Sorry for the lack of updates. It's hard to update when we're just waiting. Waiting for a miracle. Waiting for another 2nd opinion to come through. Just waiting.
These words below may sound familiar because I'm going to use the same
post I put on here back on Oct 7th. Tyler had just come out of surgery
and we were told that he was septic and it would be a miracle if he
pulled out of it. A miracle! That's what we got!! Tyler pulled out of
that dire situation he was in and we praise God for it.
Now we get to enjoy Tyler, even though he's in the hospital. I watched some NCAA basketball with him yesterday. We chatted about the tournament and the teams. He joked with my kids that they couldn't eat any of his cupcakes that were sitting there looking all delicious. When I told him his toenails were getting long and I wanted to cut them, he said, "don't worry about it...why kick when you can scratch?". His little sarcastic sense of humor shining through. He yelled at his mom about something and she told him she could still ground him. He replied, "what? to this bed?" Then she threatened to turn the tv off and he just rolled his eyes. His papa came in and tried to force him to eat, which just annoys Tyler to no end and so the typical bantering back and forth, between them, followed. These things aren't significant, but they are moments that we wouldn't have had with him if we hadn't received that miracle in October. Praise Jesus!
So, now I continue to struggle between keeping it positive and giving you the facts. As many of you know, UofM has told us that they "cannot cure his cancer". They keep telling us this. They keep trying to make that news sink in. But you know, it takes the heart a lot longer to get something that your head already knows. So, we wait. We wait for another hospital to look at his case. We wait on God for an answer and we plead with Him to give us another miracle for Tyler.
I don't want to put
this miracle request lightly. I know people throw that around all the
time. I'm not talking about some "god" or some harmony with the universe
or some good karma kind of "god". I'm talking about the kind of miracle
that can come from the one true God. The one that created us and knew
us from the time we were in our mother's womb. The one who sent his only
son, Jesus Christ, to die for our sins. The one that we can have
eternal life through if we confess our sins and believe in Him. You
broke God's law, you sinned, but Jesus paid the fine for us. And He was
broken and killed for us and the miracle is that He was RAISED FROM THE
DEAD by the power of the Holy Spirit! That's the power I'm trusting and
asking you to trust in right now.
So please, if you are
a believer in the one true God, by the grace of Jesus Christ, enter
into His throne room and pray for mercy and grace and healing and peace
over Tyler Joseph right now. We love this boy and we are believing in
the power of Jesus that will bring glory to His name through this, whatever His answer for Tyler might be.
Happy Easter week, everyone! Join me this week in celebrating the death and resurrection of Christ while we lift Tyler up in prayer!! Thank you!
Tyler - 17 year old fighting cancer!
Ready for Battle!
Monday, March 25, 2013
Friday, March 15, 2013
A smile
Sometimes it's hard to remember the last time I've seen Tyler smile. He's in so much pain and suffering right now, that the thought of it brings me to tears. Yesterday, though, Tyler got a visit from someone very special that brought a huge smile to his face. Everyone was so excited to see Tyler smiling that they were calling others in to see Tyler. And Tyler even let my mom take a picture of him with his visitor. He rarely let us take pictures of him when he was healthy and he absolutely refuses to let us take pictures of him now. But, this special visit made him so happy he said "I'm in heaven right now!"
That visitor...a dog! That's right...one of the staff at UofM heard how much Tyler likes dogs, so she got permission to bring hers in so that he could see the dog. Tyler woke up and sat up and pet the dog and smiled so much. I'm sure he misses his dog a ton. So now the staff has said that they are going to try and get permission to let his dog come in for some visits. They've been trying so hard to find something to make Tyler smile and after more than 5 months, we figured it out yesterday. Just hearing of his joy made me cry.
Please continue to pray for Tyler. He's in a lot of pain and having nausea again.
"Then they cried to the LORD in their trouble, and he saved them from their distress. He sent out his word and healed them; he rescued them from the grave." Psalm 107:19-20
Pray for Michelle too, no mama should have to watch her baby go through this kind of pain. She needs strength and peace in this suffering.
"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ." 2 Corinthians 1:3-5.
That visitor...a dog! That's right...one of the staff at UofM heard how much Tyler likes dogs, so she got permission to bring hers in so that he could see the dog. Tyler woke up and sat up and pet the dog and smiled so much. I'm sure he misses his dog a ton. So now the staff has said that they are going to try and get permission to let his dog come in for some visits. They've been trying so hard to find something to make Tyler smile and after more than 5 months, we figured it out yesterday. Just hearing of his joy made me cry.
Please continue to pray for Tyler. He's in a lot of pain and having nausea again.
"Then they cried to the LORD in their trouble, and he saved them from their distress. He sent out his word and healed them; he rescued them from the grave." Psalm 107:19-20
Pray for Michelle too, no mama should have to watch her baby go through this kind of pain. She needs strength and peace in this suffering.
"Praise be to the God and Father of our Lord Jesus Christ, the Father of compassion and the God of all comfort, who comforts us in all our troubles, so that we can comfort those in any trouble with the comfort we ourselves receive from God. For just as we share abundantly in the sufferings of Christ, so also our comfort abounds through Christ." 2 Corinthians 1:3-5.
Saturday, March 9, 2013
Aren't you all sweet...
Check all of this out. Michelle sits and reads every last one to Tyler. He sits and makes his smart comments. I've been sitting here cracking up at him. He has not lost that witty personality despite all of this.
Thank you for taking the time to share your thoughts and prayers with Tyler. The kids artwork is so darn cute. There are so many cards from people who have never met him and others that love him so dearly. He has a joy jar, Spartan decorations for his room, little boxing gloves to encourage him to keep fighting. Your love is felt in this room and we appreciate it. It couldn't have come on a better week!
Keep the cards coming!
Mott's Children's Hospital
Patient: Tyler Kurkierewicz
Floor 7, Room 32
1500 East Medical Center Drive
Ann Arbor, Michigan 48109
Thank you for taking the time to share your thoughts and prayers with Tyler. The kids artwork is so darn cute. There are so many cards from people who have never met him and others that love him so dearly. He has a joy jar, Spartan decorations for his room, little boxing gloves to encourage him to keep fighting. Your love is felt in this room and we appreciate it. It couldn't have come on a better week!
Keep the cards coming!
Mott's Children's Hospital
Patient: Tyler Kurkierewicz
Floor 7, Room 32
1500 East Medical Center Drive
Ann Arbor, Michigan 48109
Thursday, March 7, 2013
Inoperable
Inoperable. Nothing left that the doctors can do.
Yesterday's news was not what we wanted to hear. The kind of news that takes the last drop of hope and washes it clean away. A word that is really hard to accept. I think because accepting feels like giving up...and that's not something any of us are willing to do.
The surgical team came today to talk with Tyler and Michelle and confirm the news. 25 doctors looked at this case...no one will touch it. The only glimmer of hope they offered was to put him on the list to be a candidate for a full abdominal transplant. Sounds crazy and impossible to me. But to Tyler, this word offered back the hope he needed to get out of bed today and go down to physical therapy. If he's going to be a candidate, then he's gotta be strong, he said.
I love this kid! I love him with all my heart. I watched him pedal that bike this afternoon and try to stay awake and try to stay strong. I watched him wear himself out, but still walk over to his wheel chair instead of having it brought to him.
Never Ever Give Up, buddy. Never ever!!
Yesterday's news was not what we wanted to hear. The kind of news that takes the last drop of hope and washes it clean away. A word that is really hard to accept. I think because accepting feels like giving up...and that's not something any of us are willing to do.
The surgical team came today to talk with Tyler and Michelle and confirm the news. 25 doctors looked at this case...no one will touch it. The only glimmer of hope they offered was to put him on the list to be a candidate for a full abdominal transplant. Sounds crazy and impossible to me. But to Tyler, this word offered back the hope he needed to get out of bed today and go down to physical therapy. If he's going to be a candidate, then he's gotta be strong, he said.
I love this kid! I love him with all my heart. I watched him pedal that bike this afternoon and try to stay awake and try to stay strong. I watched him wear himself out, but still walk over to his wheel chair instead of having it brought to him.
Never Ever Give Up, buddy. Never ever!!
Sunday, March 3, 2013
Cancer Board - Wednesday
Tyler is free of infection and off of the antibiotics. All of his cancer/tumor markers are back up, which is not good. And he's in a lot of pain. He had a CT scan last week and his case will again go before the UofM Cancer Board on Wednesday.
The board includes the surgical team. We are praying that they will look favorably on his case and take a chance at the risky surgery to "de-bulk" some of the tumor. This is very risky and the surgeons have not been on board with this plan, so far, since he has been at UofM. So, we are praying that they will somehow find a way to do the surgery. At this time, it seems to be his only hope of continuing this fight.
Please pray that all of the doctors on his case will have wisdom and discernment this Wednesday. Also pray that Tyler remains infection free and gets relief from some of this pain. He usually only has a small window of days without infection. He must remain infection free to be considered for surgery. This is also a pretty emotional week for all of us, especially his mom. Please pray for comfort and peace during this anxious time.
Finally, thank you again for the outpouring of cards that are already starting to come through. If you haven't already, please take a couple of minutes to send him a card. The information can be found on the previous post, which includes his new room number.
The board includes the surgical team. We are praying that they will look favorably on his case and take a chance at the risky surgery to "de-bulk" some of the tumor. This is very risky and the surgeons have not been on board with this plan, so far, since he has been at UofM. So, we are praying that they will somehow find a way to do the surgery. At this time, it seems to be his only hope of continuing this fight.
Please pray that all of the doctors on his case will have wisdom and discernment this Wednesday. Also pray that Tyler remains infection free and gets relief from some of this pain. He usually only has a small window of days without infection. He must remain infection free to be considered for surgery. This is also a pretty emotional week for all of us, especially his mom. Please pray for comfort and peace during this anxious time.
Finally, thank you again for the outpouring of cards that are already starting to come through. If you haven't already, please take a couple of minutes to send him a card. The information can be found on the previous post, which includes his new room number.
Tuesday, February 26, 2013
Send some encouragement
You know those posts on Facebook where you see a kid fighting cancer and it asks something like "can I get 1,000 likes?".
I assure you, Tyler looks every bit as sick as those poor kids do. He doesn't want his picture taken like this, though, and he doesn't have Facebook.
Sooo....can I get 1,000 cards sent his way? It's a little more work than clicking a button on Facebook, but I think it will be worth it. Lofty goal, but one I think we can meet.
If you want to join...here's where to send a card:
Mott Children's Hospital
Patient: Tyler Kurkierewicz
Floor 7, Room 32
1500 East Medical Center Drive
Ann Arbor, Michigan 48109
It is extremely important that you include the patient’s exact room number and unit in the mailing address to ensure the mail gets to the right place. Also, please write "patient" in the lower left-hand corner to facilitate quick delivery of your letter or card.
Ty and Michelle could use your encouragement. Let's see if we can flood their room with our thoughts and prayers through cards!
I assure you, Tyler looks every bit as sick as those poor kids do. He doesn't want his picture taken like this, though, and he doesn't have Facebook.
Sooo....can I get 1,000 cards sent his way? It's a little more work than clicking a button on Facebook, but I think it will be worth it. Lofty goal, but one I think we can meet.
If you want to join...here's where to send a card:
Mott Children's Hospital
Patient: Tyler Kurkierewicz
Floor 7, Room 32
1500 East Medical Center Drive
Ann Arbor, Michigan 48109
It is extremely important that you include the patient’s exact room number and unit in the mailing address to ensure the mail gets to the right place. Also, please write "patient" in the lower left-hand corner to facilitate quick delivery of your letter or card.
Ty and Michelle could use your encouragement. Let's see if we can flood their room with our thoughts and prayers through cards!
Monday, February 18, 2013
Infections Setting In
The drains are doing their job. Tyler's color has turned back to somewhat normal after being so yellow last week, from the jaundice. Praise God! One of the common side effects with the surgical drainage tubes is infection. Tyler now has a fungal and bacterial infection. He is on some very strong, and often restricted, antibiotics to fight off these infections. The side effects of the medicine are flu like symptoms. So far he has not had those symptoms, but he is very tired. He is sleeping most of the day and night again.
Despite feeling this way, he did manage to make it down to Physical Therapy a couple of afternoons last week. This kid is a strong quiet warrior. I'm amazed at his ability to battle on through all of this. He has been suffering greatly, but continues to stay (silently) motivated to keep fighting and focused on getting out of this hospital!
Tyler won't be able to have surgery until infections are cleared up, organs are functioning well and numbers are staying in good places. Please make this your prayer over the next week. Please pray that Tyler will get healthy enough to be considered for the risky surgery of removing some of this tumor.
Also, my fellow prayer warriors, when this surgery is a possibility, it will be a major one. We should have about a 3 day warning before they take him in for the surgery. I'm asking those of you who believe in prayer and fasting to prepare your hearts and minds for that couple of days. I would like to ask you all to join me in fasting for Tyler in preparation for this major surgery. I will put that call out as soon as we have a scheduled date in place. It will hopefully be the end of Feb/early March.
Despite feeling this way, he did manage to make it down to Physical Therapy a couple of afternoons last week. This kid is a strong quiet warrior. I'm amazed at his ability to battle on through all of this. He has been suffering greatly, but continues to stay (silently) motivated to keep fighting and focused on getting out of this hospital!
Tyler won't be able to have surgery until infections are cleared up, organs are functioning well and numbers are staying in good places. Please make this your prayer over the next week. Please pray that Tyler will get healthy enough to be considered for the risky surgery of removing some of this tumor.
Also, my fellow prayer warriors, when this surgery is a possibility, it will be a major one. We should have about a 3 day warning before they take him in for the surgery. I'm asking those of you who believe in prayer and fasting to prepare your hearts and minds for that couple of days. I would like to ask you all to join me in fasting for Tyler in preparation for this major surgery. I will put that call out as soon as we have a scheduled date in place. It will hopefully be the end of Feb/early March.
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