sharing with other families as they dealt with relapses, setbacks and sometimes the deaths of their children.

Right from the start, Lea and husband Terence were determined they would keep life as "normal" as possible.

Baby sister Caitlyn, now 2 1/2, helped with this. "She took a lot of the focus off the medical stuff cancer wasn't the only thing in our lives."

Last May, the family decided to move to Auckland because of uncertainty over the future of specialist child cancer services in Wellington. "We wanted to make sure that, whatever happened, we could face it together."

The Wellington unit has since been permanently downgraded to a secondary service, with support from Christchurch.

Starting at Oteha Valley School on Auckland's North Shore has been another milestone for Bianca.

The school held a ceremony and planted an evergreen magnolia last week to mark the end of Bianca's treatment.

Bianca has named it "the Bianca tree" and it is the same age as her.

"I want her to take life lessons from all this," her mother says. "One day, when she looks back and sees what she achieved, she will know nothing is impossible for her.

"We will never deny this has happened."

Read the final Growing Up With Cancer blog post at

Friday, September 18, 2009

Young cancer sufferer chases his dream of playing in black

By TANYA KATTERNS - The Dominion Post
Last updated 05:00 19/09/2009

BIGGEST FAN: Brad Burt says he had been ticking off the days till he got to meet his hero Richie McCaw.
BIGGEST FAN: Brad Burt says he had been ticking off the days till he got to meet his hero Richie McCaw.

Pure determination has helped Brad Burt battle through two major operations to remove a massive tumour from his brain stem.

And the young rugby fanatic was able to inspire All Blacks skipper Richie McCaw, as he mixed with the players during the captain's run in Wellington yesterday.

The 10-year-old, from Greytown, who refuses to let the cancer ruin his own dream of one day wearing the black jersey, shook off memories of months of treatment to tell McCaw: "Go hard, Richie, you guys can pull this off."

Over the past 10 months, Brad has endured surgery, chemotherapy and radiotherapy to rid him of the tumour. It will be December before his treatment is over and at least three years before his family know whether he has been cured.

Yesterday's meeting with "the greatest rugby team on Earth" had been a dream for some time, he said. "I've been ticking off every day in a special calendar. It has meant so much to me and it has helped me stop thinking about operations and blood transfusions and the hospital."

With the support of the Make a Wish Foundation, Brad, his older brother Josh and parents Illana and Glenn, have been given three days in Wellington, taking in the test match tonight and Brad's wish of meeting the All Blacks.

McCaw, who signed Brad's bald head, said it was a privilege to be able to put a smile on the youngster's face. "He's pretty inspirational ... a guy like that has obviously had a tough time and I guess the chance to put a smile on his face with something like this is a pretty easy thing from our point of view."

Brad, who was a standout prop in his under-11 team before he got sick, continues to have a never-say-never attitude seeking advice from McCaw as he chases his All Black dream.

"[I told him] just enjoy it, that's what sport is all about," McCaw said. "That's why I still play. I'm sure that's why he comes along and as long as he keeps smiling, that's the key."

Sunday, August 2, 2009

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By KATHERINE NEWTON - The Dominion Post
Last updated 05:00 03/08/2009

Liam Todd
CRAIG SIMCOX/The Dominion Post
TIGHT-HEAD TERRIER: Liam Todd, 8, is back in the game he loves, playing tight-head prop for his Waikanae rugby team after surgery for a facial tumour.

A year after a rare facial tumour sidelined Liam Todd, the eight-year-old is back on the rugby field with a new jaw and a new lease of life.

Last April, Liam was found to have an aggressive myoepithelioma tumour. He was the youngest of just a handful of people in the world to have the rare form of cancer.

Doctors discovered the tumour growing beneath Liam's left eye just two years after his father, Matt Todd, died of brain cancer.

Liam's mum, Rebecca, said the family braced itself for another fight, but specialists at Hutt Hospital's plastic surgery unit were able to remove the tumour and reconstruct the left side of Liam's face using bone from his leg to make a new jaw.

Now Liam has been given the all-clear, after a CT scan six weeks ago showed no sign that the cancer had returned.

With the go-ahead from his plastic surgeon, he has thrown himself back into his favourite sport, playing tight-head prop for his Waikanae under-9 team.

He said his favourite part of the game was "running with the ball" and he had even scored a try. Mrs Todd said Liam was doing really well. "He's got player of the day three times."

She had got over her initial apprehension about letting him back into the fray, she said. "I can't wrap him in cotton wool I've got to let him go."

The family could finally move on now, she said. "Hopefully this is just a little bump on the road and it's all plain sailing from here."

Friday, June 19, 2009

An autograph to crown 'em all

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By STACEY WOOD - The Dominion Post
Last updated 05:00 20/06/2009

Meads std
ROSS GIBLIN/ The Dominion Post
PEN TO PATE: Sir Colin Meads signs his name on the head of cancer patient Josh Wood, 13, right, and did the same for Josh's brother Jonathan, 10, who has alopecia.

Josh Wood lost his hair to cancer, but his smooth head made the perfect canvas for Sir Colin Meads' autograph.

Meads spent the morning before a charity auction yesterday visiting sick children at Wellington Hospital. At the youngsters' request, he scrawled his signature on the smooth heads of Josh, 13, who has leukaemia, and his brother Jonathan, 10, who is not ill but has alopecia, a condition which causes people to lose their hair.

Meads said it was the first time he had signed a scalp, but for Josh it was not a new experience.

"I went to a camp and everybody signed my head."

Josh has 18 months of treatment to go and will have to travel to Auckland for part of it.

Meads flew by helicopter to the hospital with Liam Todd, 8, who is recovering from a rare, aggressive tumour in his sinus cavity. Liam was a bundle of nerves before the flight but by the end he was grinning from ear to ear.

"He thought it was absolutely marvellous, he wanted to go again," mother Rebecca said.

Liam has a special connection to the rugby legend. "Liam's great-grandfather is Ernie Todd, who was one of my managers many years ago," Meads said.

Before going to the 12th Champions Charity luncheon, he visited a few more young patients and gave tackling tips to a pair playing an All Blacks video game.

Fellow rugby greats Andy Haden, Jamie Joseph, Ian Kirkpatrick, Grant Fox, Walter Little and Michael Jones joined him in raising money for the Child Cancer Foundation.

Among the memorabilia up for auction was a jersey signed by the three "rugby knights" Meads, Sir Wilson Whineray and Sir Brian Lochore.

Foundation fundraising manager Amanda Nicolle said the auction had raised about $60,000 by yesterday afternoon.