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Jessi and I were laying in bed tonight reading scripture and I read the story in Matthew where Christ tells us how to pray. I’ve read that story many times before, but tonight it struck me and I hope God does not consider me a hypocrite by praying publicly in this forum. Please understand that I use this opportunity as a means to share Garrett’s story, but also to share my sincere love of Jesus Christ.
His checkup today went well. Kathy said the bloodwork is stabilizing with no changes, so we don’t have to add any more meds this week. We still don’t have any report on the echo because the doctor was busy and didn’t get a chance to see it today. Hopefully tomorrow. The nurses said that he looks good, though. Everything considered, he’s showing improvement. We’re blessed!
Today is Kathy’s birthday. Because of the crazy situation we find ourselves in, I couldn’t be with her on her big day. Still have bills to pay so I found myself at work. After all she's been through, she deserved to have a special day, just for her. I’ll make it up to her. Take care of those who take care of you. When the chips are down, you need someone to hold your hand and pray with you.
I’m reminded tonight of the centurion who only asked that Jesus say the word and his servant would be healed. I am a modern day centurion who wears the uniform of authority and has soldiers (police officers) under my command. I, too, do not deserve to have Jesus in my life. But I know with every ounce of faith within me that should Jesus but say the word and Garrett will be healed.
Have a tremendous weekend and enjoy all the wonders our Creator has made.
Thursday, June 3, 2010
Wednesday, June 2, 2010
June 2, 2010
B-cells, T-cells, auto-antibody rejection, acute rejection, chronic rejection, acute vascular or humoral rejection, OKT-3, IVIG, CD4-T cells, CD3, lymphocites, fibrosis, mycophenolate, myocardial movement, imuran, immunosuppression, chemotherapy, plasmapheresis......................the list goes on and on.
These are but a few of the words and terms we've learned and heard about in the past few months. None of them make a whole lot of sense on their own. They are medicines, cells, diseases and treatments. The discussions that have developed because of Garrett's issues have included some or all of these at one point or another, but all we really know is that it's not "take two aspirin and call me in the morning." I wish it were that easy. We just want our healthy, happy boy back home again and playing in his yard.
The fact remains that his heart is sick and it needs to get better. We've learned that he has three different rejections going on. A battle on three fronts. He's fighting T-cell rejection from his body attacking his heart, and he's fighting B-cell auto-antibody rejection from his current heart and traces from his last heart that were never discovered.
We also know that Garrett was feeling better today and that is a blessing to us all. That's why I often say that every day is a victory. When we pray at night before we try to sleep, we ask God to hear us clearly. To see us holding Garrett up to Jesus in prayer and beseeching Him to grant our request. Nothing is impossible with God. Nothing.
I believe there are blessings of grace when we accept the pain and offer it for lost souls. Our fight is difficult, but it has a glorious gift at the end......Paradise. I cannot imagine going into a fight with only the earthly gratifications as our only reward. For 11 years now we have fought on this battleground. Somehow in His infinite love, God picks us up just when we can't take another step. He manages to give a sick little boy the ability to smile and play when he wakes up just a little better than he was the day before.
There are brighter days ahead, but darker ones may also linger in the shadows. Garrett wants to live. He wants to run and play and forget about the pain, needles, hospital beds and nightmares. I want that for him. But if I want for too much, too soon, impatience can cause more disappointment. So we will continue to wake each day and call it a victory, rejoice in the little achievements and pray that as time goes by, this pony's steps will become lighter and the grass will get a little greener.
We may have three fights going on at one time, but we also have a Trinity of power who have already won this biggest battle of all. So this battle is nothing. I'm just thankful for the little victories right now. Every day that Garrett wakes up and feels better, it's as if he forgot any pain from yesterday. This enthusiasm strengthens us, and it gives him more strength to fight the beast another day, hopefully knocking it out of the park this time.
Be blessed,
JD
These are but a few of the words and terms we've learned and heard about in the past few months. None of them make a whole lot of sense on their own. They are medicines, cells, diseases and treatments. The discussions that have developed because of Garrett's issues have included some or all of these at one point or another, but all we really know is that it's not "take two aspirin and call me in the morning." I wish it were that easy. We just want our healthy, happy boy back home again and playing in his yard.
The fact remains that his heart is sick and it needs to get better. We've learned that he has three different rejections going on. A battle on three fronts. He's fighting T-cell rejection from his body attacking his heart, and he's fighting B-cell auto-antibody rejection from his current heart and traces from his last heart that were never discovered.
We also know that Garrett was feeling better today and that is a blessing to us all. That's why I often say that every day is a victory. When we pray at night before we try to sleep, we ask God to hear us clearly. To see us holding Garrett up to Jesus in prayer and beseeching Him to grant our request. Nothing is impossible with God. Nothing.
I believe there are blessings of grace when we accept the pain and offer it for lost souls. Our fight is difficult, but it has a glorious gift at the end......Paradise. I cannot imagine going into a fight with only the earthly gratifications as our only reward. For 11 years now we have fought on this battleground. Somehow in His infinite love, God picks us up just when we can't take another step. He manages to give a sick little boy the ability to smile and play when he wakes up just a little better than he was the day before.
There are brighter days ahead, but darker ones may also linger in the shadows. Garrett wants to live. He wants to run and play and forget about the pain, needles, hospital beds and nightmares. I want that for him. But if I want for too much, too soon, impatience can cause more disappointment. So we will continue to wake each day and call it a victory, rejoice in the little achievements and pray that as time goes by, this pony's steps will become lighter and the grass will get a little greener.
We may have three fights going on at one time, but we also have a Trinity of power who have already won this biggest battle of all. So this battle is nothing. I'm just thankful for the little victories right now. Every day that Garrett wakes up and feels better, it's as if he forgot any pain from yesterday. This enthusiasm strengthens us, and it gives him more strength to fight the beast another day, hopefully knocking it out of the park this time.
Be blessed,
JD
Tuesday, June 1, 2010
June 1, 2010
Garrett's check up today showed that his anti-rejection blood levels are a little off, so they re-adjusted his meds again. More of that ol' balancing act. We learned that they didn't see any changes in his heart echo, which was a little disappointing but we're grateful it at least didn't go backward again. The past few had shown definate improvement in his heart function and the doctors told us that they need to see continued improvement. Obviously we wanted improvement, but it could just take a while.
On the brighter side, Garrett's little rash has subsided and his other issues were better tonight. He told me on the phone that he didn't feel "great" but he felt "good enough". I'll go with that. We can't be too selfish and have to remember that patience truly is a virtue.
I want to share part of a note that my sweet niece gave to me today when I got home. She is such a special lady and has a great walk with Christ. In her note, she wrote to me the following - "Never forget that you are enclosed in the most Sacred Heart of Jesus and it is there that He will protect you and reward you."
Here's hoping that the Sacred Heart of Jesus envelopes you all for a wonderfully blessed week.
In Him,
JD
On the brighter side, Garrett's little rash has subsided and his other issues were better tonight. He told me on the phone that he didn't feel "great" but he felt "good enough". I'll go with that. We can't be too selfish and have to remember that patience truly is a virtue.
I want to share part of a note that my sweet niece gave to me today when I got home. She is such a special lady and has a great walk with Christ. In her note, she wrote to me the following - "Never forget that you are enclosed in the most Sacred Heart of Jesus and it is there that He will protect you and reward you."
Here's hoping that the Sacred Heart of Jesus envelopes you all for a wonderfully blessed week.
In Him,
JD
Monday, May 31, 2010
May 31, 2010
We’ve had a super weekend, setting aside, if not momentarily forgetting the fear and it is now coming to a close. Garrett is starting to hurt again, probably as a reaction to the infusions from Friday and we’re praying he doesn’t get full-blown serum sickness again. Just the thought of it is disturbing and scares him a lot. He just got done asking me to take his vital signs again. I’m up with him tonight because the discomfort is making it hard for him to sleep. We’ve been trying to change the subject by discussing how much fun we had this weekend.
Yesterday we had a visit from great friends and today we got permission to take Garrett to a roping event for Western Wishes for a few hours. It was a tremendous experience and the winners of the mixed team roping, Jay and Tammy Ellerman gave their winning buckles to Jessi and Garrett and donated their winning money back to the event. That’s the second buckle Garrett got this weekend. Western Wishes also made a special presentation to him of a “Western Wishes Champion” buckle. The loving kindness of these and so many folks continues to amaze and humble me. Kathy even made a new friend at the roping whose son had open heart surgery several years ago. The two women found a lot in common, and through tears of remembrance and happiness, shared a unique bond that only mothers of sick children can know.
Garrett did really well today as the buckle presenter with Jessi as his assistant. They also gave each winner a “Cowboy Up” bracelet. The roping event today concluded a three-day event to raise money to help start a Colorado chapter of Western Wishes. As many of you know, Garrett has been a recipient of Western Wishes dreams in the past and we are so honored to use our story to help the program reach out to other kids. The cowboy family is very special. They often pull together to help each other as they did 100 years ago. I recently asked Garrett which charity he would choose to help support if we were ever able to be in a position to do so. Without a second thought, he said “Western Wishes”. He said there’s a few others like Transplant International and the American Heart Association, but the Western Wishes organization is set up to help sick and injured cowboy kids to just be kids again for a little while at a special cowboy events. In our lives, the blessings of Western Wishes have brought smiles to Garrett and Jessi time and again, and we will always be grateful for them and what they do. They work for God. www.westernwishes.org
Tomorrow brings us back to the hospital and with good news from that, sends me back to work. I hate leaving Kathy and the kids and can already feel myself tightening up. With this new leg of the journey upon us, it sure looks as though we’ll be doing this all summer. I know they’re in good hands up here, but in these uncertain times it makes it so very tough to drive away from them.
We keep trying to stay positive and thanking God every day for our blessings. Sometimes overwhelming thoughts of “why” and “what next” crop up and they make it hard to sleep, but that’s just the enemy trying to take control. We know that it may take many months for Garrett to heal completely and could even require another tour in the hospital if this round didn’t whip all the bad guys. We hope not, but that’s the reality. Garrett has accepted the fact that he will spend his birthday away from home. With this last fight the past few weeks our waiting time starts all over again. I’d like to say that as a family we’re always patient with each other but that would be a lie. But overall, I’m proud of how everyone is handling the ambiguity that is life right now. Occasional weekends like this one go a long way to suppressing the anxiety and unanswered questions.
With guardian angels working overtime I’m hoping Garrett will be blessed with fitless rest tonight. We’ll wake tomorrow having again made the decision to accept the situation, wrap ourselves in the Lord’s mighty armor and take the fight to the enemy. As our little warrior cowboy’d up again today, demonstrating that he truly is a cowboy gentleman, we’ll cowboy up along side of him.
JD
Yesterday we had a visit from great friends and today we got permission to take Garrett to a roping event for Western Wishes for a few hours. It was a tremendous experience and the winners of the mixed team roping, Jay and Tammy Ellerman gave their winning buckles to Jessi and Garrett and donated their winning money back to the event. That’s the second buckle Garrett got this weekend. Western Wishes also made a special presentation to him of a “Western Wishes Champion” buckle. The loving kindness of these and so many folks continues to amaze and humble me. Kathy even made a new friend at the roping whose son had open heart surgery several years ago. The two women found a lot in common, and through tears of remembrance and happiness, shared a unique bond that only mothers of sick children can know.
Garrett did really well today as the buckle presenter with Jessi as his assistant. They also gave each winner a “Cowboy Up” bracelet. The roping event today concluded a three-day event to raise money to help start a Colorado chapter of Western Wishes. As many of you know, Garrett has been a recipient of Western Wishes dreams in the past and we are so honored to use our story to help the program reach out to other kids. The cowboy family is very special. They often pull together to help each other as they did 100 years ago. I recently asked Garrett which charity he would choose to help support if we were ever able to be in a position to do so. Without a second thought, he said “Western Wishes”. He said there’s a few others like Transplant International and the American Heart Association, but the Western Wishes organization is set up to help sick and injured cowboy kids to just be kids again for a little while at a special cowboy events. In our lives, the blessings of Western Wishes have brought smiles to Garrett and Jessi time and again, and we will always be grateful for them and what they do. They work for God. www.westernwishes.org
Tomorrow brings us back to the hospital and with good news from that, sends me back to work. I hate leaving Kathy and the kids and can already feel myself tightening up. With this new leg of the journey upon us, it sure looks as though we’ll be doing this all summer. I know they’re in good hands up here, but in these uncertain times it makes it so very tough to drive away from them.
We keep trying to stay positive and thanking God every day for our blessings. Sometimes overwhelming thoughts of “why” and “what next” crop up and they make it hard to sleep, but that’s just the enemy trying to take control. We know that it may take many months for Garrett to heal completely and could even require another tour in the hospital if this round didn’t whip all the bad guys. We hope not, but that’s the reality. Garrett has accepted the fact that he will spend his birthday away from home. With this last fight the past few weeks our waiting time starts all over again. I’d like to say that as a family we’re always patient with each other but that would be a lie. But overall, I’m proud of how everyone is handling the ambiguity that is life right now. Occasional weekends like this one go a long way to suppressing the anxiety and unanswered questions.
With guardian angels working overtime I’m hoping Garrett will be blessed with fitless rest tonight. We’ll wake tomorrow having again made the decision to accept the situation, wrap ourselves in the Lord’s mighty armor and take the fight to the enemy. As our little warrior cowboy’d up again today, demonstrating that he truly is a cowboy gentleman, we’ll cowboy up along side of him.
JD
May 30, 2010
Let me first apologize for not updating this in the past few days. In my selfishness, I failed to let everyone know that we are OUT of the hospital again! After so many days of hospital living, we're all kind of worn out and being selfish with our time together.
After Friday’s infusions of more anti-rejection chemos and IV steroid, we were given the weekend off. Garrett was allowed to stay at the motel with us and we just hunkered down to soak up the sunshine that had just been injected into our lives. In addition to the IV immune globulin treatment to help develop antibodies to protect against infections, they infused a substance called Rituximab. It’s frequently used in chemotherapy treatment for types of non-Hodgkins lymphomas as a T-cell attack. So far, Garrett has not had any significant reaction to this medicine like he did with the anti-thymocite globulin used last time, but we won’t be clear of that possibility for about a week.
The past few days have been wonderful. Garrett and Jessi have been laughing and playing like they haven’t done for two months. We’re keeping a close eye on his activities so he won’t over do it, but at the same time we don’t want to make him live in a bubble and are letting him be a little boy for a few days. On Tuesday, we’ll be back to the hospital for a checkup and if the echo shows improvement, we have even more reason to be hopeful. If so, he gets to stay out of the hospital and move back to his aunt’s house. If not, he may end up back in-patient for more infusions. Either way, we’re back to step-one of the waiting game. Another biopsy is planned in about 6 weeks.
We ran into another family the other day, who like us, have a very sick child. We hurt for them because they don’t seem to have the spiritual healing and faith to help them fight their predicament. One of the father’s comments was “we’re just getting by one day at a time and it just sucks the wind out of you”. “The whole thing sucks. Financially, our backs are against the wall and we just wake every day to see if (their child) is worse, or just crappy”. I’ve said it before, but I really don’t know how anyone can go through this type of emotional trauma without God to help the heartbreak. We’re praying for them and would appreciate it if you would, too.
Don’t get me wrong, we’re not running around singing and dancing every day, but if we wake up tomorrow, we know we have the chance to keep fighting and praise God for that opportunity. We’ve sure felt like dancing the past few days, though. With his little body starting to replace the good things removed during the plasmapheresis, Garrett is feeling so much better. It really is a joy to see the transformation. His color is back and there’s a twinkle in his eyes. Let’s just keep praying that the future reveals that the rejection is now stopped and only healing remains. His heart rate continues to bounce around, but I’m hoping it’s only because like any wounded muscle, it needs time to get back into shape.
For now, we’re having fun with our new found freedom and may even go watch a roping on Memorial Day. His immune system is drained again so extra-special precautions are in order, but he’s happy and right now, that’s good enough. We're not out of the woods, but I think I might see timberline up ahead. We know that we’re ok. One way or the other, God promised over and over again. We have to believe in that fact. While the fear still resides, we won't let it win because we keep reminding ourselves of our Lord's promises.
Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need. (Hebrews 4:16)
Hard to argue with that, huh?
God bless,
JD
After Friday’s infusions of more anti-rejection chemos and IV steroid, we were given the weekend off. Garrett was allowed to stay at the motel with us and we just hunkered down to soak up the sunshine that had just been injected into our lives. In addition to the IV immune globulin treatment to help develop antibodies to protect against infections, they infused a substance called Rituximab. It’s frequently used in chemotherapy treatment for types of non-Hodgkins lymphomas as a T-cell attack. So far, Garrett has not had any significant reaction to this medicine like he did with the anti-thymocite globulin used last time, but we won’t be clear of that possibility for about a week.
The past few days have been wonderful. Garrett and Jessi have been laughing and playing like they haven’t done for two months. We’re keeping a close eye on his activities so he won’t over do it, but at the same time we don’t want to make him live in a bubble and are letting him be a little boy for a few days. On Tuesday, we’ll be back to the hospital for a checkup and if the echo shows improvement, we have even more reason to be hopeful. If so, he gets to stay out of the hospital and move back to his aunt’s house. If not, he may end up back in-patient for more infusions. Either way, we’re back to step-one of the waiting game. Another biopsy is planned in about 6 weeks.
We ran into another family the other day, who like us, have a very sick child. We hurt for them because they don’t seem to have the spiritual healing and faith to help them fight their predicament. One of the father’s comments was “we’re just getting by one day at a time and it just sucks the wind out of you”. “The whole thing sucks. Financially, our backs are against the wall and we just wake every day to see if (their child) is worse, or just crappy”. I’ve said it before, but I really don’t know how anyone can go through this type of emotional trauma without God to help the heartbreak. We’re praying for them and would appreciate it if you would, too.
Don’t get me wrong, we’re not running around singing and dancing every day, but if we wake up tomorrow, we know we have the chance to keep fighting and praise God for that opportunity. We’ve sure felt like dancing the past few days, though. With his little body starting to replace the good things removed during the plasmapheresis, Garrett is feeling so much better. It really is a joy to see the transformation. His color is back and there’s a twinkle in his eyes. Let’s just keep praying that the future reveals that the rejection is now stopped and only healing remains. His heart rate continues to bounce around, but I’m hoping it’s only because like any wounded muscle, it needs time to get back into shape.
For now, we’re having fun with our new found freedom and may even go watch a roping on Memorial Day. His immune system is drained again so extra-special precautions are in order, but he’s happy and right now, that’s good enough. We're not out of the woods, but I think I might see timberline up ahead. We know that we’re ok. One way or the other, God promised over and over again. We have to believe in that fact. While the fear still resides, we won't let it win because we keep reminding ourselves of our Lord's promises.
Let us then approach the throne of grace with confidence, so that we may receive mercy and find grace to help us in our time of need. (Hebrews 4:16)
Hard to argue with that, huh?
God bless,
JD
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