Hunter's "Derby Cocktail" East Coast Fundraiser

I've attached a link to the invitation to 

Hunter's "Derby Cocktail" East Coast Fundraiser. 

It will be held at 

Dantanna's in Buckhead in Atlanta on Saturday, 

May 2nd from 5 - 8pm 

- that's a week from this Saturday!! 

It sounds extremely cool with 

unlimited appetizers & an open bar 

with the Kentucky Derby on the big screens and a bunch of 

UGA Georgia Bulldogs and others!

(A donation of $25-$50 is suggested at the door).

HUNTER'S EAST COAST FUNDRAISER INVITATION

CLICK HERE

There is also a Silent Auction, so anyone that has any product, tickets, cool things that they'd like to donate to help raise money - please shoot me an email @ lenore@zentodd.com . The gifts would have to be shipped out on Monday to be received and checked-in by the event.

YAY!!!!!

The event is being produced by one of my Georgia Volleyball teammates who REALLY knows how to throw a party...........so I'm positive it will be a BLAST!

I will also be attending for the evening, 

(as long as Hunter's condition allows me)...........and 

I CAN'T WAIT!!!!!!!!

Thanks guys for all that you do for me.

Luv U.

Coming out of the dark.........

hey guys!

just wanted you to know that I am feeling much better and everyone is taking really good care of me. I get a daily delivery of hugs and smooches.

mom and dad are annoying me with all the photographs..........but I guess they have nothing else to do. someone send them some movies or something.

thanks everyone for all your love and support and toys you send. It means a lot to me and to my mom and dad.

love hunter

p.s. I'm gonna beat this disease and i'm gonna be o.k. my mom and dad have big plans for me. I'm as fast as Lightning McQueen and as strong as Buzz Lightyear. i won't be defeated.

Sleeping with Flames

Hunter had a fever of 104.5 last night. whoa. It was my turn to sleep with him.......so needless to say - I didn't need any blankets. It was like sleeping next to a campfire.

He's had fevers on and off for the last two days and might continue to have them until this round of chemo is complete. Apparently - Clofarabine kicks your arse.

Today was the first day that he didn't really feel like eating. We are hoping to keep as much weight on him as we can just so that he's got some strength to endure. Time for ice cream, french fries and chocolate. yum yum. Good for Hunter.......bad for mom and dad. We are sporting our hospital bellies FOR SURE. I'll get FAT for my kid - no questions asked. hee hee. Anything to support Hunter!!!!

They also did his Hickman dressing change last night and it was the first time EVER that I got a little queezy and had to sit down. To see a hole in Hunter's chest with a huge tube going in with the visual of chemo poison shooting through it just kinda threw me for a loop. I sincerely thought I was going to vomit. He was also on Morphine for the pain.............so.........it was just really sad seeing Hunter so out of it and still being such a trooper. I feel like my heart gets broken about 1-3 times a day.

Hunter's Hickman 2 days after surgery.



Hunter on Morphine while getting his dressing change.



This is when I lost it........it's not like I haven't seen it before????



This is the Clofarabine that is infused once a day along with another chemo by the name of Cytarabine.



A very wise and spiritual frog that we picked up along the way that's whispering words of encouragement into Hunter's ear.

Hoping for a MIRACLE

So Zen and I have decided not to crumble...............but.........having a hard time.

About 2 weeks ago......our biggest fear was the Bone Marrow Transplant. Well it's now changed.

The results from Hunter's Bone Marrow Aspirate came back and apparently the last round of chemo basically did nothing. He still has less than 3% Leukemia in his blood, but the doctors were hoping it would be zero percent after the last round of chemo. The Bone Marrow Transplant is now postponed 35 days due to the fact that there are still traces of disease in Hunter's body.

We've officially reached the point where Hunter's Leukemia has built up a resistance to the chemo's we've been using. It's revved up it's engine with it's shit eating grin and we now have to fight it harder and basically stab it in it's heart and drag it off.

Our only option now is to use an experimental chemo for AML patients called Clofarabine, for this one last round. The doctors here at Doernbecher's have done the research and a Bone Marrow Transplant is much more effective when the patient goes to transplant without ANY traces of disease. So we are going to go another 30 days and try this drug and hope it performs miracles.

We spent every last minute with Hunter over these last two weeks as we possibly could. We had a good mix of fresh air, lots of playing in the dirt and MUD, lots of smiles and lots of love, love, love.

Loaded Gun

Had a good cry last night.  Feels like it lasted for hours.  My eyes are still swollen and puffy as I type this morning.  Hunter is still asleep.

So we got the talk yesterday on the brutal truths of every possible scenario regarding the Bone Marrow Transplant.

Basically, Hunter is in for the hardest challenge of his life.  

And so are we.

The bottom line is that Hunter has a life threatening disease.  His AML Leukemia is extremely aggressive and has now survived all of the chemo that has been used to fight it.  Our only option is to go to transplant and replace his marrow and hope that his cancer doesn't return.  If his cancer does return after the transplant.........we've been told the options are pretty dismal.   (This was the "worst case" scenario Doctor speaking.  I politely asked him before the talk if he could make sure that the "best case" scenario Doctor show up to lay out all the truths and he politely told me that he'd bring both).  

Aside from the typical, horrid side effects from the chemo and the radiation, Hunter might also experience extreme mouth and stomach sores, fluid overload, severe abdominal pain, liver failure, kidney failure or heart failure. Oh and aside from all of that - it's never really over.

If and when Hunter survives all of this..........as he ages - we'll have to deal with all the other issues of the harsh treatments that he's receiving.  He could not experience puberty, (which can be brought on by meds apparently), his growth could be effected, he could have learning disabilities, he will most likely be sterile and won't be able to reproduce and he could have permanent organ damage that could cause serious issues from the huge doses of chemo and radiation that he has and will continue to be treated with.

hmmmmmm...................not so bad.  

We were told that since his disease is life threatening, the treatment itself is also life threatening.  After transplant, they've given him a 30-50% chance of being completely cured.

Oh and I can't forget the Bridges Team that we will have the pleasure of meeting.    I'm sure a lot of you haven't met them yet or even care to.  They are the "end of life" care team.  We didn't get to meet them yesterday, but apparently next Friday will be our meet and greet.  I've never wanted to NOT meet someone so much in my entire life.

Found the tiniest flower to smell.

I feel as if there is a loaded gun pointed right at my heart and it could go off anytime between now and the next 90 days.

I've never felt so lost.  It's almost as if I've been in a constant daze for the last 12 hours and I have to keep bringing myself out of it.  I'm forever choking back tears.  Every day I have to wake up and fight this terrible, frightening feeling in my gut.  Sometimes I wake up and just feel as if I'm dying.  

From this point on we'll be spending every breathing, waking moment with Hunter.  

Zen actually just made me laugh.  Wow.  What a nice feeling.  

Hunter is going to be fine.  Zen and I are going to be fine.  This is going to be the shittiest time of our lives............but we're deep in the trenches now and we have to get out.  We will get out. We've got big diggers............and we're ferocious.  

Hunter Stud

HUNTER LIP BALM

Hunter is now the Balm! Thanks to our dear friend Jennifer Gendron........Hunter now has his own Lip Balm. It's quite nice and goes on oooooh so smooth! A limited supply will soon be available and a donation of $25 will put a Hunter Balm in your hands! They are very cool and all the proceeds go to HUNTER!!!!!

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Run, run and ...................RUN!

A really cool Xray Technician here at Doernbecher's by the name of Michael Johnson found Hunter's blog after he came to Xray Hunter during his last treatment. He's running a marathon with the Team in Training in honor of Hunter and his information can be found below:

Michael Johnson's Team in Training Blog

Team in Training Fundraising Page

Below: Michael Johnson

Goooooooooooooo Mike!!!

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Every Monday Matters Interview with MommyCast

Matt Emerzian, a huge fan of Hunter's, was interviewed by MommyCast and mentions Hunter at the end of the segment. Good Stuff! Click here to hear the interview. (You can Fast Forward to the end to get to Hunter's part, but he does talk about good stuff, so the whole thing is worth a listen).

Zen and I with the Author's of "Every Monday Matters".

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Every Monday Matters Positive Healing

People are still continuing to leave well wishes and prayers and positive words up here for Hunter. Please feel free to go on his page and leave a little inspiration. I sincerely read them every day and shower them with Hunter on a daily basis!

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Hunter Shoe

The Hunter Shoe is extremely popular! Aldabella Scarpa, the Healing Hunter Shoe designers, have spread his shoe across the nation! His shoe is in 30 stores and can also be found in Canada and Puerto Rico.  Part of the proceeds of this shoe go to Hunter and his future!  Thanks to all who have purchased them!  They're great........your little one will loooooooove them!

They also have little girls shoes that are just absolutely darling. They've got a fantastic selection and their shoes are extremely well made and come with a huge amount of style! oh yeah........and all their shoes come in cute little hat boxes!  Nice touch.

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Hunter now has his OWN Facebook Page.

Click on the link below to become his friend and get his daily updates!

Hunter on Facebook

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Join the Healing Hunter Cause on Facebook.

Help us raise awareness about Bone Marrow Transplants 

and becoming a donor.

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I also started a community on Facebook for Moms Dealing with Childhood Cancers. I would love for it to be a meeting place to exchange stories, gather information and to just get some helpful tips on how to basically survive such a traumatic experience. Please contribute or forward to anyone who you think might benefit!

Click here to join!

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Here we are below getting desperate for hospital entertainment.

We also now dance on the tables for fun. We haven't gotten in trouble yet.





He also takes all of his calls now from the sink and that's also where he prefers to drink his juice. He's becoming extremely high maintenance when we have our stays at the hospital.  But reeeeeeeaaaaaallllly enjoyable!



Oh yeah.........and we have also realized why Hunter has been such a spaz lately.

After he chugs his juice, he chugs coffee grounds..................nice.  We just read that caffeine is no good for people with cancer.  Another thing to cut out of Hunter's diet.  hee hee.