Turning 10 is a big day for any kid - reaching double digits is super exciting! For Zai it was a milestone celebration that meant the world.
Zai is an outgoing inquisitive child who loves figuring out how things work. He’s a ‘wise old soul’ who loves learning new things – from the foods in Japan to the different cultures and currencies around the world. “Zai is such a curious kid and is always asking questions. He’ll probably be a scientist one day,” his mum Kalee says.
Zai was fit and active, always running around and kicking a ball. He rarely got sick so when his appetite started to drop and he had bad tummy pains, his mum and dad became concerned.
GPs initially diagnosed Zai, then aged seven, with constipation and he was given stomach medication. When his condition got worse and the pain increased one weekend, Kalee took her son to emergency.
Blood tests and X-rays failed to show anything, so they were sent home with a referral for an ultrasound.
Kalee took Zai for the ultrasound that Tuesday. By the end of the day their world was shattered.
“Less than an hour after the ultrasound, they called and told us to go straight to the hospital,” Kalee said. “Zai was admitted to Paediatric Emergency and then the doctors delivered the devastating words you never want to hear: “Your child has cancer.””
Zai was immediately transferred to the Oncology ward where he would remain for the next two months.
The scans and ultrasounds initially pointed to Zai having Lymphoma, but further tests revealed Neuroblastoma - a rare and very complex childhood cancer.
Zai had a large benign mass in his chest which was removed during a gruelling an eight-hour surgery.
Biopsies on Zai’s stomach showed Stage 4 High Risk Neuroblastoma and tragically the cancer had spread throughout his entire body.
The shock diagnosis left the family of five devastated.
“It was extremely hard on everyone,” Kalee said. “I’m a very hands-on mum, always there for pick-ups and drop-offs and suddenly I’m living at the hospital full-time.”
The family run their own dental practice, and Kalee’s husband had to keep that going while looking after their two other children Portia, six and Cyrus, eight. The children’s grandparents flew in from interstate to help out and the family did everything they could to try and keep things as normal as possible amid so much stress and fear.
After removing the tumour in his chest, Zai needed to recover before commencing the next 15 months of treatment including a second eight-hour surgery.
His mum describes Zai’s treatment as one of the most gruelling a child can endure.
Zai had eight rounds of high dose chemotherapy, a stem cell/bone marrow transplant using his own stem cells, 12 rounds of radiation and six months of immunotherapy.
“The treatment was intense and rolled on back-to-back. The side effects took their toll and left him feeling sick and exhausted. While he missed his friends and being able to be a kid, Zai was so strong and never once felt sorry for himself.”
Kalee said that Starlight made an incredible difference during those long months in hospital.
“As soon as Zai woke up in the morning, he asked for Captain Starlight. They always put a smile on his face. The Captains light up the children’s days and make the parents laugh even on the hardest of days. Little moments of happiness bring so much joy, lift the mood and take away the pain of difficult treatments.”
Joining in the fun and games from his hospital bed helped Zai cope with the pain and isolation of his treatment - the quiz on Starlight TV was a highlight of every day.
When he was well enough, Zai would go to the Starlight Express Room as often as he could. His mum joked Zai had so much fun there, he would tire the Captains out!
“The Starlight Express Room helps children feel like they’re not on their own – that there are other kids just like them going through similar things. It helps normalise hospital through social connections,” she said.
The Starlight Express Room also helped Zai’s family stay connected. Portia and Cyrus always wanted to go there to play whenever they visited their brother in hospital.
“We were able to be together as a family and create happy memories whilst we were in hospital,” Kalee says.
When Zai was well enough to be at home, he still needed to isolate him from his brother and sister due to his comprised immune system.
To the family’s immense relief, at the end of Zai’s 15 months of treatment, he was cancer free.
“He responded well to the treatment, but the hard truth is that neuroblastoma has a 50% relapse rate and if he was to relapse, the survival rate is low,” Kalee explained.
Zai is now on a maintenance drug newly available in Australia. He has to take six tablets per day for two years and has three-monthly scans to monitor his progress. And the first thing Zai wants to do every time he’s back in hospital, is to go to the Starlight Express Room and see everyone again.
His mum says after so much time in hospital, Zai now says he wants to be an anaesthetist!
Zai is keeping healthy and active and has built up enough strength to play soccer. He’s loving being with his friends again and feeling like a regular kid.
The family is so thankful that Starlight was there for them during the toughest times helping to ‘lighten the burden’.
Kalee said, “Without the spark of fun that Starlight brings, hospital would have felt empty and lonely with nothing to look forward to. Playing and having fun is so good for children’s mental state and it has a hugely positive impact on the treatment process. You hear about Starlight, but when you see it in real life, it is amazing.”
