Tyler - 17 year old fighting cancer!

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

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

Adjusting

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!