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.

Friday, May 8, 2009

The Beast within......



Hunter's life is on the line.

We received devastating news last friday at 5pm. The unusual cell activity that was going on in Hunter's blood is in fact the Leukemia. It has moved in at a rapid pace and has a hold on our little boy and is not letting go. We've had to look this beast in the face every day for the last 19 months and it's now come down to yet another battle. And the winner of this one gets Hunter's life. We are fighting like raging monsters and I almost feel as if I'm going insane. The emotions that have traveled through my body these last 7 days are ones that I've never experienced in my entire life. It's maddening, it's horrific, it's soooo, soooo sad..............and it's killing my heart.

He hasn't eaten for almost 8 days, his lower left portion of his lung has filled with fluid. His face and entire body are swollen and puffy and he won't move or play with his toys or even smile. He's had a fever of 105 for almost 5 days.

He's on a constant drip of morphine, he is back on oxygen, he's constantly getting transfused with red blood cells and platelets and they've also got him on TPN to feed him through his IV.

So basically, after the 2nd round of chemo, Hunter's Bone Marrow had about 3% Leukemia. We tried the experimental chemo, Clofarabine, for the 3rd round hoping to get rid of all traces of disease before transplant. Well......................not only did it NOT get rid of the cancer, but Zen often sadly jokes and claims that the Clofarabine acted as a cancer fertilizer. Hunter's Bone Marrow is now more than 95% Leukemic and the disease has taken over his body.

We were actually given the option of going home and making Hunter's last few days, weeks, months as comfortable as possible. They send you off with some oral chemo's, some morphine and a nice swift kick in the ass.

Needless to say.....................................................we didn't take that option.

We CAN'T take that option.

We won't accept that option.

This last week has been unbearable. Zen and I are barely making it - but we are somehow finding the last bit of hope to use to smile in Hunter's face when he's looking to us for comfort.

We've opted to try one more round of chemo knowing that the damage of the chemo treatment - could take Hunter's life. He now needs to make it through this round and then make it through another intense round of chemo, radiation and then the actual transplant. For those that know the chemo lingo, this last round consisted of 7 inter-lapping days of chemo - 1 day of AraC aka Cytarabine, 4 days of High Dose AraC aka High Dose Cytarabine, 4 days of Mitoxantrone and a final day of Gemtuzumab. Very intense and can be extremely toxic and harmful to his organs. We've taken special precautions and have ordered additional tests to keep Hunter's organs on track.

We'll do another Marrow Aspirate after this next round and if there is any more than 25% Leukemia in his Marrow..............it's time for another "life discussion". Even as it stands now............if we are lucky enough to make it to transplant........Hunter's chances for survival are 10 percent, which makes the chances of him relapsing after transplant - 90 percent.

We've consulted with another father of a little boy with AML by the name of Jaymun and he's been a huge help as far as assisting us in prolonging Hunter's life. His son Jaymun has also had an amazing battle with this disease and was also sent home to wait out the last few days of his life. Jaymun is still alive and is fighting this disease like a champ. His story can be followed on his site - Jaymun's Journey.

We are now going to try some herbs along with the traditional chemo's that are being recommended to us by the doctors. Everything gets cleared through the doctors and pharmacists............and we are desperately hoping it all makes a difference and brings Hunter's cancer down to a manageable level.

We are at a loss for words. We are angry and confused and devastated and are feeling cheated like never before. It's an incredibly, painful heartache that does not go away. I feel sick to my stomach and I constantly have anxiety and fear traveling throughout my whole body. The sounds of Hunter suffering will echo in my ears forever...............

A very sad daddy holding on to Hunter for dear life.



Getting ready for his Cat Scan. Swollen and sad with a shiner on his left eye.





Snuggling with my bean.



Getting ready for Versed - the happy juice. Makes him stay still and not panic during the procedure.



Happy juice taking affect.



Going in for the Cat Scan.



One last giggle now that the Cat Scan is over.



Doing a chest Xray to locate the fluid in his lung. Hunter was sooooo not happy to have to get out of bed for this.



Getting ready for his Echocardiogram to check the status of his heart before we started the last round of chemo.



This is the chemo Mitoxantrone. It's electric blue and is as potent as it looks. Would not want to mix that in a cocktail. You'd be drunk AND stupid.



Chemo kickin' his butt.



One of Hunter's 105 degree fevers.



Sneaking in a smooch.



Hunter and dad.



Getting ready for more chemo. Not particularly happy about it. I think he's trying to hide. Don't blame him.



Zen and I smiling the night before we got the devastating news. Haven't smiled like that since.

12 comments:

Mariela said...

Don't have words for you tonight. i am sorry...i do want to say something to help...but i only have tears...i can't imagine your pain not in a million years...love from a far XX

Leslie said...

I am at such a loss for words here. I have been a longtime reader/lurker and have never commented, but I'm coming out of the woodwork now to wish you all much love. My thoughts are with you and especially Hunter - what a special little boy he is.

Tonia said...

My thoughts and prayers are with you and your beautiful family. Hunter is an amazing and strong little boy.

catherino said...

I'm so terribly sorry. Please know you will all be in my prayers.

Cathy in Modesto

Ronald said...

I wish your son would be free from this terrible disease. I know the pain... I lost my son to this dreadful disease last May 10... The pain will remain for the rest of my life.

Megan said...

Lenore and Todd, I think about you allll the time. Amazing people. Your incredible journey has been so painful, no one should ever endure this kind of pain. Hunter is so wonderful, please give him love from Tory and I.

Anonymous said...

What a beautiful family, I too have lost my daughter Sophia to AML and reading your words bring back so many emotions, their is no right or wrong decision. Follow your heart, I know how hard it is but follow your heart.
Raven

Sheri said...

I keep writing & deleting, no words. So many tears & an aching heart. I can't even begin to imagine what you are going through & it tears me up to read these comments from parents who have experienced this & lost. My heart breaks for all of you. I can only pray & cry with you. I will pray hard. Go with your hearts & please let us know if there is something we can do. Please hug Hunter for me as tight as you can. Much love..

MKPatrick said...

My dear Lenore, Zen and Sweet Hunter,
We love you...you brave, strong family. So unfair and so wrong. Please hug and kiss our little Hunter, We continue our love, light and prayers for a miracle.
The Patrix

Gina said...

Many prayers are headed your way from me a complete stranger to you, but an admirer of the hero little Hunter is.

Anonymous said...

Sending you more strength and love your way to help you fight this long hard battle...

Ms. Mama said...

I know how you feel.