When baby Huey was only 10 weeks old, his parents found out his seemingly innocent noisy sleeping and snoring were actually the signs of something much more sinister.
In fact, doctors discovered a 5cm tumour in his neck, which was impeding his breathing, and he was diagnosed with stage 4S Neuroblastoma.
“When Huey was diagnosed with cancer, we felt completely shocked and blindsided”, Huey’s mum Jill tells Yahoo Lifestyle.
“We didn't know anyone whose child had had cancer and this made us feel very isolated and alone.”
8 rounds of chemotherapy and multiple blood transfusions
The tumour had spread to Huey’s liver, and he needed eight rounds of chemotherapy and blood transfusions.
Jill remembers how harrowing Huey’s treatments were: “The treatment process for me was exceptionally difficult. Watching your child receive drugs into their body, given by nurses who are gowned up in PPE, was one of the hardest aspects.
"It was a very physically and emotionally demanding time for me, and I lost quite a substantial amount of weight. But my sole job was to support my son through the treatment process. He did the hard yards.”
Following his treatment, an MRI scan revealed Huey still had tumour cells encasing his carotid artery - an inoperable area, meaning the cells can’t be removed.
His family and team of doctors are monitoring him monthly, and he has scans every three months to make sure the cancer doesn’t start to spread again.
“What helped me through was knowing that there are researchers dedicating their lives to researching the causes and treatment protocols of childhood cancers," Jill says.
"This has been a massive support throughout our journey.
"There are fabulous men and women working tirelessly within the Children's Cancer Institute to find a cure. It is not a matter of if. It is when."
Huey now a 'cheeky' four-year-old
Huey is described by his mum as “a cheeky 4-and-a-half-year-old who loves to joke around".
"He keeps us all on our toes and often has us all in stitches of laughter. The bond between Huey and his big brother Leo is beautiful to watch evolve. They are the best of mates one minute, then arch enemies the next," she adds.
"The boys are often rumbling, but will generally end the day with a kiss goodnight. Huey often convinces his big brother to do errands for him, and it is enjoyable to observe the way he works his big brother out.
Thanks to childhood cancer research, Huey is now back doing what he loves “visiting Bunnings, pretending to mow the lawn and using his toy whipper snipper.”
Mum’s advice to other families facing childhood brain cancer
Jill stresses how important it is for parents to also remember to look after themselves.
“My message to other families facing childhood cancer is, as a family, you are taking on a marathon," she says.
"Parents, you need to look after yourself to ensure you can look after your child. Take some time for yourself and ensure you eat well and drink lots of water.
"And, know that you are not alone. Reach out to any and all support services that are on offer. You can do this.”
The Children's Cancer Institute's annual fundraiser, CEO Dare to Cure is currently open. It brings together leading CEOs and business leaders from across Australia to face a fear by taking on a dare, and at the same time, help cure childhood cancer. Make a donation via: ceodaretocure.org.au
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