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.
Saturday, February 28, 2009
To HATE, to LOVE
So as I sit here in our whirlwind of hope and fear, certain things randomly cross my mind. So I've decided to express them. In some ways I feel as if I get them out - they won't hang over my head and come back to slap me in the face. I guess this is how I'm choosing to "deal". So I'm just going to be honest and just share this batch of emotions that enhance my days like sweet......and sometimes pungent spice.
I'll start with the lovely list of the things I HATE:
I HATE that my kid has Leukemia. No matter how you phrase it, no matter what day it is, no matter how positive a person can be and no matter what sugar you coat it with.............it sucks.
I HATE thinking of my life without Hunter. So therefore I try not to. I've seriously allowed it to sink in once........but, it was so incredibly painful and deeply, deeply crushing......I couldn't stand it. It was another one of those times when I felt as if I was just going to collapse. Not sure how I would survive that one.
I HATE that we have to return to hospital living on Monday and live there for the next 30 days.
I HATE that I now have a Bone Marrow Transplant file amongst Hunter's baby files.
I HATE how the casual sayings "live in the moment", "live every moment as if it was your last", "enjoy the now" are now my truths.
I HATE those few times when my overwhelming amounts of sadness seem to take me over like hot lava.
I HATE how I now look at every bi-racial person that I pass on the streets as a possible bone marrow donor for Hunter. For whatever reason, I don't think it's that rude or odd to walk up to a complete stranger and ask them for their bone marrow???? Even Obama could be a perfect match....??
I HATE how we are constantly living out of boxes. Between living in the hospital for 8 months last year and then packing up and coming to Oregon and then living on the road for 3 months and then going BACK into the hospital. We've never really unpacked and most of our stuff is STILL in boxes.
I HATE that we are now germiphobes. Because of Hunter's condition, we now wash our hands CONSTANTLY. And when someone sneezes around us, it's as if they just hocked up a loogey and rubbed it in our hands. We get so offended. It's quite funny, but oh so true. When his immune system is low........a common cold could bring on a whole slew of things. No fun. I also now open as many doors as I can with my knuckles and carry my own pen so I never have to use the one at the grocery or the bank or the gas station or the post office. FYI - those pens carry an amazing amount of YUCK.
I HATE that there isn't a cure for Leukemia and that the doctors don't know why children get it in the first place. One doctor basically said that we were just unlucky. huh. One more thing that SUCKS.
I HATE how sometimes my heart truly feels broken.
I HATE how sometimes when I'm looking at Hunter........even if he's super happy.........I still want to cry.
I HATE how I was told on my birthday of this year that Hunter's cancer had come back. We were supposed to be at a delicious dinner that night........instead we were at a hospital sobbing. Happy Birthday.
I HATE feeling so helpless.
I HATE that my sons life dangles in front of me like a carrot.
I HATE how sometimes it seems as if my flow of tears is never going to end.
I HATE how we feel as if we are living in a time warp.
I HATE that even with a bone marrow transplant - there is no guarantee that the cancer won't return.
I HATE that I sometimes already feel like a glass of red wine by 8am..................thank god for MIMOSA'S!!
...............our life doesn't completely suck. We are extremely fortunate and aside from all of this - our lives are perfect. However, Hunter is a HUGE factor in that "perfect" equation.
So now for the things I LOVE:
I LOVE that my kid is alive and that he's one hell of a fighter.
I LOVE that Hunter's in REMISSION
I LOVE that the tears do eventually end..................like my lovely cousin once said, "no one cries forever".
I LOVE all of Hunter's supporters of the Hunter Cause on Facebook. He's only 2 and he's tripled the number of friends I have! He's got somewhere around 500 now.......what????
I LOVE how I can doctor up hospital scrambled eggs to taste like something very delicious. Believe me...........it's really, very hard. Their eggs taste like crap.
I LOVE how I can walk to the hospital cafeteria in my pj's and no one seems to care......or even notice.
I LOVE that Lightning McQueen is Hunter's idol. He's pretty cool.......ka chow!
I LOVE how Hunter's first words were please, and cheese and beach. After his 8 months in the hospital last year.......everyone thought his first words were going to be........what the f**k ????
I LOVE all of the people that are participating in the bone marrow donor drive. My dear friend Jen who put it together and everyone who contributed and helped organize it and everyone that's being tested - WoW. Truly........thank you....from the very, very bottom of my heart.
I LOVE our family and friends and all of the people that have come to our rescue. We would have lost it quite a while back if we didn't have such strong and positive reinforcement from EVERYONE.
I LOVE what Hunter has brought into our lives.
I LOVE how the parents of children with cancer receive a handbook. It defines all of the stages of emotions that we go through. So when I feel like punching the shit out of a wall..........I can easily just go to my little 'ole handbook and have it tell me that this is normal. sweet. almost as satisfying..............but not really.
I LOVE Hunter's smile and his sweet little giggle. They fill me with such warmth and joy.
I LOVE that there is a chance that his cancer will be completely cured after the bone marrow transplant. We'll ride the wave of positive thinking.........always.
I LOVE my husband. He's takes everything in stride...........and he's also pretty sexy. oh yeah......and he rides the hell out of a motorcycle. KA CHOW!
Below is Zen tearin' it up on the beaches of Australia. He still rides wheelies for me.
Some pics of Hunter on his 6 month break last year - enjoying being cancer free. We kept him busy. Had lots to catch up on.
Lovin' on dad.
Hittin' Hollywood Blvd.
Met Frank...........wasn't too impressed.
Hunter in San Fran. A little concerned that he could be coyote bait.
Heading towards the Bay.
Back at the warm & cozy hotel.
Sweet sunsets with Dad and his little buddy Sebastian.
Chillin' out in Oregon.
Appreciating fine art in Hood River.
Along the oceanside in California.
Kickin' it in Australia.
Having some fun with dad driving through all the fresh water wash-outs along the ocean. I'll have to admit...........that was super fun.
Camp spot on the beach.
Labels: AML Leukemia, Blood Disease, Bone Marrow Aspirate, Bone Marrow Donor, Bone Marrow Transplant, Cancer, Leukemia
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That was a very powerful post that brought tears to my eyes. You are an amazing person and Hunter is so lucky to have you and Zen as his parents. We will continue to keep you in our prayers. Much love~ BTW he is one good looking kid!!!
You're a remarkable woman, Lenore. And thank you for all the pictures, they're remarkable...
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