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.

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.