Jaymun's Journey

........and what a journey it was.

Such a sweet, beautiful, little soul that will live in mine and Zen's and Hunter's hearts forever.

We've been following his courageous story and applauding all of his efforts, as well as his parents, for some time now. We are very, very, very saddened to hear of the news of Jaymun's passing and have still yet to recover.

Jaymun's father has been a huge and integral part in figuring out and managing Hunter's herbal regimen. We can only hope to continue to be guided by his knowledge and all of his amazing accomplishments in keeping Jaymun's cancer under control and keeping his son alive for much, much longer then the doctors every thought was possible. Truly remarkable.

Our deepest love and sympathy and warmest wishes filled with strength and peace and comfort are being sent to his family.

Jaymun......may you rest without pain, may you rest without fear, may you rest with all the warmth and cuddles and snuggles that hugged you so tightly when you were with us. You made such a difference in our lives........and you will never be forgotten.

www.jaymun.com

Happiness granted........& happiness taketh away

(109 days Post Transplant)

We found out in clinic on Wed. that they detected a Trisomy 21 cell in Hunter's blood work. They've told us that it could be an active cancer cell.......it could not be. They apparently only found 1........but, unfortunately, that's all it takes. We'll test him again in another month, and apparently the doctors are hoping that his new immune system takes care of it and terminates it on its own.

Sooooooooo not too bad.....just a months worth of stress & terrible heartaches and a constant fighting back of the mental demons that seem to be getting harder and harder to keep further away from the forefront of our minds.

So here's the deal - the Trisomy 21 genetic marker that Hunter has been spotted with is actually the down syndrome chromosone that is prevalent in most down syndrome children. Hunter doesn't carry this cell make-up throughout his entire body.......but his CANCER cells DO. So, in the past, whenever they've spotted the Trisomy 21 cell.............the cancer was usually piggy backing. It's very unusual and another characteristic that makes Hunter's AML Leukemia unique.

Needless to say..........Zen and I were once again devastated and spent most of Wednesday and Thursday confused, sad, randomly crying.......and just plain out of words. I feel as if there are a thousand needles stabbing at my heart on a pretty consistent basis, and those needles are speeding up and getting sharper every time Hunter says "mom", or "daddy" or laughs or shows us something cool or looks at us..........pretty much any interaction that I have with Hunter is slightly hurting right now and it's such a sad, sad, maddening state of mind to have to constantly continue to get out of.

For now we have to continue to focus on that little love of ours and enjoy every last bit of him. We completely realize that. Zen and I keep reminding one another of this simple act and definitely assist each other when one of us spots the other zoning out and about to crash and burn. It's pretty recognizable in our faces now when we are thinking about our life and our son and why we have to fight so hard to keep him alive and how truly unfair this all really is.

We will go to clinic twice next week and like they normally do, they'll draw blood and run labs and look for any additional unusual activity going on. We spoke to one of his doctors before the weekend and she reassured us that THEY are NOT freaking out yet. They feel as if they need to keep a VERY close eye on it, but that one cell just wasn't enough to feel as if Hunter is about to go into a full-on relapse. It is actually common for one or two to be spotted in post bone marrow transplant patients, but in Hunter's case......because of his history and how his cancer presents itself............it could be the devil.

Hunter going in for his Bone Marrow Aspirate, obviously already sedated. It was day 98 post transplant and it was actually on his birthday.........geez.......not such a fun birthday.



Zen and I waiting outside the procedure room waiting to pick him up.



Waiting anxiously for him to wake up.



Off we go..........just another day in the life of Hunter Zen Thawley.

Hunter's Transformation

Hunter 1 month old.

A true treasure.

6 months old.

14 months old......freshly diagnosed with AML Leukemia in December of 2007. This was one of his first smiles after being in the hospital for about 2 months.

and believe me......it was hard to get.

1st round of chemo.

Went with the mohawk after his hair started

falling out on the pillows.

3rd round of chemo, handling everything like a champ.

4th round of chemo

5th round of chemo........sometimes not so fun.

This was a really hard round.

In full remission after 5 rounds of chemo

and 9 months in the hospital.

Hunter 2 years old.

Obviously feeling pretty cool.

Enjoying life being cancer free.

Hunter right before he got his pneumonia.....

shortly after, he was diagnosed with his AML Relapse in January of 2009.

Hunter's cancer had returned

after 6 months of being in remission.

1st round of chemo...........

here we go all over again.

Feeling pretty good after 1st round.

Right after the 2nd round of chemo.....

there were still traces of cancer in his marrow, so the doctors advised that we do another round to try to remove all of the remaining leukemia.

This is right after the 3rd round of chemo, the experimental Clofarabine..............

.....it didn't do a thing and the leukemia almost killed him.

The transplant was postponed........and the possibility

of now even making it to transplant was slim to none.

We did another intense round of chemo

with hope of saving Hunter's life.

Pretty sad and scary times.

But so far it was the right decision.........we were on our way back to transplant.

Transplant day........and happy to be there.

On his way to healing.....

Cat scan of his chest to check for a possible virus due to his low immune system.

Short bump in the road with severe Graft vs. Host disease in his gut, upper stomach and skin.

Another horrible side effect of the Bone Marrow Transplant that could have and can still take Hunter's life.

Kicked that and was on his way again to living a healthy life.

Even though he is finished with his transplant.......we still get constant infusions of certain medicines, platelets, red blood, calcium.........whatever his body is lacking during this whole process.......you name it......there's a supplement.

This was us two weeks ago rushing to the emergency room

with swollen cheeks and a face bleed

that wouldn't stop. Turns out he only needed platelets.

Thank goodness he recovers so nicely..........

this was last week on the morning of his birthday party.

Happy as a clam to still be alive and turning 3 after 2 years of fighting.

So..........almost a full 2 years later, Hunter finally had his Bone Marrow Transplant. And all he had to do to get there was 9 rounds of chemo, a whole butt-load of bone marrow aspirates and biopsies, tons of x-rays and numerous cat scans, 5 picc-line surgeries and 2 broviac surgeries, a bronchoscopy once or twice, a colonoscopy, pneumonia, a bunch of bone scans, mri's, echocardiograms, graft vs. host disease, cedif, myositis, typlitis, hmmmmmm...........what else..................oh yeah........and a whole hell of a lot of tears, heartache, deep.......deep seeded pain and fear...........and life changing emotions that will forever change the way we approach life, appreciate life and live life. We can't help but to sometimes feel as if we are on borrowed time with Hunter and that all of our sweat and tears and accomplishments can be taken away at any given moment. Just like that. So we live life now with Hunter's best interests at heart. And however long he has on this planet..........we are going to make sure that he has the best possible life imagined. I can't think of anyone who deserves it more.

Celebration of Life

Hunter is turning 3 years old and we've decided to celebrate his life and enjoy the company of our good friends and all of those that have loved, supported, cheered on and shared our journey over the last two years.

His birthday is September 21st, but we'll be celebrating it on the 19th of September at our home from the hours of 3pm to 9pm. We've posted the invite and have sent information through Facebook, but I know that there are lots of people whose information we don't have. So if you are reading the blog and would like to attend, please send me your information to lenore@zentodd.com or contact me through Facebook and I will forward you the event specifics.

Thanks for all of the love and well wishes and wonderful emails and messages that continue to shine on us every single day. We are slowly getting caught up on life and are actually getting settled into our home and have somewhat of a routine now........so it's not so chaotic and scary.

Hunter is smiling now more than ever and his spirits seem high and full of life. He's got quite the sense of humor and he's quite "grown up" for his short 3 years of being alive.........man.........what a life he's had.

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.

Dad is back

Hi guys,

It's dad and I've been away from the blog for a very long time. It's about time I say thank you.

First, of all let me say thank you to Lenore. What a woman. I love her dearly and I'm always impressed by her ability to communicate our journey. As devastating as this disease is - it hasn't attacked our relationship. We continue to draw strength from each other - day and night. We both acknowledge the power of positive thoughts and even when things are hardly positive we keep pulling each other out of the mental blackness that surrounds us. I couldn't do this without you - thank you my love.

I also want to thank the many people that have helped us over the past two years. This is the journey of a life time and not one to go alone. Thank you for all the moral support. Thank you to everyone that have donated money or time. We would be in a very different space if not for you. Every single last person. Thank you for buying a t-shirt or a chapstick. Thank you for donating gifts for our fundraisers. Thank you to all the people that we have never met but have heard our story and then contributed to our lives in some way. The kindness and compassion never ceases to amaze me. I had no idea people could be so compassionate. I am humbled by you.

Extra special thanks to the Kobbe's for being the kindest and most generous people I have ever met. Now that we have been home for 4 or 5 days we have had the pleasure of waking up and going to bed - to the most beautiful healing view of Oregon's wine country. It's one in a million and so are you both. Thank you - thank you- thank you:-)

As I mentioned before we are home. After 104 days straight at the hospital they released us late last week. Out of the past 7 months we have been home about a total of 3 weeks. So going back to the hospital almost every day for check ups is a small price to pay for a little freedom. Hunter is stable with no fevers but his energy is low and he seems to be without his usually strong life force. It has us deeply concerned. He lays in bed all day and still isn't eating. We feed him by NG Tube ( I call it the nose hose) and we give him a concoction of liquid drugs thru the hose three times a day. I think we are administering somewhere between 9-12 life saving drugs a total of 20-30 times per day. It's a full time job. Then we have to get food and water into him - again thru the hose. Too much fluids at one time cause him to vomit so we are constantly balancing between too much and not enough. It's rough and somewhat discouraging to watch him so low. However, we have to be thankful that the fevers are gone and especially that his bone marrow came back free from cancer. It was only a week or two ago when we were thinking the worst was happening and the terror of losing Hunter crept into our minds and destroyed us until his marrow results came back free of cancer. That was a huge relief - when we got the wonderful news - Lenore and I held each other and sobbed for 30 minutes absolutely overcome with joy. What a ride. LOL.

Living with FEAR

(Day 36 Post Transplant)

We snuck Hunter out at 11pm when all the visitors were gone and we could get some fresh air. It was the first time he had been outside in 97 days.

So I am not going to lie.

Zen and I are terrified.

As tough as we come across and as positive as we seem...........we are constantly having to deal with the fact that Hunter's Leukemia might return, (since it has now invaded his body 3 times).

I know we are supposed to think and deal with "one day at a time", and I know we can only enjoy today because we really have no idea what tomorrow is going to bring. BUT, we look at Hunter and treasure his sweet face and his wonderful being so much, that we can't help but try to be prepared for what terrible beast might be lurking around the corner. Not to mention the docs have basically said that no matter what and all that we've been through..........there's a 90% chance that his cancer is coming back.

Hunter truly is doing fantastic. He does have a serious rash all over his body.......but it's not necessarily considered a bad thing, yet. It might be Graft vs. Host or it could be something viral. If it is Graft vs. Host........that's a good thing as long as it stays within the boundaries of being able to be controlled. If it's viral.....not as good, but apparently treatable.

This is sooooooooooo by far the life I would NOT have chosen to live. It's truly like constantly living in fear. It's like having something grab a hold of you and dictate your days and your mental being and you have to fight like hell to "stay in the moment" and not let it get the best of you. It's the hardest life I could have ever imagined. It's the most difficult frame of mind I've ever had to deal with. And granted...........Zen and I are both very strong individuals.............but, for god's sake.........I think we are starting to realize our limits. Our hearts can only be broken so many times.

On top of all this pressure of wanting to keep Hunter alive for as long as possible.......Zen and I were actually 3 months pregnant. Sadly enough......we lost the pregnancy this weekend and are once again - truly devastated. I think, right now, we are at a loss for words and just have NO IDEA why all of this is happening to us. We now fully realize that there are NEVER any guarantees in life and you just have to pick yourself up and just keep on going. Zen's mom kindly said as she was hugging me that life is not going to beat us and it's not going to bring us down. We can...and we will.....beat it - we just have to keep looking forward and appreciate what we DO have. We have Hunter, he is alive and doing exceptionally well and Zen and I have each other. Which is honestly two of the best things we've got - but I have to tell ya..............we are bummin' and we just want to go HOME and enjoy our lives and live a normal life like everyone else does. I think it's time. And I think we are ready.

We are tired of being sad........we are tired of being angry.....we are emotionally, physically, and mentally exhausted and we are tired of living this particular life. It's now been almost two years of dealing with Hunter's illness and we are finally seeing the light at the end of the tunnel......and I can honestly say that we are running like mad trying to get there as soon as possible.

Life can be quite questionable and wonderful and cruel. Friendships have shown to be true and false and ever so appreciated. True and honest love has been proven to be strength and light and comfort and all encompassing safety. I've never had so much to deal with all at one time. I've never called upon so many friends and strangers for the energy and power to keep on going.......and I've never realized so much, until now, that life is something to be embraced and fulfilled and treasured for as long as you've been given the honor to do so.

We will deal with what we have to deal with - we will continue to support each other for as long as one another is called upon and we will fight through and learn from these life lessons and hopefully come out stronger and tougher and brighter than the most powerful star. I am so, so sad and I feel as if my spirit is broken............but it heals and gets bandaged up every time I look at Hunter's beautiful face and with every hug and kiss that Zen lays upon my skin.......I couldn't ask for much more.

Zen made the comment and reminded me that "Happiness is a state of mind"..................you bet it is.

***************************

I wrote this post two days ago and just came back to it to add some photographs. Just in two shorts days................we were on our way to go home - but now Hunter is spiking 104 degree fevers and he's just not himself again. We were getting so used to seeing him spunk around the room and wanting to get out of bed and do his thing...........but today, there was a substantial difference in his behavior. He's not talking too much, he's not taking his meds again and is grumpy and hot and fed up. Not the Hunter we are used to. They are doing an emergency Bone Marrow check tomorrow to make sure that his marrow is still clean, (which by the way - on Friday we were told that it was. Not to mention we were also told that 100% of his marrow was the donors marrow), so that's FANTASTIC. However, the Leukemia can still return......and it moves in fast.

Hunter getting yet another Cat Scan to check on his liver. Apparently it was the Voriconazole medication that seems to have been the culprit of his liver acting up. The doctors have since switched his anti-fungal and now he's doing much better.



This is Hunter's morning dose of meds - 8 all together. He then gets three more in the afternoon and then the same morning dose at nighttime. He's toooootally over it.



This is his horrible skin rash that attacked his whole body. Could still be viral, but leaning more towards the Graft vs. Host now. We'll see if his fevers subside and the increase in steroids makes it any better.



This is Hunter's hospital room door................where we've been living inside now for about 100 days. Thank goodness for pictures.......it reminds us which room is ours.......hee hee.



Hunter and dad on a walk around the halls. Good nighttime fun.

What we get ourselves into once we get back in the room.





Watching YouTube..........up close and personal.