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

July 22

Over the course of the last week, really the entire summer, I’ve proudly written of Garrett’s tenacious resolve and warrior courage to take the fight to the enemy in this battle for his health.  Any casual observer should be able to recognize the firm commitment this young man has shown, even when others were wavering.  He lost his summer, more or less, and instead of doing what kids should do in the summer months, he’s had to fight.  Well, tonight the proverbial white elephant in the room showed his head.

At least I know why I didn’t rest last night.  Last night I had to run home to take care of a few things.  I didn’t sleep well.  Call it what you will, but daddies have an intuition.  I’m not taking anything away from mothers, who have an instinctive intellect far beyond that of most mortal men.  That’s why they make such good detectives.  They can “receive a vibe” from a room full of evangelists (or car full of kids) and sniff out the rapscallion before their male counterparts know a crime has been committed.  It’s just what moms do.  But dads, they know when something is wrong with their kids, too.  I was unfortunately right when something told me Garrett’s last biopsy was not going to be good.  Last night was more of the same, but I couldn’t put my finger on it.

As we watched baseball and bull riding tonight, Garrett suddenly became very quiet and soft, and curled up close to me with tears in his eyes.  He then asked me what happens if this round of treatment doesn’t work.  Without acknowledging the white elephant any more than I will here, he shot one across its bow by admitting he’s scared.  He said “daddy, I’m scared and I just don’t know what will happen if we don’t get it this time.”  Adding to his apprehension is that fact that although his symptoms have been minor in comparison, he is having some which include discomfort, joint pain, and heartburn and is developing hypertension.  His blood pressure and heart rate are sure higher than we want.  They tell us it’s not surprising because these can be resulting from the harsh medications he’s getting in the chemo. Still, it’s concerning.

We know that his immune system is highly compromised now.  We can deal with that.  We know he’s going to puff up some and get flushed.  We know he’s extra sensitive to heat, because if it.  We can deal with those.  What we don’t know yet, and he finally acknowledged, is what happens if this doesn’t kill the T cells causing the rejection.  It’s one of those questions a daddy can’t answer.  So I wiped his tears and hid my own as his mom and I prayed with and over him.  That’s the point of this post.  He saw a boy today who is waiting for a heart.  He doesn’t want to be that boy again.

Please focus your prayers for Garrett’s continued courage in the face of this faceless enemy.  His bravery and steadfast resolve has truly carried me this time.  I thought it was my job to pick him up, but when we got the call this time, his momma and I felt the rug get yanked out from under us.  We hadn’t recovered from the first campaign this spring, only to get notified that our little cowboy was going to have to wade into battle again. Garrett’s attitude has picked me up.  He’s kept me strong.  It’s my turn again.

Life isn’t fair, but we aren’t asking for fair.  We only ask for the strength and wisdom to stand tall and recognize the grace of our Precious Jesus as He wraps us in His merciful arms, carrying us through this trial.

After this round of treatments, we’re back to that time welding process of waiting for the next biopsy and the “news.”  That time moves like pond water and will surely be heavy for him to carry.  He can do it.  I’ll walk every step with him.  But your prayers for him will help him stay strong emotionally during the next few months.  So thank you for all you’ve sent up so far and for all those you’re about to.  I know they work.

The only answer I could think to give him tonight after we prayed was this……We can handle the “if this”  because we know we’ll be focused on “then that.”  If this happens, then that is our goal or our celebration.

God bless you all.

JD

July 21, 2012 ---- Phil 4:13

We were given a really special gift tonight!  Garrett got to leave the hospital and sleep in a real bed at his aunt's place for the night.  Because he’s been handling the treatments better than expected, they are placing us on a work release program.  We have to be back bright and early in the morning and if we stay out of trouble throughout the day and do what we’re told, we can leave again tomorrow night.  We’ll repeat this process over the course of the next week.  Then we’ll take a break and actually get to go back HOME.  We’ll have to come up a few times a week for a 6-8 weeks with another biopsy scheduled down the road.

The ATG infusion is the one that made Garrett so incredibly sick a few years ago.  We ended up in the emergency room in the middle of the night because of it.  But a few years, better meds ahead of time, a few pounds and some more progress later, the only complaints he’s had so far is an upset stomach, lethargy, flushed face and a few aches and pains.  Not nearly enough for him to want to go back and sleep in a hospital bed.  To see the pure joy in his face being able to get away, even for a night, is incredible.  I need to get back to work soon if he continues to do relatively well on this chemo course, but for now will keep my promise to the family to stay here step by step with them at least for a few more days to make sure.  I was gone one time before when he got sick in the middle of the night and Garrett cried out for me all night.  It was very hard on them all.  I want to be pretty sure he's not going to relapse while I'm gone.

A down side to this little respite is that that his immune system is severely compromised again because of the ATG and IVIG, so the less time he can spend in a germ filled hospital, the better.  He can’t go to ball parks or stores or even church, but he can retreat to a real house with baseball on t.v.   That’s a huge plus!  Even starting school is in question right now, but we’ll make a plan that will help keep him from getting too far behind. Right now, I just monitor his vital signs frequently and keep him as comfortable as we can.

So far there are no new signs of antibody rejection, which indicates the earlier spring treatments did some good.  Even Garrett made the comment that we’d be in real trouble if they hadn’t found the rejection in April and softened the enemy attack.  God has a plan and if we’d just stay out of His way, He’ll work it to perfection.

We’ve survived the day, complete in the blanket of safety born of the Blood of the Savior and we are blessed.  Tomorrow, we’ll again wrap ourselves in the Armor of God and wade back into the fight, comforted by the love of friends and family.

Many thanks for all the prayers, calls and visits.  Your love helps fuel Garrett’s tenacity to win this battle.  No war was ever won without plenty of support from home.

I’ll continue to update here every day until we’re back in Falcon.  Please know we keep you all in our prayers as well, ever grateful for you.

God bless,

Phil 4:13  "I can do all things through Him who gives me strength"