Tyler has had a rough weekend. He's throwing up quite a bit. Not sure if it's due to the cancer, the chemo or the stomach. So he's been sleeping quite a bit and not feeling well.
Still waiting to hear from the doctors. We didn't really expect to hear much with the holiday weekend upon us. We're hoping for some news on Monday regarding the surgery and a transfer.
Tyler - 17 year old fighting cancer!
Ready for Battle!
Saturday, November 24, 2012
Tuesday, November 20, 2012
Waiting...
Waiting has to be the worst part! The surgeon and the oncologist spent a long time tonight with the family. They explained so very thoroughly what Tyler's current situation is and what they are trying to do next.
As they explained yesterday, they want to put the breaks on the chemo. They clarified that they feel this is a window of opportunity to try and surgically remove the tumor. Tyler is in better shape with the stomach infection. And as they've said, the cancer wasn't even on their radar until that stomach healed more. Now that he is healing from that, they feel that more chemo could risk an infection in the stomach again and that would be steps backwards. With this tera toma cancer, they would try and shrink it and do surgery anyway. So, they are feeling this might be that opportunity and then they could go back in, close the stomach and then do more chemo. Closing his stomach in and of itself is a very major surgery. So they are trying to do what is best for Tyler at every step of this process. (At least this is what I was gathering from their explanation. I hope I understood all of that correctly.)
So...now the waiting game. They are not surgical specialist in this kind of cancer, but they know people who are. Their first phone call was to Dr. Saha in Flint tonight. We are waiting for him to review the case and see if he is willing to do the surgery or make recommendations on others that might consider it. He is a surgical oncologist and has experience with these types of tumors. We're hoping and praying that he will take Tyler. If he will not, we're praying he knows of another specialist that he would recommend.
Please pray for Tyler's doctors. Please pray that they make wise decisions. Please pray that Dr. Saha will consider Tyler and be willing to perform the surgery. Please also pray for peace for this family as we await the news on whether someone will take Tyler's case.
Philippians 4:4-8 Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.
As they explained yesterday, they want to put the breaks on the chemo. They clarified that they feel this is a window of opportunity to try and surgically remove the tumor. Tyler is in better shape with the stomach infection. And as they've said, the cancer wasn't even on their radar until that stomach healed more. Now that he is healing from that, they feel that more chemo could risk an infection in the stomach again and that would be steps backwards. With this tera toma cancer, they would try and shrink it and do surgery anyway. So, they are feeling this might be that opportunity and then they could go back in, close the stomach and then do more chemo. Closing his stomach in and of itself is a very major surgery. So they are trying to do what is best for Tyler at every step of this process. (At least this is what I was gathering from their explanation. I hope I understood all of that correctly.)
So...now the waiting game. They are not surgical specialist in this kind of cancer, but they know people who are. Their first phone call was to Dr. Saha in Flint tonight. We are waiting for him to review the case and see if he is willing to do the surgery or make recommendations on others that might consider it. He is a surgical oncologist and has experience with these types of tumors. We're hoping and praying that he will take Tyler. If he will not, we're praying he knows of another specialist that he would recommend.
Please pray for Tyler's doctors. Please pray that they make wise decisions. Please pray that Dr. Saha will consider Tyler and be willing to perform the surgery. Please also pray for peace for this family as we await the news on whether someone will take Tyler's case.
Philippians 4:4-8 Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near. Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God. And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.
Monday, November 19, 2012
Good News and Devasting News
I've opened up this page multiple times today and can't find the words to put down. Usually it's not so difficult for me, but today I'm actually nervous as I type. It's hard to share the tough news. I tried to be cautious about the good news along the way because my heart continued to tell me that this cancer was going to rear its ugly head again. And it has.
I'm going to start with some news from the weekend that I'm rejoicing in. I'm sure you can tell from my posts that I believe Jesus is the only way, the truth and the life. So, one of my prayers throughout this crazy time was that Tyler would come to know his Savior, Jesus Christ through this. I've been praying fervently that God would allow him enough time to come to know Him. That God would reveal Himself to Tyler in the midst of the sedation. I had felt a real urgency during the first few weeks, along with some of the other Christians in my family, to share the gospel with him, even in the state he's in. We, as well as many chaplains and visiting pastors, spent hours in his room praying, proclaiming the Word over him, talking to him about Jesus and sharing the gospel with others that were at his bedside. Tyler was completely sedated and there was no way of knowing what was breaking through. For the last couple of weeks, though, we had all felt a peace. We weren't able to figure out why that urgency went away, but that peace was something we knew was coming from God.
While in his room this weekend I was able to have a real conversation with him for the first time in about 50 days. I asked if he believed in God. He nodded yes. I asked if he believed in heaven and hell and he nodded yes. I asked if he knew where he would go if he died and he mouthed heaven. I'll pause here and say that this is a question that I've asked a lot of people. Most will tell you they are going to heaven, and most will tell you because they are a good person or they are kind to others or that God is loving. So, then I asked him why he said heaven and to my astonishment he mouthed "His forgiveness". I followed up by asking what He forgives us from and he mouthed "my sin". So I continued down the path of asking if he had ever lied, stolen anything, disobeyed his parents. He answered yes to many of the questions and I explained that even these small things are sin and we cannot stand before a Holy God as a sinner. I started to talk through what Jesus had done...before I even said it he mouthed "He paid my fine for me"! When I asked if he has asked for this forgiveness and believed that Jesus was the only way, he nodded yes! Praise God! That is exactly it! There is nothing we can do to earn this salvation. It can only be a gift from God that Jesus paid this fine for us! I love how God works! I love that he broke through that sedation. I love hearing Tyler make a profession of faith in what Jesus did for him.
While I can rejoice in this fact, I am still devastated and heartbroken when I hear news like we had this morning. Today we were told that they will no longer do chemo. It is not shrinking the tumor the way they had hoped it would. The tumor has wrapped itself around very delicate and important areas of his body. At this point chemo is risky. After this holiday weekend, they want to have him moved or bring a specialist in that will consider other options and possibly surgically remove the tumor. It takes time to process patients and get them to a new hospital, so they are starting that process now because it can't wait. Other hospitals now have the choice of taking him as a patient because he is already being cared for at another hospital. We need a hospital that is willing to perform a very risky surgery on a very rare cancer (on a boy we love very much!). The doctors won't even comment on what his chances are. Any time we ask, they respond with things like "this is a rare cancer" or "this is a very risky surgery". Heartbroken is such an understatement!
I have been seeing God's grace and kindness and mercy over Tyler. I believe it is a miracle that he is still with us and has been healing from the infection in his stomach. I believe in the power of prayer! I believe this kid is a fighter! I believe that these doctors and surgeons are amazing and knowledgeable. As I said the other day, we will continue to be joyful in hope, patient in affliction and praying without ceasing for Tyler. Please continue to join us in that prayer!
I'm going to start with some news from the weekend that I'm rejoicing in. I'm sure you can tell from my posts that I believe Jesus is the only way, the truth and the life. So, one of my prayers throughout this crazy time was that Tyler would come to know his Savior, Jesus Christ through this. I've been praying fervently that God would allow him enough time to come to know Him. That God would reveal Himself to Tyler in the midst of the sedation. I had felt a real urgency during the first few weeks, along with some of the other Christians in my family, to share the gospel with him, even in the state he's in. We, as well as many chaplains and visiting pastors, spent hours in his room praying, proclaiming the Word over him, talking to him about Jesus and sharing the gospel with others that were at his bedside. Tyler was completely sedated and there was no way of knowing what was breaking through. For the last couple of weeks, though, we had all felt a peace. We weren't able to figure out why that urgency went away, but that peace was something we knew was coming from God.
While in his room this weekend I was able to have a real conversation with him for the first time in about 50 days. I asked if he believed in God. He nodded yes. I asked if he believed in heaven and hell and he nodded yes. I asked if he knew where he would go if he died and he mouthed heaven. I'll pause here and say that this is a question that I've asked a lot of people. Most will tell you they are going to heaven, and most will tell you because they are a good person or they are kind to others or that God is loving. So, then I asked him why he said heaven and to my astonishment he mouthed "His forgiveness". I followed up by asking what He forgives us from and he mouthed "my sin". So I continued down the path of asking if he had ever lied, stolen anything, disobeyed his parents. He answered yes to many of the questions and I explained that even these small things are sin and we cannot stand before a Holy God as a sinner. I started to talk through what Jesus had done...before I even said it he mouthed "He paid my fine for me"! When I asked if he has asked for this forgiveness and believed that Jesus was the only way, he nodded yes! Praise God! That is exactly it! There is nothing we can do to earn this salvation. It can only be a gift from God that Jesus paid this fine for us! I love how God works! I love that he broke through that sedation. I love hearing Tyler make a profession of faith in what Jesus did for him.
While I can rejoice in this fact, I am still devastated and heartbroken when I hear news like we had this morning. Today we were told that they will no longer do chemo. It is not shrinking the tumor the way they had hoped it would. The tumor has wrapped itself around very delicate and important areas of his body. At this point chemo is risky. After this holiday weekend, they want to have him moved or bring a specialist in that will consider other options and possibly surgically remove the tumor. It takes time to process patients and get them to a new hospital, so they are starting that process now because it can't wait. Other hospitals now have the choice of taking him as a patient because he is already being cared for at another hospital. We need a hospital that is willing to perform a very risky surgery on a very rare cancer (on a boy we love very much!). The doctors won't even comment on what his chances are. Any time we ask, they respond with things like "this is a rare cancer" or "this is a very risky surgery". Heartbroken is such an understatement!
I have been seeing God's grace and kindness and mercy over Tyler. I believe it is a miracle that he is still with us and has been healing from the infection in his stomach. I believe in the power of prayer! I believe this kid is a fighter! I believe that these doctors and surgeons are amazing and knowledgeable. As I said the other day, we will continue to be joyful in hope, patient in affliction and praying without ceasing for Tyler. Please continue to join us in that prayer!
Sunday, November 18, 2012
Small Victories
Tyler continues to make progress on healing from the infection that came after his stomach perforated. On Friday, he played his DS for most of the day. It was so amazing to see. He's slowly gaining back the simple things that we take for granted every day. With this, does come frustration for Tyler. He's annoyed that he has no privacy and that he has to be taken care of. He's frustrated that he's still laying in this hospital bed. All he wants right now is to get out of there..oh...and to drink a Sonic Slushy.
Our tears of joy at his progress often turn into tears of sympathy as we watch him struggle with the reality of what is going on. He is no longer sedated, but still on heavy pain medications. So, he is often asking what is happening and why he is there. Michelle is super amazing at answering those questions for him. Last week, he asked if he had been shot as he pointed at his stomach in confusion. It's a tough time for him to process all of what is going on. He also gets annoyed that everyone keeps telling him how good he looks. So, I explained to him that a few weeks ago we didn't know if he was going to make it and seeing him this way is so exciting to us and to his doctors and nurses. He asked me if I had taken a picture of him so he could see what everyone was talking about. I told him that I hadn't but that the blog would be a really good picture of what he was going through. When Michelle thinks he's ready to handle it, she told him they would read the blog together.
I encourage you to post comments. I don't think they always function properly on here. They will not show up right after you submit, but they will tell you if it was submitted. So, if you're having trouble and want to send Tyler some words of encouragement that he can read later, you can send him an email at tylerkurkierewicz@gmail.com.
Below is a comment from Tyler's Aunt Tammy that she wasn't able to publish, but I don't like to be the only one talking around here anyway...so here's a comment from Tammy that was supposed to post to the last post:
Our tears of joy at his progress often turn into tears of sympathy as we watch him struggle with the reality of what is going on. He is no longer sedated, but still on heavy pain medications. So, he is often asking what is happening and why he is there. Michelle is super amazing at answering those questions for him. Last week, he asked if he had been shot as he pointed at his stomach in confusion. It's a tough time for him to process all of what is going on. He also gets annoyed that everyone keeps telling him how good he looks. So, I explained to him that a few weeks ago we didn't know if he was going to make it and seeing him this way is so exciting to us and to his doctors and nurses. He asked me if I had taken a picture of him so he could see what everyone was talking about. I told him that I hadn't but that the blog would be a really good picture of what he was going through. When Michelle thinks he's ready to handle it, she told him they would read the blog together.
I encourage you to post comments. I don't think they always function properly on here. They will not show up right after you submit, but they will tell you if it was submitted. So, if you're having trouble and want to send Tyler some words of encouragement that he can read later, you can send him an email at tylerkurkierewicz@gmail.com.
Below is a comment from Tyler's Aunt Tammy that she wasn't able to publish, but I don't like to be the only one talking around here anyway...so here's a comment from Tammy that was supposed to post to the last post:
Thank you for that verse! I am hanging onto being joyful in hope! I just so happen to be reading the blog as I was sitting in Tyler's room today. Not long after reading this, he woke up. He began asking Michelle (his mom) about the trach. He was concerned that it would hurt to talk through it. Michelle, the most amazing and strongest mom in the world, gave the most wonderful explanation! Through her explanation, she plugged the trach and instructed him to talk. How wonderful it was to hear him speak! For those of us who have experienced his frustration with wanting to communicate, can truly understand this joy! I had to hold back tears while hearing his voice! Wow, what we take for granted!!!! On Monday they will put a valve in so he can speak. Please continue to follow the blog for more details on his trach.
Although this is a long and painful process for Tyler and for those who love him so much,we thank you, Lord, for giving us this hope! We continue to have hope, faith, love and trust! We are truly a blessed family!
We are so grateful for all your prayers!
Love,
Tammy
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