June 30th, 2023 - Diagnosis Day, Eight Years Later...
It has been exactly eight years since the day our family, and especially Avery, had our lives change forever.
Eight years ago today, we sat in a hastily arranged room at Tacoma’s Mary Bridge Children’s Hospital, and were given the four letters that became the most horrendous moments of our lives to that point.
A diagnosis that changed everything for our family, but no one more drastically than Avery, who was in the room just moments before, only to have a child life specialist ask Avery if she wanted to go in a wagon and take a tour of the hospital.
Still not entirely sure what was wrong with our precocious 6-year old, only that she had an inverted eye that was so troubling, an ophthalmologist ordered an MRI scan, it never crossed our minds that they were taking her out of the room to deliver a death sentence.
Reeling from the even more concerned look from the ophthalmologist after the MRI was read and he suggested we rush to Mary Bridge and that Avery, who had finished kindergarten mere weeks before, had a tumor, our minds were reeling and spinning and flying at a million miles.
With Avery out of the room, an oncologist and social worker gave us the news that no parent ever wants to hear: their child had an inoperable tumor, an incurable form of cancer and there was nothing to do but to make a ‘lifetime of memories,’ and the clock was ticking.
DIPG.
For seven months and 16 days, Avery bravely and boldly fought this tumor before her body failed her one final team, no longer able to put up a fight and succumbing to brain cancer on February 16, 2016.
From October 19th, 2008 until she took her last breath on February 16, 2016, Avery was here with us for 2,677 days.
But the day that will rock us more than any day, to this very day, is June 30th, 2015.
The day everything changed.
Avery has now been gone longer than she was here with us. Every new day makes her one day further from being with us.
Instead of being a 14-year old, finishing middle school and looking forward to starting high school, Avery never even completed first grade before he body betrayed her once and for all.
Instead of being here to play and fight and argue and spend time with her brother and sisters, we’re unable to see her, only share our memories and our photos and our love for her.
And we’re also able to fight just like she did.
She fought in a way no child should ever have to, yet she did it.
We fight like no parent should have to and certainly never want to, because she did it.
The foundation bearing her name has raised over $1 million dollars for research and studies and for hospitals and doctors, committed to finding a cure for DIPG, so that another family, that, God-forbid, ever hears the diagnosis we did, will instead have reason for hope and optimism.
Parents are supposed to be great examples to their children.
But we could have never had a better example of how to live life, to love life, to love others, to stand up for what we believe in and to fight even when people say the fight is pointless, than our little girl, Avery Hayden Huffman.
And because of her fight and her life and our love for her, we fight for her and will never spend a day not thinking of her, not saying her name and not sharing her story.
She deserves it.
She didn’t deserve cancer, she didn’t deserve to die so young.
But she deserves our commitment to fighting back for her.
So we do. And we will.
For her. For others.
Fight back with us: Join the Fight- Donate to the Avery Huffman DIPG Foundation
#AveryStrong
