June 30th, 2022- Diagnosis Day, Seven Years Later

Avery on 7/4/15, just four days after her DIPG diagnosis

Avery’s favorite number was 7.

Avery went to heaven when she was 7.

And 7 years ago today was when our world was flipped upside down.

On the afternoon of June 30th, 2015, the four letters that would devastate our family and take our beautiful Avery’s life just 7 months later (see, that number 7), entered our vocabulary.

DIPG.

Seven years.  The same age Avery was when she was passed away, just a few months after she celebrated that birthday.

Seven years since Avery was essentially given a death sentence.

Seven years since we were told she’d get maybe 12 months, maybe 6 months, maybe something in between.

Seventh grade should have just been completed by Avery last week, but seven years ago, we were basically told that she would never make it to seventh grade, or second grade for that matter. Heck, she didn’t even finish first grade.

All because of the news we got seven years ago.

Seven years since we took her in for for what we thought was a harmless visit to an ophthalmologist because Avery’s eye was inverted, then to an MRI because the ophthalmologist was “concerned”- hoping for the best, not even preparing for the worst, because, no way this was really happening, right?

Seven years since the ophthalmologist said “Avery, you were so brave” after she had the MRI done, only to turn to us and say “But unfortunately, there is a tumor.”

Seven years since the ophthalmologist followed it up with “they’re expecting you at Mary Bridge Children Hospital.

Seven years since Avery sat in a hospital room at Mary Bridge Children’s Hospital, told us “how everyone is being so really nice to me,” thinking it was only her eye that was the problem, not realizing (or maybe she did?) that there was a tumor growing in her head that would bring her back to this same hospital too many times.

Seven years since that oncologist told us Avery had Diffuse Intrinsic Pontine Glioma, DIPG, and there was really, nothing, nothing that could be done.

Seven years since we sat in Mary Bridge Children Hospital, who, bless their hearts, delivered the news that said tumor that had been spotted on Avery’s brain stem was cancerous, that there was no option for surgery, there was no life-saving plan, there was, essentially, no hope.

Seven years since it was recommended that we make a lifetime of memories (and we might want to hurry on that because there wasn’t a lot of time).

Seven years since our hearts were ripped apart, gutted and destroyed.  

Seven years since our heads spun, our hearts sunk, our stomachs ached.

Each year, on June 30th, and only on June 30th, will I go back and read the very first Caring Bridge entry I made (https://www.caringbridge.org/visit/averyhuffman/journal/view/id/5594afb8a589b41969f8406d).  

There is not a day that goes by that we don’t look at a picture of Avery, spend time thinking about her, miss her so much it hurts, wish everything would have been different.

So much more different.

Seven years later, everything in our world is different. Nothing makes sense.

Seven years ago, everything changed, and while we’d love to say we’ve become better people as a result, all I can say with certainty, we’ve become different.

But seven years after a diagnosis would lead to 7.5 months of bravery, fight, love and compassion, we can still say, we’ve never been more motivated or inspired by one person like we were by our sweet, precious, Avery Hayden Huffman.

She is why we fight.  Every single day.

And why we will ALWAYS fight.  Every single day.

Because she was the picture of brAvery.

She was the face of fight.

She is our hero, our inspiration and our motivation.

And we will never, ever, stop telling her story, carrying on her legacy or being inspired by her fight.

The Avery Huffman DIPG Foundation will fight until there is a cure. Until no family has to ever hear “we’re sorry, but there is nothing we can do.”

Because there is so much we can still do.  For her, for every family.  Fight with us. 

Fight for Avery. https://averystrongdipg.org/donate

We miss her so much, we love her so much and she is in our hearts forever.

#AveryStrong

#Forever7

Brandon, Amanda, Alexandra, Cade and Addison.