Our sweet Avery,

Today is your day.  Your big 12th birthday, the last year before you would officially be a teen!  You should be planning a fun celebration with your pals and closest friends.  It might look different than in years past because of the quarantine we are under, but make no mistake, we would be celebrating and doing something spectacular in honor of you!  You would request sparkles and bling and no doubt pizza and a movie too.  You would request us all to sing a million times and you would insist that presents should be opened first thing this morning.  You would require this day to be all about you!

And so, even in your earthly absence today, as we miss you terribly and continue to do our best to honor you each day, today we will do our best to celebrate YOU.  The you in the very beginning when we held you in our arms after much anticipation and wait, to the you as a rascal toddler keeping us on our toes and testing us in all ways, to the you who loved to be silly and sassy, to the you who faced brain cancer and didn’t give up, to the you who endured endless suffering and never gave up hope, to you who taught us all while never knowing it, to the you we imagine you to be today on your 12th birthday.  You.  Your life will always have purpose and meaning, and we will celebrate who you were and who you are forever.   

But, all the while, we do have Avery shaped holes in our hearts, a void that only you can fill.

We get through our days knowing you have everything you need now and are comforted knowing heaven has made you whole.  There is no more suffering for you now, a promise we are so grateful for!

Your foundation continues to do all it can in your honor too.  We are pushing ahead for a cure in collaboration with doctors, researchers, other families and all who love you.  We welcome the chance to say your name and share your story.  Some days are harder, but we lean on all that you endured, and we remember your fighting determination as our single motivator.  We fight in honor of you and also all the other new DIPG heroes and warriors we have also come to know and love.  You would be so proud.  Thank you for teaching us never to give up.   

Happy heavenly birthday, sweetheart.   

Mommy, Daddy, Alexandra, Cade & Addison

Scout, Hoppy Jumpy and Jack too. 🙂

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#Avery Tuesday

Five years ago today, everything in our world changed.

On the afternoon of June 30th, 2015, we would hear the four letters that would re-shape everything about our lives but most painfully, prematurely take our beautiful Avery’s life.

DIPG.

Ever experienced something that was such a blur yet you so vividly can remember every single detail of that day?

That was 6/30/2015 for us.

Five years since our lives changed.

Five years since Avery was given a death sentence.

Five years since we were told to go make a lifetime of memories in as short a time span as we possibly could.

Five years since we were told that a cancerous tumor had been spotted on Avery’s brain stem, that there was no option for surgery, there was no life-saving plan, there was, essentially, no hope.

Five years since our hearts were ripped apart.  

We are different people now than we were five years ago.  Avery’s sisters and brother are different people.  We hit what we thought was the lowest of lows then spent 7.5 months watching the destruction that DIPG brings until Avery’s little body could no longer fight back.

This is not at all how we expected our world to be.

Yet Avery lost the most, by far, and it’s not close.

Five years since we took her in for an MRI, hoping for the best, not even preparing for the worst, because, no way this could happen, right?

Five 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.”

And everything changed.

Five 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.”

Only for five minutes later, have an oncologist tell us Avery had Diffuse Intrinsic Pontine Glioma, DIPG, and there was really, nothing, nothing that could be done.

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

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

There really isn’t a rhyme or reason why I go back and read it.  

But there isn’t 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.

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

Five 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 five 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 Defeat 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/donation/

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

#AveryStrong

Brandon, Amanda, Alexandra, Cade and Addison.