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.

Thursday, February 12, 2009

Killin' time...

The closer we get to transplant time, the more information is released and the more terrified we become. I've never been so scared in my life. To look at Hunter and think of the hard truths that the doctors have divulged is stabbing me in the heart and every now and then there's a slight twist. I feel as if I'd completely die if anything ever, ever went dreadfully wrong. My mind chooses to not go to those dark places and I'll have to say, I don't think I'd be able to survive this if it did. It's absolutely horrifying and doesn't seem bearable by any human standards. Often times when I'm laying next to him during the night....... instead of sleeping, I just stay awake and stare for hours. I rub his tiny face, I listen to him breathe, I cuddle his little toes and I whisper sweet little things into his ears. I'm sure he hears me. I continue to tell myself that he's going to be one of the kids that survives and I truly believe that - but every now and then something scary sneaks in and I have to beat it down with steel fists and beg for it to leave. I'm on my hands and knees.

So we've now been here for 3 weeks and I can't say I've been counting the days yet. Still seems like nothing compared to the 8 months we lived in the hospital last year. I guess I just don't really seem to be phased by living in a hospital anymore. I do get sad however, thinking about all the time Hunter has lived in the hospital.......not fair.......but we're doing the best we can to make it as normal for him as possible. He's been in a box with one window for 21 days and is going to continue to live in a bubble for the next 6-8 months.

So everyone wants to know how we spend our days and whether or not we've gone stir crazy or have cabin fever. I've attached a few photos so you can see how we are killin' time.

Below is what Zen and I usually look like when we wake up in the morning. Picture that with morning breath and doctors hanging over our bed, first thing in the a.m., wondering how things are going. They definitely don't see us at our best! uuuuuuugly.

This is what we get from Hunter when we tell him it's time to take his medicine. He looks cute now, but by the time we lay him down and show him the syringe...........he's not so jolly.

I gave him his first hospital haircut. So below is a picture pre-fro and then after, where we have slick Rick. Once again...........he drives the nurses wild......hee hee.

He hangs out in bed alot watching movies. Instead of sleeping with Teddy Bears.......Hunter sleeps with DVD's. In fact he's the only 2 year old that I know of that fully knows how to operate a DVD player. Sweet.

We read lots of books. Lightning McQueen is his favorite.

We eat lots of cookies. Very fattening and definitely contributed to putting some meat back on Hunter's bones!

In addition to eating cookies, I get to eat lots of spoons. For some reason, Hunter likes to see how many spoons he can cram into mom's mouth. I'm fully surprised at how big my mouth actually is - impressive.

Hunter takes lots of pics of himself. Photographer in training. He's obviously very good.

He stomps around the room in his Lightning McQueen crocs.

He loves the windowsill, just like back in LA. So sometimes he plays........sometimes he just hangs out.....

And sometimes he just looks out the window.

It's really pretty to look out the window when there's been a fresh snowfall. We've lucked out and have had 3 of those so far! This is the view from our room window.

This is also a really fun game that Hunter seems to really enjoy. He sticks as many stickers on my face that could possibly fit and then he likes to rip them off. Hmmm.....the things I do for this kid......

This is one of the last interesting pics. Does anyone know what that is?????

We eat lots of pistachio's.........needless to say - we've already learned our lesson and we now take a peak before we pop each one into our mouths!

Oh yeah.......and we also take lots of naps. Dad and Hunter crashed out. This is when I sneak in lots of kisses.

1 comment:

MKPatrick said...

Thanks for sharing your days with us. We think of you everyday...sending sunshine from LA (and looks like those Buffalonians are sending a little of the white stuff!)
The Patrix