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.

Sunday, February 1, 2009

The peanut gallery...

...or was it an almond.....or a walnut???

So a pretty eventful week. Hunter threw us for a loop and it was not something that Zen or I or even the doctors were thinking was on the game plan.

It started on Tuesday. Hunter was vomiting and for some reason, he wouldn't stop. He was continuing to be fed with a tube that went in his nose and traveled all the way down to his belly. He was getting this food three times throughout the day and all through the night. He seemed to be handling these feeds with no problems whatsoever. So every day they would "up" his dosage and see if his body would tolerate more. Well is was all going perfect until the vomiting fest began. Everyone was perplexed. Was he getting too much food? Why is he throwing up now after he was doing so good?

So Tuesday was the crappy puke day and then Tuesday night.......oooooh nelly. Dad got puked on three times. Once at 1:30am, again at 4:30am and then another brief episode at 5:30am. Our job the whole night was catching throw-up and changing sheets. He kept us busy. On the very last puke..........up, up, and out came the feeding tube. Out his mouth! So now he had the tube going in his nose and the other end was now coming out his mouth. I often keep referring to the idiot high school kid, (in almost everyones past), that would take the school lunch spaghetti and inhale it quickly in his nose and then string it out his mouth for some lunchtime entertainment. Well Hunter wasn't laughing and it looked incredibly uncomfortable. So Zen, acting quick on his feet, yanked it out and gave Hunter some relief. It seemed to make it better. Gross, but better.

So the feeds instantly stopped and we had to wait until the doctors made their morning rounds to see what our next step was going to be. Hunter is terribly skinny and to stop food going into his body is not an option.

Well now......morning after, or shall I say a couple of hours later....right around 9am - Hunter decided to choke. And I don't mean a slight cough and showing some discomfort. I mean full on choke, gasping for air and not being able to get any. This lasted for about 15-20 seconds of no air going in or out and Hunter's face turning bright red. I keep thinking I can't see anything else more that will frighten me to death......nope, I was wrong. Hunter was not breathing. Zen picked him up and slapped him on his back a good four times and all he kept saying was, "come on baby.....breathe.....breathe". After 20 seconds and a few slaps - Hunter caught some air and started to breathe again.

So we thought that would be the end of that excitement - but guess what? Hunter had about 4 more episodes like that where, completely out of the blue - he'd start choking and gasping for air. No one had any idea what was happening to our little man.

Because he had chemo and the effects of the chemo are starting to kick in.....Hunter has no immune system. So the doctors don't like to operate or do surgery on anyone who has no immune system - so another bronchoscopy at this point was out of the question. Too dangerous and the risk for infection is too severe. Something was dreadfully wrong and there was no way to find it.

Well now by the fifth choking episode - Zen had become a professional back slapper. Hunter's face was turning red again and this time it seemed like it was lasting a good 20 to 25 seconds. Too long. Zen slapped and slapped and slapped....come on baby....come on......slap, slap. And up came the nut that was stuck in Hunter's airway and it gracefully landed right on Zen's shoulder. WHAT???????? Are you kidding me? After dealing with Leukemia and pneumonia.....a NUT was about to take our kids life????

Just seems unreal. For God's sake.

Ever since that nut came out - Hunter has been perfect. Seriously. No more puking, no more choking and he's eating like a champ. Real food!!

Not sure how the nut got there and there's a huge debate between Zen and I and all the doctors as to whether or not it's an almond or a walnut. But regardless of what kind of nut - Hunter will be on the no nut diet until he's 25 and knows how to do the heimlich remover on himself, (just in case we're not around). Too bad for him......but good for mom and dad.

ps. To give Zen some credit - he did think it was a nut and suggested that to the doctors on the morning rounds. That's when the bronchoscopy was ruled out to see if it is in fact a nut that is blocking his airway. Dad was right. And dad got it out.

The nut stuck in Hunter's throat. We placed it next to a pill so that you can see just how big it was.



Happy times when the feeding tube was working.







Not so happy times. Resting inbetween the throw-up spells.



Post nut and feeding tube. Woo hoo!! Waaaaaaay happier.





Admiring his hero.

3 comments:

MKPatrick said...

A nut??? That's nuts!!! Zen, you are my hero! Anyone who can save his own child's life...repeatedly....WOW!! And Lenore, you're slapping the heck out of that disease and continuing to let the love flow with such grace.
Thanks for keeping us informed. Wish we could drive down the street to see you.
Hunter, keep on keeping on. You're in great hands...literally.
Love ya,
Mary Kay, Matthew, Luke & Amelia

MKPatrick said...

A nut??? That's nuts!!! Zen, you are my hero! Anyone who can save his own child's life...repeatedly....WOW!! And Lenore, you're slapping the heck out of that disease and continuing to let the love flow with such grace.
Thanks for keeping us informed. Wish we could drive down the street to see you.
Hunter, keep on keeping on. You're in great hands...literally.
Love ya,
Mary Kay, Matthew, Luke & Amelia

Anonymous said...

That is the most incredible series of events. Nicely done Dad, that would paralyze some parents into a corner while ringing the Nurse button helplessly. Incredible, so glad Hunter dispelled the Nut and the choking terror disappeared. You two are absolute warriors, and Hunter lives up to his COOL name. Hang in there, the pictures are great, love the Sesame Street story!!!

Matt and Michelle