Saddness has fallen on so many......

I can't really think of how to start this off. Everyone wants daily updates and it seems as if things are changing constantly. One minute he's fine and stable.......another he's desperately fighting for his life. His pneumonia is not going away and there is something in his body that is causing very severe fevers. He goes from 101 to 104 degrees on a regular basis, he's vomiting often and he's exceptionally weak and tired. He finished a 3-day round of chemo last week and I'm sure his beautiful brown curls are going to start falling out again shortly.

He's been on oxygen now for 8 days and he also has a feeding tube going in through one nostril all the way down to his stomach. They've given him morphine twice for the pain he's experiencing with everything going on in his body. Just in the last 5 minutes he was stabbed with a needle twice to try to place an IV for the Cat Scan contrast to go in to try to locate the site of infection. There are no more large veins in his body that are accessible. So now the CT will be done without contrast. It's not as informative without the contrast, but they don't want to wait any longer. The infection needs to be found.

My mind continues to race.........sometimes it slows down.......sometimes I feel as if it just melts. I miss his happy face and his smile terribly. I'd give anything just to see a glimpse of it again on a daily basis. I miss holding him in my arms without all of the tubes and wires connected to his body. It's hard to snuggle when every loving squeeze could possibly cause him pain. I miss feeling normal.

Zen and I are exhausted. We try to alternate sleeping with Hunter so that at least one of us can get a good nights sleep. However, it doesn't seem to matter who's sleeping with him or not. It's hard to sleep. Constant interruptions, lots of vital checks throughout the night and we both basically sleep with one eye open to make sure Hunter's as comfortable as possible and always has everything he needs.

I know we will get through this. However, it's going to be like scraping our already broken hearts across a field of hot, burning coals. The field is long and the battle is more intense then I could have ever imagined, but on the other side.......there is light.

We've received extremely encouraging emails from so many others that have already had a child go through a Bone Marrow Transplant. Our LA Oncologist is also very optimistic and sprinkled that much more hope on our cupcake of fear.

We want to thank EVERYONE for all of the love, support, prayers and beautiful messages that have been delivered to us. I honestly look forward to them every day and it's what allows me and gives me the strength to keep on going.

I'm so sad and it hurts so much.



Hunter going in for his second Spinal Tap, (aka Lumbar Puncture). They'll be injecting Chemo into his spine to prevent his spine from being infected with Leukemia. They gave him the "sleepy juice" so out like a light as dad lovingly sees him off.





The Chemo injector. Here is Hunter's IV pole that houses all of his antibiotics, chemotherapy, fluids and feeds. Pretty intense.







Getting an Ultrasound on his lung. Trying to see if there is a fluid sac of some sort that might also be restricting his breating.



Much more relaxed when it's done. Hence the crossed legs. All he needs now is a cigar.




Our hospital room. This is where we'll be for the next 5-6 months. Zen's over there watching football. He's pleased with the top notch accommodations here at Doernbechers.



Hunter also a big football fan. Seems to chill him out.



We were finally able to get a smile. Took a while........but we wouldn't stop til we got one. I've wrapped it up and stuck it in my pocket for the next rainy day.

.....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.