May 17th - Treatment #9

Today has been a really good day!  First, our appointment was an hour later than normal, so we weren't in quite as big of a rush this morning and I didn't wake up all night long with dreams of being late.  Also, Kayla asked me if it was time to put the sleepy cream on before I even mentioned it.

So, we got Nathan and Lily off on the bus and dropped Benson off at another friend's house and drove to Boise to the MSTI clinic.  

Kayla did awesome again while she got her port accessed.  No crying or whimpering at all.  She sucked on her dum dum sucker and sniffed some good smelling chapstick (the cleaning soap stinks and she gets a bad taste in her mouth when they put some of the initial fluids in her) while Bryson distracted her by looking for a penny in a little seek and find toy.  (If you find the penny, you get a prize--I didn't think he'd put it down until he found it, but he did (put it down that is, maybe he'll find the penny next time!)).

We met with Marnie, the nurse practitioner again today.  I told her about Kayla's appointment with Dr. Lee and she was very pleased with everything.  The dentist's office also had called me this past week and had scheduled a dental surgery to take care of some of Kayla's cavities.  Her dental surgery is scheduled for June 7th at 8AM (which means we will have to be at the hospital by 6AM which means we will have to leave our house by 5:15AM. . . can't wait. . .).

Bryson asked Marnie about Kayla's hair.  The child life person, Deborah, was in with us, too, and she said that what she has seen with patients getting the same chemo Kayla is getting is that their hair often thins, but doesn't fall out entirely.  This has given us a lot of hope!  So far, I haven't seen any thinning at all.  

After all that, we came in to our usual spot in the chemo suite.  Miss Stephanie, the music lady, was there and she and Kayla had a great time playing instruments and singing songs!  I think this is the most Kayla has opened up to anyone here yet.  I'm sure all of the nurses are a little jealous.  They are all trying to get her to smile at them or talk to her.  Kayla was laughing, being super silly, talking and having a lot of fun with Miss Stephanie.  

Here are a couple pictures of Kayla playing along with Miss Stephanie:

I didn't get pictures of the silly stuff, these were from the beginning when she was busy focusing. :)

We just got done eating lunch and now Kayla is lying on the bed watching Snow White.

So, things are looking really good right now.  Next Thursday is Lily's Kindergarten graduation, so Bryson will be going to that and it will be my first time bringing Kayla alone to the clinic.  Seeing how well she has done the past couple weeks, I think we will be totally fine.

Also, today was the day to get another IV dose of Pentamidine.  But, the doctor decided not to do it today, but scheduled us to come in on Tuesday next week just for that.  Pentamidine does not mix well with zofran.  So, looks like next week will be full of doctor visits--Tuesday at the clinic, Wednesday is my ultrasound and Thursday for Kayla's regular chemo.

And hopefully, she will be okay tomorrow.  For the past two weeks, she has woken up sick and has thrown up for a couple hours on Friday morning.  Even with 2 doses of zofran and last week she got an extra steroid to help with nausea, but she still got sick.  So, we'll see.

Another week down!