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.

.....our hearts are broken

It's taken me a couple of days to get up the courage to write. I was hoping to never, ever have to type these words.

Hunter's cancer is back.

We checked into Doernbechers on Monday afternoon for his pneumonia hoping to be out of the hospital within a week. Hunter having a relapse was low on the list of concerns since he had just had a check-up on December 11th and came back all clear of any sort of relapse. But since the antibiotics did not seem to be doing the trick with the pneumonia, they decided to draw labs and check his cell counts for any kind of abnormal activity. When the blood test results came back, his cell activity was showing signs of something going on at the bone marrow level. It was then that a relapse was moved closer to the top of the list. It was still not confirmed until they put him under and did a Bone Marrow Aspirate. After research was done, they found that 45% of his bone marrow had been infected with Leukemia. It was invading his little body.......again.

In the last three days, Hunter has had blood drawn 15 times, has had his antibiotics switched 6 times, had one spinal tap and is getting another tomorrow, had two chest Xrays and 1 stomach Xray, had an echocardiogram, a Bone Marrow Aspirate and a Picc Line placed in his upper right arm. Wow. Rough couple of days and not going home any time soon.

While Hunter was having all of that done, Zen and I sat by his side in shock and devastation and cried and cried and cried. The tears wouldn't stop and the pain just kept getting deeper and deeper. I personally have felt sick to my stomach for the last 72 hours and my body has been on the verge of collapsing several times. My head is numb and my mind is not working too well and all I want to do is beat the shit out of something.

His precious, little, innocent body has been through so much and the thought of having to do that all over again is terrifying. Not only are we back to square one, but this next time around is going to be so much harder and so much more difficult on so many levels.

The bottom line is that Hunter is not going to be able to survive without a Bone Marrow Transplant.

He gets Chemo injected into his spine tomorrow morning and will start his first round of Chemo shortly after. The goal is to get him into remission to get his body ready for the transplant. The Bone Marrow Transplant is a risky procedure and still does not guarantee that his body will be cancer free. And we were told that his chances of survival are 56 percent.

Because of Hunter's genetic make-up, finding a donor is going to one of the hardest parts. They'll go on a worldwide search that consists of 11 million donors. If no match is found there, they will then move on to cord blood options. Tons of our family and friends have offered to be tested to see if they are a match. We'll know more details as to how to become a donor in the next few days. A great place to find out more information is up on www.marrow.org - full of good stuff and you can see what Hunter is up against.

He's a strong kid and I'm positive he is going to fight like hell. He's a true champ.

I personally need to wrap my head around what lies before us and charge on. Today was a little easier and I'm sure tomorrow will be even better. He's such an amazing child and the thought of him having to go through any more pain just absolutely kills me. I know we have to be strong and positive and trudge on......so I guess we will do just that.

Hunter when we were admitted on Monday.



Getting a routine Echocardiogram while watching "Cars".



Chest Xray in the room at 3am.



Hunter going through chest therapy to loosen up the fluid in his lungs and chest.



On the way to surgery.




Going into surgery after being sedated.



Hunter after surgery.



The long walk back to the room.



Apparently we'll be here at Doernbechers for the next 4-6 months. Several people have asked for the address with the floor and room number. The address is Doernbecher Children's Hospital, 3550 SW US Veterans Hospital Road, Portland, OR 97239. We are on the 10th floor, however, our room will change a time or two - so just put to the attention of Hunter Thawley, 10 South.

Thanks so much to everyone who has already called or written in showing their love and support. We need it now more than ever. We are frightened and unsure of what our future has in store for us, but Zen and I have rallied to pull it together for Hunter's sake. We are about to challenge a beast and we've got both arms swingin'.

Much, much love to EVERYONE.