Girls' eggs taken as safeguard

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By RUTH HILL and ANNA CHALMERS - The Dominion Post | Friday, 25 July 2008

Some parents of child cancer sufferers are having their little girls' eggs frozen to give them the chance of having their own babies one day.

However, doctors say the procedure is still experimental and there are ethical issues to resolve before it becomes standard practice.

Bioethics expert Gareth Jones, a spokesman for the Advisory Committee on Assisted Reproductive Technology, which this week recommended allowing frozen eggs to be used in fertility treatment, said there was nothing in law to stop parents pursuing this option.

Ethics committees faced growing pressure from parents wanting their daughters' eggs or ovarian tissue removed before cancer treatment, he said.

"However, any application would still have to be considered by an ethics committee - with young children, there is the issue of informed consent, among other things."

Child cancer specialist Scott MacFarlane said he knew of two families who had gone to Australia to have the procedure in order to "circumvent the torturous ethics committee process" in New Zealand.

Another pre-pubescent girl had surgery in Christchurch to harvest ovarian tissue after clearance by the local ethics committee.

Dr MacFarlane said he welcomed open debate on the issue, which raised several clinical and ethical considerations.

"Our primary goal is to save the life of the child and we don't want to do anything that would jeopardise their chance of survival.

"Any delay to initiating cancer therapy in order to carry out what is still an experimental procedure that may ultimately prove a fruitless exercise has to be considered very carefully." His advice to parents was to "watch this space".

"There's a long way to go before I would advocate a wholesale programme of pre-pubescent children having this procedure before cancer treatment."

Wellington fertility specialist Andrew Murray said he had previously frozen eggs for women as young as 16 facing cancer treatment - but he would have qualms about taking tissue from pre-pubescent girls.

"As far as I am aware, there are no ethical guidelines for doing that to children and I wouldn't feel comfortable."

Lea White, whose five-year-old daughter, Bianca, was found to have leukaemia just over a year ago, said she had worried whether treatment would rob her of the chance of having children.

However, Mrs White said even if the family had been offered the chance to freeze some ovarian tissue, she was not sure they would have subjected Bianca to another invasive procedure after chemotherapy.

Hanover funds freeze crushes a sick boy's dream

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'It's my son's trust fund'

By KERRY WILLIAMSON - The Dominion Post | Friday, 25 July 2008

JOHN SELKIRK/Dominion Post

BROKEN PROMISE: Benjamin Pak was dying of leukaemia when mum Jacqui told him she would take him to Australia if he could pull through. But Hanover Finance's move to freeze investor's money crushed that dream.

Benjamin Pak was dying of leukaemia when his mum told him she would take him on a trip to the Gold Coast - if he could just pull through.

He beat the odds and is in remission, and next year Jacqui Clark was going to keep her promise to her 13-year-old son.

But that dream has been shattered by Hanover Finance's move to freeze investors' money, including Benjamin's $9000 trust fund.

"I promised him when he was sick in hospital - he was dying at that point, he hadn't eaten in three weeks - that if he could just get himself better and eat, I would take him on that trip," Ms Clark said.

"We were going to go next year. He was really excited. I really don't hold any faith in getting that money back now. It's sad."

Ms Clark, of west Auckland, is one of 14,500 people who invested more than $500 million in the company run by entrepreneurs Eric Watson and Mark Hotchin.

It is the third-largest privately owned finance firm in New Zealand - and the latest casualty of the finance-company-sector meltdown.

Yesterday the Commerce Commission said it had begun an investigation into the company.

Investors face a nervous three-week wait to see how much money they will get back.

Benjamin - after 3½ years of chemotherapy - has been in remission for the past four years.

Ms Clark first invested her son's trust fund with the company about five years ago. She re-invested it for another 30 days just last week, assured by a staff member that her son's money would be safe.

"It is not my money, it is my son's. We are mortgaged up to the eyeballs and this was going to give him that little bit of happiness," she said yesterday.

"This is what we've been focusing on, a promise I made years ago. And it looks like it's gone."

Hanover's troubles are a double blow to Ms Clark's family. Her 75-year-old mother invested close to $38,000, almost all her life savings. She is in hospital recovering from hip surgery.

"Poor old Mum, she is going to get out of hospital to think she's just got nothing."

Ms Clark has tried to explain the situation to her son, naturally disappointed his dream trip to the Gold Coast is in limbo.

"The sad thing is, Benjamin has said to me all these years, 'I'd love to have this, I'd love to have that'. I always said, 'You can't, this money is for later on'. It's a risk, but I thought it was a careful risk."

Family quit Wellington for Bianca's cancer care

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RUTH HILL - The Dominion Post Tuesday, 13 May 2008

ANDREW GORRIE/Dominion Post

ON THE MOVE: Bianca White with parents Lea and Terence and younger sister Caitlyn. `We would rather stay in Wellington . . . but personally I don't feel it's that safe at the moment,' Mrs White says.

Faced with the prospect of another five months without a paediatric oncologist in Wellington, Bianca White's parents are moving to Auckland to be nearer specialist services.

Bianca, 4, was diagnosed with acute lymphoblastic leukaemia last June, two weeks before her birthday.

The timing could not have been worse: in July, Wellington Hospital was forced to downgrade its child cancer service after the departure of a paediatric oncologist.

The remaining specialist left in January.

Two permanent specialists from Germany are due to start work in October, but meanwhile children needing intensive treatment must go to Auckland or Christchurch.

Bianca's mother, Lea White, said though the nursing and medical staff at Ward 18 had bent over backwards to do their best for families in trying circumstances, the situation had been worrying.

An offer by her husband's employer to transfer him to Auckland "came at the right time".

"The staff here are wonderful, and the support from the Child Cancer Foundation has been a life-line ... If her case was a bit more straightforward, maybe we could wait till October ... but with everything she's been through we would rather she was under an oncologist on site."

Bianca is at present on a maintenance regime, rather than intensive chemotherapy, but she has suffered numerous complications and cannot mix with other child cancer patients because of a case of suspected shingles.

Mrs White said it was hard leaving Wellington, where the family had lived for three years.

"We would rather stay in Wellington ... but personally I don't feel it's that safe at the moment ...

"We always said we would do whatever it takes to get her through. It is disruptive but we are lucky we have this opportunity."

A Unit Struggling

The number of "reportable events" involving child cancer patients at Wellington Hospital more than doubled in the first half of last year as the unit struggled with a rash of resignations.

Figures issued by Capital and Coast District Health Board record 36 such events - which included administrative delays, staff issues, staffing levels and medication errors or "near misses" - between April and June. In the first three months of the year, there were 14.

None had resulted in serious harm to patients, said the board's clinical director of child health services, Graeme Lear.

Though there were very few child cancer patients, each child required dozens (in some cases hundreds) of procedures, interventions and interactions in the course of their treatment.

"We strongly encourage our staff to report any events or near misses, as this enables us to improve quality standards and adjust our processes to reduce the likelihood of recurrence."

Fighting against a repeat of history

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KENT BLECHYNDEN/Dominion Post

GETTING SUPPORT: Seven-year-old Liam Todd will have facial surgery for an aggressive malignant tumour next week, his father lost his battle with brain cancer two years ago.

Two years after a father lost his battle with brain cancer, his seven-year-old son is fighting a malignant tumour in his sinus cavity.

Matt Todd, 34, died in May 2006. Last month, Matt's son Liam was found to have an aggressive malignant tumour and once again the local community is rallying to support the family.

Liam's mother, Rebecca Todd, was just starting to come to terms with her husband's death when she received the shattering news. Doctors told her the two diagnoses were unrelated.

"The rug was pulled from under me. I expected the worst because I am used to hearing the worst, but when they delivered the diagnosis I was numb," she said.

The Kapiti Coast family - Mrs Todd also has a five-year-old daughter, Ashleigh - have returned from a 10-day stay at Ronald McDonald House in Christchurch, where Liam underwent procedures at Christchurch Hospital because there are no paediatric oncologists at Wellington Hospital.

The best thing about returning home for Liam was "being back in my bed".

Preliminary results show the tumour to be a type very rare in adults and even more rare in children. It does not respond to chemotherapy so will have to be removed.

Liam will undergo facial surgery at Hutt Hospital next week.

His biggest concern is having plasters removed after the surgery. "They really sting."

The outgoing schoolboy said it was "great" being back at school with his friends for a few days.

His biggest disappointment was not being able to play rugby, but the highlight of the past gruelling weeks had been a gift from the Crusaders - a jersey emblazoned with "Liam, all the best with your fight", signed by his heroes Richie McCaw, Leon MacDonald, Stephen Brett, coach Robbie Deans and other team members.

The annual Bowman-Todd memorial rugby match this weekend will now raise funds for Ronald McDonald House as well as Mary Potter Hospice.

The match is named for Mr Todd and his friend Dave Bowman, a 36-year-old former policeman who successfully campaigned for government funding for the chemotherapy drug Temodal before dying just five weeks after Mr Todd.

The police invitational team v Waikanae invitational team game kicks off at 1.15pm at Waikanae Park on Saturday.

Anyone wanting to support the event can contact Ty Davidson at Kapiti police station.

Wellington cancer specialist 'too dear' to keep

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By REBECCA PALMER - The Dominion Post | Monday, 21 April 2008

The locum hired by Wellington Hospital to fill in when its last child cancer specialist left is now also departing.

Paediatrician Lewis Ingram's contract has ended and he will return to Britain. He began working for Capital and Coast District Health Board in January, to fill a gap left by departing paediatric oncologist Anne Mitchell.

He was appointed with the possibility of staying an extra three months and is registered to work here till the end of July.

Two new child cancer specialists are due to begin in October.

The board says it will use another hospital paediatrician to fill the gap left by Dr Ingram till then.

A worried parent who contacted The Dominion Post said he had told her it was too expensive for the board to keep paying his accommodation costs and wages.

"He said, `It's not that I want to go, it's just the fact they have decided it's too expensive'.

"He was here short-term, we realise that. But I thought he was here for six months."

Another mother said she, too, had understood he would be here for a further three months.

"It's like we're back to square one again."

Capital and Coast clinical director of child health Graeme Lear said the board had considered extending Dr Ingram's contract but decided to cover his position by using an existing Wellington Hospital paediatrician. He had helped the hospital get through a transition period.

Though employing Dr Ingram had been "very pricey" - the board paid for him to stay in an apartment and provided a vehicle - funding was not behind the decision.

Dr Lear said parents of child cancer patients would notice little difference. Neither Dr Ingram nor the paediatrician who would step into his role were paediatric oncologists, though they had an interest in oncology. He understood parents felt anxious.

Wellington's child cancer service had been a secondary service rather than a tertiary (advanced) one while Dr Ingram had worked there. It would continue to be so till paediatric oncologists Christian Kratz and Mwe Mwe Chao arrived from Germany in October. Complicated procedures and treatments would continue to be provided at Christchurch or Auckland hospitals till then.

No more tough trips for Bianca

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TOM FITZSIMONS - The Dominion Post | Thursday, 03 April 2008

KENT BLECHYNDEN/The Dominion Post

CHEERY AND CHEEKY: Leukaemia sufferer Bianca White, 4, enjoys a fresh-air break outside the Grace Neill block.

While Bianca White laughed and tasted fresh air for the first time in days, her father gave thanks that the "axe blow" to Wellington Hospital's child cancer unit had been staved off.

"We're happy," Terence White said yesterday outside the hospital where four-year-old Bianca is in an isolation unit.

"We do think Wellington should have an oncology service. It's the capital city of New Zealand - and we'd really like to have some certainty."

Bianca was diagnosed with acute lymphoblastic leukaemia last June, beginning a course of treatment more than two years long. Though the most intensive chemotherapy had finished - and her hair was starting to grow back - Bianca was put back into isolation earlier this week because of a recurring case of shingles.

Hospital staff let her have 10 minutes outside in a Wellington southerly yesterday afternoon. But despite not being able to push the button in the lift or shake hands, Bianca was full of cheek - joking with her dad as she rode aloft on his shoulders.

"She's been as cheery as we have been," Mr White said. "At the end of the day, it's something that has happened. It doesn't do a lot of good being sad about it."

Going to Christchurch for treatment before Christmas had been tough, and further trips or a permanent move would have been jarring for the family, he said. Temporary doctors at Wellington were helpful, but there were no options if they were sick or Bianca had problems after-hours.

The shortage had been "pretty much like an axe blow" and other families had suffered more than them, shuttling back and forth to other hospitals.

Cancer unit saved

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Two new child specialists hired; old block to be kept as children's hospital

REBECCA PALMER - The Dominion Post | Thursday, 03 April 2008

Children with cancer will get treatment closer to home after Wellington Hospital hired two specialists from Germany to boost its ailing service.

Wellington's sick children are also set to get a new hospital after Capital and Coast District Health Board decided to keep a building previously scheduled to face the wrecking ball.

The board plans to move children's services to the larger Grace Neill building once the new hospital building in Newtown opens.

The board announced yesterday it had recruited two paediatric oncologists - Christian Kratz and Mwe Mwe Chao - from Germany. The pair are expected to start work in October.

Twenty-one children have been sent to Auckland or Christchurch for tertiary (complex) cancer treatment since the sudden resignation of one of Wellington's cancer doctors last July. Its remaining specialist finished in January.

In a bid to save the service, Capital and Coast signed a memorandum of understanding with Canterbury DHB in December to provide a joint service. That memorandum still stands.

Clinical director of child health Graeme Lear said it had been a difficult time.

"We acknowledge and regret the difficulties experienced by patients, their families and staff over the past few months, but we plan to bring this service back up to a full tertiary paediatric oncology service as soon as possible."

The board would continue working with other district health boards till the new doctors arrived. Dr Lear said the pair's skills would benefit the entire country.

Health Minister David Cunliffe said he was delighted with the appointments, which came after he made it clear to the board "something had to be done and done quickly".

Chief operating officer Martin Hefford told a board meeting yesterday that one of the doctors would work part-time at Wellington's medical school. The board would continue looking for a third oncologist.

Ronald McDonald House Wellington chief executive Lesley Slieker had met the doctors when they visited the house a few weeks ago and she said they would be a fantastic asset to the city.

"We're really delighted for the families who have been pushed to the limit over the last few months."

Child Cancer Foundation spokesman John Robson said the need to travel to Auckland or Christchurch had placed added pressure on families and stretched the foundation's resources.

The 11-storey Grace Neill block, planned for the children's hospital, currently contains women's health, maternity services and wards - services that will be moved to the new hospital when it is completed at the end of this year.

Original hospital redevelopment plans did not include the building but interim chief executive Derek Milne said keeping it would give a bigger space for the children's hospital.

A connecting tunnel would be built between the new building and the Grace Neill block.

The existing children's hospital would be converted to offices.

The plan will use $10 million the board has remaining in its redevelopment budget on refurbishments.