The surgeons opted not to do anything surgically to correct Tyler's j-tube, due to possible infection risk, scar tissue, etc. They are just monitoring it and starting back his feeding and meds slowly...to make sure they do not drain out.
Other than that, no real changes to report. That's my quick update.
God Bless!
Tyler - 17 year old fighting cancer!
Ready for Battle!
Tuesday, May 14, 2013
Thursday, May 9, 2013
A rough week
I think coming up with a title for these posts is often difficult. I'm not sure what to name this one. I guard my words, constantly, trying not to be too negative or overly excited about the glimpses of positive. There isn't any really bad news today. Tyler has just had a couple of bad days. He's not feeling good at all. He's had some opportunities to go outside and get some sunshine, still, but just overall not feeling good this week.
Also, his j-tube (drain for the stomach) isn't working properly. So, he can't have drinks again (UGH!) or have half of his meds, including one of the cancer treatments. We are waiting to hear from surgery on the plan to put it back in the right place.
Please keep him in your prayers, as always. Thank you!
Also, his j-tube (drain for the stomach) isn't working properly. So, he can't have drinks again (UGH!) or have half of his meds, including one of the cancer treatments. We are waiting to hear from surgery on the plan to put it back in the right place.
Please keep him in your prayers, as always. Thank you!
Some encouragement from 1 Peter 1 for my fellow believers in Jesus Christ:
3 Blessed
be the God and Father of our Lord Jesus Christ! According to his great
mercy, he has caused us to be born again to a living hope through the
resurrection of Jesus Christ from the dead, 4 to an inheritance that is imperishable, undefiled, and unfading, kept in heaven for you, 5 who by God's power are being guarded through faith for a salvation ready to be revealed in the last time.
6 In this you rejoice, though now for a little while, if necessary, you have been grieved by various trials, 7 so
that the tested genuineness of your faith—more precious than gold that
perishes though it is tested by fire—may be found to result in praise
and glory and honor at the revelation of Jesus Christ.
8 Though
you have not seen him, you love him. Though you do not now see him, you
believe in him and rejoice with joy that is inexpressible and filled
with glory, 9 obtaining the outcome of your faith, the salvation of your souls.
Monday, May 6, 2013
Sunshine and Motivation
We're finally getting some nice weather here in Michigan and that has allowed for Tyler to get outside a couple of times. He went outside on Thursday afternoon, but PT made him work a bit. He had to walk to his wheelchair and then wheel it to the elevator. That was A LOT of work for him to get outside. He was completely exhausted after that.
On Saturday, his nurse asked him if he wanted to go out and he said no. He didn't want to have to work that hard again. Andrew, his nurse, told him he wouldn't make him work at all...he would just take him out there because it was so beautiful. Tyler agreed. He went out for 15-20 minutes and just soaked up the sunshine. It was still a little work, because just sitting in his wheelchair is work for him. But, he enjoyed it. They could only stay out a bit because he is sensitive to the sun, due to the chemo. But, for the first time in 7 months, he got to go outside, and enjoy some sunshine!
On Sunday morning he woke up and said, "Bring me my chair, I'm not sitting in this bed all day!". Michelle and I had to laugh. We had not seen him that motivated before. So we started joking with him...asking if he was going to train to run a marathon or something. He said he's just sick of the hospital. If that's not an understatement, I don't know what is!
So, he got up and sat in his chair for nearly an hour. When he was tired, he got back in bed, but while he was working on getting back in, he said, "I'm going to get back in there in a little bit". I've watched the effort it takes for him to get up and in and out of the chair and the bed. I assure you it is the equivalent of me running a mile. It is work and it takes effort and concentration and endurance. After about a 20 minute rest, he asked for his chair again and got back in. This kid continues to amaze me!
On another note, he FINALLY gets to have something to drink. In the last 30 days, he's only had 3-4 days where he could drink something. On Saturday, he was allowed to have 8 oz a day. On Sunday, Michelle went to the regular daily rounds, ready to fight to get him 2 more ounces. :) She even bragged about all the work he was doing, sitting in his chair and going outside. She said she was going to hang a sign on his door that says "Will work for drinks!". The doctor realized this drink was very important to him. I saw this moment of compassion in him and he told the resident to go talk to surgery about being more liberal with his drinks. He said, "Let's give him his Coke!". Because I'm a total sap, I started crying after I thanked the doctor. I was just so overwhelmed because this drink IS important to him and I was so happy to hear that the doctors finally saw that! Let's hope surgery has as much compassion!
Finally, I received a text from Michelle later yesterday, after I had left. She let me know that Tyler walked much further than he had in the past. He probably doubled the length he has done in the past. He's motivated. He's strong and tenacious. I just love that kid! He inspires me to never ever give up. No matter how tired and sick he is...he's still fighting.
On Saturday, his nurse asked him if he wanted to go out and he said no. He didn't want to have to work that hard again. Andrew, his nurse, told him he wouldn't make him work at all...he would just take him out there because it was so beautiful. Tyler agreed. He went out for 15-20 minutes and just soaked up the sunshine. It was still a little work, because just sitting in his wheelchair is work for him. But, he enjoyed it. They could only stay out a bit because he is sensitive to the sun, due to the chemo. But, for the first time in 7 months, he got to go outside, and enjoy some sunshine!
On Sunday morning he woke up and said, "Bring me my chair, I'm not sitting in this bed all day!". Michelle and I had to laugh. We had not seen him that motivated before. So we started joking with him...asking if he was going to train to run a marathon or something. He said he's just sick of the hospital. If that's not an understatement, I don't know what is!
So, he got up and sat in his chair for nearly an hour. When he was tired, he got back in bed, but while he was working on getting back in, he said, "I'm going to get back in there in a little bit". I've watched the effort it takes for him to get up and in and out of the chair and the bed. I assure you it is the equivalent of me running a mile. It is work and it takes effort and concentration and endurance. After about a 20 minute rest, he asked for his chair again and got back in. This kid continues to amaze me!
On another note, he FINALLY gets to have something to drink. In the last 30 days, he's only had 3-4 days where he could drink something. On Saturday, he was allowed to have 8 oz a day. On Sunday, Michelle went to the regular daily rounds, ready to fight to get him 2 more ounces. :) She even bragged about all the work he was doing, sitting in his chair and going outside. She said she was going to hang a sign on his door that says "Will work for drinks!". The doctor realized this drink was very important to him. I saw this moment of compassion in him and he told the resident to go talk to surgery about being more liberal with his drinks. He said, "Let's give him his Coke!". Because I'm a total sap, I started crying after I thanked the doctor. I was just so overwhelmed because this drink IS important to him and I was so happy to hear that the doctors finally saw that! Let's hope surgery has as much compassion!
Finally, I received a text from Michelle later yesterday, after I had left. She let me know that Tyler walked much further than he had in the past. He probably doubled the length he has done in the past. He's motivated. He's strong and tenacious. I just love that kid! He inspires me to never ever give up. No matter how tired and sick he is...he's still fighting.
Thursday, May 2, 2013
Starting back up...
Tyler's treatments are starting back up. He started on 2 last night and they are working another one in today. Please pray for him that his numbers would not dive like they did last time.
They are also trying to keep him awake throughout the day. He's not so happy about that...he was quite grumpy with the docs about it yesterday. Still an 18 yr old kid with a bit of an attitude :)
We haven't talked much about the lymphnode on his neck. It has been really swollen over the last few weeks and it was causing his cheeks to swell. One day last week, it was so big that his eye was swollen shut. The good news is that Michelle reported to me this morning that the swelling is down and the node is measuring smaller. We'll take it! Let's pray it continues to shrink and that these treatments would shrink that abdominal tumor as well.
Continue to pray for wisdom for the doctors and nurses, comfort and emotional peace for Michelle and family, and protection and strength for Tyler. Thank you!
They are also trying to keep him awake throughout the day. He's not so happy about that...he was quite grumpy with the docs about it yesterday. Still an 18 yr old kid with a bit of an attitude :)
We haven't talked much about the lymphnode on his neck. It has been really swollen over the last few weeks and it was causing his cheeks to swell. One day last week, it was so big that his eye was swollen shut. The good news is that Michelle reported to me this morning that the swelling is down and the node is measuring smaller. We'll take it! Let's pray it continues to shrink and that these treatments would shrink that abdominal tumor as well.
Continue to pray for wisdom for the doctors and nurses, comfort and emotional peace for Michelle and family, and protection and strength for Tyler. Thank you!
Monday, April 29, 2013
Treatments on hold
Tyler's numbers dipped way too low over the weekend. So, for at least a week, they need to put his treatments on hold. Please pray that his numbers would come back up and that he would re-gain strength.
He still has not been able to have any food or drink. He is supposed to go for an upper GI and lower GI today to see if he can get that drink. They are worried with his numbers being so low that there may be risk for infection, and therefore delay this test. Delaying the test, delays the drink. So, we're hoping he can get the tests done, get his drink and not get an infection!
I don't want to be a downer, but I think maybe some of my posts create an inaccurate picture of the situation...like he's all cheery and running down the hallway during physical therapy. Tyler is so very sick. He can't get up without assistance. When he does his physical therapy it is work and he perseveres and shows his strength. But, he's mostly sleeping in his bed. I think he does spend some time awake, but they are moments that are few and far between, as far as I can tell. He's not crazy about having visitors and people seeing him like this. In fact, I think he gets sick of us being there sometimes. He has lost all privacy and probably a lot of dignity that comes along with that. A lot of times he'll put the blanket over his head if he wants to be left alone, or has a crazy headache. He'll sometimes apologize to his mom or to us...like we're inconvenienced by being there. This weighs on me because I want to respect him, but I also want him to know that he is worth our time and prayers, no matter the condition he is in!
I read this blog called Kisses from Katie. She's a young woman who has devoted herself to orphans and widows in Uganda. Her story is beautiful and her heart for our Savior is even more beautiful. She posted the other day about a woman that she is caring for that has AIDS. The post is here if you want to read the whole thing. So much of what she was saying stuck with me and put words to my feelings for Tyler and watching him in this time of great suffering. When I sit in the room and I sometimes have to fight tears back the entire time, while watching him lay in that bed. When I try to smile and laugh and even if Tyler doesn't even know I was there to see him that day..I'm reaching out to him in my heart to let him know he is worth it!
"It's His [Jesus'] message to us on the cross and it is His message to the woman with the issue of blood (Matthew 9:20-22) as He stoops down to look into her eyes, to speak to her, to meet her need: “You are worth it.” And I want it to be my message to these hurting that He brings into our lives: You, you are worth it. We are for you. He is for you." - Katie Davis
I don't think Tyler will ever read this blog, so he may never see these words. But, I pray that our visits with him, and Michelle, show them just how worth it they are to us, and to God! I hope my words are an encouragement to you all and that you realize how much we are blessed that you have joined us in prayers, gifts, cards, etc...to show Tyler that he is worth it!
He still has not been able to have any food or drink. He is supposed to go for an upper GI and lower GI today to see if he can get that drink. They are worried with his numbers being so low that there may be risk for infection, and therefore delay this test. Delaying the test, delays the drink. So, we're hoping he can get the tests done, get his drink and not get an infection!
I don't want to be a downer, but I think maybe some of my posts create an inaccurate picture of the situation...like he's all cheery and running down the hallway during physical therapy. Tyler is so very sick. He can't get up without assistance. When he does his physical therapy it is work and he perseveres and shows his strength. But, he's mostly sleeping in his bed. I think he does spend some time awake, but they are moments that are few and far between, as far as I can tell. He's not crazy about having visitors and people seeing him like this. In fact, I think he gets sick of us being there sometimes. He has lost all privacy and probably a lot of dignity that comes along with that. A lot of times he'll put the blanket over his head if he wants to be left alone, or has a crazy headache. He'll sometimes apologize to his mom or to us...like we're inconvenienced by being there. This weighs on me because I want to respect him, but I also want him to know that he is worth our time and prayers, no matter the condition he is in!
I read this blog called Kisses from Katie. She's a young woman who has devoted herself to orphans and widows in Uganda. Her story is beautiful and her heart for our Savior is even more beautiful. She posted the other day about a woman that she is caring for that has AIDS. The post is here if you want to read the whole thing. So much of what she was saying stuck with me and put words to my feelings for Tyler and watching him in this time of great suffering. When I sit in the room and I sometimes have to fight tears back the entire time, while watching him lay in that bed. When I try to smile and laugh and even if Tyler doesn't even know I was there to see him that day..I'm reaching out to him in my heart to let him know he is worth it!
"It's His [Jesus'] message to us on the cross and it is His message to the woman with the issue of blood (Matthew 9:20-22) as He stoops down to look into her eyes, to speak to her, to meet her need: “You are worth it.” And I want it to be my message to these hurting that He brings into our lives: You, you are worth it. We are for you. He is for you." - Katie Davis
I don't think Tyler will ever read this blog, so he may never see these words. But, I pray that our visits with him, and Michelle, show them just how worth it they are to us, and to God! I hope my words are an encouragement to you all and that you realize how much we are blessed that you have joined us in prayers, gifts, cards, etc...to show Tyler that he is worth it!
Tuesday, April 23, 2013
Praise Report
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!
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!
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!
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