Progression

We found the tumor on May 1, seven and a half months ago. There was a month of recovery after surgery, and then a month after that, we started radiation. My daughter finished radiation on August 11, four months ago. The average time from radiation until disease progression is about six months. We got four. 

Her latest MRI did not show the stable results we wanted. There was a new area lighting up in her ventricle that was not there before. The doctor said it is suspicious for progression, but she can't say for sure. She will discuss it at her tumor board next week and then present my daughter's case at the national tumor board whenever that happens again. Next week, we will need to decide if she comes off treatment and whether we want to pursue a new clinical trial or not. Doctors typically wait six months to do a second round of radiation, so that is probably not the direction we take at the moment. Despite what the MRI shows, right now, my daughter is doing fine clinically, and she doesn't have any symptoms. I am worried about how quickly the disease appears to be coming back and how all the meds may not be working.

My husband is with my daughter at UCSF. I am home with my youngest. My husband called me during the appointment so I could listen in to the results. I'm glad I was on mute. He held it together much better than I would have. I know how hard it was to keep a brave face and continue with the day as if everything is ok. 

They come home tonight, and all I want is to give them both hugs. My youngest has been sleeping with me while they have been gone, and it has been nice not to be alone. I've been keeping myself busy all weekend. Saturday morning, I met a friend at the gym. We hiked and ranted about our problems. I met another friend for sushi. We ate and ranted. I had a book club brunch on Sunday and work yesterday. I've felt anxious while they've been gone. I have never not been there for an MRI. I probably bugged my husband too much with texts and phone calls. 

This morning I woke up all puffy-eyed and forced myself to go to the gym. I usually like to go to a class, but I just can't right now. I got on the elliptical and went for two miles. Feel like crying in the gym? Just go faster until it passes. 

A Song For Crying and Running at the Gym

Fred again feat. The Blessed Madonna, "Marea (We've Lost Dancing)"