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.

Monday, January 19, 2009

Saddness has fallen on so many......

I can't really think of how to start this off. Everyone wants daily updates and it seems as if things are changing constantly. One minute he's fine and stable.......another he's desperately fighting for his life. His pneumonia is not going away and there is something in his body that is causing very severe fevers. He goes from 101 to 104 degrees on a regular basis, he's vomiting often and he's exceptionally weak and tired. He finished a 3-day round of chemo last week and I'm sure his beautiful brown curls are going to start falling out again shortly.

He's been on oxygen now for 8 days and he also has a feeding tube going in through one nostril all the way down to his stomach. They've given him morphine twice for the pain he's experiencing with everything going on in his body. Just in the last 5 minutes he was stabbed with a needle twice to try to place an IV for the Cat Scan contrast to go in to try to locate the site of infection. There are no more large veins in his body that are accessible. So now the CT will be done without contrast. It's not as informative without the contrast, but they don't want to wait any longer. The infection needs to be found.

My mind continues to race.........sometimes it slows down.......sometimes I feel as if it just melts. I miss his happy face and his smile terribly. I'd give anything just to see a glimpse of it again on a daily basis. I miss holding him in my arms without all of the tubes and wires connected to his body. It's hard to snuggle when every loving squeeze could possibly cause him pain. I miss feeling normal.

Zen and I are exhausted. We try to alternate sleeping with Hunter so that at least one of us can get a good nights sleep. However, it doesn't seem to matter who's sleeping with him or not. It's hard to sleep. Constant interruptions, lots of vital checks throughout the night and we both basically sleep with one eye open to make sure Hunter's as comfortable as possible and always has everything he needs.

I know we will get through this. However, it's going to be like scraping our already broken hearts across a field of hot, burning coals. The field is long and the battle is more intense then I could have ever imagined, but on the other side.......there is light.

We've received extremely encouraging emails from so many others that have already had a child go through a Bone Marrow Transplant. Our LA Oncologist is also very optimistic and sprinkled that much more hope on our cupcake of fear.

We want to thank EVERYONE for all of the love, support, prayers and beautiful messages that have been delivered to us. I honestly look forward to them every day and it's what allows me and gives me the strength to keep on going.

I'm so sad and it hurts so much.

Hunter going in for his second Spinal Tap, (aka Lumbar Puncture). They'll be injecting Chemo into his spine to prevent his spine from being infected with Leukemia. They gave him the "sleepy juice" so out like a light as dad lovingly sees him off.

The Chemo injector. Here is Hunter's IV pole that houses all of his antibiotics, chemotherapy, fluids and feeds. Pretty intense.

Getting an Ultrasound on his lung. Trying to see if there is a fluid sac of some sort that might also be restricting his breating.

Much more relaxed when it's done. Hence the crossed legs. All he needs now is a cigar.

Our hospital room. This is where we'll be for the next 5-6 months. Zen's over there watching football. He's pleased with the top notch accommodations here at Doernbechers.

Hunter also a big football fan. Seems to chill him out.

We were finally able to get a smile. Took a while........but we wouldn't stop til we got one. I've wrapped it up and stuck it in my pocket for the next rainy day.

1 comment:

Anonymous said...

Hunter is so very lucky to have such insightful & loving parents... you guys are amazing, all 3 of you...