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Maryanne found blood in her baby daughter's nappy and knew something was very wrong

By Maddison Leach|

Blood stared back at Maryanne Laititi Tamapua from her 18-month-old daughter Fiapule's nappy. It was the first sign that something was terribly wrong.

"It wasn't bright red blood, it was a dark bloodกญ I didn't think anything of it to be honest when I first saw it," Maryanne tells 9Honey.

"I thought that she'd cut herself or maybe she'd scratched herself, so I kept checking, but it wasn't consistent. One day it would show up and then another day it wouldn't."

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Fiapule playing with her older sister in a home video from before the ordeal began.
Fiapule playing with her older sister in a home video from before the ordeal began. (Facebook)

For about two weeks, the Sydney mum kept checking her daughter's nappies for spots of blood that shouldn't be there. When they kept appearing, she headed to the GP.

Fiapule had problems with constipation before, so Maryanne assumed the blood was connected in some way, especially when her GP didn't seem too concerned.

Still, they referred Fiapule to a paediatrician and that's where the alarm bells started ringing in Maryanne's head.?

"She pretty much told us to go straight to emergency, because it's not normal for a child to be bleeding down there," she recalls.

They raced to a local hospital, where doctors ran a series of scans and blood tests before discovering something sinister; a small mass inside Fiapule's cervix.

It was a polyp of some sort and would need to be tested, but even then Maryanne didn't realise how dire the situation was.?

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A few days later, she was on the train home when she got a call. Doctors told her to get home to her husband; they needed to be together for the conversation that was coming.

"I was in tears. I remember it was a packed train and I was just quiet, tears coming down my face because your brain all of a sudden just goes to the worst place." she says.

"When I got home, I sat down with my husband and we took the phone call and they told us that it was Stage 4 Neuroblastoma."

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It's a cancer often found in children that grows in the cells of the body's nerves, and at just 20 months old it was growing in Fiapule's cervix. She was diagnosed in May 2021.

Maryanna with Fiapule in hospital during cancer treatment.
Maryanne with Fiapule in hospital during cancer treatment. (Supplied)

"It was heartbreaking. It really caught me off guard because I just kept thinking, 'it can't be anything'. We never ever thought that it was cancer," Maryanne says.

Devastated, they rushed Fiapule to hospital the following day to begin planning her treatment, which would wreak havoc on her tiny body.

High dose chemotherapy was brutal on the toddler, Maryanne often had to hold her down for scans and Fiapule had to be put under general anaesthesia for several procedures.

After five rounds of chemo, surgeons cut into the two-year-old to remove the neuroblastoma, followed by more chemo and two stem cell transplants.

Fiapule needed an NG tube for feeding during the worst of her treatment.
Fiapule needed an NG tube for feeding during the worst of her treatment. (Supplied)

Maryanne and her husband felt totally helpless as they watched their happy, healthy girl deteriorate in front of their eyes as her body fought the cancer.

Meanwhile, the treatment to save her life caused Fiapule to develop a bad case of mucositis that made it hard for her to breathe or eat.

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At some points she needed high flow oxygen to help her breathe and doctors had to insert a nasogastric tube for feeding, which her body rejected multiple times.

"It's quite traumatic. They have to hold your child down and feed something the same thickness as a phone charger all the way down the nose and down into the throat," Maryanne says.

Fiapule in hospital with her baby sister during treatment.
Fiapule in hospital with her baby sister during treatment. (Supplied)

The only bright light during Fiapule's treatment was the arrival of her baby sister, Marie, who was born at the "hardest time", while Fiapule was between stem cell transplants.

Fiapule was instantly smitten with her baby sister and loved nothing more than having her visit the hospital room when Fiapule spent every hour of the day.

"The feelings that a new baby and newborn baby bring, elation and excitement and love, it was definitely a blessing in the storm," the proud mum adds.

Their extended family also rallied around Fiapule, her parents and her two sisters, often watching Maryanne's other daughters while she was at hospital with Fiapule.

Fiapule during treatment with her family, including her elder sister and baby sister.
Fiapule during treatment with her family, including her elder sister and baby sister. (Supplied)

"We learned at the beginning we needed to reach out and lean on our family, not just for support but for prayer," she says.

"Our faith is really what kept us grounded through the whole thingกญ especially on those days where we felt like we can't do it, and as parents it can feel like a lonely journey."

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After Fiapule's second stem cell transplant, she endured five rounds of immunotherapy which finally wrapped up in November 2022. Now she's in remission and back to her old self.

Sadly, one of the long-term side-effects of her treatment is permanent hearing loss and Fiapule now has to wear hearing aids, but her parents are just grateful to have her here.

Now Fiapule is back to her happy, healthy self and in remission.
Now Fiapule is back to her happy, healthy self and in remission. (Supplied)

"We had no idea about what neuroblastoma was until it actually happened to us and I hope that doesn't happen to anyone else," Maryanne says.

"Fiapule had a lot of friends that we met during her journey who unfortunately passed away. They had the same treatment as her, their bodies just didn't handle it."

Now the family is doing their part for other sick kids by getting involved in Neuroblastoma Australia's 'Run 2 Cure' fun run on April 2 in the Domain, Sydney.

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It will be an emotional moment watching Fiapule run with her sisters and cross the finish line now she's in remission and Maryanne hopes more research can save other kids like her.

The entire family joined in the 2022 Run 2 Cure fun run.
The entire family joined in the 2022 Run 2 Cure fun run. (Supplied)

Fiapule and her family are taking part in Neuroblastoma Australia's 'Run2Cure' fun-run on April 2nd in the Domain Sydney. To register or donate, head to: www.run2cure.org.au

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