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, December 3, 2009

Squeaky Clean Marrow!

(Day 171 Post Transplant)

We officially got the reports back from the "Head Chief's" desk and Hunter currently remains cancer free. The one cell that was spotted in early October has somehow been destroyed. Yay for strong, new Kick Ass marrow.........and a couple of herbs. He continues to be 100% donor and he is feeling just absolutely fantastic. What a precious holiday gift.

Monday, November 9, 2009

2 Years of Hell for 2 Weeks of Joy

(Day 152 Post Transplant)

Hunter and our dog, Bisous (Bee-Zoo)

His new best friend.........I think Bisous is enjoying himself??????? Ha!

I have to start out first by saying that I feel so completely privileged and honored to still be a mom. Hunter is such an incredibly, wonderful blessing that I just absolutely cherish and to still have him in our life right now just tickles me to no end. My heart feels as if it's glowing and I can't stop looking at him and smiling........I have a constant ear to ear grin. The last two weeks have been absolutely amazing. Hunter has improved by leaps and bounds and is obviously turning a well deserved corner. A corner that, for a long time, we weren't sure we'd get the chance to see.

For those that haven't read the update on Facebook, his Cymerism results came back and Hunter is still 100% donor. That was really nice to hear. We will still do another Bone Marrow Aspirate this coming Monday, (Nov. 16th), to check on everything at the marrow level.........but, as of now - Hunter remains cancer free.

For the first time in two years.............Zen and I can take a deep breath. Or maybe 1/2 a deep least until the next scare - which, by now, our minds and hearts have learned to remain on constant alert. But, I'll have to tell ya.....just having some peace of mind over the last few days has been so delightful. I almost feel normal.

It's been a really long haul and I finally feel as if we are being rewarded for every last bit of pain and suffering and heartache that we've all had to endure. Hunter's body has been under constant attack basically since last December ..........starting with pneumonia, then a cancer relapse, then the cancer attacking him again, then a tremendous amount of chemo with radiation and every other ailment you can think of topped off with a Bone Marrow Transplant. He hasn't had the chance or the opportunity to feel good for soooooooo long. And it's finally happening. It's truly such a delight to see.

Hunter and his other favorite pet. We caught a frog and kept him as a house guest for about 3 days. Hunter was fascinated. He slept in our bed, hung out with us at meal time........and enjoyed cozy nights by the fire. We found him in our cabbage and nicely placed him back after his visit. He waved goodbye, shed a tear and off he hopped. Very charming that frog.

I keep reliving the memory of being given the option to go home with Hunter when it was looking like his life was about to end and I CAN'T EVEN IMAGINE missing out on the wonderful smiles and togetherness and moments that we've shared as a family over the last two weeks. I am forever grateful that we didn't give up on him. It's like we have our kid back and his little personality is just beaming and he laughs and giggles and cracks himself up throughout the entire day. This is the most we've seen from Hunter EVER. What a sweet surprise he's been. Within 2 weeks, so many of our sad and scary memories have been replaced with really wonderful memories and visuals of Hunter's smile and him wiggling his butt and his sweet, sweet voice. Even with the fleeting moments of sadness and anger realizing what we've been missing out on, we are still filled with such incredible feelings of love and gratefulness and absolute pure joy. Hunter is still here, and he has our hearts to their fullest extent and to see him finally "alive" and well has been so completely refreshing and soooooo much needed for all 3 of us. Yay yay YAY!!!! I applaud Hunter's strength and will to survive and am thrilled we gave birth to such a champion.

Hunter deep in the trenches.........fighting for his life.

As far as Hunter's check-up schedule, we still go to the hospital twice a week for blood draws and transfusions. One of the consistent questions we are asked is "how's he pooping"? It's a very good indicator on how his body is processing food & meds as well as how active his graft-vs-host disease is that he has going on in his gut and upper stomach. We've become very good at describing the lovely textures that come out of Hunter's bottom. For the ease of the doctors getting a quick visual.......we often use food - mash potato, easy gravy is common, melted granola with raisins seems to be a favorite, wet hamburger is another, and Hunter's last creation - stinky tapioca. Good one dad. He is still taking 11 meds in the morning, 3 in the afternoon and 8 in the evening. They consist of steroids to prevent his graft-vs-host disease from flaring up, antibiotics, anti-fungals, one med for high blood pressure, which he most likely has from taking the steroids, and then his calcium, magnesium and potassium to keep his electrolytes in tact. Giving all of these meds used to be a full time job - but now we've seemed to have gotten it down to a system and it's pretty easy to maintain. A job dad gladly handed over to mom. hmmmm.............

This is medicine time at our house. Good fun. The wine in the background is mamma's medicine.

This is one of Hunter's steroid temper tantrums. Really no fun at all. He just lets us have it for about 5 minutes and then he snaps out of it. whooooosh. It's like Gizmo turned mad, insane, Gremlin. He truly goes out of his mind like a crazy person. Thank goodness we love him so much or else we would have dropped him off at someone's door step like 3 weeks ago!

In addition to his meds, Zen and I also decided to hit Hunter with some herbs when we got the original report back that they spotted a troublesome Trisomy 21 cell. We did a 2 week regimen of Green Tea, Fever Few, Slippery Elm and SC Formula, which is a shark cartilage and reishi mushroom combination. Different amounts on different days depending on how Hunter's body was tolerating everything. He seemed to handle the herbs just fine and it is something that we'll continue to do on a consistent basis. That, thankfully, is a dad job.

Hunter asleep in a wheelchair at one of our clinic visits. He was getting transfused all day long.......and he refuses to stay in a we continue our routine and go around, and around and around.......I'm not kidding. If he's passed out and we stop for a second - he wakes up soooooooo fast and the only thing that comes out of his mouth is "MOM go pwease". hee hee.

Hunter still has his nose hose, which we now only use for medications. It's so much easier to just stick all 22 of those meds in a tube, rather than have to mix them in pudding and have to coerce Hunter into eating some yum yum 3x a day, which is what we used to do. Made medicine time so less desirable. Hunter........needless to say..........will no longer open his mouth for chocolate matter what.

Hunter with his nose hose and his swollen game face on. Dad took him to the zoo and he took his train ride very seriously that day.

It's pretty funny the number of stares Hunter gets from people walking by when we are out in public.......I guess most people have never really seen a 3 year old with a nose hose and sometimes a donald duck and mickey mouse mask, and on extra paranoid days - the bubble stroller cover.............which officially makes him the traveling "boy in the bubble". I am sure I would stare as well out of pure curiosity, if it wasn't my kid......but, it would be nice to have another one of those flyers to hand out to people so that they know that they are walking by and witnessing a miracle. Maybe they can tell now by the huge smile on my face that doesn't seem to go away.

Hunter hiding in one of our cupboards after terrorizing the house all day long.

Zen and I almost forgot what it was like to be parents of a toddler. He hadn't really moved for the last 3 1/2 months! He wasn't crawling or walking. He definitely wasn't dancing. We had to carry him everywhere we went and man has he grown.......he's a heavy sack to pick up these days. He had to re-learn so many little things and get the muscle strength back for so many simple tasks. He just took his first steps on Halloween and it was such a nice reminder that Hunter used to be REALLY active. So much fun to see him up and around.........not to mention we've noticed how TALL he's gotten. WOW. He's grown so much over the last 6 months and it was hard to tell because he was always sitting or laying down!!

All of us on Halloween. We carved three pumpkins and all he did aaaaalllllll day long was blow out the candles in the pumpkins and watch the smoke go up. Zen and I didn't seem to care...........It the was the best Halloween we've had in a long time, (Hunter was sick for the last two). So we just sat and smooched all day.

Hunter's stroller ride home on Halloween night. We were all so happy that he walked! It was truly the best Halloween EVER!!

2 Years of Hell for 2 Weeks of Joy.................was it worth bet your ass it was. And I'd do it all over again if it means we get to keep Hunter for the rest of our lives. Our meaning of life has truly been evaluated time and time again over the last two years. And I'm not really sure we've come up with any answers yet, but I know this..................Hunter is the single most important thing to us right now. He's the first thing we think of when we open our eye's in the mornings and he's the last thing that crosses our mind before we lay our heads down to sleep. Our dreams are sweeter, our days are enlightened and happier and our life feels complete again. So until the next challenge, we're going to try to enjoy this life we've been granted...........another one of those celebration moments where we'll sip the wine and pass the cup! Cheers.

Hunter's Birthday and Life Celebration. It was a lovely and much enjoyed day.

Thursday, October 15, 2009

Jaymun's Journey

........and what a journey it was.

Such a sweet, beautiful, little soul that will live in mine and Zen's and Hunter's hearts forever.

We've been following his courageous story and applauding all of his efforts, as well as his parents, for some time now. We are very, very, very saddened to hear of the news of Jaymun's passing and have still yet to recover.

Jaymun's father has been a huge and integral part in figuring out and managing Hunter's herbal regimen. We can only hope to continue to be guided by his knowledge and all of his amazing accomplishments in keeping Jaymun's cancer under control and keeping his son alive for much, much longer then the doctors every thought was possible. Truly remarkable.

Our deepest love and sympathy and warmest wishes filled with strength and peace and comfort are being sent to his family.

Jaymun......may you rest without pain, may you rest without fear, may you rest with all the warmth and cuddles and snuggles that hugged you so tightly when you were with us. You made such a difference in our lives........and you will never be forgotten.

Friday, October 2, 2009

Happiness granted........& happiness taketh away

(109 days Post Transplant)

We found out in clinic on Wed. that they detected a Trisomy 21 cell in Hunter's blood work. They've told us that it could be an active cancer could not be. They apparently only found 1........but, unfortunately, that's all it takes. We'll test him again in another month, and apparently the doctors are hoping that his new immune system takes care of it and terminates it on its own.

Sooooooooo not too bad.....just a months worth of stress & terrible heartaches and a constant fighting back of the mental demons that seem to be getting harder and harder to keep further away from the forefront of our minds.

So here's the deal - the Trisomy 21 genetic marker that Hunter has been spotted with is actually the down syndrome chromosone that is prevalent in most down syndrome children. Hunter doesn't carry this cell make-up throughout his entire body.......but his CANCER cells DO. So, in the past, whenever they've spotted the Trisomy 21 cell.............the cancer was usually piggy backing. It's very unusual and another characteristic that makes Hunter's AML Leukemia unique.

Needless to say..........Zen and I were once again devastated and spent most of Wednesday and Thursday confused, sad, randomly crying.......and just plain out of words. I feel as if there are a thousand needles stabbing at my heart on a pretty consistent basis, and those needles are speeding up and getting sharper every time Hunter says "mom", or "daddy" or laughs or shows us something cool or looks at us..........pretty much any interaction that I have with Hunter is slightly hurting right now and it's such a sad, sad, maddening state of mind to have to constantly continue to get out of.

For now we have to continue to focus on that little love of ours and enjoy every last bit of him. We completely realize that. Zen and I keep reminding one another of this simple act and definitely assist each other when one of us spots the other zoning out and about to crash and burn. It's pretty recognizable in our faces now when we are thinking about our life and our son and why we have to fight so hard to keep him alive and how truly unfair this all really is.

We will go to clinic twice next week and like they normally do, they'll draw blood and run labs and look for any additional unusual activity going on. We spoke to one of his doctors before the weekend and she reassured us that THEY are NOT freaking out yet. They feel as if they need to keep a VERY close eye on it, but that one cell just wasn't enough to feel as if Hunter is about to go into a full-on relapse. It is actually common for one or two to be spotted in post bone marrow transplant patients, but in Hunter's case......because of his history and how his cancer presents could be the devil.

Hunter going in for his Bone Marrow Aspirate, obviously already sedated. It was day 98 post transplant and it was actually on his birthday.........geez.......not such a fun birthday.

Zen and I waiting outside the procedure room waiting to pick him up.

Waiting anxiously for him to wake up.

Off we go..........just another day in the life of Hunter Zen Thawley.

Tuesday, September 15, 2009

Hunter's Transformation

Hunter 1 month old.
A true treasure.
6 months old.
14 months old......freshly diagnosed with AML Leukemia in December of 2007. This was one of his first smiles after being in the hospital for about 2 months.
and believe was hard to get.
1st round of chemo.

Went with the mohawk after his hair started
falling out on the pillows.

3rd round of chemo, handling everything like a champ.
4th round of chemo
5th round of chemo........sometimes not so fun.
This was a really hard round.

In full remission after 5 rounds of chemo
and 9 months in the hospital.
Hunter 2 years old.
Obviously feeling pretty cool.

Enjoying life being cancer free.

Hunter right before he got his pneumonia.....
shortly after, he was diagnosed with his AML Relapse in January of 2009.

Hunter's cancer had returned
after 6 months of being in remission.
1st round of chemo...........
here we go all over again.

Feeling pretty good after 1st round.

Right after the 2nd round of chemo.....
there were still traces of cancer in his marrow, so the doctors advised that we do another round to try to remove all of the remaining leukemia.

This is right after the 3rd round of chemo, the experimental Clofarabine.............. didn't do a thing and the leukemia almost killed him.

The transplant was postponed........and the possibility
of now even making it to transplant was slim to none.

We did another intense round of chemo
with hope of saving Hunter's life.

Pretty sad and scary times.

But so far it was the right decision.........we were on our way back to transplant.

Transplant day........and happy to be there.

On his way to healing.....

Cat scan of his chest to check for a possible virus due to his low immune system.

Short bump in the road with severe Graft vs. Host disease in his gut, upper stomach and skin.
Another horrible side effect of the Bone Marrow Transplant that could have and can still take Hunter's life.

Kicked that and was on his way again to living a healthy life.

Even though he is finished with his transplant.......we still get constant infusions of certain medicines, platelets, red blood, calcium.........whatever his body is lacking during this whole name it......there's a supplement.

This was us two weeks ago rushing to the emergency room
with swollen cheeks and a face bleed
that wouldn't stop. Turns out he only needed platelets.

Thank goodness he recovers so nicely..........
this was last week on the morning of his birthday party.
Happy as a clam to still be alive and turning 3 after 2 years of fighting.

So..........almost a full 2 years later, Hunter finally had his Bone Marrow Transplant. And all he had to do to get there was 9 rounds of chemo, a whole butt-load of bone marrow aspirates and biopsies, tons of x-rays and numerous cat scans, 5 picc-line surgeries and 2 broviac surgeries, a bronchoscopy once or twice, a colonoscopy, pneumonia, a bunch of bone scans, mri's, echocardiograms, graft vs. host disease, cedif, myositis, typlitis, hmmmmmm...........what else..................oh yeah........and a whole hell of a lot of tears, heartache, deep.......deep seeded pain and fear...........and life changing emotions that will forever change the way we approach life, appreciate life and live life. We can't help but to sometimes feel as if we are on borrowed time with Hunter and that all of our sweat and tears and accomplishments can be taken away at any given moment. Just like that. So we live life now with Hunter's best interests at heart. And however long he has on this planet..........we are going to make sure that he has the best possible life imagined. I can't think of anyone who deserves it more.