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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
Saturday, June 26, 2010
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
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