Wednesday, October 29, 2008

New Plan

The plan that they have created (since the transplant can not yet proceed) is to have a Brain MRI for Tyler and then another Lumbar Puncture on Monday. The LP is to measure whether or not the cells they saw this week were just the last onery cells dying off. The brain MRI is to investigate WHY none of the treatments have worked yet. Tyler has had several rounds of chemo to his spinal fluid and a heavy dose of radiation that all should have killed off every speck of leukemia. The doctor says they will be looking for a "leukemia lump" in his brain somewhere. I didn't know that leukemia could form a solid tumor, but that sounds like what they are looking for.

All of this makes me wish that we had caught Tyler's leukemia much earlier and maybe had more success as fighting the dang disease!

In the meantime, the doctor expects that we will have several boring days at UW just waiting for tests and for healing. Dr Turtle did mention that Tyler's White Blood Cell count had gone up this morning, so the doctor thinks that Ty's body will start to recover now. It would be a blessing to have his throat return to normal. I bought Tyler a 36-pack of Mountain Dew for his birthday and it would be a crime for me to drink it all without him.

He is swallowing NOTHING these days, so he is unable to take his Tasigna. The doctor thinks that will be okay, but I get worried when they talk about his WBC climbing up and I know Tyler is not on his leukemia meds. It does give me peace of mind to know they are watching him so closely while he is in the hospital. If we had experienced the not-breathing episode last night, I would have been beside myself trying to figure out what to do. It took me long enough to find the nurse's call button as it was....

I'm back to spend the night with Tyler again. It's an interesting way to try to get rest. They wake us up every 4 hours to take vitals. I know that is important, but I weigh that against the importance of sleep. Maybe I should take ear plugs tonight??


  1. I come in to your blog a few times each day, guess its because I am thinking of you both so often and keep waiting to read some good and wonderful news along with a plan that will fix this leukemia and make it all just go away!

    Here's hoping that tonight is good and restful, filled with easy breathing and gentle smiles.

    love and light
    and a big hug for both of you

  2. Thank you so much for consistently commenting and caring. I havnt been able to respond to a lot of my comments due to an inability to be very computer savvy........but I am catching up. If it helps at all today has been a great start. Yesterday evening I had the Ear, Nose, and Throat specialists put a camera down through my nose where they could view the swelling, blockages, etc.... behind my uvula and esphogus. They recommended some steroids and wow what a turn of events. I had been wondering to myself many times why no one was addressing my main problem and someone finally did. Im looking forward to a whole day of feeling well, and maybe even eating tonight or tomorrow. Good timing for my birthday! Take care


  3. Tyler,
    I read the Blog everyday, I think about you everyday at least once. You have always been so strong and positive. I know that being in pain really sucks, I hope you get some relief.
    You are one of the people I think about when I'm at work and dealing with the negative side of life. You and Mandy remind me that not all people are bad and I need to keep my perspective. You've been one of those people my entire 20 year career. I'm sending you thoughts of strength and love.
    Mike Boggs

  4. Here's wishing you a really good birthday - as good as it can get under the circumstances.....

    Having a camera put down your nose sounds just, well - ummm, not the most pleasant things out there.

    I hope you get to drink some of those Mountain Dew's!

    Happy Birthday, Tyler... May they just get better and better in leaps and bounds from here on out.

    Love and light

  5. The Mathieson clan is thinking about you both...

  6. Tyler, just say no to Steroids ! We don't want you to come back on the soccer team and be busted for performance enhancement're perfect the way you are !

    Keep thinking about you, best wishes and enjoy that heap of Mountain Dew...


  7. Happy Birhtday Tyler!!!

    Chris, Suzy, Jakob and Isabella