Sebastian is a boy of steel as he fights brain cancer
Book Review
When the circumstances present themselves and a story needs to be written that explores many levels of grief and despair, an unknown author enters the stage and captures the mind of many as she articulates her devastating tragedy.
Boy of Steel was written by Mareeba-based Crystal Leonardi, the mother of Sebastian, who was only two-years-old when he was diagnosed with a brain tumour the size of an orange. It is now believed that Sebastian was likely born with the tumour, however, symptoms didn’t become obvious until the tumour had grown to a substantial size.
The symptoms began occurring at 20-months of age, and included insomnia, night sweats, excessive urination, bowed legs and pigeon toes, and left sided weakness including facial palsy.
In the book’s prologue, it says Boy of Steel was written by a mother of a two-year-old brain cancer patient. It explores the many levels of grief and despair associated with such a diagnosis, uniquely referencing journal entries written by a mother desperate to understand how such a devastating tragedy could happen to her baby boy.
This raw and honest recollection of a year many would rather forget, delicately inspires every reader to see adversity as an opportunity for growth, rather than despair, and provide families in similar situations with strength.
Crystal says the decision to self-publish her work stems from a great need to protect the authenticity of such a personal story. Self-published authors, however, are left to promote and market their work without the backing and prestige of a publishing house.
“I have worked tirelessly to promote Boy of Steel throughout 2020 but have mostly received responses declining to either stock, promote, sponsor or endorse the book, relying mostly on local retailers and stockists to sell the book.
“I have been overwhelmed with the level of enthusiasm I have received from the local Far North Queensland community, but would love assistance with getting Boy of Steel promoted on a national level.
Support
“Using the support I have received so far, I have held book signings, launches and public speaking events, as well as donating books to hospitals and a select group of charities, like Children’s Hospital Foundation, to share the book with patients/families like mine,” she says.
She says receiving Sebastian’s diagnosis and treatment in 2020, at the peak of the COVID-19 pandemic, my family and I endured many difficult obstacles, including months away from home in lockdown.
Meanwhile, his latest prognosis involves Sebastian receiving three-monthly oncology reviews at Queensland Children’s Hospital in Brisbane. His next review (in January 2022) will also include a urology review, as he reaches the two-year post-surgery milestone.
Treatment
“His MRI images in July and October have indicated a change in the remaining brain tumour so treatment will potentially re-commence in 2022. At this stage, treatment is likely to be more chemotherapy,” said Crystal.
And Crystal is also displaying her philanthropic strengths by donating $5 from every book sale in December going toward Children’s Hospital Foundation to help fund vital brain cancer research.
The Foundation funds the first Australian paediatric brain cancer research centre, Children’s Brain Cancer Centre. Brain cancer sadly kills more children in Australian than any other disease, killing an Australian child every nine days.
This Australian-first sees world-leading researchers and institutions work together to advance treatment options, improve survivorship and ultimately find a cure for this devastating disease.
Crystal also recalls the generosity and kindness that Children’s Hospital Foundation provided throughout their journey, including providing hand-knitted quilts and Pet Therapy.
You can buy the book here - which also has a list of online and local retailers you can share.
Thank you!
Newsport thanks its advertising partners for their support in the delivery of daily community news to the Douglas Shire. Public interest journalism is a fundamental part of every community.
Got a news tip? Let us know! Send your news tips or submit a letter to the editor here.
* Comments are the opinions of readers and do not represent the views of Newsport, its staff or affiliates. Reader comments on Newsport are moderated before publication to promote valuable, civil, and healthy community debate. Visit our comment guidelines if your comment has not been approved for publication.