Baxter’s story: The continuing journey

Baxter’s story: The continuing journey

After beating leukaemia as a baby, Baxter and his family are still navigating the ongoing effects of his gruelling cancer treatment as he prepares for a new challenge.

A difficult start

Starting school is a momentous occasion for all kids. But after being on “the edge of death” as a newborn, going to school is an even bigger milestone for five-year-old Baxter.

In 2015, Emma and Pete Freney’s joy at their son Baxter’s arrival quickly turned to heartache when the two-week old baby started to show signs of serious health issues. Their world was turned upside down when they discovered Baxter’s discomfort whilst feeding and distended belly were signalling a big problem. At just five weeks old, baby Baxter was diagnosed with acute myeloid leukaemia (AML).

He immediately began a gruelling 12 months of treatment, including four rounds of back-to-back chemotherapy and spending his first Christmas in hospital. Mum Emma describes the toll it took on the family.

“The side effects were terrible, and were heartbreaking to watch.” Emma says. His Mum was left questioning “why does he have to go to the edge of death for treatments to work?”

Baxter’s body was shutting down, at one point he even suffered heart failure. But against all the odds he grasped to life and is now in remission. 

Emma says he is “still going strong in remission. His heart has recovered from the heart failure at the end of his treatment.”

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A friend to help

Baxter’s side effects did not disappear once chemo stopped. He suffered neural pathway damage from his cancer treatment which means Baxter is delayed developmentally for his age and has a severe speech delay.

He receives regular specialist therapy to help with his development, particularly to assist with learning to interpret language messages and how to express himself through speech. Emma says that this leaves him in “a world that at times makes no sense to him” and she’s often looking for non-verbal cues to work out how he’s feeling.

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Baxter now has a best friend to help him along his continuing journey; his little brother Dallas. Although it took him a while for him to get used to Dallas being a permanent fixture, Baxter has well and truly settled into his role as big brother. 

“They have a beautiful little bond. Both teaching each other life lessons as they grow. Dallas is so adaptable to all of Baxter’s extra needs, therapies and even has learnt some basic signs we use with Baxter. Nothing warms my heart more than seeing the two of them play.”

The next big step

Starting school is Baxter’s first time in an educational social setting and, after going through cancer and chemotherapy, it comes with additional worry.

“His immune system is obviously still a little compromised so he is prone to more colds and sickness…School will obviously be a big challenge on us all as his body is introduced to new germs.

Emma says that Baxter is slowly transitioning to school to ensure he can continue to attend oncology and cardiology reviews.

“It’s making sure we are not missing any residing side effects from the chemotherapy now. There can be late onset issues from his treatment, other cancers, organ issues, eyesight, hearing etc.”

Proud

Emma gushes over how proud she is of her son.

“There is no one thing that I am most proud of when it comes to Baxter…Between his cancer diagnosis, fighting to stay alive and then adapting to his autism spectrum disorder diagnosis, I am so overly proud of the way he tries so hard each and every day.”

There are lots of other people in Baxter’s life who are proud of him, including family friend Kristy Sultana.

Kristy, who knows Baxter’s Father Peter, was looking for a charity to fundraise for and reached out to her friends for ideas. The Freney family were quick to jump in with a suggestion that was close to their hearts.

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Read more: Personalised disease monitoring in childhood AML.


Knowing that their son will suffer ongoing developmental delays, they are passionate supporters of The Kids’ Cancer Project. They share the organisation’s focus on using scientific research to eliminate the devastating physical and psychological effects of current cancer treatments.

“The Kids’ Cancer Project means more than an organisation with cancer in its name to me. They are working to change the pattern, the outcomes, the heartache, the devastation, through science,” Emma says.

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Kristy, who is the trainer for greyhound Flying Ricciardo, loved the idea of supporting a charity so close to the Freney’s hearts. She has produced t-shirts that read ‘Team Ricciardo proudly supporting The Kids’ Cancer Project’. A portion of sales will go towards helping researchers look for kinder, more effective cancer treatments for kids like Baxter. 

 

“Knowing our story, Kristy decided on The Kids’ Cancer Project, which we are so grateful for.”

The road ahead

Baxter is now settling into his new routine and Emma hopes that fundraising efforts will mean treatment options for kids with cancer will improve.

“When you have a child with cancer you think of all of the things you want to change and make better. The only thing that would make going through cancer a different experience is for the treatments to be kinder and for them to have a better success rate.”

She believes the work of The Kids’ Cancer Project is helping to move towards that goal.

“To know an organisation is wholeheartedly working towards funding clinical trials and kinder cancer treatments gives me hope that maybe the future will look brighter for our kids.”

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