Sitting around with Evy in the hospital room, waiting for word it's ok that we head home until Monday when we will come back for surgery to implant chemo port and a spinal tap to look for floating tumors in her spinal cord. We can't leave until they test her levels of her seizure meds at 4 and proclaim that they are sufficient for discharge.
Then we will go home. Stella and Evy will be reunited for a short time... Stella has been so sweetly confused by all of this. The Northern VA Ronald McDonald House has been a refuge for us during this time. Stella has been able to see me about once a day, and she still gets to sleep next to dada and also enjoys playing with Grammy Pammy all day long. It will be interesting to see how Stell reacts to the healing scar on Evy's head... to Evy's lack of mobility.. but I think this will be so good for all of us. I did go ahead and find a place for our dog Misha through this (thanks to Jen and the army of FAHA volunteers at the ready!) On the one hand I know pets help lift spirits, but I am also afraid of our big boy knocking Evy over, as he has demonstrated in the past. Also, the idea of dealing with an energetic dog on top of everything is just too much. I hope the girls aren't too sad when we go home and "Mimi" isn't there.
So we'll go home. And if you know me at all you know I will be psychotically creating uber healthy vegan meals and my Vita Mix will be a-whirring with green smoothies. Gotta get this girl as strong as possible for our first round of chemo.
As for knowing the exact schedule and types of treatments, this is still up in the air... the Brain Tumor Consortium, which includes some of our doctors, will be working hard to come up with a treatment plan that is tailored to the most recent research and findings about fighting AT/RT. So for now all we know is that we're going home, getting some R & R and some bonding time, and then heading back up here to Fairfax Inova Hospital on Monday.