Just a quick update as I’ve spent the majority of the evening working through the logistics of everything related to these results and it's been a tiring week… At about 7:30 tonight, Dr. Park called and said she had spoken to the three (yes, three!) pathologists that had looked at Caden’s bone marrow slides. None of them felt comfortable calling any of the cells neuroblasts. Dr. Park could not really speculate on what the two cells taking up the stain might be (she’s not one to speculate), but when asked if they could be matured (and therefore benign) cells, she said, "It's possible." There might also be disease that just wasn’t captured in this sample. So, bottom line, I think, is that we are in the same position we have been in for the past 10 months or so. His disease is so minimal that it is captured some of the time. It could decide to aggressively grow one day, or it could just go away on its own. We have absolutely no way of knowing (I think Dr. Park says these exact words to me every time we talk).
It sounds as if the bone marrow report will read “inconclusive”. As such, he does not have “evidence” of disease and therefore does not qualify for the trial in Texas with these scans. We are hoping to learn that he qualifies for the DFMO trial sometime tomorrow and will start on that next week in Salt Lake City (just an overnight trip), but we will see… I’m not sure how they will interpret the “inconclusive”.
Dr. Park has also said it is time to move to scans every three months instead of two. She said if it comes back, two versus three months won’t make a difference. (insert a sarcastic “comforting” here) Right now, I’m continuing to be so happy that his disease (if it is really still there) hasn’t “progressed”, we won’t be on a flight to Houston in a few hours (that was going to be very interesting last-minute packing for a 6 week stay), we get more Montana summer (it really just started two weeks ago), looks like we’ll get to take that long overdue trip to Massachusetts and run the Falmouth Road Race raising money for neuroblastoma research, and Caden can start kindergarten without medical trips for at least the first few weeks. SO HAPPY and thanking God and the universe for these things.
I’m just going to have to make peace with the constant uncertainty in our lives and the discomfort that resides in my heart. Caden, well, he just goes with the flow. Every moment is a gift with our sweet, sweet boy. We did some silly pictures today (while waiting for the phone to ring) and I've posted one of Caden's favorites.
We’ll keep you updated!