‘We will not give up on saving our little girl’ with liver cancer | Manchester News

The parents of an eight-year-old girl with a rare form of liver cancer have launched a campaign to fund potentially life-saving treatment abroad.

Phoebe, from Altrincham in Greater Manchester, has already had 80% of her liver removed and her family say they have been told her only chance now is to have a transplant.

But the procedure has only been successful a few times anywhere in the world, and in the UK the three NHS centres which could potentially do it have decided it was not appropriate.

Her parents disagree, saying: “Give her that chance – however slim that chance of survival may be, she needs to be given it.”

Phoebe is a whirlwind of energy and enthusiasm, running around the garden playing football with her dad Matthew.

She shrieks with joy each time she sneaks the ball past him and boots it into the home-made goal.

“She’s just so much fun, so full of energy, absolutely hilarious,” said her mum Lindsey Billingham, reeling off the list of sports her daughter used to do.

“She did martial arts, she swam, she played rugby, she played basketball at school, she did absolutely everything. You couldn’t keep her still.”

Phoebe also has a rare liver cancer called Hepatic angiosarcoma which was diagnosed in February.

It is a particularly aggressive cancer which can only be fully treated by surgically removing the areas affected, and in Phoebe’s case every part of her remaining liver is cancerous.

“It feels surreal to me,” her dad Matthew Clarke said.

“Looking at her, her energy levels, her attitude, her determination to do everything hasn’t changed.”

But the reality is that everything has been thrown upside down.

Phoebe has had four rounds of chemotherapy to shrink her tumour.

Her family believed that the next step would be a liver transplant from a live donor. Her relatives had already agreed to be tested to see if they would be suitable.

But a few days ago they were told that none of the three NHS centres which could potentially do the operation thought it would be appropriate.

The operation is high risk and there are few recorded cases of it being successful anywhere in the world.

Even if the initial surgery goes well, the chances of the tumour quickly returning are high.

But her parents said it was Phoebe’s only chance.

“We’re just not giving up,” said Lindsey.

“There’s always got to be that first person… She’s defied all odds with everything, she’s fought so hard with everything.”

The NHS has now agreed to put the family in contact with a specialist centre in Paris for a further opinion.

They are also considering other hospitals abroad.

If one of them agrees to perform the surgery, the costs would be huge.

“We know that to do it privately in this country is north of £200,000,” said Matthew.

“We hope that Europe is similar to the UK but we don’t know yet. If we have to go to the States, that’s an eye-watering amount.”

The family said they had discussed selling their home but eventually decided to set up a fundraising page.

They said they had been “blown away” by the level of support.

In less than three weeks they have already raised £68,000.

“I’ve had messages from people abroad, random strangers we’ve never met have offered to have their liver tested for us,” Lindsey said.

“It’s been very humbling… it’s unbelievable. I can’t put into words how amazing it is.”

Work colleagues and friends at Phoebe’s school and sports clubs have also begun fundraising in the hope that a centre abroad will agree to help.

Speaking for the three NHS centres, Leeds Teaching Hospitals NHS Trust said it was “deeply sorry for the distress that this decision has caused to Phoebe’s family” and that it was “a truly awful situation for any family to be in”.

They added “that the decision not to do a liver transplant was incredibly difficult and was made following an extensive clinical review in consultation with the other specialist centres in Birmingham and London”.

The NHS trust added: “Unfortunately all organisations agreed that a liver transplant would not be an appropriate treatment for Phoebe, [which was a] decision supported by NHS Blood and Transplant”.

Phoebe’s parents said they were determined to keep going and get her the surgery.

“I think wherever there is a chance you have to pin all hopes on that chance,” said Matthew.

“You can’t not think that she will get past this, she will have a happy life.

“And I’ve got to focus on that.”