Since the tumor board met this afternoon, I've spoken with Dr. Geyer, Summer's oncologist, and Dr. Browd, her neurosurgeon.
Here's what we know:
Summer will be having surgery to drain the cyst, probably early next week. They'll install a shunt that will connect to a reservoir between her skull and her skin, and the fluid will collect there instead of in the middle of her brain, to allow for easy drainage as needed. It makes me nervous to have something like that in her head, but as my mom pointed out, at least we'll be able to tell when it's filling up.
We'll be meeting with Dr. Browd sometime in the early part of tomorrow to talk with him face-to-face about the surgery and to schedule a date. I'm going to push for Friday if at all possible, but it sounds like it will be sometime early next week unless things change drastically. She'll have an overnight stay in the PICU followed by another 2-3 days on the floor, for a total of 3-4 days in the hospital. A little better than last time, but not by much! At least this time we will be able to plan for it and pack accordingly.
They also reviewed her scans more closely and found that the tumor mass has grown. The cyst and fluid expansion accounts for most of the growth, but the mass itself has grown a little too. They feel that the risks for long-term side effects from radiation at this young age no longer outweigh the risks of the 'wait-and-see' approach, and are recommending that we start planning for proton therapy radiation now.
Planning can take anywhere from one to two months, and we'd be sent to either MD Anderson in Houston or Massachusetts General in Boston, depending on which one could get us in first.
I've emailed Dr. Merchant at St Jude again to let him know of this development and to see if there is any chance his protocol would be ready in or near that timeframe so we could still participate. In the event that it's possible to work with Dr. Merchant instead, we would be going to the University of Florida Proton Institute in Jacksonville. When I spoke to him a little over a month ago, it wasn't to be ready for 3-4 months, so I'm keeping my fingers crossed that things went more quickly than expected!
I'll post again after our appointment with Dr. Browd tomorrow.