Wednesday, December 16, 2009

Stubborn Little Suckers!

Tyler had just begun his first day at his old job, in preparation to return to work in January, when he got a call from Dr McGee.  The doctor told Tyler that he needed to come in for an appointment the following day to talk about a recent lab test.  Tyler called back to their office a few times trying to get more information, but no one could tell him anything futher.

Let me just step aside from my story for a minute to share a little fact that you could probably figure out.  It was extremely difficult to wait for 24 hours, wondering what the new information would be?  It ruined Tyler's first day with his work crew and our evening, as we worried about what exactly the bad news would be.  If you are a doctor or know a doctor, please tell them that bad news over the phone is infinitely better than bad news after a 24 hour wait.

After sharing our thoughts on that subject with our own doctor, we discovered that he was concerned about Tyler's latest BCR-ABL test results.  They showed a tiny bit of leukemia cells floating around in Tyler's system.  We had actually seen a test result from October that showed the same amount, but Dr McGee had indicated that a subsequent test showed no signs of leukemia so the October test was probably a fluke.

The amount of Leukemia shown as a ratio on this test was .02, which isn't uncommon for post transplant patients. In fact this ratio is in a range that shows that the chance of relapse is very unlikely. We want the ratio to be 0 however (negative), so we have discussed the possibility of another procedure. The goal is 100% remission.  On December 3rd at Puget Sound Cancer Care the test came back 0 (neg), and the same test done again on December 6th at SCCA came back as .02 again. The range for "very unlikely to relapse" is 0-0.10.

Dr McGee is referring Tyler back to SCCA for testing and possible treatment.  Most likely, Tyler would get a Donor Lymphomcyte Infusion.  This is like a booster shot of white blood cells from his father, that should stimulate the marrow to attack the leukemia cells that are floating around in there.  The goal of this treatment is to get Tyler back into full remission, but would likely cause a recurrence and possibly an increase in Tyler's Graft vs Host (GVHD) symptoms, but would also increase the Graft vs. Leukemia effect (beneficial). I know this all sounds very complicated, but we are working through this and finding out about the procedure.

Tyler would NOT have to endure the chemotherapy and radiation again with this treatment though.  It would be very similar to getting a blood transfusion, although his Dad's blood would be collected and boiled down to just the white blood cell part.

We have not yet committed to this treatment, but expect to learn more about it during Tyler's one year follow up appointment in a month.


  1. Oh wow - that wait must have been just horrible! I am sorry to hear that those little buggers are still floating around, but I just know that you guys are going to do everything to chase them away for good!
    Sending bunches of positive vibes, prayers and good thoughts your way...
    love and light

  2. oh geez, i hope everything is okay! i think it's good that the doctors are treating this very aggressively. hang tough tyler and mandy, positive vibes from me too!