Week 2

Sunday night I cut her hair to be proactive about the inevitable.  Her first haircut done by a non professional.  I cut as much as I could.  I hugged her to tell her I was sorry and she hugged me back.  With every cut I told myself, "no attachment"  but I hugged her again each time.  With each hug, she hugged me back.  Did she know?   Was she comforting me when I thought I was comforting her? I'll never know.  
This week came around quick.  Let's see...we were discharged Sunday and came back on to the hospital on Tuesday.  One quick push of another chemo drug as an outpatient.  The only trouble with this scenario was it took us longer to travel then the appointment actually took.  We chose to got to get treatment at a hospital that had experience with her type of cancer.  We knew it would be a drive for us but we would do whatever it took to get the best result.  We were beginning to feel the stress of the travel.  There was no easy way around it.   Travel via RR or bus with a sick child, no way.  People already gave us the look with the non verbal autistic thing.  We were the aliens in their eyes.  Expose her to a closed compartment full of germs while her immune system was down, get out of here.  This is was just the tip of the iceberg of worries.
Okay, so I forgot one thing that could have made it so much easier on Jasmine's experience.  At least I remembered to bring her ziploc bag full of new meds, paperwork, our new medical bible, barf bags, the just in case overnight bags and the topical.  I forgot the one important step about the topical.  I didn't seal the cream in place over the injection site.  I brought her anxiety level up because  I forgot something so simple but so important.  She did well with the chemo and we had a couple of close calls of sickness.  We found that she liked soy milk and was eager to drink it.  She was still not willing to eat.  Things were looking good by Wednesday and Thursday.  Her energy level picked up and so did her eating.  She was starting to act a lot like the Jasmine we knew.  
Friday came and things were okay for a little while.  She started to fuss a lot for no particular reason. We just couldn't figure it out.  I found that she was starting to lose her appetite.  Dinner was no fun.  I thought she had eaten two chicken nuggets but to my surprise they were still her mouth.  She had partially chewed them and left them sitting on the side of her mouth.  She was drooling.  I tried to get her to open or chew with a little push to the cheeks on either side. No such luck.  I tried to finger sweep it out and she resisted everything. She finally spit some of it out after I removed part of one nugget.  The rest of the night was on and off discomfort.  I still could not figure out from what.  It was not until Saturday afternoon that I figured out with a pen light and toothbrush that it was a mouth sore.  I called the doctor to find out what we could do.  She was obviously uncomfortable and refused to eat or drink anything. She said it sounded like thrush and would call in a prescription. By the time we got the prescription and started her first dose she had developed 5 more to the one I discovered earlier.  This was not good.  
I was so careful about brushing and rinsing her mouth with swabs.  I hate that this is happening to her.  It's not like she hasn't lost enough weight as it is.  She's hungry and can't eat what she wants.  She's trying to eat but has to spit it out because the process is too painful.  I hope it won't take a week to heal like the doctor said.  This was supposed to be what me and David referred to as the "lite" week.  Halloween is starting to look like a bust. Poor Jasmine.  God please make tomorrow easier for her.  If this keeps up, they are going to want admit her on tuesday.  The one time I can't be there.  I have to try to work all week especially because the following week will be a heavy chemo treatment. I want to be there that week. No negotiating on that one.  Work or no work.