July 19*20

Well folks, we got through night one on this new leg of the journey in pretty good shape.  Garrett’s outlook has been remarkable, and I’m proud of his resolve.  He’s resting right now after a very long night.He’s a little more bummed today, because he’s tired and doesn’t  feel very good, but he’s still in the fight.  He’s sad that his baseball is put back even further now.  That’s what we did the night we found out he had to go back in.  We played catch, because we knew it would be a while before we could do that again.  Those precious moments are worth everything.  Cherish them.

The other night he told me he wanted to come up here and “kick some butt.”  Yesterday morning when I got him up, I asked him if he was ready to “go pick a fight?”  He was!  We did.  We had our initial face-to-face with the doctors and it was less stressful than anticipated.  They confirmed that this is not a new rejection, but a continuation of probably the same rejection from a couple of years ago.  They went after it pretty hard then and that’s when Garrett got so sick from the chemo.    The T-cells sorta festered until it showed its ugly head again this spring.  The treatments done then were admittedly less aggressive, but they were hoping it would do the trick.  Obviously it hasn’t, so were back in for another round with a more proven and insistent tactic.  The good news is that so far he doesn’t show any anti-body rejection, which means no plasma pheresis scheduled for now.

They performed a pic line procedure yesterday without any issues, and a couple hours later started a series of infusions consisting of 3 or 4 different drugs over the course of about 10 hours.  One of the meds, called ATG, is a really harsh drug that works pretty well to fight T-Cell rejection.  A few years ago he had an extremely bad serum reaction to it.  It was horrid!  We are hoping that doesn’t happen this time.  Last night he had a few of the symptoms, including joint pain, chest pain, elevated blood pressure and heart rate and a slight fever.  Today he’s been a little nauseated.  But if he makes it through the next few days without worse symptoms, he’ll probably be ok.  That would be a plus!

Jessi stayed right by Garrett’s side last night, refusing to leave him.  Kathy was able to go off campus and get some sleep and we’ll switch off tonight so it’ll be my turn.  There’s really very little rest in a hospital.  We’ve spent so many nights over the years trying to sleep in a chair and I’ve never quite mastered it.

The next week looks like this, as the plan goes:  10 hour infusions twice a day.  Blood work, echo’s, ekg’s, etc.   They give him medicines before the ATG and IVIG to help offset any reaction he might have.  They plan on hitting this hard.

Kathy is better today after a little sleep, which she surely needed.  This has been pretty hard on her emotionally.  She obviously canceled her bike ride this weekend, but those of you who donated for the ride, that money still goes to help the cardiac program.  The kids and I were really looking forward to a weekend in the mountains cheering on momma and relaxing, but it’ll have to wait. 

For now we are counting our blessings and ready to do what we have to do to win this fight.  Sometimes it feels like we don’t get much of a break but as soon as we start to feel sorry for ourselves, we see a child or family who are being wheeled into the ICU.  We’re only in the cardiac critical care unit.  We’ve got it made!  So please keep the prayers coming for our cowboy.  They are working and we promise not to weaken on this end.

More soon.  God bless you all.