July 24

Coming to you from deep within the battle, where the troops are inspired ~

Yesterday was an interesting one.  We got a lot more information on where we’re at and what may be expected in the near future, and then last night brought a few more challenges.  
 
Most of Garrett’s transplant team was in the mountains over the weekend for the Cardiac Climbers fundraising bike ride, so yesterday was the first day we could find out how they feel things are going.  They’ve confirmed that while this is a bad rejection, it’s certainly not on the scale of what we dealt with in 2010.  But we need to find a way to finally get rid of those nasty T-cell lymphocytes that are attacking Garrett’s heart.  The echos are showing no new negative issues, which means we’re at least keeping it from getting worse.  His blood pressure and heart rate are still all over the map, but it's to be expected right now.

Garrett had a nice talk with his transplant coordinator (his nurse) and she put him at ease more than he’s been.  Most of what he's feeling is due to the treatments and she did say that if he has significant reaction to the chemo it will come over the next few nights.   We’re hoping that’s not the case, but at 330 this morning he was in extreme pain and tonight it's setting in again.  Last night it ran the full length of both legs.  We did what we could to ease the discomfort, but there’s only so much we could do.  He and I have watched a lot of baseball and rodeo in the wee hours over the years.  It helps keep his mind off of the pain.

This afternoon marked a big step in the treatment process.  He finished his last dose of ATG, which means no more chemo treatments for now.  They’ll leave the pic line in for another several days to be sure we don’t need it again and we’ll make daily trips to the hospital for a bit.  Then we’ll back off to a couple times a week and finally, we hope to bring him home by a week from Friday.  If all goes well, we’ll make the twice weekly trips for clinic and then in another 6 weeks after the medicines have had their time to do the work, another biopsy will be scheduled.  We don't know if he'll be able to start school on time yet.  The doctors said it will have to be a "game time" decision.  With his immune system challenged even more now, caution is a verb. 

Garrett remains strong and determined.  I’m so proud of him for the attitude he’s taking throughout this ordeal.  He’s lost his summer, lost baseball this year and spent a couple months away from home since April.  Yet he is happy most of the time and just wants to “kick its butt.”  His baby sister's birthday is tomorrow and all he could think about today was that his rejection has cast a shadow over "her day" so he directed me to buy her a book on horses.  If she can't be with her own, he wants her to have a substitute.

I was admittedly a little down the other day and was brought back to reality by an old high school friend who reminded me to listen to the Jimmy Valvano speech at the 1993 ESPY awards.  I’d heard it years ago but will keep it on my play list from now on.  If you’ve never heard it, treat yourself.    After listening to it myself again and feeling a little shame for temporarily not focusing on my many blessings, I had Garrett listen as well.  He smiled and gave me a thumbs up.

Jimmy V was a super hero in his attitude toward life and his battle with the cancer that eventually took him home.  He adopted an incredible personal philosophy for living that can enable an ordinary person to accomplish extraordinary things.  His enthusiasm for life, dreaming big, and working hard were the elements that allowed him to be successful.  That’s what we all need.  Big dreams, love of each other and this precious life of ours, and never giving up.  Jim Valvano once commented, “There are 86,400 seconds in a day. It’s up to you to decide what to do with them.”  He said “In a world where too many people simply sit on the side lines and watch their world as it happens, I plan to participate.  I am going to be involved in every second of every day of my life, and guide my own destiny.”  Touché, Jimmy.  Touché.

So that is what we plan to keep on doing.  We’re going to fight this battle with a smile, because to miss the fight would be to miss the opportunity to be victorious.

Saint James said to “Consider it all joy, my brothers, when you encounter various trials, for you know that the testing of your faith produces perseverance.”  Patience, Prudence and Perseverance.  Words to live by.

Joyously writing from the front lines,

JD