We did have a pretty good day today up here in Boston. We started our many meetings at the Proton therapy center and we are both convinced this is the place to be. These docs seem so organized and knowledgeable and intelligent about this whole thing. We are still working on getting Hannah into their inpatient rehab program, since our insurance is still deciding to accept it and there was no bed available for her anyway. There will be a bed available beginning tomorrow, so we hope the insurance will come through by then. For now, we are staying at the Holiday Inn right next to MGH. Actually it's a nice break from the whole hospital setting right now. We drove up last night, got here about 10pm. The trip was ok, Hannah slept about half the way and cried the other half. The night last night was horrible though. Dave and I don't got any sleep at all, and neither did Hannah really. I don't know what was different, but Hannah was complaining that her back hurt. We assumed it was from the lumbar tap, but when she started crying again today at the doctor's office, they didn't believe it was at the tap sight. Of course, you immediately think the worst like it's another tumor already on her spine. It really seems to be bothering her. The sent us for a chest xray tonight just to be sure this isn't a complication from the port. We should have the results tomorrow. She is sleeping right now, so I hope this lasts throughout the night. She has another full day of meetings and tests tomorrow. She has a 3 hour CT simulation during which they prepare her for her radiation treatments. They showed us today this mask that they make for her to wear during the treatments, and it looks like something from Friday the 13th movies. She didn't see it, so hopefully it won't be that scary for her while she's wearing it.
We have more meetings tomorrow also, will update again.
Kim and Dave
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