Tyler - 17 year old fighting cancer!

Tyler - 17 year old fighting cancer!
Ready for Battle!

Sunday, December 30, 2012

The last stomach surgery!

Well Friday's surgery went well. They were able to put the mesh in as they had planned. Baring any emergencies or complications, that is his last planned stomach surgery. Now the rest of the healing begins.

The doctors weren't lying about the painful recovery. Tyler is in a lot of pain right now. He's saying he's at level 9 even with all of the pain meds they are giving him!! Last night when I was with him, he was refusing to get his trach suctioned because he knew it would cause him to cough, which would hurt his stomach. And when the nurse told him he had to get a bath, a look of pain and anguish came over his face! The poor kid! He made it through and got suctioned before going to bed, though.

He had a bit of throwing up in the middle of the night and a lot of coughing, which didn't make for a good full night's sleep. But he was resting when I saw him this morning.

If the recovery goes as planned, we are looking at February before he gets to go home. Of course, that is only the stomach healing and not the cancer. Still no plan has been presented for the cancer.

Thank you for continuing to pray for Tyler. Looking back on these 3 months, I can say it is a miracle that he has made it this far! We are continuing to put our trust in the One true God! May His will be done in Tyler's life!!

Thursday, December 27, 2012

A Pretty Rough Week

Tyler has had a rough week. He's pretty much been sleeping since his surgery last Thursday. He wasn't breathing deeply enough and his carbon dioxide levels were too high. So, they put him back on the cpap (not the ventilator, but the step down that helps wean him off of the ventilator.). Michelle knew something wasn't right the other night, with his breathing, and alerted the doctors and the nurses. They caught it in time (way to go mom!) to prevent him from having to go back on the ventilator, but he's still not happy about being on this thing.

He had another surgery Christmas morning. They cinched his stomach again and drained some fluid from his lungs. They feel that they cannot pull his stomach together any more. So, tomorrow, they are planning to put a mesh in his stomach. They said it's a very painful surgery and so he will be put under and have an epidural for the pain. The next 5-7 days after the surgery will bring him a lot of pain as well.

I wish I could be bringing you more uplifting news, but this is the reality of it for now. Tyler has now been in the ICU for nearly 3 months, at UofM for 4 of those weeks already. This battle is much longer and much harder than any of us had anticipated that it would be, but we're continuing to take 1 day at a time.

Please pray for a successful surgery tomorrow and for Tyler's pain levels as he heals. Also continue to pray that he will be a favorable candidate for one of these cancer trials, as he will be embarking on that battle after his stomach heals.

Saturday, December 22, 2012

Some News from the Oncologist

Finally, after so many weeks with nothing, we do have some news from the surgical oncologist today. It's not the news we were hoping for, however. The surgeon has met with the adult cancer surgeons and the pediatric surgeons. The tumor is not operable at this point. They said it is like cement on all of his organs.

They are trying to get him into a trial. They need to do some more biopsies in order to see if he can be a candidate for the trial they have in mind. If that doesn't work, they will try another one.

Please pray for Tyler. I know you are already, but today's news is so disheartening. We are all emotionally and physically drained. Tyler (and his mom...and the rest of us) need renewed strength and hope. Please pray that he will be a match for the right trial. Please pray that they will find a breakthrough for him. Our family is continually grateful for your thoughts and prayers these last few months.

Monday, December 17, 2012

No big changes

Sorry for the lack of updates. There haven't been many big changes going on. Tyler is still in the PICU. He's still making progress in terms of his stomach closing. He has about 10 centimeters to go still until it is closed. So, he goes to the O.R. every couple of days and gets "cinched" together a little more. You can imagine it's pretty painful. So, he has his good days and his bad days with the pain.

They are also continuing to push him on his physical therapy. He sat up for a couple of hours in a wheelchair last week. Although painful and exhausting, he did it.

He has been running a fever and been throwing up a bit too. They think that may be due to clamping his G-tube (drain from his stomach). They are trying to get his stomach back to working on its own, so this is part of the painful process.

We do have a praise report. Michelle received a letter that his insurance coverage will continue until at least November of next year. We are so grateful! I cannot even imagine what his hospital bills would look like at this point. I'm sure we're approaching $1million, if he hasn't already gone over that amount.

Another praise report has to be the Ronald McDonald house. What a huge blessing they have been to the family. They have made a room available for us every night since he has been there. Local charities bring food in every night for all of the 29 families that are there. And, since they know we'll be there celebrating for Christmas, they have already offered us up one of the common areas to reserve for our family. So amazing! Now if only we can wheel Tyler over there to join us. I doubt it, but I can be hopeful until then!

I can't thank you enough for your prayers. Tyler is so blessed by them too! When his grandma mentioned to him that she was praying for him, he jokingly said back to her, "You need to get people praying for you, I have tons of people praying for me already!" So, thanks again.

We are still overwhelmed by your care, concern and generosity. But, we still need your prayers too. Thank you for continuing to keep Tyler in your prayers. We're still believing in our Healer for a full recovery and a plan to take care of that nasty cancer tumor!

Tuesday, December 11, 2012

Praying for a plan

Tyler had another procedure yesterday where they wash his belly out and do the cinching together of his stomach. He's in some pain, but otherwise everything is the same.

The surgeons are suppose to meet tonight about his case and then tomorrow they are suppose to review his cancer case again with the cancer board. We're praying that a plan will be revealed for his cancer treatment. Please join us in praying for some good news and a clear plan for Tyler's case.

Saturday, December 8, 2012

Progress Report

You have probably already heard that Tyler got his slurpee on Thursday! Tyler is looking pretty good today. He was talking quite a bit last night with me and his papa. That was the first I've heard him talk with his trach collar. It was great!

He's making good progress with his stomach. The swelling is way down and he's starting to sit up more. His physical therapy is going well. He even stood up yesterday and took a couple of side steps. He's very weak, but definitely showing progress.

The surgeon came in this morning and said he's close to getting out of the ICU. He just needs to make some more progress with his trach and his food/diet.

In terms of the cancer, she also explained that UofM is one of few hospitals that takes a multi disciplinary approach. They have a team of 30 doctors from all areas (surgeons, pathologist, radiologists, oncologists, etc.) that meet on Wednesdays to review the cancer cases. They reviewed Tyler's case last Wednesday. Because his case is rare they did not come up with a plan yet. The team wanted more information and time. So we do not have any answers on any of that yet. Still waiting!

Thursday, December 6, 2012

Food Coming Soon!

Tyler passed his swallowing evaluation this morning - so he will be able to eat real food soon! We're happy about this progress. Poor kid hasn't had food since October 1st. And now he's one day closer to that Slushy!!!

That's our piece of good news today.

We're still praying for continued progress and strength for Tyler. The biopsy this week was really painful and took a lot out of Tyler. We still haven't been presented with a plan for the cancer yet. You know, we've been told that a case like Tyler's is only seen once every 5 years. It's a really rare tumor. Please pray for wisdom for these doctors.

I read this today and loved it, so I'll share it with you. Praying that these things remain true for Tyler and this family through this awful season of our lives.

Tuesday, December 4, 2012

Another Surgery in the Books

Tyler was in surgery again for most of the day yesterday. If my count is correct, I think that makes 10 surgeries now. Yesterday they did another biopsy of the tumor and pulled his stomach a little closer together. Hopefully the biopsy will give them the info they need to come up with a plan for the cancer.

Today Tyler will have another procedure done on his trach. I'm not really sure the details of that, but I think that's the only thing planned for today.

They have assigned him a team of specialist for his long term pain management. We're hoping they can get him comfortable and be able to manage this for the long term, since he'll likely be here for another month or more.

As always, thank you for your continued prayers for Tyler.

Sunday, December 2, 2012

Procedure after Procedure

That's pretty much what Tyler's weekend has been like. He's had a pick line put in, x-rays, blood work, more stitching, more drains, etc. He's not really a happy camper. His pain is still high, but they are managing it better now. He was awake and watching football most of the afternoon today. He seemed real crabby, not wanting to communicate or anything. I know he's not loving it here...or maybe it was because he was watching the Lions?

At any rate, it seems everyone is settling in here and beginning to trust the doctors. We're still waiting to hear a plan on the cancer. He will have another surgery tomorrow to do a biopsy of the tumor. Hopefully that will give them enough information to make some decisions on treatment.

It's going to be a long treatment and recovery here. It's nice to be at a hospital that puts the patients and their family first. The accommodations are amazing. My kids love going there...it's like a field trip for them. Today, they were in a day camp where they did some crafts, played at the indoor play center and had a snack. This allowed me to hang out in Tyler's room uninterrupted for a couple of hours. The Ronald McDonald house is just a short walk away and that allows for someone to stay the night with Michelle so she doesn't get too lonely in the evenings and mornings. I can see she is loving that.

Here are some photos...
This was from the other hospital...a celebration day for Tyler :)
I bet Michelle doesn't miss these - parking tickets because they thought her car was an employee's vehicle
My kiddos meeting R2D2 at the Star Wars Bingo they had for patients and family members at UofM

Dennis doing the chores at the Ronald McDonald House

The grown ups having a little fun in the kids indoor play area (I nearly threw up!)

Friday, November 30, 2012

Better day!

Thank you for your prayers today. Michelle had a much better day! She met the oncologist team. They need another biopsy before they can figure out the plan. Michelle also got a room at the Ronald McDonald house. So a family member can stay with her and she doesn't have to live out of her car. She's back in the zone!

Out of the Zone

Well, I've referenced Michelle's "zone" a few times on here. Yesterday, she finally reached the breaking of the zone. They took Tyler down for surgery around 12:30 and he did not get out until almost 5:30. During that time, she received NO updates on what they were doing, how Tyler was, etc. It was extremely stressful for her.

They also reduced nearly all of his pain medication in half. You may remember from my earlier posts that Tyler has a very high pain tolerance and it took days to get his regimen to where it needed to be to keep him comfortable. Now that they are messing with that, Tyler is in A LOT of pain again, especially after yesterday's surgery...so much so that it brought his rock solid mamma to tears last night!

As for the surgery, they have decided to make closing his stomach their top priority. Warning: this will be the most non-medical explanation of what they did...they removed the wound vac and put something else in its place. It's a clear thing that they sew in the part of the stomach that is open. It will help to pull the skin together. They will slowly pull that closer and closer (through multiple surgeries) until they can close his stomach (or something like that). 

They aren't even talking about the cancer and Michelle hasn't even met an oncologist yet. This is not the path she was hoping for here. We thought they took the case because they thought they could do something with the tumor. The surgeon told her yesterday that they took the case so that they could close his stomach. She doesn't know where they stand with the cancer treatment. The lack of communication is very frustrating!!

We're sure they have a plan, and it doesn't look to be the plan we had hoped for, but we're still trying to trust these doctors for Tyler.

On a good note, Tyler was able to get some water and applesauce today! The first food in over 2 months!! They are going to work on getting him to sit up, even though it's painful with his stomach. This will then allow him to make some further progression towards eating food and getting that slurpee that he wants so badly!!

As you can see, there is a lot to pray for here. We need doctors that will communicate the full plan. We need Michelle and Tyler to feel comfortable here and be able to trust these doctors. We need Tyler's pain to be under control. We need to hear a plan for the cancer treatment. We need for Michelle and Tyler to have renewed strength to keep fighting and not grow weary and hopeless.

Love you all! Thank you for partnering with us on this journey!

Thursday, November 29, 2012


There is always some apprehension to the unknown. Change is difficult. That is sort of what is going on for Michelle and Tyler right now. They went from a little hospital where Tyler was one of the most severe cases and the youngest patient...to a giant hospital, full of severe cases, where Tyler is the oldest on the PICU floor. They went from 1 or 2 doctors coming in to talk to them, to teams of doctors coming in constantly. They went from being 10 minutes away from most family members to being an hour away from most family members. It feels lonely here for them. This has set some fear in for Tyler and more anxiety about his condition. He just wants to be home!

The last day and half has been full of running tests, which is frustrating for Tyler and Michelle since they've already been through this for the last 2 months.They know this hospital is excellent and these doctors are highly recommended, but they are ready for a plan to be presented and it's hard to wait. We're trusting that this is his best chance at beating this cancer, but change is still difficult.

I'm not trying to grumble or complain, but just let you know how they are feeling, so you can pray more specifically for them.

There are many positives here too, and we're trying to focus on that. Of course, knowing that he's at this world renown hospital is reassuring. The staff and nurses have been great so far. They are more than accommodating for Michelle and the family. Tyler has a nice big screen tv in his room. Michelle has access to a shower. The family waiting room is welcoming with shelves for storing your food, refrigerators, toys for kids to play with, tables for the families to eat at, etc. It makes it a bit easier to make this place our home away from home, for the next few weeks.

The plan for today's surgery is to do a biopsy of the tumor and to clean out his wound vac and replace some tubes for his drain and feeding tube. We're not sure about a time yet, but will let you know how everything goes later today. 

We are continuing to trust in the Lord Almighty and keep our hope in Him. He does not grow weary like we do. My friend gave me this passage from Isaiah 40 that she has been praying for Tyler and Michelle. We're praying for renewed strength to endure the coming weeks:

Why do you say, O Jacob,
    and complain, O Israel,
“My way is hidden from the Lord;
    my cause is disregarded by my God”?
28 Do you not know?
    Have you not heard?
The Lord is the everlasting God,
    the Creator of the ends of the earth.
He will not grow tired or weary,
    and his understanding no one can fathom.
29 He gives strength to the weary
    and increases the power of the weak.
30 Even youths grow tired and weary,
    and young men stumble and fall;
31 but those who hope in the Lord
    will renew their strength.
They will soar on wings like eagles;
    they will run and not grow weary,
    they will walk and not be faint.

Wednesday, November 28, 2012

Moved the Surgery to Tomorrow

They changed their plan and are going to do the surgery tomorrow. They are running a bunch of tests and CT scans and the like instead today. Once we know more about what tomorrow's surgery will be, we'll let you all know.

Surgery this morning

Michelle and Ty didn't get much sleep last night with the transfer and the new doctors and paperwork. Michelle is pretty exhausted! They are trying to settle into their new room and such.

They are going to take Ty in for surgery this morning. They want to clean his stomach up, fix his feeding tube and see what the plan would be to close his stomach. They aren't doing anything with the cancer in today's surgery.

Thank you for your steadfast prayers for Tyler and our family! We know he's in good hands at UofM. We are thankful for the answers to prayers that we've already seen. Keep them coming!!

Tuesday, November 27, 2012

Tyler is now at UofM

Just got word that Tyler arrived safely. They ended up taking him by ambulance. He is being cared for at the ICU in the children's hospital. Michelle is able to stay in his room with him, which I know is an answer to her prayers!!

Thank you for your continued prayers for Tyler. We know he is in good hands and
are praying that these doctors will have great wisdom in treating him!

Off to UofM

Just got an update that UofM has accepted Tyler! Praise God! They are working out the transfer now and he should be moved tonight or tomorrow, likely via helicopter. I'll let you know when we have more details. Please pray for a safe transfer!

No word yet...

We're still waiting to hear from Dr. Saha. Rumor has it he has reviewed the file, but was on vacation last week. He may want to come and meet Tyler and see the case for himself before we find anything out. That's all we know right now.

Tyler continues to be nauseous and running a fever. So, it would seem he has some sort of infection or that he's having symptoms related to the stomach recovery or the cancer. Please pray for Tyler that this infection would subside and he would remain stable.

Please pray for Michelle that she would have continued strength, wisdom and endurance. She is also fighting the fight for her kid - keeping his best interests and health at the forefront of her decisions for him...all while never leaving that hospital room. I can't imagine the difficulty in watching your child go through this...laying in a bed and fighting for his life for nearly 60 days now. She'll kill me for writing this, I'm sure. But, I love her and see her pain (even when she's still in her "zone") and she needs our prayers too!

Saturday, November 24, 2012

Still waiting

Tyler has had a rough weekend. He's throwing up quite a bit. Not sure if it's due to the cancer, the chemo or the stomach. So he's been sleeping quite a bit and not feeling well.

Still waiting to hear from the doctors. We didn't really expect to hear much with the holiday weekend upon us. We're hoping for some news on Monday regarding the surgery and a transfer.

Tuesday, November 20, 2012


Waiting has to be the worst part! The surgeon and the oncologist spent a long time tonight with the family. They explained so very thoroughly what Tyler's current situation is and what they are trying to do next.

As they explained yesterday, they want to put the breaks on the chemo. They clarified that they feel this is a window of opportunity to try and surgically remove the tumor. Tyler is in better shape with the stomach infection. And as they've said, the cancer wasn't even on their radar until that stomach healed more. Now that he is healing from that, they feel that more chemo could risk an infection in the stomach again and that would be steps backwards. With this tera toma cancer, they would try and shrink it and do surgery anyway. So, they are feeling this might be that opportunity and then they could go back in, close the stomach and then do more chemo. Closing his stomach in and of itself is a very major surgery. So they are trying to do what is best for Tyler at every step of this process. (At least this is what I was gathering from their explanation. I hope I understood all of that correctly.)

So...now the waiting game. They are not surgical specialist in this kind of cancer, but they know people who are. Their first phone call was to Dr. Saha in Flint tonight. We are waiting for him to review the case and see if he is willing to do the surgery or make recommendations on others that might consider it. He is a surgical oncologist and has experience with these types of tumors. We're hoping and praying that he will take Tyler. If he will not, we're praying he knows of another specialist that he would recommend.

Please pray for Tyler's doctors. Please pray that they make wise decisions. Please pray that Dr. Saha will consider Tyler and be willing to perform the surgery. Please also pray for peace for this family as we await the news on whether someone will take Tyler's case.

Philippians 4:4-8 Rejoice in the Lord always. I will say it again: Rejoice! Let your gentleness be evident to all. The Lord is near.  Do not be anxious about anything, but in every situation, by prayer and petition, with thanksgiving, present your requests to God.  And the peace of God, which transcends all understanding, will guard your hearts and your minds in Christ Jesus. Finally, brothers and sisters, whatever is true, whatever is noble, whatever is right, whatever is pure, whatever is lovely, whatever is admirable—if anything is excellent or praiseworthy—think about such things.

Monday, November 19, 2012

Good News and Devasting News

I've opened up this page multiple times today and can't find the words to put down. Usually it's not so difficult for me, but today I'm actually nervous as I type. It's hard to share the tough news. I tried to be cautious about the good news along the way because my heart continued to tell me that this cancer was going to rear its ugly head again. And it has.

I'm going to start with some news from the weekend that I'm rejoicing in. I'm sure you can tell from my posts that I believe Jesus is the only way, the truth and the life. So, one of my prayers throughout this crazy time was that Tyler would come to know his Savior, Jesus Christ through this. I've been praying fervently that God would allow him enough time to come to know Him. That God would reveal Himself to Tyler in the midst of the sedation. I had felt a real urgency during the first few weeks, along with some of the other Christians in my family, to share the gospel with him, even in the state he's in. We, as well as many chaplains and visiting pastors, spent hours in his room praying, proclaiming the Word over him, talking to him about Jesus and sharing the gospel with others that were at his bedside. Tyler was completely sedated and there was no way of knowing what was breaking through. For the last couple of weeks, though, we had all felt a peace. We weren't able to figure out why that urgency went away, but that peace was something we knew was coming from God.

While in his room this weekend I was able to have a real conversation with him for the first time in about 50 days. I asked if he believed in God. He nodded yes. I asked if he believed in heaven and hell and he nodded yes. I asked if he knew where he would go if he died and he mouthed heaven. I'll pause here and say that this is a question that I've asked a lot of people. Most will tell you they are going to heaven, and most will tell you because they are a good person or they are kind to others or that God is loving. So, then I asked him why he said heaven and to my astonishment he mouthed "His forgiveness". I followed up by asking what He forgives us from and he mouthed "my sin". So I continued down the path of asking if he had ever lied, stolen anything, disobeyed his parents. He answered yes to many of the questions and I explained that even these small things are sin and we cannot stand before a Holy God as a sinner.  I started to talk through what Jesus had done...before I even said it he mouthed "He paid my fine for me"! When I asked if he has asked for this forgiveness and believed that Jesus was the only way, he nodded yes! Praise God! That is exactly it! There is nothing we can do to earn this salvation. It can only be a gift from God that Jesus paid this fine for us! I love how God works! I love that he broke through that sedation. I love hearing Tyler make a profession of faith in what Jesus did for him.

While I can rejoice in this fact, I am still devastated and heartbroken when I hear news like we had this morning. Today we were told that they will no longer do chemo. It is not shrinking the tumor the way they had hoped it would. The tumor has wrapped itself around very delicate and important areas of his body. At this point chemo is risky. After this holiday weekend, they want to have him moved or bring a specialist in that will consider other options and possibly surgically remove the tumor.  It takes time to process patients and get them to a new hospital, so they are starting that process now because it can't wait. Other hospitals now have the choice of taking him as a patient because he is already being cared for at another hospital. We need a hospital that is willing to perform a very risky surgery on a very rare cancer (on a boy we love very much!). The doctors won't even comment on what his chances are. Any time we ask, they respond with things like "this is a rare cancer" or "this is a very risky surgery". Heartbroken is such an understatement!

I have been seeing God's grace and kindness and mercy over Tyler. I believe it is a miracle that he is still with us and has been healing from the infection in his stomach. I believe in the power of prayer! I believe this kid is a fighter! I believe that these doctors and surgeons are amazing and knowledgeable. As I said the other day, we will continue to be joyful in hope, patient in affliction and praying without ceasing for Tyler. Please continue to join us in that prayer! 

Sunday, November 18, 2012

Small Victories

Tyler continues to make progress on healing from the infection that came after his stomach perforated. On Friday, he played his DS for most of the day. It was so amazing to see. He's slowly gaining back the simple things that we take for granted every day. With this, does come frustration for Tyler. He's annoyed that he has no privacy and that he has to be taken care of. He's frustrated that he's still laying in this hospital bed. All he wants right now is to get out of there..oh...and to drink a Sonic Slushy.

Our tears of joy at his progress often turn into tears of sympathy as we watch him struggle with the reality of what is going on. He is no longer sedated, but still on heavy pain medications. So, he is often asking what is happening and why he is there. Michelle is super amazing at answering those questions for him. Last week, he asked if he had been shot as he pointed at his stomach in confusion. It's a tough time for him to process all of what is going on. He also gets annoyed that everyone keeps telling him how good he looks. So, I explained to him that a few weeks ago we didn't know if he was going to make it and seeing him this way is so exciting to us and to his doctors and nurses. He asked me if I had taken a picture of him so he could see what everyone was talking about. I told him that I hadn't but that the blog would be a really good picture of what he was going through. When Michelle thinks he's ready to handle it, she told him they would read the blog together.

I encourage you to post comments. I don't think they always function properly on here. They will not show up right after you submit, but they will tell you if it was submitted. So, if you're having trouble and want to send Tyler some words of encouragement that he can read later, you can send him an email at tylerkurkierewicz@gmail.com.

Below is a comment from Tyler's Aunt Tammy that she wasn't able to publish, but I don't like to be the only one talking around here anyway...so here's a comment from Tammy that was supposed to post to the last post:

Thank you for that verse! I am hanging onto being joyful in hope! I just so happen to be reading the blog as I was sitting in Tyler's room today. Not long after reading this, he woke up. He began asking Michelle (his mom) about the trach. He was concerned that it would hurt to talk through it. Michelle, the most amazing and strongest mom in the world, gave the most wonderful explanation! Through her explanation, she plugged the trach and instructed him to talk. How wonderful it was to hear him speak! For those of us who have experienced his frustration with wanting to communicate, can truly understand this joy! I had to hold back tears while hearing his voice! Wow, what we take for granted!!!! On Monday they will put a valve in so he can speak. Please continue to follow the blog for more details on his trach.
Although this is a long and painful process for Tyler and for those who love him so much,we thank you, Lord, for giving us this hope! We continue to have hope, faith, love and trust! We are truly a blessed family!
We are so grateful for all your prayers!

Thursday, November 15, 2012

46 Days

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:

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!

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 :)

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!

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.

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!

Tyler's Aunt Cheri and Aunt Patty manning the front table
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.

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),

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.

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.

Friday, November 2, 2012

Chemo Underway Again

Well, Tyler has had 2 days of chemo treatments so far this week. They are keeping a really close eye on his kidneys to make sure they continue to function even with the chemo treatments. The doctors said we probably won't see any effects from the chemo until today or tomorrow.

Tyler continues to be sedated and on some really heavy pain killers, but that isn't preventing him from waking up. Again, he's very emotional when he wakes up...crying, pointing, sometimes beating his chest. It's such a heartbreaking thing for us to see and we can't help him, or even know what he's asking us, to give him an answer. It's very emotionally draining for all of us. Please continue to pray for strength for this family and that the doctors would have great wisdom in managing his pain and agitation.

Wednesday, October 31, 2012

If you want to donate blood - see below

Tyler is in need of blood transfusions. Tyler is O+ and can receive O+ or O- blood. If you want to help Tyler and are one of these blood types, we have a prescription set up at the Red Cross so that you can donate directly to him.

The blood is only good for 21 days and you can only donate every 8 weeks. So, if you can't do it this week, we'd love if you can wait a few weeks. We have lined up quite a few donors already (such a blessing...Thank you!). We'll send a few reminders out as we need more.

If you're type O blood and eligible to donate, can you email me directly if you'd like to donate. Send an email to jetfields@yahoo.com with your full name and the Red Cross MI location you would prefer to donate. We'll get you set up on the list and let you know when we need you to donate.

If you're not type O, giving blood saves lives, so go ahead and make your appointment today anyway!

Thanks everyone! I'll leave you with some nice shots of Ty at his graduation last May.

Tuesday, October 30, 2012

Starting Chemo Again and Needing Blood

The oncologist, and the other doctors on Tyler's team, have agreed he is stable enough to start chemo again! It's strange to be excited that he can have chemo. But, we're thankful for this news because we're back to the cancer battle after this 3 weeks or so of a huge set back. The cancer treatment is more complicated now, with the stomach issue, so they are going to give him small doses instead of the aggressive doses of chemo they started with earlier this month. That will start tomorrow.

Tyler is also in need of blood transfusions. He took 2 full bags yesterday. Tyler is O+ and can receive O+ or O- blood. If you want to help Tyler and are one of these blood types, we have a prescription that we are setting up at the Red Cross in Warren. Someone will be dropping that off later today there and getting everything set up. Starting tomorrow (hopefully), you can go there and tell them you want your blood to go directly to Tyler and they will clean it and bring it to him daily (if anything changes on this, I will post an update). Here is the address for the Red Cross:

Red Cross
13260 E 11 Mile Rd
Warren, MI 48089

Please continue to pray for Tyler. The chemo is a double edged sword with the stomach complication, but they have to address this tumor! Please also continue to pray for Tyler's pain management. He is waking up a lot and is in pain, uncomfortable and crying. It's so heartbreaking, especially because he can't talk with the ventilator. He's our baby and we hate seeing him this way! So continue to pray for strength for those that love him so much. Thank you!

I was just looking back at some of the posts and wanted to again thank you for your prayers. We give God all the glory for choosing to answer. 3 weeks ago, we feared Tyler would not make it through this stomach recovery. We were in need of a miracle. We praise God that he has made it this far.  Last Thursday, I asked for some specific prayer points in this post. He answered many of those requests. Praise Him!

So do not fear, for I am with you;
do not be dismayed, for I am your God.
I will strengthen you and help you;
I will uphold you with my righteous right hand.
(Isaiah 41:10)

Monday, October 29, 2012

Progress Report

I like to call it that, because Tyler continues to make progress, in terms of healing from the stomach surgery! We're so happy to report that his numbers are all going in the right direction. His kidneys are fully functioning again and the swelling is still coming down. The surgeon came in today and said that he is still critical, but moving in the right direction. The plan is still to keep him at this hospital.

In terms of the cancer, the oncologist (cancer doctor) will make the decision on when he can start chemo again. Once he is healthy enough, they can do the chemo even if they haven't closed the stomach. We were relieved to hear that. I'm also happy to hear them mentioning the oncologist again because a few weeks ago they had said that the cancer isn't the concern right now...we have to get him through this stomach recovery. That tells me there is progress, although maybe it's not as quickly as we'd like. 

Thank you for your continued support and prayers. We praise God, our Comforter and Healer, that He is answering. We continue to pray that Tyler will be fully restored to good health. Please also pray that Tyler will be able to get comfortable and that the doctors will be able to manage his pain. It's so difficult to watch him in pain and not be able to help! We're also so thankful for this team of doctors, nurses and other hospital staff for saving his life. We pray for continued wisdom for them as they treat our boy!

Sunday, October 28, 2012

Today is Ty's 18th Birthday

Happy Birthday to our buddy. He's still stuck in the ICU, and not able to talk or eat or truly celebrate, so we'll have to celebrate when he's out. Normally, we'd be gathering at the coney warehouse for some pizza and Chicken Shack and watching football for his bday. Then we'd get the ice cream cake out to sing and he would be really annoyed by all that attention. He'd be rolling his eyes and suffering through it...just because he knows his annoying family is also generous and would give him some cash for his bday after the painful singing bit.

Tyler continues to be in a lot of pain and discomfort, but making progress on getting better from being septic. We will be finding out tomorrow what the plan is from here. There has been some talk of getting him transferred to UofM or somewhere else that specializes in this rare cancer. Please pray that the doctors and Michelle will have great wisdom on what the next move will be. Please also pray that his insurance coverage isn't affected by his age, and that everything will be covered. If not, we continue to be blessed by the generosity of those that have donated. If you want to wish Ty a happy birthday by giving a donation, we would so appreciate that.  His mom is unemployed, as some of you know, and she still hasn't left his side. Such devotion! If you find it in your heart to donate, just click here http://www.gofundme.com/1drbvk . Thank you!

Saturday, October 27, 2012

Some progress

Tyler's kidneys continue to work and he is able to process the fluids they are giving him now. Praise God! This has taken the swelling in his upper body down significantly. His stomach and legs are still swollen but they have come down some as well. And, with the fever blanket on, he has not run a fever for the last 24 hours! He was also breathing on his own for 6 hours yesterday. The doctors are happy that he's making progress...slow, but it's progress. Please continue to pray that the swelling in his stomach and legs would go down and we would continue to see progress.

Now that the swelling has gone down, the brutal effects of the chemo are showing through. Tyler's skin is extremely dry and he has lost a lot of weight in his face and arms already, and he has lost a lot of hair. He's also a little more awake and shows signs of pain and discomfort. That, of course, is difficult for us to see. Please continue to lift our family in prayer for strength, especially for his mom. Thank you!

Thursday, October 25, 2012

Updated Prayer Requests

Not a whole lot to update you on. Tyler is still the same. Running a bit of a high fever today, at 103. He was able to breathe on his own for 4 hours yesterday, which is good. They are trying to keep his lungs strong to prevent him from getting pneumonia, since there is a lot of fluid sitting on his body.

Please continue to pray, here are some specifics:
  • complete healing for Tyler
  • the tumor would not grow during this time without chemo
  • the infection would clear up quickly
  • his fever would come down
  • he would not get pneumonia
  • the blood clot would clear up and not travel up his body
  • the swelling to come down and his body to start processing these fluids
Thank you for your continued support! We are truly blessed by you all!

Wednesday, October 24, 2012


We are already feeling overwhelmed by your generosity for Tyler and Michelle, and we're 2 weeks away from the fundraiser. So many people have already expressed their caring with time in prayer, visiting the family at the hospital, bringing a meal, sharing Tyler's story with others, making a donation of money or items for the event. We are so very blessed. God is so good to our family. We praise Him for every blessing we see poured out through you all. Thank you!

This morning, Tyler had another surgery. They did the same thing as before in just cleaning him out and checking him. He is still way too swollen to consider closing him. He's still very critical, but yesterday was an encouraging day since we finally saw some progress. Praying for more days like that ahead!

Please continue to keep Tyler in your prayers. We are so thankful for you!

Don't miss the post below this about the fundraiser - we'd love to see you there!

Tuesday, October 23, 2012

A little good news this morning

I just got a text that Tyler is not doing dialysis this morning because his KIDNEYS ARE WORKING!!! Also, they pulled him off of the ventilator for a bit and Tyler was breathing on his own for 2 hours!! Yippee!! I'm so excited about this news! Tyler will be so relieved if he can come off of that ventilator soon!!

He is nowhere near out of the woods, but we hold on to every piece of good news at this point. Please continue to pray that we will see more progress.

Don't miss the post below this about the fundraiser - we'd love to see you there!

Fundraiser Time

We would love to have you join us for an evening of fun and dinner. Here are the details:

Spaghetti Dinner to Benefit Tyler Kurkierewicz
Thursday, November 8th
5:00 PM – 8:00 PM

National Coney Island Chip Shotz
22185 Masonic Blvd
St. Clair Shores MI 48082

$20.00 per person - all you can eat
12 and under Free
Cash Bar

Door Prizes, Raffles, 50/50

All proceeds directly benefit Tyler and Michelle Kurkierewicz. 

If you can make it, will you please mark that you're planning to attend by clicking here so we can get a count.

If you can't make it, but still want to make a donation to Michelle and Tyler, we set up a secure way to do that on GoFundMe. Just follow this link - http://www.gofundme.com/1drbvk

To make a donation for the raffle items, call my dad - Don Fields at 586.524.3847

Reason for the fundraising: 
If you've been following, you know the dire situation Tyler is in. In addition to the physical suffering there does come financial burdens, unfortunately. Michelle is currently unemployed. She was working a temporary job before all of this happened, but since she has not left Tyler's side, she has not been able to work. Our family has been helping to support them in paying bills and keeping up with everything. But, it looks like Tyler is going to be in the hospital for some time still. And this isn't even the cancer battle - that will come after he heals from being septic. That battle is at least 4 months of chemo treatments. We have a long road ahead. As for medical expenses, they are currently covered. Tyler is turning 18 on Sunday, however, and they may drop him from coverage because he is no longer a minor. All that said, it's fundraising time. 

Monday, October 22, 2012

7th surgery complete

Tyler managed to pull his feeding tube out of position with all of his frustrations over the last couple of days. So, today they went in and tried to secure it again. They also cleaned him out and will go back in again in a couple of days. He's also going to start getting blood transfusions because his blood count is low. They will continue to do dialysis and watch the blood clot. Today he's running a fever of 103 again.

They have switched up his meds to try and keep him more sedated again. They also ordered him a bigger bed, so hopefully these things will get him a little more comfortable. He's in a lot of pain and he's frustrated and emotional when he wakes up. It's really taking a toll on the emotions of the rest of us who are watching him struggle.

We thank you for partnering with us in continued prayers for Tyler and our family. We know it has been a long time, with many updates, and not a whole lot of change or good news. But please don't be discouraged, keep the prayers coming! Here are some encouraging words, for my prayer warriors, that I read this morning.

The righteous cry, and the LORD hears And delivers them out of all their troubles. ~ Psalm 34:17

The Lord is near to the brokenhearted and saves the crushed in spirit. ~ Psalm 34:18

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. ~ 2 Corinthians 1:3-4

Sunday, October 21, 2012

21 days

Well Tyler has been hospitalized for 21 days now! Ugh. It has been a really long October so far. Tyler completed dialysis this morning and then got really frustrated afterwards. It took him a long time to calm down. His blood pressure was high, arms were swinging, and he was doing his best to fight off the medicine. I'm happy to report that I just checked in on him and he is now sleeping as comfortably as he can be in this situation. I think he is as fed up with being here as we are seeing him in this discomfort.

We have started rotating nights of staying with Michelle, amongst all of us. She hasn't left the hospital in a few weeks. So we are also taking turns doing her laundry and washing her hair for her in the sink, etc. We are in this for the long haul!

Tomorrow they are planning surgery again, his 7th one since being here. Please continue to pray for his healing and comfort...and a little sanity for the rest of us ;)

Saturday, October 20, 2012

Tough night

Tyler's surgery went ok yesterday. Same as usual, just cleaned him out. They will continue to do this every couple of days until the swelling goes down. He has gained 20lbs of water weight in the last 2 weeks. He is also starting to lose his hair from the chemo treatments.

Tyler made his favorite nurse (and ours), Laurie, work hard all night. We think he likes her attention. His fever spiked to 103.5, but she was able to bring it down with the cooling blanket. His blood pressure and heart rate weren't staying put either. Thanks to her hard work his numbers are looking better now. His fever is at 101 now. They are planning to do dialysis today again to help take away some more of that water weight.

We just found that he has a blood clot in his leg too. They will start him on some blood thinners today to help with that.

Friday, October 19, 2012

Surgery at 12:30 Today

Tyler is scheduled for another surgery at 12:30 today. The surgeon will again go in and clean him out and try to put a mesh in and close. Tyler's fever is at 102 and his heart rate is up today. Please pray that Tyler will heal very soon from being septic - that the infection will clear up so that he can close and heal. This is a tough road, knowing that the cancer battle still lies ahead. But, we will continue to hope and pray that he will come out of this and battle on!

Thursday, October 18, 2012

Thurs Update

Well, we are 2 weeks past the first surgery and Tyler is remaining critical, but stable. He had a good night, his temperature is holding steady at 99.5. Everything is pretty much the same as yesterday. We'll take that.

Since you've seen so much of my heart poured out on these posts, I wanted to share what Tyler's Aunt Tammy posted on her Facebook page yesterday. I love to see the heart of others who also love Tyler so much. Tammy works with special needs kids. I'm amazed at her stories of these beautiful little ones and give her so much credit for the strength she must possess to do what she does everyday. Here is her post she shared when she sent Tyler's update out yesterday:

"If you have been keeping up on the blog, you'll see what a roller coaster ride it has been! In the midst of all this going on in my life, I was in a meeting with a parent and listening to the struggles they went through in the beginning of their child's life and that how this child's life today is a miracle. I had to hold back tears and try my best to be professional during this time, of my life struggles, when the parent didn't hesitate to give his praises and said, "God is Great!" I had a moment and thought... "God is great!" He has a plan and it is a well planned masterpiece! We might not understand, but there is a purpose and reason for all things! I pray, trust, believe and hope that His plan will give us comfort and peace."
Amen! Please continue to keep Tyler and our family in your prayers.

Wednesday, October 17, 2012

Yet another surgery complete

Tyler just got out of surgery. They replaced some tubes, changed his dialysis port and put in the tracheotomy. They cleaned him out again, but weren't able to close. He is still very septic. They will go in again Friday to clean him out again and see if they can close. His blood pressure is still high, as well as his white blood count which is now 23,000.

Surgery at 10:45 today

Tyler's fever broke and is down to 99.8 this morning. Amen! What an answer to prayer! His blood pressure is 149/53, though, so they are watching that. The plan is still to do surgery this morning. Please continue to pray. As his Aunt Tammy posted on her Facebook page last night, this family believes in the power of prayer. Please keep it coming!

I'll get you an update as soon as I have details from the surgery.

Tuesday, October 16, 2012

Roller Coaster Ride

Thanks to all who have joined us on our emotional roller coaster ride these last couple of weeks. We had quite a scare this afternoon. It's no coincidence to me that a fever that continued to climb to dangerous levels all day, started coming down after I sent out an urgent prayer request to you all. Thank you for partnering with us in prayer for Tyler. God is good, even in these circumstances.

One of the many doctors tonight made a comment to Michelle that Ty is only alive because of his age. If this were a 30 year old, he wouldn't have made it this far. I say NO, that is not the only reason. We have the Most High God on our side and we'll continue to praise Him, even for these small victories!! We'll continue to ask him to be merciful to Tyler and this family.

Last week, Tyler's phone was getting texts from some of his friends. So I opened it up and started replying to his friends and giving them the blog to follow for status. As I was doing that, I ran across a text he sent to one of his buddies on the 4th (a few hours before his stomach perforated) and he said, "I'm just fighting for tomorrow...to see the next day". I say, "fight on Tyler!" and we will continue to hold you up in prayer!

The plan for tomorrow is to do the surgery around 10:45. They are hoping to put a mesh in him and close him, as well as do the tracheotomy for his ventilator. Again, thank you for your continued prayer! We so appreciate it!!

Urgent Prayers

Tyler's fever continues to climb - it's up to 105. They have called the family in, which is never good news! Please lift us up during this time. I don't have any other details right now.

Rough Morning

Tyler's having a rough morning. Now his white blood count is too high (20,000 range), he's running a high fever (103.5) and his heart rate is high (150 range). Tyler is sleeping well, though, so that is good.

You know, all we have are these numbers that the doctors are constantly updating us on. We aren't sure what they always mean, but just trying to cling to any positive news we hear each day. The doctors warned us that the numbers would fluctuate a great deal as he battles through this. They told us not to get hung up on asking what this or that means, or looking at the bags hanging around him and asking what this or that is doing, or looking at the machines and asking how it's helping...but it's so hard not to!!

I continue to ask you for your prayers for Tyler. We are waiting on the Lord and crying out to Him every day. For me it occupies almost every thought I have throughout the day. I heard this song this morning and just loved how it took the words right out of my head.God, we need you! Take a few minutes to listen and pray to the One true God on behalf of Tyler today.


Monday, October 15, 2012

Morning Update

Tyler's white blood count jumped up to 15!! This is excellent news. We no longer have to wear a mask, gloves and a gown when going in to see him. Praise God for this progress. We pray these white blood cells will kick into high gear and fight off this infection now!! The feeding tube is looking good and they are planning to start giving him some "nutrition" through the tube tomorrow. He's about to start his 6 hours of dialysis for the day.

So thankful for this bit of good news this morning. Thank you for your fervent prayers for our boy, Tyler. 

Sunday, October 14, 2012

Another surgery complete

Tyler's surgery went well this morning. They cleaned him up again and were able to put in a feeding tube and a drain tube. His blood count is up to 5 now. The dialysis is helping with that. He is now in dialysis for the next 6 hours.

The plan is to go back in on Wednesday and clean him again. They will also have to do a tracheotomy for the ventilator. He can't have it in his throat for more than 2 weeks, so they have to change that.  And with the drain from today, he will no longer have one going through his nose. Hopefully that will give him some more comfort.

Tyler is still very critical and very septic. We will cling to the positive news (Philippians 4:8) and continue to pray for his full healing.

Saturday, October 13, 2012

Surgery tomorrow morning

Everything is pretty much the same. Some good news is that Tyler's white blood count went from .6 to 2.5. He's still very critical and very septic, so please continue to pray that the infection will clear up. They are going to go in again tomorrow morning at 7:00 AM to see if they can put the feeding tube in and clean him some more.

He's starting to wake up a little more because his body is used to the sedation medicine. So, they switched his pain meds and that seems to make him drowsy. I was able to talk with him tonight, while his eyes were open for a few minutes. I guess I should say talk to him, not with him. Me and his papa Bill were in there praying over him and telling him to call on Jesus, even in his head since he can't talk. I told him how the Bible says if we confess Jesus is Lord and believe in our hearts that He was raised from the dead, we will be saved (Romans 10:9). I must admit I started crying when I saw his big burly papa begin to massage his toes and legs, and share with him how he prays. Such love for his grandson! Tyler, who hates to be doted over, seemed to be trying to smile or say something. He didn't give us his typical 17 year old eye roll. May God be glorified!

Please continue to pray for Tyler's healing and emotional strength for the family.

Much love,

Friday, October 12, 2012

No news is good news

Nothing major to report today. Tyler is remaining stable, although still very critical. He is undergoing another 6 hours of dialysis today. They have removed 4 liters of fluid from his kidneys through the dialysis, which is good. I also heard that yesterday when the surgeon went in again, he saw some scar tissue which is a great sign that his stomach is in the healing process.

Still praying for:
  • His body to clear up the infection
  • The swelling to go down so they can close him
  • For his fever to remain low
  • His body to remain stable and even improve day to day
  • Total healing for Tyler
  • Sleep and emotional rest for Michelle, Tim and the rest of the family

Thursday, October 11, 2012

One Week in the ICU

Today marks one week in the ICU for Tyler. They tried to go back in this morning, but weren't able to do the feeding tube. There is still a lot of infection. They are doing an upper GI today to see if there is some additional leaking or if there is an area they can insert a tube. I really don't know what all of this means, just repeating what I'm told. He will do another 6 hours of dialysis today too. They will try to go in on Sunday again for another surgery.

Here are the things I choose to celebrate today - we have 11,000+ page views on this blog in just over a week. That's right, 11,000! Thanks to the many people who are expressing their concerns and praying for Tyler and the family. God is answering prayers for us, even in the midst of still seeing Tyler in such critical condition. His vitals are staying good. He's still fighting!! I mean, a week ago, when we asked "what are his chances", the surgeon literally sat there and told us "Tyler is minute to minute. If he makes it through the first hour, great, we'll see what the 2nd hour brings" Those were really scary words to hear!!! Praise God Tyler is still with us 1 week later. We are continuing to pray for his recovery and will only give Praise to our Lord and Savior for his progress!


Wednesday, October 10, 2012

Surgery cancelled for today

They just cancelled surgery until tomorrow because the surgeon was called to another emergency. It is better, I guess, cause he is really swollen still. They have scheduled him for 10:00 am. He's back on dialysis for a few more hours tonight.

Dialysis underway

The surgery was delayed this morning. Tyler is having 6 hours of dialysis today. They started around noon. No one is allowed in the room, not even his parents. They will stop it at 3:00 and take him down for surgery. The plans for today are to try and put a draining tube in and a feeding tube in and redo some of the catheters that are starting to fall out. They will not close him today because of the infection and swelling, but will go back in Saturday or Sunday and try again.

Another Surgery

As of last night, they scheduled surgery for 9:00 AM today. I haven't heard otherwise, but have heard that his kidneys are still not working. They are planning to put him on dialysis after surgery today. His white blood count is at 0 at this point. Please pray that those numbers would go up, that his body would continue to fight this fight! We are so thankful for his doctors and nurses that are fighting with him. We are putting our hope and trust in the Lord.

Tuesday, October 9, 2012

Kidney Stints

Tyler's kidneys are not functioning properly. So, they went in this afternoon and put stints in both of them. Hopefully this will get them functioning again, to avoid more tubes and possible dialysis. His blood pressure is holding steady and other vitals are still good. Although his white blood cell count is still very low.

As you can see, we are still "praying without ceasing", as the Bible says, for Tyler. Please continue to pray with us.


Tuesday update

As of this morning, Tyler is still in the same condition, sedated in the ICU. His vitals are good. His kidney number is going up and his white blood count is going down, which is not good. They are talking about maybe putting a drain in there for the kidney. The surgeon is planning on going back in tomorrow to see if they can close him.

We're still resting on the hope that God will intervene and perform a miracle here. Please continue to lift Tyler up to the Lord. Please pray for continued strength and endurance for the family as well. 

Monday, October 8, 2012

The latest

Tyler's vitals are good and he's still fully sedated. They're a little worried about one of his kidneys that isn't draining properly. Other than that, everything is pretty much the same as yesterday. Just waiting for his body, and the 20 bags of medicine hanging by his side, to fight off the infection. The nurses are so incredible and we're thankful to have them by his side.

Most of the family is trying to return to work today, but I know our hearts and minds are still in that hospital waiting room.We'll be back there later today though.

The outpouring of food and visitors has been amazing as well. Thank you to those that have brought us food or stopped by to hug us. We love you.

Sunday, October 7, 2012

Needing a Miracle

Tyler has been out of surgery for a few hours. We had one of those surgeons with 0 bedside manner. If I had posted immediately after, it would have been a hot mess. So, I apologize if you've been waiting for an update. We've calmed down a bit, so here goes.

I'm struggling between keeping it positive and giving you the facts, but I'll do my best to lay it out for you. They opened him up and he is septic (full of infection). So they have cleaned him out again, but were not able to close him due to the swelling. Being septic can kill a healthy person after surgery, so having advanced disease and 3 chemo treatments before this began, puts him behind. But man, this kid is a fighter! And his mom, oh his mom....she is the strongest person I've seen in this. She is remaining calm and reasonable, when the rest of us aren't quite there all the time. But besides all of that, we are trusting in God for a miracle.

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.

I'll jump off my pulpit now. Love you all and thankful for your prayers and concerns!


Surgery is underway

They just took Tyler down for surgery! Praying for great wisdom for the doctors and a positive outcome!

The recovery from this surgery will be about 3 months. They are talking about holding off on all chemo until after that. We will know more when he gets out of the surgery. Gotta take one day at a time here.

The 12 of us just finished up some breakfast and singing a big happy birthday over the speaker phone to Tammy's Big 6 year old, Lydia! Happy birthday baby girl. We love you!

More updates to come.

Saturday, October 6, 2012

Surgery Update and a Glimpse into our days

Tyler's vitals are good, except that he's running a fever still. They are going to try again for surgery in the morning. Please pray that his vitals will stay stable and he will have a successful surgery in the morning. If you could also pray that the family gets some much needed sleep tonight, that would be great.

Since we've got some good news going, I'll lighten it up and welcome you to our new temporary home, the waiting room. We've basically moved into the place. I haven't seen less than 8 people there at a time, and as many as 25 or so. He's got a huge support system, both on line and in person!

The place wasn't clean enough for Patty, so she brought in all of her own cleaning supplies and scrubbed the bathrooms, door handles, pop machines, window sills and mopped up the floor a bit.

She even put a candle in the bathroom to make it a little homier!

And because those waiting room chairs do NOT make for a good night's sleep, we've added some air mattresses to our arrangements. 

We're eating healthy...okay not so much...

Patty is taking a lot of pleasure in giving Cheri a painful massage here...

Here's Tammy at her "home office" working on some IEPs

I don't know where Patty found this wheelchair for a little comic relief this afternoon

As you can see we're laughing, crying, eating, sleeping and even cleaning - we're totally settled in...but ready for our boy Ty to get better so we can all get out of here! 

I also want to give a shout out to our support systems who are keeping up with our laundry, house cleaning, taking care of our babies, bringing us food, etc. etc. so we can live our lives in the waiting room for a few days or weeks, or however long it takes. We have amazing husbands, families and friends!!!!

Love you all!!