Earlier this year, former The Block NZ favourite Rachel Rasch-Hill sat in a dark radiography room while her son Otis lay in front of a screen, which showed a large mass in the teenager’s abdomen. Texting her husband Tyson Hill, Rachel said she was worried. Something wasn’t right. Less than two weeks later, Rachel’s fears were confirmed when doctors diagnosed their 15-year-old with a rare form of cancer. Devastatingly, the Wellington family was also told it was incurable.
“In the beginning, I couldn’t sleep or eat for a month and thought I’d never be happy again,” says Rachel, 45, who appeared in the first season of The Block NZ in 2012 with her hubby, 46.
“I wouldn’t make eye contact with Tyson because every time I looked at him, I could see how heartbroken he was. But you kind of just get on with it and it becomes your new normal. Somehow, it has brought us all closer.”
Otis has the enduring love of his parents and sister Isa.
For music lover Otis, who plays lead guitar in the band Bleeding Star, a lump was found in his abdomen after his mother took him to the GP in February. While Rachel initially believed he wanted a day off school, thinking she’d call his bluff with a trip to the doctor, it turned out to be far more sinister.
“Otis had lost weight, but I put it down to his teenage puppy fat disappearing, and he had pains, which I thought were from growing,” says Rachel, also mum to daughter Isa, nine. “He’s been going through a bit of a health journey because he suffers anxiety and obsessive-compulsive disorder. When the doctor found the lump, he said it was probably nothing and to keep an eye on it, but Otis couldn’t get it out of his head.”
Three days later, following another trip to the doctor, Otis was referred for a scan. As soon as he and Rachel stepped in the front door of their home after the appointment, her phone rang. It was the GP, who said the results had come back and were serious.
“He said we needed to head straight to Wellington Hospital and it was all a blur,” recalls Rachel. “In the car, Otis and I both started crying. Earlier, I’d figured it might be an obstructed bowel, but I think we both expected it must be cancerous by then. It was straight into blood tests and CT scans, and the whole time I was thinking, my poor son.”
The family was told there was a 99% chance Otis had lymphoma cancer and the following day, they had an hour to pack for a flight to Christchurch Hospital. Self-employed real estate agent Rachel phoned Tyson, who works for Hire a Hubby, and asked him to pack her things and meet them.
“There was no way I could’ve gone down there without Tyson and there’s no way he wouldn’t have wanted to be there,” tells Rachel, whose daughter stayed in Wellington with her grandparents. “Funny thing is, I ended up going to Christchurch with the sneakers I had on and a pair of jandals. But Tyson packed their guitars!”
Music is getting Otis through the dark times.
Initially, the trio were scared but hopeful when doctors said Otis’ cancer was treatable. However, a week later, Rachel’s world shattered when it was discovered he didn’t have lymphoma. Instead, her “gentle” and “wickedly funny” boy was diagnosed with a rare type of cancer that has only 240 reported cases worldwide. Referred to as desmoplastic small round cell tumours, Otis’ cancer had spread to his pelvis, collarbone, liver and peritoneum.
“We were told it’s incurable and Otis was brave and asked the doctor how long he’s got. He was told three months and I refused to believe it,” insists Rachel, who immediately began researching treatment options, since chemotherapy alone won’t kill the cancer. “The five-year survival rate is 15 percent. As a real estate agent, I work in percentages and 15 percent is high!”
Four surgeons refused to operate on Otis, offering to make him comfortable instead, so Rachel moved her son back to Wellington Hospital, where he was transferred to adult services.
“We have an amazing oncologist who is quite willing to support what we want to do, and that’s a surgery called HIPEC. It involves opening up the chest cavity and abdomen, then pouring high doses of warm chemotherapy into the abdomen area,” Rachel explains. “We’ve heard from a surgeon willing to do Otis’ surgery in Sydney. The cost will be AUD $283,000 and that’s for his hospital stay of 35 days – 10 of which would be in ICU.”
On top of those costs, Otis’ parents will need to pay for their flights and accommodation. With Rachel not working to be by Otis’ side in the day, and Tyson down to part-time hours and staying with him at night, the financial stress is high.
A Givealittle page set up by a friend has so far raised over $87,000 to help with everyday expenses and the cost of Otis’ surgery, which he and his family hope will mean a longer life.
“When you hear the word incurable and are basically given a death sentence, you’ll do anything,” Rachel admits. “We’re hoping someone in New Zealand can offer the HIPEC surgery, but so far, we’ve not had any luck.”
Otis’ surgeons have said he’ll need another three months of chemo before he can have the rare procedure, since he still has tumours outside his abdomen that need to disappear.
He’s currently doing five days of chemo at a time and recently completed his 11th round. During the 16 hours he’s hooked to a machine, Otis does what any typical teenage boy might. He goes on his phone, talks to friends, watches videos and plays guitar with his former musician dad.
“Otis only picked up the guitar three years ago when his father smashed his Xbox because he was becoming a nightmare on Fortnite! He’s self-taught, and can listen to any song and play it within a few hours. He’s quite brilliant,” Rachel smiles. “He’s painfully shy when you first meet him, before he’ll open up. He’s intelligent and a real deep thinker, and he’s close with his sister despite the age gap.”
Isa is jokingly referred to as a Block Baby since Rachel became pregnant with her while filming the reno show. Having suffered many miscarriages after welcoming Otis, the couple decided to give up on trying for another child and instead do something crazy, like television.
“Then I got pregnant in the first week we were there. I wondered why I felt sick,” Rachel laughs. “Admittedly, though, with Otis having cancer, I do feel guilty about leaving him to go on the show. He was five and we were away for three months. But we were able to buy a house after and if we hadn’t done The Block NZ, Otis wouldn’t have a sibling!”
A five-year-old Otis with Tyson and Rachel shortly after his sister’s arrival in 2012.
Otis is looking forward to celebrating his 16th birthday on September 11. Between hospital stints and liaising with doctors and specialists about potential future surgeries, Rachel’s planning a party with Otis’ friends and family.
“I don’t know how I do it, but it has been six months since his diagnosis and I’m really grateful he’s still here,” she says. “As parents, you try everything. You never give up.”
To make a donation for Otis and his family, visit givealittle.co.nz/cause/otiss-fight-with-cancer.
