......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 throw 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.

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.

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.

The 5th Round Recovery

We've now been in the hospital this round for almost three weeks. Hunter has officially finished his chemo and has crashed at his zero mark. He had 104 fevers for about 4 days and they ended at the perfect time. Since they have not continued over the weekend, that means we don't have to do another Cat Scan. Woo HOO!!! Less radiation for our kid! The other good news is that his pic-line is NOT infected, which is another thing that could have been causing the fevers. They would have had to remove it and then stick him with a needle every time to draw blood, which is about 6-10 times a week. He is continuing his antibiotic routine with two big bacteria fighters and they've also placed him on an anti-fungal. He'll continue these for possibly the next seven days. The doctor came in today and said plan on about two more weeks at the hospital. Almost done!!!!

Hunter getting iced down at 104 degrees. The ice packs are under the towels. He doesn't seem to mind when he's an inferno.





Love to all XoXo