When Sarah Kerby stepped up to start Bellyful Nelson in 2018, she could never have imagined that just a few years later the charity would be helping her own whānau through a gruelling journey.
Early this year Sarah’s gorgeous four-year-old son Willy had a series of weird illnesses and was then diagnosed with metastatic neuroblastoma, which she describes as pretty gnarly cancer.
“He had a 12cm tumour on his adrenal gland, which had spread widely throughout his body. We were given about a 50 percent chance of a five-year survival.”
The intense treatment Willy needs means he is spending the majority of his time in Christchurch; a one-hour flight or five-hour drive from home and his big brother.
“I usually travel to Christchurch week on, week off, and Willy’s dad goes the other week,” Sarah says. “Willy’s brother stays in Nelson with wider family. It’s incredibly tough having my boys split apart for so long. We do get times when we are able to come back to Nelson, and these times are amazing.”
It’s been tough, to put it lightly. Especially during high dose treatment rounds. And COVID restrictions have made it an even more challenging time, as support services either stopped operating or ran at a much-reduced capacity.
Bellyful Nelson has helped by providing meals, and Sarah jokes that she had ‘amazing foresight’ getting the branch running.
“It was pretty special to have those meals in the freezer though. I’m lucky in that I’m retaining some normality by going to work etc, but sometimes the fatigue and inability to function can absolutely hit you like a tonne of bricks, and you’ve still got mouths to feed. Having something in the freezer that you can just heat up and is enjoyed all round was an absolute godsend.
“It made me feel really good to know what an enormous difference our mahi really makes to people, and continues to in Nelson. One of the amazing volunteers who came on with me even made me some amazing non-regulation cookies too.”
Bellyful Christchurch and the charity’s Christchurch-based staff have also offered help there, and Sarah says she feels incredibly lucky to have that support. She’s been able to access a freezer of frozen meals the Child Cancer Foundation has there, making her realise what a lifeline the Bellyful freezer the branch set up at the Nelson Special Care Baby Unit must be too.
Willy, just about to turn five, is a legend, his mum says. But it’s hard. Of course, it’s hard. “He’s become very involved in his own care and likes to set up his own machines, give his own syringes, and take his own observations. Sometimes he gets completely fed up with it all and wishes he could go back to being a kid, with hair again.”
Willy is about halfway through treatment now after six rounds of chemo, surgery, high dose chemo, and a stem cell transplant.
“We are so happy to say that treatment seems to be working,” Sarah says.
“We’re incredibly lucky to have received so much support from the community – it’s truly humbling to see just how many people are there beside us helping us get through. I’m often coming home to a voucher for ice cream in the mailbox, or a tin of cookies on the doorstep.
“So many people have a cancer story, so I think it really resonates, and people want to help. It’s really, really, really tough though, and it seems like an impossible journey, but suddenly you’re halfway through.”
