Wellington teen with rare cancer and family determined to find cure

Otis Hill and his sister Isa. Photo / Supplied

The family of a Wellington teenager diagnosed with a rare form of cancer says they will go "to the ends of the earth" to find a cure if that's what it takes.

Fifteen-year-old Otis Hill is a musician who dreams of being an audio-engineer.

In February he was diagnosed with desmoplastic small round cell tumour (DSRCT).

DSRCT is an incredibly rare, aggressive cancer. There have been fewer than 200 cases since its discovery in 1989.

The prognosis is tough, but Otis's mum Rachel Rasch-Hill says her son is tougher.

"His line is that he can't be bothered dying, he doesn't have the time for it."

The rare diagnosis came as a complete shock to the family, who had been told it was most likely to be lymphoma.

Rasch-Hill says it floored them, and the defeatist attitude of the Christchurch specialist they had been sent to was shocking, too.

The Rasch-Hill family. Photo / Supplied

"It was just like what the hell, a complete kick in the guts... the doctor said there was basically no point in a second opinion, we can make him comfortable here in Christchurch and he can do some bungee jumps."

For Otis and his family, that was not an option. The family returned to Wellington, to "their village" of family and friends and organised a game plan.

First: chemotherapy to shrink the tumours.

If his tumours have shrunk, surgery to remove them will be considered. But if New Zealand surgeons won't do it, the whole family is heading to the US, where a surgeon has had positive results with an intensive surgery.

"The end game is we want surgery and if we don't get it here, we will go overseas. There is a specialist surgeon in the US and what she does is she'll open up chest cavity, remove the tumours and pour hot radiation through it."

It sounds like a lot – but if that's what it takes to save Otis, that's what they'll do.

"We're going to leave no stone unturned. We'll go to the ends of the earth – we'll go to Mexico and walk over a mountain with a shaman if that's what it takes. Until Otis says he's done with it, we will do anything we can."

The ends of the earth don't come cheap, however. Rasch-Hill says an estimate of cost puts it at about $800,000.

A Givealittle page set up by a family friend has already raised $72,682 and Rasch-Hill has several more fundraising options in mind such as gala dinners and raffles.

Otis's 8-year-old sister Isa has plans of her own to raise money.

"I'm going to set up a lemonade stand!" she told the Herald.

Rasch-Hill says the support has been "amazing".

"We've got a huge family and we're very close, and we have lots of friends, so I'm not surprised by that bit – but complete strangers giving it, it's incredible.

"We are just so, so grateful from the bottom of our hearts for what everyone is doing."