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<\/p>\nIf 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\u2019 to signify the end of their cancer treatment.<\/p>\n
After more than 800 days of treatment, it\u2019s four-year-old Taiyo\u2019s turn.<\/p>\n
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\u2019s parents Cristelle and Leo thought was asthma, ended up being a diagnosis of T cell Lymphoblastic Lymphoma.<\/p>\n
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Taiyo\u2019s 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\u2019s journey even more challenging.<\/p>\n
Support on the Kookaburra ward became the highlight for Taiyo and his family.<\/p>\n
\u201cWe 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,\u201d Cristelle said.<\/p>\n
\u201cMusic therapy with Lauren and art therapy with Tilly made the biggest difference to Taiyo\u2019s experience. Jess the play therapist helped distract Taiyo during procedures. I don\u2019t think we could\u2019ve managed without her and her Mary Poppins bag of toys. Taiyo looked forward to dressing changes because he knew he\u2019d get to see Jess. She kept Taiyo calm and made the experience fun.\u201d<\/p>\n
In addition to this support, activities from the Children\u2019s Cancer Foundation, Starlight, Koala Kids and Challenge helped bring joy to Taiyo\u2019s lengthy hospital stays, which Cristelle started calling \u2018hospital holidays\u2019.<\/p>\n
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Although Taiyo\u2019s family were excited about the day they could say Taiyo was in remission, Cristelle admits she wasn\u2019t prepared for the emotional impact that Taiyo\u2019s \u2018ringing the bell\u2019 experience would have on her.<\/p>\n
\u2018We knew Taiyo was going to ring the bell, we knew what it meant, but we hadn\u2019t 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.\u201d<\/p>\n
\u201cIt didn\u2019t 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,\u201d Cristelle said.<\/p>\n
This month is Childhood Cancer Awareness Month, which aims to shine a spotlight on children with cancer, along with the people supporting them\u2014and Cristelle is thanking everyone involved in Taiyo\u2019s journey for their care and compassion.<\/p>\n
\u201cThank you for listening to me ramble on. Thank you for checking the temperature of Taiyo\u2019s dinosaurs first, then Taiyo\u2019s 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,\u201d Cristelle said.<\/p>\n
\u201cI 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 \u2018I want a hospital holiday\u2019\u201d.<\/p>\n