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.

Wednesday, January 14, 2009

.....our hearts are broken



It's taken me a couple of days to get up the courage to write. I was hoping to never, ever have to type these words.

Hunter's cancer is back.

We checked into Doernbechers on Monday afternoon for his pneumonia hoping to be out of the hospital within a week. Hunter having a relapse was low on the list of concerns since he had just had a check-up on December 11th and came back all clear of any sort of relapse. But since the antibiotics did not seem to be doing the trick with the pneumonia, they decided to draw labs and check his cell counts for any kind of abnormal activity. When the blood test results came back, his cell activity was showing signs of something going on at the bone marrow level. It was then that a relapse was moved closer to the top of the list. It was still not confirmed until they put him under and did a Bone Marrow Aspirate. After research was done, they found that 45% of his bone marrow had been infected with Leukemia. It was invading his little body.......again.

In the last three days, Hunter has had blood drawn 15 times, has had his antibiotics switched 6 times, had one spinal tap and is getting another tomorrow, had two chest Xrays and 1 stomach Xray, had an echocardiogram, a Bone Marrow Aspirate and a Picc Line placed in his upper right arm. Wow. Rough couple of days and not going home any time soon.

While Hunter was having all of that done, Zen and I sat by his side in shock and devastation and cried and cried and cried. The tears wouldn't stop and the pain just kept getting deeper and deeper. I personally have felt sick to my stomach for the last 72 hours and my body has been on the verge of collapsing several times. My head is numb and my mind is not working too well and all I want to do is beat the shit out of something.

His precious, little, innocent body has been through so much and the thought of having to do that all over again is terrifying. Not only are we back to square one, but this next time around is going to be so much harder and so much more difficult on so many levels.

The bottom line is that Hunter is not going to be able to survive without a Bone Marrow Transplant.

He gets Chemo injected into his spine tomorrow morning and will start his first round of Chemo shortly after. The goal is to get him into remission to get his body ready for the transplant. The Bone Marrow Transplant is a risky procedure and still does not guarantee that his body will be cancer free. And we were told that his chances of survival are 56 percent.

Because of Hunter's genetic make-up, finding a donor is going to one of the hardest parts. They'll go on a worldwide search that consists of 11 million donors. If no match is found there, they will then move on to cord blood options. Tons of our family and friends have offered to be tested to see if they are a match. We'll know more details as to how to become a donor in the next few days. A great place to find out more information is up on www.marrow.org - full of good stuff and you can see what Hunter is up against.

He's a strong kid and I'm positive he is going to fight like hell. He's a true champ.

I personally need to wrap my head around what lies before us and charge on. Today was a little easier and I'm sure tomorrow will be even better. He's such an amazing child and the thought of him having to go through any more pain just absolutely kills me. I know we have to be strong and positive and trudge on......so I guess we will do just that.

Hunter when we were admitted on Monday.



Getting a routine Echocardiogram while watching "Cars".



Chest Xray in the room at 3am.



Hunter going through chest therapy to loosen up the fluid in his lungs and chest.



On the way to surgery.




Going into surgery after being sedated.




Hunter after surgery.



The long walk back to the room.



Apparently we'll be here at Doernbechers for the next 4-6 months. Several people have asked for the address with the floor and room number. The address is Doernbecher Children's Hospital, 3550 SW US Veterans Hospital Road, Portland, OR 97239. We are on the 10th floor, however, our room will change a time or two - so just put to the attention of Hunter Thawley, 10 South.

Thanks so much to everyone who has already called or written in showing their love and support. We need it now more than ever. We are frightened and unsure of what our future has in store for us, but Zen and I have rallied to pull it together for Hunter's sake. We are about to challenge a beast and we've got both arms swingin'.

Much, much love to EVERYONE.

9 comments:

fulseas mama said...

Lenore, Zen and Hunter,
I have been following your son's journey for approx the last year after my daughter Chelsea was dx 1/2008 at 8 months old with AML. I am so very sorry you have had to hear the words we all fear so much ---relapse. As I read your last entry tears filled my eyes. I will continue to keep your family in my thoughts and wish you all peace, strength and courage.

Also I realize this may seem odd since you don't really know me but I wanted to let you know our family lives in the Portland area so if we can help support you in any way while you are in the hospital for such a long stay please do not hesitate to ask. My e-mail address is erika.beyer@comcast.net.

Strength to you as you battle this beast...
Erika, proud mama of Fuller and Chelsea

Tara said...

Hi Lenore and Zen, I am friends with Erin Hirsch. I just read your post and it breaks my heart as well. I am so sorry and I know my words cannot make this any better for you three, but please know you are in my prayers and my thoughts. I cannot imagine what you are going through, But I know God has a plan for Hunter, and he will keep and protect him under his wing. I admire your courage and strength for Hunter's sake, being a mother myself, i understand that the fear and worry takes over and at times you cannot think straight. Plesae know how many people are praying for you and find some sort of comfort in their embrace.

I have a blog and was wondering you wouldn't mind if I shared Hutners story with my readers, and asked for them to keep him in their prayers as well. I know during times like these the more prayers the better, a stronger fight.

Sweet Blessings and hugs to all three of you~

Tara

Anonymous said...

Hi Lenore, Zen and Hunter... I was so sorry to hear of the news when Erin told me the other day... I have been saying so many prayers for you guys and will continue too..... you guys are very remarkable people and I will be "swinging" my arms with you guys too...- Much love, Sarah

Lenore said...

Thank you guys all so much for your warm thoughts and wishes and prayers. I keep them all in a big bucket and I shower Hunter with them every morning. I think 1/2 the world is sad on this day. He's got so many supporters and so much love........it would be impossible for him to not win this battle. We've got an army behind us and not one person is giving up hope.

Please feel free to share his story, I'm sure he'd be honored.

Forever grateful,

Lenore, Zen and Hunter

Meredith said...

We're sending you all every bit of good energy and strength we can possibly muster as you fight this fight.

You're in our thoughts and prayers.

Meredith
Here Comes The Guide

Sheri said...

Dear Lenore, Zen & strong little Hunter~
I read this post in tears & an ache in my heart. Being a new Mom of only a year & a half I can only try & imagine your pain but it is so painful I stop trying to imagine. I so admire your strength. I can't heal Hunter but I can pray my hardest for your family. I am going to forward your blog to all my friends & family. I am a believer in prayer & positive thoughts. May you be blessed today & forever.

Much Love,

Sheri

Shireen said...

Dear Zen and Lenore,

Please know that Eddie and I are thinking of you and Hunter during this difficult time. We send our love and support. Try to stay strong.

Love,
Shireen and Eddie

Anonymous said...

Dear Lenore, Zen, and Hunter,
We are so sorry to hear this devastating news. Our prayers are with you to find the strength to fight this battle.
Raina & Jason

Ira said...

Hi Lenore and Zen,
When I last saw you guys at my house in December I was so excited to tell Sophaleena how well Hunter was coming along. She was thrilled when I told her that you stopped by and bummed that she missed you by about five or ten minutes. After reading your latest posts tonight I feel like I just got hit with a train. I am devastated. I can't tell you how much we love you. Sophaleena and I will keep you in our thoughts at all times and are sending you very heavy positive vibrations. Hunter will pull through. Love and Hugs to all of you...