Next Tuesday, we will be meeting with Cailyn’s oncologist and a radiation oncologist to gain as much information as we can about the options that are available to us for stabilizing her tumour. We are also getting the opportunity to meet with one of the neuro-radiologists who has interpreted her MRIs.
It’s a weird feeling… the last 10 weeks have all led to this moment and yet it seems like we’re moving in slow motion towards it… kind of like the car accident that happens seemingly instantaneously but you have all kinds of time to wonder when you’re going to experience the actual collision.
There will be a little posse of us in the meetings… the emotional support is a true blessing and the perspective and informed discussion after the meeting will be invaluable to me gaining some semblance of peace of mind with Cailyn’s and my decision. This will be the first time Cailyn has participated in this kind of conversation. It has been over the course of this last year that she has demonstrated a preparedness to participate in her health decisions and has unequivocally stated, “I am going to be in the meetings!” She is obviously a critical part of the solution but her participation is definitely a double-edged sword for her… knowing more will require her to cope with more.
Our task for this week-end is to finalize our list of questions for each of the specialists. What makes this decision so difficult is that there really is no way to know for sure which of the many potential risks might be realized by Cailyn. And, as we’ve learned along the way, there can be outcomes that no one anticipated in the first place, because each child is unique in how their body responds to the intervention.
I anticipate some very interesting conversations as we are desperately looking for answers in an arena where there are simply no guarantees of short-term effects and long-term outcomes.
Wish us luck!!