Grace's journey, one step at a time.
In 2023, four-year-old Grace began complaining of sore legs during her gymnastics class. Her mum, Kaye, was worried something was wrong – but other parents reassured her it was probably just growing pains.
At the time, life was busy for the young family. Kaye and her husband, Liam, were dairy farming in rural Canterbury while raising two little ones – Grace and her younger brother, Axel. Kaye had recently returned to work, and both children were in daycare part-time.
That winter, the family travelled to Ireland to visit Liam’s relatives. When they returned home, everyone came down with a virus. “But then Grace just didn’t really recover,” says Kaye. “We were getting up in the night to give her ibuprofen and Pamol, and in the mornings she’d be limping and so tired she’d fall asleep on the couch.”
Concerned, the family’s GP spoke to a paediatrician, who suspected Grace might have a type of arthritis. When X-rays came back clear, she was placed on a waiting list for a specialist appointment.
“Two months later, we finally saw the paediatrician and got follow-up blood tests – and they showed that things hadn’t improved,” says Kaye. It was at this appointment that leukaemia was first mentioned as a possibility.
“We were sent up to CHOC [Child Haematology and Oncology Centre] in Christchurch that following week, and then we had a diagnosis in a couple of days: B-cell acute lymphoblastic leukaemia.”
Although the news was devastating, Kaye says it was also a relief to finally have some answers and a treatment plan after months of uncertainty.
The family were allowed to return home for the weekend to pack their bags and prepare themselves. On Monday, Grace was admitted to the hospital and began treatment.
“They put her port in and started lots of different chemo, plus a month of high-dose steroids,” says Kaye. “The steroids made her gain a lot of weight, and she became almost unrecognisable.”
The hardest part for Grace, though, was losing her hair.
“That was really hard for her, especially as a kid who loves Frozen and Barbies with long hair,” says Kaye. “Before that, she could go out, and no one really knew anything was wrong. She wasn’t considered different – and then she was.”
Soon after they arrived at Christchurch Hospital, the family were visited by Kate from Blood Cancer NZ. She gave them a book called “Joe has Leukaemia” to help explain Grace’s illness in a way the kids could understand.
“Both Grace and Axel would actually pick it out as a bedtime story,” Kaye says. “It helped explain some of the things Grace was going through.”
Kate continued to check in on the family throughout Grace’s treatment, offering emotional support and practical help like petrol and grocery vouchers when things were tight.
“She also organised Monkey in My Chair for Grace’s class,” says Kaye. “Grace has the wee monkey here, and there’s a big one that sits in her chair at school. Kate actually went in on Grace’s birthday and brought cupcakes for her class, and Grace was pretty thrilled with that.”
“I think it was good for her classmates, as well, just to get a little bit of understanding around what’s happening with Grace.”
Grace’s initial treatment lasted nine months before she transitioned to maintenance therapy. “You expect that maintenance treatment will be a little easier,” says Kaye, “but it hasn’t really been that way for us. She’s been quite sick off and on, with hospital stays and lots of coughs and bugs. It’s been challenge after challenge.”
Grace turned five in April last year but didn’t start school until several months later, after the winter illnesses had passed. Even now, she often only manages half a day here and there.
“She loves school – playing and learning and reading and counting,” says Kaye. “It’s hard for her not to be there every day.”
Reflecting on their journey, Kaye says one of the most valuable things has been connecting with other families who understand. “You kind of end up in a club that no one wants to be in,” she says, “but it’s really helpful talking to other parents going through similar things.”
Earlier this year, Grace became a big sister to baby Millie. It’s a bright new chapter in what has been a long journey for the family. Now, as Grace nears the end of her treatment, her family are looking forward to seeing her get stronger and healthier – and to simply enjoy being a kid again.
