If you hear the sound of bells on the second floor of the RCH, it may be one of our oncology patients in Kookaburra, ringing the ‘celebration bell’ to signify the end of their cancer treatment.
After more than 800 days of treatment, it’s four-year-old Taiyo’s turn.
Taiyo has been receiving chemotherapy for a tumour that covered a third of his chest and caused just under a litre of fluid to enter his left lung. One weekend in April 2019, Taiyo was short of breath and gasping for air. What Taiyo’s parents Cristelle and Leo thought was asthma, ended up being a diagnosis of T cell Lymphoblastic Lymphoma.
Taiyo’s treatment was a roller coaster and included 28-day cycles of chemotherapy, steroids, blood infusions and more. In between, multiple visits to the Emergency Department and a diagnosis of pancreatitis made Taiyo’s journey even more challenging.
Support on the Kookaburra ward became the highlight for Taiyo and his family.
“We were surrounded by an amazing team of people. The nurses from the ward were absolutely fantastic. The love, care and attention were phenomenal. The Day Oncology team made us feel like superstars from the moment we checked in to the moment we finished treatment. We are very lucky our experience has been so positive,” Cristelle said.
“Music therapy with Lauren and art therapy with Tilly made the biggest difference to Taiyo’s experience. Jess the play therapist helped distract Taiyo during procedures. I don’t think we could’ve managed without her and her Mary Poppins bag of toys. Taiyo looked forward to dressing changes because he knew he’d get to see Jess. She kept Taiyo calm and made the experience fun.”
In addition to this support, activities from the Children’s Cancer Foundation, Starlight, Koala Kids and Challenge helped bring joy to Taiyo’s lengthy hospital stays, which Cristelle started calling ‘hospital holidays’.
Although Taiyo’s family were excited about the day they could say Taiyo was in remission, Cristelle admits she wasn’t prepared for the emotional impact that Taiyo’s ‘ringing the bell’ experience would have on her.
‘We knew Taiyo was going to ring the bell, we knew what it meant, but we hadn’t prepared for the emotional, mental and physical effect it was going to have on us. We had family from all over the world in a Zoom meeting watching and we live-streamed it for our friends.”
“It didn’t hit us until about five minutes beforehand once the nurses lined up in the hallway. We were exhausted by the end of it, like the last two plus years had just hit us,” Cristelle said.
This month is Childhood Cancer Awareness Month, which aims to shine a spotlight on children with cancer, along with the people supporting them—and Cristelle is thanking everyone involved in Taiyo’s journey for their care and compassion.
“Thank you for listening to me ramble on. Thank you for checking the temperature of Taiyo’s dinosaurs first, then Taiyo’s second. Thank you for making me laugh. Thank you for making Taiyo laugh. Thank you for getting me a coffee. Thank you for making our experience the most positive it could be. Thank you for going out of your way. Thank you for helping us get through it all,” Cristelle said.
“I have said it before and I will say it again, Taiyo had such a positive experience that when I asked him where he would like to go for a holiday after treatment he said ‘I want a hospital holiday’”.
To learn more about Childhood Cancer Awareness Month, visit the Cancer Council website.