Saturday, January 19, 2008

Back on J-5

Tyler spent all of Friday resting, but never did feel very good. Friday night did not go well.

This morning I took Erik to his basketball game. He did great, and his team is still undefeated.

When we got home Kathy was sitting with Tyler, who was in significant pain. We spent 4 1/2 hours in the emergency ward before we finally got moved to J-5, the cancer floor. Tyler's fever is back, and there is an infection running through his body. He has no ability to fight the infection since his white blood cells are still undetectable. His head, jaw, mouth, gums, and ears are the areas of greatest pain. He also has a very painful rash that has started on his right side. At this point the doc's believe it is all chemo related stuff. He does have an ear infection, and they are looking for other sources of infection. They expect we will be here a few days to get things under control and identify the source of the problems.

In all the pain, Tyler was alert enough to see we were admitted into room 3, the best room on the cancer floor. He asked for my phone to tell Kathy, who is home with Erik. I guess we were given a free upgrade due to our frequent customer points. The nurses had written a nice "Welcome Back Tyler" note on the board in the room.

Tyler is doped up and sound asleep now, receiving more platelet transfusions.

When we came on to J-5, I had that strange feeling like I was coming home from a long vacation. I began chatting with the nurses, and checking the board to see who else was admitted. I felt very relaxed. Then, when I realized how comfortable I was, I became very scared. That can not be a good thing.

I am still concerned about the tendency of Burkitt's to relapse at this stage of treatments. In that event, bone marrow and stem cell transplants become the new course of action. The great frustration is the fact that the chemo side effects are identical to the early signs of a relapse. A "wait and watch" approach is taken.

7 comments:

Grandma Ruthie said...

Kyle and Kathy,
The prayers of our church continue to be with Tyler and all of you. May God be with you and may Tyler be able to win this fight. Your courage and strength has been an inspiration to all of us. Tyler, our love and prayers are with you.
Grandma Ruthie and Grandpa Joe

Lisa Slonecker said...

Well, darn it...we are sad that you are in so much pain, Tyler. But, you are where you need to be and where you can receive the care and medicines you need.

Kyle--That feeling of being "at home" at the hospital...we know that feeling. What a crazy jumbled up kaleidoscope of emotions this cancer journey present. Keep focusing on the positives and know that your prayer warrior are hard at work.

Lisa

deyerles said...

Dear Tyler,

We are praying this morning that you wake up feeling stronger and in less pain. I hope it won't be long until you are able to go home. By the way what makes room three so special? Fight to Win!

Love,
Debbie

P.S.
We only got 3 inches of snow but it is beautiful and if we can find a descent hill we're going sleding this morning!

Rachael Vieth said...

Kyle,
I think your feeling of being "at home" at the hospital and feeling a little relief is knowing that you and Kathy and Tyler are not alone in this fight. At the hospital you have many wonderful doctors and nurses helping Tyler to get well. It is a good feeling to know that you have help raising and taking care of a child. No one can do it alone. We are all here for you.

Kylee said...

Tyler

I am glad you are in room 3. I'm sure your parents will also enjoy the extra space. I requested room 3 on my second round because it was empty but instead I got the smallest room on the floor. I was not pleased lol. Hope you can return home soon.

Kylee

dina bornhorst said...

I can understand why you feel so at home on J5 -- you have also spent more time there than you have at your own house in the last two months! But at least you are in the best possible hands right now -- I pray that Tyler can continue to rest and that the docs can get his situation under control soon --

Please take care -- We are thinking of you all and praying for you --
Love,
Dina and family

Bonnie Alfriend said...

Debbie,

Room three on J-5 is like the Penthouse Suite - spacous and bright. Tyler loves it. It is also great for Kyle and Kathy who are "living" there as well.

To see how the three of them are handling all of this is a amazing in and of itself and a blessing to witness. The nurses and staff consider the Alfriend's a favorite family. So positive, so nice and a lot of fun.

Was Claudia Jayne able to make a snow man?

Love,

Bonnie


Bonnie