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There are few sounds in life that are quite as beautiful as that of a child laughing. Especially children who haven't had much to laugh about for a few days. Garrett and Jessi were sitting together in the other room just a while ago watching old Carol Burnett shows and having a ball. He's now napping peacefully. He's earned it. What a great day!
You all know that this leg of the journey started on Monday afternoon. Started with a little rash and by Tuesday at 3am, Kathy had Garrett in the bathtub trying to cool him down and relieve the discomfort. By noon he was intermittently inconsolable. By 6pm he looked like a burn victim. He got a little comfort overnight from the oral steroids, but by mid-day Wednesday the pain was setting in. By bedtime, tylenol wasn't touching it. By midnight he was crying in his sleep. By 4am he'd been crying for a couple of hours. By 6am we were in the hospital trying to get an IV started. Over the next 10 hours, Garrett cried. I've seen him in pain before, but I've never witnessed anything like this. Even the nurses were getting tears in their eyes. No one could help him. It would just take time. He was scared that he might be getting paralyzed because he could no longer move his neck by noon on Thursday. Even trying to gently rub his head would bring cries of agony. Every nerve ending was fired up and it hurt for him to even move his fingers. I couldn't hold his hand. From his toes to the top of his head, he hurt. Inside and out. Sometimes he would cry out for Jesus to take the pain away. It was tough to witness.
At one point during the fight, Garrett stopped crying outwardly but the tears continued to stream down his face and he got really mad. He had an extremely angry look come over him and through pursed lips and gritted teeth he told me "daddy, I'm not giving up until God tells me to". It took all the strength I had not to lose it right there. What a statement from a tough little guy who has fought and won, his entire life. This warrior is cowboy tough and then some!
Kathy and I felt so dang helpless the last few days. The doctors couldn't just give him any ol' narcotic pain killers because of the potential for negative effects on his heart and blood pressure. Until he was more stable, they had to run another course. The ran an IV and put steroids in, which are designed to fight the allergic reaction. Basically what happened was that the chemo type infusion he had to undergo to fight the rejection, kills the "T" cells. The little search and destroy guys in the white blood cells. There are some anti-bodies left that don't die from the infusion. These little guys have the same tenacity that Garrett does, and they decided to attack the ATG infusion. During the battle, the molecules lock together and get deposited in nerve endings, joints, bones, skin....you get the picture. Steroids counteract that, but it takes time. Because he was in for heart problems and his blood pressure had been already a little low because that's another side effect of the ATG, they couldn't afford to just load him up on narcotic pain killers. They said this severe a reaction is not common, but is not surprising either.
Knowing all of this didn't make Kathy and I much happier. I was being selfish for my boy and I wanted him to get relief, NOW! It was mid-day on Thursday and Garrett had been in agony of some kind since Monday night. I've never, ever seen him in that much pain for that long. I can't even describe his cry. It tore at my very being. Kathy, too, was shaking it hurt her so much. We left Jessi with my sister-in-law. She didn't need to see her big brother like this.
But relief did finally come. Garrett fell asleep in the hospital bed and slept for about two hours. When he woke up, he was feeling a little better. By 5pm he was feeling much better and by 7pm he could walk on his own. The doctor really did not want Garrett in the hospital. He knew that this was not effecting the heart function, it was just a really nasty side effect from the IV infusion. They left the IV in and sent us home with some strong pain killers now that we were "on top" of the problem. We'd been fighting from behind for a couple of days and it just took a while to get the upper hand. Before we left they admitted that they were concerned about meningitis for a while, because the symptoms mimic each other. Thank God it was not. On the way home he made a very prophetic announcement. He smiled a big smile and said "Jesus is so awesome!!" He was really glad to be out of that hospital.
Garrett had a pretty restless night, so to speak, calling out in his sleep and flopping around quite a bit. "Sir Kicks Alot" thumped me good through the night. But that's ok. It beat being in in the hospital. He doesn't get to sleep next to daddy in there. He woke up this morning with the rash again, but happy and not in a lot of pain (that I know of) We gave him the meds right away and within an hour, he was comfortable again.
It'll probably take up to 14 days for this reaction to run its course, but we're on top of the pain and rash now, so we have the upper hand. Everyone slept a lot better last night and I pulled the IV this morning. We're looking forward to a few days of calm and happy kids. It's hard to believe the change. Garrett looked and acted like a burn victim for nearly 3 days straight, and now he looks and acts just like a normal, happy kid. He hasn't even mentioned the past few days except to say he was so glad Fr. Paul stopped by to pray for him. He and Fr. Paul are buddies and the good Father's visit yesterday was timely and needed. It brought some peace to Garrett's situation, and I'm very grateful for him in our lives. He's truly a holy man of God.
The nurses yesterday were top-shelf, too. They tried everything they could to help Garrett and were very tender. They've known him for years and are very attached to his journey, too. We really count our blessings through the tough spots. We prayed yesterday for Jesus to use our suffering as an offering to help bring others close to him, and to bring comfort to a close friend and cousin who are both battling cancer. In pain, there can be joy when the lesson is not wasted on feeling sorry for yourself. Garrett didn't miss this, either. As we said our prayers last night, he volunteered a special intention for people who "really need Him (Jesus)", and then thanked God for taking such good care of our family.
There are so many of you who are supporting and praying for our little warrior. God bless you all and thanks again for caring. We can't assuage the pain on our own, but we can be in God's tool box to use as He needs to accomplish that mission. You are.
Have a safe weekend and stay the course. We will too.
JD
You all know that this leg of the journey started on Monday afternoon. Started with a little rash and by Tuesday at 3am, Kathy had Garrett in the bathtub trying to cool him down and relieve the discomfort. By noon he was intermittently inconsolable. By 6pm he looked like a burn victim. He got a little comfort overnight from the oral steroids, but by mid-day Wednesday the pain was setting in. By bedtime, tylenol wasn't touching it. By midnight he was crying in his sleep. By 4am he'd been crying for a couple of hours. By 6am we were in the hospital trying to get an IV started. Over the next 10 hours, Garrett cried. I've seen him in pain before, but I've never witnessed anything like this. Even the nurses were getting tears in their eyes. No one could help him. It would just take time. He was scared that he might be getting paralyzed because he could no longer move his neck by noon on Thursday. Even trying to gently rub his head would bring cries of agony. Every nerve ending was fired up and it hurt for him to even move his fingers. I couldn't hold his hand. From his toes to the top of his head, he hurt. Inside and out. Sometimes he would cry out for Jesus to take the pain away. It was tough to witness.
At one point during the fight, Garrett stopped crying outwardly but the tears continued to stream down his face and he got really mad. He had an extremely angry look come over him and through pursed lips and gritted teeth he told me "daddy, I'm not giving up until God tells me to". It took all the strength I had not to lose it right there. What a statement from a tough little guy who has fought and won, his entire life. This warrior is cowboy tough and then some!
Kathy and I felt so dang helpless the last few days. The doctors couldn't just give him any ol' narcotic pain killers because of the potential for negative effects on his heart and blood pressure. Until he was more stable, they had to run another course. The ran an IV and put steroids in, which are designed to fight the allergic reaction. Basically what happened was that the chemo type infusion he had to undergo to fight the rejection, kills the "T" cells. The little search and destroy guys in the white blood cells. There are some anti-bodies left that don't die from the infusion. These little guys have the same tenacity that Garrett does, and they decided to attack the ATG infusion. During the battle, the molecules lock together and get deposited in nerve endings, joints, bones, skin....you get the picture. Steroids counteract that, but it takes time. Because he was in for heart problems and his blood pressure had been already a little low because that's another side effect of the ATG, they couldn't afford to just load him up on narcotic pain killers. They said this severe a reaction is not common, but is not surprising either.
Knowing all of this didn't make Kathy and I much happier. I was being selfish for my boy and I wanted him to get relief, NOW! It was mid-day on Thursday and Garrett had been in agony of some kind since Monday night. I've never, ever seen him in that much pain for that long. I can't even describe his cry. It tore at my very being. Kathy, too, was shaking it hurt her so much. We left Jessi with my sister-in-law. She didn't need to see her big brother like this.
But relief did finally come. Garrett fell asleep in the hospital bed and slept for about two hours. When he woke up, he was feeling a little better. By 5pm he was feeling much better and by 7pm he could walk on his own. The doctor really did not want Garrett in the hospital. He knew that this was not effecting the heart function, it was just a really nasty side effect from the IV infusion. They left the IV in and sent us home with some strong pain killers now that we were "on top" of the problem. We'd been fighting from behind for a couple of days and it just took a while to get the upper hand. Before we left they admitted that they were concerned about meningitis for a while, because the symptoms mimic each other. Thank God it was not. On the way home he made a very prophetic announcement. He smiled a big smile and said "Jesus is so awesome!!" He was really glad to be out of that hospital.
Garrett had a pretty restless night, so to speak, calling out in his sleep and flopping around quite a bit. "Sir Kicks Alot" thumped me good through the night. But that's ok. It beat being in in the hospital. He doesn't get to sleep next to daddy in there. He woke up this morning with the rash again, but happy and not in a lot of pain (that I know of) We gave him the meds right away and within an hour, he was comfortable again.
It'll probably take up to 14 days for this reaction to run its course, but we're on top of the pain and rash now, so we have the upper hand. Everyone slept a lot better last night and I pulled the IV this morning. We're looking forward to a few days of calm and happy kids. It's hard to believe the change. Garrett looked and acted like a burn victim for nearly 3 days straight, and now he looks and acts just like a normal, happy kid. He hasn't even mentioned the past few days except to say he was so glad Fr. Paul stopped by to pray for him. He and Fr. Paul are buddies and the good Father's visit yesterday was timely and needed. It brought some peace to Garrett's situation, and I'm very grateful for him in our lives. He's truly a holy man of God.
The nurses yesterday were top-shelf, too. They tried everything they could to help Garrett and were very tender. They've known him for years and are very attached to his journey, too. We really count our blessings through the tough spots. We prayed yesterday for Jesus to use our suffering as an offering to help bring others close to him, and to bring comfort to a close friend and cousin who are both battling cancer. In pain, there can be joy when the lesson is not wasted on feeling sorry for yourself. Garrett didn't miss this, either. As we said our prayers last night, he volunteered a special intention for people who "really need Him (Jesus)", and then thanked God for taking such good care of our family.
There are so many of you who are supporting and praying for our little warrior. God bless you all and thanks again for caring. We can't assuage the pain on our own, but we can be in God's tool box to use as He needs to accomplish that mission. You are.
Have a safe weekend and stay the course. We will too.
JD
1 comment:
Hi JD. I have been reading your posts everyday and please know that we have been praying for Garrett. What a little angel you have. He is truly the bravest boy I have ever had the pleasure to meet. I am so sorry your family is going through this, it is not fair and no child should ever have to suffer this kind of pain. Nor should any child ever have to go through what Garrett has in his 10 years of life. If there is anything your family ever needs please call or email. Tracy and Mike Horn
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