Since a lot of you are following this blog and have never met him, I thought I would share a little story that shows you a bit of who Tyler is. He has never been a chit chatter. He's the quiet type. When he talks, it's usually straight and to the point. In his suffering, this has become much more evident.
Yesterday, the psychiatrist came in to talk with Tyler. Of course, he wasn't talking. She asked him to name 3 things he likes to do. He replied with, "Really?" as he looked himself over in his hospital bed. So, she told him if he named 3 things that he loved, she would leave his room. He said, "I'll give you one". She agreed.
He sat there for about 15 minutes, silent. She was probably growing impatient, but if you know this kid, this is no surprise. Finally, he said very matter a fact, "I love my mom". She asked for 2 more things and he said, "I told you I would give you one." And with that, she left him alone.
I loved hearing this story because it showcases his personality. It also gives tribute to his mamma that hasn't moved from his side and has been sleeping in a chair, in a hospital room, since Oct 1st.
Tyler - 17 year old fighting cancer!
Ready for Battle!
Friday, February 8, 2013
Wednesday, January 30, 2013
Suffering
Our boy is suffering. The chemo has just wiped the poor kid out. He's super tired and in lots of pain. He also now has pneumonia.
Just.Suffering.
That doesn't sound like a severe enough word for it and it's hard to adequately express the heart break we're all feeling because of it.
In addition to the symptoms that we can see, he's also having a lot of complications due to the tumor. The tumor is trying to take over his entire abdomen. Michelle says that you can even feel it on his side now, and see it coming through the skin. It's probably because of the weight loss, or it could be continuing to grow. It's putting too much pressure on his kidneys and liver, which can lead to failure of those organs. The surgeons are feeling that they are being forced to do something here. If they do nothing, he will only live for another 10-12 months. They are talking about putting some stints in for his liver and kidneys soon, to try and buy some time. They need to allow him to heal from the chemo and get healthier before they attempt any surgery. So, possibly in 4-6 weeks, they will attempt to remove part of the tumor to relieve some pressure from his major organs.
Tyler's case is rare, so the doctors are often changing plans and trying different things. But, this is the news as of today.
Please continue to pray for Tyler. We are truly still in need of a miracle here. I feel hopeless when we get news like this and I don't know what to pray for, so I'm encouraged by these words in Romans 8.
But hope that is seen is no hope at all. Who hopes for what they already have? 25 But if we hope for what we do not yet have, we wait for it patiently.
26 In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. 27 And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.
28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose. 29 For those God foreknew he also predestined to be conformed to the image of his Son, that he might be the firstborn among many brothers and sisters. 30 And those he predestined, he also called; those he called, he also justified; those he justified, he also glorified.
37 No, in all these things we are more than conquerors through him who loved us. 38 For I am convinced that neither death nor life, neither angels nor demons,[k] neither the present nor the future, nor any powers, 39 neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.
Just.Suffering.
That doesn't sound like a severe enough word for it and it's hard to adequately express the heart break we're all feeling because of it.
In addition to the symptoms that we can see, he's also having a lot of complications due to the tumor. The tumor is trying to take over his entire abdomen. Michelle says that you can even feel it on his side now, and see it coming through the skin. It's probably because of the weight loss, or it could be continuing to grow. It's putting too much pressure on his kidneys and liver, which can lead to failure of those organs. The surgeons are feeling that they are being forced to do something here. If they do nothing, he will only live for another 10-12 months. They are talking about putting some stints in for his liver and kidneys soon, to try and buy some time. They need to allow him to heal from the chemo and get healthier before they attempt any surgery. So, possibly in 4-6 weeks, they will attempt to remove part of the tumor to relieve some pressure from his major organs.
Tyler's case is rare, so the doctors are often changing plans and trying different things. But, this is the news as of today.
Please continue to pray for Tyler. We are truly still in need of a miracle here. I feel hopeless when we get news like this and I don't know what to pray for, so I'm encouraged by these words in Romans 8.
But hope that is seen is no hope at all. Who hopes for what they already have? 25 But if we hope for what we do not yet have, we wait for it patiently.
26 In the same way, the Spirit helps us in our weakness. We do not know what we ought to pray for, but the Spirit himself intercedes for us through wordless groans. 27 And he who searches our hearts knows the mind of the Spirit, because the Spirit intercedes for God’s people in accordance with the will of God.
28 And we know that in all things God works for the good of those who love him, who have been called according to his purpose. 29 For those God foreknew he also predestined to be conformed to the image of his Son, that he might be the firstborn among many brothers and sisters. 30 And those he predestined, he also called; those he called, he also justified; those he justified, he also glorified.
More Than Conquerors
31 What, then, shall we say in response to these things? If God is for us, who can be against us? 32 He who did not spare his own Son, but gave him up for us all—how will he not also, along with him, graciously give us all things? 33 Who will bring any charge against those whom God has chosen? It is God who justifies. 34 Who then is the one who condemns? No one. Christ Jesus who died—more than that, who was raised to life—is at the right hand of God and is also interceding for us. 35 Who shall separate us from the love of Christ? Shall trouble or hardship or persecution or famine or nakedness or danger or sword? 36 As it is written:Monday, January 28, 2013
The Brutal Effects of Chemo...
That nasty chemo is again taking its toll on Tyler. He was really sick throughout last week with nausea and vomiting. His numbers are really low. His white blood count was down to 100 yesterday (normal is 10,000). His platelet counts are really low too so they've had to give him something for that and he was getting blood too. This time he also got the mouth sores really bad and all the way down into his throat.
In addition to the normal side effects of the chemo, his stomach is not reacting well to all of this. He has a lot of pressure building up and has started to swell again. So, they are running CT scans, ultrasounds, etc. to try and determine what the cause is and what they should do about it.
All in all, he's pretty miserable and continues to need your prayers. We're just trying to take one day at a time here, but it's so tough to know that he's suffering so much!
In addition to the normal side effects of the chemo, his stomach is not reacting well to all of this. He has a lot of pressure building up and has started to swell again. So, they are running CT scans, ultrasounds, etc. to try and determine what the cause is and what they should do about it.
All in all, he's pretty miserable and continues to need your prayers. We're just trying to take one day at a time here, but it's so tough to know that he's suffering so much!
Tuesday, January 22, 2013
Monitoring Numbers...
Tyler is doing pretty good. He wrapped up chemo on Friday. The plan, for now, is to take a month off of chemo. They are going to monitor his numbers this week and next, and continue with his progress in physical therapy. If all goes well, they are hoping he will be able to go home for a week before starting the next round of chemo, which would have to be done in the hospital again.
Tyler is doing amazing with his physical therapy. On Sunday, I got to see him get out of bed and walk down the hall (with a walker). That was my first time seeing him out of bed since Oct 4th. I was overcome with joy and tears. It seems like small and slow progress to Tyler, but it is amazing to me. He has lost a lot of weight, nearly 40 lbs since this started, and a lot of muscle mass. So, he is weak, but is looking really good compared to the last few weeks. He's a bit grumpy, if I'm being honest. He's just sick of being in the hospital and being sick. Who can blame him? We're really hoping that he can get home for at least a week, and hoping that will help boost his morale a bit.
Please continue to pray that his numbers will stay at healthy levels, considering the chemo. And, that he'll be able to get home for a bit here in the coming weeks. Thanks for your continued prayers and support.
Tyler is doing amazing with his physical therapy. On Sunday, I got to see him get out of bed and walk down the hall (with a walker). That was my first time seeing him out of bed since Oct 4th. I was overcome with joy and tears. It seems like small and slow progress to Tyler, but it is amazing to me. He has lost a lot of weight, nearly 40 lbs since this started, and a lot of muscle mass. So, he is weak, but is looking really good compared to the last few weeks. He's a bit grumpy, if I'm being honest. He's just sick of being in the hospital and being sick. Who can blame him? We're really hoping that he can get home for at least a week, and hoping that will help boost his morale a bit.
Please continue to pray that his numbers will stay at healthy levels, considering the chemo. And, that he'll be able to get home for a bit here in the coming weeks. Thanks for your continued prayers and support.
Wednesday, January 16, 2013
Chemo underway
Tyler started chemo last night. He's very nauseous, of course. He still went down for physical therapy today though. This kid is a tough one! Thanks for your prayers!
Sunday, January 13, 2013
The Big C
Yeah...that big C word has reared its ugly head again. I guess we've all been waiting very anxiously for that word to be on the table again. Now that his stomach is closed and he's gaining strength...well...the cancer treatment is back in the discussions.
Thursday was a day of ups and downs and a lot of emotional frustration. First, they couldn't remove the trach because he still requires some oxygen at night. They knew that though! So why take him down to the ICU to remove it and then decide not to take it out??
Then, the oncologist FINALLY called a meeting with Michelle to show her the tumor. The picture was every bit as scary and every bit as big and dangerous looking as we had imagined. Like the doctors at Mt. Clemens had said, it is big and it's all the way up the back of his abdomen and touching all of his organs, as well as some very sensitive glands. This is the reason it cannot be removed surgically. It would be certain death if they were to hit one of these particular glands that it's sitting on.
But then, a glimmer of hope in the conversation...the tumor looked to be mature...non cancerous. Something he would just have to get used to living with...something his body would adjust to, but cancer free! Cancer free? Really? As Michelle left the meeting and tried to digest all that the doctors were saying she started to have questions. She was trying to reconcile this information with the fact that Tyler's pain is high and he has continued nausea and exhaustion just like he had back in September:
Then a different oncologist came in, just hours after the other was reassuring her that Tyler was cancer free, with this news...blood work is back and the cancer markers are all up...they are very concerned about his lymph node on his neck that has been swollen! He still has cancer and it's active! Ugh! So, the other C word...chemo therapy...is now needed immediately! Talk about a roller coaster ride of a day.
From hope back to devastation!
Needless to say, after all of the miscommunication and non thorough doctors, Michelle and Tyler are left frustrated and having a hard time trusting the doctors at all. But, they are at the mercy of their plans. So, Tyler has now been moved to the cancer floor and is starting chemo tomorrow. It will be the same chemo that he first started back on Oct 1st.
Here's how you can be praying for Tyler, pray that:
Thursday was a day of ups and downs and a lot of emotional frustration. First, they couldn't remove the trach because he still requires some oxygen at night. They knew that though! So why take him down to the ICU to remove it and then decide not to take it out??
Then, the oncologist FINALLY called a meeting with Michelle to show her the tumor. The picture was every bit as scary and every bit as big and dangerous looking as we had imagined. Like the doctors at Mt. Clemens had said, it is big and it's all the way up the back of his abdomen and touching all of his organs, as well as some very sensitive glands. This is the reason it cannot be removed surgically. It would be certain death if they were to hit one of these particular glands that it's sitting on.
But then, a glimmer of hope in the conversation...the tumor looked to be mature...non cancerous. Something he would just have to get used to living with...something his body would adjust to, but cancer free! Cancer free? Really? As Michelle left the meeting and tried to digest all that the doctors were saying she started to have questions. She was trying to reconcile this information with the fact that Tyler's pain is high and he has continued nausea and exhaustion just like he had back in September:
- What will his life be like with this tumor?
- What about the pain? Will he be on these methadone pain killers his whole life?
- Will this tumor ever be able to be removed or partially removed?
- Will his stomach work properly again or will they go home with all of these drains and tubes?
Then a different oncologist came in, just hours after the other was reassuring her that Tyler was cancer free, with this news...blood work is back and the cancer markers are all up...they are very concerned about his lymph node on his neck that has been swollen! He still has cancer and it's active! Ugh! So, the other C word...chemo therapy...is now needed immediately! Talk about a roller coaster ride of a day.
From hope back to devastation!
Needless to say, after all of the miscommunication and non thorough doctors, Michelle and Tyler are left frustrated and having a hard time trusting the doctors at all. But, they are at the mercy of their plans. So, Tyler has now been moved to the cancer floor and is starting chemo tomorrow. It will be the same chemo that he first started back on Oct 1st.
Here's how you can be praying for Tyler, pray that:
- The doctors will have wisdom and unity and will present thorough plans with clear communication
- Tyler will not have such a sever reaction to the chemo this time around (you can imagine he's scared after what happened the first time)
- Continued strength - Tyler needs physical strength to fight this brutal disease and the chemo's side effects
- Emotional strength for all of us that love this boy so much! The exhaustion is taking over, the emotions are high and we need renewed strength...especially his momma!
- That the chemo will do its job and shrink this tumor and kill this cancer - and in the meantime his major organs (currently concerned about his liver and kidneys) will be protected and not impacted by this nasty tumor!
- That Tyler will be completely healed and restored!!
Tuesday, January 8, 2013
Continued Progress
Tyler continues to make progress with his stomach recovery. He looks so much better!! I'm not sure if it's because he's moving and awake, or because some of his hair is growing back, but the difference is amazing!! He is working very hard. Most days, they have him busy with physical therapy from 8:00 - 5:00. So, he's pretty exhausted too.
Tonight he is heading back to the ICU to get his trach removed, another step in the right direction! He should only be in there for 24 hours while they monitor him after the removal.
Still no word on a treatment plan for the cancer or tumor. We are so happy at the progress he's making with this recovery though. Thank you for your continued support and prayers!
Tonight he is heading back to the ICU to get his trach removed, another step in the right direction! He should only be in there for 24 hours while they monitor him after the removal.
Still no word on a treatment plan for the cancer or tumor. We are so happy at the progress he's making with this recovery though. Thank you for your continued support and prayers!
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