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.

Thursday, March 26, 2009

Hunter's my HERO.......for Life

Hunter blows us away in every way possible. He's such a unique kid and he's starting to glow more and more every day. When he was first diagnosed with AML Leukemia at 14 months......he was still just a baby. He was just then starting to show his colors. And then once he got sick....he kind of zipped it up for awhile and kept to himself. Now........he's full on enjoying himself, laughing and playing and expressing himself like never before. It's a strange thing that makes it that much harder to believe that he's really as sick as he is. There is a cancer in his body that could take his life and it just doesn't seem real when he's racing around the room, giggling, having the best time he's had in the last year.'s kinda no fun.

We still haven't had our official "Bone Marrow Transplant - talk" with the doctors - but apparently, it's a really hard session. We'll be told the worse possible outcomes, all the terrible risks and all of the horrifying things that we'll be experiencing for the next 30 to 90 days. We've heard through the grapevine that actually seeing your child get radiated leaves a forever imprint in your mind that will remain with a punch in the gut for the rest of our lives. After the actual transplant, there is a disease called Graft-versus-host which will be when Hunter's body accepts or rejects the bone marrow that is trying to take over his body. It's the disease brought on by the effort to cure the leukemia that could actually kill him. Apparently we were told not to wish for it, but that it was a good thing if he got it "a little".........but that if he gets it too badly.........there's no pulling back.

He looks at us and smiles so big every day now.................and he has no idea what's about to happen.

I've collected some photos of some of Hunter's procedures and events over the last year 1/2 of his life. Much different than mine or Zen's first 2 years of existence.

Below: Hunter's 1st round of chemo, December 2007, at 14 months.

A 104 degree fever.

Hunter and Mom.

Hunter and Dad.

Bone Marrow Aspirate recovery.

Hunter's Chemo IV Pole.

Playing in the hospital windowsill. 

Hunter's Pic Line. He's had 5 of these.

We refer to these as the "Acid" Eye Drops. Hunter HATES them.

Dad letting go. We've said it's one of the worse parts.

No words for this.

Sometimes this was a daily dose of meds.

After all the Pic Lines came out, he was given a Broviac. He will be getting another one of these right before his bone marrow transplant.

Routine Echocardiograms to check the status of his heart.

Tuning everyone out.

Swollen and sad.

Cat Scan

Bone Scan.

Under Anesthesia.

After his Bronchoscopy - 104 degree fever..............again.

His Pneumonia.


Bad reaction to drug.

But when it's all said and done.....................he still ends up smiling.

Tuesday, March 10, 2009

The Financial Meltdown

Holy cow.

So under the Screen Actors Guild insurance, it cost us 500 bucks to give birth to Hunter.

It will cost a little over 2 million to keep him alive.

Everyone wants to know how all of this works and how we can afford to pay for the huge amount of hospital bills that are starting to pack our mailbox. Well....................we have no idea ourselves.

Just to give you a taste........I just opened a Blue Shield of California claim that was in the middle of being processed. They haven't given us our amount that we owe yet, but just for 7 days at Doernbechers Children's Hospital from Jan 12th to Jan 19th..........the bill ran $50,242.69..........yup..........50 grand. (We are now in our 8th week).

We also just received 3 anesthesia bills totaling $1,000. Do you know how many times Hunter was put under.................A LOT.

The treatment bills are also starting to come in and so far those are totaling $3,262.04. That was for 12 Xrays, a Bronchoscopy, 1 CT Scan, 2 Bone Marrow Aspirates and a Spinal Tap. woooo hoooo. Bargain..........sincerely.

It also costs $228.00 a day to stay in the hospital. Last year we stayed in the hospital 8 months. This year it will probably be about 6, give or take a few.

The average Bone Marrow Transplant, without any complications, is a minimum cost of $250,000. Then once you add hospital stays, antibiotics, anti-fungals, blood transfusions, chemo, radiation ...............ummmm........hmmm......the list goes on and on and everything adds up really quickly. Even if we were millionaires, this would be hard to stomach.

To add more fun to this basket of crap......Blue Shield of California is making us come back to California for Hunter to get his transplant. So now, as soon as Hunter is well enough to transport, we have to pack up and basically go live on the road and in the hospital for the next 3 months. Can't say we're too happy about that. But since his insurance policy is in California, they want us to receive treatment in California. Let the good times roll.

Hunter getting the mail. We make him get it now and hand it to us...........makes the pile of stress much sweeter.

On a much lighter note - Hunter finished his 2nd round of chemo and handled it like a champ. No puking, only three 104 degree fevers and no far. We are still in the hospital and now the chemo actually starts to kick in and kill all of the Leukemic cells that are remaining in his body. The bad thing is that the chemo also kills the good cells. So he'll be closely monitored and maintained for the next 3 weeks. During this time he usually also receives lots of blood transfusions, will stay on antibiotics and they usually always throw in an anti-fungal. They taste terrible, but they do the job.

Hunter's last day outside before spending the next 30 days in the hospital.

The walk is over and now the car is packed up and we are heading back to Doernbechers with everything but the kitchen sink.

Last breath of fresh air before we enter admitting.

I think he knows where he is and doesn't seem to be too smiley about it.

Once inside and all checked-in, he gets a basic examination, his blood drawn, chemo injected into his spine and we are sent off to our room for a good nights sleep.

He's worth every penny.

Zen and Hunter and I are sending huge hugs and kisses filled with a tremendous amount of appreciation to everyone that has contributed to the Leukemia foundation on behalf of Hunter and to the Healing Hunter Cause on Facebook. Every little bit helps and you've all helped waaaaaaay beyond what we could have ever imagined! Muah, Muah MUAH!!!!!!