First off...very good day yesterday. Don't think I got irritated once that wasn't my fault. :-)Charlotte kind of slept in (9am) and I got some laundry done in the morning.We walked to the main hospital and caught the shuttle to the proton center. Walter Johnson the shuttle driver was on duty and I passed on what I had learned about his namesake. On the way back, I got to meet the famous Imelda the shuttle driver. She already knew CJ and knew about me from Rachel. It's a little disturbing when you're getting to know the drivers by first name.Everything was totally smooth at the proton center and we saw some of the regular crowd, Alex, Talia, and another new friend of Charlotte's named Halle. Halle is a kick! I understand she has had a very rough go of it post-surgery (she had a similar kind of PNET as Charlotte) and has been feeling very sick for quite some time. Well, just recently, like, this week, they finally found a drug that keeps her stomach settled and, according to her mom, she's a completely different kid (Where have I heard THAT before?). When I met her yesterday, she was vibrant, energetic and handing out food to people in the recovery area (that's OK) even though she was still NPO and must have been hungry, herself.
The treatment started at 10:30 and only lasted 30 minutes or so since they are done with whole head and spine and now will concentrate on spots in the brain. I didn’t go anywhere and read a little out of my newest acquisition, Inkhart by Cornelia Funk, a moderately OK movie was made of it but the concept is kind of cool so I had to make Aunt B buy it for me when I saw it in Costco! I didn’t realize there were three books in the series. Probably should have picked them all up.
Another nice thing about the proton crew is that they made these calendars for all the patients to cross off days until the last treatment and yesterday, I noticed they had hung up all the current calendars on the wall low enough so that kids could cross off their own days if they wanted. 12 treatments to go!
When Charlotte woke up, Halle came over to talk to her and Nurse Tye (I've since realized, SHE was the one who was handing out chocolates in the lobby THAT DAY!!!) had Halle bring Charlotte a huge chocolate muffin piled high with chocolate frosting and sprinkles. (I think Nurse Tye has Italian grandmother in her in that she doesn't seem to feel right unless people are eating something. She really seems taken with CJ)Charlotte usually only munches lightly on pretzels or crackers or other little snacks when she first wakes up but when she saw that frosting, she woke up pretty quickly! It was piled up on top and I'll bet there was nearly a quarter of a container's worth on there, no exaggeration. She pretty much polished off all of it and “helped” me eat the actual muffin. I'll admit. It was pretty darned good.Halle's mom was very much amused at her "reinvigoration" and let her run amok which nobody seemed to mind. I'm sure it's a very welcome change. I clearly remember the first couple days of feeling better after being whomped by the flu. It’s nice.Back to the main hospital on Imelda's shuttle and we (CJ) had lunch at Chick-fil-a. Yes, after eating that huge muffin, she was still ready to eat more and she did. It was so nice to have a "normal" lunch with my daughter. She even took off her hat and put it on the table. That's pretty big as my PSYCH 101 tells me she's feeling more confident.This has been slowly happening and I've seen her come out of her shell more and more, play with ("tolerate," more accurately) other kids, and do stuff like the art projects in the lobby. She even posed for, not one, but TWO pictures yesterday. One made its way into a frame colored by Mikayla.It was still pretty early and Charlotte was feeling tired so we headed up to the room. She didn't nap but chilled with nearly every book in the room and then a Sid The Science Kid video. (LOVE those!) I was feeling pretty toasted too so I tried to nap. CJ must have a problem with that because she constantly wakes me up to tell me that she finished another book or that the latest episode has ended and here's what happened...At least I got a little nap.Oh yeah, and she pooped! It had been 4 days and I was going to slip her a gastronomical mickey but before I could, she gifted me with a regal defecation!Another uncomfortable realization: It's bad enough to talk about CJ's bowel movements with everyone, but what does it say when one finds oneself discussing another person's "troubles" with that person, right alongside that person's family; and it doesn't seem weird to anyone there? Such is the surreal world in which we exist. People, kids mostly, routinely and unconsciously show each other their scars, compare central line ports and Hickmans, and talk about poop (grownups do it plenty, too). Back to PSYCH 101, it's probably a way to make things feel normal.
On a whim, we (me, Charlotte, Mikayla, and Halle) decided to have a Tinkerbell fest in the big TV room upstairs. The girls got pillows, blankets, and permission from their parents, I got the Tinkerbell movie (graciously lent to us by the wonderful Beasleys), and we headed up. But before, we did, I checked our mail and what should happen to be there but a package from the Schools family: a Costco gift card, some very nice cards and drawings, and a super cool (and timely) Tinkerbell “art portfolio” shaped like wings chock full of pencils, pens, markers, etc…It was a big hit and all the girls played with it while I flailed away trying to get the DVD player working (turns out I had the wrong remote).
I think there’s something of a power struggle brewing between friends of Charlotte. EVERYONE wants her to pay attention to them and that’s not a skill she’s developed yet. Rachel and I might have to run interference or set up individual playdates or something. I guess it’s a good problem to have.
We have proton at 10:30am again and then we’ll head over to the Children’s Center to start topotecan.
Updates as they happen (or at least in a day or so!)
p.s. I’m looking for singers for a song I’m doing at Rompy’s Summer Concert Series on Thursday, Aug 20. It’s one, moderately easy song and I need all parts. The rehearsal is Monday evening at 7:30 at Romp n’ Roll VA Center if you can make it. Part are already written out and it won’t take long to learn. Feel free to recruit! I wouldn’t mind a cast of thousands! :-)
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