Radiation Necrosis - When You're Battling the Treatment, Not the Cancer

The Deep C

The transition from parent to oncology parent is fast, it’s sudden, and within seconds we’re thrown into a landmine of medical terminology that feels like it's exploding all around us. Words we’ve never heard, let alone can pronounce, are being referenced to our child and their survival. We’re given treatment plans and chemo protocols, radiation doses, surgical procedures, an entire book of meds from the pharmacy - every word so long, with so many syllables and acronyms, and we have to know what they all mean RIGHT NOW. Sometimes there’s a social worker or a really lovely nurse who will act as your translator, but more often than not, you are in a foreign country, you don’t speak the language, and you’re fighting for your child’s life.

And that’s exactly what happened to Audrey when her 16month old son Levi was diagnosed with an ependymoma. She was suddenly immersed in this new language - a language that is terrifying and heavy and full of questions. SO many questions. And so like all of us, Audrey looked to her doctors to translate, to explain and to educate her on all the different outcomes her son could face - Audrey deserved to know all the words, even the hardest and most painful ones a human being can hear- words like, end of life. Audrey deserved to have these words spoken to her, especially before they had already begun.

Audrey knows her story centres on a rare side effect called radiation necrosis, and she knows what happened to Levi is uncommon, but she also knows that’s why their story needs to be told.

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