I will have more detail on this soon. I have a hard time sitting here and looking at my daughter with tumors in her head and behind her eye. It just isn't fair.
We are waiting for her to have her mIBG scan today, which she will be sedated for. (**UPDATE, she did not have to be sedated for this, she slept for the entire thing :))She also starts her 1st round of Radiation today at 4:30, which she will be sedated for as well. All of this sedation makes me nervous, however it is safe. I am also comforted by knowing that she does very well after sedation and she is sleeping, which means she is not in pain. Of course, since we are sedating her twice today she can not eat or drink and she is asking for food. It is frustrating to us because we want her to not be stressed so we have a natural tendency to feed her and take the stress away. When she is under stress we know it hurts her head. But this is the path we have chosen for her and we will deal with it and make it work.
Saoirse has to be on an antibiotic for 2 weeks that makes her feel bad.