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, October 15, 2009

Jaymun's Journey

........and what a journey it was.

Such a sweet, beautiful, little soul that will live in mine and Zen's and Hunter's hearts forever.

We've been following his courageous story and applauding all of his efforts, as well as his parents, for some time now. We are very, very, very saddened to hear of the news of Jaymun's passing and have still yet to recover.

Jaymun's father has been a huge and integral part in figuring out and managing Hunter's herbal regimen. We can only hope to continue to be guided by his knowledge and all of his amazing accomplishments in keeping Jaymun's cancer under control and keeping his son alive for much, much longer then the doctors every thought was possible. Truly remarkable.

Our deepest love and sympathy and warmest wishes filled with strength and peace and comfort are being sent to his family.

Jaymun......may you rest without pain, may you rest without fear, may you rest with all the warmth and cuddles and snuggles that hugged you so tightly when you were with us. You made such a difference in our lives........and you will never be forgotten.

Friday, October 2, 2009

Happiness granted........& happiness taketh away

(109 days Post Transplant)

We found out in clinic on Wed. that they detected a Trisomy 21 cell in Hunter's blood work. They've told us that it could be an active cancer could not be. They apparently only found 1........but, unfortunately, that's all it takes. We'll test him again in another month, and apparently the doctors are hoping that his new immune system takes care of it and terminates it on its own.

Sooooooooo not too bad.....just a months worth of stress & terrible heartaches and a constant fighting back of the mental demons that seem to be getting harder and harder to keep further away from the forefront of our minds.

So here's the deal - the Trisomy 21 genetic marker that Hunter has been spotted with is actually the down syndrome chromosone that is prevalent in most down syndrome children. Hunter doesn't carry this cell make-up throughout his entire body.......but his CANCER cells DO. So, in the past, whenever they've spotted the Trisomy 21 cell.............the cancer was usually piggy backing. It's very unusual and another characteristic that makes Hunter's AML Leukemia unique.

Needless to say..........Zen and I were once again devastated and spent most of Wednesday and Thursday confused, sad, randomly crying.......and just plain out of words. I feel as if there are a thousand needles stabbing at my heart on a pretty consistent basis, and those needles are speeding up and getting sharper every time Hunter says "mom", or "daddy" or laughs or shows us something cool or looks at us..........pretty much any interaction that I have with Hunter is slightly hurting right now and it's such a sad, sad, maddening state of mind to have to constantly continue to get out of.

For now we have to continue to focus on that little love of ours and enjoy every last bit of him. We completely realize that. Zen and I keep reminding one another of this simple act and definitely assist each other when one of us spots the other zoning out and about to crash and burn. It's pretty recognizable in our faces now when we are thinking about our life and our son and why we have to fight so hard to keep him alive and how truly unfair this all really is.

We will go to clinic twice next week and like they normally do, they'll draw blood and run labs and look for any additional unusual activity going on. We spoke to one of his doctors before the weekend and she reassured us that THEY are NOT freaking out yet. They feel as if they need to keep a VERY close eye on it, but that one cell just wasn't enough to feel as if Hunter is about to go into a full-on relapse. It is actually common for one or two to be spotted in post bone marrow transplant patients, but in Hunter's case......because of his history and how his cancer presents could be the devil.

Hunter going in for his Bone Marrow Aspirate, obviously already sedated. It was day 98 post transplant and it was actually on his birthday.........geez.......not such a fun birthday.

Zen and I waiting outside the procedure room waiting to pick him up.

Waiting anxiously for him to wake up.

Off we go..........just another day in the life of Hunter Zen Thawley.