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.

May 8, 2013

Well we’re back in rainy ol’ Denver tonight.  Hard to cuss the moisture though, because we need it so badly.  Garrett’s had a pretty good week.  We finished the IV treatments at home just in time to come back up to Children’s hospital for more plasma treatments.  Although gets really tired, his spirits are good.  We’ve all been amazed at how well he’s been handling the treatments.   So much easier than last time so far. The picc lines are doing great and with the exception of a little bit of expected redness and itching, he’s had no problems so far.  As expected, he’s beginning to puff up a little bit, probably as a result of the methylpredinsolone.  The meds also make him really hungry so he grazes constantly.  He’s afraid he’s going to get “fat” and lose his baseball conditioning. 

This morning while he was hooked up to the plasma machine, I went ahead and donated platelets around the corner from him.  Kathy spent her time running back and forth checking on her boys.    If you’ve ever thought about donating, it’s a great way to give back.  Chemo and transplant patients need the platelets because of their weakened immune systems.

Dinger continues to wear something of his cousin Levi to every visit.  We lost Levi to cancer just a short time ago. and he always fought with a smile on his face.  Garrett tries to do the same….day in and day out.  I know Levi is proud of him just as we are.  He has some really good guardian angels watching over him in Levi, Noah and his “Uncle Dougie B.”  He thinks of and speaks of them often and draws strength from them.  Somehow I think my dad, who died just a couple of days after we were married, is also working hard to send him warrior strength that surges through his veins.

The outpouring of support we continue to receive blesses us immensely.  From food to baseball tickets to places to stay in Denver; Our church is allowing us to stay put for a while (which is huge so we don’t have to hunt a place to live right now); folks taking care of our animals while we’re gone, teachers who visit and my bosses and team taking up the slack and giving me the latitude to be with my family during this little trial……all of these gifts make these bumps so much easier to deal with.  You all know who you are and we thank you from the bottom of our hearts.

A very special gift came from Garrett’s little league today.  Last weekend, Garrett’s best friend - "his brother from another mother," put Garrett’s number, the #3, on his jersey in Dinger’s honor.  By today, the entire league of 13 year olds had done the same!  What a humbling experience for Dinger and all of us.  They’ve said they draw inspiration and courage from our cowboy warrior, and at home we often talk of and pray for courage and strength.  A web site we follow is called ‘Battle Ready’ and has daily meditations to prepare ourselves body, mind and spirit for the fight.  A recent post quoted Joshua, when God told us “Behold I command thee, take courage, and be strong. Fear not and be not dismayed: because the Lord thy God is with thee in all things whatsoever thou shalt go to.”  That's pretty clear!

With the encouragement we get from those who find Garrett’s journey an inspirational story, we will continue to find courage to glorify God in His perfect plan of which we are but a small part.  Garrett will lead the charge.

Be courageous!

A Night At Home - May 4, 2013

With a little trepidation that’s overshadowed by the pure joy of being home, we are in our own bedrooms tonight.  The last week lasted a year, but only took a few minutes.  We’ve been to this rodeo many times yet somehow it always seems like the first.

I’m really proud of my kids.  Jessi stayed by Garrett’s side and Dinger kept a great attitude.  His biggest fear after learning what the game plan was to be is the memories of the pain he went through three years ago.  Our Good Lord, though, has seen fit to grant him a bit of a reprieve, the extra courage to Cowboy Up again and do what has to be done.  He got through last night and the first 5 sessions of treatment without any real issues.  So they let us go home tonight!!! 

That little furlough is huge in our eyes.  Last time they wouldn’t let us go home for three months!  We always use ‘home’ as a gauge.  If they feel comfortable enough to let him sleep in his own bed, then we know they’re not concerned about any immediate catastrophic events.  We have a journey yet ahead of us, but at least the future is more encouraging today than two days ago.  We still have to be in Denver for two or three days each week for the next few months for the IVIG and photopheresis, but with the picc lines in place, they’re letting Kathy and I give Garrett the IV methylpredinsolone here.  We went through the training and take no chances with infection or contamination.  Round one at home tonight went without a hitch.  We use a saline flush, followed by the methylpredinsolone, followed by more saline flush, then a heparin flush.  We’ll do this a few times a day for the next week or so.  He’s also on some oral meds for the sinus infection and some other Rx’s to help prevent bad reactions to the chemo.

For the first few nights at home, Garrett will sleep with me.  Right now he lays next to me, deep into a hard earned slumber.  As I watch him breath, taking in the pure magic that is life, I find myself looking at the bandages surrounding his arms, protecting the picc lines.  How many times have I seen him wrapped up in some kind of medical packaging with tubes hanging out of him?  Hundreds?  I’m so grateful we can share these moments but I still hurt for him knowing that he has to go through this again.  He was less than five minutes old when he got the first IV in what would become a long string of painful memories.  There have been countless invasions to his body since that day, but he still drives on and Cowboys Up.  His glass is always half full.

I know he’s ok, but just the same I’ve set my alarm so I can get up and check on him a few times through the night, just to be sure.  He’s got about 15 inches of picc line in both arms, going up through his shoulder area and down into his heart.  This puts the medicine exactly where it needs to be and allows for a smooth transition when they run the photopheresis on him.  The tiny rubber tubing also keeps the harsh chemicals from burning his veins.  We’ve got to maintain a vigilant watch on them to keep out infection and keep them from being pulled out by accident.

Our Church family was really great when we got home tonight.  They brought a fantastic spaghetti supper to our door so Kathy wouldn’t have to cook tonight.  That little gesture means more than they know.  She was so beat from stress by the time we got home and that small act of kindness was greatly appreciated.

Jessi got a surprise, too.  She got to go to her best friend’s place tonight for a sleepover.   Tinker has been such a silent trooper with Garrett’s issues and hospitalizations that sometimes her needs get put on the back burner.  A lot of plans for the year have now been changed, but I’m committed to making sure her dreams are not pushed aside any more than absolutely necessary. We were supposed to work calves in tomorrow with friends, but our participation obviously had to be canceled.  We were also supposed to be hunting turkeys this weekend.  She really wants to get her first bird but we’ll have to put that off now for a bit.  But her “sister” Aleeyah’s folks came and got her so her whole weekend wasn’t lost.  They treat her as one of their own and we’re indebted to them.  She gets to hang with them for the weekend, ride horses and go to a rodeo on Sunday where the girls will get to chase barrels and bring home the prizes! 

The outpouring of selfless support, kindness and love through these bumpy trails over the years never ceases to amaze me.  With what I do for a living, sometimes I let the true heart of this great land get eclipsed by the degradation and decay placed on our society by a deafening few despicable miscreants.  Earlier this year I saw two of the most precious little lives snuffed out by pure evil.  The darkest recesses of my mind couldn’t have imagined the scene that will forever be burned into my mind.  But you all are among those who make me proud to I do what I do.  It takes warriors to fight evil, and we’re all called to be soldiers of the Cross.  In this story, Garrett and Jessi represent the pure hearts we battle to protect, you and I.  Thank you for showing the face of Christ in your lives; For Jessi and Garrett, and all those like them.  Kids deserve to be kids.

God bless,

JD

" And whoever receives one child such as this in my name receives me"

May 3, 2013

Well friends we’re mostly through day one, round one.  Sorry this is such a long post, but my phone’s been blowing up with folks wanting to know what is happening.  I’ll do my best to explain it.  It’s about 1130pm, Garrett and Jessi have both finally fallen asleep; Him in his hospital bed and Jessi in the recliner next to him.  She won’t leave his side.  Kathy is sleeping in a family sleep room across the hall and I now have a few quiet moments to jot a note or two. It's been a long several days, fighting the good fight.

Today was like drinking from a fire hose.  We got up at 0530 and headed to Denver.  Because of the storm, we got stuck in the parking lot called I-25.  When we finally made it to Children’s, we met with his transplant team and they told us what we are up against.  In 2010 when Garrett was admitted because he got sick from a very nasty rejection episode, our backs were against the wall.  We learned things about  B-cells, T-cells, auto-antibody rejection, acute rejection, chronic rejection, acute vascular or humeral rejection, OKT-3, IVIG, CD4-T cells, CD3, lymphocytes, fibrosis, mycophenolate, myocardial movement, imuran, immunosuppressant, chemotherapy, plasmapheresis......................the list goes on and on.  He was very sick.  We took a particularly aggressive approach to fighting the rejection and he got sick from the treatments.  Since then things have changed and we’re hopeful this time will be easier.

We had to go into the O.R. today to surgically implant picc lines.   A PICC (peripherally inserted central catheter) is a real long tube that goes directly into his heart.  Last time they had to be put in his neck.  Since then they’ve found that using the veins in the upper arms on older kids works better.  Because Garrett’s active and has been doing lots of pushups, his veins are big and open so it was a slam dunk.  He was extremely scared, though, and so they made an exception to the rule of the operating room and suited me up.  Because they did not use a general anesthetic, Garrett was awake.  His anxiety level was high, but he wanted me in there.  We’ve practice our ‘tactical breathing’ for years and today I was his coach.  He looked up at me and we talked our way through good breathing exercises while they put the lines in under a local.  It worked well and they were able to get both of them in easily.  The whole process only took about an hour.

Right now Garrett’s one hour into a six hour infusion treatment with IVIG.  He’s already had one round of photopheresis, which is similar to the plasmapheresis treatments three years ago when he had the last severe rejection issue.  It’s similar to dialysis and is basically a high-tech oil change that uses UV rays to bombard the lymphocytes.  That takes about three to four hours per treatment, then a two hour infusion of a steroid treatment, followed by the IVIG.  The IVIG blocks the antibody receptors on immune cells, leading to decreased damage by these cells. 

All of this is focused on T cell lymphocytes.  They’re a type of white blood cell.  We all have them but in Garrett’s case, he’s got a band of nasty little Al-Qaeda cells (that’s what he and I call them) and they’re trying to kill his heart.  The treatments are a form of chemo therapy designed for T cell lymphoma patients, but they’ve found it works to help heart transplant recipients fight rejection when they’re T cell driven.  Aside from a nasty little rash that broke out earlier tonight and has since dissipated, he’s comfortable.

The good news is that Garrett’s PRA (Panel Reactive Antibody) numbers are lower than three years ago.  That’s good!  A high PRA can cause immediate rejection of a transplanted heart, in spite of powerful anti-rejection medications available right now.  Last time we were fighting a high PRA and a zero reactive T cell score.  This time we’re fighting a lower PRA, with a higher T cell score.  Basically, he has an acute rejection caused by bad lymphocytes.  Follow so far?  Me neither.

He’s got to go through about 6 weeks of this.  In July, he’ll have another biopsy surgery to determine how successful we’ve been.  The emotional roller coaster ride has been pretty tough but he’s a remarkable young man who does not have an ounce of quit in him.  I wish we weren’t here right now, but feeling sorry for ourselves isn’t going to make it go away. 

Garrett’s pretty upset that his baseball season has been interrupted again, but he’s keeping a positive attitude and I’m proud of him. He constantly thinks about his cousins Levi and Noah and his Uncle Doug....they help motivate him to stay strong.  But taking baseball was a pretty hard blow.  He loves his sport so much and now can’t play for at least a couple of months, if all goes well.  By then his current league will be done, so hopefully he can get picked up by a summer club.  They’re more expensive but I think he’s earned it, don’t you?

All of these challenges we all face have glimmers of hope behind them if we look hard enough.  One email I received today reminded me of the beautiful passage in Romans Chapter 5.  It reminds us that there is glory in our suffering because we know that suffering produces perseverance; in perseverance, character; and in character, hope.  Hope is that magical term that gives us great expectations of wonderful days ahead.

We look so forward to those wonderful days ahead. Your support and prayers help more than we can express, and I'm very grateful.   We will never give up the fight.

God bless you all,

JD