Garrett's Journey

Merry Christmas 2011

2011-12-24T12:27:00.002-07:00

As we prepare our hearts and our homes to welcome the Christ child, we think of you all and the blessings your friendships and prayers bring to us.

God bless you and Merry Christmas!

Been A While - November 15, 2011

2011-11-15T13:53:00.002-07:00

Wow! It's been a while since I've written anything and I have no excuses, other than selfishness. By writing on this blog, I'm forced to deal with some memories that aren't all that fun. However, too many folks wonder how our little Warrior is doing and use this site as a reference. So, here we go!

Garrett has had a really good summer. He got to play baseball for the first time in the last three seasons, without having to quit early. The full season was really good for him and he excelled better than I expected. "Dinger" started every game and even made it to the All Stars, where he had one of the best tournaments of any kid on the team. You sure couldn't tell this boy ever had an issue.

As the summer wound down, Garrett got really excited for "middle school". I've never seen him that happy to go to school, but he really felt a sense of pride that he was getting through elementary and on to the big leagues! It really bothered him that he had to stay back a year because of his illness the past few years.

His excitement has dwindled some since then, because he's found out it's really just school again, but also because his immune system has been so compromised that he's catching every bug that comes down the pipe. He's missed a lot of school already this year and that bothers all of us. I just do not want him to have to be held back again. It would hurt too much. Fortunately, he has some really caring teachers and they are willing to work with us to help him catch up. Add to that the fact that a recent graduate of the Air Force Academy, a 2nd Lt., is willing to tutor Garrett for free! I just found out today. We are charging toward victory here, as well!

Since Garrett turned 12 this summer, he is old enough to hunt big game with daddy now. Through a friend-of-a-friend, Garrett was invited on an antelope hunt in Wyoming, on a ranch where only kids who've endured serious illnesses and wounded veterans can hunt. When we went in September, Garrett had the place to himself that day and harvested the buck of a lifetime! It was a very, very special day for us. The meat has been great and the trophy on his wall will bring back memories for many years to come. Just look at the smile in the picture. It says it all.

As we head into winter now, our sights are getting set on next spring when Garrett will have to endure yet another biopsy surgery. It will be the "big one" again, but we really need to know how his heart is doing. His general health has been all over the map this fall and it's been pretty frustrating. On the bright side, his nightmares have diminished considerably. It's heart breaking when that little guy is afraid to go to sleep. For now, though, we're going to set our feet for the long haul and prepare to sing "happy birthday" to our Lord next month. If Garrett can bring up his grades, 'Santa' has a nice little surprise coming.

I hope all of you remain as blessed as we are, and thank you for all the prayers. We don't know what tomorrow brings, we can't do anything about yesterday, so we'll prepare the best we can and make each new day the victory that it is.

God bless you,

JD

Happy Easter!

2011-04-24T12:42:00.003-07:00

I could not think of a better time for another update than on Easter. Exactly 11 years ago tomorrow, we came home after Garrett’s first transplant. Diagnosed in utero with Hypoplastic Left Heart Syndrome, we waited 9 months for a heart….7 of those months after he was born. He lasted, at the time, longer than any child on record. He refused to quit then, and he refuses to quit today.

Since my last update in February, we attended the American Heart Association Heart Ball in Colorado Springs. It was the second year in a row that they’ve used Garrett’s story to help raise awareness and money for research. In 2011, they raised $25,000 more than the year before, in an economy worse than a year ago. The blessings continue to reign as we continue to hope that Garrett’s story will help other children and families.

Garrett was given a gift of a turkey hunt in Kansas by some really cool men who own a local company. The trip was incredible. It was shared with Warren and Hal, the brother and daddy of Darren, the boy who gave Garrett his heart in 2008. Watching these two boys grow in their relationship and enjoy the brother they both need, makes a lot of the tears, fears and heartache seem worthwhile. Garrett didn’t get his turkey, but he’s hoping for retribution next month as he repeats his last year’s hunt with our friend, Marv.

It was during the hunt last year that Garrett became sick and was almost taken from us within a week. A biopsy scheduled in May will hopefully tell us that he’s completely clear of any issues and we can relax a little more. Incredibly, just a few days before the Kansas trip last weekend, Garrett began complaining of chest and left arm pain. We took him in to the local hospital and within an hour they had him hooked up to an IV and put Flight for Life on standby. They were very concerned and thought Garrett was having little heart attacks again. Understandably, we were scared out of our wits. Garrett was petrified and at one point started pulling the monitor wires from his chest and crying that he was “out of here”. He said “daddy, I don’t want to die. I don’t want to go through this again!” I hurt for him and his momma and sister, and I’ve got to admit that some of the memories keep me looking over my shoulder, too. Sometimes it’s difficult to focus on anything, and becomes an unpleasant distraction. His anxiety is still fairly high at times and the nightmares come and go, but I know that good news on May 3rd will help all of us a ton. It will be a pretty big day as they plan to biopsy the heart and enter both sides of the heart and coronary arteries. A long and trying ordeal to be sure, but necessary.

In the mean time, Garrett’s playing baseball again. He started out pretty scared, because two out of the last three years he’s gotten sick during baseball season. It has nothing to do with baseball, but it’s hard not to think about the connection. But he finally moved past that fear and is having a great year. He went 3 for 3 at the plate the other night and 4 for 4 in the field. He’s back!

11 years ago tomorrow, the day after we celebrate the reason for our faith, God let us come home. In the time since, we’ve traveled many roads, shared a cacophony of emotions and seemingly crawled the journey through some of the bumpy times. But Christ’s promises keep us grounded and give us strength to carry the fight another day.

Life is good, so greet each day with a smile.

God bless you,

JD

Feb. 4, 2011

2011-02-04T16:02:00.002-07:00

It's hard to believe that we’re approaching 3 years since Garrett's last transplant and have witnessed the many changes and challenges for our little warrior. If I spend too much time thinking back on them, it’s bring tears of joy along with memories of terror.

Flashback: In February of 2008, Garrett began complaining of chest and arm pains. So his doctor in Colorado Springs decided to run an enzyme blood test and determined that he was having little heart attacks. At the Children’s Hospital in Denver they performed an emergency catheter procedure that scared Garrett to a near panic. I remember him telling me “daddy, I don’t want to die”. I will never, ever forget that day, and I never want to experience it again. A doctor who had known Garrett since he was born told us that Garrett had advanced coronary artery disease, and was dying.

We all know what happened next. Garrett was blessed within a couple of days with a beautiful, healthy heart from a beautiful, healthy boy who left us much too soon. Darren’s family has become our own, and they were by our side throughout Garrett's severe rejection episode last year, and Darren’s momma was with Kathy when Garrett was close to going home. These two ladies share a kindred relationship that most mothers will never know. She and her husband will join us in a few days for a very special event.

This year the American Heart Association will celebrate an annual event known as the Heart Ball. The purpose for this charitable event is to promote funding research, education programs and policies designed to help our Nation’s children live longer, stronger, healthier lives. Each year about 36,000 babies are born with some type of heart defect.

In Colorado Springs the Heart Ball will be held at the Broadmoor Hotel. For the second consecutive year, the AMA has asked that we share Garrett's journey in an effort to raise awareness. They will play Garrett's video that they made in late 2009 (http://www.youtube.com/watch?v=cV4GZCuE0TQ ), which evidently helped the Denver event’s success 2010. We have agreed to their request, honored that our story of continued victory may help another child or family somewhere. We really hope that doctors in Colorado will be able to use the money and eventually find a cure for this terrible disease.

During the years of fighting this battle, I have to admit that there have been times when I became very nostalgic and was missing the innocence of my own childhood. I recall being not much younger than Garrett or Jessi and feigning sleep so my dad would carry me to bed. I felt so comforted, so protected in his arms. His thick, calloused hands and his soft kiss on my forehead after he put me in bed. Now it's my turn to do this for my own children and do what I can to keep my own family from harm.

There are so many bad things that daddies can't prevent. But we sure can vote with our actions and by sharing this incredible journey, I hope to capture these moments for future generations and maybe spark the one thought or dollar that eventually helps stop children's hearts from getting sick.

God bless you all.

JD

Jan. 6, 2011 - Goodbye Levi. We Love You.

2011-01-06T21:59:00.004-07:00

It’s been quite a while now since we’ve made an update to Garrett’s Journey, but it sure hasn’t been because there’s no news. We just wanted to wait until we had good news to share. Although clouded some by heartache, we grateful for our blessings.

Since the last update, we were able to all gather as a family and celebrate the birth of our Lord. Levi, although very sick, shared in this blessed event. Garrett and Jessi were so happy to be able to be with him. Garrett and Levi have fought together for so long and their bond is unbreakable. They’ve continued to fight with and for each other, praying daily for each others’ healing.

On Monday this week, Garrett underwent several blood tests to see if the PRA rejection numbers have come down at all. We were to hear something late today. As a quick flashback, in June shortly after his first rounds of chemo and plasmapheresis, the PRA numbers were around 90. We need to see them around 20. By September, although the cellular mediated rejection was perfect, the PRA remained at 89. This disturbed and confused us, but we’ve tried to stay positive and full of hope. With more hospitalizations looming after the New Year, we prayed for healing; for Garrett and Levi.

We were with Levi this morning as he was getting weaker. I brought him a kiss from Garrett, and a message; “tell Levi I love him, and ‘Cowboy Up’”. At mid day, God called Levi Home. He was in the arms of those who love him when he smiled and went away. An hour later, earlier than expected, we received a call from the hospital. Garrett’s PRA numbers are down 25 points to 64! We are finally seeing the positive movement we’ve been hoping to see. I’ll let you decide if Levi had something to do with that. I just know there is no such thing as coincidence. In the previous six months, they’d moved only 2 points.

While our hearts are broken to lose Levi from this world, we’re so grateful to have shared in his tremendous journey and being able to love him. We're better because of him. Now, he no longer has to fight and hurt in this world. He is in Paradise and in the arms of our Lord Jesus and Noah, who left us last June. I won’t presume to know God’s design, but must believe in His will and perfect plan. We don't know why we had to lose Levi and Noah in just 6 months. More questions than answers.

But today God called one home and gave another more strength to continue His mission. As we prayed tonight, missing our Levi, we thanked God for the beautiful day, for giving Levi peace and much needed rest and asked Him to help us honor Levi’s warrior spirit by putting on His armor every day.

Incredibly, in the midst of their own heartache and grief, Levi’s parents rejoiced with us and praised God for Garrett’s marked improvement. They are two remarkable, loving and humble servants.

The message I hear today was loud and clear. "Where, O death, is your victory? Where, O death, is your sting?" As death tried to take the moment, we were given reason to praise our Lord for Garrett's sake. Levi is no longer in pain, and Garrett is clearly getting better.

May His peace find you all. May His love comfort those who morn. And may Hope always overcome.

God bless,

JD

November 21, 2010

2010-11-21T00:42:00.003-07:00

Up kinda late tonight because Garrett woke up crying a while ago after a bad nightmare. So since I was up, it seemed lik a good time to drop a quick note about his progress lately. He’s having pretty severe nightmares again and gets pretty scared about his heart. We’re trying different things to help ease his concerns, but it’ll take a little time.

The really good news though, is that Garrett doesn’t have to go back for any treatments until after the holidays. The doctors feel confident that the PRA situation will not get significantly worse in that time frame and because he’s had such a tough year on a number of fronts, they’re giving him a little more time. I’m truly grateful for their decision, albeit a little nervous to wait longer. I really didn’t want him to have to spend Christmas in the hospital.

We’ve let him go back to school, which has been truly good for his mental health, but he’s pretty susceptible to every little cold that comes around. He’s already fought several this season and is in the middle of a cold as I write this. That part scares the heck out of us. He needs to stay healthy. The school folks have been really good about letting us know when other kids are sick, and we just keep him home and “home school” him for a few days. But you can’t see all of ‘em coming.

Having the holidays coming up will be good for all of us. Garrett’s cousin is really, really sick with his cancer fight and after losing Noah this summer, we all need to be here and together during this Christmas season.

We’re continually blessed and thankful that God has kept Garrett from getting sick like he had been. The fight is still on, but we’re still winning. We absolutely will just keep putting on the Armor of God every day and placing the right priorities where they belong; every day is a victory and each sunrise brings opportunities for happiness and the glorification of God’s great mercy.

Hope your Thanksgiving is a wonderful one. Each day is really Thanksgiving, but we can only eat that much once or twice a year. Otherwise we’d all swell up like blowfish!

Walk with Him. If you get too tired, He’ll carry you the rest of the way.

JD

October 26, 2010 - The Battle Continues, But the Armor is Strong

2010-10-26T09:23:00.003-07:00

Garrett continues to do as well as can be expected right now, and we are extremely grateful for that blessing. His checkup yesterday showed a little hickup in one of the anti-rejection medication levels, but not enough for concern at this time. We still have not recieved a read on the echo, but initial thought was that it looked "normal" (for him that is).

He's going to be an Air Force Cadet for Halloween this year, carrying his head high and pridefully wearing the uniform and wings he recieved from them. He still does not know that he will probably have to go in for more treatments in December and that's helping to keep his spirits high right now.

We appreciate all the continued prayers and support. We're going to WIN this fight!

"For we are not contending against flesh and blood, but against the principalities, against the powers, against the world rulers of this present darkness, against the spiritual hosts of wickedness in the heavenly places. Therefore take on the whole armor of God, that you may be able to withstand in the evil day, and having done all, to stand." Ephesians 6:12-13

Keep the faith!

JD

A Week of Happiness, Animals and Magic!

2010-10-10T21:02:00.005-07:00

This past week has been magical for our little warrior and his family. Through the kindness of the Make A Wish foundation, Garrett took us to Disney World in Orlando, Florida last week. It was truly a magical experience, creating memories for a lifetime.

The week started only two days after Garrett’s biopsy. We were guests on an American Airlines “Wish Flight”, where dream land characters met us at the Denver airport, showered the kids with gifts and sparkly confetti. A special cart took us to the plane staging area where the kids had a special baseball themed cake for breakfast. There were probably a couple dozen folks there, all dressed up in different themes. There were balloons and gifts; the area was decorated and a big sign over the gate told the world that Garrett Ross was the honored dignitary.

From there we flew to Miami. The plane was named for Garrett (stenciled on the outside of the 737) and the kids had their own special seats in the craft, again, all decorated up. They were given candy and cake and pop and all the “bad” fun stuff. The watched movies on the flight and were catered to all the way. In Miami, we were met by many more Make A Wish folks, who picked us up in a friendly-dragon themed cart that took us to the connecting gate. There, we were astounded by a huge castle themed set up. More cake, angels, fairies and Disney characters were there. More balloons and gifts and we met several other Make A Wish families from across the country. A face painter was there and a balloon animal creator, kept the kids busy playing games and having fun until the plane took off for Orlando.

At Orlando, we were met by Disney Characters, whisked away to the Avis rental car place, where the kids received more gifts. Even mommy and daddy received a gift basket of nice adult beverages for the vacation. We drove from there to “Give Kids The World” village in Kissimmee, Florida. That place is amazing! A small, security protected village, the GKTW city is completely magical. Themed for candy land with a water park, train, fish pond, three eateries, playgrounds, carosels, talking trees and dinosaurs. Mayor Clayton, the giant friendly rabbit, had parties for the kids every night. They could have ice cream for breakfast if they wanted and pizza 24 hours a day! Only 20 minutes from several major theme parks, the GKTW village is a remarkable venue. Garrett, who is normally a little apprehensive about taking his shirt off in public because people stare at his scars, was completely at ease playing in the water with lots of other Make A Wish kids who all had scars of some kind. It was remarkable to watch.

We met a family there who have a beautiful 3 year old boy who had a liver transplant. I actually had to pray for forgiveness because of the envy I felt when I learned this incredible father was able to save his sons life by giving him part of his own liver. How I wish I could do that for Garrett. I'd give him my own heart if I could. This family blessed us so very much and we hope to stay in contact with them for many years.

The Disney Parks were everything we’d hoped for, and more. We spent 5 full days meeting so many Disney characters, getting autographs, collecting pins, seeing animals of every kind, petting dolphins, watching killer whales, taking a dozen rides on roller coasters and water rides, getting soaked and laughing non-stop. We even got picked to be in a Disney parade at Animal Kingdom, complete with costumes and a float trip!

In the evenings, we’d settle in to our very own villa where we enjoyed real modern plumbing, meaning we could take more than one shower at a time and not run out of hot water! Truly a boon for the Ross Tribe! Each day the kids would received a gift from Mayor Clayton’s helpers and (within reason) eat whatever they wanted.

There were no down sides to the trip, with the slight exception that athough Garrett and Jessi do not know about his poor PRA blood work, Kathy did and it hit her pretty hard down there one night. I comforted her the best I could and prayed with here for the fear to go away. We tried to put the unknown aside and just enjoy the week.

Now back home, we had more interaction with animals, but not quite as fun. Our first night back, Garrett’s little terrier Stella found the working end of a skunk and then ran into the house. Guess who got to deal with that ? Welcome home…ha!

Reality strikes again tomorrow as we head back to Denver for a check up and meeting with the transplant team to see what steps we now need to take. Garrett has been on such a high lately, I’m really praying that his morale will not take a big hit.
When we know more, I’ll be sure to write.

We continue to be blessed beyond belief and the kids especially received a very needed reprieve from the pain and fear, on a trip that only before we could only dream about. See, dreams to come true!

God bless and keep you all,

JD

September 30, 2010

2010-09-30T20:36:00.003-07:00

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

2010-09-29T20:55:00.003-07:00

"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

2010-09-28T11:25:00.003-07:00

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

2010-09-15T21:51:00.003-07:00

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

2010-09-08T20:59:00.004-07:00

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

2010-08-29T10:22:00.002-07:00

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

2010-08-18T08:36:00.003-07:00

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

August 13, 2010

2010-08-12T22:52:00.003-07:00

Garrett's had a pretty good couple of weeks. He's back in school and we're a little nervous, but he's so happy to be with his friends. At the same time, he's scared he might get sick again. It's a heck of a thing for a 5th grader to have to worry about. He did give us a scare the other day but it turned out to be a false alarm. He became ill at school and was symptomatic of the same type he displayed when he became real sick early this year. We think it was just a little bug.

It's about midnight and Garrett finally fell back asleep. His nightmares are coming back and tonight's were doozies! He keeps dreaming of being in the hospital. It could be because he had a check up today. His heart function looked good and he's definitely better. We keep praying that we've really whipped it down this time. The biopsy will tell the story. But to look at him, he's nearly back to how he looked before he got sick last spring.

Tonight brings back so many memories. It's been a tradition, of sorts. Ever since Garrett was a little diaper filler, he and I have shared the tough nights by watching old NFR tapes when he can't sleep. I hate that he has these nights, so many of them over the years, but I feel so blessed to have the chance to share these moments with him.

Today the transplant team looked at some skin changes in Garrett's hands and wonder if it's late reaction to the last chemo. It seems long out from the infusion, but it's possible. We'll just have to watch it close.

As the summer starts to wind down we've glanced back at the past several months. My, how far we've come. I wish I could say we don't have any more trails to take this year, but with God's unending grace, they will be short.

More to follow.............

God bless,

JD

July 28, 2010

2010-07-28T15:41:00.005-07:00

Well it's been a week or so since I added an update, so I figured I should drop a note and let everyone know how things are going. Each day continues to be a blessing and we're one day closer to complete recovery.

Garrett's infusion went really well last Friday. His anxiety was high going in because of too many past problems. He cried a little and said he wished he didn't have to get sick again to get better, but he "Cowboy'd Up" like he always does. We only hoped he wouldn't have any bad reactions to the infusion this time. It gets ugly.

We decided to try something new this time in an effort to make it easier to find a large vein for the infusion IV. The problems in the past have been outlined several times. They include blocked/scarred vein sites and veins too small for the medicine/chemo, resulting in severe burning. Garrett and I started doing push ups a few weeks in advance to try to force blood into his arms and swell those veins up in the lower part of his arm just below his elbow. This is an area where they've had trouble finding veins in the past, but we know good ones are there. The trick worked like a charm! They stayed away from his wrist and inside elbow area and found a good, big vein right there in his forearm. They hit it on the first try and he never felt the chemo! The rest of the day went well and although he got sick that night and wasn't feeling well then next day, by Sunday he was back to his ol' ornery self and driving momma up a wall.

We had some friends come in to town Sunday afternoon from the High School Rodeo Finals and Garrett got to play with one of his "heroes", Brody, who is a stud bull rider. I got some great shots of Brody helping Garrett on the bucking barrel. Momma wasn't too high on that, but he's earned the right to be a boy and play hard. :-) I won't let him over do it. Just look at the picture...he's having a blast. A few short months ago we couldn't have dreamed he'd be doing this now. We don't know what tomorrow brings, so he gets to have fun while he feels like he can. I just don't have the heart to stop him from doing some things that bring him joy.

Garrett still has a long way to go before we're out of the woods, but just having few comfort issues is huge right now. The doctors said they now feel confident that Garrett is winning the battle and this last round of infusion should put us into that area we're hoping for, but won't know for sure until the biopsy in September. We feel like his increased activity level is not just because the bad stuff is knocked down for now, but down and out. Until the biopsy and tests, it's just stay a little more secluded because his immune system is compromised again, head up to Denver for check ups twice a week and try to stay healthy. Just heal up at home and enjoy every day to the fullest.

We did discuss the possibilities of another "bad" biopsy report in September and the options then are not fun. So we're not going to focus on the "what ifs", but instead greet every day with a positive "Cowboy Up" victorious attitude and hope for the best outcome. Wringing our hands and worrying is not what God wants. That's the enemy trying to beat us. All God expects is for us to to fight against those things that keep us from His glory. That is our goal.

For now, we're very encouraged. Garrett has been sleeping better with few bad nightmares, and with the exception of some discomfort in his legs and arms from the results of the chemo once in a while, he's relatively pain free most of the time. He really wants to go to school this fall, but probably won't be able to start on time with the other kids. Not until we're very confident he can handle being around all the germs.

I want to send out another very special "thank you" to so many who continue to read, pray and support this battle. You know who you are, but probably will never truly understand how deeply humbled and appreciative we are for all you do.

God bless.........

July 19, 2010

2010-07-19T12:30:00.008-07:00

Well it's a new week with new information to share.

Kathy got home from her trip and I'm not sure who was more excited to see her; me or the kids. After a week of playing "Mr. Mom", I'm sure glad to have the foreman back in town. The kids, too, are really glad that she came home and took my big stick away from me.

Actually, we had a great time together. Warren and Garrett spent nearly every minute doing something together and the messes they made were worth the joy I saw. Warren went to the hospital with us and stayed by Garrett's side through all the check up routines. Garrett truly looks up to his “big brother” and Warren’s patience impressed me. Both boys treated Jessi fine although she spent much of her week playing with her little friend Lexi, from out of town. The girls have known each other since birth as they were born in the same room, both premature, less than 24 hours apart. They became room mates in the neonatal intensive care unit for the next month or so. It’s pretty keen to see them together.

Our highlights for the week included a private tour of the Pro Rodeo Hall of Fame and box seats for the rodeo, all courtesy of Brenda and our friends at the PRCA. Then on Saturday Marc and Christina Smith, members of the Hoyt and Peterson’s Bow hunting Archery Pro Staff and many others whipped the mules to pull off a benefit archery shoot at the Air Force Academy range. Their kindness is second-to-none. We were able to stop by for a few hours and had a blast. All the kids got to shoot and Garrett even beat me on a “closest to target” shot at a quarter sized dot. There truly is nothing like sharing God’s outdoors with a child.

The unfortunate lowlights of the weekend were Garrett's cousin Levi having to undergo emergency surgery to relieve fluid in his lungs. That fighter is doing better, too. Later we finally told Garrett his beloved ol’ mare died. There never seems to be a good time for bad news. His little heart was shattered and he sobbed for her. But I promised him a replacement and will make that happen soon. We tried yesterday but it wasn’t a good fit.

Today, and only home a couple days somewhat refreshed, Kathy got back in the saddle and took Garrett to the hospital for another check up. But we received information about his antibody levels and they’re still too high. Sometimes all of this information gives a distorted panoramic perspective of where we've been and where we need to go and it can be hard to comprehend the magnitude of the situation. I've always said that you can only eat an elephant one bite at a time; it just seems that every time we take a bite, like a lizard tail, a daggone piece grows back.

As good as Garrett has been feeling compared to where we were a few months ago, he's still got quite a journey ahead of him. He is apparently not producing the antibodies from the donor heart rejection, which is good, but the PRA (Panel Reactive Antibody) level is still too high. So unfortunately we have to go back in this week for another round of infusion. The PRA level is driving the infusion treatment regimen right now and it appears to be working. We’re just not there yet. Treatments to reduce his PRA include the Rituximab (a B-cell specific antibody), IVIg, protein A immunoabsorption and plasmapheresis. These are all the ones their doing/have done on Garrett so far. The PRA is a blood test routinely performed on patients waiting for kidney and heart transplants and it measures anti-human antibodies in the blood. Patients showing high PRA’s are often referred to as ‘sensitized’. Patients with high PRAs are less likely to receive transplants if they need them, as the risk for immediate antibody-mediated rejection is significantly increased. That means it’s a bad thing.

When I had the chance to look at my sleeping family all together at home again on Saturday night, I wished I could snap my fingers and let them all dream the perfect dreams and wake up to a perfect world with no fear or pain. But as a friend once told me, that's Somebody else's job. The only perfect place is where we will all be together in paradise. So my job now is just to give them all completely to Him, follow His will and stay the heck out of His way. He works better when I’m not trying to fix things.

JD

P.S.: By the way....Garrett does NOT need a new heart. We hope he won't. Help me stop the rumor.

July 11. 2010

2010-07-10T23:13:00.001-07:00

It has been a short while since I've updated this site and quite frankly, was waiting for something happy to write about. Well, we have it! In the midst of the recent bumps in the trail we've been teetering a little and started having doubts. Not doubts about God's great will, but doubts about our own ability to handle yet another blow with the type of disposition and an upbeat spirit we expect of ourselves.

I’m proud to announce that we’ve pulled through and still see a shining light ahead of us. Just as any loving father does, our Father in heaven picked us up off the ground when we fell and dusted off our britches, set us back on the pony and said “ride”. We have, and it's a good journey.

Garrett’s check up on Friday was a blessing! His heart rate was 107, but has been as low as 92 recently. The real excitement came with the reading of the echo. The physicians told us that Garrett’s heart has “definitely improved” and looks “as normal for him as it can be at this time”. We’re super happy about this news. Garrett looks better, feels better and is healing better now. Garrett told me “daddy, my heart feels better when I’m out of this * place.” There’s something to be said about the healing power of home. We lost Noah, but Noah was the reason I brought Garrett home.

We still have a journey ahead because on top of the general healing still to come, Garrett has right ventricular hypertrophy. In layman’s terms, it means he has thickening of the heart wall in the right ventricle. Extreme cases of this are deadly. If his got worse, it would mean another heart transplant would be needed. For now, the doctors are not disturbed because they say Garrett’s had it for a while. But they’ll be watching it closely and we’ll be praying that it does not worsen.

The other great news we have to share is our house guest this week. We have a rare loving relationship with Garrett’s donor family since God saw to it that we all met when Garrett got his new heart. In the two years since, we have become extremely close. Garrett and Warren (Darren’s younger brother) share an incredible relationship and Warren has come to stay with us for a week. Just being with Warren brings Garrett great joy, and Warren is a tremendous role model for Garrett. He is a great young man for Garrett to emulate. As I write this, the two boys are asleep in the bed next to me. We're in a hotel in Denver because Garrett has a check up in the morning.

Meanwhile, Kathy and Warren’s momma are sticking their toes in the sand on a beach and getting some much needed relaxation. They’ve both been through so much and the kindred friendship they have helps them both heal. I pray with all my heart that Kathy's tender heart begins to heal with this trip.

We know we're not out of the woods. Even as I'm laying here writing, Garrett just woke a few minutes ago with a terrible nightmare. They are terrifying to watch and must be more so to endure. Thankfully, he does not remember them usually. This one was pretty nasty and for a minute I thought he couldn't breath.

But when I look overall at all we’ve been through, I can’t help but see the blessings each bump has produced. So we’re going to stay strong and try to give better than we get. Jesus taught us that for he who has been given much, much will be required. Well, I’ve sure been given a truck load of blessings so we’re going to stay on our toes and remember to give all the glory to Him. We just have to keep getting up and putting on our armor of God every day and stay prepared for battle.

Life has many challenges, but it is pretty dang good.

JD

July 1, 2010

2010-07-01T22:18:00.005-07:00

It’s been quite a week. Quite a week. It really has been a journey within a journey for our little cowboy. On top of the uncertainties of his own health, he’s been trying to grasp and understand why his cousin, Noah, is gone. Jessi, too, has cried every night at bedtime. They want their “Noahee” back. But God has called him home, and our Lord has the final word. Once again, the kids are hurting and daddy can't make the pain go away.

Kathy and Garrett burned up the road between Denver and here to take care of the hospital necessities and to be with the family as much as possible. With everything going on, I made the decision to bring them home. The time has come. The Ross Tribe has been through enough bumps, dips, arroyos and hills and we need to be together, in our own home. We'll continue to fight this battle, but want to do it on familiar ground. I called the folks at the hospital and explained my plans. I didn’t ask for permission. I just told them that this latest blow is too painful for Kathy and Garrett to take long distance. After some discussion, the doctors agreed. Garrett has completed what we hope will be his last chemo-infusion last week and now it’s just hurry up and wait until the next biopsy. They feel, too, that with the dry roads of summer we should have no problem getting Garrett up to Denver for his check ups a few times a week. If we're still in this fight come winter, we can always go back. We just need to be home for a while. We need to decompress. I told them that I believe to let Garrett sleep in his own bed, be with his complete family every day and play in his own yard will do more to help his heart heal than our other options right now. He and Levi (Noah’s brother with stage IV cancer) also need to be with each other. They feed off of each others’ highs and lows, and share that common bond that those of us not fighting every day for life just can’t comprehend. It's kind of like men who have gone through war together. Only they truly can understand that bond. I can tell you it's a wonderful thing to witness. Kathy and Bonnie, too, (Noah and Levi's momma) need each other close.

Today we were split again as Kathy and Garrett had to head to Denver for his appointment at the hospital. I stayed behind to see Noah one last time in this life, and to kiss him goodbye for all of us. It still feels like a bad dream. Later today and without much fanfare, Garrett came home. Tonight, we said our prayers together, in our own home as a family, knowing that tomorrow we don’t have to be apart. Not anymore. At least not for a while. We know that we have to go back periodically, and will have to stay up there for a short stint during the biopsy surgery, but for now we’re ok. For now, we’re home.

As for Garrett’s checkup today, not much change but he feels good. He’s ecstatic to be home and we really have to watch him because he won’t stop playing until he gets sick. The heat is especially tough on him. But having this boy playing this hard is a good problem to have right now. His face and eyes are still puffy and his pulse rate isn’t where we want it, but we’ll get there. We will get there.

Saturday we will send Noah on his way. Sunday, Noah’s ashes will be scattered across his favorite mountain range. Meanwhile, I still seek the words to help Garrett and Jessi deal with more unexplainable pain.

In one week’s time, two members of this family have come home. One here, and one there. Both are in a place where they will find joy and heal among those who love them. We’re so thankful that God blessed us with the time we had with Noah. He loved Garrett and Jessi so much and never, ever failed to let them know. They adored him in return. They will carry that love until they see him again, when there'll be no more tears. The real tragedies are found with those who leave this earth never having felt this kind of love.

Continually blessed, constantly consecrated in His grace and Mercy.

In victory,

JD

June 28, 2010

2010-06-28T22:27:00.004-07:00

Garrett had a good Sunday and a good checkup on Monday. There's no significant changes either way with his heart function,but one valve seems to be working a little better today, which makes this post very difficult to write. I want to sound excited that the weekend didn't cause any lasting issues but Garrett, and the whole family, took another kick in the guts this morning. Garrett’s cousin Noah was found dead this morning by his father. Noah, in his mid 20’s, was like a big brother to Garrett and the brother of Levi, Garrett’s cousin who is in stage 4 cancer. We don’t know a lot right now, we’re just trying to wrap our arms around this latest fork in the trail. It's hard to comprehend. Kathy basically helped raise these boys and they are as close with us and any family we have. She is absolutely devastated.

As could be expected, the entire family is ripped to the core right now. Kathy and Garrett came down and we spent the day with the family trying to make sense out of a senseless loss. To lose Noah so suddenly for no apparent reason, in the midst of Levi and Garrett’s battles has truly rocked us back on our heels. Many are asking what more we have to endure. I’m seeking the words to try and explain to Garrett and Jessi. The words are hard to find. They love their Noah deeply. We all do.

Please keep Noah, his folks and his brothers in your prayers. We hold firmly to the belief that God’s plan is a perfect plan. There has to be a reason. I will wake tomorrow and ask my Lord how I can serve him this day. I will not secede from my mission, but I honestly have more questions than answers right now. We will do everything we can to completely give this to the Lord and pray for some sense of peace in this chapter of the journey. We can never forget Christ's words to us when he said to "deny yourself, pick up your cross and follow Me." By the Grace of God, we're trying. The void left by this loss will be palpable.

JD

June 26. 2010

2010-06-26T23:57:00.005-07:00

I promised an update to let everyone know how we finished the day yesterday. After a pretty bumpy start, we ended up in pretty good shape. Besides being tired and lightheaded, Garrett was dang happy to be breaking out. By the time we got back to the basement, he was worn pretty smooth. It took about two hours for the first adverse reactions from the infusions started to set in. When it did, it came in the form of deep bone pain in his legs and jaw. But God’s angels gathered around him and let him finally fall asleep. He had a restless night but overall slept pretty well.

When today rolled around, Garrett sprung up and was feeling surprisingly good. Against my better judgment, we took him to a PBR event. The Western Wishes Foundation had secured tickets for us, knowing how crazy Garrett is about rodeo and especially bull riding events. It didn't turn out to be one of the better decisions I've made.

We knew about the tickets well in advance of the event and had dangled that carrot in front of Garrett for a while. I didn’t have the heart to take that away from him after he’d fought so hard yesterday. The day was sunny and warm and the event was only 50 minutes away. The doctors gave us permission to go if he felt up to it. They’ve said to let Garrett’s body be his guide to how much he can handle. The problem is, I don’t think we can trust that anymore. I’m not sure he knows what it really feels like to “feel great”. His whole life has been full of pain and illness off and on.

While he had a great time and got to talk to some of the cowboys after the event, we just pushed it too hard. By the end of the three hour program Garrett wasn’t feeling too well, had a bad headache and before we got home I had to pull over so he could throw up. You can bet it spooked his momma and me. Jessi, too! She buried her head in her hands and prayed that he was ok. The bone pain came back, too and I had to carry him into the house when we got back. His legs and feet hurt too much to walk. Tonight it took pain killers a while to finally get him comfortable enough to fall asleep. Even as rough as he was feeling, he hugged me in bed as we said prayers and thanked me for taking him to the bull riding. He told me that he thinks these “fun times” help his heart heal faster. He says it feels so nice to “be out of the hospital”. He “feels free”. He said he’s just glad he didn’t get as sick as he did a time before from the infusions. Wow.

Daddys make mistakes. That’s one of those givens that comes with the job and I dang sure make my share of them. After all he’s been through I try to make sure he has plenty of fun experiences to break up the monotony. But I should have known better than to try and take him somewhere less than 24 hours after coming off the needle. But he wanted to go so badly I just couldn't take that away from him. How a little boy who is fighting like he does can find fun in a day where he got sick from the medicine in his body, is beyond me. His attitude truly inspires me.

Sunday is going to be a ‘day of rest’. I can promise you that much. I don’t think I could handle knowing I’d let him do something that put him back in the hospital because I didn’t have the sand in my craw to go with my gut and do what I should have done. But the good news is that he did have fun today and the joy he had being around the world he loves was more memorable to him than getting sick from doing too much, too soon. For me, though, I learned a lesson today I won’t soon forget.

One of the brightest spots of the day was getting to see Donnalyn Quintana, the incredible lady who founded Western Wishes. Garrett and all of us love her so much. This tremendous Christian lady has dedicated so much of herself to helping sick and injured cowboy kids forget about the pain, needles and sickness for a little while. Completely engulfed in the love of Jesus, Donnalyn “adopted” Garrett a few years ago and continues to reach out to him through her foundation to make sure the rodeo family never forgets the heart of a champion that beats in this little boy, and so many others like him. Among them are a little girl with stage 4 cancer, another little girl with stage 3 cancer and a 13 year old bullrider recovering from ruptured insides after a bull riding accident over a month ago. Please keep these kids and their families in your prayers.

May the blessings of the risen Lord guide you this week and shower you with many blessings, like He has for the Ross tribe.

JD

June 25, Tough Day

2010-06-25T13:33:00.005-07:00

It’s now shortly after noon on Friday, June 25, and Garrett is finally resting. It’s been a long morning for our cowboy. When I got to Denver last night, Garrett was already pretty anxious about today because his fears of having to get another IV were overtaken by the immense concern that the infusion might burn like it did last time. We tried to reassure him, but couldn’t lie and tell him it wouldn’t. We hoped, but just didn’t know. Unfortunately, his doubts were confirmed this morning.

The little bumps turned into bigger ski jumps. When we arrived at 7am, they weren’t ready for us. After 11 years of dealing with Garrett, they know that he has some PTSD symptoms from all the trauma he’s had to endure. In the past his transplant coordinator has done a good job of prepping the staff so Garrett sails through with few hickups. This usually includes having everything in place, making sure an anesthesiologist is available to conduct the IV and give him oral cocktails to help him relax. This process all stems from the hundreds of IV’s he’s had over the years that have damaged and scarred his little veins. They average 3 needle sticks for one IV, and then the chemo-type meds have a tendency to burn. Sometimes they make him very nauseous as well. Put that in to about 30 IV sticks since the first of April and you can understand why he’s a little upset that it might hurt.

Unfortunately, Garrett’s normal coordinator is gone on family bereavement leave and a proxy is filling in. In addition to not calling Kathy twice this week to update us on blood tests, as is the norm, this person apparently didn’t read the history and failed to have anything in place. This significantly increased the wait time and subsequently, the anxiety level. Fortunately, I had sort of a suspicion this might happen and had called ahead yesterday to ensure an anesthesiologist was ready. The initial needle stick went well, but without time to get pain and relaxation meds ordered by the forgetful proxy, the burn of the infusion meds was too much for him to take. He was in a lot of pain and then got nauseous. He threw up. They had to stop the infusion. Garrett begged for a pic-line. He said he didn’t care if he had to stay in the hospital another week, he wanted the pain to go away. Doctors told him that a pic-line was not an option this time, so the only option was another IV spot because the first one was in too small a vein. We needed to find another, bigger vein.

Through the first series of jabs, sticks and harpooning, I watched him grimace and squall as the chemical medications burned up his arm. Then Garrett started and kept up a breathing pace that impressed the nursing staff. How many 11 year olds know tactical breathing? It's a battlefield proven method to contradict some of the body's natural reaction by working to combat stress. He did a great job and took the last two pokes, including a blown vein, without a tear or sound. He said “daddy, I really tried to cowboy up and not cry but I just want it to go away”. I assured him that he owes nobody an apology. Even the toughest warriors in history have cried. They just came back fighting, exactly like he does.

It's hard to try and explain to him why he has to hurt and get sick in order to get better and go home when I don't understand it myself. I just know that God has a perfect plan and we need to trust in Him. But three more sticks and two blown veins later, we finally are in business. I know I’ve said this before, but there is not a dang thing fair about this process or anything this boy has had to go through. It hit pretty hard today for some reason and I was not too gentle with how I handled the absent minded nurse. I’m just a little tired of seeing him in pain and seeing his momma and sister crying because they’re tired of seeing him hurting. Kathy gets very scared when the nurses don’t call and are supposed to. History has shown us that it’s usually because they have found something wrong and are taking another look. Kathy has had to call the proxy to remind her to do her job. We can’t wait for our nurse to get back.

Even though we were here early we got started pretty late because of the administrative glitches, so it looks like we won’t be out of here until late tonight. He’s about four hours in to a 6 hour infusion round then has two shorter ones after that. If he’s still doing ok, we get to go home tonight. I’ll let you all know.

On a lighter note, I performed some minor oral surgery on Jessi today to help a loose tooth get ready for the Tooth Fairy. It was successful, even without a maxillofacial degree. We also gave one of Garrett’s “Cowboy Up” bracelets to a little boy who got hit by a car. Poor little guy was peeled by the asphalt and still manages to try and smile.

God bless and have a great weekend. We’ll update once we know how he’s handling the meds this time. The sun is up, the birds are singing and it’s a pretty day regardless of how tough it started.

JD
P.S. - Oh, that absentminded nurse? I spoke with a doctor and told them I fired her. I want one who’d be on the ball and will spend a little time finding out about her kids. Garrett and Kathy have earned that much.

Father's Day

2010-06-20T23:25:00.006-07:00

Happy Father’s Day to all the daddies out there! My Father’s Day weekend was very special and blessed because God gave me the chance to spend it with my two wonderful kids and their incredible mommy. For a few precious moments, we were reminded of who we are together. One more time the doctors let him come home to decompress before we enter the battleground again. Garrett heads back to the hospital this week as we start another round of infusion treatments. It’ll be a challenging week to be sure, but it’s just another step in the journey we have to take. He's starting to get scared about it and he knows the biopsy is just around the corner.

But for a day or two, we got to put it behind us and just be a family together again. These two days magnified the love I have for my family and my commitment to fight until my last breath to raise honest, ethical and self reliant kids who live every day for God. Being a daddy is a passionate vocation. In my line of work, I’ve seen too many kids who don’t have a daddy. Oh, they have someone who fathered them, but they don’t have a daddy to inspire and motivate them. God ordained daddies with a monumental task. We are to love our children enough to encourage them and give them courage, but also enough to discipline them and keep them focused on the right things. But we also have to balance it just right so as not to raise a spoiled, selfish egotist and not so hard that we break their spirit. With a prayerful iron fist in a velvet glove I try to give them what they need to survive. I just don’t know if I’m doing it right, but I’m giving it all I have. Fortunately, I have Kathy. Mommy's job is to make sure I'm on track. It is the most frequent prayer I offer to the most loving of Fathers. I don’t want to fail my children. I want to help them find their path to Heaven.

Before we turned in for the night I talked with the kids about the cleanliness of dirt. One of the best gifts I can give my kids is good dirt. The kind of dirt you’d find on a ball field, or a rodeo arena, or in a hunting camp helps inspire a clean life. I explained how healthy it is to get dirty cleaning pens or the dog kennel. It’s hard to express in words they can understand how calluses, splinters, blisters and dirt under the fingernails help them become better warriors. So many kind people got really dirty cleaning up our place a few weeks back, and they left that day absolutely sparkling clean.

Good dirt is one of the best ways there is to get clean. Few things clean the soul like good, clean dirt. Conversely, few things damage the mind and soul like evil dirt. The kind of grime you find on a computer screen or television produces filth unlike any other. Hollywood doesn’t give a pinch of owl poop about the souls of my children. The enemy exists in powerful brigades through the media outlets and in the name of “entertainment”. We hear it in the music and see it on the screen and in the magazines. Newer, faster technology and “feeling good” without responsibility is what they feed our children. I couldn’t care less about having a cell phone that downloads movies. The moral fiber of this country is damaged to the point where a true daddy has to put on his armor every day to bring the fight to those who wish our children harm. It scares the heck out of me. I don't worry when they're riding their bike with no hands, running around in the horse pens or trying to catch a wild barn cat. I worry when they're inside with few options but to watch TV.

The risks facing Garrett right now are not just limited to his heart. They talk about “at risk” kids. Let me tell you, every kid today is “at risk”. I’ve seen some of these so-called kids shows. Most of them are garbage! Without daddy around him every day right now and Garrett being physically removed from an environment specifically designed to help him grow and mature properly, he is constantly in the cross hairs of the evil one and the immorality the TV screen is trying to inject into his mind. It’s more dangerous than any physical disease. I’ve been trying to find the right words to teach him about humility. I want him to look at every gift, every toy, and every card he receives from so many folks, and to put a face to them. I want him to understand that each gift is connected to the blessing of a person somewhere who loves and prays for him. It’s not just a toy; it’s a link to someone who took time to care. I hope he gets the message, because the alternative is gloomy. He did something tonight that shows me he is, though. He gave his sister one of his birthday presents, just because. It warmed my own heart.

So for all the fathers out there, I wish you a blessed Father’s day. Give your children some good ol' dirt. It will help clean them up and help them stay morally sound. For my Father’s day gift, I want my family home so badly and for life to be “normal” again. I hate the separation. I want my kids to be outside and getting dirty again. There’s chores to do.

JD

June 16, 2010

2010-06-16T21:49:00.003-07:00

I’ve been remiss lately at updating Garrett’s Journey and have been reminded of it this week. Sorry folks. Guess I got caught up in the week's activities and just waiting for God to give me new words that will help everyone track our little warrior’s progress.

We had a great last weekend. Garrett and Kathy surprised Jessi and I by showing up at the house Friday night! The doctors decided to give Garrett a birthday present by letting him come home for a day. It was really a tremendous experience for all of us. They got home just before dark and Kathy stopped the car about a third of the way down our lane. She just sat there for the longest time and took in the whole picture, being her first time home in nearly 3 months! All of the flowers and paint and clean up done by our old and new friends who blessed us with their energy and effort to give her just what she deserved – a beautiful home to see when she finally did see it. She was blown away!

Garrett jumped out of the car and ran to me calling “daddy, daddy, daddy” all the way. He jumped up in my arms and hugged me so tight he squeezed some water right out of my eyes. What a moment! I turned around a moment later and he was gone. I figured he would have run to see the animals, but instead I found him lying on his bed just giddy with excitement. That little guy missed his own bed so much he couldn’t wait to find his comfort zone.

We spent the next 24 hours as a family in our own home and the feeling was just perfect. It wasn’t fireworks or tears. It was just a tremendous, calm comfort that is difficult to describe but I miss it already. Here's hoping that August will find us here again, for good.

I sometimes get weary because I want this trial to be over and for us to be together, here at home, where the kids can be in their own environment riding horses, chasing after dogs and being country kids again. I worry at times that too much separation will cause their young minds to forget life here. Jessi unknowingly put my mind at ease and reminded me of our most precious blessings. Sometimes I need to be reminded not to sweat the small stuff.

Recently I’ve learned of some other families who are going through some very difficult emotional times and I thank God every day that Kathy and I have remained as one, and that our family is still intact. Too often I’ve seen families pulled apart by tragedy, disappointment or trials that life throws at them. We’ve certainly had our challenges in that department, but we make a daily decision to love one another and never let any earthly challenge override what God has built. About a month ago, Jessi was playing on my computer and I found a little note she had written. It said ...“My family is the best family there is. First of all my mom is a great cook she cooks the best food ever. Second of all my dad well he takes knaps most of the time but also he gets me whatever I want and takes me riding. Third my brother well first of all right now he`s in the hospital it`s not surprising to me cause he`s always is in there but who cares were still together and that’s what madders. But soon he`ll be out of here ’hopefully’ and back to himself well his onry self. That is my loving family. THE END

How accurate and honest are her words?! Not the part about "daddy" napping (I only fake nap :), but the “who cares were all still together”. That IS what counts. We are still together. Our hearts are forever bonded through this challenge by the power of the Holy Spirit and God’s amazing love. I truly don’t know how anyone can start a day without Jesus as their guiding Light.

Garrett’s been feeling good comparatively, and his heart rate has been holding steady in the low 110’s. So very close to the target range of the low 90’s. It’s clear we’re gainin’. He goes back in to the Hospital next week for another round of infusions, and then it’s more waiting until the biopsy. Regardless of the outcome, we know we’ll be ok because we are together, even when we're apart, and we’re surrounded by God’s Amazing Grace.

Tonight we offer more prayers of thanks for what we have, for the challenges that bring us closer to Him and we ask for His mercy on those who need Him most. We also, as always, pray for His comforting and protective mantle to blanket all of you who have walked this journey with us.

JD

June 11, 2010

2010-06-11T09:05:00.003-07:00

Garrett's check up went well today. His heart rate is down to 111, which is the lowest yet! He's got another infusion scheduled for a couple of weeks down the road. Depending on how he responds they will determine when to conduct the next biopsy. They told us a few weeks ago that it may be the end of the year before he can come home. However, today they said that if the biopsy turns out good, we might be home by the end of July!!! Keep up the prayers, please.

Had some nice responses already to finding a horse for Garrett. Jessi and I will start checking them out next week. She and I discussed the possibilities when we went to her first barrel race of the summer last night. She did great and didn't knock down a thing. Ol' Pepper, a heading horse she stole from me, didn't bobble and he's fresh. Good horses are so fun to have.

We met another tough little cowboy last night. During the lead-line event for little kids, a 4 year old boy got bucked off of his momma's barrel horse. Little guy hit the ground like a lawn dart and stuck without a bounce. He didn't move. It scared us all pretty bad. I was the first one to him and was administering first aid triage. When I asked him if he hurt, he said it was his back. I asked him if it "felt like a punch or somebody poked you with a pencil". He looked up at me and said "it feels like I fell off a horse". We all cracked up. This is one tough little guy. Never even one tear. I gave him a "Cowboy Up" bracelet because he dang sure earned it. All he wanted to do was get back on. These little guys continue to teach us if we listen.

It was nice to have Jessi enjoying herself again last night. This whole situation has been pretty tough on her. She is bound and determined to find Garrett a good, solid and gentle horse. One that isn't crippled or will die in a year. She's wise beyond her years.

Garrett's attitude continues to shine. He's been feeling pretty good, with all things in perspective. He just wants to heal up and come home. He's not looking forward to more hospital time, but said "daddy, it's what we have to do". He's such a good boy, but I'm biased.

Appreciate all the kindness and prayers. God has blessed me and my family immensely, and we'll stay strong to finish this fight.

God bless you all and have a great weekend.

JD
"Dynamis Ex Cardias"

June 9, 2010 - New Day, New Chance To Learn

2010-06-09T21:52:00.006-07:00

Garrett’s 11th birthday was a blessed celebration! There was no doubt that we’d see this day, we just honestly didn’t know if it would be from a hospital bed. God gave to his momma and me the greater gift by allowing us to share this victorious day with a boy who was happy just to be at a ballpark. The game was great, the weather perfect and the moment now etched into our hearts forever. We arrived at the park in time for batting practice and stayed until the last pitch. There are more battles that lay ahead, but for now, life is good. And that’s good enough.

Today brought back a taste of reality. Being a cowboy kid, Garrett gets to learn about life differently than kids in town. Today was another example, as lost his ol' mare. He doesn’t know about it yet, and I’m going to wait to tell him. He doesn’t need another disappointment right now and this one will hurt. Only a few weeks back he’d cried missing home and whimpered about wanting to see his horse again. Unfortunately, we weren’t able to make that happen soon enough. She was a good ol’ mare and gave him lots of joy for the time God allowed us to have her. His momma and I will decide when to let him know. We just didn't see how knowing right now would help him heal. He's had enough kicks in the gut for a while.

Almost exactly two years ago, the mare developed a large tumor in her sinus. (See June 23, 2008) For reasons only known to our Creator, she sloughed the tumor and got better. A chance in a “billion” according to the vet. This time it wasn’t to be the same outcome. The tumor came back with a vengeance and she couldn’t breathe anymore. It came on fast and I’m grateful she didn’t have to suffer much. When Garrett comes home, he’ll find her buried next to the other kids’ horses in the pasture under the old cottonwood tree west of the house. Once again, good friends stepped up on a moment’s notice to help out. So many of you have been incredibly kind to us. Your compassion does not go unnoticed by us, and certainly not by God who said He “will render to every man according to his works.” Yours are great and deeply appreciated.

The situation gave the opportunity to discuss “Heaven” with Jessi as we try to understand it, and knowing that we cannot possibly know what God has in store for those folks who keep His word. Even the bible is very specific when it speaks of God’s private plans. “No eye has seen, nor ear heard, nor the heart of man conceived, what God has prepared for those who love him” [1 Cor. 2:9] In the face of a rough day I'm just awed by the timing of our Lord, allowing me to use this life lesson to teach and learn more about Him.

Jessi got to visit the grave tonight and say her goodbye. She took it hard because she loved the ol' girl, too, but also because she knows how hard it will be on Garrett. She placed some flowers on the mound, flowers that once again our wonderful neighbor picked up just for the occasion. It was sad, but being a cowkid herself and having been through this before, Jessi understands that we don’t own the animals in our world. They are made for us to care for, love and respect, and are just on loan from God for whatever time He determines. We knelt and said a prayer thanking God for the joy this old horse brought to our family and especially to Garrett. A smile came to Jessi’s face later when I explained that she will be a tremendous help to me because now I need to find Garrett another horse and I need her to try them all out until we find just the perfect one. (If anybody knows of a good solid, bomb-proof kids' horse, preferably one that's had a job and seen lots of cows and arenas, I've got a professionally trained heading horse I'm willing to trade straight across)

I wanted to share this story because I thought it really puts into perspective what is truly important in our lives. After an evening of complete fun and being able to forget (almost) what is going on inside Garrett’s body the loss of a beloved kid’s horse is sad, but every time we have to say goodbye to one, we are grateful for being blessed with many good horses over the years.

Although it was a tough start to the day, I can’t help but rejoice in the excitement we shared last night. It was a nice interruption to the daily battle. We keep working toward that day when Garrett will come home, and praying that God will allow that gift soon. Garrett has yet another in-house infusion in about a week or two, then more waiting and hoping the regimen will do its magic and make him well before the biopsy.

As I close tonight, I want to share another quick story I heard today that also really defines the “cowboy up” attitude. A 14 year nephew of a friend of mine had quite the wreck earlier this week and is gratful to be walking. He was riding a colt Monday afternoon when the horse flipped over on him, tearing his scrotum in half with the saddle horn. He suffered the traumatic removal of one testicle.

He was flight for life’d to Children's Hospital where he underwent emergency surgery. The doctors were able to re-attach the very important item and sewed him back together. After 24 hours he went back home, clearly upset when the doctors told him he couldn't rodeo for at least a month. "Cowboy Up" is just what it means. These tough cowkids don't have time to feel sorry for themselves. They just want back in the game.

Have a great week. You’re in our prayers.

JD

Birthday Boy

2010-06-07T22:39:00.011-07:00

Tomorrow morning at about 1000 am, our beautiful little warrior will celebrate 11 years of victory! Actually, a little more.

On March 31, 1999 Kathy and I learned that the baby she was carrying had a sick heart. For 4088 days we have fought and prayed and rejoiced in each day our Lord has let us share our time on His earth with this wonderful child warrior. The littlest cowboy is getting big.

I'm writing this now because I won't be writing tomorrow. The doctors told us today that although Garrett's heart is not showing any signs of improvement, it's not getting worse either. What we are excited about is that his immune system is showing signs of getting stronger, so we can take him to a Rockies' game for his birthday. So tomorrow night, we'll be eating dogs and cheering our favorite baseball team.

Tonight when I got home, I was overwhelmed at the look of the place. So many kind folks cleaned and painted and planted flowers over the weekend. I can't wait for Kathy to see it, hopefully soon! I looked around and could not believe that such a sinful man as I could receive such blessings I purely don't deserve. But I am so grateful! As I was looking through the house, I knocked a picture from the wall in the kids' room. When I picked it up, I found a note on the back of it that I'd written to Garrett just days before he got his first heart in 2000, and days after they'd opened him up to band his arteries to buy him more time. At the time I wrote it, Garrett was in intensive care at the Children's Hospital. I'd like to share it.

January 14, 2000
To My Son Garrett-
Your mommy & I are so very proud of you. Each day you fight to see tomorrow’s sunrise. Each day you smile and show your love for life. Each day you hurt as your little broken heart vigorously works to bring you what you need. Each day your eyes glisten with the words only you can show. Your fight began so long ago, yet each day you win another round. Each day we pray for Jesus to hold you closer. Each day brings hope of more dreams to come true. My life has more meaning now because each day I love you more.

“Do you know how much I love you?”
Always by your side. I will never leave you – I’ll be with you to greet each day.
Love, Daddy

I don’t remember when I bought this little picture, but I remember it struck me then, as it does now. It is a calligraphy of a small child in his jammies, on his knees, hands folded in prayer. Below the picture is the following caption “Let the little children come unto me, fore such is the kingdom of Heaven……….Matthew 19:4. I love this passage. Our Lord tells us many times how precious are the little children in His eyes. It is a passion of mine to seek and find the path that will lead me to Him, as a child.

Again, I don’t remember writing it, but I discovered it when the print fell from the wall of Garrett and Jessi’s bedroom wall. When I picked it up, I read what I had written some 11 years ago. It seems clear to me, looking back through my memories, that the man who wrote those words was one whose heart was breaking but refused to give up and expected only a positive outcome. I would not have written something to my son unless I expected that some day when he grew up, he would find and read those words. I can only assume now because of the job I do, that I wrote it so in the event I was ever killed in the line of duty, he would one day know how much I loved him then as I do today. And I still refuse to give up.

As we celebrate his 11th birthday tomorrow we'll think back to those early days when a hurting father was praying for his little warrior cowboy to get better. And he did get better. Time and again. And though he's still fighting today, my thoughts are still the same. I lift him up to the Greatest of physicians and ask for His healing touch. There are still more dreams to come true, and being able to hug him on his 11th birthday is but one of them.

Celebrate this great day with us by thanking God we're able to wish our Garrett a happy birthday. Thanks for being here with us.

By the way, please notice the change in the name of Garrett's blog. Dynamis Ex Cardias ....this is the motto of the U.S.S. Dewey. The most heavily armed battleship type in our Navy, and the work "office" of our incredible neighbor's daughter Casey. Her shipmates have adopted Garrett and amazingly, their motto fits Garrett's Journey to a "T". The Will To Fight From The Heart - Dynamis Ex Cardias. Please keep these incredible warriors and defenders of our freedoms in your prayers.

As always, standing tall with you before the Cross that heals all hurts. Dynamis Ex Cardias,

JD

June 6, 2010

2010-06-06T21:45:00.004-07:00

We had a really nice weekend overall. We celebrated Kathy’s birthday Friday night with family and she had her special day just about her. Garrett had really bad nightmares the past few nights, but short of having bad headaches and nausea on Saturday, has felt relatively good all weekend.

It’s very clear that the past few months away from home have impacted Garrett a lot. Because he’s limited on what he can do, he finds it naturally easier to sit around watching t.v. instead of running all over the place chasing dogs, hitting balls, riding his bike, climbing hay stacks, playing with kittens and generally having the summer fun of a country boy. Living downstairs in the “man cave” with his baseball cards, wrestling and bull rider toys is fine, but it’s not what summer is about. So I decided to build a toy for the kids so they can have a little of “home” with them while they’re stuck here. Some PVC & cement, some 45 and 90 deg. Connectors, a roping dummy head and some paint…….voila! A backyard roping toy. The kids cracked it out today and had a lot of fun. Of course it had to be painted the Rockies’ colors, so we named him “Rocky” the roping dummy. I posted a few pictures. They can drag it around and not hurt a thing. The perfect backyard cowboy kid toy!

I was telling a friend this weekend that it seems like this time in some ways is even tougher mentally than two years ago when he got his third heart. When he needed a heart transplant we were devastated, but hopeful. As soon as he got his heart we were able to set little goals to reach. Now we are living with this situation of more questions than answers. Everything is so uncertain. Hope still exists in its most precious form, but the wait is different. I guess that’s just the way it has to be, as Garrett would say.

I sprung a surprise on Kathy today. Some incredible folks from a local church, led by a very special couple, the Axtons, took on a huge project at our place while we’re gone. They cleaned, mowed, planted flowers and even got rid of my manure mountain that had been growing exponentially over the past year. With my weak glass-back, I’ve been putting it off until I could secure a skid steer. They approached me a little while back and teasingly told me we “didn’t have a choice” in the matter. They wanted to help. My only real request was that if they were going to do this, make it pretty for Kathy. When she comes home, I want her to see a beautiful home where she can sit in the mornings enjoying her coffee and let the troubles drain away. They didn’t disappoint.

They sent us a few photos and the place looks amazing! I can’t wait to see it. As embarrassed as I am to have someone else do my chores, we’re humbled and blessed beyond common words. I can tell you this, Kathy and I have already talked and we look forward to the day when we can pay this kindness forward for another family in need. When I showed Kathy the photos, she was excited but also quickly became very melancholy. She misses her home so much. Kathy hasn’t been there since this rodeo started over two months ago. Garrett, too, saw the photos and nearly started crying. I need to get my family home.

But as I lay here tonight thinking of this little bump in our trail I realize that life cannot be judged only by a single season. When we walk the halls of The Children’s Hospital, every season of life is there. We’ve been blessed to have experienced and/or seen all the seasons from the cold and grey to the warm and colorful. I tried to explain to Garrett tonight that our season of spring will come. We must get through the winter of this journey in order for God to present us with new life and the colors of our summer.

It will get better. As you can see from the photos, Garrett’s already feeling better. His heart rate is bouncing up again, but we have to remember it may take a year for his heart to heal completely. On nice days like this it’s hard not to let him run around a lot, but it was much too hot to let him play until it cooled down this evening. With time we pray his strength and endurance will only flourish and bring back the health he’d become so used to for a few years. Everything is in the hands of the One who brings us the spring and summer that we long for. He has the perfect plan and though it doesn’t make sense sometimes, I can’t help but think of the lyrics of one of my favorite songs from church; “Glory and Praise to our God, Who alone brings light to our days”.

May your days be well lit with the presence of our everlasting God. And please don't forget to keep praying for our troops. So many years ago today we lost many soldiers on the shores of France as they fought to preserve our freedom. I'm grateful for their sacrifice and to their families who shared them with us.

JD

June 3, 2010

2010-06-03T20:27:00.002-07:00

Jessi and I were laying in bed tonight reading scripture and I read the story in Matthew where Christ tells us how to pray. I’ve read that story many times before, but tonight it struck me and I hope God does not consider me a hypocrite by praying publicly in this forum. Please understand that I use this opportunity as a means to share Garrett’s story, but also to share my sincere love of Jesus Christ.

His checkup today went well. Kathy said the bloodwork is stabilizing with no changes, so we don’t have to add any more meds this week. We still don’t have any report on the echo because the doctor was busy and didn’t get a chance to see it today. Hopefully tomorrow. The nurses said that he looks good, though. Everything considered, he’s showing improvement. We’re blessed!

Today is Kathy’s birthday. Because of the crazy situation we find ourselves in, I couldn’t be with her on her big day. Still have bills to pay so I found myself at work. After all she's been through, she deserved to have a special day, just for her. I’ll make it up to her. Take care of those who take care of you. When the chips are down, you need someone to hold your hand and pray with you.

I’m reminded tonight of the centurion who only asked that Jesus say the word and his servant would be healed. I am a modern day centurion who wears the uniform of authority and has soldiers (police officers) under my command. I, too, do not deserve to have Jesus in my life. But I know with every ounce of faith within me that should Jesus but say the word and Garrett will be healed.

Have a tremendous weekend and enjoy all the wonders our Creator has made.

June 2, 2010

2010-06-02T21:41:00.004-07:00

B-cells, T-cells, auto-antibody rejection, acute rejection, chronic rejection, acute vascular or humoral rejection, OKT-3, IVIG, CD4-T cells, CD3, lymphocites, fibrosis, mycophenolate, myocardial movement, imuran, immunosuppression, chemotherapy, plasmapheresis......................the list goes on and on.

These are but a few of the words and terms we've learned and heard about in the past few months. None of them make a whole lot of sense on their own. They are medicines, cells, diseases and treatments. The discussions that have developed because of Garrett's issues have included some or all of these at one point or another, but all we really know is that it's not "take two aspirin and call me in the morning." I wish it were that easy. We just want our healthy, happy boy back home again and playing in his yard.

The fact remains that his heart is sick and it needs to get better. We've learned that he has three different rejections going on. A battle on three fronts. He's fighting T-cell rejection from his body attacking his heart, and he's fighting B-cell auto-antibody rejection from his current heart and traces from his last heart that were never discovered.

We also know that Garrett was feeling better today and that is a blessing to us all. That's why I often say that every day is a victory. When we pray at night before we try to sleep, we ask God to hear us clearly. To see us holding Garrett up to Jesus in prayer and beseeching Him to grant our request. Nothing is impossible with God. Nothing.

I believe there are blessings of grace when we accept the pain and offer it for lost souls. Our fight is difficult, but it has a glorious gift at the end......Paradise. I cannot imagine going into a fight with only the earthly gratifications as our only reward. For 11 years now we have fought on this battleground. Somehow in His infinite love, God picks us up just when we can't take another step. He manages to give a sick little boy the ability to smile and play when he wakes up just a little better than he was the day before.

There are brighter days ahead, but darker ones may also linger in the shadows. Garrett wants to live. He wants to run and play and forget about the pain, needles, hospital beds and nightmares. I want that for him. But if I want for too much, too soon, impatience can cause more disappointment. So we will continue to wake each day and call it a victory, rejoice in the little achievements and pray that as time goes by, this pony's steps will become lighter and the grass will get a little greener.

We may have three fights going on at one time, but we also have a Trinity of power who have already won this biggest battle of all. So this battle is nothing. I'm just thankful for the little victories right now. Every day that Garrett wakes up and feels better, it's as if he forgot any pain from yesterday. This enthusiasm strengthens us, and it gives him more strength to fight the beast another day, hopefully knocking it out of the park this time.

Be blessed,

JD

June 1, 2010

2010-06-01T22:32:00.003-07:00

Garrett's check up today showed that his anti-rejection blood levels are a little off, so they re-adjusted his meds again. More of that ol' balancing act. We learned that they didn't see any changes in his heart echo, which was a little disappointing but we're grateful it at least didn't go backward again. The past few had shown definate improvement in his heart function and the doctors told us that they need to see continued improvement. Obviously we wanted improvement, but it could just take a while.

On the brighter side, Garrett's little rash has subsided and his other issues were better tonight. He told me on the phone that he didn't feel "great" but he felt "good enough". I'll go with that. We can't be too selfish and have to remember that patience truly is a virtue.

I want to share part of a note that my sweet niece gave to me today when I got home. She is such a special lady and has a great walk with Christ. In her note, she wrote to me the following - "Never forget that you are enclosed in the most Sacred Heart of Jesus and it is there that He will protect you and reward you."

Here's hoping that the Sacred Heart of Jesus envelopes you all for a wonderfully blessed week.

In Him,

JD

May 31, 2010

2010-05-31T21:58:00.004-07:00

We’ve had a super weekend, setting aside, if not momentarily forgetting the fear and it is now coming to a close. Garrett is starting to hurt again, probably as a reaction to the infusions from Friday and we’re praying he doesn’t get full-blown serum sickness again. Just the thought of it is disturbing and scares him a lot. He just got done asking me to take his vital signs again. I’m up with him tonight because the discomfort is making it hard for him to sleep. We’ve been trying to change the subject by discussing how much fun we had this weekend.

Yesterday we had a visit from great friends and today we got permission to take Garrett to a roping event for Western Wishes for a few hours. It was a tremendous experience and the winners of the mixed team roping, Jay and Tammy Ellerman gave their winning buckles to Jessi and Garrett and donated their winning money back to the event. That’s the second buckle Garrett got this weekend. Western Wishes also made a special presentation to him of a “Western Wishes Champion” buckle. The loving kindness of these and so many folks continues to amaze and humble me. Kathy even made a new friend at the roping whose son had open heart surgery several years ago. The two women found a lot in common, and through tears of remembrance and happiness, shared a unique bond that only mothers of sick children can know.

Garrett did really well today as the buckle presenter with Jessi as his assistant. They also gave each winner a “Cowboy Up” bracelet. The roping event today concluded a three-day event to raise money to help start a Colorado chapter of Western Wishes. As many of you know, Garrett has been a recipient of Western Wishes dreams in the past and we are so honored to use our story to help the program reach out to other kids. The cowboy family is very special. They often pull together to help each other as they did 100 years ago. I recently asked Garrett which charity he would choose to help support if we were ever able to be in a position to do so. Without a second thought, he said “Western Wishes”. He said there’s a few others like Transplant International and the American Heart Association, but the Western Wishes organization is set up to help sick and injured cowboy kids to just be kids again for a little while at a special cowboy events. In our lives, the blessings of Western Wishes have brought smiles to Garrett and Jessi time and again, and we will always be grateful for them and what they do. They work for God. www.westernwishes.org

Tomorrow brings us back to the hospital and with good news from that, sends me back to work. I hate leaving Kathy and the kids and can already feel myself tightening up. With this new leg of the journey upon us, it sure looks as though we’ll be doing this all summer. I know they’re in good hands up here, but in these uncertain times it makes it so very tough to drive away from them.

We keep trying to stay positive and thanking God every day for our blessings. Sometimes overwhelming thoughts of “why” and “what next” crop up and they make it hard to sleep, but that’s just the enemy trying to take control. We know that it may take many months for Garrett to heal completely and could even require another tour in the hospital if this round didn’t whip all the bad guys. We hope not, but that’s the reality. Garrett has accepted the fact that he will spend his birthday away from home. With this last fight the past few weeks our waiting time starts all over again. I’d like to say that as a family we’re always patient with each other but that would be a lie. But overall, I’m proud of how everyone is handling the ambiguity that is life right now. Occasional weekends like this one go a long way to suppressing the anxiety and unanswered questions.

With guardian angels working overtime I’m hoping Garrett will be blessed with fitless rest tonight. We’ll wake tomorrow having again made the decision to accept the situation, wrap ourselves in the Lord’s mighty armor and take the fight to the enemy. As our little warrior cowboy’d up again today, demonstrating that he truly is a cowboy gentleman, we’ll cowboy up along side of him.

JD

May 30, 2010

2010-05-31T00:39:00.004-07:00

Let me first apologize for not updating this in the past few days. In my selfishness, I failed to let everyone know that we are OUT of the hospital again! After so many days of hospital living, we're all kind of worn out and being selfish with our time together.

After Friday’s infusions of more anti-rejection chemos and IV steroid, we were given the weekend off. Garrett was allowed to stay at the motel with us and we just hunkered down to soak up the sunshine that had just been injected into our lives. In addition to the IV immune globulin treatment to help develop antibodies to protect against infections, they infused a substance called Rituximab. It’s frequently used in chemotherapy treatment for types of non-Hodgkins lymphomas as a T-cell attack. So far, Garrett has not had any significant reaction to this medicine like he did with the anti-thymocite globulin used last time, but we won’t be clear of that possibility for about a week.

The past few days have been wonderful. Garrett and Jessi have been laughing and playing like they haven’t done for two months. We’re keeping a close eye on his activities so he won’t over do it, but at the same time we don’t want to make him live in a bubble and are letting him be a little boy for a few days. On Tuesday, we’ll be back to the hospital for a checkup and if the echo shows improvement, we have even more reason to be hopeful. If so, he gets to stay out of the hospital and move back to his aunt’s house. If not, he may end up back in-patient for more infusions. Either way, we’re back to step-one of the waiting game. Another biopsy is planned in about 6 weeks.

We ran into another family the other day, who like us, have a very sick child. We hurt for them because they don’t seem to have the spiritual healing and faith to help them fight their predicament. One of the father’s comments was “we’re just getting by one day at a time and it just sucks the wind out of you”. “The whole thing sucks. Financially, our backs are against the wall and we just wake every day to see if (their child) is worse, or just crappy”. I’ve said it before, but I really don’t know how anyone can go through this type of emotional trauma without God to help the heartbreak. We’re praying for them and would appreciate it if you would, too.

Don’t get me wrong, we’re not running around singing and dancing every day, but if we wake up tomorrow, we know we have the chance to keep fighting and praise God for that opportunity. We’ve sure felt like dancing the past few days, though. With his little body starting to replace the good things removed during the plasmapheresis, Garrett is feeling so much better. It really is a joy to see the transformation. His color is back and there’s a twinkle in his eyes. Let’s just keep praying that the future reveals that the rejection is now stopped and only healing remains. His heart rate continues to bounce around, but I’m hoping it’s only because like any wounded muscle, it needs time to get back into shape.

For now, we’re having fun with our new found freedom and may even go watch a roping on Memorial Day. His immune system is drained again so extra-special precautions are in order, but he’s happy and right now, that’s good enough. We're not out of the woods, but I think I might see timberline up ahead. We know that we’re ok. One way or the other, God promised over and over again. We have to believe in that fact. While the fear still resides, we won't let it win because we keep reminding ourselves of our Lord's promises.

Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need. (Hebrews 4:16)

Hard to argue with that, huh?

God bless,

JD

May 27, 2010

2010-05-27T22:10:00.003-07:00

A DAY TO REMEMBER!

We woke this morning to quite a surprise, and it was just what the doctor ordered. Literally. We almost had to pinch ourselves to see if it were really true! Garrett's cardio team decided that he needed a break. They informed him that he would have to go through another round of plasmapheresis plus another one-hour infusion, then if he were feeling ok, they'd let him go to the ball game! Unbelievable!!

Blood tests this morning showed that his electrolyte levels were still a little off, but much better than yesterday. Garrett was feeling better this morning and he was motivated now to stay feeling better for the day. The doctors told us that they conferred and felt that Garrett's morale had taken too many hits lately. In their combined opinion, the benefits of waiting another day for more infusions and having a day away outweighed the risks. It was a beautiful day and if we handled it properly, a trip to Coors Field would be not much different than taking him outside on the hospital lawn for some fresh air.

By 2pm Garrett was done with all his work for the day and they removed the neck line. They put a pressure bandage on the wound, wrapped up the IV in his arm (because we’ll need it again tomorrow) and after another dose of electrolytes gave us an R&R pass for the day. They gave us a "to do" list to ensure a safe day, made sure we had all the emergency phone numbers we needed, and sent us on our way. We put him in a wheelchair, mask and his Rockies jersey and headed for the park. We didn’t get there until the bottom of the 6th inning, but as it turns out that was about perfect. He looked pretty rough, but you couldn't knock the smile off of his face with a sledge hammer.

The ushers hid the wheelchair and I helped him down the stairs to our magical location. After sterilizing the seats, he got to see the 7th and 8th from behind home plate, but by then the sun had taken his steam. We moved into the shade for the top of the 9th and the game was over. It was a short game for us but it did more for his self-esteem than anything has lately. Having this come one day after his buddy, former Major League great Tom Urbani came to visit him and he’s been in hog heaven today.

Here comes the icing on the cake. They let Garrett stay with us at the motel tonight! We’re close to the hospital so they’re ok with it. This is the first time all of us have been in the same place, all by ourselves, since this leg of the journey began at the first of April. Happiness abounds tonight.

Tell me God doesn’t answer the prayers of wounded warriors! Just yesterday we were praying for a little tranquility in Garrett’s life and were amazed by this tremendous gift the doctors let us have today. Tomorrow brings another day of work at the hospital, but we’ll all be a little more rested and rejuvenated. We don’t have to be there until 9am, but Garrett will have to undergo about 8 hours of infusions with a new med. It’ll be a tough day, but we’re more ready for it now.

I’m closing tonight with a scripture passage put on Garrett’s hospital wall by one of his nurses. Today, it read so true, to so many.

“Let your light so shine before men, that they may see your good works and glorify your Father in Heaven. “ Matt 5:16

We will continue to try our best to do just that.

God bless,

JD

May 26, 2010

2010-05-26T22:48:00.006-07:00

Well, I guess I’m just not sure what to write lately. It seems that every time I jot a note about Garrett feeling better, within hours he feels worse. When I write that he’s feeling tough, he then proves me wrong by finding a burst of energy. Today was no different. Garrett had little energy today and was pretty melancholy and discouraged most of the day. One of his IVs was plugging up, so they had to have two more finger pokes just to draw blood for testing. We’re praying they won’t have to start another IV.

Garrett had a pretty tough night last night and woke this morning feeling very tough. His face is puffy from the disease and the treatments and his whole body aches. The little cowboy tries really hard to stay positive and feel good, but the apprehension he’s feeling about his immediate and distant future is pretty consuming. It would be hard enough for him under normal circumstances, but when he is tired and sick it gets magnified. He’s been having irregular heartbeats the past 24 hours that are different than what he’s felt before and they scare him. At one point he told me “daddy, I’m sorry I’m sad today. I’m trying to stay happy because I know what happens has to happen”. Y’know what? He’s earned the right to feel that way for a while. He asked his mommy to pray with him several times this evening, asking Jesus to make him better. When I talked to her at bedtime, she tearfully told me that it’s hard for her to understand right now…”he just doesn’t deserve any of this.” She’s right, but we will continue to trust in God’s perfect plan. We try to keep an honest perspective because while we're fighting a tough fight, in this hospital it is common to find folks who don't have near the blessings that we've been given.

Blood tests today show that his electrolytes are out of whack so they gave him a couple doses through the evening to help. These electrolyte disturbances primarily involve abnormalities in the levels of sodium, potassium, and calcium. While potentially serious if gone un-corrected, it is not surprising because of the oil changes he’s undergoing. Pulling the old plasma out of his system not only gets rid of the bad things, it also removes good stuff, too.

We did get a nice interruption part way through the day when some folks from out of town dropped in to bring us gifts and just pray with us a while. A very close friend of ours from Oklahoma also came all the way up here, too, just to offer support and be here today. These visits were timed perfectly and Garrett definitely cheered up and felt better for a while.

Tomorrow is a pretty large day for our warrior. Garrett has a 2 ½ hour plasmapheresis procedure starting at 7am, followed by 6 + more hours of anti-rejection infusions. But it’s supposed to be a beautiful day outside and we have lots of new movies to watch, so that will help take away some of the blues.

I can’t write much more tonight because I’m tired and need to re-charge the system. Kathy’s taking the night shift and I’m at the hotel with Jessi. We decided to get a room about 10 minutes away because true rest is rare at the hospital. We’re taking shifts so we can keep up our strength for him and for God. I’ve included a couple of photos, not to shock, but just to show you how sick our little guy is right now and how glorifying it will be to see a happy, healthy little boy again.

We deeply appreciate the prayers, intentions and love sent to Garrett. I’m asking that you continue to hold him up to our Lord in prayer and ask for a little tranquility in his mind and heart. His journey has many more miles to go.

JD

May 25, 2010

2010-05-26T01:35:00.005-07:00

Today, we got more of them than they got of us. Garrett had a really rough night of last, but mercifully today was better. He underwent another round of plasmapheresis and another dose of anti-rejection infusion without any problems. Although extremely tired and still very uncomfortable, he stayed in good spirits. He wore a Nike arm band today that Chris Thomas, his Air Force buddy, gave him after the Armed Forces Bowl. He said it helps him be tough like Chris.

This afternoon after the oil change, he asked to go for a walk. Said his rear end was getting sore. Geez, I don’t know how he lays in that prison of a bed as long as he does without complaining. We got permission to mask him up and go on a little expedition on the floor, but he didn’t have much strength. We ended up getting a wheel chair after about 100 yards and Jessi pushed him around a while.

We came up with an ingenious solution to the 4-6 inches of lumen connections sticking out of his neck. They tend to bend over and hang out, catching on anything, and this obviously causes him concern and discomfort. So before we took our trip around the floor, I took some coban, which is like elastic vet-wrap tape. I made a sort of Rambo-like head band. It holds the lumen ports against his head so they don’t bounce around. After putting the mask on, he looked like a diminutive bandit heading out to rob a 7-11.

We’re hoping that tomorrow or Thursday we can make a conference call of sorts to his classmates. It’s their last week of school and we initially had planned to surprise him with a day trip home to see his friends, from a distance of course. Following that, we had tickets to the Rockies game for this Thursday’s matinee. They were a gift and were right behind home plate. Well it’s pretty certain we’re not going to make either of those, so at least we want him to be able to say “hi” to the kids at school one last time before summer. Hopefully he’ll get the chance to see his buddies before too long and just be a little boy again.

He’s been resting well tonight so far, but gave me a bit of a shock when his alarms went off about midnight. His pulse rate went way down into the high 70’s and his respirations were down to 4-5 per minute! Then he got a little fussy and was obviously having a nightmare again. His vitals suddenly shot up to over 120 bpm with 19 respirations. After a little while he settled, but for a few minutes my own heart got to beating pretty fast. Those bad dreams must really be something!

I had another friend ask how we try to keep a positive attitude during the tough times. It isn't always easy, nor are we always smiling. But it's the big picture that counts. During my “down time” I’ve been reading “Lone Survivor” by Marcus Luttrell, a retired Navy S.E.A.L. who recounts his harrowing battle in Afghanistan in 2005. It is the worst loss of life for the S.E.A.L.s ever, and yet describes a personal triumph of monumental proportions. It is a must read for anyone who wants to know what really happens over there and what men are capable of enduring when they refuse to quit. The “never-say-die” mind-set of these heroes is awesome. I find myself reading all kinds of books throughout the year, but tend predominantly toward true stories of valor and achievement. They inspire and help me to keep my focus and remind me that battles are won or lost based on faith and attitude.

We try to surround Garrett with positive thoughts and examples. We encourage him to seek role-models who display behavior that demonstrates their faith in God, willingness to first learn to serve others and who drive-on through pain and sometimes seemingly insurmountable odds, to honorable victory. We can provide the information but that decisive, stubborn and competitive fortitude has to come from within. I think we’d all agree that this boy has it.

Have a blessed day and don’t forget to fight the good fight!

JD

May 24, 2010

2010-05-24T23:02:00.004-07:00

Today was a tough one. After a relatively uneventful night, Garrett woke up to doctors in the room preparing us for the day’s events. Unfortunately, talk is cheap and it’s hard to sugar coat the angst, pain, excitement, fear and gremlins that lay ahead.

I don’t know if it will help, but I’ll try to explain the procedure and what it is intended to do. A two-hour surgical procedure was conducted to place a main-line jugular vein double-lumen central venous catheter in Garrett’s neck, just below his ear. They sew it in place to keep it from being compromised and cover the incision with a large gauze pad and a thin, clear tape-like protective guard. Two big ports are available outside of the skin and these are used for the plasmapheresis. For the 25th time, I held his hand, took his first tear and kissed his forehead until he fell asleep.

Sometime this afternoon, the oil change crew came in with three large carts. One held a computer terminal, another was a crash-cart and the third was the machine itself. It kind of looks like a dialysis machine on steroids. The plasmapheresis machine reminded me of something out of “Young Doctor Frankenstein”. It’s used to separate the blood platelets from the plasma. When a person has autoantibody rejection, the bad stuff attaches to the plasma. By removing the bad plasma and replacing it with good plasma substitute, the hope is that if done enough times we can remove the anti-bodies that are hurting Garrett’s heart. About .00004% of the world’s population will undergo a similar treatment.

One of the lumen ports draws the blood out of Garrett, through a clear filter and into the machine. It works its way down into a large impeller spinning at about 1465 rpm. As the plasma is pulled from the blood cells, it is put into a container. The blood then is mixed with the replacement plasma surrogate and sent through another filter to them mix with some other key ingredients and into Garrett via the other tube. 130% of the blood is “cleaned” this way, or one and one-third times. This will happen four times over as many days.

About 4” of tubing about the size of a child’s juice straw extend out of his neck and catches on everything. He has trouble moving his neck around without discomfort and is afraid he will accidentally pull it out during the night. The biggest risk to the site, quite frankly, is blockage or infection.

The first round didn’t go flawlessly, but did get done. The lines blocked with coagulation a couple of times and one of the lines got kinked and stopped the flow. One blockage took nearly 30 minutes to clear, with Garrett holding his neck at a 30 degree angle while they worked to clear it. It was dang tough to watch and he was plenty played out and cranky by the end of the day, but he earned it. He was running a temp by the time it was done though, and that’s a little worrisome.

Tomorrow will resume more anti-rejection infusion through the normal I.V. in his arm, and the second round of plasmapheresis will take place at some point along the way. It’s not going to be an easy few days, as the process requires a lot of lying in bed not doing anything and being uncomfortable and scared. But we have to hold onto the blessings that we learned on Friday last. The coronary arteries looked great! Coronary Artery Disease of the Transplanted Heart is irreversible. What we’re fighting now is not.

Garrett got a visit from his "cousins" Lorin and Maggie today. We love them so much. The nurses Garrett had today were also outstanding and truly helped his mind set. When he got back from the surgical procedure, his room had been done up in pictures of bull riders and biblical expressions. On the outside of his door were two printed sheets. One displayed a photo of a PBR buckle that had the inscription “Cowboy Up”. The other simply said “Cowboy Up or don’t come in”. That pretty much says it all. Enter with a positive attitude or don’t drop by. We cannot afford to allow the poison of doubt enter the room.

Tomorrow’s a new day with new adventures and opportunities for victory. Garrett and I talked about this for a while tonight. It may not seem all that obvious right now, but God still has control with His awesome mercy and love. Somehow the birds will wake up singing outside and we might as well join them.

Psalm 3:5 - I laid me down and slept; I awaked; for the LORD sustained me.

JD

May 24, 2010 - Game On!

2010-05-23T23:49:00.004-07:00

We have settled in for night two in the Tactical Operations Center, tour two, midnight shift. Area of operations: Cardiac Unit, The Children’s Hospital.

Our little gladiator had a relatively good day. He was able to eat a little breakfast, more for dinner and several tacos for supper. Everything stayed down, and that was a blessing. A few visits from friends and family today helped keep his mind from too much focus on the situation, and this too was a blessing. We took a little walk outside but he petered out pretty quick. But it was a beautiful day and the sunshine and fresh air was great for the soul.

One of Garrett’s surrogate sets of grandparents showed up this morning with good coffee, bagels and fruit. It was one of the best breakfast’s I’ve ever had. After Kathy graciously took the first watch last night I got some sleep for the first time in a couple of days. Sometimes it’s easy to forget how a few hours of uninterrupted sleep can help recharge the batteries. I’ve got it tonight and she and Jessi are across the hall in a family sleep room.

A very special gift today came in the form of our blessed Greenwood family. They really cheered Garrett up. During the week of the second anniversary of Nicholas going to be with Jesus, they put their own pain aside and reached out to us. We’re more grateful than I can express. I'm quite sure one of the reasons God chose Nick, is because He knows the incredible love this family has for others. They arrived this afternoon bearing a bouquet of flowers with a butterfly. The butterfly has a very significant role in this story and I will explain that sometime down the road, but suffice to say we are surrounded by angels tonight.

We also got a visit from one of Garrett’s very best friends in the world. He brought the tacos, which is Garrett’s favorite food. Best buddies always know that kind of stuff. Just the ability to laugh and joke around with friends probably did more for him in a short time than all of the medicine did all day.

We also learned today of another little 8 year old boy who just got his second heart, almost identically to Garrett’s situation a few years ago. The family is petrified and we have given our blessing for the family to visit with us. We can’t feel their pain, but we can sure come close. If we can do anything to help them understand the road, we will. Please keep them in your prayers.

The transplant team explained a little further today what is most likely happening right now. The rejection he’s fighting is still the same one that brought us here in early April. The first round of infusion definitely knocked it down, but not out. It slowly festered undetected until the biopsy. That procedure was enough stress on Garrett’s body for it to show its ugly face in earnest again. The operational plan is not completely set, but we have a pretty good idea of the mission.

Most likely Garrett will undergo yet another surgical procedure in the morning to put a large straight-line tube in his neck that will facilitate at least two separate chemo-type infusions and possibly actual chemo. It will also be used for the plasmaferesis. They also related that it may even take a third try to make this happen, and he will most likely have to have another biopsy in a couple of months.

Garrett is plenty scared right now and said to me tonight, “I don’t even remember what my home looks like. I just want to go home.” “Daddy, why do I have to get sick in order to get better?” “Do you think Jesus is trying to send a message?” Without a doubt Jesus is sending a message. He knows what is best and is obviously using Garrett for His glory. I assured him that Jesus is not mad at him, and he has done nothing to deserve any of this. He is actually very special because God entrusts him with such a powerful mission.

He’s resting now. He was feeling a little poorly tonight, so I’m glad he seems to be sleeping quietly. As I sit here watching him doze, I thought of Ret. Army Lt.Gen. Hal Moore’s number one leadership principle – “Three strikes and you are not out. There is always one more thing you can do.” That is where we are right now. There will always be one more thing, and after that, one more. We love and ache for him so very much it's as if a sword is being thrust through us as well. Watching your child, day after day hurting and scared tears at the very fibre of your being. The temptation to mope and brood is so strong, but we will not weaken, nor will we display anything but a positive attitude. Anything less is inviting failure and complete victory is not optional. There is no kidding around about this one. We are in a battle and it’s game-on.

Tomorrow is a new day. It will try to have us be full of trepidation, but we will arm ourselves with the power of God and the warrior spirit of one bullhide tough little cowboy. He may have scored 99pts on Bodacious the other day, but now he's pulling his rope on Mossy Oak Mudslinger. We will continue to Cowboy Up. He does.

End your day on your knees, and I promise you’ll land on your feet in the morning.
God bless you.

JD

Back In The Hospital

2010-05-22T22:14:00.004-07:00

Life is a conundrum. It surely is full of questions.............

I'm at a loss again. This is tough to write, but so many of you are waiting to hear. I have told only a few that I had a sixth sense that something was up with Garrett, as I've noticed some very minor changes since I saw him last week.

We found out this morning that the biopsy came back and it is not good news. Scoring the numbers from 0-4 with 0 being perfect, Garrett's tissue pathology scored at 3+. We have had the wind kicked out of us right now and are trying to catch our breath. While the coronaries look very good, the rejection has not been stopped. In fact, it is very bad they said. Garrett was admitted to the hospital again and must undergo another series of anti-rejection infusions plus a process called plasmaferesis, which is like dialysis. We don't know how long he'll be in this time, but it looks like at least a week. He has to undergo another surgical procedure, this time to put a large shunt line in his neck, directly to his heart. The infusion meds they're going to use are stronger than last time and we can't forget how bad he reacted to the last one.

We'd asked if he's safe to wait until Monday, and they initially said yes. They can't do the surgical implant until then anyway. He's been sick today from yesterday's biopsy and we were hoping Sunday he'd feel better. I just wanted him to have one more day of not being afraid before we jerk the rug out from under him again.

We weren't going to tell him until Monday morning. He was fortunately sleeping when they called this morning, which gave us time to dissolve and re-build our composure. But, he’s been throwing up all day and running a low grade fever and that tipped the scale. They believe the rejection is coming on very fast with a fervor right now. This will surely break his heart because he thought the worst was passed this time.

By 6:30pm we were headed back to the emergency room. It took a little longer to get going because I was trying to get our things together in between holding him while he threw up. Once here, it took 4 tries in different locations to finally get an I.V. started because his little veins are so scarred. He gave a "Cowboy Up" bracelet to the nurse who finally hit home. She was the third one to try. It's 11:30 now and we finally got settled back in to the cardiac critical care unit. Kathy and Jessi had actually headed home this afternoon to see Levi and let Kathy spend the night in her own bed for the first time in a month and a half. It wasn't to be. She scooted right back up here and met us at the hospital.

He got round number one tonight. He was very scared and cried like he had a right to. He told me again that he doesn't want this to be his time. He wants to get well and go back home. But like the little fighter we all know he is, he told me "daddy, I'm not going to quit! We're going back into battle again."

I know that God has something very, very special planned for this little boy, I just don't know what it is right now. All he wanted was to go home for his birthday in June. Now he'll be deep into round 2 of a very nasty fight.

When I find the words from God to explain further, I'll put something on this blog. We just ask for continued prayers for patience, strength, wisdom and grace. We are still in this fight and will NOT let the bastard (satan) win.

Thank you for your blessings.

JD

"evil prospers when good folks do nothing"

May 21 - Finally Some Answers

2010-05-21T22:45:00.008-07:00

The day we’ve been waiting for has now come and gone. We now have some answers to lingering questions. While some still remain, mercifully it's obvious that Garrett's heart is healing and now, so is mine and Kathy's. Today, he Cowboy'd Up and then some. This boy has GRIT!

Tonight folks, we are faithfully confident that we have received what we have been praying for. Today was victorious, but not perfect. While we have a journey yet to complete the outlook is good. Garrett is now asleep once again beside me, and for the first time in a few weeks he doesn't have to worry about the biopsy. It's over. He is real uncomfortable with a lot of pain from the incision but his mind is quiet allowing him more peaceful rest when he can sleep. At least for now, he's not scared and I am grateful.

I woke Garrett at 4:15 this morning to let him have something to eat so he wouldn’t have to be so hungry all day. 5am was the latest he could have anything in his stomach before surgery. Of course that had to have a funny twist to it, too. Garrett and I were both up past 1am and our brains were moving like molasses in February. I poured him a bowl of cereal and being in an unfamiliar kitchen, grabbed a bowl of what I thought was sugar, putting a healthy dose on top of his snack. After taking one bite, Garrett’s face contorted to look like a freeze-dried shar pei puppy. I had unwittingly dispensed salt over his rice krispies instead of sugar! After we got the nasty taste out of his mouth, we both laughed our tails off. Anyway, he eventually got a “real” snack and we went back to sleep.

At about 8am the hospital folks called and told us they had an earlier cancellation and asked us to come in right away. This was good news! We hustled around and as we were heading out the door Garrett gave a big sigh and firmly stated “Well, daddy. I’ve got another bull to ride. Let’s go.” What a warrior attitude!

During the preparation he began to show his trepidation in earnest as a tear slowly rolled down his cheek and he said again that he just wanted to go home. But true to form, he stayed the course but demanded that he had his Ralph bear and something of Jessi’s with him when he went in. He said he wanted his baby sister by his side.

One of the surgical nurses came in and gave him a cocktail to settle his nerves and that helped. She told us that Garrett is well known there and they have discussed his distaste for needles. Apparently, during a past biopsy, Garrett came around as they were about to start the procedure and “decked” one of the operating room staff. She laughed and said “that boy really hates to see anyone come at him with a needle”. Garrett never remembered that and none of us knew that story until today. Wow! Now that’s a warrior mindset. Folks, it's just not safe to approach a wounded bobcat! Ok, nurses. Whadyalearn?

I gowned up for the trip into the surgery room and we made the long, short walk. When I laid him on the table today and they put the sleepy mask over his mouth, he looked up at me and the tears flowed. I leaned in very close, took that first tear and softly sang “I can only imagine” to him until he fell asleep. It never gets any easier.

When Kathy and I walked out into the waiting room we were met there with a beautiful surprise. Nicholas Greenwood’s mom and dad had come down from Ft. Collins to be with us. This is the incredible family I’ve written about in the past, who lost Nicholas in 2008 and unselfishly donated his organs to other children. We spent the next few hours with them catching up and were so very blessed by their company. Nick’s dad, Bill, joined us all in prayer for Garrett and it was truly a “God” moment. They are so inspirational. They started a non-profit, Christian based athletic program to honor Nick and call it G.R.I.T. See it at http://www.gritwrestling.com/
We're truly grateful for their company today. What an amazing family.

When the procedure was done, the doctor came out to us. The fears we had were calmed when she spoke, and Kathy finally stopped shaking. Garrett did great, and his heart is healing. The coronary arteries look fantastic and three chambers of his heart are functioning very well. One of the left chambers is producing really high filling pressures, which over time if not corrected can cause issues with his lungs. But the doctors are not surprised, because he was so sick. They think he would have registered at about a 21 pressure a month ago, but they couldn’t do the cath then as it was unsafe. Today he was measured at 14. The target range is 3 to 4. This could explain the still increased heart rate. She said it could take up to a year to recover fully based on what they see, and reiterated that he was very sick when we first came in. They don’t even do a biopsy and cath procedure as a general rule for most rejections, but Garrett’s was so significant that we needed to do this to be sure he is healing.

All we’re waiting for now are the results of the biopsy itself. That will tell us how the cells look microscopically and let us know the damage the cells may have, and/or if the lymphocytes are playing nice now. We’ll know maybe as early as tomorrow, but no later than Monday. Again, we are faithfully confident that the results will be positive.

When Garrett came around today he was in a lot of pain and had a very sore throat from being intubated. He threw up really hard and that didn’t make it any easier on him, but all he could muster to ask was “what were my numbers” and “when can we go home”. I’m very proud of his demeanor today. He just doesn't weaken. He really is a tough little cowboy. When he was awake later and understood what the doctors saw today, he said “well, I guess I scored a 99 on Bodacious today”. Bodacious was the badest of the bad rodeo bulls for many years.

After 2.5 hours in surgery and several more recovering, Garrett was able to keep food down and get released to go back to his aunt’s house. He has to wear a Holter monitor for 24 hours. It’s a portable device about the size of a walkman that records electrical impulses of his heart function because there’s still the chance that his heart rhythms were disrupted by the procedure today.

Just before he went to sleep tonight, Garrett asked me “daddy, why wasn’t I born normal”. That’s another one of those questions I just don’t have answers to. No earthly man does. Only God alone knows the reasons for the way things are, and the way they will be. Why did Darren go home? Why did Nicholas go home? Why was Megan go home? All we can do is to be committed to the belief that God’s plan is perfect. Garrett was chosen to be a very special child for reasons only known to God. When he then asked if being special meant having to go through pain, all I could do was relate the pain that Jesus went through for us and how He is the most special man who ever lived. He never promised it would be easy. He just promised it would be worth it.

My son is traveling a trail that most will never know. I'm blessed to follow him because I do believe God is using him for something truly great. He has already done more for God in his short life than I could ever imagine. The blessings we’ve received throughout the journey, the support system, spiritual connections and miracles are often more than I am really able to comprehend. It hasn’t been all fun, but it sure is a remarkable voyage.

When we know more, I promise to share.

JD

May 21st, 1:00 a.m.

2010-05-20T23:34:00.004-07:00

Garrett is finally asleep. He's been pretty keyed up all day, worried about tomorrow. He called me at work today and his tone was different. He started to cry and said "daddy, I need you". Say no more. I cut out of work early and got to him by about suppertime. He ran to me and nearly squeezed the air out of me, and didn't let go for the longest time.

We grabbed our gloves and threw the ball around for a bit and then he just wanted me to hold him. We laid in the hammock for a long time and then he got a call from his beloved teacher who has been so incredible to him this year. Her timing was perfect, as were "auntie Barb" and a few professional bull riders who called to pray with him and offer encouragement. Those calls helped a lot.

We later retired to the basement to watch baseball highlights together, which is what we've always done at times like this. Baseball and rodeo have always been a part of our therapy. After a little while though he finally turned to me, told me he was so scared and started to cry. He held on to me, and I comforted him while he whimpered and said "daddy, I just want to go home". Kathy and I both just held him and tried to love the bad feelings away. We said our night prayers and in the midst of his overwhelming fears his prayers were not for himself, but for his cousin Levi, who is in stage 4 cancer. Levi is like a big brother to Garrett and also very, very sick.

It really pulls at my gut to see him go through this all over again, but these are the cards we're dealt right now. We prayed and talked for a long time about how much he is loved, and how so very many folks are praying for him. Everything is in God's hands, and there is no more perfect place for us to be.

By 10am we'll be checking in. By 1pm he'll be in surgery for the 24th time in his short 10 years. We will claim victory in the name of Jesus our Lord. Everything will be just fine. Our little gladiator is ready for battle.

JD

May 20. 2010

2010-05-19T23:46:00.004-07:00

Today, like many others lately, just couldn’t end without some minor catastrophe of sorts. Keeps us from getting bored, I guess. But like the others, big or small, we beat the odds.

Jessi had spent the afternoon with our wonderful friend and neighbor lady with whom she has grown a very beautiful relationship. Christina and her family have been a God-send to us during this part of the journey. She takes care of Jessi when I cannot be around and Jessi loves her dearly. They build projects, play with dogs, and conduct reproductive studies of the barn cat’s springtime ritual and groom horses. Today they decided to surprise daddy by cleaning the house for me. This was after Christina shadowed Jessi at her school “field day” activities and watched while Jessi won 5 ribbons.

When I arrived home, Jessi went out to check on the horses while we visited. Moments later, my Tinker (Jessi’s pet name) came limping and whimpering into the house. She had stepped on a nail in the feed bunk when feeding carrots to her horse. It was a pretty good wound, too. She was bleeding from the hole in her foot and quite scared. Christina sprung into action immediately, which allowed me to sneak out of earshot to call our pediatrician. Dr. Gilroy is the only children’s doctor I know today who allows me to call her at home. She saved Garrett’s life two years ago by discovering the enzyme imbalance that led to the discovery of his advanced coronary artery disease, and has stayed in close contact with us since. She is a gem! Well, she understood that Kathy and Garrett are in Denver and I didn’t know where the shot records could be kept. This angel of mercy did some research and called me back assuring me that Jessi’s Tetanus shot was up to date.

Needless to say, Jessi will have a sore foot for a few days, but after a good cleaning out and lots of soaking; I’m hoping it won’t get infected and need another trip to the hospital.

It’s amazing the thoughts that can race through one’s head at times like this. I have to be with my boy on Friday morning. He has his double biopsy surgery and I promised him I would be there as I always am, to wipe away that first tear, to be the last person he sees when he goes to sleep, and the first one he sees when he wakes up. But I couldn’t turn my back on my little Tinker, who is the most loving child I’ve ever known. If she needs to go to the doctor and required follow up because the wound was worse than we thought, it would compromise my commitments to Garrett. But somehow, I’d make it happen. I can promise you that!

The days lately have been filled with trying to stay busy enough at work to keep my mind from racing. My nights are rarely for sleep, and mostly for praying, thinking too much and hoping. Knowledge can be powerful, but then too; too much knowledge and not enough at the same time can be terrorizing. Garrett is feeling good, and that’s good enough right now. But I’ve also noticed a very subtle change in him when I was there last. That, coupled with the poor blood work and no change in the echo gets my mind racing. DANG IT! I’m the one who knows we have to ride this bronc one jump at a time. Yet my mind keeps sneaking in what I’ve learned recently about medical statistics regarding similar cases. I just have to know that Garrett has never followed the “statistical line” his entire life. I know that God has blessed me tremendously with the willpower to stay this fight and never quit. The doubts and fears that sneak in are hateful and even in the darkest moments of this fight, when I feel like I’m out of ammunition and have no place to hide, I have called out to my God for guidance and help. I’ve prayed until the world around me became no more. I was completely alone, if for only a moment, with my entire spirit, body and soul beseeching God Almighty to raise us from this battlefield to victory. Never once have I heard his voice, not as the voice of a human telling me what to do. But He has opened my eyes to see His mercy and love. I also know for certain that He has not abandoned or forsaken me. And He knows that for me and mine, we work for Him.

Friday late we will slowly begin to get answers to what seem like just so many questions. How much damage has been done? Has the rejection been caught, and killed, in time. Do the new lymphocytes rebuilding his immune system have and understand the new battle plan and recognize that Garrett’s heart is an ally and not an enemy? We will not weaken. We enter into this new mission completely convinced that God has given us everything we need to be successful for Him. This next week will be filled with emotion. One of great joy and hope, or one of being momentarily stunned and needing to gather our thoughts for the next phase of the battle. Either way, I will be with my family through the week. I will not leave them. We will accept the results, knowing there are but two or three options to continue the fight, and believing, as I do now, that we will be victorious.

When I know more. I will let you all know. Your prayers help sustain us, and for that I'm very grateful. I have a feeling though, that this tough little warrior will put on his coat of God’s armor as we pray prior to surgery, and he will emerge triumphant.

You give me your shield of victory,
And your right hand sustains me;
You stoop down to make me great." Psalm 18

JD

May 17, 2010

2010-05-17T23:20:00.003-07:00

Jessi and I got to spend a couple days with mommy and Garrett this weekend and are now back, getting ready for work and school again. It was a good few days, though, but just too short. We took a little walk at a nearby pond and just enjoyed being together while he's feeling good. He had some pretty wicked nightmares again this weekend, but we worked through them by watching baseball or rodeo like we always have until he could fall back asleep. As the week progressed, he's bound to get more anxious about the procedure/biopsy surgery. I'd sure be grateful for any extra prayers you have laying around for him, Jessi and Kathy. This will be a long week and weekend until we get the results early next week. Garrett made me promise at least 4 times that I'd be back with him in time for surgery.

His last checkup before surgery was this morning. Everything still looks pretty good. He's lost a little weight, but not much. Although there was no change in his echo, it's good because it didn't get worse. His bloodwork is still all over the map and while we want to know why, we're hoping it's just because his body is trying to heal. When they run the double biopsy this week, they'll get a real good look at this kidney function and we'll know more.

I tried to break up the monotony this weekend by building the kids a roping toy from PVC tubing. It'll give him something to do in the backyard. But I don't think it was near the hit that his other surprises were. He got a box full of goodies from some great folks, including a bunch more baseball cards (he loves those), books, signed Boston BBall and even a rugby ball from a couple in Australia! The love this little guy has garnered is really amazing. Folks are so kind.

When we know more, I'll be sure to post something. I've added a picture tonight of the bracelets his little friends Chris and Joe designed. I'm told they are a big hit in the area and really make Garrett feel "special" to know folks are wearing them for him until he can come home. He really has some tremendous friends, all good soldiers of the Cross, too.

While you're taking time to pray this week, please ask God to comfort the family of Dale Goodell. Dale was a good man and friend of mine whom God called home early this morning. He and Garrett shared similarities, too, as Dale was a bone marrow transplant recipient. He finally lost a lengthy battle that he fought so well for so long. He's at peace now, but those of us left behind will miss him dearly.

This week is a big one. There will be lots of big prayers for the King of miracles to heal a little cowboy so he can come back home with his family. The victory is His, and we ask for understanding and grace as we try to accept His will.

God bless,

JD

May 13, 2010

2010-05-13T22:58:00.003-07:00

“Dinger” had another checkup today and his heart rate was down to 116. That is the lowest it's been yet. We're not yet to our goal the 90's, but we're sure a whole lot closer than the 150's a few weeks ago. Kathy said that there was no change in his echo this time, but at least it didn't get worse, and the gallop in his heart seemed a little softer today. The waiting game continues, but we're only days away from having finally some answers to so very many questions.

He sounded good on the phone today, if maybe a little apprehensive about his surgery next week. While still missing his friends and animals and just wanting to come home, he's in pretty good spirits. I told him that I’d take him to a Rockies game the week after, when he’s ok to go. He thought that was just pretty okay! That boy love’s his Rockies. He got the nickname “Dinger” from his team mates a few years ago because he was hitting so many home runs, and it stuck because “Dinger” is also the nickname of the Rockies mascot.

I talked to Garrett for a while today about the biopsy. I could tell he needed to be placed at ease that everything will be ok. I reassured him that I would be with him next week, just as I always have. We have a deal and it’ll always be that way. I’ll carry him in and lay him on the table, kiss him and tell him I love him, wipe that first tear from his cheek and stay by his side while they give him the sedative. Only once he’s asleep will I leave him. That’s my promise to him. I’ll be the last face he sees before he sleeps and the first face he sees when he wakes up.

Dinger continues to have night terrors/bad dreams in which he reacts violently in his sleep, screaming out incoherently most of the time. Sometimes you can understand him asking "please make it go away". You can’t wake him. We’re so grateful that for the most part, he doesn’t seem to remember the dreams when he wakes up in the morning. Tonight Kathy said she had put a small mattress on the floor and was letting Garrett sleep on the big bed next to her. She said he “needs so much room” when he starts kicking around. Isn’t that just a mother’s love to give up her bed to her baby boy? She is something so special. Someday I hope to give her a weekend at the Broadmoor with a big, soft bed where she can just stretch out and be pampered.

I spent a lot of time last night thinking back two years ago when Garrett and I watched a news story about little Nicholas who was terribly hurt in a farm accident at his home near Ft. Collins. We were about two weeks out from Garrett’s heart transplant, and when we saw the story, Garrett wanted to do something for Nicholas. The next day after his checkup, we dropped some gifts off at the ICU where Nicholas was clinging to life. Before we left the hospital, Nicholas’ folks found us and wanted us to meet Nicholas. I remember going into his room and seeing this beautiful little boy fighting for life, plugged into so many machines….much like Garrett was only several days earlier. We all laid hands on Nicholas, held hands and prayed. There was such a sense of divine compassion and love in that room. It was truly a very spiritual experience.

We stayed in close contact with Nicholas’ family through many days, but God called him Home. We were impacted deeply by their loss. I didn’t understand it then, and still don’t. Kathy and I attended the funeral and spent time with this family we hardly knew, but yet knew so well. At their request, I helped bury their son in the cowboy tradition of helping your neighbor bury their lost family members. With each shovel full of dirt, my heart weighed so heavily for Nick’s mom and dad. They shared so much in common with us and the scene could easily have been turned around. Nick was only 6 years old. They called us the day Nicholas died and told us that because of Garrett, they decided to donate Nicholas’ organs. A little girl in the mid-west received his heart. Beauty in the midst of tragedy and another family gets another chance because of selfless love.

The images of that time are indelibly branded into my memory. I’ve been given so many extra opportunities with my son and I will never take them for granted. Life is so very precious, and the life of a child is the most precious of all. Yesterday, Jessi received a year-end award at her school for being the “Most Respectful Student” in her class. I’m so happy for her and the pride I feel is immeasurable. We try hard, Kathy and I, to raise our children the way God wants us to. The bible tells us to “train up a child in the way he should go: and when he is old, he will not depart from it”. I know Nick’s folks believe the same way we do. For reasons known only to Him, God has chosen to keep Garrett here. As a daddy, I am so very blessed and I’m more committed each day to serve our Lord faithfully and tell this story of His great love.

Tonight my prayers are for all of you. Just like the great friends I got to see today at different times, without your prayers and friendship our journey would be so much more difficult. We’re not unique in this situation, as there are so many families like Nick’s out there who are fighting to keep their babies for another day. We’re blessed by all of you. Thank you. You’ll never know how much your prayers are felt and your kindness helps carry our load. God bless you.

JD

May 11, 2010

2010-05-11T21:48:00.004-07:00

Jessi and I are back tonight and as luck would have it, we forgot her "binky" in Denver. In years past this would have been a tragic event requiring a full-blown tactical call out, however she is maturing and was able to settle in tonight next to daddy with just a stuffed cow.

Garrett continues to have good days and we feel so very blessed to see him happy. Kathy and I even think this little distraction has changed his personality a bit. He is less crabby with little inconveniences and seems to take things with a much more "water of a duck's back" kind of response. I'm so proud of him. He just doesn't go through life with his lip stuck out feeling sorry for himself.

The biggest daily bump right now is sleep, or lack-there-of. The last few nights I've had to wake Garrett to stop his nightmares. He's really having a lot of them again and they always have to do with the hospital. They’ll get more intense the closer to the biopsy we get. I know they don't hurt him physically, but it breaks my heart to watch and listen as he goes through terrible dreams, calling out, crying and kicking the covers off. Little kids should be dreaming about playing baseball and other such fun things. He had just gotten to where he was starting to go to sleep easily and rest peacefully. I hope and pray we can overcome this again.

After spending the best part of the morning with Kathy going over a new crop of hospital bills and trying to figure out how to rig a lottery win or sell my body to science :-), we settled in and spent a few more hours together, just the family, before Jessi and I had to leave again. I know it’s not that big of a deal because lots of families have to spend time apart. But this family is mine and I think they’ve had their share of uneasy separations.

Driving home tonight, Jessi fell fast asleep in the back seat of the pickup and I got to praying and thinking, as I often do on these trips, about the past 10+ years. Just for giggles, I put pencil to paper in my head and figure we’ve driven more than 72,000 miles back and forth. How blessed are we that we’ve never had a wreck? Oh, in that first year or so when I was driving to and from work and our little apartment in Denver every night, I woke up in the ditch a time or two, but my guardian angels always kept the rubber on the asphalt. We’ve been faced with, and beaten, all the odds time and time again. My little tribe of warriors are pretty daggone hardy and God continues to smile on us every mile of the journey.

As Jessi and I said our prayers tonight, I remembered what Jesus told us in Matthew…”Whenever two or more are gathered in my name, there am I in the midst of them”. As parents, we’re called to lead our children to holiness and the only way to do that, to sanctify this mission as I see it, is to keep Christ in our daily walk together. I’m grateful that He has allowed me to walk this trail with my family, with Him keeping us safe and knocking the edge off of our fears. I honestly don’t know how anyone can take on these challenges without Him.

JD

May 10, 2010

2010-05-10T23:47:00.003-07:00

Garrett had a really good day again! We spent several hours at the hospital early then had the obligatory hours-long wait for a call late this afternoon to give us the results of his tests. Everything is just where it should be at this point and his echo again showed some improvement. The significance of him getting stronger right now will be telling when we get to biopsy.

During the first few days in this chapter of the journey, Garrett’s heart beat so hard it literally would rock his whole body side to side. Nurses didn’t need to hold his wrist to check his pulse; they could watch the arteries pulse in his neck. Things are certainly a lot better now. As I lay next to Garrett tonight, I can still feel his heartbeat, but it’s not nearly as hard or animated.

Normally on Mondays after the appointment, I head back “home” so I can get ready for work again. But this time was different. Last week when I left, Garrett was upset and told me “daddy, you always seem to leave when I’m feeling good”. That comment stayed with me all week and I decided that if he was still feeling good after his appointment, I would stay one more day just to be with him and celebrate. Fortunately my bosses have allowed me the flexibility to do just that and I have a great team of folks who support me. So tonight we were in our basement hide-a-way and had a “family night” for the first time since he got sick.

We decided to watch a movie and picked “Radio”. While the story doesn’t mimic our journey, it did drive a point home. In the movie, Coach Jones’ commitment to an exceptional young man drove him to choose between the job he loved and a boy who needed him. As you can imagine, he chose to mentor Radio and walk away from coaching full-time.

While it’s not realistic in my world, it reaffirmed my desire and commitment to take these extra days once in a while and enjoy Garrett, mentoring him as a daddy should, when he’s not feeling so sick and not having to leave him as soon as he is “feeling good”.

Too often in our worlds we confuse “needs” and “wants”. Because of the hand that’s been dealt, we have spent too much time living apart in different towns over the years. The disruption in daily life seems almost normal in a way. We spend our time living out of a suitcase, trying to find continuity as a family unit while surrounded by others; trying to keep up with bills here when all the mail goes there; trying to find 10 minutes to be a married couple and have a conversation when we don’t have anywhere we can call “our own space” to do so; and all the while trying to build a sense of normalcy that every family unit needs.

I’m not going to pull a Coach Jones and quit my job, but I am trying to keep my “needs” and “wants” lined out if possible. Right now, my children need me to be close, Kathy needs her husband to lean on and I need to be with them to keep my sanity.

Because of Garrett’s health problems, I’ve spent more time with my kids than most dads get to at this stage in their life. Granted the time hasn’t always been fun time, but any time with your kids is time well spent. Before he fell asleep tonight Garrett said “daddy, I can’t wait until we can go home”. Well I got news for him, “home” is where the heart is, and mine is right here.

Have a very blessed day.

JD

Mother's Day 2010

2010-05-09T09:45:00.002-07:00

Happy Mother's Day!

I'm dedicating this entry to all mothers, with particular attention to one very special mother, of one very special little boy. A few weeks ago, Garrett asked "mommy" what she wanted for Mother's Day. With her voice cracking, she told him that all she wanted was for him to feel better. She got her wish. Garrett is really feeling good compared to where he was just a short time ago. He’s had several good days in a row now and we’re praying for many more to come.

After spending some days away from the family, I'm finally back in the arms of those who bring me sunshine. Garrett and Jessi curled up with me tonight after playing all evening and getting everything out of the day that they could. Just before he fell asleep, Garrett tucked in close and said he's really praying that his biopsy with score a "zero". With just a couple weeks to go before the procedure, he's starting to worry and wonder. But he's been steadily feeling stronger and looking better, too, and these signs are so important especially in light of the gallop that has returned.

The biopsy will tell us so much more than we can know without it. Sometimes a recipient can be asymptomatic until a rejection is out of control. That's why the frequent check ups now. What we will soon know will be revealed by a standardized 0-5 scale for interpreting the biopsy results from Garrett's transplanted heart tissue. Acute rejection is a common problem after heart transplantation, particularly early after transplantation, but this far out it causes more concern. Most cases are due to cellular rejection but antibody-mediated rejection can happen and is a less well understood, less easily diagnosed and potentially more dangerous. The better he feels, the stronger he gets, the better he can fight any problems that might crop up. For now though, he's feeling great and that's such a positive sign. And it's the perfect Mother's day gift for Kathy. She’s a momma who deserves a beautiful day with her healthy, happy, beautiful children.

I think God made spring just for mothers. He chose a very blessed and special mother to give birth to our Savior, when He could have chosen any method to put Christ among us. God knew that we needed that incredible mother connection to bring His whole Light to bare. That birth was the beginning of our salvation. Jesus' birth made it possible for Him to walk among us and complete the mission that would make everything new again. This event is celebrated every spring with Easter, when the flowers bloom, all the animals bare their young and new life abounds. None of it is possible without mothers. So at a time when we feel better because the winter winds are gone and the warm sun has returned, we celebrate a time for all mothers. They are forever connected with new life.

In Garrett's case, his momma knew before he was born that he was sick. His birthday arrived with a combination of joy, pain and terror. The next 10 years have been filled with challenges and heartache, the fear of the unknown future, and the tremendous joys that only a mother can know. She's had a baby girl who was born 2 1/2 months early and spent the first month of her life in the hospital. She never got to bring a baby home from the hospital the “normal” way, but she’s never felt sorry for herself. She’s always just been so grateful for the incredible gift of giving life that God allows only mothers to know.

Your momma has stayed by your side when you’re sick. She’s kissed your “owies”, rocked you, sang to you, read to you, washed your clothes, tucked you in to bed, cooked for you, comforted you when you had your first broken heart, packed you to countless games, rodeos, parties, parades, school events, church outings and doctor visits. All she’s ever asked is for your love and respect. Oh, she’s asked you to clean your room and help with the dishes once in a while, but she’d have given you her last dime, her last scrap of food and her only jacket. She’d give you her very life, because she loves you that much.

Give her a hug today. She doesn’t need flowers, cards, gifts or a once-a-year house cleaning. Those are nice, but she really just wants your unconditional love, because that’s what she’s given you…..all these years.

Happy Mother’s Day. Every day should be so special.

JD

May 6, 2010

2010-05-06T22:18:00.007-07:00

Checkup days are always preceded with anticipation and typically followed by exhilaration, trepidation, disappointment or relief. Sometimes it’s a surplus combination of all the above. Today was one of those days. Garrett has his definite “favorites” when it comes to nurses at TCH. When it comes to drawing blood, Chantelle wins hands-down. His fingers and arms are so laden with scar tissue that it takes just the right touch to open the wound enough to get a good supply for the sample without having to conduct second, third or even fourth attempts and subsequent needle jabs. The fact that she always brings a stack of baseball cards doesn’t seem to hurt, either. She happened to be off today and Garrett was not happy. She didn’t get clearance from him before scheduling her leave time.

The rest of the visit seemed to go without issue. He is now back at the same weight he was a month ago, his lungs, liver and kidneys seem to be working pretty well and his heart rate was in the 120’s. They said he looks good and is improving. By 5pm we hadn’t heard back on the echo report or lab results. That makes for a long day waiting for news. I’ve always felt that no news is good news, but mommy tends to think they're trying to build up their vocabulary and guts to tell us what went wrong. We were both right.

The echo showed that Garrett’s heart function has improved since Monday, which is great! But they also found a “gallop” rhythm. They haven’t heard that since he first came in when the rejection was at its peak and his heart rate was high. It stayed for several days then went away. The gallop rhythm means that instead of two distinct heart sounds, he’s got three or four. When combined with an accelerated heart rate, it could indicate potential heart failure. But it could also be just something the heart is doing on its own as it heals. For now, all we can do is ride out the next several days and see if he continues to feel better or starts showing signs of insufficient blood supply.

For now though, Garrett feels so much better than he did a few weeks or even days ago. Again, trying to figure out how he’ll be next week is like trying to herd cats. This will take time, lots of patience and a gentle approach with the ability to adapt quickly if needed. We just have to put the “what ifs” aside and simply enjoy his good days of victory.

I got to chatting with a friend of mine today about the time we've spent in the hospital over the years. It kind of goes like this: In October of 1994 I found myself in a bit of a predicament. I was laying out in a pasture by myself, about a quarter mile from a house, with my right leg pointing off toward left field and blood leaking out the top of my boot. A rope horse of mine had a momentary loss of anything resembling sanity and showed his new shoes to the clouds. Problem was, I happened to be in the middle of him at the time.

That little hickup commenced what would be an 18 day hospital stay complete with obligatory accouterments. Nice staff and all, but I made my mind up then and there that I would make a point to discontinue residing in such facilities in the future. Some 15+ years later, I've determined that God has quite the sense of humor. In the last 10 years alone, I've lost track of the number of nights we’ve spent feigning sleep in a hospital recliner next to Garrett’s bed. Looking back, I find it much easier to be the one plugged in to the tubes instead of keeping prayerful vigil at the bedside of a sick child. Worry seems to drain me more than injury.

In Garrett’s first year of life alone, he spent more than four months in the hospital. Over the years, we’ve celebrated holidays, birthdays, anniversaries and a 1st communion in a hospital room. We’ve laughed, cried, played, argued and even danced in there. We’ve watched countless baseball games, rodeos, football, movies and Dora the Explorer. We’ve studied, prayed, had church, authored letters and memos, work documents and thank you cards. We’ve experienced elation, fear, panic, dread, anxiety, appreciation, anger, joy and calm. We’ve made, and lost, new friends. We’ve shared in their joys and comforted them in their sorrows. We’ve been blessed with opportunities we wouldn’t otherwise have had because of this journey. And it’s all because God needs Garrett’s journey to help Him do something special. We don’t know what that is, but we’re keep praying for the grace to accept it.

If some part of this little expedition can be used to help someone, somewhere, then we’re hopeful our participation is adequate.

Still, I'd prefer a log cabin in the woods somewhere.

Be blessed. We are!

JD

May 5, 2010

2010-05-05T21:29:00.004-07:00

What a happy Cinco De Mayo! Garrett had yet another good day today. He felt good all day and his heart rate dropped into the 130's today and stayed there. He's been a little more tired today, but I think it's because we had a pretty big day yesterday. He was pretty exited when I spoke to him tonight. He got a very special visit and couldn't wait to tell me who came to see him.

Two years ago, Garrett got his 3rd heart during his second transplant surgery. His heart came from Darren Collins, and Darren's family has become as our own. He has developed an especially wonderful relationship with Darren's younger brother, Warren. Well, they were on their way to Cheyenne to visit Warren's older sister and dropped in on Garrett. The boys played catch in the yard and generally caught up. Garrett truly loves his "brother from another mother", and Warren shares that feeling.

Through the tragedy of losing Darren, Warren gained Garrett and Garrett gained Warren and all the girls! I've spoken often of God's tremendous love for us and never wanting us to be in pain. I honestly believe that in His infinite wisdom and perfect plan, our Creator does not allow something terrible to happen unless some good will come from it somewhere. Many times we will never understand or know what that good could be. But in this case, He has revealed to us at least some of the mystery in this miracle of life. The relationship we have developed with Darren's family has blessed us more than mere words can describe fully.

Many folks have seen the video about Garrett on youtube. That video was made by the American Heart Association at their request, to use Garrett's story to help raise awareness for heart disease research and promote organ donation. When that video was shown, at the "Heart Ball 2010" in February of this year before Garrett got sick again, Darren's family were special guests of the event and put an exclamation point on one of the rarely seen benefits of such a tremendous and selfless gift.

We met Darren's family almost as a fluke. It is unheard of for a donor family and a recipient family to be in the same hospital at the same time. Even more rare, would be the chance meeting in the same waiting room. They were there, praying for their Darren. We were there, praying for our Garrett. In His beautiful plan, he dampened the blow to all by bringing the two families together during a time of need and we have become very, very close. Last summer we gave them a horse to replace the one Warren had to leave behind when they moved from Cheyenne to the western slope. We share the same interests, love of the outdoors, love of family and our love of God Almighty. While Garrett can never replace Darren, I know it has brought them comfort getting to know and bring Garrett into their fold. They have given us a noble and unselfish gift by sharing Darren with us and giving Garrett another chance to grow up.

Kathy and Darren's mom are two kindred spirits who love, laugh and cry at times, together. When Garrett got sick this time, she was the first one to arrive at the hospital to be by Kathy's side during those first uncertain days. It was a 5 hour drive for her, and she was there before 24 hours had passed. While only God above knows the full meaning behind this journey, I'm so grateful for His willingness to share them with us in such a beautiful way. I know of no other donor/recipient family connection quite this special.

We share two children, literally, and we love Darren just as they love Garrett. I carry a photo of both boys in my wallet and have asked my dad to take Darren hunting in paradise. Only God could write a story this compelling. Regardless of what the future may hold, this chapter of the journey has given me a little glimpse of His stunning plan for us. Garrett and Jessi have new "brothers and sisters" to play with and to love as part of them.

It's springtime here on the front range. Even in the midst of our current struggle, we have been blessed with the beauty of new life as it saturates the senses with everything from litters of barn kittens to new wild flowers and baby calves sharing the same pasture. The robins have returned and are vocally claiming their territory as they prepare their nests for the baby birds we'll soon hear outside our windows during the day, and we'll soon go to sleep listening to coyote pups learning to sing. And the crescendo of today's songs echo with the sounds two boys make while playing together. Two boys brought together through tragedy, but focusing now only on their new brother and the joy they share. Good medicine.

Have a great tomorrow and enjoy this season that I'm sure was designed perfectly to celebrate life. After all, Easter signals the start of spring and there is no more important celebration of life.

JD

May 4, 2010

2010-05-04T21:35:00.005-07:00

Garrett had a really good day today! He felt good, even though his heart rate nearly reached 150 bpm today. Trying as best we could to "ignore" the heart rate as long as he's feeling good, we enjoyed the warmth of a beautiful spring day together.

The kids and I lay in a hammock together for a while and for some reason, we got the giggles. After a few minutes, none of us could stop. It was one of these precious few moments that we get right now, where God allows us to, for just a short time, completely forget the reason we're all together in Denver in a hammock. Instead, we just held on to each other and rocked gently in the breeze and laughed for no reason at all. It was incredible.

I decided to head back home today. Work commitments make it hard for me to justify being gone more right now since he's starting to feel better. I have promised them and myself though, that if he continues to feel good next week, I'm going to take a few days just to enjoy being there when we're not scared out of our minds. I don't want to limit my time with them only to those times when he's having it pretty tough.

As I got ready to leave this afternoon, Garrett and Jessi came up to me with puppy dog eyes and asked "daddy, can we play catch?". I don't care what else was happening in the world, I was not about to pass up that chance. I didn't care when I got home, as long as I got to work on time tomorrow. So we got out the gloves and threw the ball until mommy decided Garrett had been active enough for one day :-) He just needs time to be a little boy sometimes. That helps him heal as much or more than any medicine.

The kids cried when I left and I must have gotten dirt in my eyes because they got a little wet, too. I hate leaving them. Kathy's nervous for me to be gone, but we have to believe what the doctors are telling us. This will take time and patience. We don't know why his heart rate keeps creeping up, but he feels good today and that's good enough. There's more questions than answers right now. She called me three times tonight before they went to sleep, just to confirm that he's ok. I've got both phones turned up loud next to the bed and I'll come a runnin' tonight if she gets too scared. Sometimes I have to leave just to show them that I'm not too scared (right) because they're going to feed off of my reactions, too. As long as 'daddy' looks ok, then everything must be ok. Right?

As I pulled in close to home, I saw the neighbor lady's place with part of her gate down. I feel bad because I told her I'd fix her fence about a month ago, then this all started. Maybe I'll have time to grab the welder and head over there in the next evening or two and put up some pipe for her. Normally, my little helpers would be there under their own welding hoods to ensure my work is satisfactory.

The world keeps spinning regardless of our personal trials or victories. It just seems to spin a little smoother when we're enjoying victories more. Today was a victory. Garrett felt good. He doesn't have the energy that he did a few months ago, but from where he's been lately, it was a big step. From the fear of the unknown that seemed to take too much of our thoughts lately, these children brought us to a point of joy today that we needed. We enjoyed laughter for no reason at all, threw the ball together, and for a while we didn't worry.

The joy I get from my children and the lessons they teach me make me a better man. Even in the midst of trials, their selfless love and laughter shows the resiliency and innocence we all need to learn from. I guess that's why we should always make each day prayerful. Even the bible tells us to "Give thanks in all circumstances, because this is God's will for you". If the kids weren't thankful for the moment, laughter would not have come. Jesus told us in Luke to "let the little children come to me, and do not hinder them, for the Kingdom of God belongs to such as these"..."anyone who does not receive the Kingdom of God like a child will never enter it." He was telling us to follow their lead.

I owe my kids a great deal of thanks for giving me this gift today. They've been scared, hurting and displaced from their "normal" life over night. Garrett thought he was coming up for a check up and didn't get to go home again. Instead of feeling sorry for himself, he and Jessi just keep looking for ways to be happy. As adults, we tend to look at problems like a calf looks at a new gate. Dumbfounded and not knowing what to do next.

I got a message tonight from the hospital regarding Garrett's biopsy surgery. I'm assuming they are going to move it up sooner, because of where Garrett is right now and the fact that he's not improving as quickly as we'd hoped. I'll find out soon enough and won't tell Garrett until I have to. But tomorrow brings new challenges, so I guess it'll really just have to be opportunities for laughter and victory. I think that's what the kids would do. That's what I'm going to do for them tomorrow. I'm going to follow their lead.

Hope your day is victorious.

God bless,

JD

May 3, 2010

2010-05-03T22:14:00.005-07:00

After a fairly lengthy night of wondering, Garrett had his checkup this morning. There were no changes. So the good part, is that there were no changes. The disappointing part is that there were no changes. After considerable improvement over the past few checkups, we were hoping the trend would continue. It didn't.

We talked at length with Garrett's primary cardiologist, who reassured us that he was not overly concerned about Garrett's increased heart rate. What he eloquently reminded us was that we are not out of the woods. That's why they're keeping Garrett close, just in case this spins out of control again. Garrett has come a long way in a short time, but it could be months before we see any significant improvement in his heart function. And while we were not given any disturbing news, it was the first time that they have suggested they might move up Garrett's biopsy surgery. It is the only way to know the extent of the damage to Garrett's heart. Through pathology, they can determine if the heart is healed, healing, still containing infected cells and/or developing antibodies against the donor heart. This is a waiting game of ups and downs. For now, they increased Garrett's lasix to help him get rid of some fluid he's retaining, and some nasty stuff he has to take to fight thrush he's developed.

Tonight Garrett's heart rate got into the mid 140's, which prompted another call to the transplant team. With no other noteworthy symptoms, they won't get too concerned unless the heart rate exceeds 170. Disconcerting, but it's what we have to work with right now.

Garrett's well aware of everything that's going on and got pretty mad that his heart rate keeps going up. So we talked about what we are taught in Corinthians, that "these three remain: faith, hope and love. But the greatest of these is love". We discussed how our true faith is the confidence in our God, believing without seeing. Christ confirmed the blessings we receive for true faithfulness when He talked to doubting Thomas. Our faith works together with with hope, because we hope for paradise and being worthy of the promises of Christ. None of it matters without love. God showed His tremendous love for us, and we love Him in return. These three give us the strength to fight another day, to find victory in each day and to worry less because we know that God loves us more than we could ever love Him. This journey has given me, a daddy, so many opportunities to improve my own faith and to help my children develop their own walk. We will get better. Jesus' love sustains us. We have faith in Him, we hope to see Him in paradise some day and we thirst for His love to complete this unending circle.

Kathy tearfully told me tonight that all she wants for Mother's Day is for Garrett to get better. He will, mommy. He will.

For me, I long for the faith of the woman who only wanted to touch the hem of Jesus' clothing to be healed. That is strong faith.

Many thanks for the continued prayers for our little cowboy warrior and the family.

JD

May 2, 2010 (third post)

2010-05-02T23:01:00.005-07:00

How powerful is community? How powerful is God's love? No man could be more proud of what my children have done. Garrett's story has touched a bunch of folks. Tom Urbani, former Cardinal's pitcher wrote today "He's brought a whole community together. I'm honored to call him my friend....."

After reading my emails, I just had to share this picture. It brought me up.

Tom was referring to a car wash held today to benefit the High Plains Little League and Garrett. In the snow and cold wind, cars were lined up, I'm told. So many incredible kids braved the cold to show Garrett they want their friend back on the diamond. This picture says it all. What a great community. "Thanks" will never be enough.

May 2, 2010

2010-05-02T21:29:00.002-07:00

A short update tonight. We just got done praying as a family for strength, healing, and appreciation for what this journey is doing for us. We're closer as a family, we're closer to our God and we're being blessed each day by more folks who love Christ being brought into our lives.

Garrett's resting heart rate was up to 137 today. I phoned the on-call coordinator with the transplant team. Several phone calls and visits with cardiologists later it was decided to give him another dose of a diuretic. We're hoping that it's just side effects of the medicine he's on to fight the side effects of the medicine he was taking to fight the rejection. We'll find out more in the morning.

Kathy is very scared tonight. There's just so much we don't understand about why these changes are occurring again. I told the nurse today on the phone that I don't even trust my own instincts anymore regarding Garrett. Every time we think there is something up, they run myriads of tests only to come up with more question marks than answers. It happened in January of 2008 and we know what happened in March of that year. It happened in February of this year and he got sick anyway. Now in these past two days, my gut tells me that something is up again but the nurses are not overly concerned. It's quite a chess game. I hope they're right.

As Kathy quietly cried on my shoulder tonight, out of sight and sound of the children, I reassured her as best I could. I hope I was convincing. She deserves to rest peacefully tonight. Garrett had a few really good days and is probably just a little tired from the activity.

I had a brief conversation with a friend today and we discussed prayer. It's not "when we pray", it's a better question to ask "when don't we pray". Each breath of each day should be for God. To talk to Him like the friend He is. To cry to Him when we're scared. To laugh with Him when we're happy. To thank Him for every gift and to trust in Him that His plan is perfect. I think life can be a prayer when we try for Him. Formal prayer is beautiful, but informal prayer is constant. At least that's what I try to do. I know I fail miserably, but I have to reach for it. We're ok tonight. He knows what He's doing.

Morning is coming, and with it more answers. May our Lord God grant you peaceful sleep and His angels keep watch through the night.

JD

May 2, 2010

2010-05-02T00:31:00.003-07:00

I spoke with my mom Saturday afternoon and after asking how Garrett was doing, and the rest of the family, she mentioned how much she looks forward to reading these updates. It was a gentle reminder to make time and jot something down this weekend. Sometimes I forget how many folks use this forum to stay in "contact" with Garrett and his situation. It's been a great piece of therapy for me, to write and use this as a diary of sorts to later maybe be gleaned for a larger project someday. I need to remember that mom and many others use this as sometimes their only way to keep from wondering how our little warrior is handling the journey.

To be honest, I've spent the past 24 hours back with my family in tact and being quite selfish with my time. When Jessi and I arrived yesterday evening, Garrett met us at the door with tears in his eyes and held on to use for a long time. Then they went through a bunch of hand-made cards from Garrett's classmates. Friday was "Cowboy Up Day" in honor of Garrett at his school. All the kids and teachers dolled up in their best cowboy renditions just for him. Garrett and Jessi later spent 3 hours having fun with a whoopee cushion and "getting" everyone in the house, at least once.

It's tough dealing with the separation. Normally, these weekends in April and May would find me helping friends working calves. But this isn't a normal year. The brandings will just have to happen without me this year. There's no place I'd rather be than right here. Maybe Jessi and I can sneak off to one of them. She needs a special day, too, and there's nothing she loves more than helping work the baby calves.

It's now about 1:30 am, and I can't make myself go to sleep. Garrett has long ago fallen asleep next to me on our mattress on the floor in the basement here, but I just want to lay here and watch him. I smile every time "Sir kicks alot" stretches out and whacks me in the shins or hollers out in his sleep for someone to throw the ball harder. The little "annoyances" that once aggravated me when he just "had to" sleep with me, tonight bring me a tremendous sense of joy. Not long ago, this moment was uncertain.

Before he faded off, he asked me to check his vitals again. He's more attentive to his body now than ever and wants to know. His blood pressure is good, but his pulse rate has steadily increased a little in the past few days. Not enough to be overly concerned, but enough to raise my eyebrow. He was in the high 90's a week ago, and in the 120's tonight. I'm glad we have another check up on Monday. It could also be the excitement of having us all together again, seeing Levi last night (those two fighters really help each other stay strong) and/or a visit from one of his very best pards today. We also played catch for quite a while this afternoon. We were enjoying this new found freedom so much that we over did it a little. He got to feeling a little fatigued after, so tomorrow we'll take it easy. But that's what he needs to do. He needs to test his body a little at a time, listen to it and respond accordingly. We have to remind ourselves that this is a marathon, not a sprint. He can still throw the ball though! He stung my had a couple times pretty good pitching this afternoon. We took our break to watch the Kentucky Derby. Kathy picked the winner.

Garrett's doing really well overall. His face is puffy right now, but most likely from the steroid treatment he's on. He finishes it this weekend and should lose his new "baby cheeks" shortly. He just jokes about it and says he's starting to look like one of the chipmunks.

Kathy and I reflected tonight on our 10 years of marriage. How our "honeymoon" was interrupted by my fathers death, then we learned we were pregnant with Garrett and he was sick. Between he and I and Jessi, we've spent way too much time in hospitals in the last 10 years but that's just the way it is. It makes times like right now so much sweeter. His little terrier is asleep on the mattress next to him, his foot is on my leg...........and life is Good!

Tomorrow Jessi and I will sneak out and go visit my dad's grave early in the morning, go to church and relish the last part of our weekend together as a family. It seems like there's always a head wind driving back south. I guess the ol' pickup doesn't want to go back without them either.

I'll drop another note after Monday's check up. Kathy's anticipation is rising as we're now just a little over 3 weeks away from the biopsy. That's when we'll get a lot of answers to lingering questions. We just have to enjoy every minute of these times, one day at a time, and pray for the news we want so much.

In Him,

JD

April 29, 2010

2010-04-29T21:06:00.003-07:00

Today was another victory in the journey of our littel warrior cowboy. His check up today showed that he does not have any fluid on his lungs, his liver is not distended and the rash is gone! His heart functions continue to get stronger and we can start taking him on walks now. While he still has to listen to his body and make sure we don't over do it, a little light exercise has now been approved. He's pretty excited. I told him I'd bring the gloves up this weekend and if he's feeling up to it, we'll play a little catch.

There really isn't a down side because we already knew that this journey will take a while, but we had to re-adjust his anti-rejection meds again. It will continue to be a balancing game until his body is strong and hopefully has fully accepted the heart again as his imune system rebuilds. Right now he's on about 3x the amount he was on prior to the rejection episode.

Kathy told me that the doctors are truly inspired by Garrett's ability to recover so quickly. Some of the nurses who took care of him when he was critical have even come to the clinic to visit him because they just can't believe he's doing so well. It was just a hand full of days ago that they were concerned he may go into heart failure at any time. Thank God for great physicians and the healing power of prayer.

Garrett sounded so good on the phone tonight. He's missing Jessi and I really bad, along with all the animals, but is overall a very happy little boy right now. Jessi gave him a full run-down on all the horses, dogs and barn cats, including the litter of kittens she found the other day in the shed. They're already working on names. Anyone want a kitty?

I was thinking tonight about something he did a little over a week ago that I will never forget. It goes back to when he was born. When Garrett was just a few minutes old, he was taken from the delivery room immediately to a critical care unit and after 4 tries, they inserted an IV into his tiny hand. As he was crying in pain, I wiped that first tear from his cheek and placed it on my own. I've done that every time since then, through the literally hundreds of pokes, needles, IV's and even from fear as I would lay him on the operating table and kiss him as I've done 23 times since that day 10 years ago. A little over a week ago he was in so much pain and afraid, I had already performed our little ceremony as the only way I could symbolically help carry his tears. But only a few minutes later when the pain was at it's peak, he was losing the ability to move his extremities and thought he was becoming paralyzed. Garrett called me close and took a tear from his own cheek and with a shakey hand placed it on my cheek. His eyes were so full of anxiety and fear and putting his tear on daddy was his way of asking me to help take the pain away. God only knows that I would take his place if I could. I will never forget that painful but beautiful moment shared between a child and his daddy.

During my meditation today, I focused on the fact that Jesus has promised when we can completely give everything we have to him, all of the fear, pain, uncertainties, worries and problems of daily life, and to gladly bare these discomforts to honor Him, He will then reveal Himself completely to us and then we will have true peace and joy. That is the goal. That is where I want to be. Then, there will be no need to wipe our tears on anyone because there will be no more tears.

I hope your weekend will be as joyous as mine. I'm heading north and get to hold my wife and my boy!

JD

April 28, 2010

2010-04-28T20:57:00.002-07:00

The good news is that Garrett has another great day. He misses home terribly, but physically he is feeling better than he has in a while. God continues to touch him gently.

On the other hand, I just got done pontificating how you just have to stay in the fight and there isn't time to feel sorry for yourself. Remember that one? How about riding that bucking horse one jump at a time? Well today I spurred over his neck pretty bad. Unfortunately, I crashed in front of some folks I respect and who depend on me to be strong. The pain and frustration reached a boiling point and I failed to take the pot off the fire.

Before I go on too far, I spent the rest of the day in some type of prayer, asking Jesus to pick me back up and reaching out to some good men to help bring my petition to the Father. I received one response from an incredible man who snapped a knot in my butt and told me to drop it! He reminded me that it's ok to be human and to move on. He is right, and I will do my best to do just that. I can't protect my family if I'm swimming in quicksand.

Fear is a strange creature. It is nurtured by the enemy and fed by our inadequacies. I disguises itself to those who think they're immune to it. Apprehension can be a good thing. Fear with fatigue can be deadly. So I guess this is for those who think we don't fall apart. We do. I did, and I hate what happened. But I will take the advise of a man who has been there, literally, and give my attention and concerns back to my Lord God who alone can calm the storm.

I love my God and my family with everything that is me. My goal is to stay strong for them, and I can do that only if Christ is my strength and I let Him have complete control.

God bless,

JD

April 27, 2010

2010-04-27T20:04:00.004-07:00

Jessi and I spoke to Garrett a little while ago as he was getting ready for bed. I'd made it an entire day away from him and his mommy and only had to call them 6 times. I did great! Jessi and I even found a little time this evening to mess with a couple horses for and hour or so and enjoy a pretty spring evening. Like the man said, "the outside of a horse is good for the inside of man".

Garrett was in a great mood and said this is the first day in about a month when he didn't hurt someplace on his body. God is so good and Garrett is so happy! His days keep getting better and better. His mommy said he sit's around watching baseball and eating. The steroids make him hungry all the time, so he wants to graze constantly. She makes sure he's grazing on fruits and veggies so he won't swell up like a bloated carp! We can't let him do too much yet, because his heart isn't ready to be tested. For a busy little guy like Garrett, that's a tough order.

We hate to get too excited just yet and the doctors have drilled that into us also. They said as bad as Garrett's rejection is, it would not surprise them for him to back slide again and have to kind of start all over. They even kind of expect it. That sure wouldn't be fair, so let's pray that won't be the case. I think he's paid his dues.

Kathy said she heard from someone today who asked her how she "does it". We hear that alot, and it's in kindness when stated. But the reality is that you really have no choice. When your child is fighting for his or her life, no matter how many bumps, set backs, disappointments and scares, you can't just run and hide. Believe me, there had been times when I didn't feel like I could take another step and my own heart felt like it would burst, and times when the tears made puddles on the floor from anguish, terror and frustration. But if this fight took every dime we have, every day we have and even our own lives, we would never give up the fight. God has blessed us with enough "breaks" between fire fights that we can sort of re-group and come back strengthened for another assault. The real enemy at times is when you find yourself worrying about the future and the "what ifs". That's a dangerous pattern to follow. If we spent time worrying about the reality of pediatric transplant survival rates, we'd go crazy. Each day is special and we're blessed to have one more day, each day. Bucking horse riders like to say that you have to ride him "one jump at a time". This is true in life.

I've read many stories of prisoners of war who've endured years and years of physical and mental torture and stories of soldiers who found strength they never had before in the middle of the most horrific circumstances. I've been honored to meet some of these men and a resounding theme runs through all of them. They tried to make every day a victory. They all have faith, friendships and an unrelenting will to survive, to not fail their families and to win. So do we. You see, courage is not the absence of fear, but the God-given will and tenacity to fight a good fight, knowing that losing the battle would be worse than not fighting at all. Sitting around feeling sorry for yourself only aids the enemy.

Well, I'd better sign off for now. I have another issue with Garrett I need to work out. When I spoke to him, he was watching...WWE. He was watching wrestling when a Rockies game was on! I was appalled. He assured me that he'd watched the Rockies until they were up 11-0 and no longer needed his help. But still.......wrestling over baseball. What next?

Have a great day capturing all the good things, fighting for the important things and ignoring the little things. Save that energy for the big battles that surely will come.

Be blessed,

JD

April 26, 2010

2010-04-26T22:06:00.002-07:00

At Garrett's check up today the transplant team marveled at his ability to bounce back so strongly from such devastating sickness only a few days ago. His heart is getting better every day, there's no fluid in his lungs and for the first time in two weeks, his liver is no longer distended. What I thought was still some rash on his body, was in fact bruises. They told us that his rash was so severe the other day that it actually burst some capillaries under the skin and left little blotches where the rash had been. They look like little light colored leopard spots.

He's gained back the weight he'd lost and is getting more energy by the day. Last night when we went to bed he started a "tickle fight" with me. That little booger was relentless. It was great! When Jessi and I left today to come home for a few days, it was tough as always to leave Garrett and Kathy, but I wasn't as scared this time. I think keeping him from doing too much over the next week will be the most difficult task. He's starting to have nightmares again, but I kind of expected that. I'm really watching Jessi, too. She keeps things inside and two years ago got ulcers from worrying so much. Today she she complained about tummy pain again. I hope and pray it passes. Seeing Garrett getting better should help a bunch. She's seen an awful lot of scary stuff with her brother, plus two cousins who have cancer.

I got to thinking tonight about the past 10 years or so, and the incredible journey I've been blessed with because of Garrett's illness. I'd like to think that I would have been this in-tune to the every day beauty of my family had we not traveled this trail. I'd like to think that I would thirst this much for my Lord or tried this hard to be an honorable man, but I'll never know that.

What I do know is that every day is a victory and can't be wasted. I've been blessed with wonderful memories like closing my eyes and trying to memorise every smell, sound, touch, feel and emotion when Garrett was only 6 months old just in case I didn't have that chance again. Or the feeling of tremendous responsibility combined with fear, joy and un-matched love when Jessi would curl up on my lap, tuck her head under my chin and fall asleep. I crave the sound of Kathy's laugh and the softness of her gentle hands in mine. I've stayed awake for hours just to watch them sleeping peacefully and relish those moments when they aren't afraid of anything. I've been given the gift of being knocked down to my knees, because it gives me time to talk to God while I'm there. It's pretty awesome to have been given so much in my life. I've been given back both of my children when medical science indicated that shouldn't happen. I've witnessed them grow as children while they find miracles in nature and prefer animals to a t.v. I've seen new colors brought to my life because of them, just like so many other "daddys", but because my nerve endings have been peeled raw so many times, I also feel the little joys more easily. I don't deserve a single gift, but I'm so grateful for every blessing.

I learned today of another little 5 year old boy who has a sick heart and might need a similar treatment. It just drives it home that our story is not unique. There are so many kids and families out there who need prayers and support. I'm just incredibly thankful that God blessed my family with so many around us who care.

Our prayers tonight are for little Andrew, and for all of those who pray for us.

God bless,

JD

Sunday, April 25, 2010

2010-04-25T23:13:00.003-07:00

What a weekend! We were blessed with a couple great days. While the rash is still there and very noticeable, it's nothing compared to what it once was. His pain is very manageable now and he's been a very happy boy these past few days. Tonight as we curled up together, he asked me to check his heart "just to be on the safe side". What I saw blew me away. Garrett's resting heart rate was 97bpm! Just two weeks ago today, it was 151. It's working!!!

We had a few short visits from some great friends this weekend and they brought good thoughts and gifts from so many folks who are holding our little man up in prayer. We are truly so humbled by the outpouring of love and support. I didn't get permission to use names here, so I won't. But I can tell you that two incredible young men who Garrett has known his whole life designed some little bracelets, in Rockies colors, that say "Garrett Ross" on one side and "Cowboy Up" on the other. The two sides are separated by a heart and a cross. They are incredible and these two boys ventured out on their own to sell these for Garrett and spread the word. Jesus even told us that we need to follow the little ones like these for they will lead us to Heaven. Nobody can love like a child. Garrett and all of us are so beholden to them for their friendship. What a gift! Jessi, too, got a beautiful hand-made turquoise and silver native style necklace from some wonderful friends, just for being the best little sister ever.

Garrett also got about 2000 baseball cards (I've had to arm wrestle him for some of the old good ones...I lost) and a former Major League pitcher, who has a Major League heart, contacted us and said God put it on his heart to reach out to us. What a very kind and unassuming man. He sent Garrett a custom bat, a game jersey of his and some signed articles. One of these is a ball from pitching a perfect game! A little note said "it will be the perfect day when you can return this to me". He has raised the spirits of a little man whom he's never met. I'm grateful to everyone, beyond words.

There were t-shirts, and pennants and cards and coloring books........they all bring with them a gift that you cannot touch, but most certainly can feel. The healing power of love is stronger medicine than anything at TCH.

This afternoon Garrett and I watched the Colorado Rockies memorial service for Keli McGregor and were moved. We learned some lessons from his family and friends today as well. I was so proud of his daughter who bravely got up in front of hundreds of thousands who undoubtedly watched today as she spoke of this man's most important job ever....that of husband and father. When she spoke so proudly of "daddy", it reminded me again that no task I'll ever handle will mean more or leave more of a lasting legacy. I didn't know the man, but if his daughter is an example of who he was, he must have led a truly principled life and I would have been honored to meet him. He was my age...and he will be remembered most because of his role as "daddy". No greater title can ever be gained. Only this morning, I snuck out to visit the grave of my own "daddy" a short drive from here. I still seek his wisdom. I left a bracelet there for him.

Kathy and I even got away for about an hour this weekend while my sis-in-law watched the kids. It was the first time we've had "time alone" since this rodeo began. Kathy admitted to me that she thought we were losing Garrett this week. Her eyes told stories that most will never learn. No mother should ever have to endure what she has, yet she is strong and determined and I hope she never again has to wonder if she's tucked her baby boy into bed for the last time. She is amazing.

Tomorrow starts another week of tests and POSITIVE results. I feel it and believe it. The greatest athletes and warriors in the world will tell you that winning is 90% mental and 10% physical. We already know that Christ won the greatest battle for us. Now we'll take what little skill we have and continue this fight here with the grace He give us to stay positive, steady and "never quitting until God tells us to". Garrett said it best.

Have a great week. Walk in His footprints, they've already smoothed out the nastiest bumps in the trail. Those little rocks we step on might just be there on purpose to keep us from hitting something jagged.

JD

April 23, 2010

2010-04-23T11:23:00.007-07:00

There are few sounds in life that are quite as beautiful as that of a child laughing. Especially children who haven't had much to laugh about for a few days. Garrett and Jessi were sitting together in the other room just a while ago watching old Carol Burnett shows and having a ball. He's now napping peacefully. He's earned it. What a great day!

You all know that this leg of the journey started on Monday afternoon. Started with a little rash and by Tuesday at 3am, Kathy had Garrett in the bathtub trying to cool him down and relieve the discomfort. By noon he was intermittently inconsolable. By 6pm he looked like a burn victim. He got a little comfort overnight from the oral steroids, but by mid-day Wednesday the pain was setting in. By bedtime, tylenol wasn't touching it. By midnight he was crying in his sleep. By 4am he'd been crying for a couple of hours. By 6am we were in the hospital trying to get an IV started. Over the next 10 hours, Garrett cried. I've seen him in pain before, but I've never witnessed anything like this. Even the nurses were getting tears in their eyes. No one could help him. It would just take time. He was scared that he might be getting paralyzed because he could no longer move his neck by noon on Thursday. Even trying to gently rub his head would bring cries of agony. Every nerve ending was fired up and it hurt for him to even move his fingers. I couldn't hold his hand. From his toes to the top of his head, he hurt. Inside and out. Sometimes he would cry out for Jesus to take the pain away. It was tough to witness.

At one point during the fight, Garrett stopped crying outwardly but the tears continued to stream down his face and he got really mad. He had an extremely angry look come over him and through pursed lips and gritted teeth he told me "daddy, I'm not giving up until God tells me to". It took all the strength I had not to lose it right there. What a statement from a tough little guy who has fought and won, his entire life. This warrior is cowboy tough and then some!

Kathy and I felt so dang helpless the last few days. The doctors couldn't just give him any ol' narcotic pain killers because of the potential for negative effects on his heart and blood pressure. Until he was more stable, they had to run another course. The ran an IV and put steroids in, which are designed to fight the allergic reaction. Basically what happened was that the chemo type infusion he had to undergo to fight the rejection, kills the "T" cells. The little search and destroy guys in the white blood cells. There are some anti-bodies left that don't die from the infusion. These little guys have the same tenacity that Garrett does, and they decided to attack the ATG infusion. During the battle, the molecules lock together and get deposited in nerve endings, joints, bones, skin....you get the picture. Steroids counteract that, but it takes time. Because he was in for heart problems and his blood pressure had been already a little low because that's another side effect of the ATG, they couldn't afford to just load him up on narcotic pain killers. They said this severe a reaction is not common, but is not surprising either.

Knowing all of this didn't make Kathy and I much happier. I was being selfish for my boy and I wanted him to get relief, NOW! It was mid-day on Thursday and Garrett had been in agony of some kind since Monday night. I've never, ever seen him in that much pain for that long. I can't even describe his cry. It tore at my very being. Kathy, too, was shaking it hurt her so much. We left Jessi with my sister-in-law. She didn't need to see her big brother like this.

But relief did finally come. Garrett fell asleep in the hospital bed and slept for about two hours. When he woke up, he was feeling a little better. By 5pm he was feeling much better and by 7pm he could walk on his own. The doctor really did not want Garrett in the hospital. He knew that this was not effecting the heart function, it was just a really nasty side effect from the IV infusion. They left the IV in and sent us home with some strong pain killers now that we were "on top" of the problem. We'd been fighting from behind for a couple of days and it just took a while to get the upper hand. Before we left they admitted that they were concerned about meningitis for a while, because the symptoms mimic each other. Thank God it was not. On the way home he made a very prophetic announcement. He smiled a big smile and said "Jesus is so awesome!!" He was really glad to be out of that hospital.

Garrett had a pretty restless night, so to speak, calling out in his sleep and flopping around quite a bit. "Sir Kicks Alot" thumped me good through the night. But that's ok. It beat being in in the hospital. He doesn't get to sleep next to daddy in there. He woke up this morning with the rash again, but happy and not in a lot of pain (that I know of) We gave him the meds right away and within an hour, he was comfortable again.

It'll probably take up to 14 days for this reaction to run its course, but we're on top of the pain and rash now, so we have the upper hand. Everyone slept a lot better last night and I pulled the IV this morning. We're looking forward to a few days of calm and happy kids. It's hard to believe the change. Garrett looked and acted like a burn victim for nearly 3 days straight, and now he looks and acts just like a normal, happy kid. He hasn't even mentioned the past few days except to say he was so glad Fr. Paul stopped by to pray for him. He and Fr. Paul are buddies and the good Father's visit yesterday was timely and needed. It brought some peace to Garrett's situation, and I'm very grateful for him in our lives. He's truly a holy man of God.

The nurses yesterday were top-shelf, too. They tried everything they could to help Garrett and were very tender. They've known him for years and are very attached to his journey, too. We really count our blessings through the tough spots. We prayed yesterday for Jesus to use our suffering as an offering to help bring others close to him, and to bring comfort to a close friend and cousin who are both battling cancer. In pain, there can be joy when the lesson is not wasted on feeling sorry for yourself. Garrett didn't miss this, either. As we said our prayers last night, he volunteered a special intention for people who "really need Him (Jesus)", and then thanked God for taking such good care of our family.

There are so many of you who are supporting and praying for our little warrior. God bless you all and thanks again for caring. We can't assuage the pain on our own, but we can be in God's tool box to use as He needs to accomplish that mission. You are.

Have a safe weekend and stay the course. We will too.

JD

April 22, 2010

2010-04-22T07:49:00.002-07:00

Hold the phone. We're back in the hospital. Garrett's reprieve from pain was short lived. By 8pm he was pretty uncomfortable. By midnight he was miserable. By 5am, we were headed for the hospital. He hurts through his whole body. Even touching the hair on his arms hurts him.

Garrett has what is known as "serum sickness". The ATG infusion has many potential negative side-effects and it appears he's getting every one. The serum sickness is a hypersensitive reaction because of the infusion and can cause rash, swollen lymph nodes, joint and body pain, lowered blood pressure, enlarged spleen or even shock. So far, he's got nearly all of them.

Sorry to give you the wrong impression that he was better. We thought he was.

Because his veins were already burned from the initial infusion before the pic-line, the serum sickness is only magnifying the intensity of the inflammation and discomfort as they try to put in some IV medicine to help him. He had to take another IV needle, but we had no choice. But they are infusing extremely slow to minimize the pain.

When we know he's getting better, I'll post an update. Until then, I'm just going to stay at his side and pray for this to pass. He couldn't have had more than 6-8 hours sleep in the past 48 hours. They just gave him some Rx to calm him down and help this chronic pain. Historically, this can unfortunately last up to 14 days. My heart goes out to any child who's had to endure this misery for that long. There is nothing fair about this, that's for sure.

JD

April 21, 2010

2010-04-21T19:42:00.002-07:00

Just a short update tonight. Garrett is feeling better today. We were litterally up until 5am trying to get him comfortable through the night. He kept waking up in agony. I had to hold his arms down a couple of times to keep him from scratching himself. He woke up better this morning and wanted to play. We did get him to rest some today. I knew he'd just want to charge on if he woke up feeling better.

Tonight it got a little tougher toward evening, but the Rx kicked in and his rash is much, much better. He no longer looks like a burn victim. Now it's more like a bad case of chicken pox.

He gets jabbed in the morning for a blood test and check up. We'll know more by late morning, but I sure don't anticipate they will re-admit him at this point.

He showed me who he is, again, tonight. A heart transplant friend of his was admitted for a day for some issues of his own. Garrett has been very concerned, in the midst of his own substantial discomfort, and want to do something for his friend. We pray and hope for his speedy recovery, with our little warrior's prayers leading the way.

Remember to hit your knees tonight so you can land on your feet in the morning.

G'nite.

JD

April 20, 2010

2010-04-20T19:47:00.002-07:00

Well we've taken a couple steps forward and slipped back a step or two today. Garrett had a miserable day because of a severe reaction to the infusion drugs. Kathy called a couple of times today and both times I could hear Garrett crying in the background. Jessi and I packed up and came a runnin'. Kathy had been up with him since 3am. She'd given him three oatmeal baths, cooled him with wet wash cloths, rubbed caladryl lotion all over him, given him benadryl.....nothing worked. The hospital called in a prescription antihistamine, but it didn't seem to help. Kathy felt scared and alone with a boy who had cried nearly all day because he felt so bad. Garrett has put up with more pain and discomfort in his short life than most old men will in a lifetime. He never carries it very far. He only wants to feel better. As soon as he does, he's back to playing as hard as we'll let him. For him to cry off and on all day long, I knew something was up. I heard him in the background whimpering that he was scared and needed daddy. Say no more!

The hour and a half drive north came complete with four more calls from Garrett and his mommy. Now his hands and feet were starting to swell and the bumps on his body were getting worse. I paged the transplant team and was told it was an unfortunate, but sometimes anticipated side effect of the infusion. Knowing what it was didn't settle me down much. I wanted relief for that boy...NOW. They called in another script, this time for a steroid. Our only options were to try the oral type or run him to the hospital for an immediate IV to help stop the discomfort. Garrett has been harpooned, poked, prodded, stabbed, cut, jabbed, injected, needled and IV'd to the point they have trouble finding a good spot to start an IV now because of the scar tissue. Blown veins and backed up IV's in the past, requiring multiple attempts and holes, have left him pretty scared of another. This is the first time IV ever seen him want an IV....he was that uncomfortable.

In an effort to avoid the emergency room and the inherent germs found therein, we tried the oral. We also gave him more lasix to try and help his kidneys do their thing. The whole ordeal today wore him out to the point that he finally fell asleep a little while ago, so with any luck at all, he'll rest tonight and let the Rx do its thing. I'm not sure how to describe it, but I've never seen a rash like this on anyone. It's as if you rolled him up, head to toe, in poison ivy. If it is skin, it had a swollen, red nasty rash and bumps on it. Head to toe. He can't scratch, because he can't afford to open the skin due to the infection potential which his body can't fight.

I took his vitals a while ago. His bp is a little low, so I'll just take the night watch and rub his back while he sleeps. We're not that far away if we have to run him in tonight later. If he rests ok, we'll most likely run him in to clinic in the morning. God, I wish I could take it all away. Through the whole situation tonight, little Jessi was curled up quietly on the couch, watched us and said not a word. She's scared. Mommy's scared. Garrett's scared. So help me, if He'd let me, I'd gladly take it all myself just to give them a moment of peace. Tomorrow will be better. Sleep does wonders for the emotions.

I know this much - if Garrett wakes tomorrow and the Rx has worked, and he's no longer in pain from the rash, he'll act as if nothing happened today. He just doesn't waste time being upset today about what happened yesterday. Today has too many new adventures to hatch. Daggonit, but that kid is just tough as ten kinds of horseshoe nails!

Tomorrow will be better. It just will. Please don't let this story shake anyone. It's just the way it is right now. We know we had to trade poison for poison. They knew they had to make him sick in order to make him better. Sounds lousy, and it is, but that's just the way it is. It's not like we have other choices. It's fight, or curl up and suck your thumb. We're not about to curl up.

The kids at Garrett's school started a "Cowboy Up" week yesterday in honor of our little warrior. Jessi kinda scoffed that it's no different than "we" always dress anyway, but after I explained it I think she understands that most kids don't dress that way or understand what "Cowboy Up" really means. It's just their way of supporting Garrett AND her, and that's pretty keen.

I'm glad no one sees him on days like today. It's hard to take sometimes. We know there are more days like this ahead, but the prize at the end is too great not to wade on through. We're going to have some kind of celebration when Garrett gets to come home later this summer!

May the Peace, Joy and Love of our Lord be with you all this week. We feel all your prayers and they make days like today easier to whip. God bless you.

JD

April 19, 2010

2010-04-19T20:43:00.002-07:00

Got home this evening, Jessi and I, to get ready to start our week away from Garrett and mommy. I could feel the tension build in me yesterday as I knew I would have to drive away today. Garrett cried when we left. That was no fun. The longing he feels for "normalcy" is pretty strong right now. He misses his own bed, his friends, his animals......his "normal" life. Last night was tough on him as he anticipated the separation. He just wants to come home. He will. It will just take some time.

He had a nice call from his cousin Levi last night and that helped him quite a bit. He's been hurting for Levi, who is fighting stage 4 cancer right now. I talked with my brother-in-law tonight and the both of us can hardly believe that Kathy and her sister both have boys fighting for life right now. Levi's 21 and a real big brother image to Garrett. Garrett knows how sick Levi is also, and he hates not being able to see him. We pray fervently for Levi every day.

Over the weekend Garrett got a visit from some very kind folks with the Western Wishes Foundation. He was given a hawk feather for his hat (Garrett's always worn a feather in honor of Lane Frost) but this feather came with a story. Travis (who gave the feather) told Garrett the hawk and eagle feathers are very special to the native Indian tribes and stand for strength with each feather indicating God in our lives and each part of the feather all of the people and events, and how they are all connected through God. It was a very cool experience for him.

After a day off at the hospital yesterday, we were back there this morning. There were no surprises, which is good. We know that his liver, heart and kidneys all are not up to par, but have not gotten any worse. The fluid in his lungs has dissipated and Garrett is feeling better. He did have a reaction to the infusion medications today in the form of a rash. It looked like a bunch of chiggers had a hay day on the boy. He just has to take it easy for a while and will continue to get better with each day.

I spoke with Garrett on the phone tonight before he went to bed and he's missing me and Jessi pretty bad. But I gave him some chores to do while we're away. He needs to watch every baseball game, especially Rockies games. That won't be hard to do because he's such a Rockies fan. We had so much fun watching the no-hitter together the other night. What a piece of history to witness. Life shares a lot of similarities with baseball. The best pitcher in the world can't throw a no-hitter by himself. It takes dedication, preparation, commitment, pain and the support of many team mates to make it happen. As a very kind man and former big-league pitcher told me, "you can't worry about tomorrow's game. You have to take today, one pitch at a time". So true. We're in the early innings and Garrett's already thrown a strike.

Jessi finally fell asleep next to me. She is so tender hearted. I hate that she has to worry so much about her big brother. I would so gratefully take all of their pain and carry it if I could. I pray every day that I won't fail them or God. I told Jessi we'll run the horses in and try to get them legged up while we're here so she can start rodeoing this summer again. That brought her spirits up. She'd rather be horseback than anything else. The ponies are great therapy. She can keep Garrett's horse tuned up, too for when he can ride again.

This split family situation will take some getting used to, I can already see that. I already don't like it. I have so much respect and admiration for the troops who have to leave their families for a year at a time. The deserve all the prayers we can send them, and their families here at home.

Better sign off for now. We've said our prayers in hopes we'll land on our feet in the morning and bring glory to God through our journey. Garrett's biopsy surgery is now scheduled for later in May. That procedure will tell us a lot. Until then, it's a waiting game interrupted by bi-weekly hospital visits, blood tests and check-ups. Our tough little cowboy has yet to ask "why me". His is my teacher. I'm so grateful for the blessings and gifts I've been given and certainly don't deserve.

Be blessed this week. Every day is a victory, and victory awaits the warrior.

JD

One Week Into The Fight - April 18

2010-04-18T09:38:00.002-07:00

Garrett finished this round of treatment yesterday afternoon. He was really feeling tough but was a little better by nightfall. We celebrated our new found "freedom" from the hospital by having a slumber party with the four of us in the basement of my sis-in-law's place where we will build our fire for the next few months. We threw mattresses on the floor and everybody curled up together...sort of. We have to be careful because Garrett still has a pic-line in place. I'm hoping they take it out this week. The fear of infection is a little much. I stayed awake most of the night, it seems, going over and over in my mind how I missed the signs that he was getting this sick.

We woke up this morning and took our coffee out back, drinking in the beautiful spring day. Sure is a different morning than one week ago today. We've come far in such a short time, and our God in Heaven has calmed the waters.

I do want to caution everybody, though. The transplant staff reiterated yesterday again not to get too "excited" about our progress. This is still very early in the game and history has shown then that it's frequent for kids this sick to have severe setbacks. So we'll pick a steady pace, but have to remember who they're dealing with. This boy has beaten the odds so many times, and has more fight than anyone I know. They even talked about it yesterday, remembering Garrett as a baby. He always scared the heck out of them, but he refused to ever quit. That's why we're so positive about our chances. We know our boy!

We have a visit planned for today, from some kind folks with the Western Wishes Foundation. That organization has been so supportive of Garrett over the past few years. They survive on a shoestring, but manage to help "cowboy kids" all over the country who are sick. They are writing a chapter about Garrett's story in their 15th anniversary book.

I wish we could all go to church today, but can't afford to be around crowds of people. So for those of you who make it, please put in an extra word for us today. Thanks!

Thanks for all the prayers and support. We know how blessed we are, and we continue to pray for wisdom and grace to accept God's will.

JD

April 17, 2010

2010-04-17T11:13:00.002-07:00

We got quite a neat present today. I heard Garrett laughing this morning and it was the first time I'd heard that sound for over a week. God, it was so beautiful. I can't believe I've become so routine in my world that the subtle nuances that typically go unnoticed are now resounding with thunderous exclamation. I guess it's a good reminder for me not to take for granted the really important things, like a child's laugh or the amazement on their faces when they think they've discovered a new bug or new breed of barn cat.

We really appreciate that pleasantry today. Yesterday was a little tough on the cowboy and family. Fortunately the end of this session of infusions is in sight and he can start feeling better soon. I'd gone home for a night to check on the horses and dogs and get some things done at work but before the day was out, I'd heard from Jessi 5 times, Kathy 3 times and Garrett 3 times. They were not at all comfortable with daddy being gone, so I pulled the pin and headed back to Denver. There was so much warmth and feeling of relief to have us all together. I even brought Garrett's rat terrier "Stella" back with me. The kids needed a little of home with them.

The latest update is that Garrett has lost about 7 pounds, but his lungs are clearing up nicely. He is still a little puffy in his face and belly, but it will take a while for that to subside because his liver is so enlarged. On Monday we plan to have another echo done, but we don't expect to see any big changes. What we do know right now is that this infusion treatment completely kills off all the white blood cells so he has no ability to fight any infection right now. At the same time, because the white cells are gone, those nasty T cells that attacked the heart are not there to hurt it any further. As his immune system re-builds, the new platoon of T cells should be indoctrinated to the new anti-rejection medication and not perform mutiny like the last crew. For now, the doctors will remove the pic-line this week because the risks of infection due to the open wound are greater than having to put another one in if he gets sicker later on.

Hope everyone is having a blessed weekend. We are, because we're all together as a family, and that's good enough.

JD

Day 1 - Work Release

2010-04-15T08:50:00.010-07:00

Today marks a new chapter in our story. Last night we were paroled to a half-way house about twenty minutes from here (if all other drivers stay home...45 minutes in normal traffic). As much as we wanted to escape the hospital, that first few days out is a little spooky. No monitors, no nurses, no doctors, no IV's....it's good, but a little spooky. Although this isn't our first rodeo, the situation is different this time and it will just take a while to adjust.

Garrett started crying last night again and it took a few minutes to find out why. Turns out he was just happy to be out of the hospital. After talking with him for a few minutes, I learned that when he first found out how sick he was, he didn't think he'd be leaving....ever. Do you ever wonder how many kids up here might think that way? And yet us "big folks" still find time to complain about our work load, or an extra bill in the mail.

That's sure one of the things that has been driven home, again, as I walk around this hospital. No matter how scared I might get, no matter how sick Garrett might be, it only takes a turn here or there to realize how incredibly blessed we really are. For example, our next door neighbor in the Cardiac Unit was a little baby girl with a severe heart problem. Her mother is a just a teenager who was there only once, and her "dad" was a teen gang banger who came by twice. I saw no other family support. When she cried, or needed held, it was a nurse who responded. Through the night, there was no one talking or singing quietly to her, or gently touching her tiny hand...just to let her know she is loved.

Garrett has had his struggles, trials and bumpy trails. No one can question that. It's been tough on the family in so many ways, financially, emotionally, spiritually, relationship challenges, work challenges, logistical challenges, horses go un-ridden, home problems, animals.......the list goes on. But when I sit and really look at all we truly do have, the support system and the faith we're blessed with cannot be matched, I don't believe, anywhere. I'm more grateful that I can express, and entirely humbled. Not for Garrett's pain and fear, but for the love and support that blankets my family. And for the family I have who love me. It helps make a very difficult journey one that becomes a true learning experience. I've grown and matured (sort of....I'll never completely grow up) and I love my family more today that I did yesterday. I'll love them more tomorrow that I did today. I can, because I understand that's where I gain my strength. Even Jesus told us that "the greatest of these is love". We pray for them all and hope that little girl's world changes for her.

Garrett got a pretty cool treat yesterday afternoon. Charles Sampson, the 1982 World Champion Bull Rider, stopped by with his son LC to visit Garrett. Garrett and Charles have met on several other occasions, so it was pretty neat for him to remember Garrett and come by. We got some neat pictures with the three of them. LC is a miracle boy, too. He was severely injured as a child and suffers to this day, but has recovered remarkably. Their experiences with Children's Hospital back then has kept Charlie committed to this day. He spends a lot of time visiting kids here.

I don't want every update to be a downer, so unless it's really serious, I won't say much other than it's been "about the same". We've figured out the new medicine schedule, though I still need to print out color photos to help us keep all the pills straight, and we have a safe place to rest. We're going to focus on the positive! We all know this will be a long haul, so we're cinching up tight and setting our feet. The benefits of being away from the germs in the hospital outweigh the risks of being away from emergency staff. A few more days on this round of infusions and he gets a break for a while. Just stay close and check in with the "parole office" a few times a week. As long as good luck still follows and we stay the course, we won't be remanded back to solitary. House arrest seems pretty cool right now.

As my good friend Fr. Mike Fones wrote to me "We have already won. Jesus has won the victory for us". And he reminds us that our Father in Heaven did not keep Jesus from suffering, even though He did nothing to deserve it. Our discomforts can benefit those who don't know Christ's love by offering our suffering for them. Tomorrow in Paradise, there will be no more suffering!

God bless and stay safe. Remember, everyday is a victory so Hug your kids!

JD

Ps - here's a link to a Garrett video several folks have asked to see: http://www.youtube.com/watch?v=cV4GZCuE0TQ

April 13, 2010

2010-04-13T14:00:00.004-07:00

The doctors came by a little while ago and I asked for a "no bull-poo" assessment of our little situation here. It is likely to be a long haul for our little warrior. While his resting heart rate is getting better, it's really not a positive indicator of his heart's overall viability. The true litmus test won't be confirmed until they perform a biopsy in about 6 weeks. They need to give it that much time for his body to get better and to make sure the medicines are doing what they need. It's that same old balancing act. Too little anti-rejection medicine and he gets sick. Too much, and he gets sick. It's like trying to balance a turtle on a turkey feather. It can be done, but takes just the right touch.

I spent some really good, quiet time with Garrett last night. He's still pretty scared and was crying a little, saying "daddy, I don't want it to be my time yet. I just want to go home". Those are pretty hard words to hear, especially for a 10 year old boy who should only be worried about "how many barn kittens do I catch today, which baseball games will I start at pitcher and do I get to see a bunch of rodeos this summer".

http://www.youtube.com/watch?v=_l09AJ9lXSE&feature=related

The whole situation reminds me of a song a friend sent to me two years ago. I swear this song was written by someone who read my thoughts and silent prayers. If you close your eyes and listen to the words, it really strikes a chord in me that is exactly how I feel sometimes. Truth be known, this song probably does that for many untold numbers of parents. Kids just shouldn't be allowed to get sick...but they do. I can only hold strongly to the belief that God will make something amazing out of the discomfort, like maybe we'll grow in our love of God and gain strength through their pain to continue to fight for them, or maybe garner courage to do what is right for them regardless of our personal or political motivations, and maybe, just maybe, we'll find enough tenacity to fight for a world in which our grandchildren may have a peaceful place to live. We have to be learning something from this, otherwise it seems so pointless.

I'm looking over at Garrett right now, and he's sleeping soundly. A well deserved and needed nap. Not far from him, on a little bench in the room, his baby sister is keeping watch. They normally don't let kids her age into this part of the hospital, but we've been around here for so long they understand the incredible bond between these two. Jessi is the most unselfish person I know, and they realize that her love is as important for Garrett's recovery as any medication they can give to him. I'm grateful they made an exception.

More to follow. Just needed a forum to jot my thoughts for a few minutes.

Find the blessings in your day.

JD

Bump Along The Way

2010-04-12T18:22:00.003-07:00

Wow. Not sure how to explain this one, but I'll try. Almost exactly two years ago, Garrett was playing baseball and was not feeling well. We found out just two days later that his heart was dying. You know the outcome, and we're blessed.

Just over a week ago, Garrett was hunting turkeys in Kansas and feeling fine. On the way home, he began complaining of a headache and side ache. That night, he had a very upset stomach and was not able to go to school the next day. He started feeling better by week's end and on Saturday, he had a baseball scrimmage. He again wasn't feeling well but wanted to play. He turned a near double play and got a good hit. But I could tell he wasn't on his game and didn't have energy. That night I checked his vitals and his resting heart rate was 135 bpm. We called the transplant team and they sent us to Children's Hospital on Sunday morning.

Testing revealed that Garrett is in full rejection and the right side of his heart is not fully functional. By the time we got to the hospital, his resting heart rate was 145 bpm. By last night, it was over 150. A nurse told me in the ER that they were concerned about heart failure.

He was immediately admitted and started on a form of chemo therapy aimed at destroying his immune system and re-building it. It's always a balancing act, but his system did what it was designed to do and attacked what it saw as a foreign body...his heart. The result was the heart starting to fail and his heart, lungs and liver getting full of fluid.

Last night and today were pretty rough on him. He's been in a lot of discomfort and very scared. But this evening, he seems to be doing better. They performed a small surgical procedure today to put in a "pic" line, which is basically a shunt that goes directly into his heart. The chemo they were putting in his I.V. line burned his veins and wasn't going to last. The pic will be more permanent so he can stay on a regimen over the next few months most likely. He's on a course now that will put him on the pic meds for a week straight. The hope is that he will respond quickly to the turbo dose of chemo and be able to leave the hospital yet this week. He will be treated much like a leukemia patient, in that he'll have to live pretty reclusively again for most of the summer. They want to get him out of the hospital as quickly as possible to get away from the germs. We'll have to live close to the hospital and bring him in every day for four hours to get his infusion. I haven't told him yet that his baseball is over for the year...before the first game. Again.

While it's a pretty significant rejection, everyone is feeling positive about his chances to whip this problem. Garrett's tenacity has shown over the years and we'll just have to cinch up and take on this fight a day at a time. He already in just over 24 hours on the meds has shown improvement. Hard to believe because he was really, really sick. Still is, but is just starting to feel a little better.

As things change, I'll update frequently. We have our Lord leading the way and giving us the ability to fight. We're blessed to have that chance and every day is a victory.

JD

Best Trophy Ever

2010-04-10T22:29:00.005-07:00

Garrett and I recently spent a weekend of a lifetime together, hunting turkey in Kansas. It was a weekend to remember and I came home with my best trophy ever!

By way of a very good friend, Marv Clynke, Garrett and I were guests of the Southwick family at their ranch in north-central Kansas. The place is a wildlife mecca! Turkey, quail, pheasant, dove, deer, coyotes, owls, crows, snapping turtles, wood ducks, squirrels........more than we could count.

I say this was the weekend of a lifetime, and it is so. Garrett has hunted with daddy many times before. But this time was different. This time I was hunting with my friend and he was carrying his own tag, for the first time ever. Right in the middle of day two, we had worked our way down through a creek bottom so littered with deer tracks that it looked like someone was running cattle in there. As we clamored up to the top of the far bank, we found a good place to set up and ambush. Marv, who was guiding for us, was "bird dogging" about a half mile up from our location. We knew the birds were there, but it was so windy that they were tucked in pretty tight. So I set my back against a tree and pulled Garrett and his little shotgun (borrowed from Marv of course) up into my lap so we blended into the woods as literally just another "bump on a log". Within a few minutes, I got my trophy of a lifetime.

By the time Marv came to our location, I was holding my trophy as proudly as ever. Garrett had fallen asleep on daddy's lap. In the quiet time I had, just he and I before Marv arrived, I marveled at the goodness of God once again. Here in this beautiful place, surrounded by majesty of epic proportions, listening to a distant hen turkey calling, a crow scolding the hen and a woodpecker working on his own masterpiece, I held in my arms artwork unmatched. Through the "miles, trials, bumps, bruises and broken bones", we had reached a new pinnacle. Here, two hunting partners shared the beauty of God's hand, far from tubes, wires, needles, pagers, phones, doctors.....you get the idea. In the way only He could design, he gave me another gift I'll treasure all my days. He gave me the unconditional love of a little warrior cowboy, healthy and happy, in the only place he and I wanted to be right at that moment. And he let that little fighter relax enough to fall into a gentle sleep in daddy's arms. I've never brought home a better trophy. This one's mounted on the wall of my heart and will always hold a place of honor.

I'm continually astonished by the kindness of folks who reach out to us and do something special for my family. This hunt, this gift, will remain one of the most precious gifts I've ever received. It's hard to convey the sights, sounds, chill in the air, breeze........but believe me, all the stars aligned at that moment to impress a hallmark in my soul forever. Hearing his soft breaths, feeling his powerful heart, with him in my arms suddenly I could protect him again, if for only a few minutes. My love has never been stronger. Moments such as this one come along rarely, but thankfully, they do come along.

God bless you all. Take the time to find those moments with your little ones. They are fleeting at best, and to capture but one will give you the trophy of a lifetime.

JD

Organ Donor Awareness Week

2010-03-04T12:44:00.003-07:00

The El Paso County Commissioners read a resolution on Tuesday, Garrett's 2nd anniversary with Darren's heart, to claim this week as Organ Donor Awareness week. We were invited to the public venue and were so honored to represent thousands of families effected by the need for organ donation.

They also recognized Garrett, Darren's family and Megan's family for their selfless sacrifice to reach out and help our Garrett. It was a very emotional event and well recieved by local media. Here are a few links to stories carried.

Garrett was so humbled by all the attention. He made a big deal about a "prayer box" given to him by Darren's family. They "put" a prayer into the necklace before they gave it to him. The prayer is for Darren's heart to continue to beat strongly and never fail Garrett, giving him a full life of joy and love. Garrett won't ever take it off.

Please consider becoming an organ donor if you haven't already. The heart we love with is not the heart we live with. Our souls' are already spoken for by the Perfect Physician. The rest is only here while we are on earth. If there is anything that we can do to help another, we are called to do so. That is why we allow Garrett's story to be told. If any part of our journey can help inspire someone to reach out, to help another or to find comfort in their own tough times, then we're happy to share the story.

God bless you all, and remember that in each of us beats the heart of a warrior. Find it and you will find a peace in Him that cannot be matched by anything on earth.

JD

http://www.coloradoconnection.com/news/story.aspx?id=424211

http://www.newsfirst5.com/news/organ-donation-helps-colorado-boy-live-twice/##

http//www.gazette.com/articles/lesson-95020-gets-title-html

Heart Ball 2010 - Two Years of Victory

2010-03-01T14:33:00.002-07:00

Over the weekend, we had the honor of representing thousands of families at the American Heart Association Heart Ball in Denver. The 2010 event spotlighted the journey of our little warrior and the blessings received through organ donation and medical intervention.

The black-tie event is an annual gala to raise awareness and money to help pediatric cardiac disease research. A 7 minute video was played that chronicled Garrett's journey through 22 surgeries, 3 hearts and two heart transplants. The film crew interviewed the entire family individually last year, but we didn't get to really see it that night because we were on stage. We could tell by the audience reaction that it was powerful. Sunday night after we returned we had a private showing at the house. Wow......break out the tissues.

We were deeply honored to share this special evening at the Heart Ball with Garrett's donor family as our guests. To have Hal and Rebecca with us meant more than we could describe and put an exclamation point on the depth of emotion shared at the event. I was felt so privileged to introduce them to the doctor who performed Garrett's last transplant. As they shook hands, those of us watching were captivated knowing that two young boys, strangers, fought for their lives two years ago. Soon, the hands of that doctor would touch both boys as he took a life giving heart from one and placed it in another and immediately made the boys, one. The first and last hands to touch Darren as a baby and then before Garrett took a part of him to carry on. It was a powerful moment.

I'll post some photos soon, but suffice to say that it was a memorable event raising a lot of money for heart disease research. If one child, one family, one moment of research is helped or improved by knowing this story.....then we are humbled to share the journey.

God bless to all,

Good News

2010-02-26T07:19:00.002-07:00

Just wanted to let everyone know that Garrett's tests finally gave us some relief. The good news is that the pain does not seem to be related to his heart. The bad news is that he is still having discomfort, and it's likely that pain is related to inflammation inside the chest wall. Because of all the surgeries over the years and the metal bands holding his chest together, as his body grows it shifts these things around. No fun while he's going through it, but we're grateful that his heart is ok.

Other good news! Garrett's nightmares are subsiding. He's been seeing a counselor who specializes in these issues. Garrett loves her and she is really helping him relax and not be afraid to go to sleep. He's just way too young to carry that baggage around.

This weekend will be busy. We have been asked to be the ambassador family for the American Heart Association Heart Ball in Denver this year. They have created a movie about Garrett's life and will use it to raise funds to help research in this area. Then on Tuesday, the El Paso County Commissioners are dedicating a resolution, making the week of March 2nd "Donor Awareness Week". It's being done because of Garrett, and honors the two beautiful kids who lost their lives but whose families selflessly shared organs with Garrett and others to give them a second chance. It will be emotional for sure.

More soon. We keep you all in our prayers, always thankful for the support and love.

Praise God every day.....for every day is a victory!

JD

Quick Update

2010-02-09T15:04:00.002-07:00

Our little warrior started having chest pains yesterday at school. He's been complaining of bad head aches and stomach, plus some pain in his left arm. Don't need to remind everyone that those can be symptomatic of something more severe.

We immediately contacted physicians here and in Denver. As of now, he's had since, three blood draws, a battery of tests and visits to two doctors including Children's today. While we are seeing some things that raise our eyebrows, we're cautiously optimistic. We have to wait a few days for the complete results of all the blood tests, but so far everything seems to be within reasonable boundaries.

At very least, he will have to undergo a stress test next week. They may for ego that design and just head straight to a quick cath lab biopsy to be sure about possible rejection issues. We won't know until Thursday or Friday.

Overall, Garrett's been feeling good. He's been playing basketball and even helped take his team to playoffs. But he had to sit out part of the second game with a severe headache again. So for now, we'll just be grateful for our blessings and pray for healing. This is definitely not panic time, but it's never a bad time to keep praying that we don't get there again.

God bless to all,

JD

What a Game!

2010-01-02T23:15:00.005-07:00

The anticipation was worth the wait! Garrett and I arrived in Ft. Worth on Wednesday and were met at the plane by two great guys, Captains 'Mac' McGilvray (F-16 pilot) and Lloyd Childs. Both men are AFA alumni and were helping to host Garrett's dream weekend. Mac also played football at AFA in the late 1990's.

At the hotel, Garrett got to meet with Chris Thomas, Justin Moore and the rest of the Fighting Falcons football team. They gave him the red carpet treatment! He spent the better part of two days hanging out with the Air Force football team and their families. It was fantastic, but the best was yet to come.

Game Day! We met the team at 0830 in the hotel lobby and were led to the team bus. Garrett's seat was waiting. It was a tremendous experience and great teaching moment. The team remains entirely quiet on the bus, taking private time to focus on the battle yet to come.

At the stadium, Garrett got to go into the locker room with the team and hang for quite a while as they prepared. Chris and Justin both took time to visit with Garrett and give him more "gifts" , items such as wrist bands and a pair of receiver gloves that Justin made Garrett promise not to take off during the game. He didn't.

The game was amazing, Chris had 12 tackles and two interceptions. Garrett was beside himself. The day was a cold one, but Garrett refused to break his promise to Justin and would not put on his warm gloves. It may have been an omen, because the Fighting Falcons beat the top rated passer in the country, picking him off 6 times. We watched the game with Chris' family, Mac and Lloyd. Toward the end of the game, Mac reached out to his friend and 3 time Super Bowl champion Chad Hennings, another Air Force alumn. Chad visited with Garrett and let him wear a Super Bowl ring. It was quite an experience.

Following the game, Garrett was brought back into the locker room to share in the victory celebration. Chris gave Garrett a big hug and all of the coaches and players kept thanking him for coming to the game. The overall character of these tremendous men boggles the mind. They are truly the best and the brightest. The future of our Air Force is in great hands! They represent what is good and decent about our Country, and I'm so proud to know them and have my son look up to them. Their behavior the entire time was beyond reproach. He ended his trip with a visit to Mac's family home. They are great people. All of them.

Garrett came home with a signed football, other trinkets and memories to last a lifetime. More than that, however, Garrett received so many positive examples of how true humble warriors should behave. From the coaches and players to the families, everyone was top-shelf and treated Garrett with such care, dignity and love.

There will be more to follow, but I wanted to drop a quick note to share just a glimpse of what a fantastic experience this was for our little warrior with the heart of a champion. It was a good break, because as we returned, he had more blood tests done. There were concerns that his kidneys may have been in trouble. Indications now, though, are that all is ok. Praise Jesus!

One last quick note....Garrett played his PSP video game on the plane trip down. He played the Air Force Vs. Houston game. His score: Air Force 49. Houston, 14. The final score of the real game: Air Force over Houston, 47-20. Pretty darn close!

God Bless you all. Remember to put on your armor and always fight the good fight.

Merry Christmas

2009-12-26T10:44:00.012-07:00

Wow! What a Christmas it has been around the Ross tribe. The blessings keep pouring in for us.

When Garrett wrote his "Santa letter" about a month ago, the first thing on his list was a "Chris Thomas" jersey. Chris is a remarkable young man who plays Strong Safety on the Air Force Academy football team. He is one of the best safeties in the conference! Garrett has never met Chris, but is really a fan of the player. I can't think of a more positive roll model than an Air Force Cadet. Our military have thousands of great people who stand for the right things in life.

I made a simple phone call to a great friend, Mike Simler, looking for a replica jersey. Mike's father was an Air Force General, Air Force Academy A.D., and started the Commander In Chief's Trophy. Well, that started a firestorm when Mike pushed buttons. Now a simple search for a Christmas gift has developed into a gift he'll never forget. The Air Force Academy football team, Chris Thomas' family, the Simlers and others, are sponsoring Garrett to join the team at the Armed Forces Bowl in Ft. Worth, TX on New Year's Eve! He will stay at the team hotel, ride over to the game on the team bus and get to spend time with the team and their families. What an incredible gift! We are humbled beyond comprehension. This truly will be a gift he never will forget. How many kids ever get to see a bowl game, with their favorite team and college player?

The kids gave me the best gift I could have received this year. They knew funds were tight so they didn't ask to buy each other a gift. Instead, they each on their own, decided to give the other an item of theirs that is very special. To watch that interaction and see them hug each other Christmas morning without being influenced by mom or dad is truly a gift I will never receive. Those two are best of friends and the love they share makes me proud. They've been through a lot together, and their bond is extraordinary. They showed this, too, during a recent filming event to promote research for heart disease.

We have been asked to represent the American Heart Association as an "ambassador family" of sorts, for a large event and fundraiser in Denver next year. We've always said that if Garrett's story can help another child, we'll share it. They are producing a short film on Garrett's journey, and just hearing what the kids said about each other, family, friends and God.....again, warms the heart of a daddy.

Jessi has been amazing throughout all of the challenges and highlights. There's been so much done and said about Garrett, and Jessi has quietly stayed in the background being supportive, loving and unselfish. Even when Garrett was so sick she would go around to me, Garrett or mommy and make sure we were all ok. She's much more mature than her 8 years. Kathy and I have decided that an "anonymous" donor is going to sponsor her for a trip with one of us for being such a great sister through all of this. She is more eaten-up with rodeo than even her brother, so we're going to take her to an out of state rodeo for a few days and really make over her. Garrett is a very special boy, but he's just a boy and we want to balance how much attention he gets while Jessi sits back and watches in silence. There needs to be a reward for that kind of courage, too.

Well, it's winter again. The cold keeps us inside more than we like, but it gives me fewer excuses not to drop you all a note and let you know how the little warrior is doing. He's taken to basketball now and is doing well. He likes the game and his coach plays him a lot. He continues to have nightmares but we've finally gotten a few leads on someone who may be able to help him move past that.

As I sign off, I ask you all to pray for a family I know who lost their son to heart disease just a few days ago. While we were able to celebrate the magic of Christmas with our son, another family is planning a funeral for theirs. The gifts we have been given are not wasted because we will continue to use these gifts to glorify God and help find a way to cure this terrible disease.

Merry Christmas, Happy New Year, and may you all share in the blessings of the Christ Child, the warmth of His love, and the magic of the season seen through the eyes of a child who for a while, can forget about fear and pain. If we learn from them, we can too.

God Bless,

Checking In

2009-11-16T12:47:00.004-07:00

It has been quite a while since a post, so I thought I'd put out a short one quickly to let everyone know that Garrett is doing really well. He had a great summer playing baseball and once again, just being a kid. He still has nightmares from time to time, but slowly he will hopefully be able to deal with the "demons" that naturally come with such a traumatic experience. Overall, he's done remarkably well.

We had a little bit of a scare when Garrett was diagnosed with the H1N1 flu a while back. He apparently got it at school. He was a pretty sick little guy for a few days, but came out of it really well. Not being sure how his heart would handle the situation, Kathy and I were pretty spooked. We took turns sleeping with him for a while, and thus got it too. We all felt lousy for about a week, but the put the whole family on the Tamiflu and it helped.

Garrett's doing good in school this fall. We held him back a year because he missed so much school a year ago that he was constantly behind and frustrated. He and Jessi are now going to school right next door, which is great. They just walk across the pasture and they're there! He's playing basketball now and really enjoying that.

There's so much to tell, but all at once is too much. Garrett has a biopsy scheduled for the first of next year, which will be really tough. So we won't even tell him for a while, though he asks about it once in a while.

Hope everyone is well and thanks for all the prayers. They work!

God bless,

JD

March 2nd, 2009 One Year!

2009-03-02T20:30:00.002-07:00

Hello, Friends!

It’s been a while so today seemed like the perfect time to update Garrett’s blog. Exactly one year ago today, we received a blessing that words cannot describe. Thank you for hanging in there with us.

The past several months have raced by so quickly. In January, Garrett received a “Western Wishes” wish. They are the cowboy answer to “Make A Wish Foundation”. The whole family was treated to a weekend at the Denver Stock Show and Rodeo, where Garrett and Jessi hung out with many of the top cowboys in world. Garrett made new friends, and was given a special gift by the young man who won the Free Style Bull Fighting event…his championship buckle! It was an incredible weekend, to be sure. The fact that so many people are still reaching out to him, reminds us how truly blessed we are.

Yesterday, we had a small gathering of folks to celebrate our 1st year with our new boy. In perfect Ross family style, it could not go quietly. Just as we were packing the car to head to the event, I heard Garrett scream for “daddy”. The tone of his voice told me something was terribly wrong.

He had been in the yard playing ball with a friend (baseball tryouts were Saturday). He was throwing the ball in the air, and hitting it with a bat. Enter a yearling puppy named “Stella”. She is a 13 pound terrier, given to Jessi and Garrett as a gift by one of his nurses. Stella went for the ball just as Garrett swung. When I arrived, Stella was not breathing and in complete seizure. I gave her a quick rib rub, which caused her to start breathing. After quickly checking for, and finding no obvious broken bones, I carried her unresponsive body to a good friend’s waiting pick up. He had just pulled in. We made a mad dash to the 24 hour urgent vet care where after 24 hours and plenty of IV meds, she was able to come home with a whopper of a headache.

Last night, Kathy and I had to realize that though the day had been traumatic, (Garrett was sure he’d killed his dog…and nearly did) we realized that God gave us another blessing. One year ago, we had been praying for Him to save our boy. This year at the exact same time, we were praying He’d save a dog. We’ve come a LONG way!

Garrett told me later that he’d run off to the barn and knelt in a stall, asking Jesus to save his puppy. I guess Jesus really does love the prayers of a child. Today, you can’t hardly tell she’d been whacked.

We’ll write more soon, I promise, but I had to take this opportunity to let you all know that Garrett is doing great physically. We still awake every day victorious, and still finish every night on our knees thanking Him for one more day. Only now we do it with a dog who's worth about $30.00 a pound since yesterday.

God Bless you all.

JD

Perfect Score!

2008-11-18T18:53:00.006-07:00

November 18th marked Garrett's 22nd surgical procedure. Today we got perfect news. Biopsies are scored from 0-5, with 0 being perfect, and Garrett's tissue biopsies scored perfect! All of them!! All the old, bad cells that were there in the last test are gone. Praise God! Garrett's tough little body with God's grace, fought the bandits off again!

Garrett and Jessi both cried hard the night before. There has been barely any sleep and dang little rest for a few days. The anxiety was building exponentially each day. Both kids were scared for what "tomorrow" might bring, so I we just stayed up and watched rodeo each night the past few. That always makes life better.

Garrett had a really tough day yesterday, having 3 attempts at IV's blow up the veins. All the previous surgeries and IV's have scarred his little veins so much that it is hard to get one started now. They ended up giving him intra-muscular sleeping meds and then deadening the site for the cathetor (more needles). He woke up during the biopsy and asked the doctor if he was going to die. I hope and pray he does not remember that

I carried him in like I always do, and then Garrett was on the table for 4 hours. Laying him down is pretty tough, but it's the meeting with the doctors after that has us a little jumpy. Poor Kathy almost starts crying just at the thought. It was that meeting that kicked us in the guts last February. But this time the doctors came out and told us that both sides of the heart looked great, but that we would have to wait for the pathology results from the biopsy to know for sure. Today, there were tears of joy.

We were supposed to hear results by noon today, but by 3:30 we were still waiting and getting a little anxious. About an hour later, we got the news all of us have been praying for...Garrett's biopsies, all of them, scored a "0", being perfect. Both sides of the heart are healthy, strong and he is even growing an extra branch to one of his arteries. (something that normally does not happen)

Tomorrow we take Jessi in for an endoscopy to check on some stomach problems she's been having, but we expect to get good news again. Just another little bump, and then we get to go into the holidays with a clean slate.

We're worn out, but absolutely thankful and blessed tonight. I will pen more later, but wanted to share our tremendous news. Thank you all for your support and prayers. We are so grateful for the continued support and love for my family, and all the prayers we feel. Praise God with us! He gives us the armor to fight our battles, and we wrap ourselves in it every day.

God Bless you all!

JD

Garrett Now Knows

2008-10-24T00:19:00.002-07:00

Well, the news is out. At his appointment in Denver this week, Garrett was told that he will have to have another double biopsy in November. It was sooner than I wanted to tell him, but can't be helped now.

He is understandably scared and has had nightmares nearly every night since. During the day, he's a little more detached and askes a lot of questions such as "what if I die" and "How do we know this heart won't quit". All tough questions to find answers for, but we try.

I have told Garrett that God decides when we have completed our work for Him on earth and calls us Home to be with Him. For any of us, that is a question we all have and should always work to prepare ourselves for that day. We need to love and laugh and learn and make sure we take care of other people who have little, just like He taught us to do. If we do our part, I know Jesus will do His part.

Aside from the fears, he does not seem to be showing any outward signs of rejection, still. This is great news that we welcome gladly.

For now, we're trying to keep a positive spin on everything and focus on prayer and trying to live our lives for Christ each day. Our little Warrior is surrounded by a team who refuse to ever accept defeat, claims each day as a victory and ends each night on our knees so we can land on our feet in the morning.

Mommy and Daddy have our own set of fears, but I will not allow "can't", "won't" or "doubt" to enter into the Ross vocabulary. We strive for the heart of a champion....every single day. And each new day is a victorious blessing.

Stay warm, all. Summer's fixin' to quit us.

God Bless,

JD

A Brief Update

2008-10-16T21:59:00.002-07:00

I know I have been remiss of late. I guess we just got caught up in trying to put some "normalcy" back into our lives. Since Garrett's last biopsy results, we've seen no physical changes in our little warrior. He continues to be happy and playful, albeit a little too rambunctious at times (which is a very good thing).

The kids and I had a chance to head up into the hills for a short elk "hunt". It was their 1st official elk hunt with Daddy, and it will go down as one of my all time most memorable. Each had a cow (elk) call and they made every terrible squeaking sound they could muster. We didn't see any elk that day, but we had the time of our lives. We found a sun bathed saddle overlooking a draw, and both kids crawled up into my lap. I cannot remember when we had that much pure love and enjoyment together. It was if we were sitting in God's lap and the angels' wings were forcing a calming breeze down through the aspens. (see photo)

Since then, two wonderful community groups put on a ranch rodeo and quarter horse race to benefit the Family Fund For Garrett Ross. The overwhelming feelings of humility and appreciation were too much for even words to capture. Being proud people, we find it hard to let people help us. However, while we don't deserve any of the blessings we receive, we are forever changed and grateful to so many who came together over the love of a little boy and his family. Thanks, will never be enough.

Garrett is enjoying school now that his immune system is up and running pretty well. He still does not know about the big biopsy surgery in November. We want to wait until the right time to tell him. There is no sense in getting him stirred up right now. He fights nightmares and sleep, his sister Jessi is having some emotional fights of her own over the ordeal, and Kathy still cannot really talk about the "what ifs" and the future. As we deal with the emotional tribulations and the uncertainty of the future, we hit our knees each night thanking God for another day and pray that tomorrow will find us greeting the sunshine with a smile and will to fight one more time. God is so gracious and loving, and we know there are no fights we cannot win with Him guiding us.

More to come soon.

May God light your path to cool water.

JD

Biopsy Results

2008-08-14T08:44:00.009-07:00

Sometimes it's very difficult to send updates. This is one of those times. We needed a few days to digest what we heard and try to figure a way to let you all know. The pathology results of Garrett's biopsy were not what we had hoped. Garrett's heart does have an area infiltrated by lymphocytes, a group of little search and destroy blood cells that try to kill foreign bodies within our own.

The game plan right now is to let his otherwise healthy body try to fight this rejection, and to closely watch him. If he shows any signs of fatigue, etc, we will have to take a much more aggressive approach. The doctor feels that the chemo type medications can be counterproductive because they are so hard on other parts of the body. He wants to wait a while. Either way, he has to have a very extensive biopsy surgery in just a couple of months, again. He does not know, and I do not want the kids to know right now. He has had too many nights of worrying if his new heart will last. I want him to think he can climb the highest mountain and jump the tallest building. He is a warrior and needs to keep a warrior's mind set.

For now, I ask that you keep the prayers coming. We have not been in a fight yet we cannot win. By the Grace of God, we will win this one, too.

God bless you,

August 11, 2008

2008-08-11T13:25:00.005-07:00

Today was surgery #21. It never get’s any easier, just more familiar.

We spent the weekend in the mountains drowning worms to get Garrett’s mind off of the impending date with the surgeon. God brought us some much needed rain while we were there, but it didn’t dampen our spirits, only the ground. Garrett and Jessi made quite a discovery up there. He brought me back a few “cool looking rocks”. They were actually flint chips, which are created when the Indians were flint knapping tools and arrow heads. I had him take me to where he found them and we did a little digging. Our archaeological adventure turned up quite a few flint chips, a few small arrow heads and a broken flint knife. The kids got quite a kick out of digging for these when they understood that their ancestors (Ute Indian Tribe) may have camped along the river near where we found these.

The weekend was a good routine breaker because Garrett had his date with the surgeon this morning for another biopsy. It was needed to ensure that everything is still going as it should be. He was scared, but cowboy’d up just like the little warrior he is. I carried him to the operating table, same as I have some 20 other times. And just as I have the other times, I wiped the 1st tear off of his cheek and rubbed it on my own. I can’t take his pain and fear from him, but at least I can help carry his tears.

The doctor came out a short while ago and told us that visually, everything looked good. They got several good “bites” from inside his heart. Afterward, Jessi made the most incredible comment. She said the doctor "didn't look sad this time”. She remembered the look on his face when he came out in February to tell us Garrett was dying. She is an amazing little girl.

Tomorrow we should have the results of the biopsy. If all goes well, we should get to take him home tonight, because they only have to go in through the groin area instead of opening him clear up. He’ll have to stay relatively calm for a few days, but God willing, will be up and aggravating his sister within a day or two.

As I sit here next to him while he sleeps in the recovery room, I can’t help but think of how fortunate I am and how I appreciate all of the continued prayers and intentions. We have so much to be grateful for this year, even though the journey is far from complete. The love and friendship of so many continue to humble me daily, and I will never tire thanking our Lord Jesus for the blessings I truly don’t deserve.

Until next time, may He shine upon your path, keep your horses gentle and keep your tanks full.

God bless,

JD

August 1, 2008

2008-08-01T10:10:00.003-07:00

Summer is quickly growing to a close, and Garrett has stayed busy. With the exception of a few scary bumps a couple weeks ago, he has been doing great! We were fortunate enough to spend the weekend with Darren's family in Wyoming, and to see Garrett interacting with Darren's siblings is very emotional.

Garrett's been riding horses, buckin' barrels, roping the dummy, shooting the bow, playing catch, chasin' kitties and dogs and pestering his sister and mom. No two days are the same, and each day is a new adventure. He hates to sleep, won't ever admit that he's tired and leaves toys and clothes scattered all over the house and yard. Pretty much a normal little boy!

August 11th will be a test for him. He has another biopsy surgery ordered, and is already starting to get scared. Surgery #21 should not hold any surprises, but please keep the prayers coming. We didn't expect any in February, either.

With all the blessings we've had, we expect Garrett to be able to attend school this fall and be able to play around other kids again, with some minor adjustments. God is good and He shines every day in the life of this child and our family.

God Bless,

JD

Happy 4th of July

2008-07-05T02:04:00.003-07:00

We have had a very blessed 4th. A special treat was Darren's mom and two of his sisters came in from out of state to spend the weekend with us. They are such incredible people, and we will obviously be eternally grateful that they heard God direct them to donate Darren's heart to Garrett. With what I have jokingly referred to as a diesel powered engine running inside of my littlest Cowboy's chest, he has more energy than we could have imagined at this point. His check ups continue to be positive and he is able to enjoy his summer the way little boys should.

We've been playing catch, roping the dummy, riding horses and are planning a fishing trip. Life is so wonderful for us right now. It's easy to put aside the unknowing and fears that constantly try to break our concentration and spirit. We're just doing our level best to be as "normal" as possible and appreciate every day as a new victory.

This weekend we're taking care of a friend's place, and among other things such as feeding their horses and goats, they have a sick calf. Garrett jumps right in there and helps daddy get the job done. Jessi holds the medicine, I rope the calf by the head and one leg and Garrett walks up behind him and ropes his hind feet. He's so proud of himself and he just beams when I make over what a great loop he threw and how I couldn't do it without him. You can't cut me with a diamond!

I hope you are all enjoying your families right now as much as I am enjoying mine. Each day is just a little more special than the one before, and the little things that go out of whack, just don't seem important anymore.

For those interested, the local paper here ran another story on children with congenital heart disease. There is a photo of Garrett and a nice spin to the story about the need for organ donors.
http://www.newfalconherald.com/DisplayArticle.php?ArticleID=4400

Some wonderful friends have also started putting together a benefit rodeo/family dance. You can read about it on their website: http://www.heart4garrettross.com/

God Bless you all and Stay Safe!

In Him,

JD

Things Are Great

2008-06-23T18:49:00.003-07:00

Well, I have been bad by not posting for a while. We have been so enjoying our new found "freedom" at home, that I haven't been inside much. Here is the short story of our last month.

We've had plenty of challenges, but overall they are minor. Garrett is doing great! His health is holding up and with a few small changes to his medicine, he's been getting A's from his check-ups. We had a little scare when he got an upper respiratory thing, but it turned out to be allergies and no hospitalization was needed. We continue to guard that carefully, as he's months from having a good immune system.

Kathy and I have been very protective of the kids, physically and emotionally. I have tried to prevent any major emotional trauma to them, as they have had enough to last a while. Just after we got home, one of the kids' dogs got kicked by a horse and broke his leg. Then a few days later, one of the other dogs got poisoned. They both required stays at the vet, and one surgery, but both are recovering well. Then we had a pasture fire that could easily have burned down the buildings, but the wind changed suddenly and pulled the fire in another direction. We lost a few acres, but dodged another bullet. Last weekend I thought our luck had finally run out. Garrett's been doing so well and everyone is healing inside so nicely, and then I got a call at work. Kathy had run the horses in and Garrett's mare had developed a huge tumor inside of her left nostril. I sent a vet over and he called me with bad news. The tumor is a rare one, but a fatal one. We had no choice but to put her down.

The news brought tears to my eyes. I asked him to have until Saturday so I could prepare the kids and let them say goodbye. I knew this would crush their spirit. They had been through so much and could not wait to get home to their animals and had already almost lost two. Garrett had cried only days earlier, wanting to ride his horse. He was getting to the point we were going to let him, as she is a gentle old soul who is great with the kids. He'd lost a good horse a year ago Christmas, then Jessi lost her horse last fall. They didn't need another hit right now. Saturday morning came and as Garrett and I went out to feed and I prepared to tell him the news, he excitedly said "daddy, she's better!". The tumor had fallen out of her head and was laying on the ground. It was the size of a summer sausage and weighed over a pound. The vet came and said it was a "one in a billion" chance. In all his years as a vet, he had never seen it happen. This truly was another gift from God!

With all we have seen this year, we continue to be blessed every step we take. I am absolutely the luckiest man. I have been given so many extra chances with my children, and they continue to bring joy to all they meet.

We continue to bring Garrett up to the hospital every week for a full goin'-over, but so far, so good.

Thanks for all the continued prayers and good thoughts. We serve a fantastic, loving God!

May He smile on you all as much as he has us.

JD

May 24, 2008 - Nicholas and His Miracles

2008-05-24T19:49:00.004-07:00

This entry is dedicated to little Nicholas Greenwood who passed peacefully into the arms of our Loving God recently. I learned tonight that Nicholas , through the complete unselfish and loving decision of his family to share Nicholas' life with others, was able to give new life to three other children. Though Nicholas is physically gone from this life and is resting in the arms of Jesus, three other families have received the gift of new life through organ donation.

Please pray for Nicholas, his incredible family and their selfless love for others, and the children and families who now have a new beginning.

Like Darren, Nicholas continues to live on and on through the miracle of shared life. These boys are forever in our hearts. So too, are their families. In their time of terror and pain, they thought not of themselves, but of others who also prayed for healing. May God in His infinite wisdom and love, comfort them and heal their broken hearts.

JD

May 23, 2008

2008-05-23T14:21:00.007-07:00

They last few days have been full of every emotion in the spectrum. Garrett got a visit from a good friend (Doug) who is a helicopter pilot with the Pennsylvania State Police. Doug rode his motorcycle 30 hours to hand deliver a big check for Garrett's medical fund. We were completely dumbfounded. This is the second major fund raising event people have created to help with bills and expenses relating to Garrett's lifelong continuing medical treatment. While hard to accept, we are so humbled and appreciative of the goodness of so many.

On an extremely tragic and sad note, little Nicholas died suddenly last night. Nick is the little boy whose story struck such a chord in us just a few days ago. We have met with his family a few times. His dad and I prayed together over Nick only yesterday. Little Nick was such a beautiful child and he leaves behind a family with broken hearts. There are no rhymes or reasons for why some folks get more chances than others. When notified of Nick's passing today, they told me that getting to know Garrett for a few short days inspired them to make a decision to donate Nicholas' organs. All too familiar tears came as we all cried for the little boy Garrett never got to know, but had prayed for and delivered gifts to.

I ask anyone reading this post to please pray for Nick's family, and to pray for those children who will receive a second chance at life because of Nicholas and his family's unselfishness.

In Christ,

JD

May 21, 2008

2008-05-21T20:01:00.003-07:00

Hi Folks,

Things are going really good. The blood tests and check up the other day showed that our little Warrior has gained another pound and everything else looks great. Being home has helped so very much already. Everyone is happier and Garrett is eating and sleeping much better. Not one nightmare since coming home!

Garrett and I are in Denver tonight for a check up in the morning, so we're having a "boys night out". A McFlurry and SportsCenter... It doesn't get much better than that! Tomorrow we'll stop in to see a little boy we learned about a few days ago. We met his folks on Monday. Nicholas is a 6 year old boy in a comma with a traumatic brain injury. He is very, very sick and needs so many prayers. So do his folks and siblings. Please pray for them. Garrett wanted to give Nick a stuffed horse and baseball, so we stopped in. His dad is a fireman and I feel a natural connection to him. We bonded immediately. It's hard for emergency service workers to be victims and then suddenly you're thrust into the role. Nick's dad is amazing, though, and has a great deal of inner strength. Tomorrow they are to learn about recent tests that will tell a lot about their future. Again, please keep them in your prayers.

Garrett got to see his class today. After days of begging, I finally gave in. I ran interference like a pub bouncer if any kid got within 6 feet of him. Actually, it was really nice for him to see his classmates before they finished for the year, and no-one touched him. He sat in a chair about 10 feet from his class for about 20 minutes and told his story and answered questions. I was very proud of how he handled it. He even showed off his scars.

Each and every day I learn something more from these kids who have been through so much. It's hard to express in this forum, but suffice to say I am the luckiest and proudest daddy around. I realize the road ahead is still very long, but the future looks so bright right now. Everyone is healthy and we intend to stay that way.

God Bless you all,

JD

WE'RE HOME !!!!!!!!

2008-05-17T11:58:00.004-07:00

By the Grace of God and special favors from the doctors, we were allowed to come home this week! After Garrett's biopsy, they surprised us by letting us come home a few days ago. The doctors have been very understanding, realizing the stress on the family being away from home. They are so pleased with Garrett's progress, that they decided to let us sleep under our own roof. Since the roads are good now, we can commute to the hospital from here. They also said they are doing this because we have been through it before and they don't have to "train" us about what to look for or do if Garrett has sudden problems. The rules of the game stay the same, in that we have to be back to Denver frequently for blood work and a complete check ups. In those cases, we will just stay in a hotel overnight to be at the hospital 1st thing the next morning and spend the day there. Most likely it will be 2-3 times a week.

I cannot express the overwhelming feelings we have all experienced in the past few days. Listening to the kids laugh and yelp as they play with their new barn kittens and just run around the yard. I can tellyou that beautiful sound has brought moisture to this old cowboy's eyes. It has though, been a little challenging to convince Garrett that just because he's home, doesn't mean he can do everything and go anywhere. He still cannot be around crowds of people or anyone with even a cold. But just being able to sleep in our own home is amazing!

The Little Warrior is charging forward with his family in tow. We never imagined they would let us come home so early, but it is yet another testimony to the power of prayer and the answer being "YES". Momma's a little nervous, but I know this move is a very good sign. Now we'll just try to remember what it was like to be here. Lotsa cobwebs, dirty pens and dead grass to clean up. Never had so much fun cleaning up the place. As spring brings new life to our part of the planet, we get to have a new beginning with it. And it is that much sweeter because of all of your support and love. Thank you!

'Ain't God great?!

May 7, 2008

2008-05-07T13:03:00.007-07:00

Well, great news today! The hospital called and Garrett's pathology from the biopsy was read as an R-1, which is "fantastic". There were only a few little cells of concern, but not enough to treat for now. He will have another biopsy in 4-6 months. Overall, the results of the surgery were as much as we could hope for. God is good!!!!!!!! Garrett's body is accepting his new heart really well. We'll adjust his medication a little to bring his levels up to par and continue to come in a few times a week for blood work and a thorough diagnostic, but now it looks as though we can start to heal emotionally and seek some 'normal' living, with obvious restrictions. At least there will be no immediate anticipation of any more surgery for a while.

We had a little bit of an anxious last few days, hoping and praying that everything would turn out well, and our prayers were answered with a resounding "Yes". Garrett didn't even have nightmares last night, which were expected from some of the medication he had to be on yesterday. He did see little orange butterflies when he woke from surgery and it was kind of funny as he drowsily tried to reach up and catch one in the recovery room. But at least he didn't have any giant gnomes or grizzly bears chasing him! :-)

These past few days have been filled with emotional highs and lows. Garrett was so scared for the surgery, and we tried to stay positive but also deeply prayed for no rejection. We also learned of the sudden passing of a very good friend. He epitomized the term "Cowboy Gentleman". Please keep Frank's family in your prayers. I know he is in paradise today.

Life is so very fragile, and we are blessed to have this little life charging forward with no signs of slowing down. The future looks very bright.

More good news soon. God bless you all and thank you again for all the continued support.

JD

May 6, 2008

2008-05-06T19:13:00.003-07:00

Praise be to God and thanks for the prayers! Garrett came through his biopsy surgery very well today. It was a tough start as they poked 4 holes trying to start an IV with no luck. Then they gave him a shot in the fanny to put him out, and ended up putting an IV in his leg.

Doctors came out after a few hours and said everything went well and all looks good. We should have information on the pathology from the biopsy tomorrow sometime. We have to go back in the morning for a blood draw, but other than that it will be a day of rest.

Last thing Garrett said he remembers before they put him out today was "you (daddy) and me saying it was time to cowboy up". Gotta love it.

God Bless,

JD

April 28, 2008

2008-04-28T12:53:00.005-07:00

April 28, 2008

Welcome to springtime in Colorado. We had planned a nice little diversion for a few hours on Saturday. Darren’s mother, stepfather and a few siblings who wanted to meet the boy who has their brother’s heart were scheduled to come down from Cheyenne to visit. They called early and said it was snowing too badly to chance the roads. I looked outside. It was sunny and calm. Are you kidding me? About 30 minutes later I went outside to get something out of the car. The nice, sunny day had changed and a cold north wind blew in. A very cold wind. Y’know, the kind that will suddenly freeze the boogers in your nose? It was brutal for even a few minutes. Within the next few hours, we had more wind, some sun, then windblown snow, then sun. Crazy.

Sunday was a different story, and Darren’s family came down on a beautiful Bluebird day. The visit was emotional and spiritually uplifting. I wish there were a way for me to assuage the anguish they undoubtedly will always feel. I know seeing how healthy Garrett is becoming, helps a lot. They are really wonderful and very outdoor oriented. We’re hoping to plan a fishing or hunting trip together this year. We finished off the day with a special visit from the family of our Godson. One of the most wonderful Christian families ever, and a true source of strength for us. This came just when we needed it.

For some reason we have all been experiencing tough dreams lately. Mine replay the sleepless nights of prayerful vigil next to Garrett’s hospital bed. More than once during that time I cried out in a screaming voice that only God and I heard, “Please Jesus, help me! Help me protect my family! Help me to fight this untouchable bastard, death, that keeps clawing at my son and at the hearts of his mother and me!” But I know that to the day, my God has not forsaken me. He keeps putting me in just the right place, at just the right moment in time to hear His voice. The same way some unmistakable, yet unheard voice, told me to push and push until we found out why Garrett was hurting back in February. We have so much to be grateful for, yet these dang thoughts still enter our minds when we’re most vulnerable.

We have spent much of the past few days going over in our minds where we are at, where we’ve come and what we have yet to encounter. The family does a good job of trying to putting up with my mindset, and that is every new challenge is a mission and tactical planning is a must. It’s the only way I can keep from losing it sometimes. We are a team. We survive as a team and take each bump as a team. We take each day as a new victory and try not to think too far down the road, although admittedly, I am the biggest transgressor in that arena. Back in my tactical days, I would always tell my guys to “put on your game face” as we readied for a new mission. This is what we'll have to do soon, as they have moved Garrett’s biopsy surgery up a few weeks to May 6. He doesn't know yet. Nor have we told him that his grandpa was just diagnosed with prostate cancer last week. He’s enjoying his days right now as best he can. The isolation from ‘normal’ he feels weighs heavy enough without adding more to him. Both kids are a little crankier lately. I think the walls are just closing in a little. This 14x16 room gets smaller all the time, but an influx of new families forces us to be more secluded to prevent possible germs being picked up and making Garrett sick. A couple of families who came in were carrying the flu without knowing it.

Don’t forget that your prayers send an energy that we can feel. They are sustaining and help us to fight loneliness. Please hold some prayers for little K.J. who is very sick again, and for a baby in the room next to us who is fighting terminal cancer. These kids and their families are in every room in this place, and they all need our prayers.

Until next time, stay safe and God bless you.

JD

April 25, 2008

2008-04-25T00:18:00.004-07:00

Howdy Folks-

Garrett's had a rough night tonight. I think he over did it a little the past few days. He's been feeling really good, and I just let him be a "normal boy", as much as possible. He ran and played, walked the zoo and the airplane museum. Both educational, open and few people. All the right stuff to let us attend. Big outings for any kid, to be sure. But these were really huge for Garrett. By tonight, he was played out. He complained about chest discomfort and his heart rate was a little high, so I decided to just have him settle down the rest of the evening. We played a few more obligatory Xbox baseball games, which he won of course, and called it a night while we watched a documentary story about a WWII B-17, the Memphis Belle. But by 1130pm, he was fussing and fighting in his sleep. He's had a history of this but it has been better since getting his new heart. I'm hoping and praying it is not a sign of something bad. That's always one of the hard parts. When can we separate 'normal' growing pains from something that is dangerous? We almost waited too long last time. It's times like these that make me truly understand and appreciate why they have us stay close to the hospital for several months.

His heart rate is great now and after waking a neighbor to get our heating pad back, he was sleeping quietly after about an hour of watching hunting videos with dad. That's sort of a tradition. Over the years when he's had a bad night, and there were many of them, he and I would watch old National Finals Rodeo videos or hunting videos to take his mind off of his pain. If I had a baseball game being played, that would have been in the lead for choice of the evening.

His clinic check up was good today. No big changes to speak of. Another change in medicine to keep trying to balance the cyclosporin levels until next time. That's why we celebrated with a trip to the air museum at Lowry. He really spun his head in that place. It was also very cool to show him planes and equipment that his grandpy had flown in and used, and his uncle, and another couple of friends, and to see a room dedicated to the Air Force Academy where his two cousins are going to school.

Y'know, I visited with a friend the other day and was asked what my plans were going to be for the future with work and play. I don't have that answer right now. Before this all happened, I was in the process of trying to start a very long series of administrative loop holes to get my place properly zoned to sell. I had been planning on another big summer trip with the Pikes Peak Range Riders, one that I always look forward to taking in, and planned on taking care of some external family issues, etc., etc. What I do know for sure, is that I have to put my son and his health, and the whole family's emotional health at the forefront of my decision making process. Safe to say there will be no Range Ride this year, unfortunately. The property issue....well, I just need to keep praying on it. Money's tight, but somehow God will provide. Work....well, work will just have to work out when it does. The Office has been good about giving me the freedom to be with my family during this time. For some reason, it seems more difficult this time around. Not hard from the standpoint of the wait, for we received a heart so soon. But more because there are four of us now who all understand to some degree what the implications can be, living in one room, in a home filled with other families who are dealing with their own tragedies. There are challenges, to be sure. But there are also many, many blessings. I told my friend that right now, I just want to see my little cowboy graduate from high school. It's hard to focus on much more than that.

Garrett cried the other day, wanting to go back to church again. For obvious reasons, we have not been attending as the services are typically very packed. We try to make sure we read scripture every day, pray several times a day as a family and try to walk the walk and talk of God all through the day. But those don't give us everything we need. I will find something soon so we all can get fed in His house like we're supposed to.

I realize how how weak and fruitless any words of mine can be at times, when I try to convey my sincere appreciation to God for the many blessings he has given me. I know of no other father who has been able to spend this much time with his family over the years. Granted, it has come at a price, but I am lucky just the same. I'm reminded of a statement made by Thomas Paine many, many years ago. He was speaking of America's freedoms, but it can also apply to our situation and many people like us. He said "Those who expect to reap the blessings of freedom must, like men, undergo the fatigue of supporting it". Just one more day, every day, IS worth all the fatigue it takes to get there.

Have a blessed weekend.

JD

Welcome To Garrett's Blog Site

2008-04-22T01:11:00.000-07:00

It has been requested of me several times to start a blog about Garrett and his journey. After some recent prompting by my sister-in-law, I have decided to give it a whirl.

The purpose in doing this is to share his story and allow updates to be more readily accessed by those who wish to follow our progress. I hope you will find the following pages and contents to be warm, informative and helpful. We have added some photos for you to look at depicting Garrett's life over the past few years.

These are but a snapshot of the life of one little boy, who by his champion warrior spirit, has forever changed many lives and brought glory to God.

In Him,

JD

April 21, 2008

2008-04-22T00:53:00.000-07:00

Hi Everyone!

Garrett is getting stronger and finally beat 'em at the clinic. He gained a pound!! His blood work is all over the map right now, but it's to be expected because they are changing and weaning him off of many of the medications he had to be on initially. There are no cause for concerns, and he actually looks better than he has yet!

We spent some time with my brother and his wife on Saturday. It was like being released, almost. The sunshine and fellowship did more for our spirits than we can express. Great Stuff!

A down side to the week was learning that very special friends of ours lost a friend in a tragic work accident. Our hearts and prayers are with them, and I ask you to think of them when you pray, as well. Another friend just learned of a co-worker diagnosed with lung cancer. She is also in need of God's intervention.

We don't have to look around much to find someone with a tougher life than ours. We struggle at times with yearning for home and "normal", but praise God every day that we continue to win this fight. There are many around us who are losing.

Our little friend "KJ" has been through another round of chemo last week. Garrett and Jessi were concerned to tears because it makes her so very sick. The kids have really been great for each other. The interaction with other kids with issues has been quite a learning experience.

Physically, Garrett is doing really well. Emotionally, he is still struggling at times. It's all understandable, though. He just wants to be, as he puts it, "a normal boy" again. I still haven't found the answers to all of his questions. I pray every day for grace and strength to help Garrett, Jessi and Kathy work through their fears.

As I was putting this 'blog' site together, I prayed fervently that God will continue to help me find the words to bring Garrett's story to you in a positive light. It is positive, even with the bumps and boggs, because we are living out God's perfect plan....or at least trying to. I hope He looks down favorably as we try to humble ourselves to His gifts and yours, to live with a sense of purpose and discipline and drive on toward the ultimate prize.

Until next time, my prayer for you all is that you can feel how your intentions comfort us when we need it most.

God Bless you all,

JD

April 15, 2008

2008-04-22T00:48:00.000-07:00

April 15, 2008

Hi everyone,

What a week we’ve had! Garrett got a very special treat on Saturday that he won’t ever forget. His transplant team decided to let us bring him home for just a few hours so he could attend the opening day ceremonies for the High Plains Little League. If you recall, Garrett had just completed tryouts only days before we found out he was so sick and needed a new heart. They also decided to put off his biopsy for several weeks to let him get mentally ready for it. He needed that.

To honor Garrett, the little league invited him to throw out the 1st ball to start the season. All of the teams were there, about 20 different baseball teams. They all lined the edge of the outfield while the league president gave a very nice introduction about Garrett and his journey. Then Garrett was brought out and he threw out the 1st ball of the year. His team then rallied around him at the mound and cheered for him. It was a very emotional and wonderful ceremony. I took some pictures, but honestly had trouble seeing through the lens. They also surprised all of us by displaying Garrett’s initials on every jersey this year, and all the players and coaches signed a bat for Garrett. He was told by the league president to pull out the bat when he was lonely and missing home, so he could see how many folks were pulling for him.

The day was really cold. We almost didn't try it, but knew we could keep him warm and sequestered in the car most of the time, and he really needed a morale boost. Garrett was only able to stay out for a very short while and really couldn’t interact with the other kids much, but he was very humbled by the whole event. After that, we took him home for a short visit to see his animals. Within a few minutes, he went back to his bedroom and cried. It hit him pretty hard, because he knew he had to go back up near the hospital and couldn’t stay home. I think it gave him a little glimpse though, that we will be home for good at some point.

We were brought back to reality on Monday when we learned another 2x transplant boy had pneumonia. We’re glad we have been so lucky and we pray for the other little one, but it reminds us loudly why we have to take it slow and be ultra-cautious about germs and infections. I tried to talk them (the hospital staff) into letting us go home in May. It was worth a try, but it’s a no-go. His weight is still a little off, and some of his blood work needs tweaking, but he feels good most of the time. He’s healing well with only a little scab left on his big scar.

There have been so many people doing wonderful things to help us. Sometimes it hard to believe we’ve come this far so soon. We will never be able to thank everyone for all they do. Events like the one described above do so much for Garrett’s morale. He needs his emotional strength to help his little body keep healing, and all of the prayers and kindness help more than I can ever explain. The emotional toll takes a lot from each of us, but your love and friendship give us renewed strength. We continue to pray for you all, just as your prayers are holding us up. God’s goodness cannot be fully described.

In Him,

JD

"Evil Prospers When Good Folks Do Nothing"