A 5-year-old Tairāwhiti boy who has been battling cancer for four years of his life has suffered a further setback.

Charlie-James Pihama, 5, has acute lymphoblastic leukaemia (ALL) – the most common type of leukaemia in children.

After treatment at Auckland’s Starship children’s hospital, he was in remission for a couple of months.

But he recently relapsed – the cancer is now in an eye and Charlie-James’ nervous system.

He and his family are preparing for a bone marrow transplant.

If that does not work, they will be travelling at a substantial cost to Australia for new treatment.

A Givealittle page – titled “A little help for our Starship Hero Charlie-James Pihama CANCER SUCKS” – has been set up.

Charlie-James is the son of Kaiti couple Rose Bennett and Wiremu Pihama. He has two sisters – older sister Patience and baby sister Kalani-Rayne, and his “Nan”, Lena Bennett, has been a prominent part of his life.

His other grandmother, Rangi Pihama, also helped the family a great deal before she died.

Charlie-James has spent a large part of his life in Auckland for chemotherapy and radiation treatment, but has been back home in Gisborne.

When the Gisborne Herald visited the family this week, Charlie-James was resting as the family wait for him to get strong enough to return to Auckland.

Charlie-James Pihama with his 5th birthday cake while at Starship.

Charlie-James was diagnosed with ALL when he was 1.

“Charlie-James was going downhill,” his grandmother Lena said. “He was not waking from sleep.”

He was taken to Gisborne Hospital, which on reflection proved a potentially life-saving decision.

“We might have lost him,” Lena said.

It was initially thought he had meningitis before it was found he had cancer.

ALL is a type of blood and bone marrow cancer.

It occurs when the bone marrow makes too many immature white blood cells, called lymphoblasts or leukaemic blasts. It can appear suddenly and progress rapidly.

Charlie-James was admitted to Gisborne Hospital’s Planet Sunshine children’s ward, and Lena said nurses there were instrumental in helping with his treatment.

A local nurse arrived to check up on him during the Herald visit.

From Gisborne, he was flown to Starship and he has been going there ever since.

“It was a very hard time. It’s still hard today,” Lena said.

Charlie-James Pihama, 5, has been battling cancer. He has been at Starship in Auckland.

His mother said Charlie-James “pretty much lives there”, with the family staying at the Ronald McDonald House in Grafton, near the hospital.

As of Wednesday, the Givealittle page had raised just over $3000.

In an update, page creator Lena said as they waited for the little boy to be able to return to Starship, he was “loving being at home with whānau”. He was “a wee bit grumpy due to his medication, but that’s expected”.

She said they were still trying to raise funds for “our little Hero” to help his parents and sisters.

“The struggle is real and hard for them.”

She thanked everyone for their support.

“Our cuddles and Love is what makes every day so special.”