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 14, 2010

Living life on the edge of fear....

......and finally feeling the desire to jump off.

Our worst nightmares are surfacing. Our hearts and souls and minds and bodies have been tortured beyond belief......and the worst is still yet to come.

Hunter's cancer has returned for a fourth time and we are out of ammunition. His little body has seen every type of chemo, including experimental chemo's and the most potent combinations of other chemo's, and the disease doesn't seem to want to stay away. He has been through 9 rounds of chemo, full body radiation and a bone marrow transplant.........and we are officially at the end of the road. There is nothing left that we can do to save his life.

And because this ferocious cancer won't leave his body, our most beloved and treasured gift in the whole world will soon be taken away from us. Just like that. After 2 1/2 years of battling this horrific, beastly disease - it's finally going to win. Zen and I have never felt so defeated and hopeless and broken in our entire lives. We gave up everything for Hunter and his fight. We stayed positive, we defied all odds, we loved him more than life itself.....and we are still being denied the right to keep our child. I can't even begin to explain what this is doing to us mentally. To know that we only have a limited time left with Hunter and then we will soon have to witness his beautiful spirit and amazing soul slowly leave his body is beyond comprehension. To know that the beast is just waiting at the door......with a grin on his face........and we have no power whatsoever to keep him's maddening and frightening and so, so, so incredibly heart wrenching and sad. Every single moment that we are not with Hunter, which is only when he is sleeping, we are falling apart. This is truly a tragic ending to such an incredible and heroic fight.

To speak for myself......even though I know Zen is feeling much of the same emotions, I feel completely lost. My hope has been beaten into the ground. I feel as if I no longer believe in miracles and I no longer believe that love conquers all. The wind has been taken out of my sails, the carpet has been forcefully and viciously pulled from underneath me and the brick has officially slammed me in the face - like I've never experienced before. And every five minutes - that brick continues to slam me in the face, harder and harder than the blows before. I feel dark and hollow. I feel a terrible bitterness and an unexplainable anger. I feel wrecked and extremely, emotionally distraught, and I am so, so, so heartbroken.

To know that I will soon no longer be able to hold him, or see his beautiful smiling face or hear his soft, precious voice, or caress his cherished little body is making me go insane. I wanted him with me forever. I wanted to see him grow into the amazing young man he has proven himself to be. I wanted to continue to shower him with love and warmth and tenderness the way we have in the short time that he's been alive. I so, so desperately want to keep him.

He is sleeping right now as I type and I am sitting here sobbing. Every so often, I feel as if it just can't be real......that it's just not happening. That this is just one big misunderstanding and we are, in fact, going to be rewarded for all of the pain and suffering and sadness that we've had to endure over the last 30 months. But, it's real. It's as real and as horrific as it gets. We STILL have him in our life right now and the pain is so completely excruciating. I can't imagine what it's going to be like when he is really gone. I have to grasp onto things now as I walk just to keep from collapsing..............I can't even fathom what's to come.

With all of that said - we are continuing to love on Hunter like never before. We are drowning him in kisses and holding him and squeezing him tight every single second we get. I tickle and smooch his tiny, little toes constantly. I look him deep into his eyes and make sure that he understands when I tell him that mom and dad love him so deeply and that we will ALWAYS be with him, loving him, cherishing him and applauding his amazing and courageous efforts.....wherever he is. We try to get him to smile as many times as we possibly can and are constantly figuring out ways to make his time left the most enjoyable and the most memorable......for all of us.

I guess I should take back the fact that I no longer believe in miracles. The fact that we had Hunter in our life for as long as we did was a miracle in itself. Zen has said several times and I definitely agree........We wouldn't take our time with Hunter back. He has made us better people, he has shown us love that is so deep and so fulfilling and so completely rewarding. He's made us stronger individuals and he's brought immeasurable joy into our lives. Joy that we would have never experienced without him. He has truly made our lives worth living. Zen has also reminded me that this time that we have left with him is a gift. A beautiful, beautiful gift. We know that the end is near and we now get to cherish him with every ounce of our souls.

We have an everlasting love for him that we will carry with us every single moment of every hour of every day. And when Hunter dies........a huge part of Zen and I will die with him. It will be a long time before I can look at his sweet face in photos or watch his videos and not crumble. It will be a long time before his sweet voice in my head will not bring tears to my eyes that will probably flow for days. It will be a long time before I can hear his little footsteps throughout the house and not want to follow them to wherever they lead with hopes that he'll be there smiling and laughing once I reach him. He will go pitter patter on my heart for days and months and years to come, and with each tap I will feel pain. But we've been told before and reminded often that no one cries forever. The amazing amounts of love that we graced upon Hunter and the buckets and buckets of love that I truly believed would conquer Hunter's cancer........will now have to conquer mine and Zen's devastation and pain and give us the strength we will need to press on. Our love is all we have left. Hunter is a legend and is and always will be an inspiration to thousands of people and he will live on in so many peoples hearts. He's a true champion and has shown us all how to live. Live strong, live fearlessly and live with a passion.


Anonymous said...

All I can pathetically do is cry for you, pray for you, and send love your way.

I wish I could do something. Hunter is so beautiful, and it makes no sense at all. None. I don't get it.

My heart is as heavy as can be, and that is painful enough. I cannot imagine how you feel, how surreal this must all seem.

He's beautiful, he's an angel, why things happen that are more than we can bear, I don't know.

No one had better say, "you'll be fine with time." Because he will always be real, and live in your hearts, and his name will forever pull at your heart. Forever.

Sweet Hunter, I never saw a more beautiful boy. Yet, he was meant to be. That much is evident. He was meant to be. He has molded you, and shown you a different path to life than you ever would have known. He has dragged you kicking and screaming through the fires of hell on earth with your suffering. Knowing all the while, that he was meant to be, and sent here to live his life, for whatever amount of time there was. He has refined you into the people you've become because of him.

Such suffering, and no way to understand it, yet you can see the golden thread of his life woven into the tapestry of yours. To be there forever. Yes, he was here much too short a time, but the length of time that he was here does NOT diminish his importance. "Do not let the length of my days be a measure of my worth."

Love to all 3 of you. And, Hunter, I've met an angel...


Matt Nolan said...

We love you. You're incredible Human Beings, to share your mind, heart, and soul with everyone who cares so deeply about your Journey, this horrifying chain of events that you've faced with Courage that very few could muster. Hunter has withstood Cancer and survived more obstacles, it's beyond imagination. His suffering will soon pass. May you and Zen, somehow, find love within your hearts that lasts a lifetime, so that your suffering may pass as well.

Leslie said...

I'm so sorry. I don't even have the words to tell you how sorry I am.

Daphne said...

Hunter is a legend.

Anonymous said...

Please know that you are not alone in your fight, in your pain and in your dreams to keep him alive and with you. I vow to you that I will continue to fight for you, for Hunter and for all children. May God ease Hunters suffering and allow you much time to enjoy living. You are a part of me, you are my hero.

Carlina said...

No Words, only tears. You are not alone. Much Love which all of us could try to drown you in but will surely never be enough to replace that of Hunter's! I am so very sorry.

Tamara said...

Lenore - I have been following your story for the past year and I'm so sorry for what you are going through. Over the past year I've been inspired by Hunter and your family's strength. I can't imagine the feeling of helplessness you are going through at this time. I will continue to keep your family in my prayers, and hope that your time will be lengthened with your angel.

God Bless!

Kristina said...

I don't know you at all. I found your blog through a Beckers Blog post and I have been following you ever since. My heart is just broken for you all. You will be on my heart and mind. Wishing you whatever peace you can find.

Unknown said...

Lenore-you don't know me, but I've been reading your blog and keeping Hunter and your family in my thoughts often. I lost my son about 2 years ago under different circumstances. From one heartbroken mommy to another, I want to express how sorry I am. I hope that all of your photographs and memories will one day be a comfort for you even though they will cause pain in the short term. Again, I am so sorry!

Unknown said...

i'm not sure if you remember me...i was one of the new RN's at CHLA around spring 2008 that proudly cared for hunter. what a strong, courageous little fighter he is! he always brought a smile to my face every day i came to the unit and it was such an honor to be a part of his days at CHLA. i have since moved back east and have been following his story and looking at the photos and remembering his smile and his laugh, owning the halls of the unit with his helmet on, giggling like crazy from the "happy juice", dancing on the windowsill, bopping his head whenever you sang to him :)

he truly touched my heart and i am unbelievably heartbroken to read this news today. as hunters parents, i admire you for your own strength and courage throughout the years and especially now. hunter is blessed to have you two for his mommy and daddy and i feel blessed to have known hunter AND you two. hunter has taught me to live and love each day like it's your last. and that is something i will take with me forever.

Anonymous said...

I am so very, very sorry. Lifting you up in prayer.

Anonymous said...

It was our privilege to meet all of you today. Thank you for giving us access to this blog-- your words are so very moving.

We are honored to walk this journey with you and support you in whatever way we can.

Jamie & Deva

Unknown said...

It is so hard to "comment" on what you are have gone through. You are an inspiration to so many and Hunters fight has changed lives. His mark has been left on this earth and the angels will rejoice to be in his presence.

Jackie said...

Lenore, It's Jackie Collot, Juliens mom. I have been thinking of you every single moment. Last night, I felt as if we were one. I was sleeping with Julien and several times during the night I looked at him and was seeing Hunter in him. I actually had to shake my head and look for a nose hose. These children are connected, we are all connected and I truly believe that cosmic energy will help him and help you. If you have the opportunity, visit or have a "healer" visit Hunter. We did this the last time Julien was "on the edge" you will know in your heart what is right for you. Don't ever second guess yourself, you are an amazing mother, and Zen an amazing father. Love and support for you always- please let me know if there is anything I can do for you.

tara said...

Tears. All i have is tears. You are all in my prayers every single night. Hunter is an amazing child, a warrior and a fighter, a legend. Much love, Tara

Megan said...

I am so sorry you are having to go through this... I can't even imagine... I don't know you, but I can tell just from reading your blog that you are wonderful, amazing parents, and Hunter is lucky to have you guys, too. Please know that Hunter IS a legend, and his legacy will be remembered. Your story has definitely put things in perspective for me... I will be keeping you and Hunter in my thoughts!!!

Unknown said...

Dear Hunter and Hunter's Mom & Dad,

I am on the Team in Training team that is lucky enough to have your handsome little guy as one of our Honored Teammates. We are training and running and fundraising for you and think of you often. I know it isn't much but please know your family is in our hearts.


robin said...

My name is Robin and I am currently on the triathlon team with Team in Training. I have been praying and keeping Hunter in my heart since I first joined and read your blog. I am so, so, sorry that this is happening. I cannot even begin to imagine what you are going through. Hunter is an amazing, beautiful, brave, strong boy and every mile of my training and the event will be dedicated to him, and to your family.


Anonymous said...

I've written and erased my words on here countless times, failing to find words powerful enough to chip away at your grief. I find myself at a loss for words..

All I can think to say is I want it all to stop. I want Hunter's cancer to disappear, be it via magic or divine intervention, just GO AWAY. I want his physical and your emotional pain to come to an end with a positive outcome. I want all sense of normalcy to return to your lives..

You have an amazing, beautiful little boy who's stronger than most adults I know. His pictures make me smile and cry at the same time. Thank you for sharing your journey. I will continue to pray for your family.

Talon said...

I'm sorry. I hate cancer with every fiber of my being.

It will be thirteen years this May 19th that I lost my precious Rhys,(not to cancer, but to HLHS) and the pain never goes away. It never gets less, and I will tell you right now, you won't want it to. You'll fear that one day it won't hurt so much to miss him. You'll learn tools that will help you deal with the pain, but the pain will be as sharp one year, five years, fifteen years...the former director of the cemetary where Rhys is buried lost a son 38 years before I knew her and during one of our frequent conversations, she just dissolved into tears out of the blue. It will always be there. It's love.

It's not fair. It sucks and it's horrible and it is nothing any parent should ever be expected to have happen.

But he will be with you, always. And I am so happy for you that you have him now, that you have this time. I will go so far to say (and I'm sorry, I know you won't appreciate this) that I'm jealous. I didn't get this time. After 13 years you'd think that stupid jealousy would go away but it doesn't.

Love Hunter and love each other every moment of every day. It's all you can do and perhaps not so ironically, it is the very best thing to do. Live the rest of his life with no regrets.

And one day it will become a precious memory.

I believe it.

Anonymous said...

Enjoy his life for what he is. Don't let a disease define who Hunter is, b/c he's NOT that disease. He is your gift from above, a vehicle for you both to learn about life and how fragile it is and to learn how important it is to live in the "Now" moment.

See him like God sees him, whole and perfect, because he's nothing less than that. My prayers are with you all.

kensingtonlawyer said...

Dear Lenore and Zen,

I am so desperately sorry to read of this news. I can truly say I know how you feel, as we lost our daughter Liddy, age 5, to AML just over 1 year ago. If there is anything I have learned from our journey with AML, it is that life is precious and we must treasure every moment. I know you have done that with Hunter, and as you have said, the three of you have squeezed every second out of life. God Bless you all...for the journey you have traveled, and for the one that lies ahead.

Monica Miyashita
Mom to ^Liddy^

Anonymous said...

I am one of the lucky ones. I was diagnosed with Hodgkin's Disease at age 13...I'm now 25 and every day realizing more and more just how lucky I am. I now have a son who is 4 months old, and I can only imagine the suffering and pain and injustice you are feeling. The love you have for your child...I would take cancer again in a heartbeat if it meant keeping my son healthy. I just want to tell you Hunter is in my thoughts and I will pray for him and your family. Children are such a blessing and even a short time in their presence is a miracle. "I would rather have had one touch than a lifetime without."