June 30th, 2024 - Diagnosis Day, Nine Years Later...
Avery in mid-June 2015 at the Point Defiance Zoo for her end-of-year kindergarten field trip, just two weeks before she would be diagnosed with DIPG.
Nine years ago today, the world stopped and then the world spun.
Nine years ago today, as we sat in an ophthalmologist office in Federal Way, the word “tumor” came from the ophthalmologist, fresh off looking at the scan of Avery’s head, from an MRI he hastily called for.
The quiet, panicked, worried drive from the ophthalmologist’s office to Mary Bridge Children’s Hospital in Tacoma will remain the most worrisome drive we’ve ever experienced.
“Ok, tumors can get surgically removed. Ok, tumors can be benign. She’s going to be ok. She’s going to be ok.”
Minutes later, we were told she would not, in fact, be ok.
As we sat in a hastily arranged room at Mary Bridge, the moment that changed our lives forever left us breathless and speechless: Avery was diagnosed with DIPG.
“What is DIPG? When is surgery? What does this all mean?”
It meant a fight for her life was in the cards, even if the outcome already seemed determined.
The 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.
How did an inverted eye, something that glasses or surgery on her eye could certainly easily fix, instead become a death sentence?
Nine years later, the questions still swirl.
Avery had just finished kindergarten two weeks before (the picture above was taken at the Point Defiance Zoo just weeks before at her end of the year kindergarten trip - no warning signs at all).
She had her whole life ahead of her.
“What do you mean she has months to live? What?”
But oh did she make the most of those months.
For seven months and 16 days, Avery bravely and boldly fought this tumor before her body failed her one final time, her body no longer able to put up a fight and she succumbed 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 sideswipes us to this day, more so than February 16, is June 30.
Because that day, out of nowhere, we were ambushed. February 16, we knew what was coming, we just didn’t know the day it would come.
Mid-February, when the weather is usually miserable, it’s almost fitting.
But June 30? With the whole summer to look forward to? No, that day goes dark.
That day everything changed.
Today is a day of celebration on one hand, Avery’s big brother Cade celebrates his graduation from high school two weeks ago with a graduation party. He and Avery would have gone to school together one more year, his senior year, her freshman year.
Instead, just weeks after they wrapped up their first year of being in school together, Cade in third grade, Avery in kindergarten, would be followed by the true last year of school together, a year that Avery didn’t even get to finish.
So while we celebrate Cade, we mourn Avery, our hearts still broken, our lives still shattered by the news of 6/30/15.
She fought so fiercely, and we fight back to make her proud, to carry her legacy, to say her name.
And we fight so that no other family gets told ‘you have months, go make the most of them.’
We fight so families can hear ‘we can do something, we’re making progress.”
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.
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 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
