Children's Cancer Foundation
In June 2016 a large mass was discovered on the brain of thirteen year old Dylan. He was rushed to the Emergency Department for urgent surgery.
Dylan’s mum, Michelle, remembers the day of Dylan’s diagnosis as if it were yesterday.
“Dylan had been sick and lethargic for a while” recalls Michelle. “After multiple tests, he had an MRI which revealed a large mass on his brain. The surgeon was called in and immediately my boy was prepared for life-saving surgery”.
After the surgeons removed as much of the tumour as possible, Dylan began intensive treatment for Medulloblastoma, including six weeks of brain and spine radiation, four months of chemotherapy, 28 transfusions, lumbar punctures and MRIs.
Dylan’s Beaded Journey, funded by the Foundation, attests to each procedure – even for a shy thirteen year old the beads proved to be a powerful and empowering tool.
Dylan’s mum is relieved that he has finished treatment now, other than three monthly checks. “I can tell he is getting better as that old sibling rivalry with his brother Joshua comes back once in a while. We still have a long journey ahead as Dylan has a peg for nutritional support, he vomits every day and can’t return to school yet. As things start to settle, what we have been through is really hitting home.”
Throughout treatment, Dylan relied on his older brother Joshua for emotional and social support. “They are closer now,” says mum, Michelle. “Everything gets put on hold during treatment; relationships and general routines change, it was great that they had each other. Throughout this past year Joshua witnessed the relentless journey that children with cancer travel. He has also seen the support that families receive from organisations like the Children’s Cancer Foundation. Merridy Justice (Family Resource Coordinator, funded by the Foundation since 2006) and Mary McGowan (Foundation director) were incredible. We couldn’t have done it without them.”
Joshua was profoundly impacted by seeing his brother go through cancer treatment, so he decided to cut his 30 cm long hair as a fundraiser for the Foundation and donate his hair for a wig.
“Dylan never complained, no matter how sick he was. I am glad that I could do something to help by cutting my hair, it made me feel like I could make a difference”Joshua recalls
For families starting on their own cancer journey, Michelle has some simple advice: “You are not alone. As isolating as this kind of journey is there are amazing organisations like the Children’s Cancer Foundation and equally amazing humans with you. Reach out and take the help that is available.”
Michelle and her family are now looking forward to less time in hospital.
“Dylan has finished treatment now, other than three monthly checks. I can tell he is getting better as that old sibling rivalry comes back once in a while,” said Michelle. “As things start to settle, what we have been through is really hitting home.”
Thank you to the Negri family for sharing their story with the Children’s Cancer Foundation.
The Children’s Cancer Foundation needs your support to continue funding programs such as The Beaded Journey. Donate today.