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.