9:45 pm. Just confirmed brain surgery for Lucy to be done in a week and a half. Why? Because we have a Neuro Oncologist, Neurosurgeon and Nurse Practitioner who will never stop when it comes to making sure we do everything in this world to give Lucy the best chance at an awesome life.
It's been a wild day but we are home. As in our real home, in our real beds. Tonight is the first night I've slept in my own bed since June 2nd. Boy, does it feel heavenly. Our family is together. The kiddos have been giddy with excitement all night.
We thought we left St. Jude with a firm diagnosis and game plan. As the day progressed things have shifted a tiny bit. In a nutshell, we have reason to suspect that Lucy has relapsed.
What's interesting is that it's not the area that Atlanta said it was. Our team thinks that its a totally different issue that we will have to figure out. Instead, there appears to be areas of leptomeningeal disease. The consensus is that it's a small area and does not seem to be aggressive.
That being said, we are seriously considering a course of chemo that will
hopefully work to put Lucy back into remission. Before that can be done, however, work has to be done on her shunt and possibly a biopsy will be taken.
So that's the news in an abridged version. All I can say is "who knows what tomorrow will bring." If there is anything I can say for sure it's that nothing is for sure.
I'm so confused and emotionally drained, but I am so happy to be home with my family. Today we received a gift. One more day together as a family. I've said it before but going through an ordeal like this sure helps you put life into perspective. Everyday is a gift.
Thank you all for you continued prayers and support. We have some huge decision to make and covet your prayers and love.