September 30, 2010

Well, I promised an update as soon as we got word about the last test we were waiting for. The results of the PRA came in late this afternoon. Unfortunately, we got the wind knocked out of us a little today as the results weren’t what we had hoped and prayed for, but we’ve got to keep in mind the tremendous victory we had yesterday.

The up-side is that Garrett’s PRA is a little lower (89) than in June (96). The target range is around 25. So what does this all mean. Well, basically Garrett is out of immediate danger of general lymphocyte cell rejection and his body is not trying to kill his heart anymore. The problem with a high PRA is that is presents a different, increased potential risk of additional rejection than other cell-mediated rejection. A high PRA can cause immediate rejection of a new transplanted heart, in spite of powerful anti-rejection medications available right now. But since we’re already in to our 2nd year with this heart, I feel like we’re ahead of the game.

We’re staying positive and know that God has the Perfect Plan for Garrett. Because we’ve completely beaten the lymphocyte rejection now, we’re on top of the fight. What we have to do now is set our game plan to fight the PRA and get it considerably lower. This means he’ll most likely have to undergo more IVIG, Cellcept increase, prograf infusion and plasmapheresis again. In talking with the doctors today, we all feel that the family needs a little vacation to relax and we’ll set our battle plan when we return. I’m hopeful this doesn’t mean another relocation to Denver, but we’ll do whatever we have to do.

I don’t want anyone to be disheartened by this news. We are winning this battle! We knew this would be a long fight and we have to stay strong and continue to take the fight to the enemy! We need everyone to stay positive and continue to pray for complete healing. We’re not out of this. Not by a long shot.

We’ve already increased his daily medications and cellcept levels. Hopefully that will help prepare his body so if/when we do more treatment, it will be shorter than normal. It’s not uncommon for kids to have to undergo 6 plasmapheresis sessions (oil changes) in a two week period when their waiting for a transplant. We’ve only done two. We’re blessed.

Kathy and I have decided it’s best not to mention this to the kids right now. Garrett is on such a high by having a zero number from his cell biopsy, and feeling good about yourself is a great healer. It's been kind of a roller coaster to say the least and they need a break. When the time comes, we’ll handle it as we need to.

I just wanted to post this and let so many who are wondering know that this week was a victory in spite of the overall results. Remember, we didn’t backslide at all. The heart is about the same, the cell rejection is gone and the PRA is down, if even a little bit. Any victory is still a victory.

God has control. He gave us a huge win yesterday and we’re going to show anyone who wants to see, just how powerful His mighty love can be. Tonight as I give this all to Jesus, I just look forward to a few days of my kids being free from nightmares, fears and unknowns. They’ve earned it. I love my family so much. I wish I could make the rest go away, but that job belongs to the Perfect Physician. For now, I will keep trying to increase my own faith and remember what Jesus taught us "If you have faith as small as a mustard seed, you can say to this mulberry tree, 'Be uprooted and planted in the sea,' and it will obey you."

JD

VICTORY - September 29, 2010

"Finally, be strong in the Lord and in his mighty power. Put on the full armor of God so that you can take your stand against the devil's scheme". God has told us this and we have tried hard to follow His direction.

Our loving God has responded to our pleas and given us a gift so incredible! Garrett's biopsy results, the pathology report from the tissue samples, came back a ZERO! Zero is the perfect number! That means that the rejection from Garrett's body fighting his heart is gone, gone, gone! In June, Garrett's numbers were a high 3, out of 4 total.

I cannot explain the elation we feel tonight. The family is already sleeping peacefully for the first time in many, many nights. Everyone is wiped out. We could not have imagined that the report would be this good. Kathy and I were already trying to figure out if we should even tell Garrett if the report came back with high numbers again. He's been so very scared. Jessi, too, even stayed home sick from school today because she was so nervous. But God blessed us with an incredible gift.

The bible tells us that "He will not grow tired or weary, and His understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint" . We have renewed strength tonight, when we most need it.

I can tell you that tonight, we are soaring! We realize that this journey is not over. There are roads yet to travel and we still have to wait for the PRA (Panel Reactive Antibody) test to come back. Those are the little devils that mean the heart was also fighting the body and caused Garrett to have plasmapheresis and a number of chemo-type infusions. But with the heart function no worse and the initial biopsy report perfect, we're expecting really good news!

Our God is an Awesome God, even without the good news. But folks, tonight we are resting more peacefully than we have in months. It looks as though now we can just look forward to Garrett's heart just continuing to heal and get stronger.

I will post more when we get the PRA results, but wanted all to know that we received great news tonight. Everyone was in tears as we heard. As I held him in bed tonight, Garrett prayed and thanked Jesus for His love and healing. He prayed and said "daddy, every night I wonder if it's supposed to be my time". "Now I think I'm supposed to be here a while". Pretty fantastic words from a pretty fantastic boy.

To all of you who truly deserved a personal phone call tonight, I apologize. I was selfish and enjoyed my time with the family, soaking in the best news we've had in months.

God bless you all, and thank you for the prayers which He heard and answered.

Tonight, we continue to wrap ourselves in His armor. We're ready for battle. Here's to victory again tomorrow!

JD

"

Biopsy - Sept. 28, 2010

Garrett had is surgery this morning for the long anticipated biopsy. It’s not something we’ve wanted, but certainly something we need. We need answers. After months of complicated bumps along the way, he’s overall been feeling so much better so that’s good news.

The doctors just came out and told us that Garrett’s heart isn’t any worse, so we're claiming victory. We were so desperately hoping they’d tell us it was perfect, but the pressures are about the same as they were last time. We just have to wait for the pathology results which will come back tomorrow and hope they're better.

I can’t lie and say I’m not just a little disappointed, but have to remember that this is going to be a long haul. We had hoped and prayed that his heart would show significant improvement, but we have to count our blessings and just be glad that it doesn’t show it getting worse. Basically the pressures of the chambers are still high. The doc told us his heart is a little “stiff”, but as sick as he was this spring, it’ll just take time. Looks like it’ll take at least that year to get all better.

Garrett was pretty upset this morning, but his great buddy Gavin was there holding his hand and helping him stay strong. Gavin is such a blessing to Garrett. But he was very scared, as can be understood. He just wants the doctors to come back and tell us that he’s all well again. In a rare moment of feeling a little down, he cried quietly and asked me “daddy, why can’t I be normal”. Another one of those questions I don’t have answers for. All I could tell him is that our Lord needs him to carry this pain to be a light for others. I truly believe this. I carried Garrett onto the operating table for the 26th time in his beautiful life. I held him and loved him until he fell asleep, as he quietly called out to his cousin Levi and invoked the name of Jesus. Over and over he kept repeating "I love the Lord".

I will be praying so hard tonight, though, that the biopsy of the tissue will show the rejection cells gone. I don’t know what else to say. The journey will continue, so we’ll lean on Jesus and remember one of Garrett’s favorite passages: “I can do all things through Him who gives me strength."

More to follow tomorrow. Be in His peace until then and remember our little cowboy warrior in your prayers, please.

JD

September 15, 2010

Garrett’s Journey continues as the days tick by and we get closer to the biopsy surgery. The anxiety intensifies and questions still remain. He’s had an elevated heart rate lately and been complaining more and more of bad headaches and stomach discomfort. It’s hard to know if it’s related to just the stress or maybe something else, laying hidden and waiting to pounce. It's spooky!

I peaked at his homework the other night and he was working on a project where he had to write about his worst nightmare. He wrote (these are his words and spelling) “going to have a cath (biopsy) than everyone and everything goes rong.” It’s understandable why he’s scared, but I just want his fears to go away. Jessi and Kathy, too. They've carried a lot this year.

Kathy and I continue to try and keep their spirits up but we have our own moments, too. Kathy wants to go back to work to help our financial situation, but she can’t because of Garrett’s issues. We’ve had to bring him home from school too often and it’s hard to know when we’ll be “out of the woods”. She keeps her mind busy tending her flowers, making our house a home and working out when she can. The fear of the unknown her constant companion.

In order to maintain sufficient focus on the Journey and not deviate on too many side trips around “personal” experiences that really don’t have much to do with the presiding issues, I find myself with a conundrum of sorts. How do I use this forum to effectively transmit the story and yet formalize it to a personal level for each reader? It’s important, I believe, to strike a humble and delicate but practical balance between “reasonable and necessary” and “too much information” when relating some of the more sensitive matters without sounding like we’re feeling sorry for ourselves. So I like to fill in the gaps with some of the more pleasant and heartwarming anecdotes. Every day is shadowed by fear and apprehension, but overtaken frequently by the joys and gentleness that only God’s love can give.

Recently my kids have done a few things that pulled at my heart strings. Garrett was honored with the opportunity to throw out the first pitch, at the last game of the year for the sky sox. This was a big deal and not an occasion that lends itself to repetition. As is tradition, the catcher gave Garrett the ball as a memento. Knowing how crazy this boy is about his baseball, I knew this would be a souvenir he would relish for years to come. Yet Garrett had other plans. As he left the ball field to join us in the stands, he gave the ball to his baby sister! I have never been more proud of him for his display of love and unselfish actions. Then last weekend he was the guest of honor for a Cadet for a Day weekend at the Air Force Academy. He received a set of jump wings to pin on his custom flight suit and was told that it is tradition to wear them for a full 24 hours straight. At the end of the 24 hours, you hand them off to someone you love and want to be kept safe from harm. When the 24 hour period was up, Garrett gave his wings, again, to his baby sister.

As parents we always try to teach our children to respect and emulate examples set by many of our fine law enforcement officers, fire fighters, emergency care workers, soldiers, airmen and sailors, and to comprehend why it’s so important to live a life of service to others first. When I see them do things like this for each other, or someone else, it gives me so much satisfaction to know that somehow, they’re getting the message. So much has been done for Garrett, and all of us, that it wouldn’t surprise some to see him act “spoiled”. With God’s grace, he hasn’t. And Jessi.....it's all for someone else. Always.

So since this was originally intended to be a diary of sorts to capture moments before they drift from my thoughts, I’ll continue to jot some notes about daily life as we know it, because it’s all about the “Journey”, which includes the precious times that reveal how truly blessed we are.

With His strength and trying to truly live the words "Thy will be done",

JD

September 8, 2010

Howdy everyone. I've been on a sort of sabbatical from writing for a while. Partially from laziness and partially from selfishness. I've been trying to soak in everything that has happened over the whirlwind year we've had. So many folks have blessed us with their kindness and graciousness that we'll be all winter just trying to catch up on thank you cards. That's a good problem to have, though.

Garrett has had a very busy and fun last month or so, with much more excitement to come. On August 24th, he was the guest of honor at a Rockies game and was able to spend some time on the field with the players during batting practice. He was given a bat and it was signed by 9 players while he visited with them. Jessi, too, got a cap and a ball from Jeff Francis. Very cool day! He also got to go to a Bronco's game with his "Auntie Barb", which was a thrill for him. Then on Monday, Garrett received the honor of throwing out the first pitch at the last game of the year for the Sky Sox.

A big event coming up will be a trip to Orlando, FL to Disney World. It will happen after his biopsy surgery, so will be a very welcomed and exciting time to be sure. The kids are beside themselves with anticipation. The trip is compliments of the Make A Wish foundation. We will be able to stay at a site specifically for families of kids with terminal or life-threatening illnesses. I still can't believe it's going to happen. We've always dreamed of taking the kids there, but knew that financially we could not come close if we had to do it on our own.

As this adventure of ours has found legs of its own and traveled around, we've had tremendous opportunities to share Garrett's Journey with some very inspirational folks. Most recently, we've been contacted to share Garrett's story in writing and pictures for an event later this year at the Air Force Academy. The event is planned to share stories of folks who have dealt with challenges and kept on fighting. Then most recently, Kathy and I were guests at a special invite-only event to kick off the AFA football season. The room was filled with war heroes, athletes, business champions and boosters. The list of names would blow you away! We were asked to share our story that evening and were honored to do so. Any opportunity to share the many blessings we've received is truly appreciated.

We've stayed busy, trying not to think about the upcoming biopsy surgery, but it's now just around the corner and we can't help but wonder. Garrett has especially been anxious and has shown the out-of-character lows so rarely seen in him. He's been having some severe nightmares and is really scared that the biopsy will not come back favorable. My heart breaks for he and Jessi, as they carry fears that little kids shouldn't have to carry. We try to console and inspire them to think positive. Garrett's been feeling pretty good overall, but we did have to take him back to the hospital the other day because he thought his heart was failing. It wasn't, but he doesn't know when he feels a pinch or pain in his chest if it's a bad thing. With the mercy of God, the biopsy will prove that we've not just knocked this demon down, but we've knocked it down and out!

I did talk to the doctors, who admit that they truly don't know until the results come back. They're "cautiously optimistic", but can only say that they know for sure that Garrett has improved a lot. He's still not back to where we need him to be, but he's doing better since he got sick in August. But we really don't know if the bad cells are still lingering and going to re-appear. If that happens, it's back to the hospital for a few months to start over with a "more aggressive" approach. I can only liken it to pouring weed killer on crabgrass. The weed on the surface dies, and the grass gets greener. But unless you kill the root, it will eventually come back stronger and kill the grass. If that happens, you have to either find a stronger weed killer that also might harm the grass, or you have to transplant the grass.

So for now, again, we pray for continued resilience and determination. With the loss of Garrett's cousin, his other cousin in stage IV cancer, our cowboy gets a little down sometimes. Jessi, too, cried to me the other day, out of the blue. She said "daddy, I don't want God to let us lose Garrett or Levi, too". I just have to remind them that our God is so loving, so wise and so perfect, we just have to trust in His plan, not ours. Whatever happens, we will win because Jesus already fought the toughest battle for us. Just today we watched the news of so many folks who've lost their homes in the fires up north. We're blessed!

This weekend, Garrett gets to be a "Cadet for a Weekend" at the Air Force Academy. He gets to hang out with the team and see all kinds of very cool things. These tremendous events do so much to help the kids think of the fun things and not focus on what comes ahead. I'm so grateful for folks willing to help them like this.

As a daddy and a husband, I tend to doubt my abilities to protect my family. I'll keep working hard every day to do what I believe is right in God's eyes and do my best to give the rest to Him. We'll never live in a vacuum or stick our lower lip out for long. Life is too precious and everyone has challenges.

I hope this note finds all of our cherished friends safe and happy. You all bless us every day with your thoughts and prayers.

Be blessed, always.

JD

August 29, 2010

Howdy folks! Garrett continues to feel better after a two week bout with a bug from school. His system just isn't real strong yet, but we're excited that he is beating it. He's been starting to get nervous about his biopsy next month, so we keep busy doing fun things. A highlight recently was a special trip to a Rockies' ball game, courtesy of Make A Wish. Garrett was given a bat and got to spend time on the field during batting practice. He met several of the players, who signed his bat. Todd Helton even gave Garrett the batting gloves he'd just worn. To cap off the day, he got to visit with Jason Giambi, who Dinger really likes. It's a toss up between Helton, Tulo and Giambi for his favorite player. All three were gentlemen and kind to our little cowboy.

The nightmares are coming back again, but I'm sure it's because of the surgery next month. I had to wake him last night a couple of times because he was literally fighting so hard he was going to fall of the edge of the bed. We handled it like we always have, staying up together and watching baseball and rodeo. He's tired today, but in good spirits. We went to church this morning and he was so excited to be there. He truly understands the need to have Christ in our lives every day, to serve rather than be served, and to give back to God on Sunday for that special hour or so where we are in His house and worshiping the most loving of fathers.

Later today he gets a really big surprise. His "auntie" Barb is going to take him to the Bronco/Steeler game. Garrett doesn't know. He thinks he's just getting a ride to Denver to meet with his mom for the Rx apt. in the morning.

Garrett's blood pressure and heart rate continue to stay consistent, which is good. At least it's not getting worse. The biopsy will tell the story and let us know if we've beaten this illness once and for all, or if it's just knocked down and will eventually re-attack. Of course, that's always a possibility, but we hope and pray that for a while at least, the bad lymphocytes, T and B cells, are destroyed and his immune system is re-building as a more gracious host.

We didn't do too well with our hunt for a new horse yet. We've had a few nice offers, but are holding out until we find just the right one for him. After missing so much the past few years, he really needs a stick that will let him build his confidence back up.

Please keep Garrett's cousin Levi in your prayers when you remember the little cowboy. Levi and Garrett are so close, and Levi's brother Noah was taken Home a few months ago very suddenly. It's been pretty tough on the family this year and Levi is in stage IV cancer. We keep praying that both boys will beat their illnesses and let us go into the holidays as complete a family was possible.

I hope this update finds you all blessed and enjoying the last days of summer as God starts to change the colors and prepare us for Christmas. They will be more to follow, but I wanted to let everyone know that it's "business as usual". We're not out of the woods, but we can see timberline.

God bless and remember to smile. Your prayers have helped us stay strong and we continue to fight.

JD

August 18, 2010

It seems like a lifetime ago when Garrett was having chest pains early this year, and it was only in February. February of this year he was having chest and arm pains. They conducted a number of tests including a stress test and could not determine anything. Since then, as we all know, Garrett got very, very sick and we almost lost him in April. Since then, barring a few set backs, he's come back strong. We're still running the race and praying daily for the energy and steadfast commitment to stay the course and not deviate. Admittedly it gets a little tiring sometimes, just keeping the pace, but we're so blessed to be back home again.

Garrett's check ups keep showing positive signs that his heart function is very good, considering. He was able to try school but we found his immune system is just not that strong, yet. He got sick the first week and now is home fighting a full-blown sinus infection. His white cell count is up and his vital signs have changed just enough to show that he is fighting some stuff. He'll be home this week with another check up tomorrow. Hopefully he'll be able to knock this out quickly. Sinus issues can cause problems in the heart for these kids.

Having to stay home had its up side, too, though. His cousin Levi, who is in stage IV cancer, got to come out and spend the day with him. Those two boys love each other so much and it was a neat opportunity for them to just take it easy and hang out together.

Overall, we're optimistic that he'll keep getting stronger over time and by the end of September, his biopsy will show a clean slate. That's the goal, the wish and our prayerful hope.

Each day brings more promise, more sunshine and more proof that God is all merciful and true.

JD