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"

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.

July 7, 2013 - "They Get It"

Nothing makes a daddy more proud than when he knows his kids “get it.” 

This is the last “overdue” update until Garrett has his biopsy on July 16.  I just wanted to let everyone know how the past few months have gone for our not-so-little-anymore warrior.  It’s been a summer so far of challenges on this journey, but the rewards have been great as well.

After Dinger finished his final treatments at home and in the hospital back at the beginning of June, we settled in to try and spend some time enjoying the summer.  His strength, weight and color all quickly recovered and his body had a chance to purge itself from the poisons that are unfortunately a necessity in the battle against T-cell lymphocytes.  The only thing that didn’t come back as quickly as we’d hoped was his conditioning and stamina.  Garrett tired more frequently, which we believe is a combination of the rejection, the medicines and just being a teenager.

The High Plains Little League, which has always stood behind Garrett in his battles, offered him a dispensation to allow him to try out for All-Stars, even though he missed the required number of regular season games.  This made Garrett pretty excited and he wanted to try.  But after only a couple of days of practice, he realized that he’s just not back 100% yet.  This was pretty disappointing, but I’m proud that he is taking it in stride as best he can.  He’s still supporting the All-Stars by going to the games and some practices to watch.

We haven’t been able to spend much time yet doing “summer” things yet because of our late start with Garrett's rejection and the priority of trying find a place to live.  We're finding it's a little tougher than we thought to start over.  The Church though, has been fantastic in allowing us to continue our rental agreement here, but we really want our own home again someday.  I've also been working a lot with the fires that have ravaged our area and an exceptionally high violent crime rate this year. Jessi was hoping for at least some more rodeoing, but her horse "Superman" got sick and so that quashed her plans for a few months, unfortunately.

 

Back to the opening sentence.  Last week we were in Denver for Garrett’s last check up and blood work prior to the biopsy, which we pray will come back perfect.  We spotted a woman down on the street and stopped to help.  Because it’s Denver and you never know what may have happened, I had the family stay with the car until I was sure it was not the result of a criminal event.  Then everyone jumped into action.  While I assessed the woman and helped stabilize her, Kathy relayed info to 9-1-1.  Meanwhile, my kids were fantastic.  Jessi provided shade from the blazing sun and Garrett ran back to the car.  He came back with his “mushabelly” horse.  It’s a squishy stuffed horse doll that was given to him after his last transplant by some very good friends.  He used it to hold against his chest when he had to cough.  It also plays a very soothing phfphfphfphf…like a horse making a contented breath.  Since then, he's carried it everywhere when we travel.  Garrett gave it to put under the woman’s head to protect her from the street, then he pushed the sound button to calm her.

When the ambulance came and took her to the hospital, Garrett sent the doll with her.  He told me that it helped him over the past few years, so maybe now it’ll help her.  That’s what I mean when I say that my kids “get it.”  It’s like the time when Jessi was wheeling Garrett around the hospital during his last rejection.  He was plugged  into IV’s and had a mask on to protect him from airborne germs.  The kids spotted a little boy wrapped up in bandages from head to toe!  They stopped and pleaded with me to “let us do something for him.” 

I am truly blessed to have such incredible kids who always want to pay it forward.  We may not own any property anymore, but we possess something so much more precious…love of each other and fellow man.

More after the biopsy.  Blessings to all.

(p.s. - please keep our friends the Jensen's in your prayers.  They lost everything but memories in the fire and are starting all over....like so many others)

JD