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, July 19, 2009

Living with FEAR

(Day 36 Post Transplant)

We snuck Hunter out at 11pm when all the visitors were gone and we could get some fresh air. It was the first time he had been outside in 97 days.





So I am not going to lie.

Zen and I are terrified.

As tough as we come across and as positive as we seem...........we are constantly having to deal with the fact that Hunter's Leukemia might return, (since it has now invaded his body 3 times).

I know we are supposed to think and deal with "one day at a time", and I know we can only enjoy today because we really have no idea what tomorrow is going to bring. BUT, we look at Hunter and treasure his sweet face and his wonderful being so much, that we can't help but try to be prepared for what terrible beast might be lurking around the corner. Not to mention the docs have basically said that no matter what and all that we've been through..........there's a 90% chance that his cancer is coming back.

Hunter truly is doing fantastic. He does have a serious rash all over his body.......but it's not necessarily considered a bad thing, yet. It might be Graft vs. Host or it could be something viral. If it is Graft vs. Host........that's a good thing as long as it stays within the boundaries of being able to be controlled. If it's viral.....not as good, but apparently treatable.

This is sooooooooooo by far the life I would NOT have chosen to live. It's truly like constantly living in fear. It's like having something grab a hold of you and dictate your days and your mental being and you have to fight like hell to "stay in the moment" and not let it get the best of you. It's the hardest life I could have ever imagined. It's the most difficult frame of mind I've ever had to deal with. And granted...........Zen and I are both very strong individuals.............but, for god's sake.........I think we are starting to realize our limits. Our hearts can only be broken so many times.

On top of all this pressure of wanting to keep Hunter alive for as long as possible.......Zen and I were actually 3 months pregnant. Sadly enough......we lost the pregnancy this weekend and are once again - truly devastated. I think, right now, we are at a loss for words and just have NO IDEA why all of this is happening to us. We now fully realize that there are NEVER any guarantees in life and you just have to pick yourself up and just keep on going. Zen's mom kindly said as she was hugging me that life is not going to beat us and it's not going to bring us down. We can...and we will.....beat it - we just have to keep looking forward and appreciate what we DO have. We have Hunter, he is alive and doing exceptionally well and Zen and I have each other. Which is honestly two of the best things we've got - but I have to tell ya..............we are bummin' and we just want to go HOME and enjoy our lives and live a normal life like everyone else does. I think it's time. And I think we are ready.

We are tired of being sad........we are tired of being angry.....we are emotionally, physically, and mentally exhausted and we are tired of living this particular life. It's now been almost two years of dealing with Hunter's illness and we are finally seeing the light at the end of the tunnel......and I can honestly say that we are running like mad trying to get there as soon as possible.

Life can be quite questionable and wonderful and cruel. Friendships have shown to be true and false and ever so appreciated. True and honest love has been proven to be strength and light and comfort and all encompassing safety. I've never had so much to deal with all at one time. I've never called upon so many friends and strangers for the energy and power to keep on going.......and I've never realized so much, until now, that life is something to be embraced and fulfilled and treasured for as long as you've been given the honor to do so.

We will deal with what we have to deal with - we will continue to support each other for as long as one another is called upon and we will fight through and learn from these life lessons and hopefully come out stronger and tougher and brighter than the most powerful star. I am so, so sad and I feel as if my spirit is broken............but it heals and gets bandaged up every time I look at Hunter's beautiful face and with every hug and kiss that Zen lays upon my skin.......I couldn't ask for much more.

Zen made the comment and reminded me that "Happiness is a state of mind"..................you bet it is.

***************************

I wrote this post two days ago and just came back to it to add some photographs. Just in two shorts days................we were on our way to go home - but now Hunter is spiking 104 degree fevers and he's just not himself again. We were getting so used to seeing him spunk around the room and wanting to get out of bed and do his thing...........but today, there was a substantial difference in his behavior. He's not talking too much, he's not taking his meds again and is grumpy and hot and fed up. Not the Hunter we are used to. They are doing an emergency Bone Marrow check tomorrow to make sure that his marrow is still clean, (which by the way - on Friday we were told that it was. Not to mention we were also told that 100% of his marrow was the donors marrow), so that's FANTASTIC. However, the Leukemia can still return......and it moves in fast.

Hunter getting yet another Cat Scan to check on his liver. Apparently it was the Voriconazole medication that seems to have been the culprit of his liver acting up. The doctors have since switched his anti-fungal and now he's doing much better.



This is Hunter's morning dose of meds - 8 all together. He then gets three more in the afternoon and then the same morning dose at nighttime. He's toooootally over it.



This is his horrible skin rash that attacked his whole body. Could still be viral, but leaning more towards the Graft vs. Host now. We'll see if his fevers subside and the increase in steroids makes it any better.



This is Hunter's hospital room door................where we've been living inside now for about 100 days. Thank goodness for pictures.......it reminds us which room is ours.......hee hee.



Hunter and dad on a walk around the halls. Good nighttime fun.



What we get ourselves into once we get back in the room.





Watching YouTube..........up close and personal.

4 comments:

SandraD said...

Lenore, I don't have any great words of wisdom but I wanted you to know that I've been reading your blog for quite some time and even though we've never met I've been thinking of you, Zen and Hunter.

This post touched me in a way that compelled me to write, not because I've ever experienced anything like you are going through. I just wanted you to know that I care and I'm sure there are alot of others like me out there silently following your story.

I think people choose to be silent since they aren't sure what they can do, when showing support is all they have to offer. I've decided to stop being silent.

I'm sending you my love, support and thinking of you often. Sandra in Salt Lake City, Utah

Raina said...

I'm so sorry to hear about the miscarriage. It is a unique kind of loss. We had one too, back in March so I understand the disappointment and sadness. But itmust be so much harder still on top of everything else you have been going through.

In my whole life, I think i may have experienced 1/100th of the fear, sadness, and anxiety for maybe 1/1000th of the amount of time that you, Zen, and Hunter have experienced battling this disease. Those moments of my life were awful and the thought of magnifying them to such an all-encompassing daily presence breaks my heart. It is just not fair.

It is one thing to put on a brave face in such a helpless situation, but another altogether to write so openly and honestly about it. So I want to say thanks for keeping up with your story - the better times and the worse alike. You guys are an amazing family and both Jason and I (along with our extended family!) are hoping and praying for Hunter to be cured.

Love and prayers,
Raina and Jason

MKPatrick said...

Dear Lenore, Zen & Hunter,
The heaviness with which you write is palpable. I know that a few words here and there cannot make a dent in your fear and sadness.
Still, we are thinking about you always...sending you love & light...praying for a "normal" life for you and your beautiful family.
We're so sorry about your miscarriage. Such a painful experience. My heart is with you.
Stay strong. We'll be at the fundraiser in Buffalo on Friday, pushing all three of you toward the finish line...HOME & HEALTHY!
Always love & light,
Mary Kay, Matthew, Luke & Amelia

Anonymous said...

Lenore,

Am still praying for you and think of you often. In a "sick" way, I think you are living the life most of us dream to live: full of love, honesty, and compassion. Cancer brings out your innermost being: good or bad. You and Zen have proven TIME AND TIME again that your Spirits are amazing....touching so many people and DARING us all to live as open, brave, and honest as you are. I think everything you write touches so many people and challenges us to look at ourselves....are we as loving to our children and spouses? are we as brave? are we as able to make the best of our situations? are we strong enough and have enough faith to march on? Most of us live in our little comfortable bubbles and don't "go there." Yet, I am not sure that that is truly living.....easier, yes. As life changing and inspiring as yours? Not even close. I don't know what your life's story will be, but know that your hearts are touching all of ours and that is a gift. Thank you for sharing.....Holler if you need anything.

Kelly O'Connor