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.

Sunday, June 29, 2008

Lovin' Life.......and always will!

We're home! We've been busy, busy, busy, but I wanted to get everyone a quick update. Hunter is doing amazingly well and we are thrilled beyond belief that our hospital sleep overs have ended!

I will write more in a bit but here are a few images from the last days in the hospital!!!!!!!!!

This was us waiting to go in for his 4th pic-line surgery. That was the one that went bad three days later.

This was a typical days dosage of antibiotics, tylenol and potassium when he's getting a blood transfusion and his anti-fungal.

Here is Dad and Hunter waiting to go in for his Broviac surgery. The Broviac is the new access line that will be placed in his chest instead of his arm. This will allow us to continue to deliver his anti-fungal for the next 4 weeks at home.

Here is where we say goodbye before the surgery.

Always easier once the "happy juice" kicks in.

Here is the actual Broviac line after the 45-min surgery.

Sitting cool looking green from the surgery soap.

Getting annoyed with mom & dad taking photos. I guess I would be too if I had a hole in my chest.

Last day in the hospital waiting for the discharge papers. Can you tell we are excited to leave.

Hunter's last hang out in the windowsill.

We saw our last helicopter coming in to land - you can't read it, but underneath on the belly of the copter it says "Baby on Board".

Hunter's last stroll through the 4th floor hallways. Hopefully he never walks those halls again.

This was the fourth and final wagon load the day we left. Don't mind not doing that ever again for the rest of our lives.

Hunter at home after his hospital scrub down!

Hunter passing out in bed. He slept like a rock.

What we left behind on our hospital dry erase board.

Sunday, June 15, 2008

Proud Mama

Well, I’ll have to say, I’m definitely in a daze today. In some ways this morning I feel like screaming my head off and in other ways, I want to be so incredibly grateful for Father’s day and the fact that we are blessed enough to even be able to celebrate this day.

Last night was rough. Hunter’s FOURTH pic-line had to be pulled. It was just placed on Wednesday, but apparently it’s not positioned correctly and it’s causing great discomfort and not doing its job. Needless to say, he’s NOT a happy camper. Because of the lesion in his brain and the infections in his body they need to deliver the antibiotics and the anti-fungals somehow. However, they’ve IV’d his entire body to death. He’s had them in both feet and both arms SEVERAL times. His little veins are exhausted. It took 4 different nurses and emergency IV technicians to try to find a vein that they could access. Well by midnight, they found none and stabbed Hunter with the needle three different times. Boy was he upset. Instead of his face being swollen from all the medicine going into his body, his poor little face was swollen from crying so hard and for so long. To be honest, it totally sucked and was terribly heartbreaking and I desperately want this lovely journey of ours to end.

Another IV technician is supposed to come up by 3pm today to magically find a vein to stick so that he can stay on his antibiotic schedule. He’s already missed two infusions. I am trying to remain positive and have full confidence that they’ll be able to do what they need to do, however, I saw them searching last night and there was nothing to be found. I often refer to Hunter as our little Super Hero, so maybe his miraculous little body grew some new veins overnight.

Actually, as I am typing, the nurse just came in and said we need to go to emergency for one of the IV technicians to try down there. Off we go.........

Well we are back. Several tears later – from Mom, Dad and Hunter. Although Hunter had it worse than us. They finally found a large vein in his foot to place an IV that would last longer than 24 hours. So in went the needle. Which is a total bummer, because yesterday was the first day that he had the desire to get up and start walking again. It’s been 19 days since he’s walked. Now, with the IV needle in his foot – he’s not walking anywhere.

Sometimes, I sincerely feel like I have nothing left and just wander through my day aimlessly. It’s not often, but those days are definitely remembered. Today is one of those days. While Hunter was screaming this morning, I had to keep telling myself to have strength. I was gritting my teeth so hard to try not to cry and it didn’t work. What we’ve been through is so exhausting on so many levels it can sometimes be unbearable. And I know right now my face and head hurt from crying and I feel like every time I’m about to open my mouth, nothing is going to come out but tears.

Hunter is with Grandma and Grandpa right now at the hospital and we are back at the house for a wedding meeting. Yes on a Sunday and yes on Father's Day. When we left he was in good spirits and sent us off with smiles as we walked out the door. He’s so incredibly awesome.

Everyone says goodbye as we leave. We aren’t referred to as Zen and Lenore at the hospital we are known as Hunter’s mom and Hunter’s dad…………..we couldn’t be more proud.

Happy Father’s day to Zen. Hunter absolutely adores him. He is doing an amazing job and is a wonderful role model and exhibits everything I’d like Hunter to be. Calm, cool and collected! Total stud. Hunter has a lifetime of Father’s Days to come and we can’t wait to spend every single one of them with him.

And Happy Father’s day to all of the other cherished father's out there, including my dad! Love you love you love you!


Hunter about to get his 4th and 5th poke from the IV technician.

Hunter and Zen on Father's Day.

Friday, June 6, 2008

Wait a second - It's the hardest round yet.......

Just when we thought we were in the comes another body blow.

Hunter got sick again. Much worse this time. His current "presentation" of symptoms has been similar to when he originally "presented" cancer - 104 degree fevers and significant pain. The doctors started talking of a cancer relapse. Hunter was moaning. Mom and dad - devastated - trying to keep it together. It lasted 12 - very long days.

Hunter stopped moving. He stopped eating and drinking. Only his hands opened to grasp his favorite Car toys. He moaned, groaned and agonized throughout the nights. He cried every time we moved his body or changed his diaper. Terrible dehydrating diarrhea. Twelve days long.

First, he was hit with Alfa Hemolytic Strep, which could have been the cause of his 104 degree fevers. Antibiotics. Then he got a bacteria infection called C-diff. It offers severe stomach cramping. More antibiotics. They added an intravenous anti-fungal to his rather extensive list of "Anti's". Then a culture of the blood in Hunter's pic-line grew yeast. Doctors worry further about fungus and they call in the Infectious Disease team. Hunter gets a rather routine transfusion of platelets and then more blood.

Finally, they put Hunter in ISOLATION!!!! The C-diff is contagious and there is a risk to other patients. Total bummer about the C-diff, but YAY for isolation!

Testing started with heavy duty radiation from a head to pelvis Cat Scan. This discovered a 7mm spot of something in his brain. That's when they casually told us that all of these symptoms could be from a cancer (infarction) relapse. Or it could be an infection absyss - probably fungus. The possibility of the cancer returning - scared the doctors, nurses, and of course, us. We were all terrified the cancer was back. One of our favorite nurses began explaining the statistical downside of a mid treatment relapse. Once again......we hit rock bottom. Fully aware of the ominous drop is survivability statistics if in fact Hunter's cancer was back at the very end of the chemo treatment. Many tears were shed as Hunter agonized. Please God - give us fungus! Please, please, please let it be fungus of the brain. No big deal.

More testing began. First a bone scan. Then off to the OR for a bone marrow biopsy and bone aspiration. They stick a needle deep into Hunter's hip and get a bone and bone marrow aspirate. It includes actual bone fragments that they test to see the blood running thru his bones. Finally, another spinal tap to test his brain and spinal fluid for signs of Leukemia.

Oh yeah, since his pic-line was infected with yeast, they had to pull it. What do ya know. That means we've had a grand ole' time the last 4 days while Hunter's been stuck with a very sharp needle over and over and over. Sometimes starting at 6:30 in the morning. They've had to do blood draws and then they put in an IV in his left foot to deliver the antibiotics and antifungals and fluids and lipids. The IV's last about two days. Apparently they have a short life, especially when they've got as much going into them as they did and do. I guess one antibiotic in particular is very strong and kills the line. So they then replaced it with an IV in his right hand. That one blew so they now have it in his OTHER foot. We are actually leaving in about 3 hours to go downstairs for them to put in another pic-line, so that all the sticking can stop!

While all of this was going on, Hunter remained on fire with an average temp of 104 degrees. And he was in so much pain and discomfort that he actually became a morphine patient. Every 4 hours he calls the nurse demanding another hit. Four days of morphine and less sounds of agony. Zen and I probably could have done with a bit of morphine ourselves. We cried for 3 days straight.

Okay, okay finally - I do have some good news. His fevers have stopped and he's been fever free. At least for the last 48 hours. He's started to show signs of a comeback. He's getting spunkier and spunkier. More smiles, the return of head bobbing to music, and thank goodness he's starting to eat again. He's still in some pain and not walking or crawling but he is moving his hands, stomach and head.

Also, this round of treatment finally managed to claim the last bit of hair he possessed - his eye lashes. I am happy to report he's got peach fuzz growing back on his head! Woo hoo!!!! His blood counts are coming back up, and that usually helps heal all of the infections and bacteria invasions going on in his tiny body.

We are hopeful that this may be the end of the chemo road. Please, please, please...

Hunter on day 6 of 12 - not feeling so great. His face is swollen from all the fluids he's getting.

This is the anti-fungal they added to his antibiotic cocktails. Looks like something from Ghostbusters.

Here he is getting sandwiched in the bone scan machine for an hour - no place for a claustrophobic.

Here's dad holding his head still so they can get an accurate read on his skull.

There's Hunter! Nothing but skin and bones. Hee hee.

Here's one of the looooong hallways we have to walk down on the way to the operating room. Thank god the lights don't flicker.

Hunter's room sign. Sad bunny.

Here is the team of doctors that will be operating on Hunter.

Here is dad letting go - this is usually when a few tears are shed. We've been through this a thousand times, but it doesn't seem to get any easier.

Hunter after the sleepy juice. Definitely not as fun as the happy juice.

After the surgery - picking him off the table and transporting him while he's still under anesthesia. I hate seeing him so lifeless.

Behind closed curtains. This is right after the surgery in the recovery room when we are not supposed to see him yet - just in case anything goes wrong.

Our little love waking up.

Posted by Zen & Lenore

Sunday, June 1, 2008

The 5th Round Recovery

We've now been in the hospital this round for almost three weeks. Hunter has officially finished his chemo and has crashed at his zero mark. He had 104 fevers for about 4 days and they ended at the perfect time. Since they have not continued over the weekend, that means we don't have to do another Cat Scan. Woo HOO!!! Less radiation for our kid! The other good news is that his pic-line is NOT infected, which is another thing that could have been causing the fevers. They would have had to remove it and then stick him with a needle every time to draw blood, which is about 6-10 times a week. He is continuing his antibiotic routine with two big bacteria fighters and they've also placed him on an anti-fungal. He'll continue these for possibly the next seven days. The doctor came in today and said plan on about two more weeks at the hospital. Almost done!!!!

Hunter getting iced down at 104 degrees. The ice packs are under the towels. He doesn't seem to mind when he's an inferno.

Love to all XoXo