It's 9:00 on Tuesday evening and I just got a call from Ethan's oncologist here in Connecticut (these doctors put so much time and energy into their patients' lives and I'm so thankful for them and the late nights they put in!). And I was simply relieved to hear that he was just as "unsure" about the need for Ethan to go on Accutane for year, as I was. He mentioned that the decision initially came from Ethan's oncologist in Boston, because it is a protocol they follow with their in-house JMML patients in years prior. Our Connecticut Oncologist questioned the rationale as well, and isn't fully convinced that this is a necessary step since Ethan's showing no signs of relapse. He's going to instead suggest that we have Ethan's blood tested at his next Boston visit (June 8th) to see if he's still showing all donor blood cells (and none of his former cells - they judge this by the blood type). Apparently this is not a routine test that's done. If all signs still point to 100% donor cells in Ethan's body then he doesn't believe further action is needed. If for some reason he's showing some of his old blood type, then the Accutane may be something we want to consider since that can be a sign of relapse. Needless to say, I'm much more comfortable with this approach... and much more at ease now that I know our local oncologist has just as many reservations about this as I do. He said he needed to be completely convinced that Ethan needed the medicine and that a bit more due diligence was in order.
If I haven't said it before, I'll say it now... I couldn't be more thankful for the Connecticut Childrens Medical Center oncology staff and their oncologists. They are so easy to work with. So very caring. And take each patient as seriously as if they were their own child. I'm pleased as punch that Ethan's local doctor and I are on the same page about this.
So now, we just have to make sure that in June, Ethan's blood is showing 100% donor cells! But God's got that under control, right! No matter how many butterflies are in my tummy right now just thinking about what I'd do if they said he's showing two blood types... guess I gotta re-read my below post from earlier today before I go to bed!