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.

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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.

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 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.