Monday, July 27, 2009

An Update

Doing a whole lotta nuthin' sure makes me tired!

Charlotte didn't settle in to sleep until after midnight last night (sheesh). I did manage to get her to eat a few veggie straws before bed in hopes that it would sustain her a little longer during the day. I woke up and got myself ready, going downstairs while she was still sleeping to eat breakfast. I figured a hearty breakfast would help me hold out till proton therapy so I ate the leftovers from Roger's Mexican lunch the day before. They were good....and filling!

Then I roused the princess and we set off for the children's cancer center. We didn't have an appointment but Roger insisted that I should just "show up" and they'd work us in. About 10 AM they got our labs (we had come in about 8:30) and about 11:30 Reh, our nurse, let us know that her labs looked pretty good and instead of seeing a doc at the clinic we should just go ahead over to the proton center. Her weekly "checkup" with the radiation oncologist was scheduled for 11:30 and Reh figured as long as some medical professional was following up with her, they didn't need to see her till Wednesday.

So we trudged over to the proton center. The shuttle ride was not bad, actually. Got there, checked in, they took her vitals, and we waited.

And waited.

And waited.

Finally I asked someone what was up and they looked into it. Turns out that Dr. Mahajan is out this week and so Charlotte is supposed to see Dr. Woo and HE is seeing all his patients on Tuesday. Nobody had told us this, but it was on our newly revised schedule. BUT the newly revised scheduled had not been posted online. I was told the solution to this is to get a new printout of the schedule every Monday morning to assure accuracy. I'm not sure how I can get a printout before coming TO the proton center for my Monday appointment but somehow that has escaped everyone else's logic. Maybe the radiation gets to their brains a little in this place.

Anyway, so we were just MEGA early for her proton appointment that was scheduled at 1:30 (and of course, in true form, they didn't see her till 2:30). I did ask about moving up her time slot but they don't have anything available earlier for two weeks when she will then have a 10:30 AM slot.

Through all this, Charlotte never complained once. She never asked for food. Never said she was hungry. We did snuggle and cuddle a few times, which was nice given the cold shoulder she usually passes my way. We read some books and she entertained herself in the play areas. Finally it was her turn and Grandpa and I headed off in search of lunch for me (at 3 PM). She finally roused around 5-ish and we headed back to RMH for dinner. She did eat some cheese slices, applesauce, and a bunch of crackers tonight. And some chocolate milk. Her belly is getting VERY full and kind of rigid. She has not been able to bend down all day and she tells me that it hurts her tummy. the kid needs to POOP!! We keep giving her mag citrate and getting her to walk as much as possible. She told me that she "doesn't like to poop" so I hope she's not holding it in voluntarily. That could be a problem. I told her that she doesn't get to watch her "new favorite" goodnight video until she goes poopie so hopefully we will get results soon.

Other than that, she doesn't seem to be demonstrating any ill effects from the radiation (knock on wood). She is full of storytelling today and the bulk of our conversations revolve around her retelling some facts or plot points from Dora, Diego, Sid the Science Kid, SuperWhy, etc. It's very cute! Especially when she says things like, "Condors are the largest flying birds in the world."

Today I was the chauffer (stroller pusher), chaperone, and master chef. Plus I got in some light reading. Nabbed a book from the book exchange that has been very good so far. It's the newest Wally Lamb book and I've enjoyed his other two novels. We'll see. Oh, and I did payroll. The romp n' roll employees will be happy. Thank goodness for remote internet and quickbooks online. So I actually did some "work" today too.

Charlotte looked absolutely ADORABLE in the dress Aunt Phyllis sent. She wore it today and wowed everyone. She was a purple princess today. I will attach a photo. In this picture, she is making a grilled cheese sandwich using an iron. Very creative, I thought!

We did get to end our day with a skype chat with Daddy. That was fun and Charlotte was actually engaging for a few minutes. Seems like things are going well in VA as well. One day many more to go? September seems a LONG way away.

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