Our lil' Birthday Boy

HAPPY BIRTHDAY my sweet lil' prince pie - our love for you runs so incredibly deep. Your dad and I are holding on to as many memories as possible and there will always, ALWAYS be a special place in our life for you. I won't let you go. I won't ever, ever, ever let you go. As painful as it is to accept the fact that you are not here for us to smooch from head to toe......we thank our lucky stars that you graced us with your amazing presence and taught us how to live; even when we thought every last bit of our being had given in. You kept us laughing; even when our smiles seemed lost and forgotten. And you've fully shown us how to love.....even though we've been left with a broken heart.

You were so easy to love........sweet dreams baby.

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Hi my sweet lil' love..........i miss you.....i miss you......I miss you.........I miss you....so incredibly much. I am going to do my best to be strong and keep it together as I write you - but already, my face has an ocean of tears just streaming down it, collecting big, big puddles in my lap. The thought of actually seeing you and talking to you and holding you, oh goodness, it would be an absolute dream come true for me.

oh love.....I am still so incredibly devastated. I can't even think right now. My hands are shaking, my tears won't stop, my breath is gone. You not being here has shattered us. You were magical. Truly, truly magical and that just stops your dad and I dead in our tracks some days.

You have brought out such beauty in so many people - myself, your father and your lil' brother, Ryder, included. That magnificent sparkle that was so extremely bright while you where here - is still shining ever so lovely. I feel it within myself, and it's expressed in the love your dad and I have for each other, and the love that we have for Ryder. Ryder is the magnificent recipient of so much love and affection......and he just BEAMS every single day because of what your dad and I discovered in ourselves through you. You've created this love pocket in us that is just absolutely explosive. You still continue to bring out the best in us........that just warms my heart.

You would have been the most perfect older brother. Oh man - I could only IMAGINE how completely wonderful it would be if you were here. Ryder would have LOVED you. Absolutely, most definitely LOVED you. You would have been the coolest thing since sliced bread. You would have been so, so fun for him to follow around and tug on and watch and learn from.....so cool...so carefree....so courageous and loving. I honestly can't wait for the day when Ryder fully understands who you are and how important you are to the family. He's only 13 months right now.....so he's got a few months. He gets some things right now like "going outside" and "snack".....but not quite everything just yet. But soon. Soon, he'll get the full story of our lil' hero - Iron Hunter and how truly magnificent your lil' being really was....and still is. :)

Here's Ryder trying on your Lightning McQueen hat and shoes. He clopped around the house in those for quite awhile....he's a big fan.

Here he is wearing your Iron Hunter t-shirt. We all sport those QUITE often. They are super, super cozy and I'm just so proud of what is says........you were a real "Super Hero"......I love that.

You two look a lot alike - you can definitely tell you're brothers. Here is a collage that I put together of the two of you at 8 1/2 months.

Ryder loves, loves.....LOVES music. He's got a pretty fancy wiggle and also threw down some hip lil' side steps recently. Very surprised he pulled some of those moves out. You must have done a lil' work on him somehow. He's pretty cool. Plus he's a sweetie pie......you two together would have just taken turns melting my heart.

You both also have a very strong, cool confidence about you. So fun to watch and hang out with you guys. Always seem to have something going on.

Watching Ryder grow is reminding us of so many incredible moments we had with you. It's fun to compare and see the similarities as well as the differences. And thank goodness we have as many videos of you as we do! We feel so completely fortunate to have that many. Your personality just JUMPS right off the screen in every one and I just love, love, love watching you. They allow me to fully remember your giggle and your sweet, sweet ways of expressing yourself and all the fun we really did have.......despite all of our challenges. I don't think there was a day that went by that we didn't find something to giggle about........

People from all over the world still continue to find your story and send us messages. They all begin with such wonderful comments about you and your beautiful energy and strength and courage. They talk about how many times throughout their day that they think of you, and how much you've inspired them. Of course they talk about what a great lil' dancer you were.....such FANTASTIC moves. I could beat music on pots and pans for you all day long. Oh you just stole my heart. I miss your hugs. Oh how I miss your hugs baby love.

A year and a half now that you've been gone and I still sleep with "Henwy" under my pillow....I still have a candle constantly lit for you......makes me feel like there is a happy, lil' spot of love-light continuing to just brighten up the room. I am never without my Hunter necklace.....it still gets smooched every night when I take it off and every morning when I put it on. There are beautiful images up of you pretty much everywhere - living room, family room, kitchen, dining room, our room, Ryder's room, my office, my closet.......and there isn't a second that passes that I don't consider ourselves lucky to have had such an amazing lil' boy in our lives.

Your Angel Anniversary was a very special day for us. Your dad and I took Ryder and we went back to our special lil' spot right next to the room we stayed in with you at Cannon Beach. We've been back there a few times now....it's a pretty amazing spot for us. As soon as my feet hit the sand I feel you......I will never, ever, ever forget that day on the beach. A day filled with such hope and love and happiness.........I enjoy remembering days and moments like the ones we had on that special day. That whole trip was amazing.

Here you are walking in the sand........oh we had so much fun that day. You were walking around everywhere and I was getting such a kick out of finally having to chase you around! You gave me a run for my money that day. :)

Here we are below on your Angel Anniversary, a little over a year later.....walking in the sand......just like you. Even Ryder was doing it in Dad's Kangaroo pouch.

And of course "Henwy" had to get in the sand. Even when we travel he comes and sleeps under my pillow. He likes it there. I'm still waiting for you to come get him in my dreams. :)

OH and I can't forget to tell you that we also saw this BEAUTIFUL rainbow right as we hit the clearing to the water. Stunning.....in was so, so cool love.

Geeeez.......and one more thing - we did our first Healing Hunter Foundation Toy Drive on your Angel Anniversary and brought up over $5,000 worth of toys to the kids at Doernbechers, including an iPod Touch, a super fast big wheel, two laptop computers and OF COURSE - a kick-BUTT Lightning McQueen Tricycle that's got your name on it so everyone knows to speed around the hallways with lots of Lightning love.

So your foundation that we started on your behalf has been just absolutely wonderful. Aside from the toy drive we did on your Angel Anniversary we also stopped by on Easter and delivered tons of delicious goodies and yummy cupcakes - which is what initiated the whole start of "Lightning Cupcakes"......also in your honor of course. With all the love and support out there for you......it just TOOK OFF! And a lil' bit of Hunter love goes into every cupcake. So now you are in my heart, my thoughts, my smiles and my tummy often. I see your beautiful face constantly throughout my days and most times it makes me think super sweet thoughts. I try my hardest to think of you at your very best, having just the coolest time of your life.....I'm glad you had so many. It gives me lots of things to pull from. Man you were cool.

Below is the Easter Delivery to Doernbechers on behalf of the Healing Hunter Foundation!



Oh and I almost forgot to tell you the COOLEST thing! You'll really like this.......we are delivering iPods to all the lil' warriors battling cancer up at Doernbechers on your birthday for the Healing Hunter iPod Birthday Bash that we created. We thought you'd get a kick out of giving such thoughtful, useful and amazing gifts that the kiddos can use while they are going through all their treatments. Several extremely generous and very loving individuals donated one to each kid fighting cancer in your honor. Pretty neat I'll have to say. You bring sweetness to the surface in lots and lots of people. Still continuing to make me proud. Aaaaahhhhh.......

Below are the iPods that were donated and then the AWESOME packaging we created for them!!

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Life seems to be one brilliant, sequence of events after another my lil’ love. And the time we had with you was nothing short of spectacular. 

This magical, whirlwind of love that seems to corral around you and your legacy is just simply amazing. I’m sitting here in a sweet, puddle of tears as I realize the size of the impact you’ve had on our life and so many others.

Your dazzling light, your love, your spirit…your joy, your giggle and your dynamite wiggle

continue to get delightfully, packaged up and delivered to the warriors that are still here fighting.

Our special lil’ packages that we deliver are always bursting with hope and smiles and lets these brave kiddos know that we are all standing behind them…supporting them, encouraging them and constantly cheering them on.

Thank you for continuing to be such a powerful force of love.

You are my Superhero.

Keep us strong, sugar pie.

LOVE you Bean!!!! XXOO

#HunterLove

#LiveToLove

#HealingHunterFoundation

#DoernbecherChildrensHospital

#RandallChildrensHospital

One Year...and still stumbling....

Wow baby love. I can't believe it's been a year. I can't believe I have been without my sweet baby love for a whole year...........365 days. Three Hundred and sixty-five days too long. To think that I have the rest of my life to go, frightens me. I truly and honestly don't know how I am going to do it. Missing your love and your smiles makes me feel so incomplete. So incredibly "out of sorts". There is such a huge part of my being that has just transformed into something unrecognizable. I'm still so sad.....still so heartbroken......still so absolutely crushed that are you not here with us.

Your dad and I have been thinking about you like crazy. We watched video after video after video of you last night, and you continued to put on one stellar performance after another. You are SUCH an amazing lil' boy. I feel like I say it in every post, but I just can't say enough how very proud of you we are......your kindness, your laughter, your gregarious lil' personality - oh my......just so wonderful to watch. Such a sweetie.......really.

I just popped in a disc that was labeled "Hunter"......within seconds, images of you started loading up one by one. I'm bombarded with so many thoughts and feelings and emotions all at once.....everything just seems so unbelievable.

My first thought was "my goodness...you were just a baby". Just a baby when all this started. So tiny and so cool. Handling everything with such calmness. Took the punches as they came with such ease, while your dad and I felt each blow with an intensity that would leave us breathless for days.

Here you are waving about to go in for your very first Cat Scan.

This was after your knee biopsy. You handled that like a champ. However, you weren't so fond of the cast after awhile. Dad finally cut it off when no one was looking and you were sure happy about that!

Seeing these photos and looking back at our journey, having you in our life was so incredibly joyful. What you brought to our family was an energy that was so powerful. So pure and so full of courage.....so full of confidence.

This picture below made me smile....you are only about 15 months here........so serious. tee hee. Man did you ever love your DVD player. I think we ended up going through about 10 of those over 2 years. A few went overboard off the hospital bed, a few malfunctioned and a few just plain got burnt out. We must have watched "Cars" a million times......seriously. Lightning McQueen rules.

I am thinking about now how very grateful I am that we got to hang out every single day. We spent so much time together and it was always such a treat - good times and bad. You were such a magnificent play partner. I could always tell when you were starting to feel better and were ready to start having a good time.......you were pretty easy to read at that point and ALWAYS came up with creative outlets.

And always such a good snuggler.

I'm also coming across pics of your first mohawk. What a cutie. You sure knew how to rock that hairstyle. You were the cutest kid on the floor.

And loved when pics of you on the slides came up. Those were your favorite. Hated swings.....loooooooooved slides!

This was you in Australia. You played for hours. Such a beautiful sight.

Then I came across this pic. Made me chuckle. We always took advantage of laughter. You were always such a willing participant. Love you so much for that. Joy was brought to every occasion possible.

You just thought you were so funny calling the nurse here.......

And of course a great giggle video. Here you are cracking up about to get a Spinal Tap........just so FULL of giggles.....non-stop.

This video just makes me smile and smile and smile. You can see so much of your personality here.....

Also found this video.......swept your dad and I away with laughter and tears. Wow did you know how to grove. Soooooo much fun to watch! Any kind of beat just took you away to another place. You felt music down to your wee lil'l bones. So soulful.

Hunter Zen....unlike any other.

Life is cruel,
life is kind,
It's stolen my happiness,
and left me behind.

Constant effort to look up,
away from the floor,
in search of my smile,
to find it once more.

It's buried within,
amongst wreckage and tears,
Not knowing if it will come out,
after facing my fears.

It's definitely not the same,
nor will it ever be,
for he's left a tremendous footprint,
on my soul, that remains in me.

Eventually.......he'll ignite a flame,
that will shine oh so bright,
and I'll treasure his life and love,
through me, I will shine his light.
(Hunter's Mom)

Your are brighter than ever baby love. Thank you for being the phenomenal child that you are. Love you so much.......
XoXo Mom and Dad

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 breath...........at 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 room........so 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 pudding.......no 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 it..............you 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.