Another Good Day

Another good day...except NO POOP (I feel like I'm becoming a broken record).

She slept in again this morning and barely got up when we were jetting off to the clinic. Had a nice walk over to MDA and they got us in almost immediately (plus we were early!). Dr. Wolff spent a great deal of time with us following up on things. We are still trying to track down the MRI that Joann sent so while we were talking with Dr. Wolff, he zipped an email off to Dr. Khan, Joann, Dr. Mahajan...pretty much anyone involved in her care...trying to track down the MRI. Also found out that she should have been on the accutane over the weekend. Again, typical hospital miscommunication where we thought we were waiting for the meds to be compounded and they assumed we would give it to her ourselves with our stash. I told him we would start giving her the meds this afternoon and he wants to see us again tomorrow to get the Accutane situation straightened out. He also said that he wants to get her blood drawn at least 3 times a week instead of just once per week (just in case). He was concerned about the non-poop issue and wanted to order an enema. He said I could give it myself but I didnt' feel comfortable doing that for multiple reasons:
1. I'd never given her one myself (just witnessed and assisted the nurses when she'd had them before) AND (more importantly)
2. I don't need her associating MOMMY with any more negative procedures.

The only problem was, we were only about an hour away from her proton radiation time and they didn't want to give her an enema and then have her "lose it all" on the radiation table. That could cause a whole host of problems. So we left with an appointment for 8 AM tomorrow and a prescription for lactulose which she started this afternoon. Fortunately, she took all her meds (the accutane went in the applesauce and the lactulose went into the chocolate milk) so we're good for tonight. Who knows. Maybe she'll poop before tomorrow (we can only hope...)

After the clinic, we headed over to proton center and didn't have to wait TOO long. They only took her 15 minutes late today. That's progress. Unfortunately, someone was celebrating the end of their treatment. Good for them, I guess, but there was food EVERYWHERE in the lobby. Charlotte didn't seem to mind but I really just about lost it when this very chatty woman who was waiting for her husband came over with cookies and some kind of pudding in her hand. She not only offered food but when I politely told her WHY Charlotte couldn't have any food, she continued to hold the food in front of her face and engage me in a huge conversation about her life. Oh joy. No offense to her, but I didn't really want to hear her life story and I REALLY didn't want her hanging food in front of my daughter's face (or mine for that matter since I was hungry myself).

Sometimes I really understand Charlotte's seemingly antisocial behavior. She's really not antisocial, per say, but she definitely likes her alone time. And I can totally understand that. Sometimes it's nice just to sit there with a book or a puzzle and not talk about cancer or medical treatment, or...whatever.

Anyway, after she was called in to the gantry and put to sleep, Grandpa and I went to get her prescription filled and get me some lunch. We timed it all just right and came back to find her in recovery. We were out of there by four pm. I think that's a record.

We came back to the house and she took all her meds (as mentioned) and ate some good lunch/dinner. Now it should be my turn for dinner soon. Rumor has it Ronald McDonald is coming to visit tonight!

Update:

POOOP!!!!

Yes, ladies and gentlemen, Charlotte has pooped. Maybe the lactulose finally kicked things into gear. (Plus all the "prayers for poop"!) It was kind of small (considering the amount she's consumed in the past week) but NOT hard (yay) and things are finally moving again. Maybe we can even avoid the enema tomorrow. See what the doc says.

She also ate even more tonight, having some cheese, chocolate milk, and bread crusts from the garlic toast (she likes the crust, not the soft middle). She watched the Ronald McDonald magic show from a distance but didn't want to get a picture with him or meet him.

On a slightly concerning note (it's always something, ain't it?), she is having trouble bending her knees. She's refusing to bend down to pick anything up or bend down to be changed. Have to check again with the doc about that. Apparently, pediatric PT services are hard to come by at MDA so I'm not sure what we can expect.

Have a good evening, y'all!!

Rachel