Today marks 46 days of Tyler being in the hospital. He was diagnosed on Sept 24th. How crazy these last few weeks have been! We knew we had at least a 4 month battle on our hands, but none of us would have ever guessed it would have been this critical, this quickly. We're so happy with the progress that Tyler has made and we praise God for every good thing that is happening.
Michelle was told today not to get her hopes up on being home for Christmas. I told her to remind them that her entire family will be in the waiting room celebrating...and we'll probably bring our own Christmas tree. That should motivate them to get them out of there! But really, we're thankful for the care he is getting. The hospital has been so kind to us and Tyler is in good hands there.
Admittedly, there have been some moments of frustration between us loved ones these last few weeks. I mean, we're all at our exhaustion points of stress and emotions, so it's to be expected. Knowing we have a few more weeks or even months ahead, I'm encouraged by what Romans 12 says about love. I think our family has shown much of this to one another these last few weeks:
9 Love must be sincere. Hate what is evil; cling to what is good. 10 Be devoted to one another in brotherly love. Honor one another above yourselves. 11 Never be lacking in zeal, but keep your spiritual fervor, serving the Lord. 12 Be joyful in hope, patient in affliction, faithful in prayer. 13 Share with God’s people who are in need. Practice hospitality.
We will continue to be joyful in hope, patient in affliction and faithful in prayer for Tyler. Thank you for joining us in these prayers!
Tyler - 17 year old fighting cancer!
Ready for Battle!
Thursday, November 15, 2012
Tuesday, November 13, 2012
CT Results are in
The CT results show that the tumor has shrunk!!! We don't know by how much, but it has shrunk some. We're moving in the right direction at least. Praise the Lord!!
That's my short and sweet update for today :)
That's my short and sweet update for today :)
Monday, November 12, 2012
The latest
Sorry for the delay in updates...I had a crazy busy weekend, but here is the latest:
Tyler started throwing up last week. They are not sure if that's a reaction to chemo or part of the stomach infection, but they are watching that. He had some chest pains last night, but after an EKG this morning, it was determined that he was ok. He will be getting a CT scan tomorrow to see if the chemo was able to affect the tumor at all. His magnesium is low in his kidneys and they are not sure why. They are keeping an eye on that too. His white blood count is also really low and they don't want that to get any lower.
His friends came in for a visit yesterday, which was so great of them. It did, however, make him really sad and emotional afterwards. He cried for about a 1/2 hour after they left. So tough for everyone! On the bright side, he is allowed to have suckers now and that is very exciting. Sounds so silly, but it has been over a month since he was put on the ventilator and couldn't have anything until now.
Thank you all for your willingness to give blood directly to Tyler. We found out last week that doing the direct to donor blood donations is 3x the cost as taking from the general pool. So, we are going to hold off on any more donations. We would still like you to donate, if you are eligible, to help the overall blood supply. This will indirectly help Tyler, and others that are in need.
Please keep Tyler's physical and emotional needs in your prayers. We appreciate you!
Tyler started throwing up last week. They are not sure if that's a reaction to chemo or part of the stomach infection, but they are watching that. He had some chest pains last night, but after an EKG this morning, it was determined that he was ok. He will be getting a CT scan tomorrow to see if the chemo was able to affect the tumor at all. His magnesium is low in his kidneys and they are not sure why. They are keeping an eye on that too. His white blood count is also really low and they don't want that to get any lower.
His friends came in for a visit yesterday, which was so great of them. It did, however, make him really sad and emotional afterwards. He cried for about a 1/2 hour after they left. So tough for everyone! On the bright side, he is allowed to have suckers now and that is very exciting. Sounds so silly, but it has been over a month since he was put on the ventilator and couldn't have anything until now.
Thank you all for your willingness to give blood directly to Tyler. We found out last week that doing the direct to donor blood donations is 3x the cost as taking from the general pool. So, we are going to hold off on any more donations. We would still like you to donate, if you are eligible, to help the overall blood supply. This will indirectly help Tyler, and others that are in need.
Please keep Tyler's physical and emotional needs in your prayers. We appreciate you!
Friday, November 9, 2012
Physical Therapy and Trach Collar
Tyler is now on a trach collar and off of the ventilator! One less tube is a good thing. He doesn't like the sound the oxygen makes, but he'll get over that. He's not talking, but he's more alert and nodding and giving thumbs up. He also started 2-3 hours of bed physical therapy this week. He actually likes it a lot and it's going really well.
Please continue to pray for comfort and relief from pain for Tyler. Please also pray that the chemo will do its job in shrinking the tumor, but not have too many ill effects on his stomach, kidneys or any other major organ.
Please continue to pray for comfort and relief from pain for Tyler. Please also pray that the chemo will do its job in shrinking the tumor, but not have too many ill effects on his stomach, kidneys or any other major organ.
All we have is gratitude
It's so hard to put into words the emotions our family is feeling about the event last night. It was completely overwhelming to see blessings flowing endlessly throughout the day from all of you. And all we have is gratitude to offer you!
I walked into the hall on Thursday afternoon and was struck immediately when I saw that the entire building had already been transformed from volunteers over the last day or 2. Tables and chairs were set. The food stations were ready. There was a box of donated t-shirts for all of our family that read "Team Tyler". And I cried. There were tons of volunteers already in motion. I took my son back to my parents for a brief nap and when I returned an hour or so later, the room had a busier buzz and now everyone had their blue t-shirts on...and I cried.
Our little ones - Lance, Billy, Lydia, Alenna and Blake had their tables set up. Duct tape purses, hot chocolate, bracelets that read "Keep Fighting Tyler", "Stay Strong Tyler", "Hope", etc lined the tables. And I cried.
ALL of the food was donated from various people...including salad, veggies, meatballs, pasta, sauce, desserts, ice cream, etc. There were 75+ baskets and auction items donated to the event to raise funds. Looking at all of them so neatly organized and given so freely made me...well, you guessed it...cry! Then there were piles of people coming in. I mean hundreds of people! We knew many of them, but certainly not all. These pictures don't do it justice because this was only the upstairs. There were more downstairs, I just didn't find a moment to snap a picture. People coming from everywhere. Family, close friends, friends of friends, people we've met in the ICU waiting room, people that didn't know us at all but have been reading the blog. It was so unbelievably overwhelming and we were all emotional about it.
When the evening started to wind down, our family sat around and enjoyed the feeling. We were so full of gratitude and for the first time in the last few weeks...we laughed and smiled and joked and stuck around and just hung out talking about how much love we had felt that night...outside of a hospital waiting room. It was a nice release. Again, I didn't have the opportunity to take too many pictures while we were sitting around, but here are just a couple.
I want to avoid writing specific names because there was so much generosity poured out over this event and I would be bound to leave someone off the list. But, I do feel we need a shout out for some that worked so hard to pull this thing off. First, Tyler's Papa Bill did an amazing job at coming up with the idea, promoting and selling tickets, and getting monetary and auction donations. And, Tyler's Uncle Don (who we've always referred to as the "social director" of the family) got auction items donated, organized the whole place, cooked the food and kept it coming (with a team of people). The entire family and some really close friends, worked so hard organizing, setting up, getting baskets together, cooking and running the show. We had so many compliments on how smooth things went and how organized it was even though there were hundreds of people around. We never even ran out of food for 400+ people. We cooked and went through every bit of 60 lbs of pasta! Whoa!
We thank you all from the bottom of our hearts for your prayers, time, effort, energy and donations. We are so very blessed. We raised a lot of money that will directly benefit Michelle and Tyler. Of course, Michelle didn't leave her son's side even for this event. I know she is grateful that you have made it possible for her to continue sitting at her son's bedside and not worry about bills or finding another job while this is going on with Tyler. That security is something that is irreplaceable. Thank you from Michelle, Tyler and the rest of us!
Much love (and in tears as I end this post),
Jettie
 |
| Tyler's Aunt Cheri and Aunt Patty manning the front table |
 |
| Alenna and Blake getting set up |
Our little ones - Lance, Billy, Lydia, Alenna and Blake had their tables set up. Duct tape purses, hot chocolate, bracelets that read "Keep Fighting Tyler", "Stay Strong Tyler", "Hope", etc lined the tables. And I cried.
ALL of the food was donated from various people...including salad, veggies, meatballs, pasta, sauce, desserts, ice cream, etc. There were 75+ baskets and auction items donated to the event to raise funds. Looking at all of them so neatly organized and given so freely made me...well, you guessed it...cry! Then there were piles of people coming in. I mean hundreds of people! We knew many of them, but certainly not all. These pictures don't do it justice because this was only the upstairs. There were more downstairs, I just didn't find a moment to snap a picture. People coming from everywhere. Family, close friends, friends of friends, people we've met in the ICU waiting room, people that didn't know us at all but have been reading the blog. It was so unbelievably overwhelming and we were all emotional about it.
When the evening started to wind down, our family sat around and enjoyed the feeling. We were so full of gratitude and for the first time in the last few weeks...we laughed and smiled and joked and stuck around and just hung out talking about how much love we had felt that night...outside of a hospital waiting room. It was a nice release. Again, I didn't have the opportunity to take too many pictures while we were sitting around, but here are just a couple.
I want to avoid writing specific names because there was so much generosity poured out over this event and I would be bound to leave someone off the list. But, I do feel we need a shout out for some that worked so hard to pull this thing off. First, Tyler's Papa Bill did an amazing job at coming up with the idea, promoting and selling tickets, and getting monetary and auction donations. And, Tyler's Uncle Don (who we've always referred to as the "social director" of the family) got auction items donated, organized the whole place, cooked the food and kept it coming (with a team of people). The entire family and some really close friends, worked so hard organizing, setting up, getting baskets together, cooking and running the show. We had so many compliments on how smooth things went and how organized it was even though there were hundreds of people around. We never even ran out of food for 400+ people. We cooked and went through every bit of 60 lbs of pasta! Whoa!
We thank you all from the bottom of our hearts for your prayers, time, effort, energy and donations. We are so very blessed. We raised a lot of money that will directly benefit Michelle and Tyler. Of course, Michelle didn't leave her son's side even for this event. I know she is grateful that you have made it possible for her to continue sitting at her son's bedside and not worry about bills or finding another job while this is going on with Tyler. That security is something that is irreplaceable. Thank you from Michelle, Tyler and the rest of us!
Much love (and in tears as I end this post),
Jettie
Tuesday, November 6, 2012
Another Rough Night
Tyler had another rough night. We think they may be trying to wean him off of too many medications at once. So, they are still trying to figure out a good regimen for his pain and anxiety. His heart rate reached 170 and he was running a 103 fever.
On the positive side, they are talking about doing the tracheotomy collar tomorrow and start some bed physical therapy. His kidneys are still functioning well too.
Again, we hope to see you all at the fundraiser Thursday. We have some really great donations pouring in that we'll be giving away as raffles and auction items. If you can't make the dinner, please consider donating on line by clicking here: http://www.gofundme.com/1drbvk.
On the positive side, they are talking about doing the tracheotomy collar tomorrow and start some bed physical therapy. His kidneys are still functioning well too.
Again, we hope to see you all at the fundraiser Thursday. We have some really great donations pouring in that we'll be giving away as raffles and auction items. If you can't make the dinner, please consider donating on line by clicking here: http://www.gofundme.com/1drbvk.
Sunday, November 4, 2012
Some Progress
Tyler continues to make progress. He has been breathing on his own since Thursday! They are talking about removing the ventilator soon. He will still have the trach, but he would be able to talk if he covers the air hole. His blood pressure is good and he hasn't been running a fever. He has also tolerated the chemo well so far. We are all happy his kidneys are still functioning well.
Today will be the 5th day of chemo in a row. Next week will be more telling of how he tolerates all of these chemo treatments from this week.
We are still praying that the infection will be completely cleared and the swelling will continue to go down. They've also finally got his pain and anxiety somewhat under control. We're praying that his new regimen will keep him comfortable, especially when the chemo effects kick in.
Thank you all for your continued prayers. We praise God for every victory, although they seem small at times.
We are hoping to see you all on Thursday at the fundraiser.
Today will be the 5th day of chemo in a row. Next week will be more telling of how he tolerates all of these chemo treatments from this week.
We are still praying that the infection will be completely cleared and the swelling will continue to go down. They've also finally got his pain and anxiety somewhat under control. We're praying that his new regimen will keep him comfortable, especially when the chemo effects kick in.
Thank you all for your continued prayers. We praise God for every victory, although they seem small at times.
We are hoping to see you all on Thursday at the fundraiser.
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