Friday, March 2nd

It is now Friday evening. Hannah has spent the last 2 days meeting with our team of doctors here at Massachusetts General. Dave and I knew from the first hour here that this is the place to be. We met with our pediatrict oncologist (who handles the chemo), our radiation oncologist (the proton radiation), endocrinologist, social worker, neurologist, neurosurgeon, audiologist, anesthesiologist, and still have a host of other doctors to meet with also. They do have it very well coordinated and set up for us though, so at least we don't have set up all these appointments. They all seem to always know where we are, which is kind of scary!

Hannah had her 2 hour CT scan and proton set up. They put her to sleep for everything, so she didn't have to lay still which they paper-mached her face into the Jason mask. They take the information from the head CT and combine it with the information from the MRI she will have done on Monday and the physicists come up with the exact positioning for the proton beam, including the measurement of the radiation around the tumor. She does have to have radiation to her entire spine and entire head, in addition to the posteria fossia, which is where the tumor was. They will give her higher doses to the tumor area, while giving the standard dose to the rest, to try and keep the side effects to a minimum. They try to keep the radiation area at the tumor site as small as possible to minimize what it will compromise and what side effects will occur. But they also want to keep it as large as possible to ensure this aggressive tumor does not come back. Hannah watched a video of the whole process on Thursday morning, including the making of the mask, the radiation and the whole set up process. Her one question was "do I have to have a shot (iv)?" She is handling this whole thing remarkably well. She is of course scared and apprehensive since she was basically taken out of her old life and plopped down into this new one where there is nothing but doctors and shots and blood draws and leg cramps and no friends and family and bad food and cancer.

Today we were admitted to Spaulding Rehabilitation Center, the pediatric rehab hospital which is a part of the MGH system. This place is wonderful. The doctors and nurses are upbeat and very nice. Hannah had 3 therapies already today and she really likes all of the therapists. She is doing so much better each day with her balance and coordination. She can now get herself into a sitting position. I came back into the room today and there she was sitting up by herself with this huge smile on her face. She also loves now that she can walk with a special kind of walker. She and I were walking up and down the hall tonight with me helping her and she just kept squeeling and laughing and saying "I'm so proud of myself". Her next question was "can we go home now?" She wanted to make a bet with me that she could walk from her doorway back to her bed with me just holding her hands (rather than supporting her from behind like I have been). If she won I would owe her a quarter. She did it-with me holding her hands and forearms and promptly announced that I now owe her a quarter. Even as she went off to sleep tonight her last words were "mom, you owe me a quarter". She is so happy here, and finally proud that she is accomplishing things she couldn't do before. As of this morning, she is talking in sentences and talking louder. Since the surgery, she would only whisper, which was a product of the surgery to the cerebellum as well as a fear. It's just great to hear her voice again and see her so excited and smiling!

As I'm typing this I can look out Hannah's window and see the downtown area of Boston. It's almost like they gave us this view so that we could look at it to keep our minds off of all this. It is a nice distraction, a 10th floor spectacular view of this city we wish we weren't in. Thank you again for your thoughts and prayers, they mean a lot to all of us.

Kim and Dave