1 week in...

Technically, today was our 9th day in this nightmare that we can't wake up from. Not a lot of major updates these days. Trying to grasp the enormity of our situation, the long road ahead, and trying to get thru each day without collapsing from exhaustion or despair.

Soph is progressing. Doctors are pleased with her progress. She is eating more (though it's hard for her to keep it down sometimes), moving her her arms and legs (though she favors her right side), and we even got her to laugh and smile a few times. We miss our smiley Sophie. She finds comfort in some of her favorite shows, Doc McStuffins, Sofia the First, Max and Ruby. We brought the tablet PC from home and the occupational therapist is using it to help Soph. She still will get super mad at the nurses and doctors and fight like crazy, but I think she is slowly understanding that she has to stay here to get better.

From the treatment perspective, the second opinion process has started from Mass General. I honestly do not expect anything drastically different; we are still leaning towards the proton therapy from the Warrenville location, 5 miles from our house. The biggest question I have is how much of a difference does experience make in proton therapy? Warrenville has only been in operation for 2-3 years, where Mass General has been doing it a lot longer.

The convenience of Warrenville is so nice, but we want to make the best decision possible for Soph. Please pray for wisdom with that.

I have been connecting with other families of pediatric brain tumors, specifically medulloblastoma, and it's a sort of double-edged sword. On one hand, it's amazing to hear from people who know what you are going thru, and are so kind and open, even with complete strangers. On the other hand, it's disheartening to read the trials, struggles of those who are farther along the treatment path. It will be the hardest next 10 months of our lives. I was talking to my sister tonight, and we have been so sheltered from difficulty in our family. I'm trying to be strong, but I've never really had to be strong.

Thank you all for your prayers, visits, food, hugs. It's really, really humbling and we are overwhelmed with gratitude that people are standing with us, supporting us, loving us. Keep it coming, we need all the help we can get. Continue to work with our family friend Jen Cho (jencho2000 at yahoo dot com) for visits, meals, etc.