For most families Christmas is about giving and receiving, about celebrating milestones, opening gifts, enjoying carefree holidays and relaxing with relatives and friends. For mum Emma Freney, it’s both simpler and more complicated than that.
Back in 2015, Emma and Pete Freney were devastated when new-born Baxter was diagnosed with cancer. Their journey has been a difficult one, and will remain so in the future. However, many rays of light have burst through the darkness. One, Emma says, is her son’s incredible determination to live.
Baxter was diagnosed with acute myeloid leukaemia when he was an infant.
Today he's a fun-loving four-year-old.
“He has already faced the types of challenges that many don’t face in an entire lifetime,” she says. “But still he continues to fight and surprise all of the medical professionals.”
Then there’s the fact that there is now a new member of the family. Baxter is proving to be a wonderful big brother to little Dallas who arrived in June 2018.
“It has taken Baxter a while to understand that his brother is actually sticking around, and that his world has to be shared,” Emma smiles.
“But actually, he is like any other big brother. He is very loving. I honestly couldn’t be more proud of how well he has understood and adjusted to the change.”
Baxter keeps a watchful eye on his baby brother Dallas.
Dallas’s health and happiness is a blessing, Emma says. But with Baxter’s many medical and care requirements, the busy mum is usually run off her feet looking after both her boys.
“Baxter has so many needs that have to be met daily, it obviously comes with its challenges,” she says. “I have to be there to help him through all of the challenges and frustrations he faces daily. But I would take this challenge on a thousand times over if it means Baxter is alive, and happy.”
The hard road
Baxter began showing signs of health issues when he was just two weeks old. After feeding he experienced obvious discomfort and his belly was consistently swollen. Following numerous visits to doctors and an overnight stay in hospital, Baxter was diagnosed with acute myeloid leukaemia at five weeks old.
So began 12 months of treatment that saved his life but which, Emma says, caused enormous distress and ongoing health and developmental issues.
“He received an aggressive chemotherapy protocol from August 2015 to February 2016,” she says. “This involved four rounds of back-to-back chemo, which left him grasping onto life after every round.”
“The side effects were terrible, and were heartbreaking to watch. They included mucositis, vomiting, burnt skin, infections, impacted respiratory function, heart failure, high and low blood pressure issues and more. For the majority of his treatment he was nil-by-mouth. It is such a terrible thing to comprehend.”
Then there are the long-term effects. The most significant being caused by neural pathway damage.
Baxter plays a game with his dad.
“Baxter is delayed developmentally for his age and has a severe speech delay,” says Emma. “This has had a big impact on Baxter’s life. It’s only in the last year that his receptive and expressive language has begun to develop.”
Receptive language is how we receive and interpret language and messages while expressive is being able to talk. Baxter can talk, Emma says, but his speech is limited.
“In the last 12 months, his speech has improved dramatically. However, he still can’t connect all the language, thoughts, emotions he is feeling and convey them into words to tell me what he wants or how he is feeling. I have to continually watch his body language, or talk for him based on his non-verbal cues.”
“When I get something wrong, Baxter becomes utterly frustrated, sometimes he just gives up as it’s just too hard trying to convey it, so he just sits on the floor and cries,” says Emma.
Just as distressing are the signs of post-traumatic stress that Baxter demonstrates.
While the opinions of most of the medical professionals in the hospital was that Baxter would be too young to remember the trauma of the treatments, he now shows a high degree of anxiety around even the simplest of medical events – checking his temperature, applying a Band-Aid, etc.
The elimination of all these devastating physical and psychological side effects is The Kids’ Cancer Project’s raison d'être. The charity has a vision that every child will not only survive a cancer diagnosis but will do so with treatments that have minimal harmful effects.
At Christmas, Emma says, she simply feels grateful. She’s grateful that her family is together and that Baxter, who is now four-and-a-half years old, is alive.
She’s grateful that he is almost four years in remission from cancer, that his little brother Dallas hasn’t had to go through the terrifying treatments that Baxter suffered, and that for one day at least, the family doesn’t have to make another trip to another medical specialist.
Emma and Baxter read a story.
“The next year will be another year full of therapy, trying to give Baxter the best opportunity to succeed at the second life he has been given,” Emma says.
“Right now we see his oncologist every four months and cardiologist every six months. But he also has to see his speech therapist, occupational therapist and music therapist every week.”
“We have to do specified activities at home with him every day, and ensure he listens to one hour of therapeutic music through headphones every day. We also spend time practising basic sign language with him every day,” says Emma.
Time for school
Emma is beginning to integrate Baxter into a social setting to prepare him for the next stage of life - he’ll be starting primary school in 2021. However, having spent much of his life in hospital and in isolation, the idea of Baxter being a room filled with children is exciting, but daunting.
His immune system is also compromised because of a lack of exposure to particular germs and bacteria throughout his years in medical care. Earlier this year, Emma tried introducing young Baxter into a childcare setting in preparation for school, but he picked up every bug going around so progress will continue slowly down that path.
In the meantime, Emma is simply looking forward to a joyful Christmas full of life and love.
And Dallas makes four!
“We always just celebrate Christmas with our family,” she says. “The happiness Christmas brings to children is just so beautiful. It’s as if nothing else matters. I find it such a beautiful time to reflect and be grateful that we are here, together, healthy and alive. Nothing shines brighter than a grateful heart.”
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