April 19th (Treatment #5)

Each week that we have gone to the clinic has improved.  This morning when we woke Kayla up to put on her "sleepy cream" she knew what needed to be done, but wanted to do it downstairs.  It was still a little struggle, but not too bad.  

We got Nathan and Lily on the bus and then dropped Benson off at a friend's house.  Kayla was tired so she slept in the car on the way to the clinic.  She did great getting her blood pressure and weight (with me holding her still).  She did really well getting her port accessed, too.  Still a little struggle, but definite improvement.  

We talked to the nurse practitioner (Marnie) and Kayla did great.  She is starting to answer her questions and didn't fight when she examined her.  She was pretty happy the whole time.  

I asked Marnie questions like is going to the library okay?  

 - She said it is one of those risks that we can decide if it is worth it or not.  We actually went the other day and just got a couple of books and I wiped them off with a Purell wipe (thanks, Cori--I take them everywhere!).  I will probably try to avoid going during busy times and not check out too many books if I can help it.  

Another question was about gardening.  She shouldn't play in the dirt at all, but she can help plant as long as she wears socks and shoes and changes her socks and shoes when she is done.  We have to be REALLY careful about mold and fungus.  It's one of those things that if she gets contaminated by it, it could turn into a life and death situation.  

One thing that the doctor and nurse have been trying to work out is dental work.  Kayla has a couple pretty nice cavities that I was waiting to take care of until she felt better.  Well, now it complicates things.  Marnie told us today that they are hoping to get it scheduled for sometime in the next two weeks.  They need to schedule with the dentist (a certain one that has privileges at St. Luke's) and Dr. Lee (the ophthalmologist) so they can all do their thing while she is out.  This might be tricky, but I am hoping to get a phone call this week or next week so we can get this done.  

A cub scout troop donated these really cute homemade bags full of fun things for the chemo patients.  Our friend, Jenn, the child life specialist, came in and gave one to Kayla.  It was full of crayons, coloring pages, stickers, a crown (see pictures below), rings, squinkies, pencils and an eraser.  It also had a card where each member of the troop signed the card and it had a picture of them inside.  This was such a neat thing for her.  

Here's a picture of her today:

She is only getting one of the drugs, so our visit is significantly shorter (hooray!)  She is also getting the Pentamadine (antibiotic) which has given her a yucky taste in her mouth, so she has been sucking on dum dum suckers and trying to hide the taste.

Our appointment was at 8:30AM again this morning, but we should be leaving before noon (it's 11:23AM right now).  5 down, 55 to go!