Colonoscopy..........OUCH......

(Day 24 Post Transplant)

Hunter watching Cookie Monster on the iPhone.



Cookie Monster no longer impressing.



Hunter had his very first Colonoscopy yesterday. Good fun.

The docs were concerned that he might be experiencing a little of the Graft vs. Host disease in his gut based on his "poop" output and some tummy & chest pain. Nothing major and nothing too serious and in fact it's quite common post transplant. It's treated with steroids and most likely just goes away. The doctor that performed the procedure turned over some really wonderful photos of Hunter's insides..........a few sides of him that I have never seen before. Didn't think there were any left??? So now we have just a few more wonderful pics for Hunter's baby book. I'll put those right next to his little foot prints and his little ringlet of hair...............that has now fallen out twice. But good news is that peach fuzz has officially been spotted on his head...so YAY.....his curls will be back soon!

Along with his colonoscopy, they also did a marrow check. His ANC has been above 500 now for 5 days in a row......so that means that his engraftment is complete. Now the marrow procedure will check to see how much has engrafted and will let us know exactly what is going on within the marrow, for example what cells it's making on it's own and the rough percentage of each as far as white cells, red cells and platelets, and to make sure that so far, all of the leukemia is gone.

They put him to sleep around 12:30pm to perform the colonoscopy and marrow and he woke up at about 3pm rearing to go. You'd never know something was just up his "yoo hoo", because he was instantly demanding his cars collection and wanted his YouTube and was wanting to get down off his bed to go play by the windowsill. Of course............nothing phases him anymore.

We should have preliminary results back from both procedures no later than Friday.

He is still throwing up a good bit, can't really keep any of his oral meds down......which is kinda not good. Might have to consider an NG Tube to put up his nose that goes down to his belly to be able to administer all of the meds we are going to have to give him once we go home. Other than that, he's sleeping pretty sound, his days are pretty good and he seems really happy and active for the most part.

Daddy has been banished from the hospital. He had to go to LA for business over this last weekend and he ended up coming back sick. I picked him up from the airport late Monday night and brought him back to the hospital and the nurse immediately sent him home. He's now back at the house and no one will go near him.....not even grandma. He's referred to himself as "the leper". He's quite sad and lonely and feels really bummed that he can't be with Hunter. Yesterday's procedures were the first ones where dad was not there. We miss him terribly and are hoping he gets better soon. He's not aloud back in the hospital until he is 100% better.......so hopefully he bounces back as quickly as Hunter does!

Well just as I'm finishing typing..........the doc came in and confirmed that Hunter does indeed have Graft vs. Host going on in his gut as well as his upper stomach. That explains the pain and discomfort he's been having sometimes throughout the day and night. Steroids start immediately and run the course for 10 days. They feel as if we should see some major improvements by then. A few nurses cheered when they heard about the Graft vs. Host.........another true sign that the Bone Marrow Transplant has worked! WOOO HOOO.......never thought I'd be cheering for ick in the gut...........but YAAAAAYYYYYY!!!!!!!!

Hunter still standing and walking on his tippy toes.



In between iPhone and YouTube time.........he actually does get some reading in...Dr. Seuss is a favorite.



These are his rosy cheecks where the Graft vs. Host is suspect.



The rash on his legs right above his knees which is another indication of Graft vs. Host. It looks like his butt.......but I swear it isn't!!



On our way, traveling in cush cush, to the colonoscopy. If he only knew what was coming....he might not be so relaxed!



About to go under for his procedure. Doesn't seem to care about much as long as he has Strip Weathers in one hand and Wingo on the iPhone.

Engrafting like a CHAMP

(20 Days Post Transplant)

Hunter going in to his Cat Scan with dad's iPhone. That thing has SAVED us and has allowed Hunter to enjoy most of his procedures. iPhone mixed in with versed makes for a very happy Hunter.



So we've now lived in the hospital with Hunter for the last 81 days .......STRAIGHT. We came in Easter week - expecting to do a quick round of chemo and then head to transplant. Obviously....we've taken the longer route. We've been in and out since January 12th, when Hunter first relapsed, with only being home in between about 3 weeks. So basically, it's now been 7 months and we are truly almost on our way out.

Hunter's counts are finally coming up, which means that his "new" marrow is starting to engraft and make its own red cells, whites cells and platelets. He is still getting transfused with platelets almost daily.....but now, it's likely we will be able to transfuse less starting this upcoming week.

His infection in his lungs seems to be less of a worry. His Xray was followed up with a cat scan and then a bronchoscopy on Thursday of last week. They also did a respiratory viral panel from his mouth and nose to try to locate the source of infection and the cause of his fevers. Needless to say.....everything has come back negative and the only thing that was switched was one of his antifungals. And low and behold - the fevers have subsided. He no longer needs oxygen and the need for morphine has also dropped.

The signs of his "new" marrow taking over have been a rash on his face, rash on his arms and his ANC count today being at 610. Anything over 500 for 3 days in a row means engraftment is taking place. YAY!!!!!!! That's another HUGE step to recovery and another nice indication that the Bone Marrow Transplant so far, has been a success.

He continues to be on Vancomycin & Meropenem, (antibiotics), Ambisome, (anti-fungal), Ursodiol,(which protects his liver), Cellcept, (which helps with his Graft vs. Host disease), Cyclosporine, (which is an anti-rejection medicine), and prevacid, (which helps with heartburn). He has also been getting Lasix the last few days to help with the draining of all of the fluid in his body. Quite an extensive list to keep him going and safe.

We are considered "likely" to go home when he starts to eat and drink on his own, when he can take all of the above medications that are still needed orally instead of through his IV, when he no longer needs blood transfusions, and when there are no more signs of fevers or infections. So we could actually be home in a couple of weeks!

His nightly blood draws continue to check for any signs of Leukemia returning......so we get the print out every morning, hoping....with a huge knot in our heart and stomach.....that we don't see any results of "atypical" cells. NOT a good sign when we see those and something that we never want to see ever again.

Our journey is not nearly over, but it is looking like we will hopefully be one set of parents that gets to leave the hospital with their child alive and well. And believe me..........we feel exceptionally grateful for that and will forever count our blessings.

Me and Bean waiting for the Cat Scan.





Hunter before Versed.



Hunter after Versed.



Hunter's lung mystery.



Slowly going off to sleep getting ready for his Bronchoscopy.



Daddy saying goodbye.



Waking up in recovery.

......let the Games begin

(16 Days Post Transplant)

sooooo............here we go.............

Constant fevers, runny nose, tummy pain, back on morphine, back on oxygen................and of course.........gotta through in a virus, which they found this morning with a lovely 5am Xray of his chest. Great nights sleep........yeah right.

He's still crashed out in his bed. I'm sure he's feeling pretty crappy. He's moaning and groaning and not moving around a whole bit. It's now 10:30am and he's been sleeping for about 11 hours. Guess I'd rather be sleeping as well if my body had all of this going on.

The doctors pretty much have him covered with meds.......so they won't really add any more. Might switch a couple of them up, but for the most part - he's on all the heavy hitters they've got. They apparently just need to swing a little harder!

He still remains in good spirits in between feeling like crap so maybe by late afternoon, he'll feel like throwing down some smiles. I hope so...........I look forward to them on a daily basis.

Our wake-up call at 5am. Nothing like room service. They could have at least brought in some breakfast or coffee.



Hunter in the tub 2 nights ago. One of his better moments.



Hunter in between fevers. Watching "Cars" on his iPhone. Oops, I mean dad's iPhone.



Just steals my heart.

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's 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.

"Up" for Anything and Everything......

A favorite pic of Hunter walking along the beaches of Australia.
One Shadow, One Reflection...........2 Souls.....2 Lives.

(13 Days Post Transplant)

I am terribly sorry for not updating sooner...........but I have to tell ya - Hunter has been sooooo much fun and was full of so much energy - that we were being very selfish with our time. We have enjoyed him thoroughly these last two weeks and have witnessed the little boy that we once had before his illness took him away.

We have had some minor ups and downs, but nothing too serious. He's thrown up blood twice, apparently due to low platelets. He thrown up yuck and phlegm in addition to that, due to some nausea. But the docs didn't seem to be too concerned. His poor little butt rash got worse then better, then worse and now it's better again. At one point his poor little rump was so raw he would scream in pain when we gently cleaned him, which causes him to still not be a fan of baths.....so it's a little bit of a struggle to get him into the tub every night.

He has still not eaten any food on his own. It's now been almost 2 months since he's really consumed anything solid. He continues to be fed TPN through his IV. However, he has maintained his weight - which is fantastic.

He's received platelets almost every single day since his transplant and red blood cells here and there. His "new" marrow is not settled and able to make them on their own yet.......so he'll continue to get them for about another 1-3 weeks.

He has started to walk with help from us....but for some reason - he won't put his entire foot onto the floor. He continues to walk on his tippy toes??? Could be some residual soreness from his myositis, could be the fact that he needs to rebuild that strength or he could just be scared. But he's getting physical therapy on a pretty consistent basis, so hopefully he'll be walking again on his own soon.

So far no other infections, no viruses, no toxicity and no organ failure. All good. However, he did start to get fevers three nights ago, (day +10 - post transplant) and they've continued up until this day. He is laying over in his bed next to me and his temperature is about 103 degrees. This could be signs of engraftment, (his "new" marrow taking over), could be the start of a virus or infection or could be the Leukemia. Most likely it's not the Leukemia. But it's never ruled out. If it is indeed the engraftment, the fevers are considered a good thing - but we are just left hanging in the wind until further things start to surface. Because he received a "cord blood" unit for his transplant, engrafting wasn't supposed to start to kick in until about the 3rd week out. Right now we are only on the 2nd week post transplant. So it's a little troubling - but we are trying to remain optimistic.

He has surprised all of the doctors with his performance since his week of radiation, when he was supposed to be going downhill.........Hunter just kept trudging uphill. He has done nothing but improve on a daily basis by leaps and bounds. So they've assumed that he was so "down" when we started the conditioning that he had nowhere else to go except UP.

So now.......once again......we sit and wait and lay by his side. We smooch his body from head to toe and comfort him to no end. He's up and about in between fevers still having a good time - so we enjoy that and entertain him as much as possible.

I went back through and reread my last 5 entries and wow......what an emotional bag of ups and downs. Three good days, one bad, two bad days, four good.......fear, excitement, anger, appreciation, anxiety, sadness.....what a ride. I am still amazed sometimes as I walk through the hospital halls that this is our life. That this is our fight.....that this is defining our livelihood. I feel at peace right now, but I am forever aware that it could change at the drop of a hat. We definitely have gained some very valuable "life" experience through all of this........and that's a good thing........because we still have an incredibly long way to go. Hunter's road to recovery is going to be the next 3 years to a lifetime. But - we are apparently "up" for it..................learned that from Hunter.

A Tribute to Zen

So I don't think Zen was ever expecting this turbulent whirlwind of fear and fate when he became a dad. In fact, I'm quite sure he wasn't. Like myself, he was pretty much expecting smooth sailing......going on lots of vacations.....playing in the park...... and lovin' on his son without him being connected to his overwhelming amount of "life tubes".

Well..........surprise...........fatherhood had something else in store for him.

Right out of the gate, Zen had to immediately show his son courage, he had to display an amazing amount of strength and show him how to fight a raging beast one step at a time, and he had to quickly let Hunter know that he was safe and sound and would do everything in his power to protect him and keep him out of harms way. He has, time and time again, fully embraced Hunter in his arms with sooooo much love and tenderness and you can tell that on this special day, he truly feels honored and forever thankful to have the opportunity to even celebrate Father's Day.

To give you some insight into Zen - he's a realist and his mind works very systematically and logically. He's extremely intelligent and retains more information then I could ever imagine. And, lucky for us, mixed in with all of those great robotic qualities is a human being full of a tremendous amount of love, compassion and genuine care and concern for his family. We're all that matters to him.

Insight into our relationship......between Zen and I, he's the one that will face the fact that we could lose Hunter before I will even let it enter into my mind. He'll allow himself to slightly mentally prepare for a future that might not be what we envisioned. Only to think about us and how we would best survive. He doesn't like, and prefers not to be blind sighted. I, on the other hand, will constantly push for the last hope and will remain somewhat in denial to NOT have to face the future that we might not want to envision. I guess that's how we balance each other out. We are truly the Yin and the Yang. We are interdependent in Hunter's world, and in our world, giving rise to each other and holding one another up in times of despair, devastation and unbearable heartache. I would not have survived this situation as well as I have if I did not have Zen.........and vice versa. We've applauded each others efforts on a daily basis and respect one another for the choices and decisions we have had to make regarding Hunter's life. Together we are the dark and the light.....the sun and the moon.....the brutal truth and the wishful hope......the complimentary opposites within our greater whole.

I must mention and give credit to Zen for a few things: One was the peanut incident. Most of you are already familiar with this.....not a fun time. It was the day Hunter was choking and gasping for air and was not able to breathe. And it didn't only happen once......it happened twice......three times.....and then the final fourth - which seemed like it lasted a lifetime. Instead of putting it in the hands of the doctors and fully relying on them and waiting for them to come in and assess the situation, Zen took matters into his own hands. He hit Hunter on his back with such force, force that I, as a mother, would probably not have done. I would imagine I would have gotten there eventually..........but I don't think it would have been my first instinct. Well, thank god for Zen. He didn't waste a moment......and in that situation......every moment mattered. Zen got the peanut out that was lodged in Hunter's throat on his last and final blow. Air rushed back into Hunter's lungs....and Hunter was, once again...........safe....and alive.

The second was knowing what combination of chemo's to try when Hunter's life was seriously on the line....again. We were about to lose him.......and he was slipping away right before our eyes. And I mean that literally. The Leukemia was killing him. His body had been taken over by his disease quite fiercely, and we were given the option of leaving the hospital to try to enjoy his last days of life in the comfort of our own home. I was not giving up, and I know I would have tried some form of treatment, but I am not sure if I would have pieced together the potent mix of drugs that Zen had suggested during our "Hunter life meeting". That's where it truly showed how he retains and processes information. He suggested the Cytarabine, Mitoxantrone and the Gemtuzumab. Whuuuuut?? I am very familiar with those..........but as we sat there sobbing, holding Hunter.....I can't say my mind would have worked that fast. I was already heading down memory lane with one foot out the door getting ready to scream and fight and claw our way out........somehow. Where as Zen, used his mind, and fought through the clouds of sadness to figure out how we could try one last thing to save Hunter's life. And so far.......it worked. Two for dad.......zero for death.

The third is the herbs. He's done mass amounts of research and has connected with another father to make sure that Hunter's life remains as safe as possible from this deadly disease once we leave the hospital. The herbs can keep Hunter's disease at bay if, in fact, it decides to come back. Unfortunately.......even with Hunter's bone marrow transplant - there's a 90% chance that his Leukemia will return. I'm not saying that we are back to believing and putting all our faith into numbers - but we are facing the fact that Hunter's Leukemia is the most aggressive one out there and it's got a fight in it much like ours. But for whatever reason - we now feel stronger and we are "one-up" on this beast and we are always going to try to stay one step, two steps, one huge leap ahead. His cancer is constantly lurking over our shoulders and we are going to run our asses off to make sure it doesn't pass us by and come after Hunter again. We'll keep him alive on mushroom & cur cumin sandwiches and green tea if we have to. Fine by us. We're ready and armed and have the power and intensity to guard our little man within our walls of love. Nothing is stronger and nothing will beat us.

So.........Happy Father's day my love. You've earned it, you deserve it and Hunter and I could not be more fortunate or more proud. You've saved Hunter's life time and time again as if it was your natural duty. You are a true warrior with which he learns from and we hold you up on a pedestal and stand by your side with love and devotion and the utmost respect. We look forward to spending a lifetime together with you and happily enjoying it as a family.....forever and ever and ever. We love you with all our hearts.

The new beginning......

Day 0 - TRANSPLANT DAY

Hunter's guardian angel blessing and protecting him. That's his "New Life" gleaming behind her.



So far..........the transplant has been a huge success. Hunter's body has been tolerating everything that's been thrown it's way, and he seems to be feeling really, reeeaaaallly great. He's got the cells in him now of a newborn.......so I guess, in a sense - yesterday, he was born again. The transplant itself was very quick and only ran over the course of about 30 minutes. We have seen some Bone Marrow Transplants online and have been told that the actual transplant is pretty anti-climatic......and that it was, so I feel as if we weren't too disappointed. But I did feel as if it would take a little bit longer??!! Hunter actually slept through the whole thing. Geez!

They shot him up with steroids before they began to prevent any kind of reaction. His nurse checked his vitals every 5 minutes for the first 15 minutes and then pretty much stayed for the rest of the time to make sure it all ran smoothly. It was very similar to a blood transfusion. They just hung the bag of cells from his IV poll and dripped them into his Broviac, which is his central line in his chest. Easy as pie.

The cells arrived a few days before at the hospital, frozen and stored in a preservative by the name of DMSO, (aka stiiiiinky, nasty, rotten oyster, smells like crap preservative). They freeze them in this simply because it does not crystalize like ice - so that prevents any kind of piercing of the bag or damage to the cells. That's a good thing. However, the room does quickly come to smell like rotten oysters and so did Hunter. We've been told that it only lasts a couple of days.

So now Hunter's blood type changes from A+ to O+ (O+ was the cord blood's - blood type), and his vaccinations that he has already had are no longer. Those vacated his body with his old marrow. He won't be able to get any new vaccinations for one year. And even then, there are only a few that his body will be able to start with. His food restrictions are pretty serious and he's limited to mostly things that are canned or cooked very thoroughly to prevent any bacteria or fungus from getting into his system. He is not supposed to eat anything from a bulk food section, (which we never really did anyway), no deli sliced meats or cheeses, (only things pre-packed), no fresh fruits or vegetables, (he can eat cooked veggies.......but they have to be cooked really, really well), no eating out at restaurants, no raw nuts, no tofu, no soft, bleu veined cheeses, no herbs, no sprouts, no poultry, no fish........on and on and on. We've also read that it's not good to light candles due to the fumes and toxins released in the air. No playing with other kids, no exposure to construction zones or areas with lots of dust. And more, on and on and on. So yes......he becomes the boy in the bubble.......who can eat nothing but canned soup. But hey.......who cares!!!!! He made it to transplant and so far he is alive and well!!

Hunter woke up about 2 hours after the transplant was complete and we were warned that he might wake up aggressive and grumpy and a little irritated due to the steroids. But........he didn't. He did demand his YouTube......Hunter's latest addiction, lots of cartoons and shorts, over and over and over. But after about 20 minutes - he was up and climbing around and dancing and singing. He was looking and feeling like a brand new baby!

So even though the transplant itself was anti-climatic...........the actual transfer of cells into Hunter's body will change his life forever.  Much like all of you have changed our lives forever. 

Prayer circles were formed, candles were lit, angels were summoned and chants were heard all around the world.............children were hugged tighter, people were loved longer, life was appreciated fuller............Hunter has and will continue to teach us all so much.  Love what you have, hold what you love and never, never, ever.........let someone tell you it can't be done.  Hunter continues to break all the rules and he will shine on like the warrior that he is and we will let him know throughout his entire life that he is an amazing human being and has brought such love and peace and joy and hope to so many.  And he doesn't even know it.

Me and Bean right before the Transplant.



This is his IV pole currently. We've been told that MANY things will be added to it in the next couple of weeks. It's already on overload if you ask me!



Hunter's new cells slowly dripping into his body.



Crashed out and snuggled the entire time.



Almost finished. Empty bag, just getting those last few cells. If you look closely you'll see the NMDP, (National Marrow Donor Program), listed on his bag. Thank you again for having, preserving and delivering Hunter's new life.



Hunter doing his Transplant Happy Dance, laying down!



Hunter wearing his iPhone hat. For whatever reason...........that cracks him up.



Our first family pic with the new Iron Hunter.



VIDEO OF HIS TRANSPLANT COMING SOON!