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.
Tyler - 17 year old fighting cancer!
Ready for Battle!
Friday, April 12, 2013
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!
Wednesday, April 3, 2013
His Love
Easter was different this year...as was Tyler's birthday, Thanksgiving and Christmas. Why are the holidays harder days? Is it because of the tradition of gathering together reminds you even more of the ones that aren't with you? I don't know. My heart was hurting though. I was smiling and talking, but the tears were just beneath the surface. I know I wasn't the only one. We were missing Tyler and Michelle at our dinner table.
These are the faces that have been present since Tyler was born. Well, even before that, I guess. We're a tight knit family, if you haven't noticed. One that actually enjoys being around each other and looks forward to spending time together. We've been through some tough things, but never anything like this.
We've watched this boy since he was a baby...changed his diapers, played matchbox cars with him, took him to his football games, did his homework with him, took him on rounds at that Coney, got him his first job, became his work out partners, threw the football around the yard, bought him his first car, met his first girlfriend, celebrated his graduation last summer, gathered with him during his diagnosis this fall, sat in on family meetings with doctors...and now, we've all spent as much time as possible at his and Michelle's side in the hospital. Did you know Michelle and Tyler haven't spent a night alone since he has been in the hospital? Here's a glimpse into the schedule:
Sunday= Aunt Patty
Monday & Tuesday = Grandma Didi and Papa Bill
Wednesday = Aunt Cindy
Thursday = Aunt Juanita
Friday = Aunt Cheri
Saturday = Aunt Tammy
Backups = Aunt Jettie and Aunt Karen
That's pretty astounding, right?! We're thankful for supportive spouses and children while we put other members of the family first during these times. There are others that are regular visitors too...people who drive an hour or more to come see Michelle and Tyler...bring a meal or a treat, or, just sit and listen. We're thankful for them too. I would list them, but I'm bound to leave someone off and it's not my intention to hurt anyone's feelings.
So, to get to my point, on Easter, I sat down next to my Aunt Didi (Tyler's Grandma) and she asked how I was and I did the polite thing by saying "okay"...not a lie but not the whole truth because the truth would bring me to tears. Then I said, "and you?". She answered more honestly than me, she said, "I'm not okay. I'm horrible". As tears were streaming down both our faces she said, "I just keep reminding myself that God loves him more than I do! He loves all of us more than we know!" Sorrowful, but profound words.
His love is greater than ours. As much as we have given Tyler and Michelle, it is nothing in comparison to His love for us. That He would sacrifice His only Son to reconcile us to the Father. I hope our love has shown them a glimpse of what His love is for them.
I heard this song this morning and I can't think of any words more appropriate. I dedicate this song to Michelle, but also to the rest of us that are hurting right now - may we listen for Him and know and feel His love, even in this pain. You are not alone, Michelle. We are here, and more importantly, God is here and His love will see us through.
Another sleepless night
She's looking up and crying out
He's just a little child
Can you stop his hurting now
It's so quiet
But she hears in the silence
His arms are holding you
His love will see you through
When you smile and you laugh but you're fakin'
Cause you don't know how you're gonna make it
You feel so much pain
And you can't see your way
You're not alone
You're not alone
She's tryna' plan ahead
Unsure about the time left
Can't let these moments pass
Instead she'll treasure what she has
And when it's quiet
But she hears in the silence
His arms are holding you
His love will see you through
When you smile and you laugh but you're fakin'
Cause you don't know how you're gonna make it
You feel so much pain
And you can't see your way
You're not alone
You're not alone
Alone
His arms are holding you
His love will see you through
When you try not to cry but to take it
All the stress, and the hurt and heartache
You may feel pain
But not as great as His name
You're not alone
No you're not alone
These are the faces that have been present since Tyler was born. Well, even before that, I guess. We're a tight knit family, if you haven't noticed. One that actually enjoys being around each other and looks forward to spending time together. We've been through some tough things, but never anything like this.
We've watched this boy since he was a baby...changed his diapers, played matchbox cars with him, took him to his football games, did his homework with him, took him on rounds at that Coney, got him his first job, became his work out partners, threw the football around the yard, bought him his first car, met his first girlfriend, celebrated his graduation last summer, gathered with him during his diagnosis this fall, sat in on family meetings with doctors...and now, we've all spent as much time as possible at his and Michelle's side in the hospital. Did you know Michelle and Tyler haven't spent a night alone since he has been in the hospital? Here's a glimpse into the schedule:
Sunday= Aunt Patty
Monday & Tuesday = Grandma Didi and Papa Bill
Wednesday = Aunt Cindy
Thursday = Aunt Juanita
Friday = Aunt Cheri
Saturday = Aunt Tammy
Backups = Aunt Jettie and Aunt Karen
That's pretty astounding, right?! We're thankful for supportive spouses and children while we put other members of the family first during these times. There are others that are regular visitors too...people who drive an hour or more to come see Michelle and Tyler...bring a meal or a treat, or, just sit and listen. We're thankful for them too. I would list them, but I'm bound to leave someone off and it's not my intention to hurt anyone's feelings.
So, to get to my point, on Easter, I sat down next to my Aunt Didi (Tyler's Grandma) and she asked how I was and I did the polite thing by saying "okay"...not a lie but not the whole truth because the truth would bring me to tears. Then I said, "and you?". She answered more honestly than me, she said, "I'm not okay. I'm horrible". As tears were streaming down both our faces she said, "I just keep reminding myself that God loves him more than I do! He loves all of us more than we know!" Sorrowful, but profound words.
His love is greater than ours. As much as we have given Tyler and Michelle, it is nothing in comparison to His love for us. That He would sacrifice His only Son to reconcile us to the Father. I hope our love has shown them a glimpse of what His love is for them.
I heard this song this morning and I can't think of any words more appropriate. I dedicate this song to Michelle, but also to the rest of us that are hurting right now - may we listen for Him and know and feel His love, even in this pain. You are not alone, Michelle. We are here, and more importantly, God is here and His love will see us through.
Another sleepless night
She's looking up and crying out
He's just a little child
Can you stop his hurting now
It's so quiet
But she hears in the silence
His arms are holding you
His love will see you through
When you smile and you laugh but you're fakin'
Cause you don't know how you're gonna make it
You feel so much pain
And you can't see your way
You're not alone
You're not alone
She's tryna' plan ahead
Unsure about the time left
Can't let these moments pass
Instead she'll treasure what she has
And when it's quiet
But she hears in the silence
His arms are holding you
His love will see you through
When you smile and you laugh but you're fakin'
Cause you don't know how you're gonna make it
You feel so much pain
And you can't see your way
You're not alone
You're not alone
Alone
His arms are holding you
His love will see you through
When you try not to cry but to take it
All the stress, and the hurt and heartache
You may feel pain
But not as great as His name
You're not alone
No you're not alone
Tuesday, April 2, 2013
Pneumatosis
That's a fancy word for air in the bowels, and this is Tyler's latest painful medical situation. If they can't "fix" it, it can cause perforation of the bowels (like it did his stomach in October). He is currently on antibiotics and a drain was put in through his nose to relieve the pressure. He also cannot have anything to eat or drink.
He hasn't made any improvements since yesterday. His stomach is in a lot of pain and the soreness is getting worse.
From Isaiah 53:18 “I have seen his ways, but I will heal him;
I will lead him and restore comfort to him and to his mourners,
19 Creating the praise of the lips.
Peace, peace to him who is far and to him who is near,”
Says the Lord, “and I will heal him.”
Even while we are yet sinners - Christ brings salvation (healing) through his death and resurrection. We're praying for physical healing for Tyler, but also for comfort and peace for him and his mourners, which is why I love that verse.
Please join us in praying for healing, comfort and peace...not only for Tyler, but also for his mourners.
He hasn't made any improvements since yesterday. His stomach is in a lot of pain and the soreness is getting worse.
From Isaiah 53:18 “I have seen his ways, but I will heal him;
I will lead him and restore comfort to him and to his mourners,
19 Creating the praise of the lips.
Peace, peace to him who is far and to him who is near,”
Says the Lord, “and I will heal him.”
Even while we are yet sinners - Christ brings salvation (healing) through his death and resurrection. We're praying for physical healing for Tyler, but also for comfort and peace for him and his mourners, which is why I love that verse.
Please join us in praying for healing, comfort and peace...not only for Tyler, but also for his mourners.
Saturday, March 30, 2013
Tyler's Story
As most of you probably found through Facebook, another blogger, Roni, picked up Tyler's story and has written a couple of really nice posts about Tyler. We're blessed that she has chosen to get involved in Tyler's story and has never even met us. She is dedicating the month of April to Flat Tyler as her Light project. If you're logging in from a computer (and not your phone), you'll see a link to her blog on the right. Here is her latest post, a Letter to Michelle.
We're also seeing a huge response from the flat Tyler. I know a lot of you have been following his story and it's a fun way to get involved. I've seen a few of the pictures, so I thought I would include them here...and my kids are having a blast with it too, so I'll include theirs here.
We're also seeing a huge response from the flat Tyler. I know a lot of you have been following his story and it's a fun way to get involved. I've seen a few of the pictures, so I thought I would include them here...and my kids are having a blast with it too, so I'll include theirs here.
 |
| On a road trip for Spring Break - overnight stay in Nashville |
 |
| Go Wings! |
 |
| Rooting on his Spartans in Indy last night |
 |
| A morning ride with his Aunt Patty |
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| Getting buried on the beach in Florida |
 |
| Playing in the neighborhood with his cousin Alenna |
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| Dying Easter Eggs with Alenna and Blake |
 |
| Sneaking some popcorn and M&Ms |
Thursday, March 28, 2013
A message from Michelle
Since this journey started, I can't recall a time when Michelle has specifically asked me to post to the blog. Last night, she asked that I write a few things. First, thank you for all of the support she is receiving - the meals, the visits, the cards, the thoughts and prayers have not gone unnoticed!
She and Tim wanted to say a thank you to Kira and Nicole for coming up with the flat Tyler idea. We're getting a huge response on that and anything that can bring a smile to Tyler and Michelle right now is more than welcomed.
She also asked me to put a thank you to myself for the "awesome blog". I feel silly writing that, but she asked, so I will graciously put it on here and tell her "you're welcome". If I can speak for myself for a moment, I must admit when they asked me to start this thing back in September, I was completely naive to what it would take. I thought I would just be posting some medical updates for the family and friends, and come February, Tyler would be healthy again and life would go on just the same. I obviously took for granted how sick Tyler was and I didn't know I would find this to be such a challenge to share someone's story with my words. I often pray for a long time before posting because I want everything I do to glorify God. He has given me a spiritual gift of mercy (to be able to empathize with others with compassion, words and actions). I often call it a severe mercy because it hurts so bad at times, but I pray this blog glorifies Him and blesses Michelle and Tyler in their suffering. It certainly has taken the supernatural gifting of the Holy Spirit to find words to put on here for you all!
Finally, Michelle asked that I put a message out there for our readers that may have some connection to a surgeon or doctor or hospital. She is still desperately seeking someone else to look at Tyler's case and consider further treatment. If you know of someone, please email me at jetfields@yahoo.com and we can get them all of Tyler's medical records and whatever else they need to look at the case.
Thank you again and God bless!!
She and Tim wanted to say a thank you to Kira and Nicole for coming up with the flat Tyler idea. We're getting a huge response on that and anything that can bring a smile to Tyler and Michelle right now is more than welcomed.
She also asked me to put a thank you to myself for the "awesome blog". I feel silly writing that, but she asked, so I will graciously put it on here and tell her "you're welcome". If I can speak for myself for a moment, I must admit when they asked me to start this thing back in September, I was completely naive to what it would take. I thought I would just be posting some medical updates for the family and friends, and come February, Tyler would be healthy again and life would go on just the same. I obviously took for granted how sick Tyler was and I didn't know I would find this to be such a challenge to share someone's story with my words. I often pray for a long time before posting because I want everything I do to glorify God. He has given me a spiritual gift of mercy (to be able to empathize with others with compassion, words and actions). I often call it a severe mercy because it hurts so bad at times, but I pray this blog glorifies Him and blesses Michelle and Tyler in their suffering. It certainly has taken the supernatural gifting of the Holy Spirit to find words to put on here for you all!
Finally, Michelle asked that I put a message out there for our readers that may have some connection to a surgeon or doctor or hospital. She is still desperately seeking someone else to look at Tyler's case and consider further treatment. If you know of someone, please email me at jetfields@yahoo.com and we can get them all of Tyler's medical records and whatever else they need to look at the case.
Thank you again and God bless!!
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