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.

Tuesday, March 16, 2010

Rainy Days of Sunshine

Hunter’s death is killing me.

The extremely painful and heartfelt emotions that have overtaken my body are beyond human tolerance. These last 3 weeks have been pretty unbearable and quite surreal and I’m so, so devastated, and just can’t seem to find any peace yet in our tragic ending. I hate it. I hate that he’s gone. I hate that I can’t touch his soft skin and smother him with love and sunshine all day long. I have all this love that used to go to Hunter and now it’s just building up in my body causing an immeasurable amount of pain because he’s not here to give it to…………he’s so far away from me. I feel like he’s out there all alone………wondering where mom and dad are. Wondering why we are not by is side, right next to him – where we’ve always been. Wondering why he’s been taken from us, when he did nothing wrong, in fact he did everything right. We’re supposed to be together, living this life out the way we had all imagined. We were supposed to be rewarded for all of our hard work and dedication. That’s how it works. You give it your all, play from your heart, fight with everything you’ve got…….and you accomplish great things. Our victory has been brutally taken from us and we are laying here defeated with our mouths agape……….wondering why this happened to us. Wondering why this happened to Hunter. Life used to be a little easier. And granted we were dealt a tough hand………but we were making it. We had Hunter, we had him with us, we were keeping him alive……….and that’s truly ALL that mattered. That’s all we cared about. Life, all of a sudden, has become overwhelmingly sad and extremely more difficult to live.

Hunter’s love was truly magnificent. I crave it every morning I open my eyes. I lay in our bed for what seems like hours just hoping and wishing he was still there laying next to us. We absolutely adored him. He was a true delight in every sense of the word and his vibrant energy is so terribly missed. Our house is sad and lonely and his presence, strangely enough, is felt everywhere…….yet he’s no where to be found. He’s unreachable. He’s only been gone three weeks and I feel as if it’s been a lifetime since I’ve held him and giggled with him and cuddled with him, sharing sweet and precious moments; moments that have now been stopped dead in their tracks.

This is one of my favorite videos of Hunter. He was so full of life this day. It was my birthday and he was just so tickled to help me blow out the candles. We did it over and over and over. I can't watch this video yet without getting extremely sad and angry for what we've lost. He's our sweet baby love and deserved a much better life than the one he was given.

More loving memories

Below are a couple of shots of Hunter's last amazing day. We were certain that he was healing because he was just so happy and active and enjoyed his day at the beach so very much. He struck a fever the day we got home and we were admitted into the hospital and 2 days later.......we were told that his cancer had returned for the fourth and final time. Complete shock and devastation. Just didn't seem possible.

I feel as if my whole being right now is made up of glass and at any moment, with the right dreadful combination of thoughts, I could shatter into a million pieces and I won’t have the strength or desire to put myself back together. I won’t even know where all the pieces go since my heart and mind are so tangled and torn up inside. I feel as if I am constantly running from the memories of Hunter’s last three days alive because they are so painful to remember as a mother and every time I think of them – a terrible, terrible heartache and sadness take over my whole body and I start to drown in my deepest, darkest fears. Fears that are now my reality. Because of this, I can’t be left alone too long with my own thoughts. They take me over and get a pretty powerful grasp on me………one that only Zen has been able to pull me out of.

I remember thinking and feeling and hoping that truly someday – everything was going to be alright. Now I know for sure that all of our days ahead will never truly be “alright”. We will never be “completely” happy knowing what was taken from us, knowing what we are missing out on……….knowing what Hunter went through just to be granted the chance to live. And then death comes along and just rips his life right out of our hands as if all of our efforts were for nothing.

I just can’t believe that this in now the life we’ve been left to live.

This video rips my heart out. It's Hunter's last video, Hunter's last words and Hunter's last wiggle. This is the day he died. When we woke that morning, he was basically suffocating and was unable to breath on his own. The leukemia had invaded his lungs and was taking over his entire body. We immediately hooked him up to his oxygen mask and pleaded for him to hang on. The doctors told us, based on his breathing pattern and the fact that he wasn't responding to anything, that his last breaths could possibly be sooner than later. We talked to him for hours as we held him close and tight in our arms, begging for him not to go, even though we knew it was clearly time. All of a sudden he woke and gave us his one last wiggle and one last smile. We got to hear his sweet voice say mom and dad one last time, he showed us his cars, asked for some juice and his cozy blanket.............and then he went to sleep.......and never woke up.


Hunter’s cancer actually showed it’s face in my dream the other night. It’s the first time it’s made an appearance and the first time I was actually able to recognize it. I’ve seen shadows of it before……but never it’s face. I was terrified. It was creeping around a crowded room……unexpected and uninvited. Possibly looking for me to wickedly laugh in my face, possibly looking for me to just let me know we’ve lost and to boast it’s victory. Possibly looking for me to let me know that once it gets it’s hands on something……….it’s not letting go until it gets it. My dreams are usually very vivid and real and I always wake up remembering them. I use to think that was a good thing when my dreams used to be joyful. However, I could have done without that one and the many others that now seem to haunt my nights. In my dreams now, Hunter is always dead or passing and I am unable do anything except sit there and hopelessly and helplessly watch it…………...not strong enough to kill what’s attacking him. Not powerful enough to take it down to it’s knees. Not ferocious enough to let it know that what’s mine is mine and I will guard it with my life. But unfortunately, in this terrible dream, my hands went numb, my legs went limp and I was unable to move……….paralyzed with fear, knowing it’s going to take and take and take from me what is not rightfully his.

I am looking forward to when dreams like this stop. It’s tough enough to deal with what I have to deal with when my eyes are open. Please let me get some sort of peaceful rest when my eyes are shut. I’m exhausted and feel as if I haven’t slept for the last 2 ½ years. I want the nightmares to go away. I want to see Hunter in my dreams alive and well………happy, smiling, giggling………enjoying the life he was supposed to live. That’s all I have left now……are my dreams.

The pendant I now wear every day I wake. It's got a little piece of Hunter's soul and an over abundance of love from the bond the 3 of us created. I wear it close to my heart
and will forever keep him with me.

Zen and I are in constant pain and some days just seem like a thick and murky fog. Even when the sun is shining……it feels like it’s raining. And on days when it seems like we are not crying on the outside……we are crying on the inside. It’s a mental battle like one we’ve never fought. Some days we feel like we are winning……..other days we are clearly losing.

So here we are again – having to rise above yet another challenge that’s basically been harshly thrown in our face…….unwanted, undeserving……and now having to combat it with one less warrior. It’s amazing how deep we have to continue to dig just to survive in this life. It looks as if our true colors are going to have to shine again, and Zen and I will, once again, see what we are made of.

I guess this is where Hunter will deliver us strength and courage and determination. I guess this is where we look adversity in the face with a smile and let it know we won’t go down easy, just as Hunter did. I guess this is where we do our best to survive……..the only way we know how. ….with love and compassion and an understanding that life has dealt us a blow beyond belief…….a brutal and horrific blow which will beat us down and last our entire life. We’ve now been burdened with the sadness of grief. We’ve now been burdened with the sadness of losing our only child. We’ve now been burdened with a lost love………that can never ever, ever be replaced or forgotten. And now we have to survive. We not only have to find a way to live without Hunter, but we have to find a way to live WITH Hunter. We have to find a way to live with his memories and his laughter and the joy he brought us. We have to find a way to cherish his being in a very positive and productive manner, even though what happened to him is so terribly tragic and will deliver a forever sadness that we’ll never be able to shake. We have to lock up those memories of his last 3 days and not ignore them, but only access them when we feel the strength and power to do so. We can’t allow those 3 days to consume all of our precious memories. Amazing memories that we'll hold close in our hearts and minds every waking moment.

A wonderful photo montage created by a dear friend.

Zen and I are closer now then we’ve ever been. He’s truly my best and most cherished friend. Our love has only gotten deeper and now exists on so many more levels. The intensity I feel when he embraces me is sometimes overpowering. I truly feel Hunter between us and it’s when I feel his presence the strongest. His brilliant smile and effervescent energy lit up our life and that’s what we are allowing to carry us through our darkest days. We created Hunter and we are now living this life walking the same path…..without him, with him, loving him, embracing him, cherishing him and remembering him for the wondrous soul he was.

We will continue to carry on Hunter’s legacy. We will continue to place his footprints on the hearts of all who hear about him. We will continue to change the lives of many more people walking this earth who weren’t quite sure what life and love are all about. He’s changed the lives of many. He’s made people better parents. He’s opened up the doors of love to so many children. He’s made people appreciate and embrace being alive.

We are now 5 months pregnant with our next son and are torn between anxiously awaiting his arrival and making sure enough time passes for us to truly have laid Hunter to rest. We’ll think of him every day for the rest of our existence. It would be impossible not to. He’s our inspiration, he’s our love, he’s our brightest star that is now shining on us every moment he’s in our thoughts. Our weakness and vulnerability will soon turn into strength. Our sadness and heartache will soon turn into courage and our pain and suffering will soon turn into the utmost determination to continue to live our life to the fullest, realizing how truly blessed we were to have Hunter in our life. He’s taught us and several others how to love stronger, love deeper and love with every ounce of your soul. It delivers an unimaginable beauty that will enhance us for the rest of our lives.

One of my favorite Dr. Seuss quotes that was posted recently,

”Don’t be sad it’s over, be happy that it happened”.

A beautiful video tribute created by another amazing friend


Kelly said...

Your words are so powerful and moving. I'm a Mom and I can't even begin to imagine your pain. Your words express so much. I am a fairly new reader of your blog, and I was devastated by your loss. I think of you often. I worry about how you are doing. But I was overjoyed to read that you are expecting your second child. The love you and Zen have is amazing and real and you are wonderful parents and I am happy that another child will be blessed with you as his parents. I wish I had the right words, but this is one of those situations where all I have is just to let you know that I am thinking of you and praying for you.

Morgan D said...

Dear Lenore, Zen and Hunter,

Although I don’t know you I feel compelled to comment on your post, to share with you that you son’s presence continues to leave me breathless. It’s your words, your pictures, your videos and your memories (both good and bad) that I can’t get enough of. It’s such a special love and I find myself reading your posts over and over again.

Hunter is one of the lucky ones. Some people search a lifetime to find the love he felt in his short time on this earth. You did good, and I can only hope that when I have a child, I can be half the mother you are.

Congratulations on the newest addition. That’s one lucky boy, and I hope with time he finds a way to replace a little bit of your soul thats been lost along the way.

Take care of each other and lots of love,

Anonymous said...

I am so sorry for your loss and your pain. It seems like too much for anyone to be reasonably expected to bear. Yet, Hunter continues to touch many lives with his grace. I believe that the beauty of his presence will always be felt, like a ripple that goes out and out. What you have had to endure as a family seems beyond all sense, but I think that in allowing it to infuse you with even greater love and appreciation for what you have all shared, you are wresting some meaning and beauty out of it.

You will remain in my thoughts and prayers. Like Kelly, I am overjoyed too to learn that you will have the opportunity soon to love and be loved by your second child, although I recognize that this must be a complex emotional journey for you. I hope that you will feel able to keep updating here and letting us know how you are getting on. There is a world full of people you don't know who are loving you and holding you in their thoughts.

~ Fiona

Kayla said...

Leonore and Zen,

I have posted before and I have checked everyday since Hunter's passing just to check in on you guys. I prayed before his passing and now I pray that your healing will come soon. I don't know you and will never meet you but your son's story brings me to tears. NOt just the little tears you clean up with a kleenex and then proceed to move on, but the big tears that need more then one kleenex and stay with you all day. Hunter was so beautiful and his soul so pure. You can't not look at this and think of what a shitty situation this was.

The news of your new addition is so wonderful but I am sure that it must be hard for you as well.

I, like Kelly, wish I had the right words BUT all I can tell you is that I will continue to pray and I am sending you huge hugs.


Megan said...

I am so sorry for your loss. Your story has touched me deeply. I will keep you in my prayers. Always Remember That God Is With You.

Kayla said...

I wanted to say WHEN YOU ARE READY you might want to check out this blogger -

Her little girl passed away a year ago and she very openly talks about the emotional rollercoaster. She also just recently had a little girl.

I know nothing will take the pain away but it might fell "ok" to hear another similar story.

AND please feel free to tell me to fly a kite if I overstepped the internet bounderies.


Anonymous said...

I hardly have words, I can't even imagine the pain and sorrow that moves through you on a daily basis. I am so truly sorry for your loss. I am a friend of Jessica's and saw your story as I was posting on her wall. You are both amazing parents. Your son will be with you always, he truly was a remarkable child. I looked at my son as I was reading this and broke down, how truly unfair. Congratulations on the new baby, I hope you can find some peace. You both are truly amazing. God Bless.

Anonymous said...

I started reading your blog right before you lost your Hunter and have been checking for a new post to see how you guys were doing. What you all went through is just not right; no parent or chld should have to go through that type of pain. Reading about your little boy has made me hug mine more tightly and more often every day.

I hope that time softens the edges on your bad memories and that the good memories don't as quickly bring tears. Your Hunter knew an amazing amount of love in a short time and I know that your new little one will feel that same love. Congratulations on your baby - I feel certain that his big brother Hunter will be keeping watch over him.

Please keep us updated as you can. Sending lots of good thoughts your way...


Annie said...

I have never posted a comment. I, like many of your readers, have been following your blog and checking in almost daily to see how you are surviving. I am a former NICU nurse and served as a grief counselor to parents who lost a baby. I had to leave my job after my son was born because I just became a basket case. I cried all the time, couldn't stop thinking about the horrors I saw every day, and just couldn't understand why a parent should have to bury a child. I have cried my eyes out reading about Hunter and seeing his broken little body and huge smile. All I can say is that I am a stranger who cares about your family. I pray for you all daily. I didn't know you were expecting another child until I read this post. I know you must have mixed emotions. Such a happy time in the midst of such a sad time. You just have to allow yourselves to feel what you feel. No guilt for feeling happy and no guilt for feeling sad. Don't let anyone tell you how you should act or feel. There is no wrong way to grieve. Bless all of you. Hunter has touched my heart more than you will ever know.

Jacquie said...

I'm a new reader as well. I can feel your emotions in your writing as if they were my own.

Thank you for sharing videos of your sweet Hunter. What a sweetie.

I don't have any other words that would make any difference right now. Just know that your story has touched my and many others hearts.


Pat Castillo said...

Dear Lenore and Todd,

Jessica and Cody ate w/my family and I this past Saturday and I asked how you both were doing. I've prayed and thought of you often. Jessica had mentioned you were pregnant and I have been praying for a safe pregnancy and a healthy baby for you.

There are no words that seem to help at a time of such loss. I lost an aunt last year to cancer and only had 6 weeks to brace myself for it--no words helped me cope then, either.

There's a Chinese proverb that says, "the soul is healed by being w/children". NO ONE will ever replace Hunter...but I hope and pray that you will find some renewed joy w/the arrival of a new baby. Hunter would've wanted you both to celebrate big time the newest addition to the family...

You've already proven that you are both amazing parents...and you're right--there's a lot of love that you both still have to give...and one day--you'll be able to shower Hunter again w/that love.

My prayers continue for you both. And I hope to someday have the privilege of meeting you...

Matt Nolan said...

I just watched Hunters last video. Zen described the last time he woke up, and to see it, my heart is broken for you both, and for sweet dear baby Hunter, into a million pieces. Its not fair. Its not fair.

tara said...

Lenore you are an amazing writer, to be able to put your feeling down on paper like this for all of us to cuts my heart into pieces, and watching his last moments, makes me cherish every minute I have with my son. I can't imagine your pain, this unfair dealing of cards you have been kills me, and I am not there living it day to day. I pray and think about you three often, and I hope this new baby, brings a new joy to your lives. See you Saturday, all my love, Tara

Katie said...

I am here in my office, tears in my eyes, feeling a lump in my throat that I can't seem to swallow. My heart aches for you... your child didn't deserve to ever suffer or leave this earth... and you should have never lost him...

I am so happy you are expecting another little boy - I can only imagine it is hard every day to sort through those emotions of joy for having a new baby and sadness that you have lost your first baby... Just know that so many of us pray for you and for strength for you.

Thank you again for sharing Hunter with us...