Brisbane family mourns loss of Legend Arkane Upoko, 7, following tragic brain cancer death

A Brisbane mother has shared how her son’s common cold led to the discovery of a tumour that claimed his life at the age of seven.

A Brisbane mother has shared how her son’s common cold led to a terrifying discovery that has since claimed his life.

Legend Arkane Upoko has been remembered by family for his “charismatic character” and “constant blasts of energy” following his death on June 27.

The seven-year-old tragically lost his battle to a rare brain tumour after it was discovered just under a year earlier.

Legend’s mum Nancy Fa’ase’e said they found out about the disease only last winter, after their household had been suffering from common cold and flu symptoms.

“We weren’t too concerned about Legend’s symptoms until he just didn’t get any better,” she said.

“He was actually getting worse.”

They took Legend to the Prince Charles Hospital where a CT scan revealed a tumour on the back of his brain.

After Legend was transferred to Queensland Children’s Hospital, staff informed them the tumour was cancerous.

He was diagnosed with medulloblastoma on July 5 last year.

Ms Fa’ase’e said the family was told that if Legend did not receive surgery he would die.

Legend Arkane Upoko died on June 27.

She recounted the difficult decision for Legend to undergo brain surgery.

“I still remember praying every second and every minute as it just felt like torture going through all the painful news,” Ms Fa’ase’e said.

“Legend was so innocent and had no idea what was to come.”

Ms Fa’ase’e said Legend had always been “full of beans”.

“A totally live wire, he was,” she said.

Ms Fa’ase’e said Legend had believed he had the “strength of the hulk” and had been “super competitive”.

“He made a commitment to study the art of Brazilian jiu-jitsu at five years old,” she said.

“He had such constant blasts of energy and charismatic character to him that everyone would just fall in love with him.”

But Ms Fa’ase’e said after surgery, her son would often not want anyone near him.

“Legend would yell, kick and scream for everyone to leave him alone with his dad,” she said.

“He would say ‘I only need you daddy, no one else. I only need you daddy’.”

Legend with his dad. Picture: Supplied

Legend struggled with sepsis and other bugs after multiple rounds of chemotherapy treatments, which Ms Fa’ase’e said they grew wary of as they watched Legend’s health deteriorate.

She said they were terrified to watch their son go through another cycle so soon after his recovery from sepsis.

Legend’s dad had asked for another MRI scan first, which revealed that the cancer had come back and had spread rapidly throughout Legend’s spine and brain.

“The oncologist confirmed that the hospital could not help Legend any more,” she said.

Ms Fa’ase’e said this was a crushing revelation after being told Legend was recovering well from the sepsis and bugs.

“The oncology doctors and team of nurses were constantly reassuring us that the children with this condition live long healthy lives after the three stage treatment. This was not the case (for Legend).”

His battle had taken an enormous toll on her mental health and she still needed to work to pay for bills.

“After I mustered up the courage to let everyone know (about) Legend’s diagnosis, to my greatest surprise I received an overwhelming amount of love and support,” she said.

“Suddenly everything felt manageable. I was able to find the balance between work and spending as much time with Legend as a family.”

Ms Fa’ase’e said they had tried to give Legend the very best memories with the little money they had.

Legend Arkane Upoko has been remembered for his “charismatic character” and “constant blasts of energy”.

But after Legend’s death, Ms Fa’ase’e said the family were struggling with the amounting costs for his funeral, along with debts leftover from their final adventures with him.

Family friend Laura Frassetto-Lea created a GoFundMe to raise money for the family, which has raised over $13,000.

The funds helped the family give Legend a fitting send off on Friday, July 5 – exactly one year after his diagnosis.

But Ms Frassetto-Lea said they were still left with many bills to pay.

“They won’t be back at work for a while as they grieve the loss of their beautiful boy and try pick up the pieces of life,” she said.

“Any help and support are immensely appreciated.”

Ms Fa’ase’e said she had “no words that express (her) gratitude towards all the friends and family that have donated”.

She said she would love there to be a “Legend’s Law” to give financial support to children with medulloblastoma.

Ms Fa’ase’e said the law would provide funding for children with the rare brain tumour to “live their lives to the fullest with their families and friends”.

“There was so much that we should have done whilst Legend was still alive,” she said.

She said what really made her son happy was “just being able to go and do whatever he wanted, even if it was just going for a 45 minute drive in the car everyday or twice a day.”

Ms Fa’ase’e said her son “knew he was destined for greatness”.

“And that he was,” she said.