Taiyo's story


TaiyoIn the space of 24 hours, Cristelle and Leo's worlds collapsed.

Doctors diagnosed their two-year-old son Taiyo with Lymphoma - a form of blood cancer.

"Everything changed in that instant. Suddenly I am at the hospital hearing words like chemotherapy," mum Cristelle said. "Leo was away for work, so it was overwhelming being on my own. It didn't feel real, I thought it was a mistake."

Cristelle said she will never forget watching her son lying in a hospital bed as she tried desperately to come to terms with the diagnosis.

Taiyo with his parents

During his first month of treatment at Melbourne's Royal Children' Hospital, Taiyo became withdrawn and did not want to leave his hospital bed. Taiyo is a chatty, outgoing little boy who loves music and singing, so it was heartbreaking for his parents to see him so sad and alone.

Then came a knock on his hospital room door.

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I clearly remember the Captain Starlights coming to the room for the first time. It took some coaxing, but in the end, Taiyo was happy and laughing. They really made a big difference to our hospital experience.
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Taiyo's mum, Cristelle

During his long stay in hospital, Taiyo missed so much of his old life. He missed going to childcare, missed out on parties, family gatherings and making friends. He loves Halloween but was too unwell to go out trick or treating. Every aspect of family was impacted.  Cristelle had to stop working to care for Taiyo full-time. 

Taiyo in hospital

"Hospital days are long and monotonous. Kids go through so much when they should be out playing with friends," Cristelle says. "The Captains help them forget all that and bring them so much happiness."

For Taiyo, no hospital visit is complete without seeing Captain Starlight. When he is feeling well enough, Taiyo loves to visit the Starlight Express Room to socialise and play games. And when he is confined to his hospital bed, he rings the Starlight Express Room to request a visit from the Captains so they can bring the fun to him helping him!

Cristelle said the need for positivity is so important because kids pick up on the mood of those around them. "Leo and I said to each other, if we cry, he’ll cry. If we are negative, that is the energy he will feel. We need to be happy and make every day happy for Taiyo. That's exactly what Starlight has done for us and it works."

Knowing Taiyo is happy with Captain Starlight, also gives Cristelle moments of respite from the constant worry and a chance to 'breathe and regroup.'

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To give you an idea of what Starlight means to us, when I asked my son where he would like to go on holiday once this is all over, the cheeky monkey said hospital! That is the positive impact Captain Starlight has on him - to him, hospital is a fun place.
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Taiyo's mum, Cristelle

Taiyo with Captain Starlight

Taiyo and his family have needed that injection of positivity to help them get through their darkest times being in hospital at Christmas after a rollercoaster year since Taiyo's diagnosis. 

The family spent an agonising month in hospital last Christmas after Taiyo fell suddenly ill with liver issues. He had stopped eating and was on morphine to manage his pain. 

Thankfully, Captain Starlight was there playing games and singing with Taiyo, and making a fuss of him to bring some joy and happiness at such a special time of year. 

"Taiyo got very sick unexpectedly and we were in a state of shock," dad Leo said. "Being in hospital for Taiyo's 3rd birthday in December, Christmas, and then New Year was a very tough time. It's devastating to even think of what it would've been like without Starlight around."

Taiyo in hospital at Christmas

Taiyo is now half-way through his three-year cancer treatment plan and has monthly visits to Royal Children's Hospital for tests and check-ups. While hospital remains a constant, the family is so thankful for Starlight.

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As a parent seeing my son happy and laughing during such a traumatic time means the world to us. Starlight brings happiness in the darkest days and this impact is priceless.
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Taiyo's mum, Cristelle

Taiyo and parents

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