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, June 16, 2009

The new beginning......

Day 0 - TRANSPLANT DAY

Hunter's guardian angel blessing and protecting him. That's his "New Life" gleaming behind her.



So far..........the transplant has been a huge success. Hunter's body has been tolerating everything that's been thrown it's way, and he seems to be feeling really, reeeaaaallly great. He's got the cells in him now of a newborn.......so I guess, in a sense - yesterday, he was born again. The transplant itself was very quick and only ran over the course of about 30 minutes. We have seen some Bone Marrow Transplants online and have been told that the actual transplant is pretty anti-climatic......and that it was, so I feel as if we weren't too disappointed. But I did feel as if it would take a little bit longer??!! Hunter actually slept through the whole thing. Geez!

They shot him up with steroids before they began to prevent any kind of reaction. His nurse checked his vitals every 5 minutes for the first 15 minutes and then pretty much stayed for the rest of the time to make sure it all ran smoothly. It was very similar to a blood transfusion. They just hung the bag of cells from his IV poll and dripped them into his Broviac, which is his central line in his chest. Easy as pie.

The cells arrived a few days before at the hospital, frozen and stored in a preservative by the name of DMSO, (aka stiiiiinky, nasty, rotten oyster, smells like crap preservative). They freeze them in this simply because it does not crystalize like ice - so that prevents any kind of piercing of the bag or damage to the cells. That's a good thing. However, the room does quickly come to smell like rotten oysters and so did Hunter. We've been told that it only lasts a couple of days.

So now Hunter's blood type changes from A+ to O+ (O+ was the cord blood's - blood type), and his vaccinations that he has already had are no longer. Those vacated his body with his old marrow. He won't be able to get any new vaccinations for one year. And even then, there are only a few that his body will be able to start with. His food restrictions are pretty serious and he's limited to mostly things that are canned or cooked very thoroughly to prevent any bacteria or fungus from getting into his system. He is not supposed to eat anything from a bulk food section, (which we never really did anyway), no deli sliced meats or cheeses, (only things pre-packed), no fresh fruits or vegetables, (he can eat cooked veggies.......but they have to be cooked really, really well), no eating out at restaurants, no raw nuts, no tofu, no soft, bleu veined cheeses, no herbs, no sprouts, no poultry, no fish........on and on and on. We've also read that it's not good to light candles due to the fumes and toxins released in the air. No playing with other kids, no exposure to construction zones or areas with lots of dust. And more, on and on and on. So yes......he becomes the boy in the bubble.......who can eat nothing but canned soup. But hey.......who cares!!!!! He made it to transplant and so far he is alive and well!!

Hunter woke up about 2 hours after the transplant was complete and we were warned that he might wake up aggressive and grumpy and a little irritated due to the steroids. But........he didn't. He did demand his YouTube......Hunter's latest addiction, lots of cartoons and shorts, over and over and over. But after about 20 minutes - he was up and climbing around and dancing and singing. He was looking and feeling like a brand new baby!

So even though the transplant itself was anti-climatic...........the actual transfer of cells into Hunter's body will change his life forever.  Much like all of you have changed our lives forever. 

Prayer circles were formed, candles were lit, angels were summoned and chants were heard all around the world.............children were hugged tighter, people were loved longer, life was appreciated fuller............Hunter has and will continue to teach us all so much.  Love what you have, hold what you love and never, never, ever.........let someone tell you it can't be done.  Hunter continues to break all the rules and he will shine on like the warrior that he is and we will let him know throughout his entire life that he is an amazing human being and has brought such love and peace and joy and hope to so many.  And he doesn't even know it.

Me and Bean right before the Transplant.



This is his IV pole currently. We've been told that MANY things will be added to it in the next couple of weeks. It's already on overload if you ask me!



Hunter's new cells slowly dripping into his body.



Crashed out and snuggled the entire time.



Almost finished. Empty bag, just getting those last few cells. If you look closely you'll see the NMDP, (National Marrow Donor Program), listed on his bag. Thank you again for having, preserving and delivering Hunter's new life.



Hunter doing his Transplant Happy Dance, laying down!



Hunter wearing his iPhone hat. For whatever reason...........that cracks him up.



Our first family pic with the new Iron Hunter.



VIDEO OF HIS TRANSPLANT COMING SOON!

6 comments:

Matt said...

OH MY LORD! To see the three of you SMILING after this Odyssey of struggle is enough to make a grown Man cry, and it did! IRON HUNTER, you rocked that transplant, we're beyond happy for all of you. You deserve nothing but GOOD news from here on out.

Lindsey said...

GO Iron Hunter!
That family photo made me tear up. You guys are awesome and I know that God has great things in store for all of you!

{ Lindsey }

Kimberly said...

I can't stop smiling right now. Hunter seems to be amazing everyone there with his resilience and strength. Hunter, as soon as you get healthy enough, you must spread the word and show the world your strength and perseverance. To be such a young child going through something many adults have a hard time handling says so much about you and your parents and your spirit. Bless you, your mommy and daddy and your guardian angels. Congratulations Iron Hunter.

Sheri said...

The three of you are beaming with joy & we couldnt be any happier to see such light in your eyes again. The power or prayer is a beautiful thing. I just know Hunter is going to grow up to be the most amazing man. What a warrior is right! WAHOO!!!!!!! Big Hugs all around.

MJ said...

Lenore,

I am not always the best with words, so bear with me. I will try and make this short.

What you said in the last paragraph of Hunters blog could not be true. But along with the inspiration that Hunter most assuredly is to everyone that has been blessed enough to be touched by him, there is also you and Zen. The love and dedication to your son, the perseverance in the face of the beast that is AML is nothing short of inspirational to those of us that have had the opportunity to share some small part of your journey through your writings and photos. I have seen every spectrum of parenting at the hospital, and I can honestly say that Hunter is blessed, and I know much of his strength comes from the love given to him by you and Zen.

I have only twice shed tears while doing an exam in my time at DCH; one of those times was when the three of you came to my room for Hunters chest x-ray. I don’t know if you realize the impact you have made on the people around you, but I would like to say thank you for having the strength to share your story with us. I feel fortunate to have met you, and think about the three of you every day.

Peace & Love,
MJ

Liz said...

Hi! I found your blog through Circle of Moms on facebook. I was just checking in to see if you had anymore updates since his transplant. I totally understand that you have your hands full these days, just wanted to make sure things were still going well. My son has ALL and will be 3 in August, so my heart goes out to you and breaks with all you have been through. We have been blessed to not face all that you have been to this point so far, especially with the transplant. But there is something about having a sick child that makes you feel for other parents that much more in an understanding that you can only have if you have been though it yourself.
God Bless You!
Liz