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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
Sunday, November 21, 2010
Tuesday, October 26, 2010
October 26, 2010 - The Battle Continues, But the Armor is Strong
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
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
Sunday, October 10, 2010
A Week of Happiness, Animals and Magic!
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
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
Thursday, September 30, 2010
September 30, 2010
Well, I promised an update as soon as we got word about the last test we were waiting for. The results of the PRA came in late this afternoon. Unfortunately, we got the wind knocked out of us a little today as the results weren’t what we had hoped and prayed for, but we’ve got to keep in mind the tremendous victory we had yesterday.
The up-side is that Garrett’s PRA is a little lower (89) than in June (96). The target range is around 25. So what does this all mean. Well, basically Garrett is out of immediate danger of general lymphocyte cell rejection and his body is not trying to kill his heart anymore. The problem with a high PRA is that is presents a different, increased potential risk of additional rejection than other cell-mediated rejection. A high PRA can cause immediate rejection of a new transplanted heart, in spite of powerful anti-rejection medications available right now. But since we’re already in to our 2nd year with this heart, I feel like we’re ahead of the game.
We’re staying positive and know that God has the Perfect Plan for Garrett. Because we’ve completely beaten the lymphocyte rejection now, we’re on top of the fight. What we have to do now is set our game plan to fight the PRA and get it considerably lower. This means he’ll most likely have to undergo more IVIG, Cellcept increase, prograf infusion and plasmapheresis again. In talking with the doctors today, we all feel that the family needs a little vacation to relax and we’ll set our battle plan when we return. I’m hopeful this doesn’t mean another relocation to Denver, but we’ll do whatever we have to do.
I don’t want anyone to be disheartened by this news. We are winning this battle! We knew this would be a long fight and we have to stay strong and continue to take the fight to the enemy! We need everyone to stay positive and continue to pray for complete healing. We’re not out of this. Not by a long shot.
We’ve already increased his daily medications and cellcept levels. Hopefully that will help prepare his body so if/when we do more treatment, it will be shorter than normal. It’s not uncommon for kids to have to undergo 6 plasmapheresis sessions (oil changes) in a two week period when their waiting for a transplant. We’ve only done two. We’re blessed.
Kathy and I have decided it’s best not to mention this to the kids right now. Garrett is on such a high by having a zero number from his cell biopsy, and feeling good about yourself is a great healer. It's been kind of a roller coaster to say the least and they need a break. When the time comes, we’ll handle it as we need to.
I just wanted to post this and let so many who are wondering know that this week was a victory in spite of the overall results. Remember, we didn’t backslide at all. The heart is about the same, the cell rejection is gone and the PRA is down, if even a little bit. Any victory is still a victory.
God has control. He gave us a huge win yesterday and we’re going to show anyone who wants to see, just how powerful His mighty love can be. Tonight as I give this all to Jesus, I just look forward to a few days of my kids being free from nightmares, fears and unknowns. They’ve earned it. I love my family so much. I wish I could make the rest go away, but that job belongs to the Perfect Physician. For now, I will keep trying to increase my own faith and remember what Jesus taught us "If you have faith as small as a mustard seed, you can say to this mulberry tree, 'Be uprooted and planted in the sea,' and it will obey you."
JD
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
Wednesday, September 29, 2010
VICTORY - September 29, 2010
"Finally, be strong in the Lord and in his mighty power. Put on the full armor of God so that you can take your stand against the devil's scheme". God has told us this and we have tried hard to follow His direction.
Our loving God has responded to our pleas and given us a gift so incredible! Garrett's biopsy results, the pathology report from the tissue samples, came back a ZERO! Zero is the perfect number! That means that the rejection from Garrett's body fighting his heart is gone, gone, gone! In June, Garrett's numbers were a high 3, out of 4 total.
I cannot explain the elation we feel tonight. The family is already sleeping peacefully for the first time in many, many nights. Everyone is wiped out. We could not have imagined that the report would be this good. Kathy and I were already trying to figure out if we should even tell Garrett if the report came back with high numbers again. He's been so very scared. Jessi, too, even stayed home sick from school today because she was so nervous. But God blessed us with an incredible gift.
The bible tells us that "He will not grow tired or weary, and His understanding no one can fathom. He gives strength to the weary and increases the power of the weak. Even youths grow tired and weary, and young men stumble and fall; but those who hope in the LORD will renew their strength. They will soar on wings like eagles; they will run and not grow weary, they will walk and not be faint" . We have renewed strength tonight, when we most need it.
I can tell you that tonight, we are soaring! We realize that this journey is not over. There are roads yet to travel and we still have to wait for the PRA (Panel Reactive Antibody) test to come back. Those are the little devils that mean the heart was also fighting the body and caused Garrett to have plasmapheresis and a number of chemo-type infusions. But with the heart function no worse and the initial biopsy report perfect, we're expecting really good news!
Our God is an Awesome God, even without the good news. But folks, tonight we are resting more peacefully than we have in months. It looks as though now we can just look forward to Garrett's heart just continuing to heal and get stronger.
I will post more when we get the PRA results, but wanted all to know that we received great news tonight. Everyone was in tears as we heard. As I held him in bed tonight, Garrett prayed and thanked Jesus for His love and healing. He prayed and said "daddy, every night I wonder if it's supposed to be my time". "Now I think I'm supposed to be here a while". Pretty fantastic words from a pretty fantastic boy.
To all of you who truly deserved a personal phone call tonight, I apologize. I was selfish and enjoyed my time with the family, soaking in the best news we've had in months.
God bless you all, and thank you for the prayers which He heard and answered.
Tonight, we continue to wrap ourselves in His armor. We're ready for battle. Here's to victory again tomorrow!
JD
"
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
"
Tuesday, September 28, 2010
Biopsy - Sept. 28, 2010
Garrett had is surgery this morning for the long anticipated biopsy. It’s not something we’ve wanted, but certainly something we need. We need answers. After months of complicated bumps along the way, he’s overall been feeling so much better so that’s good news.
The doctors just came out and told us that Garrett’s heart isn’t any worse, so we're claiming victory. We were so desperately hoping they’d tell us it was perfect, but the pressures are about the same as they were last time. We just have to wait for the pathology results which will come back tomorrow and hope they're better.
I can’t lie and say I’m not just a little disappointed, but have to remember that this is going to be a long haul. We had hoped and prayed that his heart would show significant improvement, but we have to count our blessings and just be glad that it doesn’t show it getting worse. Basically the pressures of the chambers are still high. The doc told us his heart is a little “stiff”, but as sick as he was this spring, it’ll just take time. Looks like it’ll take at least that year to get all better.
Garrett was pretty upset this morning, but his great buddy Gavin was there holding his hand and helping him stay strong. Gavin is such a blessing to Garrett. But he was very scared, as can be understood. He just wants the doctors to come back and tell us that he’s all well again. In a rare moment of feeling a little down, he cried quietly and asked me “daddy, why can’t I be normal”. Another one of those questions I don’t have answers for. All I could tell him is that our Lord needs him to carry this pain to be a light for others. I truly believe this. I carried Garrett onto the operating table for the 26th time in his beautiful life. I held him and loved him until he fell asleep, as he quietly called out to his cousin Levi and invoked the name of Jesus. Over and over he kept repeating "I love the Lord".
I will be praying so hard tonight, though, that the biopsy of the tissue will show the rejection cells gone. I don’t know what else to say. The journey will continue, so we’ll lean on Jesus and remember one of Garrett’s favorite passages: “I can do all things through Him who gives me strength."
More to follow tomorrow. Be in His peace until then and remember our little cowboy warrior in your prayers, please.
JD
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
Wednesday, September 15, 2010
September 15, 2010
Garrett’s Journey continues as the days tick by and we get closer to the biopsy surgery. The anxiety intensifies and questions still remain. He’s had an elevated heart rate lately and been complaining more and more of bad headaches and stomach discomfort. It’s hard to know if it’s related to just the stress or maybe something else, laying hidden and waiting to pounce. It's spooky!
I peaked at his homework the other night and he was working on a project where he had to write about his worst nightmare. He wrote (these are his words and spelling) “going to have a cath (biopsy) than everyone and everything goes rong.” It’s understandable why he’s scared, but I just want his fears to go away. Jessi and Kathy, too. They've carried a lot this year.
Kathy and I continue to try and keep their spirits up but we have our own moments, too. Kathy wants to go back to work to help our financial situation, but she can’t because of Garrett’s issues. We’ve had to bring him home from school too often and it’s hard to know when we’ll be “out of the woods”. She keeps her mind busy tending her flowers, making our house a home and working out when she can. The fear of the unknown her constant companion.
In order to maintain sufficient focus on the Journey and not deviate on too many side trips around “personal” experiences that really don’t have much to do with the presiding issues, I find myself with a conundrum of sorts. How do I use this forum to effectively transmit the story and yet formalize it to a personal level for each reader? It’s important, I believe, to strike a humble and delicate but practical balance between “reasonable and necessary” and “too much information” when relating some of the more sensitive matters without sounding like we’re feeling sorry for ourselves. So I like to fill in the gaps with some of the more pleasant and heartwarming anecdotes. Every day is shadowed by fear and apprehension, but overtaken frequently by the joys and gentleness that only God’s love can give.
Recently my kids have done a few things that pulled at my heart strings. Garrett was honored with the opportunity to throw out the first pitch, at the last game of the year for the sky sox. This was a big deal and not an occasion that lends itself to repetition. As is tradition, the catcher gave Garrett the ball as a memento. Knowing how crazy this boy is about his baseball, I knew this would be a souvenir he would relish for years to come. Yet Garrett had other plans. As he left the ball field to join us in the stands, he gave the ball to his baby sister! I have never been more proud of him for his display of love and unselfish actions. Then last weekend he was the guest of honor for a Cadet for a Day weekend at the Air Force Academy. He received a set of jump wings to pin on his custom flight suit and was told that it is tradition to wear them for a full 24 hours straight. At the end of the 24 hours, you hand them off to someone you love and want to be kept safe from harm. When the 24 hour period was up, Garrett gave his wings, again, to his baby sister.
As parents we always try to teach our children to respect and emulate examples set by many of our fine law enforcement officers, fire fighters, emergency care workers, soldiers, airmen and sailors, and to comprehend why it’s so important to live a life of service to others first. When I see them do things like this for each other, or someone else, it gives me so much satisfaction to know that somehow, they’re getting the message. So much has been done for Garrett, and all of us, that it wouldn’t surprise some to see him act “spoiled”. With God’s grace, he hasn’t. And Jessi.....it's all for someone else. Always.
So since this was originally intended to be a diary of sorts to capture moments before they drift from my thoughts, I’ll continue to jot some notes about daily life as we know it, because it’s all about the “Journey”, which includes the precious times that reveal how truly blessed we are.
With His strength and trying to truly live the words "Thy will be done",
JD
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
Wednesday, September 8, 2010
September 8, 2010
Howdy everyone. I've been on a sort of sabbatical from writing for a while. Partially from laziness and partially from selfishness. I've been trying to soak in everything that has happened over the whirlwind year we've had. So many folks have blessed us with their kindness and graciousness that we'll be all winter just trying to catch up on thank you cards. That's a good problem to have, though.
Garrett has had a very busy and fun last month or so, with much more excitement to come. On August 24th, he was the guest of honor at a Rockies game and was able to spend some time on the field with the players during batting practice. He was given a bat and it was signed by 9 players while he visited with them. Jessi, too, got a cap and a ball from Jeff Francis. Very cool day! He also got to go to a Bronco's game with his "Auntie Barb", which was a thrill for him. Then on Monday, Garrett received the honor of throwing out the first pitch at the last game of the year for the Sky Sox.
A big event coming up will be a trip to Orlando, FL to Disney World. It will happen after his biopsy surgery, so will be a very welcomed and exciting time to be sure. The kids are beside themselves with anticipation. The trip is compliments of the Make A Wish foundation. We will be able to stay at a site specifically for families of kids with terminal or life-threatening illnesses. I still can't believe it's going to happen. We've always dreamed of taking the kids there, but knew that financially we could not come close if we had to do it on our own.
As this adventure of ours has found legs of its own and traveled around, we've had tremendous opportunities to share Garrett's Journey with some very inspirational folks. Most recently, we've been contacted to share Garrett's story in writing and pictures for an event later this year at the Air Force Academy. The event is planned to share stories of folks who have dealt with challenges and kept on fighting. Then most recently, Kathy and I were guests at a special invite-only event to kick off the AFA football season. The room was filled with war heroes, athletes, business champions and boosters. The list of names would blow you away! We were asked to share our story that evening and were honored to do so. Any opportunity to share the many blessings we've received is truly appreciated.
We've stayed busy, trying not to think about the upcoming biopsy surgery, but it's now just around the corner and we can't help but wonder. Garrett has especially been anxious and has shown the out-of-character lows so rarely seen in him. He's been having some severe nightmares and is really scared that the biopsy will not come back favorable. My heart breaks for he and Jessi, as they carry fears that little kids shouldn't have to carry. We try to console and inspire them to think positive. Garrett's been feeling pretty good overall, but we did have to take him back to the hospital the other day because he thought his heart was failing. It wasn't, but he doesn't know when he feels a pinch or pain in his chest if it's a bad thing. With the mercy of God, the biopsy will prove that we've not just knocked this demon down, but we've knocked it down and out!
I did talk to the doctors, who admit that they truly don't know until the results come back. They're "cautiously optimistic", but can only say that they know for sure that Garrett has improved a lot. He's still not back to where we need him to be, but he's doing better since he got sick in August. But we really don't know if the bad cells are still lingering and going to re-appear. If that happens, it's back to the hospital for a few months to start over with a "more aggressive" approach. I can only liken it to pouring weed killer on crabgrass. The weed on the surface dies, and the grass gets greener. But unless you kill the root, it will eventually come back stronger and kill the grass. If that happens, you have to either find a stronger weed killer that also might harm the grass, or you have to transplant the grass.
So for now, again, we pray for continued resilience and determination. With the loss of Garrett's cousin, his other cousin in stage IV cancer, our cowboy gets a little down sometimes. Jessi, too, cried to me the other day, out of the blue. She said "daddy, I don't want God to let us lose Garrett or Levi, too". I just have to remind them that our God is so loving, so wise and so perfect, we just have to trust in His plan, not ours. Whatever happens, we will win because Jesus already fought the toughest battle for us. Just today we watched the news of so many folks who've lost their homes in the fires up north. We're blessed!
This weekend, Garrett gets to be a "Cadet for a Weekend" at the Air Force Academy. He gets to hang out with the team and see all kinds of very cool things. These tremendous events do so much to help the kids think of the fun things and not focus on what comes ahead. I'm so grateful for folks willing to help them like this.
As a daddy and a husband, I tend to doubt my abilities to protect my family. I'll keep working hard every day to do what I believe is right in God's eyes and do my best to give the rest to Him. We'll never live in a vacuum or stick our lower lip out for long. Life is too precious and everyone has challenges.
I hope this note finds all of our cherished friends safe and happy. You all bless us every day with your thoughts and prayers.
Be blessed, always.
JD
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
Sunday, August 29, 2010
August 29, 2010
Howdy folks! Garrett continues to feel better after a two week bout with a bug from school. His system just isn't real strong yet, but we're excited that he is beating it. He's been starting to get nervous about his biopsy next month, so we keep busy doing fun things. A highlight recently was a special trip to a Rockies' ball game, courtesy of Make A Wish. Garrett was given a bat and got to spend time on the field during batting practice. He met several of the players, who signed his bat. Todd Helton even gave Garrett the batting gloves he'd just worn. To cap off the day, he got to visit with Jason Giambi, who Dinger really likes. It's a toss up between Helton, Tulo and Giambi for his favorite player. All three were gentlemen and kind to our little cowboy.
The nightmares are coming back again, but I'm sure it's because of the surgery next month. I had to wake him last night a couple of times because he was literally fighting so hard he was going to fall of the edge of the bed. We handled it like we always have, staying up together and watching baseball and rodeo. He's tired today, but in good spirits. We went to church this morning and he was so excited to be there. He truly understands the need to have Christ in our lives every day, to serve rather than be served, and to give back to God on Sunday for that special hour or so where we are in His house and worshiping the most loving of fathers.
Later today he gets a really big surprise. His "auntie" Barb is going to take him to the Bronco/Steeler game. Garrett doesn't know. He thinks he's just getting a ride to Denver to meet with his mom for the Rx apt. in the morning.
Garrett's blood pressure and heart rate continue to stay consistent, which is good. At least it's not getting worse. The biopsy will tell the story and let us know if we've beaten this illness once and for all, or if it's just knocked down and will eventually re-attack. Of course, that's always a possibility, but we hope and pray that for a while at least, the bad lymphocytes, T and B cells, are destroyed and his immune system is re-building as a more gracious host.
We didn't do too well with our hunt for a new horse yet. We've had a few nice offers, but are holding out until we find just the right one for him. After missing so much the past few years, he really needs a stick that will let him build his confidence back up.
Please keep Garrett's cousin Levi in your prayers when you remember the little cowboy. Levi and Garrett are so close, and Levi's brother Noah was taken Home a few months ago very suddenly. It's been pretty tough on the family this year and Levi is in stage IV cancer. We keep praying that both boys will beat their illnesses and let us go into the holidays as complete a family was possible.
I hope this update finds you all blessed and enjoying the last days of summer as God starts to change the colors and prepare us for Christmas. They will be more to follow, but I wanted to let everyone know that it's "business as usual". We're not out of the woods, but we can see timberline.
God bless and remember to smile. Your prayers have helped us stay strong and we continue to fight.
JD
Wednesday, August 18, 2010
August 18, 2010
It seems like a lifetime ago when Garrett was having chest pains early this year, and it was only in February. February of this year he was having chest and arm pains. They conducted a number of tests including a stress test and could not determine anything. Since then, as we all know, Garrett got very, very sick and we almost lost him in April. Since then, barring a few set backs, he's come back strong. We're still running the race and praying daily for the energy and steadfast commitment to stay the course and not deviate. Admittedly it gets a little tiring sometimes, just keeping the pace, but we're so blessed to be back home again.
Garrett's check ups keep showing positive signs that his heart function is very good, considering. He was able to try school but we found his immune system is just not that strong, yet. He got sick the first week and now is home fighting a full-blown sinus infection. His white cell count is up and his vital signs have changed just enough to show that he is fighting some stuff. He'll be home this week with another check up tomorrow. Hopefully he'll be able to knock this out quickly. Sinus issues can cause problems in the heart for these kids.
Having to stay home had its up side, too, though. His cousin Levi, who is in stage IV cancer, got to come out and spend the day with him. Those two boys love each other so much and it was a neat opportunity for them to just take it easy and hang out together.
Overall, we're optimistic that he'll keep getting stronger over time and by the end of September, his biopsy will show a clean slate. That's the goal, the wish and our prayerful hope.
Each day brings more promise, more sunshine and more proof that God is all merciful and true.
JD
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
Thursday, August 12, 2010
August 13, 2010
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
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
Wednesday, July 28, 2010
July 28, 2010
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.........
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.........
Monday, July 19, 2010
July 19, 2010
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.
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.
Saturday, July 10, 2010
July 11. 2010
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
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
Thursday, July 1, 2010
July 1, 2010
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
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
Monday, June 28, 2010
June 28, 2010
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
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
Saturday, June 26, 2010
June 26. 2010
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
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
Friday, June 25, 2010
June 25, Tough Day
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.
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.
Sunday, June 20, 2010
Father's Day
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
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
Wednesday, June 16, 2010
June 16, 2010
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
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
Friday, June 11, 2010
June 11, 2010
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"
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"
Wednesday, June 9, 2010
June 9, 2010 - New Day, New Chance To Learn
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
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
Monday, June 7, 2010
Birthday Boy
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.
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.
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
As always, standing tall with you before the Cross that heals all hurts. Dynamis Ex Cardias,
JD
Sunday, June 6, 2010
June 6, 2010
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
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