Death of a Superhero

A Family's Story about Courage, Bravery and the Defining Moments of LOVE

Our sweet, lil' baby love lost his battle to AML Leukemia on March 8, 2010. We fought long, hard and very aggressively for 2.5 years, only to have his cancer come back for the fourth time to finally take his life. He was only 3 years old.

This entire blog is about Hunter's amazing journey. It's about his life and his love......his determination and his courage.......his absolutely, brilliant personality, and the affect he's had on people all over the world.

He's left an unimaginable footprint on this earth and has changed the lives of thousands of individuals. People who didn't realize how precious life was, now live it with extreme gratefulness. People who took every minute they get to spend with their children for granted, now savor every last second. And people who weren't quite sure what love is all about, now love deeper, love stronger and love with every ounce of their soul.

People all around the world have shared their love, their well wishes, their prayers and their inspiration, and we could have NEVER achieved as much as we did without them. We are humbled by their generosity & their true friendships & are forever grateful for every last person that has come into our lives through our experience with Hunter. He was our precious baby love who we loved and cherished with all our hearts and we are forever crushed and terribly, broken-hearted.

Dance in the clouds baby cakes. Mom & dad are watching proudly & you will remain so very close to our hearts for all of eternity.

Saturday, April 4, 2009

Loaded Gun



Had a good cry last night.  Feels like it lasted for hours.  My eyes are still swollen and puffy as I type this morning.  Hunter is still asleep.

So we got the talk yesterday on the brutal truths of every possible scenario regarding the Bone Marrow Transplant.

Basically, Hunter is in for the hardest challenge of his life.  

And so are we.

The bottom line is that Hunter has a life threatening disease.  His AML Leukemia is extremely aggressive and has now survived all of the chemo that has been used to fight it.  Our only option is to go to transplant and replace his marrow and hope that his cancer doesn't return.  If his cancer does return after the transplant.........we've been told the options are pretty dismal.   (This was the "worst case" scenario Doctor speaking.  I politely asked him before the talk if he could make sure that the "best case" scenario Doctor show up to lay out all the truths and he politely told me that he'd bring both).  

Aside from the typical, horrid side effects from the chemo and the radiation, Hunter might also experience extreme mouth and stomach sores, fluid overload, severe abdominal pain, liver failure, kidney failure or heart failure. Oh and aside from all of that - it's never really over.

If and when Hunter survives all of this..........as he ages - we'll have to deal with all the other issues of the harsh treatments that he's receiving.  He could not experience puberty, (which can be brought on by meds apparently), his growth could be effected, he could have learning disabilities, he will most likely be sterile and won't be able to reproduce and he could have permanent organ damage that could cause serious issues from the huge doses of chemo and radiation that he has and will continue to be treated with.

hmmmmmm...................not so bad.  

We were told that since his disease is life threatening, the treatment itself is also life threatening.  After transplant, they've given him a 30-50% chance of being completely cured.

Oh and I can't forget the Bridges Team that we will have the pleasure of meeting.    I'm sure a lot of you haven't met them yet or even care to.  They are the "end of life" care team.  We didn't get to meet them yesterday, but apparently next Friday will be our meet and greet.  I've never wanted to NOT meet someone so much in my entire life.



Found the tiniest flower to smell.


I feel as if there is a loaded gun pointed right at my heart and it could go off anytime between now and the next 90 days.

I've never felt so lost.  It's almost as if I've been in a constant daze for the last 12 hours and I have to keep bringing myself out of it.  I'm forever choking back tears.  Every day I have to wake up and fight this terrible, frightening feeling in my gut.  Sometimes I wake up and just feel as if I'm dying.  

From this point on we'll be spending every breathing, waking moment with Hunter.  

Zen actually just made me laugh.  Wow.  What a nice feeling.  

Hunter is going to be fine.  Zen and I are going to be fine.  This is going to be the shittiest time of our lives............but we're deep in the trenches now and we have to get out.  We will get out. We've got big diggers............and we're ferocious.  

7 comments:

Matt said...

Ferocious you ARE. We are sending our warmest and most healing thoughts, POSITIVE energy is coming to Hunter from all different directions. You two are the strongest people we will ever know, period. Hunter is going to kick it's ASS, and he's going to grow up to be STUD.

Much love, Matt and Michelle

MKPatrick said...

Dearest Lenore, Zen & Hunter,
Our thoughts and prayers are with you in this uncomprehensively difficult time. Everyone will do everything humanly and divinely possible for your boy.
With Love & Light,
MaryKay, Matthew, Luke & Amelia

alanacraig2006 said...

dear lenore-
i know you don't know me and for that matter, todd and i weren't the closest of friends in high school. more like we sat together in class but...
please know that your blogs have brought me to tears many a day. i sit here now crying for you and todd and the heartache you both are feeling. hunter is 3 weeks younger than my daughter, megan, and i can NOT imagine what you are going through.
please know that i think of ALL of you everyday and pray that you will get through this. hunter is such a beautiful child and i hope that you will see him grow up into the wonderful person he is and will be.
you are so courageous and humble and HONEST about how this makes you feel. i am sorry that you have to go through this.

alanacraig2006 said...

dear lenore-
i know you don't know me and for that matter, todd and i weren't the closest of friends in high school. more like we sat together in class but...
please know that your blogs have brought me to tears many a day. i sit here now crying for you and todd and the heartache you both are feeling. hunter is 3 weeks younger than my daughter, megan, and i can NOT imagine what you are going through.
please know that i think of ALL of you everyday and pray that you will get through this. hunter is such a beautiful child and i hope that you will see him grow up into the wonderful person he is and will be.
you are so courageous and humble and HONEST about how this makes you feel. i am sorry that you have to go through this.

Amanda May said...

I'm praying for Hunter!

Tara said...

Lenore, I am sitting here holding back tears and I have never met either of you, but my goodness girl I cannot imagine what you are going through...I am SO sorry. I know in my heart of hearts Hunter will be fine, you will get through this and there are so many people fighting for you and praying, God has to hear that,right? My thoughts are with you 3 always.

Amanda May said...

I just want you to know that I am praying for Hunter...and Mommy & Daddy too.