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.

Wednesday, May 6, 2009 much strength does it really take??

I am so sorry for starting another blog being sad. I swear we've been really great and super positive the last few weeks. But Zen and I were given some information in passing yesterday as a slight concern over some blood results of Hunter's that had come back. It wasn't THAT big of a worry.........but, just something that the doctors found that they were looking at more closely. day and (4) 104 degree fevers's becoming a HUGE concern.

I continue to be amazed at how much pain we have to constantly endure. It just keeps getting more and more intense. Every time we feel as if we are getting closer to the end - some other terrifying virus, or fungus moves on in and starts messing with our already fragile world.

So that's the better of the two options of what could be causing Hunter's fevers - a virus or a fungus.

The other is the Leukemia coming back at full force starting to take over Hunter's body for the THIRD time.

The doctors will let us know the results sometime in the next 12-24 hours.

Nothing like waiting.

His spirits definitely seemed lower today and he's not eating much. His appetite has been really wonderful the last few to see a switch now is a little puzzling. He's not wanting to get down and run and he's being very clingy. He's never clingy unless he really doesn't fell well or something is bothering him.

I can't say I've ever felt this sad or this worried or this sick in my entire life. I've had some good crys..........but today, it was as if my whole body was pouring out of my eyes and it just wouldn't stop. My mind is seriously tangled.

Is this when the fight or flight instinct kicks in? Because we've been fighting and fighting and f 'in fighting and I feel as if we keep getting these unfair blows that Hunter doesn't deserve. And no matter how hard we's ultimately not in our hands. Sometimes I feel as if we're just swingin' at ghosts and there's no way to hit them........and I'm starting to get really angry.

It's such a horrifying fear when your child's life is put on the line - again and again and again.......and again. It puts me into full on panic mode and it's a HUGE effort to consistently stay calm and figure out how to handle the day after day news that is increasingly becoming more and more traumatic.

That's my baby. I have never loved something so wholeheartedly in my entire life. He's my love.

I know that there are positive outcomes and that people survive AML Leukemia. I get more and more emails and messages everyday on how there is ONE more survivor out there that was in Hunter's position at some time or another......and fought like hell and is now living and breathing and enjoying the rays of sunshine that everyone's meant to enjoy.

So seriously............c'mon.

Hunter's had 8 rounds of chemo and should be getting ready to receive one more with the addition of radiation and gracefully move on to his Bone Marrow Transplant. That's enough. He shouldn't have to suffer an ADDITIONAL round of chemo or MORE antibiotics or MORE antifungals or whatever the hell is going on in his body right now. We've put in our time and we'd like to go home now. Thanks for playing.

I'm truly screaming right now at the top of my lungs.

We will fight for as long as we need to fight.

We will survive the best way we know how...............

And we will continue to let Hunter know that he's a champion like no other. He's brought us to our knees and we applaud him and his spirit and his amazing desire to live.


catherino said...

I'm new to Hunter's site. Our good friend Matt Emerzian told me about you. I'm so, so sorry that Hunter has to fight this beast - and sorry you have to watch him do it. My younger son Nicklaus was diagnosed with neuroblastoma when he was 2 days old. We were somehow blessed with a miracle and he's now in kindergarten. But that underlying terror never really goes away completely. I just wanted you to know that you're all in my thoughts and prayers - for your strength and Hunter's healing.

Cathy West (Modesto, CA)

MKPatrick said...

Dear Lenore, Zen & Hunter,

You are showing an astonishing amount of love and strength. We're sending our love and healing energy to you on a daily basis. Your family is truly amazing.
Mary Kay, Matthew, Luke & Amelia

Amanda May said...

Okay, I'm going to go ahead say this, although I'm pretty sure it would REALLY piss ME off if I was in your situation (because sometimes "well-meaning" Christians can be incredibly obnoxious and insensitive...I hope I don't come across that way)!

I do NOT understand why things like this happen to little children, and it makes me MAD! But I know that God is sovereign and that, for reasons we will never understand, He allows bad things to happen to good people & little children.
If this was happening to my child, I am certain that I would have screamed at God until I couldn't scream any longer.
And I'm guessing that I would have beat my fists against the wall until they were bloody.
And then, as a last resort, I would probably fall on my face and cry out to Him...begging Him to heal my child. Because, when it all boils down to it, He is the ONLY one who can do it.
The doctors are great, but they are still just humans with human limitations.
God is bigger, and way more powerful.
And on top of being able to heal your sweet baby, He can comfort you and give you the strength to get through this HELL-ON-EARTH...without losing your mind.

I dare you. Scream at God. Tell Him how you feel. Beat your fists against the wall if you need to. And then beg Him to heal that baby of yours. Invite Jesus into the pain...and allow Him to comfort you like nobody else can. I promise you, He wants too. He can blow your mind!!

I am getting off the computer get down on my knees and beg God to heal your baby...