The one thing that has been a constant during Conner's battle is that absolutely nothing is consistent. For a person who used to get the shakes if she didn't always have her calendar, I have barely glanced at the one on my desk in the past few months. I learned early on that it wasn't worth planning more than a day ahead because it was all going to change anyway. This is probably the biggest "what if" game I have ever played. This has been one of the biggest lessons for me, I can't plan what is coming next so I am trying everyday to just let go and let it flow. Have you ever tried that? It is HARD.
Conner is not able to continue on the CUDC-907 trial due to adverse reactions. The protocol for the trial is specific and if there are more than two adverse reactions, the patient must stop. Conner's ANC dipped below 500 and because this is not a chemotherapy drug, his ANC should not have dropped. Again, being that we are only patient #12, the "suppose to" is a big grey area but I believe this is meant to be as his little body just couldn't handle what this drug was giving him. We are going to Cleveland on Thursday to see Dr. Anderson and discuss our next treatment plan. Conner will probably get Radium-223 injections 5&6 which should (see, I am planning again) allow us to be home for the next two months. We will do scans again in early December.
We have enjoyed being home the last few days and loving on our fur babies. I am thankful that I can do laundry again without paying for it and do it in the privacy of my home wearing my pj's. We loved the experience of living in the city but I think I might be too old to do that again, or at least too set in my ways to do it without a washer and dryer in my apartment.
I wish I had words that could express my gratitude for all of you. Thank you just isn't enough. Honestly, unless you walked in my shoes for a day, I don't think you can know how I feel and how much your support, in all it's forms, means to me and my family. I will continue to say thank you though....just know it means so much more.
Conner, Casey and Bryan
P.S. the dogs have not left my side since we got home and have snuck up on the bed EVERY night too. It makes me so happy.