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

Memorial Day 2013

Memorial Day seemed the perfect time to update you all on Garrett’s progress.  The reason it’s perfect is due to the fact that on this day we honor and remember those men and women who have laid their very lives on the alter of freedom in order that you and I may live a more peaceful life.  It reminds me that we live in the greatest country in the world, and in a Nation STILL under God, no matter what some in Washington may say.  It reminds me that because of these freedoms and our way of life, we have opportunities and access to the best medical care anywhere.

So as many families remember the loss of their loved ones, I get to hold mine and love him even more.  Make no mistake about it.  We are still in a fight.  Something is inside Garrett trying to kill him, but we will prevail.  We accept nothing less than victory and we will carry the shield of warriors as we wrap ourselves in the Armor of God.  

Garrett’s had a really good week, all things considered.  He had four, almost back-to-back treatments last week but had very little nasty side effects.  Sunday was particularly rough, but I think it has more to do with him having too much fun the day before.  He spent a few hours at our cousin’s place and probably over did it.  That’s a good thing, really.  He was feeling so good that he forgot he’s still in a fight and his body is trying to heal at the same time.  It just wore him down.  Monday was much better.  Emotionally he has his ups and downs, just wanting to be a “normal” kid.

As he gets feeling better and life is slowing down now, we’ve had too much time to think about things.  Without feeling sorry for ourselves, we're beginning to accept that the “norm” we’ve been praying for will probably never come.  This rejection promises us that the life we’re living is most likely always going to be our “norm.”  I found it pretty tough to deal with last week, but am coming around as I write this.  

I’d been praying and hoping that some day we could only look to the future and know that the bad stuff was behind us.  That we could rebuild financially and buy another home, a nice home, and the kids could continue to grow up with the same opportunities as most of their peers.  For some reason, that doesn’t seem to be in the cards and so we are coming to grips with it and will do what we can to give our kids the very best life we’re able.

This week begins yet another round of treatments but there’s light at the end of the tunnel.  Only a few more weeks of this routine then Garrett gets a month off before biopsy surgery.  Then we will know how successful we’ve been.

Hug your kids tonight and say prayers with them for the troops around the world who place themselves in harm’s way for you and I.

God bless you all.

JD

May 16, 2013

Today’s update is brought to you by the word “norovirus.”  :-)

Sometimes it’s hard to come up with a new blog entry when we really just want to post positive, feel good information.  From time to time though, we have to wait a few days after we hit a bump or two to put ink on paper at the top of the hill, not the bottom.  That’s what happened this week.  That’s why this is so tardy.  It just took a little longer this time to climb to the top, that’s all.

Last Sunday was Mother’s Day.  It’s a day where mommies normally get to be pampered and lavished for being the one person who packed us around in their tummies and on their hip, wiped both ends of our leaky bodies, fixed our boo-boos, mended our broken hearts, patched our clothes, defended our honor, ate cold meals for years and did it all on four hours sleep a night.    Mother’s Day is the one day of the year when we collectively decide that our moms get to sleep in, at least until the first dish breaks.  It’s the one day where they have to clean up only after we’ve already done a poor job of it, but they smile because this time the mess was made out of the efforts of love, instead of selfishness.  It’s a day where they get to spend time watching the fruits of their labor play and make over them with jelly kisses and crayon hearts.

Mother’s Day is the true celebration of life.  Think about it.  It happens in the spring when God reminds the world that new life makes everything better.  It shouldn’t be complicated by fears and tears….but this one was.  It really started Thursday when Jessi came down with the norovirus, which is a really antagonistic and nasty little bug that’s responsible for over 60% of hospital virus quarantines in the past few years.  Its sickened thousands and killed hundreds…and we got it.  Somehow we picked it up at Children’s, where there’s an outbreak.  Jessi got it first.  Then I came down with it and several days later we’re still not completely over it.  On Sunday, Kathy got up quietly and went to Church alone.  She wanted her family to rest and she needed to be alone with God.  There she could quietly weep and beg him to heal her boy.   The reality that something inside your child is trying to kill him can suddenly sneak up and kick you….hard.   

Just when we thought we’d gotten past it, the norovirus or something like it hit Garrett yesterday.  It was pretty spooky because he cannot afford any bugs right now.  He needs all his strength to for the fight he’s already in.  He was a very sick kid yesterday after pheresis.  Now Kathy has it today, but Garrett’s on the mend.  As for Sunday, we still tried to make the day special for her, recognizing the incredible blessings that are ours.  I think her real Mother’s Day will be after Garrett’s July biopsy comes back PERFECT!  That’s the goal and anything less than victory is unacceptable.

After a few more days of treatment this week we’ll head back to Denver soon for three more days.   Tomorrow is the 1^st Annual Douglas Brigham Foundation Gala event in Pennsylvania.  Jessi and I were supposed to be there, but for obvious reasons we cannot.  Doug was a powerful force in our lives.  He and Garrett shared a very special bond, born of warriors’ hearts.  We lost Doug suddenly in a helicopter crash last October.  He was like a brother to me and one of the most giving people I’ve ever known.  In his honor and in keeping with his love of helping others, his incredible wife and friends have started a foundation in his name to help the families of 1^st responders with medical bills.  I wish I could be there in person, but rest assured we are there in spirit.  Love ya, Doug B!

They say when it rains…it pours.  We’ll continue to rest when we can; knowing our all loving Father has things under control and our job is just to ride the storm with courage for Him.   We all know the adage that it takes a good rain to make the flowers bloom, so for now we’ll just Cowboy Up under a bigger umbrella until this passes.

As you hit your knees tonight, please also remember a little 7 year old boy who was kicked in the throat by a horse yesterday.  He needs warriors to pray for him and his family.     Thank you.