We lost our precious lil' love to AML Leukemia on March 8, 2010. As an incredibly strong family unit, we fought this horrid disease for 2 1/2 years........only for it to come back a fourth time to finally claim Hunter's life. Zen and I are truly devastated and the beautiful light that used to brighten our days and enhance our souls, no longer exists. Our hearts are truly and forever broken. We have a long journey ahead of us, but we are committed and devoted to surviving and living our life embracing Hunter's amazing spirit. With tremendous honor, we will carry on his legacy of love, his legacy of courage and his remarkable ambition to live strong, live fearlessly and live with passion.

You will remain forever in our hearts baby love. We carry you with us every moment of every hour of every day.



Monday, June 14, 2010

Stepping Stones


.....made of glass.....

So today is the year anniversary of Hunter's Bone Marrow Transplant. The transplant that was supposed to save his life.

This was supposed to be our 1 year mark, a celebration - Hunter's "2nd birthday". This was supposed to be when we were going to be able to worry less about a cancer relapse, and worry more about the normal things of a 3 year old child - "normal" worries that we would have welcomed with pleasure. This was supposed to be the time when Hunter should almost be back to normal after healing from what his little body just went through over the last 12 months. This day was supposed to be many things.......

We were told when he got the transplant that there was a 90% chance that the cancer was going to return. Because his cancer had already viciously attacked him 3 previous times - the odds were obviously against us. However, if we learned one thing from this dreadful disease, there is no rhyme or reason as to who makes it and who doesn't. Some kids are only given a 1% chance or survival and somehow they make it. Some kids are given a 5% chance of survival.......and somehow they make it. Some kids are given a 50% chance of survival and somehow, they don't make it. So how were we to know. We didn't. So the last thing I ever wanted to believe was that Hunter was not going to make it. In my mind - he was a fighter, his body was perfect and his organs withstood all of the toxins that were thrown his way. He was amazing throughout the entire process. He championed his way through everything. HE was supposed to make it. I'm slightly angry about that outcome.

This is the one time in my life that I can say I sincerely want to beat the shit out of something. I've often thought that if cancer had a face, I'd rip it off and torture it for the rest of my life.......with a smile - and not think twice about it. I guess this is the tormented side of me rearing it's ugly head. The defeated side. The side that should be addressed, but not given any more time than needed. I would never let this side take over and rule my days or my mind. But it's nice to know it exists.

A couple of times over the last 3 months, since Hunter has passed, I have said that our life sucks. Zen is VERY quick to correct me and say that, "our life does not suck, just this particular time in our life and the ending of our experience sucks. But our lives are amazing and we need to always remember that". So I do. What Hunter brought into our lives is unforgettable. The love, the laughter, the undying compassion and understanding. The bonding, the togetherness, the true sense of family and the overwhelming amounts of strength that we were able to witness. The strength we witnessed in ourselves and in each other, the strength we witnessed in our families and the strength we witnessed in our friends, as well as strangers. It all kept us strong and in many instances, made us feel indestructible. The times when we needed to feel love, we felt it. The times when we needed to feel powerful, we felt it. And the times when we needed to feel the victory, the victory was felt by many. They say there is strength in numbers.....and I firmly believe that. So many of us fought Hunter's battle with him - endured his suffering, endured his pain and endured his defeats. And, our army always stood strong.......til the very end, and I'm forever grateful and extremely proud of that.

These stepping stones made of glass are now our hurdles. We could chose to step on these glass stones on so many days for the rest of our lives. So many days to remember that cause significant bleeding. The day Hunter was originally diagnosed with cancer was a day we'll never forget, Mother's Day, Father's Day, his Transplant Day, the 4 different days that he relapsed, which one was on my birthday, the day he was born.............the day he died. And there are many others that I just don't have the energy to list. We could "sad" day ourselves to death. I don't think Zen and I are too interested in living out our lives this way. Doesn't leave room for much laughter. And if there is one thing that Hunter made us appreciate it's how good it feels to laugh. I don't think we would ever give that up. And we certainly won't surrender to sadness. So we'll slowly start turning these glass stones into solid rocks and step on them with Hunter's confidence, step on them with Hunter's courage and step on them with Hunter's passion and desire to always fight and live strong.

The lessons we've learned and the ways in which we have grown are only gained by experience. We constantly need to focus on the treasures that Hunter brought us. Each and every day we had with him was a gift. A gift like no other. And he was the most brilliant package with the most unbelievable bow. A package that I will hold deep in my heart on every "sad" day that there is to come. I will continue to treasure his love, treasure his life and treasure his spirit.


Zen's Thank You Tribute to Hunter at his Memorial Celebration:


To our son,

Thank you for being so courageous and strong. You endured more pain in three years than most people do in a lifetime. And yet your charisma, love for life and your spirt - never stopped shining.

Thank you for trusting and loving your parents so much. Lenore and I had to make some very hard decisions and every time we doubted ourselves for putting you through more pain - your ferocity for life told us to keep fighting. You gave us your courage and we were able to do what we had to do.

Thank you for always smiling and laughing. You gave us your energy and special light at every opportunity. At times that was all we had. We cherished every little laugh. We loved every smile. We absorbed and celebrated every moment we had with you. Thank you for giving and giving and giving.

Thank you for always dancing. The Leukemia took away much of your ability to walk, talk and even move on some occasions - but even when you were too sick to move you body, your found a way to move your soul. We called it the eyeball dance and you were always willing to perform. Your dancing, your love for music and your awesome rhythm made even the darkest of days beam with light.

Thank you for being our son. You have made the world a better place. You have made those that have read and endured your story better people. You have taught parents around the world to hug their children a little tighter. You made your mom and dad better parents. You will always be cherished and never forgotten.

"Dance in the clouds sweet baby love. Mom and dad love you so, so much and you will remain forever in our hearts".


Hunter on Versed about to go in for one of his Spinal Taps. This was before his transplant and was a check to see if he is in remission. If you look closely, you'll see a little wiggle towards the end!




Hunter's Eyeball Wiggle and Dance after his Cat Scan. This was about 7 months after his transplant.




Hunter's FAMOUS Countertop Jam.

18 comments:

  1. Your post took my breath away, what happened to your Hunter is the story of so many kids battleting this terrible disease.

    Hunter was a beautiful child, full of love, courage, and energy, he sweet giggles and eyeball dancing are just too sweet. I cannot imagine the pain your are going through, but I what I know is that there is a God that loves you and loves your son very much, my prayers are with you and your husband.

    With love,

    Martha Rivero

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  2. Thank you Martha. His eyeball dancing was always a hit with us......just soooooo cute. I miss it terribly. The pain is deep and doesn't really seem to be that much easier with each day....I guess we are just dealing with it better. Looking forward to welcoming his little brother into this world and hoping that he is just as cool as Hunter!!! Much love and many blessings sent back your way. XoXo

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  3. Amity Candee - Stones of strength..... Praying for you today!

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  4. Anna Perry - In our hearts today and more, loved Hunter's" counter jam" truly, absolutely loved it!!!

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  5. Heather Hotvedt Bryce - Wow, your amazing. You and Hunter continue to inspire me. You deserve all the happiness in the world.

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  6. Angi Pauer Ignasiak - I feel the same way. Nadia was supposed to have her transplant around fathers day and kept relapsing before they could get her there

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  7. Jacqueline Cannon Collot - I can tell you that we still can not 'relax' and breathe easy- anyone stricken with cancer, especially pediatric cancer never has worry free days. Those are a thing of the past. At best, we can rejoice in the "good" days. You are always in my thoughts and prayers.

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  8. Leslie Klinck - My heart goes out to you all!

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  9. Your profound words always amaze me. Much like Hunter amazed us all... :)
    Really Lenore, a book is what you need to share Hunter and your story. I read your posts to my husband and he is amazed at your courage, strength and love. Your story makes us strive to be the BEST parents we can be to Olivia, in Honor of Hunter and your never ending love for him....
    Huge HUGS and never ending prayers...
    Paul, Cathy & Olivia Holt

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  10. Thank you so much Paul, Cathy and sweet Olivia..........I am thrilled to hear that Hunter amazed you- makes me feel really good. He truly was an exceptional child and I'm so very proud of everything he accomplished.

    I am working on turning his blog into a book. It's pretty much written and we have beautiful photographs to accompany all the writing.....now I just have to put it all together with a few added features and then submit it. I work on it here and there - so hopefully by the end of summer it will be ready.

    Thank you for following and for sharing your heart with us....it's very much appreciated.

    Much love to you......Lenore, Zen, Angel Hunter and soon to be Baby Ryder

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  11. Guislaine Pickering - I loved your "Stepping stones" update, Angel Hunter is an amazing force for so many people!
    I think of him often :)

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  12. hee hee.......thanks Guislaine.......a force is what he was - for sure. His little being seemed so very powerful and so full of many, many wonderful things. XoXo

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  13. Janet Melton Byrum - I just looked at your blog for the 100th time. I see the same thing every time! Hunter a precious child loved so very much, that even on his most painful day, his parents could get him to smile! Hunter,Zen and Lenore, you are my SUPER HERO'S!!!
    xxoo

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  14. Terry Robertson Ince - Love to you and Zen... I always enjoy your updates... So much of it strikes home; so real, so personal... xxooo

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  15. Tammy Muffett Bottemiller - Hunter....you are a very special angel! Your video's made me smile and laugh today! Sending you kisses in Heaven

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  16. Jane St Bernard-Voight - He was trying to dance!! I saw his little head start to move like when he dances!! Those giggles were soooo sweet!! Love it!!

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  17. Julie Serafina Pardee - It's so nice to see you Hunter. You always inspire me little one.

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  18. Peggy Morgan Davis - Thank You Lenore & Lil Angel Hunter for always reminding me of sweet blessings....xoxoxoxo ♥ MUAH!

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