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'My son died when he was 8. His final words changed the course of my entire life.'

Tanya Preston was on a family holiday when she first noticed something was wrong with her son, Alex.

The usually 'cheeky' and 'energetic' six-year-old, who loved sports, was not himself as the family toured wineries in Bright, Vic, and spotted penguins on Phillip Island in May 2008. He was struggling to keep up with his sister Bella, eight, and younger brother, Jack, five.

"He'd have moments where he'd run around and kick the footie, but then he'd have to sit down and relax, which wasn't like him," Tanya, who was then 38, tells Mamamia. "He was quiet and would get cross with his brother and sister, because he had a headache."

Watch: A video of Alex's memories shared by his family. Post continues after video.


Video supplied by Tanya.

After one particular car journey, Alex began complaining of a sore stomach.

Tanya and her husband David, then 37, wondered if their son was coming down with the flu, but when they got home and Alex returned to school, things got worse.

"From then on, there was a two-week period where he'd go to school, the principal would ring me and say Alex is lying down with a sore tummy, you'll have to come and get him, and that happened a few times," Tanya says.

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"I took him to the doctors four times for different things. Over a two-week period, his time of being awake got shorter and shorter," she recalls.

"One morning he woke up, I'd driven Bella to school and come home, and he'd vomited in the bed," she recalls. "He said 'I don't feel well' and just kept on sleeping."

Tanya took Alex to the local hospital where doctors did blood tests and an MRI.

"I was watching these young radiographers doing the MRI and I could just see their faces, and I knew something wasn't right," Tanya says. "I knew." 

The scan showed a mass on Alex's brain and quickly the Royal Flying Doctor Service arrived to rush them to a larger, better-equipped hospital.

Upon arrival, a neurosurgeon came to see them. He said Alex's tumour — which was on the cerebellum, at the back of the skull — could be removed with a surgery so simple it would be as easy for the surgeon as "brushing his teeth".

Filled with confidence, Tanya focused on comforting her son. When Alex asked what was wrong with him, she decided to be completely honest. 

"I explained it like, 'there's a big pimple in the back of your head that they need to get rid of'," she says. "He trusted me 100 per cent, so when I was able to give him the information without breaking down, he goes 'ah okay, a pimple. That's okay'."

While Alex took things in his stride, Tanya said it was easier for her to deal with "literally one second at a time". 

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The operation was a success — within two days, Alex was kicking a footie around his hospital room and had zero neurological symptoms.

Six weeks of radiation and four months of chemo followed the surgery.

"Every day it was a new challenge and it was just trying to muster up every bit of strength as a parent," she says. "I just tried to make sure he was comfortable and wasn't scared."

While Tanya stayed with Alex, David, who owns and runs a Pharmacy, remained with Jack and Bella at home, trying to keep things as normal as possible for them. 

"The school were amazing... they really rallied around. They actually kept Alex's backpack on his chair at school, just so he was a part of things," she says. "They were beautiful and supportive."

After four months of treatment, Alex went home "cancer-free". He returned to school, soccer and basketball.

Alex playing golf. Image: Supplied.

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Tanya thought they were out of the woods. 

Then in July the following year they went on another holiday — this time with extended family — to Grassy Heads, NSW where they surfed by day and built bonfires by night. 

While Alex tried to throw himself into the activities, Tanya knew once again something wasn't right.

"That's when I noticed he started going to sleep early, you know sometimes by 5 o'clock. He was always tired and cold," she says. "David and I started to look at each other, worried."

Back home, Tanya took Alex for his regular checkup. While she'd known Alex was struggling, she didn't expect for a second the life-shattering news she received at that appointment.

The cancer was back.

"They said Alex had what's called 'sugaring' so it's a splattering of cancer to his brain and then tumours down his spine," she says.

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"We were in disbelief. I remember the doctor saying to us, 'we are so sorry, we got this wrong.' This oncologist no longer works with children, he chose to go and work with adults. He was just flabbergasted this protocol didn't work."

Before she even had a chance to share the news with Alex, he said: "I think my pimple's back, Mum." 

"I said, 'I think you're right, sweetheart'".

Alex's cancer was terminal. "The doctors said take him home. Just take him home and live your life. So that's what we did." 

Palliative nurses came to the house every day to tend to Alex. Tanya would bake and make them morning tea, while David took the kids to school and went to work. "We wanted to keep things as normal as possible, otherwise you go crazy."

In early October 2009, Alex managed to play his last game of indoor basketball with his friends. "Afterwards, David carried him inside and he never left his bed again," she says. "His friends came round to bring him his trophy."

After that, Alex was sleeping all the time and barely ate, only managing the occasional vanilla milkshake, which was his favourite. 

"He didn't really want to see anyone, he was in so much pain all the time," Tanya says. "In the end, he only wanted me in his room so David... I felt so sad for him. You've got to remember, David's a pharmacist, he's a scientist. And there wasn't a single medication in the world that could help his child. That was really tough for David."

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Against all odds, Alex made it to his eighth birthday.

"On that day, he said to me, 'Mum, you are such a wonderful mum, you need to have another child, you need to have three children'," Tanya shares.

"I said 'Mum's really old you know' but he simply said 'you'll find a way' before drifting off to sleep."

Tanya and David with their kids. Image: Supplied.

Tanya was 40 at the time and had already had her tubes tied. When Tanya shared what Alex had said with husband David, he said: "Well, we need to honour that."

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But for the next two weeks, their focus was on Alex, who drifted in and out of sleep until he passed away on October 30, 2009, in his own bed, in his own bedroom. "David and I were with him. I just held on to him... and that was it."

"For me, the most important thing was knowing we'd done everything we could for him and had no regrets."

Even through her grief, Tanya couldn't get Alex's final wish out of her mind.

Just two weeks after he passed away, she went to see her gynecologist. She was told that if she had her tubes untied and tried to conceive naturally, she'd have just a one per cent chance of falling pregnant.

But IVF was a viable option.

Tanya and David had to be assessed by a psychologist ahead of any treatment. "She was trying to really make sure we knew what we were doing as we'd just lost a child."

But Tanya knew for certain they were on the right path. 

"I said, this was Alex's wish and this is what we want to do."

In May 2010, Tanya fell pregnant on her first cycle of IVF. "I was taking a test every single day and on day five, it turned positive," she says. "I felt so connected to Alex in that moment."

Tanya had terrible morning sickness, spending seven weeks in bed, which those who didn't know about the pregnancy put down to grief

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Only after the three-month mark did they share their happy news with friends and family. And from there Tanya's pregnancy progressed more smoothly.

Tanya's daughter Lillian was born in February 2011, and is "the female version of Alex".

"She is such a gentle soul, she's an observer, she loves her sport," Tanya shares. 

"Lillian, even though she never met Alex, knows Alex," Tanya says. "I went to his grave every day and she would come with me. It was just a natural, normal thing. She'd grab a toy and we'd go."

When Lillian was two, the family decided to travel in France for a year. The trip had been David's idea, with Tanya reluctant at first, as it would mean she couldn't visit Alex's grave. Eventually, she agreed, wanting the experience for the kids. 

She says, despite their closeness, she and David have always been on different paths of grieving

"David was very black and white whereas I feel he's always in my heart. I still celebrate his birthday, and he's always got a present under the Christmas tree. I always put new bits of Lego under the tree, and now Lillian does that too," she says. 

Tanya and David recently completed a 1000km 'Ride for Lily' bike ride to raise money for the Children's Cancer Institute. "We did it all with Alex in mind," she says.

They were cheered on by Isabella, now 24, Jack, 20, and Lillian who is now 13 and is "the gift that keeps on giving".

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"She's brought so much joy to all our lives. Joy and purpose."

(Left) Tanya with Lillian and Isabella. (Right) David and Tanya with their family. Image: Supplied.

Feature image: Supplied.

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