shifting focus...

I would call yesterday a day of shifting focus. It's amazing how our perspectives change so drastically from day to day. Last Sunday, we couldn't think of anything beyond that day, just to make sure Sophie would make it through the surgery.

As the week has progressed, the focus moved from surviving the day, to how long we'd be here (we're still thinking about 3-4 weeks total), to the long treatment road ahead (9-10 intense months), to now her quality of life in the years ahead.

While we are surely not out of the woods yet, with her hydrocephalus, general surgery recovery, rehab (speech, OT, PT), we're starting to think ahead. Even the challenging days of treatment, though we know they will be hard, frustrating, tiring, WE WILL GET THROUGH IT. We'll need all of your help with the radiation therapy, chemo, too many visits to the hospital, but WE WILL GET THROUGH IT.

Today was an interesting day also, along similar lines as thinking long-term, as I got in touch with an old college acquaintance who is a radiation oncologist in Boston, specializing in medulloblastoma, the same cancer that Sophie has! It was good to hear a frank perspective from an expert in the field, and he also brought up an alternate radiation therapy, called proton therapy. Only 11 locations in the US operate proton treatment centers and one happens to be in Warrenville, which is all of about 5 miles from our house!!!. We brought it up with our neuro-oncologists, and it turns out they were actually leaning towards this treatment anyway, just didn't mention it in our initial treatment plan conversation on Weds.

Anyways, we are still going to get a second opinion from Mass General for peace of mind, but are leaning towards the proton therapy, b/c the advantage of being able to localize the radiation is appealing to us. Radiation therapy can have some long-term side effects, and the localization ability of proton therapy might mitigate the risk of some of those side-effects.

Of course, nothing is guaranteed through all this. There is data out there, but not a lot. Everyone is different, reacts differently, but we are determined to fight this through, and we believe that the faith of all of you interceding on our behalf will make a difference in this battle.