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Home / New Zealand

Every minute counts: $20k raised for brave Hawke's Bay 11-year-old

By Sahiban Hyde
Hawkes Bay Today·
23 Sep, 2021 06:00 PM4 mins to read

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Brooklyn Ngawati, of Napier, has embryonal rhabdomyosarcoma, a rare cancer which predominantly affects children and young people. Photo / Supplied

Brooklyn Ngawati, of Napier, has embryonal rhabdomyosarcoma, a rare cancer which predominantly affects children and young people. Photo / Supplied

Every minute counts for Brooklyn Ngawati's family.

They know she has terminal cancer and they've worked hard to make sure that the 11-year-old and her younger sister Baylee understands what's coming.

Now they're focused on giving her "everything her heart desires" in the time they have left together.

To that end, a Givealittle page has been set up, and a staggering $26,488 has been donated in six days.

Brooklyn, of Napier, has embryonal rhabdomyosarcoma, a rare cancer which predominantly affects children and young people.

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"Brooklyn has shown the resilience and strength of someone far beyond her 11 years," her mother Sarah told Hawke's Bay Today proudly.

 Brooklyn Ngawati at a child cancer firefighter photoshoot a few months ago. Photo / Supplied
Brooklyn Ngawati at a child cancer firefighter photoshoot a few months ago. Photo / Supplied

Sarah said Brooklyn got the diagnosis in March 2018 when she was seven.

"Brooklyn had a solid tumour that grew in the soft tissue, muscle and jaw bone."

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Rhabdomyosarcoma (Rhabdo) only accounts for approximately four per cent of child cancers diagnosed every year and subsequently receives very little funding which might improve treatments and outcomes for tamariki who have the cancer, she said.

"After nine months of chemotherapy and 28 radiotherapy fractions, Brooklyn's tumour size significantly shrunk.

"It was unknown at the end of 2018 if the tumour was dead tissue, scar tissue or a combination of both."

Brooklyn returned to school at Taradale Primary in 2019 but in November that year a routine MRI Identified a second tumour in the same location.

The relapse chemo protocol was ineffective and her tumour grew.

In January 2020, Brooklyn underwent significant surgery to remove half of her lower jaw, part of her upper jaw, soft palette and part of the back of her tongue.

"At the same time a full reconstruction was completed by a very experienced team of surgeons," Sarah said.

"The surgery was successful but unfortunately (we) did not receive clear margins."

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Baylee keeping older sister Brooklyn entertained. Photo / Supplied
Baylee keeping older sister Brooklyn entertained. Photo / Supplied

The cancer was also reclassified as Sclerosing rhabdomyosarcoma, a cancer that is rarer than the embryonal sub-type.

"After two months in Starship with [Brooklyn's] jaw wired we were given the all-clear to begin a very intense chemotherapy regime, followed by an additional 12 months of maintenance daily chemo."

During this time the family had "an amazing family holiday" in the South Island with help from The Huljich Foundation and Child Cancer Foundation.

"Brooklyn had been off all chemotherapy for a matter of months.

"During lockdown in August we noticed that she was off her food, she had a few aches and pains and a bit of a dry cough.

"A chest X-ray and CT scan were completed and we discovered there were a number of lumps in her lungs and a large mass in her pelvis."

That same day the family had a Zoom meeting with Brooklyn's oncologist and local Hastings Shared Care team and told them the prognosis "wasn't good".

"We were lucky enough to be offered four days of radiotherapy in the hope that we can slow the spread of cancer to vital organs, reduce side effects and give us a bit of extra time.

"The time we will get is unknown. Brooklyn is very weak but thankfully her pain is now managed with some strong medication."

Sarah said Brooklyn has always played an active role in her treatment and the decisions to progress with chemo and therapy had always been hers.

"Her first thoughts are about her family.

"We have had to have the discussion about death with her and her younger sister Baylee, who is six, so they can both explore their emotions and talk about how they feel.

"Baylee has pretty much walked every step of the way with Brooklyn, being just shy of three at first diagnosis."

Sarah said the family had been blown away by the response and generosity of those who have donated.

Brooklyn's wishes are fairly small in comparison - she's crazy about electronics.

"She has spent nearly three years in isolation so she has spent a lot of time gaming. One of her wishes is to get a Playstation 5, like many kids.

"She also wants to get her animals some outfits and accessories and also buy something nice for her sister."

Any other funds will be to support the family through the difficult time.

To donate - https://givealittle.co.nz/cause/wishes-for-brooklyn

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