11 November 2022
“It was the most terrifying moment; we were fighting with every single emotion, and we just looked at each other and thought, ‘this can’t be real’”.
Before even reaching her first birthday, Elowen Boston has faced a greater challenge than many of us will in our lifetime – a life-threatening blood cancer diagnosis.
In May 2020, Elowen’s parents, Will and Bronwyn noticed she was looking pale and had lingering bruises.
“After a couple of trips to our doctor, we were told to take her up to our local hospital on the Gold Coast,” remembered Will.
“After blood tests, it was confirmed that very afternoon that she had leukaemia.
“It was the most terrifying moment; we were fighting with every single emotion and we just looked at each other and thought, ‘this can’t be real’.”
Elowen celebrating her first birthday in hospital with mum and dad.
In a matter of hours, Elowen became incredibly sick and had to be given a bag of platelets and rich red blood cells.
Early the following day, the family headed straight to Brisbane to meet an oncologist. Shortly after their arrival, her diagnosis was confirmed as acute myeloid leukaemia (AML).
“Although we were still in shock, we managed to enjoy Mother’s Day together in the hospital with Elowen saying her first word; ‘mum, mum’,” said Will.
“But that night, things took a turn for the worst…she was overloaded with fluid and had stopped breathing, so they sounded a code blue.
“The doctors all rushed in and started doing CPR to resuscitate her until she finally started breathing again.
“That was the hardest start we could have ever imagined. To almost lose her like that was just horrible, and we were in intensive care for four days after that.”
Facing a long road ahead, the family moved into a Leukaemia Foundation Patient Accommodation Village so they could stay close during Elowen’s treatment.
“I had spent the first few weeks in a hotel room right next to the hospital, but when we were told about the amazing Leukaemia Foundation facilities, we were keen to shift,” said Will.
“When I got there, I just thought, ‘this is home’.”
“We had a two-bedroom, fully contained unit with a kitchen and a perfect spot outdoors where Elowen could play safely when she was out of the hospital.
“I could actually get some proper sleep, and our families were able to come and stay to care and cook for us.
“We made it our little home away from home for the next five and a half months.”
While still in intensive care, Elowen was started on the MyeChild 01 treatment protocol.
This is an international clinical trial for childhood AML, incorporating an embedded dose study of the antibody, gemtuzumab ozogamicin in combination with induction chemotherapy.
“This involves just four rounds of chemotherapy, with the last two rounds being maintenance,” explained Will.
“She had a fantastic response to treatment and achieved remission by the end of May with no detection of disease in her blood.
“She didn’t need to have a bone marrow transplant, and by September 2020, she had completely finished treatment.
Elowen with mum, Bronwyn celebrating the completion of her treatment.
“The strength and resilience of our little girl just blew us away.”
Throughout Elowen’s treatment, the family considered the Leukaemia Foundation village their sanctuary.
“You’re already so paranoid as a parent, but all that was heightened during the COVID-19 pandemic,” said Will.
“The fact that we could drive three minutes down the road, pull into the carpark and take the lift straight up to our front door gave us real peace of mind.
“The staff who clean and maintain the village have a good understanding of the risks and you know you are safe as soon as you walk through the gates.”
Leukaemia Foundation Blood Cancer Support Coordinator, Caroline was a great support to the family throughout Elowen’s treatment.
“Caroline was there throughout the entire process, and I spoke with her a lot in the first couple of months to come to terms with everything,” said Will.
“While there was no way she could answer my toughest questions like if Elowen would definitely be ok, she would reassure me that we were in the best place possible and that babies are strong.
“She was a great sounding board and was there to help me navigate through all the unknowns.
“We also had a fantastic support network at the village with the other resident families, and anyone would be there at a drop of a hat should you need it.”
For other parents, Will says to put full trust in your treatment team but also not be afraid to ask questions.
“Having both of us in the room was really important to help each other understand everything that was going on with the treatment,” he said. “We were constantly asking questions.”
“We really worked together with every single healthcare professional to ensure we could keep her on track and away from infection.”
In October 2020, the family were able to return home, and Elowen will continue to have regular blood tests and check-ups every 6 weeks.
Elowen is now back to enjoying life as a typical three-year-old.
“We’re now just getting on with life,” said Will. “I’ve returned to work as a teacher, with Bronwyn staying at home to be Elowen’s full-time carer.
“Looking at her now, you wouldn’t even know she went through the treatment.
“She’s three years old now and wilder than ever. She’s at daycare going to gymnastics and doing everything a normal three-year-old would do.”
“We have another addition to the family, August, and she’s loving her new little brother.”
Will is eternally thankful for the support they have received throughout their blood cancer journey, and highlights the importance of blood cancer research.
“We are just so grateful for the amazing care and support we received but look forward to the day when no family will have to go through what we have.
“The research is so important, especially for AML right now, and I hope together we can find a cure for this terrible disease.”
The funds raised for World’s Greatest Shave is helping the Leukaemia Foundation further Australian blood cancer research efforts, and provide better support and care for patients like Elowen who are diagnosed with a blood cancer.
By signing up for World’s Greatest Shave, you are letting young children such as Elowen know that they aren’t alone in their journey, and that there is hope for a cure.