February 16, 2024 - Eight Years Later

It has been eight years since the darkest day of our lives.

February 16th, 2016, the day our hero, our sweet little girl, Avery, took her last breath here on earth.

We get further and further away from that morning, but we never get away from mourning.

She’s been gone from us longer than she was with us.  It hardly seems fair.

The replays of that morning, still, so vivid, as if it were yesterday, still so emotionally overwhelming, it feels like it is still happening, still so painful, we wish it was a million years ago.

This week, we wrote our Avery Tuesday about Avery’s determination to walk up a hill in the snow, after she crashed on an innertube going down the hill.  Her stubbornness, her steely demeanor and will, traits that were so crucial during her fight, already on display two years before her fight against cancer began.  

Simple moments that make us smile and laugh, prior to a fight that brought pain and tears and very little laughter. 

But we dwell on the good, bright, memorable moments. 

Still, we can’t ever forget the pain and suffering she dealt with.

As horrible as that was to witness up close, even more horrible for Avery to go through it, that is what motivates us to fight back for her.

The morning she passed away, her breathing was labored early in that morning.  We went to bed every night for those last four weeks, unsure if she’d wake up.  A mere few hours before she would take that last breath, her breathing was already struggling.

As parents of a terminally ill child fighting cancer, you are caught in the middle of never ever wanting your child to leave you and never wanting them to suffer for one second longer.

You want that pain to end, that suffering to conclude, for them to be free of the cancer that destroyed their body and their life.

You want them to beat it and have a miracle keep them breathing for years to come.

What a horrible fork in the road to travel.

As Avery fought that final morning, her eye expanding to a size we’d not see, as she suffered seizures those final hours, her big brother Cade, 10-years old, refusing to leave her side, holding her hand, but the seizure so strong that her 7-year old, partially paralyzed body was able to lift his hand as he tried to help her stay comfortable, you just wanted the pain to go away once and for all.

Worship songs and other songs she would listen to daily with her grandmother Brenda before school each morning, were playing/

“Walk by Faith,” a song that Jeremy Camp wrote for his wife, who succumbed herself to cancer, playing in her final seconds.

At 11:11 a.m., the music continued to play, but Avery would never hear the song conclude.

Her final breath was taken, cancer too giant an obstacle to dodge, and the sweetest and saltiest fighter we knew, was gone.

Moving on will never happen- we have no desire to move on.  Move forward? Yes.  Move on? Never.

Moving on minimizes her life and her fight.

Moving forward emboldens HOW she fought.  That we move forward to honor her and celebrate her.

Her fight didn’t end, the time on the clock just ran out.

This year, eight years later, is a weird one - life, a life she didn’t get to fully experience, gets in the way. Big sister Alex is away at college, big brother Cade and dad are on the road for work and Cade’s baseball.  Mom is working, little sister Addison has school and activities.

So we celebrated her life as a family on February 15.

On Thursday we visited the cemetery, where Avery is laid to rest. We went to dinner as a family in Seattle, driving up to see Alex, all of us able to spend time together.

As Avery’s dad and brother boarded their flight, we were joined by one of her classmates and her mother on the flight, a classmate that we’d see every day when Avery was in kindergarten, at the bus stop across the street from our house.

Avery’s class is now in high school, freshman to be exact, though Avery didn’t get to finish 1st grade.

Life comes at most people fast, though Avery’s life ended faster.  Doesn’t make sense.

It’s hard to believe that in order to spend time with Avery, we have to drive to a cemetery to do so.

Eight years later, we know her legacy and her story are helping us fight back for her. For us. For others.

Her story continues to be shared around the country, around the world, in person, online, you name it.

Her tumor and cells from it, which we donated to research, is in hospitals around the world.  It’s in hospitals nearby.

We’ve supported numerous projects around the world that are aimed to finding a cure for the monster that is DIPG.

In the time we’ve established the Avery Huffman DIPG Foundation, over $1 million dollars has been raised in her name and honor, supporting hospitals, doctors and researchers around the world, geared specifically to find a cure for this monster.

Cancer has once again invaded our family, as Avery’s beloved Auntie Leesee, her dad’s sister, Alyse, fights stage IV cancer of the gall bladder.

As we hear the reports from our family of her own fight, it brings the pain back in full force, an uneasiness and gut-punch like we felt throughout Avery’s cancer fight.

Like her niece, Avery, we know Auntie Leesee is a fighter.

But we’re tired of this fight against cancer.

So we fight back AGAINST cancer.

Eight painful years of missing her, wishing she was here with us.

And still, eight beautiful years of her story impacting lives all over the place, her story inspiring others to join us in fighting back, to give and donate so doctors and researchers can find a cure for what took Avery’s life, but what couldn’t touch her spirit or her legacy.

So we fight. 

Just like Avery would. Just like Avery did.

Join us in that fight: https://averystrongdipg.org/donate

We miss her every single moment. 

And we are honored to call her our daughter, sister, granddaughter, niece, cousin and friend.

We call her our inspiration.

Our hero.

We will never stop fighting, Avery.

For others fighting cancer.

For you.

We love, we miss you, Aves.

#AveryStrong

Mom, Dad, Alex, Cade and Addison