Wednesday, March 4, 2015

quick update.

Waiting is the worst. No matter you find out good news, bad news... the wait on which it will be, is the worst part.

Our onc called last night before I went to bed and it was just news that requires more waiting and thinking. The radiologist said "slight growth". Then the oncs looked at it and were sort of "ehh" about it. Not that they totally disagree, but we'll see.

Tumor board is tomorrow. Which I always try to picture in my head and sort of have this overdone concept of what it is, but basically it's this: all the oncs, the neuro surgeons, radiologists, whoever sit around and go through patients. They talk about our scans, how we're doing, etc. So tomorrow, the radiologist will present (ish) reese's MRI. If there is some overwhelming "ooooh you're right that is growth worth worrying about!!" then we will swap treatments/chemo.

I am not certain, and neither are the oncs, that it's time to give up on vinblastine, though. It has been said by some that vinblastine MRIs sometimes have growth at the beginning and then stable out the rest of the time. Has it done part of the job? Maybe. It surely didn't grow like it did from Sept through December, right? I don't know, exactly when it grew. Maybe this was from the last MRI through the beginning of chemo. There is no way to know those things. So we'll just see, tomorrow, if we want to give it more time. That is not necessarily to say that it is a life-long fixer, but that stable year with this "easy" chemo, sounds amazing. And with a child that feels 100% awesome, it's not a bad idea to keep at it and do another MRI in 6-8w, as they stated. Our onc will talk to his colleagues and knowledgable friends in high places (lol) and we will talk tomorrow.

I don't feel as if it is my time to worry right now. Again, even after being somewhat surprised bc reese feels/acts perfect, I feel a sense of relief gaining more information. I like to be fully informed, I like that I have doctors that talk with me and not to me. I like to research and ask questions and have a list of things that are potentially "next". I am the type to get 2nd, 3rd, 10th opinions just to hear "yes, I agree with them".  I will spend the rest of the day talking like I am an oncologist while I wait for the real ones to chat me up. So, until tomorrow, there's really nothing else.

Except this headband that the kids made for reese. There's that.
  reese's headband1


  1. Been thinking about you today. Waiting stinks, for sure. I will be praying over here in the meantime. You just keep being amazing with your kiddos over there.

  2. Lots of hugs and prayers and hope for a clear direction moving forward.