Baxter’s story: The continuing journey

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.

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.

With support from Dallas and the rest of his family, Baxter shows enormous resilience through everything life continues to throw at him. Most recently, this includes a diagnosis of autism spectrum disorder.

“He never gives up,” Emma says, praising her determined son. “Even in a world that he struggles to fit into…he always tries.”

To find out more about Baxter’s story, watch our video from 2016 here.

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.”

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.

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.”