June 30th, 2025 - Ten Years Later - A Decade Since DIPG Diagnosis Day...
Ten years ago today, we sat huddled in a room at Mary Bridge Children’s Hospital in Tacoma.
Just an hour earlier, an MRI was read by an ophthalmologist, a concerned look on his face as the MRI, done because of Avery having an inverted eye, showed a tumor.
What kind of tumor, he wasn’t sure - but he urged us to get to Mary Bridge as soon as possible.
At a loss for words, we hastily got in our car and drove from Federal Way to Tacoma.
We sat in the hospital, waiting for answers.
A child life specialist came in and asked Avery if she wanted to go in a wagon and take a tour of the hospital, which she quickly agreed to.
Minutes later, the pediatric oncologist at Mary Bridge and a social worker, sat down and told us our beautiful, feisty, compassionate six-year old had a brain tumor.
It was inoperable. It was cancerous.
It would be fatal.
Ten years later, that day still puts a lump in our throat, weakens our legs, gets the emotions and tears flowing.
There are days it feels like a hundred years ago, there are days it feels like yesterday.
Today, it is a full decade since our lives were forever altered, and Avery’s life, the doctors would explain, would end far sooner than should have ever been allowed.
Against their best recommendation, we researched DIPG that day, looking to see what we were in for.
It was horrifying what we saw.
But we assure you, it was much, much worse.
30 rounds of radiation, multiple rounds of infusions, all to make the “quality of life” better for her in those months - there was no chance, barring a miracle, to save her life - it was merely to make things more tolerable for her.
Avery fought.
She fought the disease. She fought the frustration of losing her ability to use her left side. She fought the agitation of being wheelchair bound. She fought even having to leave class early for her appointments.
The one thing she did more than anything was fight.
Watching her fight was horrific, like why was her little body forced to fight THIS? Fight cancer?
Watching her fight was heart-wrenching - a six-year old turned seven-year old, fighting for her life against a diagnosis that left her no chance.
Watching her fight filled us with immense pride - she was a warrior, losing her ability to use her right side, she learned to write with her left hand. Losing her ability to walk without assistance, she still at various times, took a couple steps on her own.
How could it be a decade, a full ten years, since that day that will haunt us forever?
Great question. It has flown by. It has also crawled.
After her 7.5 month battle came to an end on February 16, 2016, when her body just couldn’t fight it any longer, we knew we had to fight back.
Less than three months after her last breath, we established the Avery Huffman DIPG Foundation.
We have raised over $1 million dollars for DIPG research worldwide.
On Monday, we also announced two more rounds of donations to two hospitals and labs.
Because our fight is ongoing.
When you see your child fight for their life, it leaves you zero choice but to fight for them - while they’re here, when they’re gone. And to never let them fight alone.
So we continue to fight back, ten years to the day we learned about the kind of fight she would have to put up.
And we will do it for ten more years, and ten more years after that, and ten more years after that - in other words, our fight isn’t ending.
Because Avery never stopped fighting.
Ten years of pain and heartbreak, but also ten years of gratefulness for all of our friends, family, random strangers, supporters, people who wanted to help Avery in her fight, and help the Foundation in the fight back.
We won’t ever stop fighting. Because Avery never stopped fighting.
#AveryStrong
