Meet Byron. When he fell ill at 17 months old, parents Mick and Angela thought it was just a cold. Then lumps appeared on his neck, and his throat began to swell. Fearing mumps, Angela took him to hospital.
Angela and Byron stayed overnight at the local hospital after some x-rays and blood tests. Very early the next morning, a doctor woke Angela and said, "We're sending you to the Royal Children's Hospital, Brisbane. Your son has leukaemia."
“I replied, ‘No, we came in for mumps,” said Angela. “You’ve got the wrong child.”
First dose of chemo
Byron received his first dose of chemotherapy at the Royal Children's Hospital, Brisbane. Less than a day later, his body began shutting down - and doctors had no choice but to induce a medical coma.
“We stood by, feeling completely helpless,” Angela said. “We were just reeling… in the blink of an eye our world had fallen apart.”
Byron pulled through and began 12 months of intensive treatment, spending weeks at a time in hospital, with oral treatment at home in between. The impact was so profound he forgot how to walk, talk and eat.
Childhood cancer is currently treated with drugs designed for adults – because that’s all that is available right now. The long-term side effects can be devastating.
At the time, Angela was pregnant and because the chemo drugs were so toxic she wasn’t able to hold Byron or help with his care. This meant Mick had to give up his job to look after Byron full time.
After Byron's sister Makhiyah was born, things gradually improved. Byron learned how to walk, talk and eat again, and in 2011 he was declared in remission.
Angela said that while Byron had a lot to catch up on, he was making progress every day.
“He went back to school a few days a week and attended an early childhood development program. He was delayed, but he was getting there,” she said.
But in 2013, just two years after Byron was declared in remission, his throat started swelling, a symptom all too familiar to Angela. She demanded a blood test straight away and her worst fear was confirmed. Byron’s leukaemia was back.
Every year, about 150 children are diagnosed with high-risk cancer or will relapse while on standard therapy, leaving them with less than 30 per cent chance of survival.
Tailoring treatment to target these children’s individual cancers is the key to improving survival rates significantly as Professor Michelle Haber AM, a scientist at the Children’s Cancer Institute explained.
“We want to be able to offer personalised treatment to ever Australian child with high-risk or relapsed cancer by 2020,” she said.
“We have come a long way with significant improvements in overall survival rates, but there are still three children dying every week here in Australia and this is three too many,” she said.
Professor Haber is lead investigator on Zero Childhood Cancer, one of the most ambitious research initiatives ever undertaken in Australia. The world-class program brings together all major Australian clinical and research groups working in childhood cancer to offer Australia’s first ever personalised medicine program for children with high-risk or relapsed cancer.
Following the success of the program’s pilot study, the Zero Childhood Cancer Program clinical trial (which commenced in 2017) is now showing some very promising results. During the first 12 months of the trial, a personalised treatment plan was able to be recommended for almost 70 per cent of participating children, within an average turnaround time of only nine weeks from the time their tumour sample was received.
“All of our team at Children’s Cancer Institute absolutely believe that we can and we will cure every child of cancer in the foreseeable future, and we won’t stop until we do,” said Professor Haber.
Bone marrow transplant
Byron's only chance of survival was a bone marrow transplant and fortunately, an anonymous donor was found just before Christmas 2013. The family spent Christmas in hospital with a window separating them – Byron was in isolation.
“Christmas Day when your family is torn apart just doesn’t feel like Christmas,” said Angela.
“We kept a few Christmas presents for Makhiyah so she and Byron could try and open some at the same time,” she said.
Byron's transplant was a success. He is thriving making friends, enjoying school and loving karate. Now his family celebrate twice as hard at Christmas!
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