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We don’t know if he is truly in remission or if we have bought time

30/05/2024

Children's Cancer Foundation

Eddy is five, he is wise beyond his years, an old soul. He is shy in the company of other kids.

When Eddy mentions to his mum that he “can’t relate to the children”, and his mum tells him he is one, he questions “am I really?”

Sadly, a good part of Eddy’s childhood has been stolen.

Eddy was just 18months old when his family relocated from Melbourne to country New South Wales.

It was nearing Eddy’s second birthday when his parents noticed he had started to walk with a limp. A few short trips back and forth to the hospital followed, and finally a blood test was ordered.

It was then that the family received the phone call that changed their life forever. “Pack a bag and come straight to the hospital”, the voice on the other end of the phone said.

Eddy had Leukaemia. Fifty percent of his blood was cancerous.

His family were immediately flown to the Sydney Children’s Hospital, where they spent the next 300 nights.

The family never stepped foot in their country home again, living between Ronald McDonald House and the oncology ward in Sydney before returning to Melbourne for a further 14 months of maintenance chemotherapy.

During Eddy’s two gruelling years of treatment, he endured more than any small child ever should.

Over 150 blood tests, 16 weeks of high dose steroids, going under anaesthetic 15 times for chemotherapy via lumber punctures, 3 bone marrow extractions from his hip, 25 port accesses, 5 blood transfusions, 5 platelet transfusions and so much more.   

“The current treatments available for Leukaemia are brutal and cruel”, says Eddy’s mum Candice.

Eddy’s bones were so weak from the steroids that he fractured his femur just from walking. He had multiple seizures, one of which resulted in doctors needing to do an MRI to check if his tiny body had had a stroke.

Eddy suffered liver toxicity and learnt to walk again three times.

“Some children don’t die from the disease itself, they die from the treatment related toxicity, and too often the chemo just stops working.”

“We heard the harrowing sounds of a child dying of cancer, whilst watching our little boy rock himself to sleep.”

And whilst Eddy was one of the ‘lucky ones’ who survived, his battle continues every day.

Post treatment Eddy needs ongoing checks for any damage to his brain and heart. He has a physiotherapist, an OT, a child psychologist, an oncology naturopath, a homeopath, a chiropractor, a speech therapist, a blood nurse and oncologists.

“We don’t yet know the full extent of the damage to Eddy’s organs, we don’t know the effects on fertility, or his risk of secondary cancer. We don’t know if he is truly in remission or if we have bought time.”
“We live in hope but also an unwavering reality that we could be back in hell on earth at any moment.”

Eddy’s parents are forever grateful to the Doctors and nurses who worked tirelessly to save their little boy, but they not only ask but beg “that kinder treatments are made available”.

The Children’s Cancer Foundation stands united with families like Eddy’s, funding research to uncover new and kinder treatment options but we need your help.

Please join us in this fight to help children with cancer survive and thrive.

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