Royal battle with cancer

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League star hit by son's devastating diagnosis

CATH BENNETT - Sunday News

Last updated 05:00 17/05/2009

WARRIORS star Jesse Royal fears no one on the football field.

But the tough-as-teak prop has been left devastated after his three-year-old son was diagnosed with cancer.

Doctors broke the heartbreaking news to Jesse and wife Kylie last month and the pair have since watched helplessly as little Matarae undergoes gruelling chemotherapy.

The tot has stage three Burkitt's lymphoma a cancer of the immune system, which has led to the growth of a tumour.

"For a kid who's about to turn four, he's a pretty tough little man," Kylie wrote on a webpage devoted to her brave boy.

"At first he was scared with all the needles and tubes, but he's learning to deal with it ."

Jesse has spent the last few weeks dividing his time between his son's bedside at Auckland's Starship children's hospital and training with the Warriors, who he'll turn out for against the North Queensland Cowboys at Mt Smart Stadium today.

The former New Zealand army chef only returned to his homeland in February having moved to Oz in 2004 and three years later making his NRL first-grade debut with the Newcastle Knights.

When his contract ended, he began working in the coal mines in Newcastle and planned to join a local club until the Warriors came knocking and signed him up for two years.

But the Waikato-born league star's world fell apart on April 16 when, after a series of tests, he was told Matarae had cancer.

While their son's illness is too painful for the 28-year-old or his wife to talk about, the couple are hoping their plight will raise funds for the Child Cancer Foundation.

"I looked at my son and my heart broke," Kylie wrote. "I couldn't believe this was happening."

Matarae, who has a little brother Tumai, began his first bout of chemotherapy on April 27 and nine days later was discharged from hospital. But a viral infection saw him back at Starship eight days ago, where he has remained as he prepares for his next round of chemo next week.

Helping the family pull through have been donations and messages of support from the many people who have visited Kylie's webpage.

Warriors coach Ivan Cleary and wife Rebecca, plus legendary halfback Stacey Jones and wife Rachelle, are among those who have pledged generous amounts and left thoughtful comments.

"I am absolutely amazed at the loving support from everyone," Kylie wrote.

"Thank you so much."

`They've given me 11 months to live...But I reckon I can live for 50 more years'

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Anthony Hubbard - Sunday Star Times

Last updated 05:00 10/05/2009

With courage: David Te Maipi's new moko is about family.

DAVID TE MAIPI was 15 when a huge lump came up on his face. The doctors gave him antibiotics and told him to massage it: they thought a lymph gland was blocked. The lump, covering half his face, didn't shrink. Then they did a biopsy. When was that? he asks. September 2006, says his mother, Alma. It was cancer.

Chemo and radiation treatment didn't help, "so they just had to cut it out", says David, now 17. "It took 12 hours." He went back to school "and later I relapsed".

He had a big lump on his right leg. Then he had more chemo and radiation and they had to cut that lump out too.

"And then it came back again in February this year. And now it's back in my leg and my chest." "And your lungs," says his mother.

David says: "They've given me 11 months to live, but I think I can live that out. I reckon I can live for 50 more years," and he laughs. David laughs a lot. He's "not too bothered" about having a fatal illness. "It's just something that happened, I guess, and there's not really much I can do about it."

People in the street notice his battered face and ask what happened to him. "I say, `Cancer.' Then they say, `Oh, sorry.' And I go, `No, it's OK."' David laughs briefly. "I like it when people ask. I guess I like telling them in a way. Yes, it's not all just sitting in there, you're letting it out."

David is sitting on the edge of a seat in his bedroom at the family home in Te Marua, near Upper Hutt. The huge lump on his leg makes it too uncomfortable to sit back. Opposite is the enormous plasma TV given to him by the Make a Wish Foundation. "Me and mum have got a motto: take it one day at a time and see how that goes."

When he heard it was terminal, David made a bucket list of the things he wanted to do. He skydived out of an Air Force Hercules at Whenuapai. He is going to bungy-jump. Last week he had a moko done on his back. Each part of the design represents someone: his mum, his step-dad Mark, his grandparents, his two stepbrothers. The cancer has made him closer to Mark, a painter-decorator. It's made him appreciate things he didn't appreciate before, "like eating. I haven't eaten for 2 1/2 years". He lifts his T-shirt to show the metal plug in his stomach where the tube goes in. Cancer has made him grow up faster than he should have, he thinks.

David's always been cheerful, says his mother. "Yeah, he's always been a pain in the butt. Nothing gets him down. I mean, every day I'm down, but David's David, everybody knows what David's like. He just gets on with life." The two younger boys, Samuel, 11, and Kain, nine, resented the time she spent with David when he first got sick. "They'd say, `Oh, you're always with David, everything's for David, you've never got time for us." The family spends the weekend watching rugby and league, fighting and cheering. David has taken to football as well: he supports Arsenal, Alma Manchester United. "And who just won?" she says, triumphantly.

Alma had to give up her job as a teacher's aide to care for David. And now it's hard to find another job. This is not a wealthy family. They have to take the bus to Te Omanga Hospice down in Lower Hutt. The Child Cancer Foundation gave them petrol vouchers to pay for the trip to Auckland for treatment. Canteen has been wonderful, too, she says. David loves the hospice: the gardens "I love flowers" and the art therapy with Mary. He has made two masks. Here are my beads of courage, he says. "You get a bead for each kind of treatment. The white ones are for chemotherapy. The dark ones are for radiation. I've got one for my birthday I had two birthdays in hospital. There's a brown one for hair loss. I can't remember what the rest are for. What are the blue ones for, mum? Isolation." "He's got more than 1800," says Alma.

David is a Christian. "I believe there's something after, something waiting for us." But when he was first diagnosed, "I kind of had my doubts about him, about God. I was thinking, where are you in my time of need?" He blamed himself for getting sick. He thought it was a punishment for all the bad things he'd done in the past.

Nowadays he doesn't feel sad for himself, but "I feel like I'm the one who's hurt my family and mum. That's why I feel like I have to stay strong for them."

He goes to Upper Hutt College "because it got boring at home". It gives him a routine and it's nice hooking up with his friends. Sometimes it's easier talking to them. At home it's more serious. With his mates "it's like lay back and chill, jokes and stuff". He doesn't have a girlfriend. One of his poems says: "There's this girl in my life I've grown to love. I want it to be more but I don't think she does." No, he says, laughing, it didn't come to anything.

This week is Hospice Awareness Week. More than 13,000 people received care and support from hospice in 2008, including 4800 admissions to in-patient facilities. More than 7000 people volunteered their time to work for Hospice NZ. www.hospice.org.nz.

More cases of child cancer increase strain

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By RUTH HILL - The Dominion Post

Last updated 05:00 04/05/2009

Five more children have been diagnosed with cancer at Wellington Hospital in the past week l- eaving more families to face an uncertain future with local treatment services under threat of closure.

The capital's two child-cancer specialists husband and wife Christian Kratz and Mwe Mwe Chao are set to leave in August after less than 10 months in the job, which means new and complex patients will again have to travel to Auckland or Christchurch for treatment, splitting up their families for months at a time.

A national advisory group, which met last week to discuss whether to permanently downgrade Wellington Hospital to a secondary service, has yet to issue its recommendation. Wellington, one of only three tertiary (advanced) child-cancer services, serves the lower North Island.

Figures provided to The Dominion Post show 42 families had to travel to Auckland or Christchurch between December 2007 and October 2008 till the new specialists arrived.

Most made more than one trip. One teenager spent 11 months of one year in Auckland.

In an internal memo to staff, Capital and Coast chief executive Ken Whelan said the resignations of the two specialists "highlighted just how challenging it is to provide a comprehensive service such as paediatric oncology in a hospital the size of Wellington".

However, Wellington had more new diagnoses than Canterbury for the past two years. There are usually two or three inpatients at any one time, and about 30 outpatients each week.

Numbers of new patients at both units fluctuate between 20 and 35 each year, but most patients need treatment of two years or more and require continuing followup.

Up to five children relapse each year on average, and four or five children with terminal-stage cancer have palliative care.

Last year the Central Region Child Cancer Foundation supported 161 families through its support groups for client families and bereaved families, while its counterpart in the South Island had about 107 families under its care.

Capital and Coast's child-health manager, Kaye Hudson, acknowledged there were "many similarities between the scale of activity in Wellington and Christchurch. This is one of the questions we have brought to the attention of the paediatric oncology steering group and we await any guidance they can provide".

Canterbury has had two specialists for about 10 years, while Wellington has struggled to attract and retain clinical staff. Paediatric oncology steering group chairman Scott McFarlane, from Auckland's Starship children's hospital, has previously said Wellington's downgrade was probably inevitable and he did "not know of any informed paediatric oncologists who would now take that job".

Olivia Utting, of Newlands, whose five-year-old son Elijah has needed two long stays in Christchurch for leukaemia treatment, said she was sad Wellington's future was in the hands of people "who don't know our families, our hospital, who don't want it to work and don't think it should be here".

"Yet their decision is going to affect my son and my family."

New blow for child cancer patients

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By RUTH HILL - Wellington

Last updated 05:00 02/05/2009

Wellington's child cancer service looks set to be permanently downgraded when its two specialists leave in August again forcing families to leave town for treatment.

Parents accuse hospital management of failing to keep promises made to the two paediatric oncologists husband and wife Christian Kratz and Mwe Mwe Chao who resigned in March, less than six months after arriving from Germany.

A national advisory group, made up of clinicians and managers from the country's three child cancer centres and Health Ministry officials, met in Wellington this week to discuss the unit's future. The group is expected to recommend scrapping advanced child cancer services in the capital.

Wellington has been under threat of losing its "tertiary" service for more than a decade because of successive resignations.

Liz Hesketh, who quit in 2007, said inadequate resourcing was putting patients at risk. After her departure, patients had to be sent away for treatment for 10 months until the new specialists arrived.

Figures provided to The Dominion Post show 42 families travelled to Auckland or Christchurch between December 2007 and October 2008.

Parents say Capital and Coast District Health Board has failed to keep promises to staff, including a child cancer unit and hiring extra support staff and nurses.

Olivia Utting, whose son Elijah, 5, suffers an aggressive form of leukaemia, said the two doctors had been "treated appallingly" by Capital and Coast. They learned that plans to build a new unit in the old Grace Neill Building had been abandoned only through an email newsletter sent to all staff.

Ms Utting said she asked health board bosses at a meeting with parents this week if they were willing to "put their hands up" and commit to making the service continue. No one was.

"I told them, `I don't trust any of you, you haven't done any of the things you said you would do and I don't believe everyone here wants it to work."'

She had felt "a little bit of hope" going into the meeting. "But now I just feel deflated. Their decision is going to affect my son and my family."

Elijah faces another 17 months' treatment. He was back in the isolation room at Wellington Children's Hospital this week after his temperature rose to 38 degrees.

"Everything affects him we are back in hospital every second week. I have 100 per cent confidence in Mwe Mwe and Christian, who are amazing doctors, but I'm frightened of what will happen when they go."

Health Minister Tony Ryall said he would be guided by experts' opinion about the safest way to provide child cancer services in Wellington.

"What the children and parents need is certainty and a safe and sustainable service. I can't imagine the awful stress they have been under with all the uncertainty in the last couple of years."

Capital and Coast child health manager Kaye Hudson said she was unable to comment on the resignations for privacy reasons, but she disputed claims that the board had not acted to meet clinicians' concerns. It had recently appointed a second day-stay nurse, was "actively pursuing further improvements" to the designated child cancer area and had agreed to an extra day a week for pharmacy.

She said "the challenges we face" were not about money, but about staffing and retention.

Warning on prospects to replace oncologists

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By REBECCA PALMER - The Dominion Post

Last updated 08:52 08/04/2009

Related Links

Numbers 'too low' for child cancer unit Cancer service in doubt Child cancer doctors quit Parents dread outcome of doctors' departure

The head of a national advisory group doubts Wellington Hospital will be able to find replacement paediatric oncologists to keep its tertiary child cancer service running.

Paediatric oncology steering group chairman Scott McFarlane, of Auckland's Starship hospital, said if a candidate talked to other child cancer specialists, or researched the unit's history, they were unlikely to see it as a stable, long-term prospect.

"I don't know of any informed paediatric oncologists who would now take that job."

Wellington Hospital's two paediatric oncologists - husband and wife Christian Kratz and Mwe Mwe Chao - resigned last month, less than six months after arriving from Germany. They leave in August.

Their resignations followed the departures of previous child cancer specialists Liz Hesketh in 2007 and Anne Mitchell in 2008.

Before Drs Chao and Kratz arrived, the sickest child cancer patients had to travel to Auckland or Christchurch for tertiary (complex and intensive) treatment.

Capital and Coast District Health Board said last week that the service's "on-again, off-again" history was not sustainable and it was looking for a long- term national solution.

Dr McFarlane said Wellington's tertiary services had been under threat for more than a decade.

The steering group, which would give advice to the Health Ministry about a long-term solution for Wellington, told Capital and Coast a year ago that the unit could not sustain any further crises, he said.

The situation was not Capital and Coast's fault. Increased specialisation among doctors internationally, combined with New Zealand's low population, meant specialist services became centralised in certain areas.

Tertiary child cancer units in Dunedin and Waikato hospitals had already closed.

The end of tertiary services at Wellington was "not a done deal but there seems to be an inevitability about it", he said.

Capital and Coast chief medical officer Geoffrey Robinson said the health board was using international agencies to find applicants to replace Drs Chao and Kratz.

Resignations put service in peril

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By SUSAN PEPPERELL - Sunday Star Times

Last updated 09:14 05/04/2009

Pressure is mounting on this country's child cancer services in the wake of the shock resignation of two specialists in the capital.

Doctors at Auckland and Christchurch say they will need extra resources to cope with the increased load they face if Wellington Hospital's child cancer service closes - which seems almost inevitable when the husband and wife team of paediatric oncologists, Christian Kratz and Mwe Mwe Chao, leave in August.

The couple, recruited from Germany only last October to reopen the service after their predecessors resigned, are moving to the US.

Ken Whelan, Capital and Coast District Health Board's chief executive, said the service had a chequered history and its future was now in doubt.

It is expected the remaining two tertiary child cancer units in Auckland and Christchurch will take over care of the Wellington region patients, who require highly specialised support services. There have been eight new patients in Wellington in the past six months. Starship sees more than 100 new patients annually, while Christchurch sees about 35.

Dr Lochie Teague, clinical director of paediatric haemotology and oncology at Auckland's Starship, said the last time the Wellington unit closed it caused additional stresses for everyone. "There is not much room for extra demand."

Child oncology also required a complex network of other medical specialties and taking on extra patients was a complicated equation.

"We will continue to offer services as best we can. If a child needs to be here we will always accommodate them," he said.

Dr Michael Sullivan of Christchurch Hospital's child cancer service said he and his colleagues were disappointed that the re- establishment of the Wellington service had failed and "more disappointed that it happened so soon".

Lucy needs isolation room

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Sunday Star Times

Last updated 09:14 05/04/2009

GARY RODGERS/Sunday Star-Times

STAYING PUT: Lucy Laws and her father, Michael, at their home in Wanganui.

Four-year-old Lucy Laws' condition has worsened. The daughter of Wanganui mayor Michael Laws has now been in isolation in Wanganui Hospital for more than two weeks, battling a virus.

Lucy, who was diagnosed with leukaemia a year ago, has no immunity and specialists have recommended she be transferred to Auckland's Starship hospital. However, Laws said he had been told Starship was so full that Lucy would be placed in a general ward in Auckland City Hospital, where she would be no better off than in Wanganui.

Lucy is running fevers every six hours. Her father said yesterday she had undergone platelet transfusions and faces further transfusions if her condition does not improve. Her chemotherapy, which involved three doses daily, has stopped to let her rebuild some immunity.

Her mother, Laws' partner Leonie Brookhammer, and six- month-old brother Theo are in her hospital room with her, but other family members can only view her only through a window.

On Friday Lucy's parents were told by a specialist paediatrician that her immunity had declined further and it was now urgent she be transferred to Starship where she can undergo more tests and stay in a pressurised isolation room.

However, none was available.

Laws said Starship specialists were talking to Lucy's doctors two or three times a day, which gave them a "certain confidence".

"The irony is that 20 years ago she would have died, but these days she, and children like her, have a shot at survival that is being compromised by a lack of facilities and shortage of beds, because there is no nationwide structure on the need for isolation rooms for kids."

Laws is on leave from the mayoralty, but said he planned to return to work tomorrow.

"It is very difficult, but like all families who have kids with cancer, you find ways of coping."