Masterton newborn diagnosed with rare cancer 'every parent's worst nightmare'

Kaihautu was born with aggressive soft tissue cancer. Photo / Givealittle

A Masterton family is fighting for the life of their baby son Kaihautu Maurirere Smith, who was born with an aggressive and rare cancer on November 2 last year.

He is now being treated at the High Dependency Unit at Christchurch Hospital, where he and his mother Gemma Smith have been based for the past two months.

Parents Gemma and Mia Smith had not experienced any problems during what was by all accounts a normal pregnancy. They already had a healthy 3-year-old son, Mahaki.

"We had the standard ultrasounds, and everything was perfect," Gemma said.

Shortly after he was born, the midwife noticed a lump on Kaihautu's right side. Initially not thought problematic, he was discharged next day.

After specialist advice and a second opinion in early December, a biopsy was done on the lump, and on Christmas Eve the results indicated it was an aggressive soft-tissue cancer.

Three days later, the whole family flew to Christchurch so Kaihautu could start treatment at the Children's Haematology Oncology Centre.

"It's every parent's worst nightmare. It brings me to my knees, but I have to stay strong for us all," Gemma said.

"I am screaming and broken inside, but I don't show it on the outside.

"It's like an unreal journey."

Kaihautu Maurirere Smith wearing a necklace signifying milestones on his cancer treatment journey. Photo / Supplied

In early January, Kaihautu's lump was diagnosed as a rare extrarenal malignant rhabdoid tumour [MRT].

MRT is a highly aggressive cancer with a poor prognosis and a high chance of recurrence. It can affect the kidney, liver, peripheral nerves and other soft tissue.

The then 2-month-old had a five-hour operation to remove the tumour in January.

Follow-up treatment includes nine rounds of chemotherapy, of which four are complete. The treatment is taking its toll.

"He's gone through the chemo cycles quite well up until now when he's just crashed," Gemma said.

"He had unplanned surgery on Thursday to help drain fluid. For the past five days, he's needed blood transfusions.

"I don't know how I get through every day, but I do. I don't have a choice."

Gemma said the family remained optimistic as medical advice said Kaihautu was holding his own.

"He bounces back. He's so strong," she said.

"We believe he'll get through these hard times."

Gemma and Kaihautu will be based in Christchurch Hospital throughout the treatment.

Mia and Mahaki intend to travel to Christchurch from Masterton to support them and spend family time together.

She cannot speak highly enough of the team at the hospital and Ronald McDonald house.

"They are amazing. It's a world you know exists, but you don't really know it until you're in it. I don't ever leave him. I don't ever go outside."

Gemma spoke about the impact on the family.

"Our family's life will never return to normal because of the fear of the cancer returning.

"The whole family is affected. Mahaki can't go to kohanga because of the risk of getting ill.

"I will not be able to go back to work," she said.

Kaihautu's response to the treatment will not be known for a little while, but the family are hopeful.

A Givealittle page was set up by Gemma's long-standing school friend Kylie Worsop.

"Words cannot express what an amazing strong woman and mother Gemma is," Worsop said on the page.

Funds raised will help with extra expenses including unfunded family travel, extra treatment, and day-to-day living.

The best-case scenario has the family home together in Masterton in late-June or July.

Kaihautu has inspired Hauora Tairawhiti district nurses to take part in this year's Cancer Society Relay for Life.