Thank you for your prayers. Our God is an awesome God. Tyler had a much better day yesterday. His Aunt Patty called me excitedly to report that he broke his personal record. He walked 220 feet on his own yesterday! All the way down the hallway. How cool is that?!
He was also up for most of the day, and was even texting a friend. I think that's a first in a long while for him.
Keep praying for more days like this!
Tyler - 17 year old fighting cancer!
Ready for Battle!
Tuesday, April 23, 2013
Monday, April 22, 2013
Weekend Update
Tyler had a bit of a scare on Saturday night. His blood pressure dropped significantly and he started having issues with his bowel obstruction again. His blood pressure was very low (top number was 80) and they worked hard to get it back up through fluids, rather than additional medication. They will be watching that very closely. If it drops below 90 (top number) again, he will have to move to the ICU, where they can administer medication to regulate it. He is also back on food and drink restrictions, to give his bowel a rest. This makes him pretty miserable...to only get his sips all day. Ugh!
He's still very tired. They are working to adjust his pain medication so that he is not as sedated. They would like him to be awake more so that he can go to PT and OT. They need him to be strong to endure these cancer medications. Kind of that double edged sword again...because to be strong, he's going to have to endure some pain :(
On a good note, his blood pressure has stayed level since Saturday and his tumor markers are down from 450 to 260! The medication is starting to work.We'll take whatever good news we can get!
Stay strong, Ty!
He's still very tired. They are working to adjust his pain medication so that he is not as sedated. They would like him to be awake more so that he can go to PT and OT. They need him to be strong to endure these cancer medications. Kind of that double edged sword again...because to be strong, he's going to have to endure some pain :(
On a good note, his blood pressure has stayed level since Saturday and his tumor markers are down from 450 to 260! The medication is starting to work.We'll take whatever good news we can get!
Stay strong, Ty!
Tuesday, April 16, 2013
Quick update
Just a quick update. Despite how tired Tyler was yesterday, he still got up and got in his wheelchair for some occupational therapy. That probably doesn't sound like much to some of you, but it's actually a big deal these days. He is tenacious! Also, kudos to his mom who lifts him and helps him walk and gets him in his chair. It's not an easy task, and she's pretty amazing!
And, the update a lot of you have been waiting for...he can now drink 24 oz a day! Thank you for joining in a bit of his suffering if you opted to give something up for him. I don't want to discourage you from continuing, but I'm drinking a tea right now :) and still praying without ceasing for Tyler!
While you're praying, Michelle also asked me to put a request out there for a boy named Alec. He's waiting to see if his bone marrow is ready for a transplant. Let's lift another young man up this morning too. Much love to you all. Thanks again for your continued prayers.
And, the update a lot of you have been waiting for...he can now drink 24 oz a day! Thank you for joining in a bit of his suffering if you opted to give something up for him. I don't want to discourage you from continuing, but I'm drinking a tea right now :) and still praying without ceasing for Tyler!
While you're praying, Michelle also asked me to put a request out there for a boy named Alec. He's waiting to see if his bone marrow is ready for a transplant. Let's lift another young man up this morning too. Much love to you all. Thanks again for your continued prayers.
Monday, April 15, 2013
Clinical trial - part 2
Tyler remains heavily medicated and mostly sleeping right now. At last count, I believe he was on 4 antibiotics, an immune booster, a chemo treatment, some other cancer treatment, an anti-fungal, round the clock pain meds, a bag of nutrition, a pain pump with methadone and blood transfusions. Phew! I guess anyone would be sleepy with all that going on. His IV pole is looking quite busy again...
I was there on Friday night when the nurse was getting ready to administer the next round of meds. Tyler woke up a bit and asked, "Oh, are we starting the medication today?". He hadn't even remembered that it started the night before and they ran a million tests on him during the night because of the increased heart rate and such. He had slept through most of it. So I guess that is a good thing. The less he has to worry about, the better!
Still no word from surgery on if he can have anything to drink yet...so if you have chosen to fast and pray with us, please continue to do so. Stay strong! I know it's tough!!
Some people have asked me for more details on the clinical trial. I don't have much more than what I said in the last post. I did read the medical journal entry about it and most of it I didn't understand (a lot of medical terminology), but followed the concept. The first page looked like a page right out of Tyler's history book because this other boy's case was so very similar - a 17 year old with the same type of teratoma tumor, growing rapidly and not responding to chemo treatments. They deemed him "incurable" as well.
The main difference is that the other boy was "healthier". Meaning, he was able to do the entire 18 months of treatment out-patient and with minimal side effects. It noted that he was still able to go to school. Tyler is much sicker, but his tumor is not growing as rapidly as the other boy. The ray of hope is that the other boy had favorable results. He was deemed "fatal" and "incurable", but after this treatment the tumor shrunk. Then he was able to go through "excessive surgical resection" to have the tumor removed. The article noted that he had been disease free for 2 years (article was published in 2009, but it wasn't 100% clear on when this trial occurred).
The seriousness of this should still not be taken lightly. To get approval to do the treatment, this boy's doctors had to go to the board of ethics and it also noted they had to find a surgical team that was still willing to take a chance on doing the surgery after the treatment. In Tyler's case, they didn't have to go to that extreme to get approval to start the treatment, but they did require Tyler's signature, Michelle's signature and an additional witness. This is serious business and we are still continuing to pray for Tyler and a positive outcome from this treatment.
Thank you for your continued prayers and support. I don't think we can ever properly express our gratitude to you all for joining us on this journey. God Bless!
I was there on Friday night when the nurse was getting ready to administer the next round of meds. Tyler woke up a bit and asked, "Oh, are we starting the medication today?". He hadn't even remembered that it started the night before and they ran a million tests on him during the night because of the increased heart rate and such. He had slept through most of it. So I guess that is a good thing. The less he has to worry about, the better!
Still no word from surgery on if he can have anything to drink yet...so if you have chosen to fast and pray with us, please continue to do so. Stay strong! I know it's tough!!
Some people have asked me for more details on the clinical trial. I don't have much more than what I said in the last post. I did read the medical journal entry about it and most of it I didn't understand (a lot of medical terminology), but followed the concept. The first page looked like a page right out of Tyler's history book because this other boy's case was so very similar - a 17 year old with the same type of teratoma tumor, growing rapidly and not responding to chemo treatments. They deemed him "incurable" as well.
The main difference is that the other boy was "healthier". Meaning, he was able to do the entire 18 months of treatment out-patient and with minimal side effects. It noted that he was still able to go to school. Tyler is much sicker, but his tumor is not growing as rapidly as the other boy. The ray of hope is that the other boy had favorable results. He was deemed "fatal" and "incurable", but after this treatment the tumor shrunk. Then he was able to go through "excessive surgical resection" to have the tumor removed. The article noted that he had been disease free for 2 years (article was published in 2009, but it wasn't 100% clear on when this trial occurred).
The seriousness of this should still not be taken lightly. To get approval to do the treatment, this boy's doctors had to go to the board of ethics and it also noted they had to find a surgical team that was still willing to take a chance on doing the surgery after the treatment. In Tyler's case, they didn't have to go to that extreme to get approval to start the treatment, but they did require Tyler's signature, Michelle's signature and an additional witness. This is serious business and we are still continuing to pray for Tyler and a positive outcome from this treatment.
Thank you for your continued prayers and support. I don't think we can ever properly express our gratitude to you all for joining us on this journey. God Bless!
Friday, April 12, 2013
Clinical Trial
Last week, Michelle was presented with a clinical trial for which Tyler qualified to be a candidate. I haven't said anything about it up until now because things are ever changing with his case and I didn't want to again present a treatment plan that had the potential of not happening.
Anyhow, this trial has only been done once, ever, on a boy with a similar case to Tyler's. That was in Germany some years ago. So, Tyler is the only person in the US to ever try this treatment. They plan to use 4 different drugs, which have all been used to treat tumors, but not ever all together all at once. So, we're not sure of the success rate, or the side effects that they will have on him.
The medications started last night. And the side effects kicked in soon after. Tyler started running a really high very and a high heart rate at 1:00 AM this morning. His night was spent running a ton of tests and trying to figure out what was going on and get the fever back down.
It's with a heavy heart that I write this today. I know the suffering and pain he is in and I know this seems to be a last ray of hope, but I hate when I hear that he's suffering more. Please lift Tyler up in prayer for relief from these side effects. Please pray for his protection and comfort. Pray that these drugs will shrink the tumor and kill the cancer, without too much damage to our boy.
Anyhow, this trial has only been done once, ever, on a boy with a similar case to Tyler's. That was in Germany some years ago. So, Tyler is the only person in the US to ever try this treatment. They plan to use 4 different drugs, which have all been used to treat tumors, but not ever all together all at once. So, we're not sure of the success rate, or the side effects that they will have on him.
The medications started last night. And the side effects kicked in soon after. Tyler started running a really high very and a high heart rate at 1:00 AM this morning. His night was spent running a ton of tests and trying to figure out what was going on and get the fever back down.
It's with a heavy heart that I write this today. I know the suffering and pain he is in and I know this seems to be a last ray of hope, but I hate when I hear that he's suffering more. Please lift Tyler up in prayer for relief from these side effects. Please pray for his protection and comfort. Pray that these drugs will shrink the tumor and kill the cancer, without too much damage to our boy.
Thursday, April 11, 2013
What do you crave?
Poor Ty still can't have anything to eat or drink...at least until Monday. He hasn't complained about much since his life (as he knew it) was ripped away from him and he has since spent it laying in a hospital bed for almost 7 months. But man, it is really bothering him that he can't have anything to drink. He's so thirsty!!
My mom sat with him yesterday and told me how bad she felt that he couldn't have anything to drink. So, she challenged me on this one...posing the question of what it would be like to want something so bad and not be able to have it.
The thing I love most in the day is a hot tea. I can't make it a day without one, or 3 or 7 :)
What about you? What do you crave? If tomorrow you were told you couldn't have it, how miserable would you be?
Here's one way we can empathize with Tyler. Will you join me in this bit of "suffering"?
I'm giving up my hot tea, at least until Monday. My family is joining me too...my 8 yr old gave up screen time (whoa!), my 4 year old gave up video games (whoa!) and my husband is giving up coffee (double whoa!!).
Whenever we think about that thing we want so much, we'll stop and instead spend some time praying for Tyler and his suffering. Praying that God would comfort him at this time.
John 4:13-14: Jesus answered and said to her, “Everyone who drinks of this water will thirst again; but whoever drinks of the water that I will give him shall never thirst; but the water that I will give him will become in him a well of water springing up to eternal life.”
My mom sat with him yesterday and told me how bad she felt that he couldn't have anything to drink. So, she challenged me on this one...posing the question of what it would be like to want something so bad and not be able to have it.
The thing I love most in the day is a hot tea. I can't make it a day without one, or 3 or 7 :)
What about you? What do you crave? If tomorrow you were told you couldn't have it, how miserable would you be?
Here's one way we can empathize with Tyler. Will you join me in this bit of "suffering"?
I'm giving up my hot tea, at least until Monday. My family is joining me too...my 8 yr old gave up screen time (whoa!), my 4 year old gave up video games (whoa!) and my husband is giving up coffee (double whoa!!).
Whenever we think about that thing we want so much, we'll stop and instead spend some time praying for Tyler and his suffering. Praying that God would comfort him at this time.
John 4:13-14: Jesus answered and said to her, “Everyone who drinks of this water will thirst again; but whoever drinks of the water that I will give him shall never thirst; but the water that I will give him will become in him a well of water springing up to eternal life.”
Monday, April 8, 2013
What a fighter
Tyler's x-rays are showing some improvements in the bowels. He still hasn't had anything to eat or drink since last week. He's really craving a coke!!
He is getting another CT scan today, which will tell us more. He went to physical therapy today, though, and walked about 90 feet!
What a kid! I think I continue to say this because it surprises me. When Tyler said he wanted to go in the Army, I have to admit, I didn't think he had the strength. I had no idea what was behind that quiet exterior of his. His will and drive to survive is incredibly astounding to me, having known him his whole life. I didn't think he had it in him. Boy, I'm glad I was wrong.
Shine on Tyler!! Love you, kid!! And thank you all for your prayers!
He is getting another CT scan today, which will tell us more. He went to physical therapy today, though, and walked about 90 feet!
What a kid! I think I continue to say this because it surprises me. When Tyler said he wanted to go in the Army, I have to admit, I didn't think he had the strength. I had no idea what was behind that quiet exterior of his. His will and drive to survive is incredibly astounding to me, having known him his whole life. I didn't think he had it in him. Boy, I'm glad I was wrong.
Shine on Tyler!! Love you, kid!! And thank you all for your prayers!
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