For two teenagers Deni and Alex and their families, 2013 was a year they will never forget.
Deni from Dunsborough in Western Australia, was diagnosed with a brain tumour when she was 15 years old. Now 18, Deni is determined to use her story to raise awareness of the importance of research and give back to the communities that supported her.
Alex, from Sydney was 13 when given the news on Mother’s Day 2013 that he had Acute Lymphoblastic Leukaemia. Alex’s journey included sixteen months of treatment and resulted in him missing large parts of his schooling.
“You don’t believe it at first,” Alex now 17 says. “It took me a while to realise I was the kid in hospital being treated for cancer. I only realised I had cancer when I overheard my mum and a nurse speaking about the chemotherapy I was receiving.”
Then your life just changes forever. You roll with the punches but being treated for cancer becomes all that you do.”
Deni’s close knit family were devastated but determined to fight and surgery was scheduled in May 2013. After 7 hours, the surgeon was only able to remove a third of the tumour to avoid irreparable damage to Deni’s brain.
Deni recalled; “Recovery was long. I wasn’t expecting to be so badly affected by fatigue after the operation. Initially, I could maybe stay awake for a couple of minutes at a time. Over time, this got better.”
Now both are well on the road to recovery and are keen to give back and sharing their stories to support Childhood Cancer Awareness Month.
“We’re both very lucky. We’ve survived our cancer diagnosis and we’re just getting on with it, we’re not going to let our cancers define who we are or what we want to achieve in life,” said Alex.
Thankfully, Alex is now back at school, but his journey is not over. As a result of the chemotherapy he received, Alex suffered reduced blood supply to his joints, which meant he had to receive a double hip replacement.
Nothing will stop Alex, however, who is currently inspiring his peers as the face of The Kids’ Cancer Project’s Youth 4 Youth Challenge to help kids not only fighting cancer but dealing
with its long-term side effects.
“I don’t think it should just be adults who get the opportunity to raise funds and awareness. This is a disease that affects us and we can be just as powerful advocates to promote change, funding and research into childhood cancer,” said Alex.
September is Childhood Cancer Awareness Month, and thanks to research more children are surviving their diagnosis; however, over 90% of children who survive cancer will develop at least one chronic condition resulting from the cancer treatments endured.
Deni’s tumour is stable and she is determined to use her story to raise awareness about the importance of research.
Both teenagers are enjoying using their experience and first-hand knowledge to inspire others to support childhood cancer research. Deni has been working behind the scenes at The Kids’ Cancer Project helping promote Childhood Cancer Awareness Month and Alex is busily being a youth advocate for the launch of the Youth4Youth Challenge.
“We’re also thrilled to have this opportunity to thank everyone that supports research through The Kids’ Cancer Project,” said Deni.
“With community support, researchers can find better cancer treatments and help improve the quality of life for kids with cancer. Hopefully the next generation will have one hundred percent survival with minimal side effects,” concluded Alex.