Today we had a follow-up MRI with the neurosurgery team in Oakland. They were awesome and got us in right away, even though we were early, and afterward took us right to the doctor, even though he was between appointments with other patients. He looked at the scan and did his magic move over her head and declared that she still does not need a shunt! His gut feeling is that she will eventually, because most babies with this level of surgery do end up with them. However, as long as she doesn't show fluid accumulation, she won't be getting one. If she needs one in the future, during chemo or otherwise, he will do it.
They also removed the non-dissolving stitches and declared that her incision is still healing well. Her head is very lumpy and has bony protrusions and soft spots all over, but they promise it is healing correctly and all will work itself out over time. Overall, a great and very rewarding appointment that left us feeling very good!
We went from there to my "old" school, where I worked a few years ago. I am very attached to the school and everyone there since I went to school there as a kid and my mom has worked there for years. Getting laid off was crushing, but they are all awesome and still keep in touch and let me come and visit. We walked around with Scarlett and eventually had half the teachers huddled around us in the hall as they "oohed and aahed" over her. Having everyone coo at her is so fun - it's much more fun to have that reaction than the sympathy head-tilt that often happens when people hear what she has been through. So, this is for them - HI GRAHAMMIES!!! (now you can be famous with Scarlett, Mel!) :-)
Our next step is a meeting with the neuro-oncology team on Monday. We have been reading and studying the full, 250-page study protocol that we are considering for Scarlett. I am so grateful that I have some ability to read and understand the research discussion; my recent experience reading research papers - despite them being in education, not medicine - has given me some advantage in attacking this hulking document that explains all the risks and benefits to Scarlett. It has empowered us in so many ways, and led us to ask solid questions about Scarlett's treatment. Combining this with the contacts we have made with other patient families, we feel we are entering the deep, dark world of infant chemotherapy with some understanding. I am proud of us as Chris and I learn a little more each day and can make educated comments and decisions with highly respected doctors; a little ego boost amongst the darkness.