Our little love is dying........

and it's happening right before our very eyes.

It's the most horrific torture we've ever had to face and we feel as if we are in a very, very sad hell right now. I, personally, can't seem to get a grasp on the pain. It's so completely unbearable and it's cutting so deep right now........every waking moment I am hurting and aching and in just plain agony. It's like constantly being punched in the stomach with steel fists. Our heads feel as if they've been slammed with a wrecking ball for the last 21 days. And our hearts are being stomped on with absolutely no mercy. I am so, so sad for Hunter. I am devastated and crushed that his beautiful life is brutally ending like this...........I honestly believed he was going to make it. I truly, truly did. I didn't think for a second that he wasn't going to champion his way through this and come out on top with an amazing victory. I am in shock. I am stunned. I am completely numb and I can't seem to think straight on most days. I sit on the floor in the shower and sob and just let the water wash away all my tears. I cry when I am pouring coffee, I cry when I look at his beautiful face, I cry before we go to sleep, and I cry when we wake up. Our life is so sad right now and I don't see how we are expected to recover from this. I feel as if we will be spiritually and emotionally wrecked for years to come, if not for the rest of our life.

We are not sleeping too well. Between handling Hunter's needs, battling our daily sadness and continuing to try to enjoy every moment that he is awake.........sleep doesn't seem to come into play. Whenever we do fall asleep.........Hunter enters all of our dreams. Sometimes he's healthy, most times he's sick. The other night in my sleep, we somehow had his precious little body and soul tucked away tight in one of his Lightning Mcqueen suitcases that he always carries around. We dropped it off a bridge into a beautiful waterfall and the immediate silence was deafening. I screamed and cried and fell to my knees and wanted him back so desperately. It was so completely horrifying and final..........amazingly unbearable and so terribly, terribly tragic.

Hunter, due to round the clock pain meds and just plain being exhausted, seems to sleep a good bit these days, which is what leaves us plenty of time for crying. This last week, he seemed to take a turn for the worse and we've just found out today that he has a pretty severe pneumonia . We've been pumping his body up with herbs and fresh vegetable juices in addition to all his other meds trying desperately to keep his cancer at bay. But it's just too strong. We've managed to get the cancerous cells that have invaded his blood stream down a little - but his body is clearly under attack. He feels his body deteriorating and gets extremely upset when he tries to get up or walk or play. The cancer has taken so much from him...........it's taken so much from US.

Many people who have been through losing a child with cancer have told us to brace ourselves. It's an unbelievable journey and something that we'll carry with us for all of our days to come. The suffering will never be forgotten and the pain will never subside. Zen and I are holding on to each other with everything we've got and are too afraid to let one another go........fearing one of us will fall.........and never get back up.

Many other amazing people have offered to take some of our pain away - if it was at all possible........and I swear to god....I wish they could. Some days the pain and heartache are so incredibly heavy.....I feel as if I can't breathe, let alone get up and try to put one foot in front of the other. My feet feel like bricks.

Hunter is our sunshine. He is our beautiful shining star that beams and brightens every single one of our days. He's our little love that we have held on a pedestal now for 3 years and we are so proud of him and how he's handled what he's had to endure. We're not ready to let go...........we won't ever be.........we don't want to and we are holding on to him right now with all of our might. Sadly enough, whoever it is - is going to have to forcefully, yet gracefully, pry him out of our arms when that dreadful moment comes.

We love you baby.

Hunter's Start to Recovery

(Day 72 Post Transplant)

So here we are.......

weird.

Life has been very different over the last 30 days. Zen and I went through all sorts of stuff this last month and I think it's been a little bit of a reality-brick in the face. I will throw in, real quick, right now that today and yesterday were great days......so I think we are officially out of the deep funk - but whooooooooosh......we dealt with a somewhat harsh bit of reality coming home from the hospital after being there for the last 8 months and having to adjust to life again - with our life situation being far from normal.

Hunter is our main focus. As soon as he wakes up, he's greeted with smiles and lots of lovin' and a thorough visual check-up, usually from both mom and dad, to see how he's feeling. He's usually connected still to his IV fluids that we are running at home, but it's easily transported all over the house. We start off in the kitchen with a choice of breakfast items and will pretty much make whatever it is that he'll say "yes" too. It's such a treat to see him eating again.......we'll cook anything and everything just to see him cram something into his tiny little pie hole. He is still experiencing some graft vs. host in his gut and upper stomach, so his diet choices are somewhat limited - but he's eating a pretty good variety of some super yummy stuff. His taste buds seem to be quite refined. And before, during and after he's eating, dad and I are also busy plunging 10 morning meds into his "nose hose". After that, we pretty much try to go on with the rest of our day with meds again at 4pm and then again at 10pm.

He is no longer puking and spewing from his bottom, and that ALONE is a huge relief. That was not going to well. When we were originally released from the hospital after our 104 day stay, Hunter was not doing that great. He was stable, but not himself, very low energy and not wanting to eat or drink or play. All he did was lay in bed and sleep. He barely moved and it was super depressing. We had clinic twice that week and he was checking out somewhat "ok" on that Monday and by that Friday - they checked us in. Hunter's condition had worsened and his fluids, foods and meds were not getting absorbed by his body because of his graft vs. host. So we had to immediately check back into the hospital and switch Hunter back to IV meds, as opposed to oral meds, get him on a bunch of fluids and give his gut a rest.

Definitely felt as if we were in the twilight zone. Felt a little dazed. Felt very saddened by Hunter's condition. Frustrated to be back in the hospital, bummed that we lost the pregnancy, and yadda, yadda, yadda.....it just plain sucked.

Hunter laying still and not moving for about 7 days. So sad and so worried. We were glad to be home at the time.............but not really. Can't say it was that enjoyable.

After about 9 days of hospital stay - Hunter was swinging back around and feeling much, much better. Hence......Zen and I are swinging around and feeling much, much better. His gut has improved and he has started to act a little more normal again and is wanting to start participating in some other activities.

We are now back home AGAIN and we've been here for about 10 days. We go to the hospital for clinic about 2-3 times a week and this week we are also starting physical therapy. They do a blood test in clinic every time to check his blood counts as well as other levels of meds in his system, and then we discuss his progress and make any appropriate changes to his daily regimen.

He's not really walking at all and he actually just crawled for the first time in a month on Monday. He crawled for about 10 minutes and then didn't crawl again until today for about another 10 minutes. His poor little leg muscles have just deteriorated.......we've got lots of rebuilding to do.

He is verbalizing a lot more so it's been super nice seeing his little personality come out. We are just so in love with him and sincerely can't ever imagine a life without him. He makes us smile so big every single day and we are just absolutely tickled to wake up with him every single morning. We are hoping and begging and wishing upon every star that we'll be able to keep him for the rest of our lives.

Celebrating Hunter's "clean" marrow in our Iron Hunter TShirts. That was another great day. His bone marrow results came back 100% clean of any cancer. Hunter was too busy to celebrate. He apparently had some more emails to get out on the iPhone.



Hunter full-on with no hair, no eyebrows and no eye lashes. He'd make a cool KoJack.



These are our famous hospital wagon rides. Sometimes Hunter is connected to his IV pole, but still insists on going out - so dad figured out a way to rig the wagon to the pole and.......around......and around we went.



This particular day, Hunter wanted to wear his Lightning McQueen baseball hat as well as his Lightning McQueen helmet. He obviously thinks he looks pretty cool.



Another wagon ride at home. This kid is all about the wagon.



Hunter shedding his snake layer. This was the graft vs. host on his skin all over his entire body. Wow. What a process.



Starting to feel a little better..........and look a little better. We even got a smile one day. Geez.......poor little buddy.

Hunter sporting this season's "Nose Hose". He wears it well.

Me and Bean at his last check-up.



Hunter Crawling!!!!!



This is a poorly lathered-up-with-sunscreen Hunter. hee hee. That stuff was soooooo potent and sticky.....it didn't come off. Seriously. Because of his cancer, he is now no longer a sun baby. His skin should pretty much not see the sun for the rest of his life due to it's extreme sensitivity from the radiation and the chemo. But, if he does get exposed to the sun, he should be in SPF 1000.......pretty thick stuff and we have to buy it from Mars.



The view from our back porch...........an amazing place to heal Hunter........and ourselves.

Healing Hunter Buffalo Fundraiser

Hunter Zen Thawley was diagnosed with AML Leukemia at 14 months. He is now almost 3 and has had to battle this beast for the last 18 months and is now finally coming out of the dark! He just received his Bone Marrow Transplant on June 15th and now has a new "life" that is anxiously awaiting to be lived.

After his transplant, Hunter's family is faced with a huge financial burden in order to provide all that he needs to continue his fight. One of the toughest hurdles has been jumped, however he has a long road to recovery.

Hunter has thousands of supporters all over the world and an event is being held in Buffalo in Hunter's honor to bring some of these supporters together to help celebrate his life and his miraculous achievements.

Please help us by joining us the evening of July 24th at 6pm at the Evergreen Conference Center. The cost of admission is a $25 donation........and it's well worth it!

Your $25 donation will include:

Food!

Drinks!

Live Entertainment!

A silent auction with AMAZING auction items!
(Including items from Hollywood Hair Stylist Chaz Dean, Topo Ranch, Aldabella Scarpa, DAKINE......)

100% of donations will go directly to Hunter's family.

Please join us in celebrating this little warrior who has touched the hearts of so many. You can continue to follow his journey at www.healinghunter.com

CLICK HERE FOR INVITATION

Iron Hunter T-Shirt Project

People all over the world, from Iceland to Belgium to Australia to the United States are supporting Hunter. Join the cause and help us continue Hunter's fight! A $30 donation will reserve an Iron Hunter T-Shirt. Please send an email to Lenore@zentodd.com, text, comment or a Facebook message with your size and we'll contact you to confirm your order!

Some of Hunter's Participating Sponsors

Chaz Dean, Topo Ranch, Aldabella Scarpa, DAKINE, AJ Grand Prix,
Mr. Pizza, Fat Man Pizza, .......

Entertainment at the fundraiser provided by Wakos

If you'd like to participate as a Healing Hunter Sponsor or donate an item to the Silent Auction, please send an email to Lenore@Zentodd.com, text, comment or Facebook message with your information and we'll contact you soon!

Hunter and family truly thank everyone for all of the love and continued support.

The Beast within......

Hunter's life is on the line.

We received devastating news last friday at 5pm. The unusual cell activity that was going on in Hunter's blood is in fact the Leukemia. It has moved in at a rapid pace and has a hold on our little boy and is not letting go. We've had to look this beast in the face every day for the last 19 months and it's now come down to yet another battle. And the winner of this one gets Hunter's life. We are fighting like raging monsters and I almost feel as if I'm going insane. The emotions that have traveled through my body these last 7 days are ones that I've never experienced in my entire life. It's maddening, it's horrific, it's soooo, soooo sad..............and it's killing my heart.

He hasn't eaten for almost 8 days, his lower left portion of his lung has filled with fluid. His face and entire body are swollen and puffy and he won't move or play with his toys or even smile. He's had a fever of 105 for almost 5 days.

He's on a constant drip of morphine, he is back on oxygen, he's constantly getting transfused with red blood cells and platelets and they've also got him on TPN to feed him through his IV.

So basically, after the 2nd round of chemo, Hunter's Bone Marrow had about 3% Leukemia. We tried the experimental chemo, Clofarabine, for the 3rd round hoping to get rid of all traces of disease before transplant. Well......................not only did it NOT get rid of the cancer, but Zen often sadly jokes and claims that the Clofarabine acted as a cancer fertilizer. Hunter's Bone Marrow is now more than 95% Leukemic and the disease has taken over his body.

We were actually given the option of going home and making Hunter's last few days, weeks, months as comfortable as possible. They send you off with some oral chemo's, some morphine and a nice swift kick in the ass.

Needless to say.....................................................we didn't take that option.

We CAN'T take that option.

We won't accept that option.

This last week has been unbearable. Zen and I are barely making it - but we are somehow finding the last bit of hope to use to smile in Hunter's face when he's looking to us for comfort.

We've opted to try one more round of chemo knowing that the damage of the chemo treatment - could take Hunter's life. He now needs to make it through this round and then make it through another intense round of chemo, radiation and then the actual transplant. For those that know the chemo lingo, this last round consisted of 7 inter-lapping days of chemo - 1 day of AraC aka Cytarabine, 4 days of High Dose AraC aka High Dose Cytarabine, 4 days of Mitoxantrone and a final day of Gemtuzumab. Very intense and can be extremely toxic and harmful to his organs. We've taken special precautions and have ordered additional tests to keep Hunter's organs on track.

We'll do another Marrow Aspirate after this next round and if there is any more than 25% Leukemia in his Marrow..............it's time for another "life discussion". Even as it stands now............if we are lucky enough to make it to transplant........Hunter's chances for survival are 10 percent, which makes the chances of him relapsing after transplant - 90 percent.

We've consulted with another father of a little boy with AML by the name of Jaymun and he's been a huge help as far as assisting us in prolonging Hunter's life. His son Jaymun has also had an amazing battle with this disease and was also sent home to wait out the last few days of his life. Jaymun is still alive and is fighting this disease like a champ. His story can be followed on his site - Jaymun's Journey.

We are now going to try some herbs along with the traditional chemo's that are being recommended to us by the doctors. Everything gets cleared through the doctors and pharmacists............and we are desperately hoping it all makes a difference and brings Hunter's cancer down to a manageable level.

We are at a loss for words. We are angry and confused and devastated and are feeling cheated like never before. It's an incredibly, painful heartache that does not go away. I feel sick to my stomach and I constantly have anxiety and fear traveling throughout my whole body. The sounds of Hunter suffering will echo in my ears forever...............

A very sad daddy holding on to Hunter for dear life.



Getting ready for his Cat Scan. Swollen and sad with a shiner on his left eye.





Snuggling with my bean.



Getting ready for Versed - the happy juice. Makes him stay still and not panic during the procedure.



Happy juice taking affect.



Going in for the Cat Scan.



One last giggle now that the Cat Scan is over.



Doing a chest Xray to locate the fluid in his lung. Hunter was sooooo not happy to have to get out of bed for this.



Getting ready for his Echocardiogram to check the status of his heart before we started the last round of chemo.



This is the chemo Mitoxantrone. It's electric blue and is as potent as it looks. Would not want to mix that in a cocktail. You'd be drunk AND stupid.



Chemo kickin' his butt.



One of Hunter's 105 degree fevers.



Sneaking in a smooch.



Hunter and dad.



Getting ready for more chemo. Not particularly happy about it. I think he's trying to hide. Don't blame him.



Zen and I smiling the night before we got the devastating news. Haven't smiled like that since.

.....how much strength does it really take??

I am so sorry for starting another blog being sad. I swear we've been really great and super positive the last few weeks. But Zen and I were given some information in passing yesterday as a slight concern over some blood results of Hunter's that had come back. It wasn't THAT big of a worry.........but, just something that the doctors found that they were looking at more closely. Well.........one day and (4) 104 degree fevers later.......it's becoming a HUGE concern.

I continue to be amazed at how much pain we have to constantly endure. It just keeps getting more and more intense. Every time we feel as if we are getting closer to the end - some other terrifying virus, or fungus moves on in and starts messing with our already fragile world.

So that's the better of the two options of what could be causing Hunter's fevers - a virus or a fungus.

The other is the Leukemia coming back at full force starting to take over Hunter's body for the THIRD time.

The doctors will let us know the results sometime in the next 12-24 hours.

Nothing like waiting.

His spirits definitely seemed lower today and he's not eating much. His appetite has been really wonderful the last few days.....so to see a switch now is a little puzzling. He's not wanting to get down and run and he's being very clingy. He's never clingy unless he really doesn't fell well or something is bothering him.



I can't say I've ever felt this sad or this worried or this sick in my entire life. I've had some good crys..........but today, it was as if my whole body was pouring out of my eyes and it just wouldn't stop. My mind is seriously tangled.

Is this when the fight or flight instinct kicks in? Because we've been fighting and fighting and f 'in fighting and I feel as if we keep getting these unfair blows that Hunter doesn't deserve. And no matter how hard we fight...........it's ultimately not in our hands. Sometimes I feel as if we're just swingin' at ghosts and there's no way to hit them........and I'm starting to get really angry.

It's such a horrifying fear when your child's life is put on the line - again and again and again.......and again. It puts me into full on panic mode and it's a HUGE effort to consistently stay calm and figure out how to handle the day after day news that is increasingly becoming more and more traumatic.

That's my baby. I have never loved something so wholeheartedly in my entire life. He's my love.

I know that there are positive outcomes and that people survive AML Leukemia. I get more and more emails and messages everyday on how there is ONE more survivor out there that was in Hunter's position at some time or another......and fought like hell and is now living and breathing and enjoying the rays of sunshine that everyone's meant to enjoy.

So seriously............c'mon.

Hunter's had 8 rounds of chemo and should be getting ready to receive one more with the addition of radiation and gracefully move on to his Bone Marrow Transplant. That's enough. He shouldn't have to suffer an ADDITIONAL round of chemo or MORE antibiotics or MORE antifungals or whatever the hell is going on in his body right now. We've put in our time and we'd like to go home now. Thanks for playing.

I'm truly screaming right now at the top of my lungs.

We will fight for as long as we need to fight.

We will survive the best way we know how...............

And we will continue to let Hunter know that he's a champion like no other. He's brought us to our knees and we applaud him and his spirit and his amazing desire to live.

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.