Seventeen-year-old Otis Hill was diagnosed with a rare cancer two years ago.
Seventeen-year-old Otis Hill was diagnosed with a rare cancer two years ago.
A Wellington teenager who has lived with a rare and terminal cancer for more than two years says it’s his love of music which has kept him fighting.
Seventeen-year-old Otis Hill was diagnosed with desmoplastic small round cell tumour (DSRCT) in 2022 after a routine GP appointment. Initially, it was thought he had lymphoma - but when the real diagnosis was revealed the family was told to go home and make him comfortable as he only had months to live. Two years on Hill has defied all odds and is still alive - although the cancer has caused rapid weight loss and a large swelling in his stomach and legs.
DSRCT is an incredibly rare, aggressive cancer. There have been fewer than 200 cases since its discovery in 1989. It causes soft tissue sarcoma tumours to grow in the abdomen and pelvis and is most common in young men between the ages of 10 and 30.
The five-year survival rate for DSRCT is just 15 per cent but because of how rare it is, the statistics are unreliable.
Before his diagnosis, Hill had dreams of becoming an audio engineer. He is a keen and talented musician and his band Bleeding Star has played gigs all across Wellington, as well as coming second in the SmokeFree Rockquest last year.
Hill told the Herald from Te Omanga Hospice that while his situation is not fair, his music has kept him going.
One of Hill’s dreams was to record an album and have it pressed on vinyl and in 2023, the dream became a reality. Using some of the money raised by a Givealittle campaign, the band’s album We Fall Together was pressed and released, with 100 vinyls and 100 CDs available.
His bandmate and close friend Jude Savage said the band had been operating in three-month chunks to see how much they could achieve while Hill was still well enough. The vinyl, created in one of these three-month periods, is a physical token of his friend’s legacy, imbued with Hill’s “musical DNA”.
Otis Hill and Jude Savage on stage playing in Bleeding Star.
Savage told the Herald that Hill’s passion for music and incredible skill as a guitarist would form part of his legacy too.
“On stage, he keeps to himself, he’s got his head down, but he’s playing every note perfectly and he nails it every time. He’s never made a mistake live, he just nails it as a guitarist and he’s an extremely talented musician.”
At the band’s last gig where Hill was able to play, he was too weak to stand - but the teenage rocker didn’t let that stop him from performing, instead playing the whole gig sitting down.
“Even when he couldn’t come to practice because he couldn’t stand or whatever was going on for him, he would not want to let me down and I think that ties in with his kindness and his strength as well,” Savage said.
Everett Parker, another of Hill’s close friends, told the Herald he believed Hill was “the greatest friend I’ll ever have”.
Otis Hill and Everett Parker.
The pair met in 2020 during their first year at Hutt Valley High School and quickly became inseparable because of their similar taste in music and sense of humour.
“I think we were both just looking for a friend to keep for a long time,” Parker said.
Soon after the pair met, Hill broke his leg and Parker took on a caretaker role to help him get around school.
There was no way of knowing then that Parker’s role as caretaker would be one he would pick up again three years later.
When Hill began to decline, Parker moved into the Hill’s home to help support his best friend through the illness that was taking over his body.
“Even if he was sleeping, I’d just be there in the corner waiting for him to wake up, and Rachel and Tyson just became like my second family. I just love them all so much,” Parker told the Herald.
Rachel Hill told the Herald she could not be prouder of her son who through all his pain has kept his impeccable manners, sense of humour and positive attitude.
“I’m always just going to say that cancer has beaten his body but not his spirit or anything else. He’s just so incredibly strong. He’s done everything. I mean, he’s done more than what some grown adults do in their whole lifetime.”
The family made the difficult decision to take Hill to hospice care last week after a cellulitis infection in his legs caused by fluid buildup from a bowel obstruction became impossible to treat at home. He is now heavily sedated, and Rachel and her husband Tyson are spending every moment they can with their son.
Despite the heavy medication he’s on and the multiple tumours pressing against his internal organs, Hill is still surpassing expectations.
“All the doctors and nurses say they’ve never seen anything like it,” Rachel said.
She told the Herald she wants Hill’s legacy to be kindness and perseverance.
“No matter how sh*t things have been for him - and this kid has been through everything - he would always get up in the morning and he would still try and make everybody happy, especially us. He’s always thinking of other people and his manners have never disappeared even when he’s in the grips of this incredible pain.”
She said Hill has taught his family a lot - even before he was diagnosed with his life-changing illness.
“I think we have been learning from Otis since the day he was born. He’s been parenting us probably more than we’ve ever parented him. He’s like an old soul.
“I know that I’m his mum and I’m being biased but he really is just the most incredible kid and I think his legacy is just kindness, perseverance. He’s just a great man.”
The Hill family: Tyson, Isa, Otis and Rachel.
Parker agreed, telling the Herald the bond between himself and Hill was closer than anything he had ever experienced.
“I think, Otis is, is probably the greatest friend I’ll ever have. I love him so much. I don’t think I’ll ever love a friend that much, and the time I’ve spent with him, every moment with them is just better and better and better and better. He’s my soul mate, he’s literally my brother.”
As for keeping Hill’s legacy alive, Parker agreed that his talent, sense of humour, strength and kindness would all be carried on by all those who knew him.
“Otis will always live on in our minds. I don’t think it will ever leave and that’s the legacy in itself.
“We’ll all just keep him in our minds until we all go.”
Vita Molyneux is a Wellington-based journalist who covers breaking news and stories from the capital. She has been a journalist since 2018 and joined the Herald in 2021.
