Her mother Alex McCarthy said they thought Kaia needed glasses.
Elrond and Alex McCarthy, parents of Kaia and 4-year-old Amelie. Photo / Supplied
But when they took Kaia to the optometrist a week after her seventh birthday, he looked at Kaia’s eye and said: “I’ve never seen this before”.
International specialists were recruited for advice.
After extensive consultation with specialists across New Zealand, Australia, the US, and Europe, a sample was taken from Kaia’s right eye and sent to Switzerland for confirmation of the retinoblastoma.
The glowstick accident led specialists to catch the tumour early.
Otherwise, Kaia faced the possibility of losing her right eye.
Alex recalled their “complete shock”.
“It happened so quickly.”
Kaia received two kinds of treatment – intravitreal and systemic chemotherapy – over the past five months at the Starship Hospital Blood and Cancer Unit.
During Kaia’s last round of systemic chemotherapy, it was recommended she undergo intra-arterial chemotherapy.
Initially, Kaia was going to receive the treatment in Switzerland.
Alex said intra-arterial chemotherapy had only ever been administered to a few children in New Zealand, so it came with risks.
Because of uncertainties surrounding the cost, logistics, and timing, Switzerland “grew beyond what [the family] could manage in a lot of ways”.
With specialists at Starship Hospital feeling confident they could deliver the treatment in Auckland, the decision was made to call off Switzerland.
The treatment plan involved two rounds of intra-arterial chemotherapy four weeks apart.
Intra‑arterial chemotherapy is administered via the femoral artery in her groin, with the catheter guided into the ophthalmic artery so the drugs can be delivered directly to her eye.
A glowstick accident led to Kaia’s rare eye cancer diagnosis. Photo / Supplied
Alex said the first round went “really well”, and Kaia was recovering.
Her next and final round of treatment would be in early January.
Kaia will be monitored closely for two years afterwards to look for any signs of the tumour returning.
“Hopefully, this will be her last treatment.”
After two years, Kaia moves into a “lower-risk zone”.
But Alex said there was never a guarantee the tumour would not return.
“There’s no way of testing the optic nerve, so it’s difficult to know everything’s 100% gone.
“Experts are using their knowledge of what they know about cancer to give her the best treatment plan to ensure the best outcome for her.”
Kaia knows she needs medicine for her eye, but Alex and Elrond call the cancer a “cloud” in Kaia’s eye when they discuss the condition with her.
“It has been a roller coaster,” Alex said.
“You start to do one thing, and then it’s adapting and changing all the time based on the kind of information that comes in and recommendations.”
Alex and Elrond thought systemic chemotherapy would be the last round of treatment for Kaia, but “you never know what’s coming next”.
Kaia’s hair started to fall out during systemic chemotherapy, and she stopped attending school and playing sports because of her weakened immune system.
Kaia McCarthy with her sister Amelie. Photo / Supplied
“It’s been a tough road for Kaia, and she has been quite anxious.”
But Alex said, “Kaia has been amazing”, and so had the Starship team looking after her.
“They put so much work and care into her to do everything the best they can.”
Alex said Kaia was excited to get back on the monkey bars and go swimming once she recovered.
“She’s keen to get back to doing all those sorts of things.”
Their friends from Pāpāmoa Playcentre started a Givealittle page to support the family’s initial plan for Kaia to undergo treatment in Switzerland.
Since their plans changed, Alex asked Givealittle to remove the donate button and published an update alerting people they could apply for a refund.
But “a lot of people very generously said they don’t want a refund”.
Alex said the family felt so grateful to the people who ran fundraisers, prepared meals, and chipped in to help.
“A huge thank you to the community. So many people rallied around us.”
Bijou Johnson is a multimedia journalist based in the Bay of Plenty. A passionate writer and reader, she grew up in Tauranga and developed a love for journalism while exploring various disciplines at university. She holds a Bachelor of Arts in Classical Studies from Massey University.