June 19th - Week 14

We went back to the clinic on Tuesday for Kayla's next treatment.  We didn't have to be there until 9AM this time, so I had time to get up and go walking, shower, get everyone ready, drop them off at a friend's house and be on the road around 8-ish.  

Things went smoothly when we got there.  They weighed her (she has pretty much stayed the same weight, some weeks lost a little, others gained a little), took her blood pressure and temperature, and accessed her port.  Then we went in and she started playing some musical instruments with Miss Stephanie.  

Marnie, the nurse practitioner that we were seeing that day wanted to talk to me alone, so while Kayla was busy having fun singing songs and making music, I went and talked to Marnie for a few minutes (this is a big step for her--letting me leave the room).  Marnie talked to me about Kayla's medications.  She has been getting zofran each week through IV, and the past few treatments she has also been getting a steroid (something like dextrose, I think) to help with nausea.  Most weeks she will wake up the next day and throw up and feel nauseous for a couple hours.  Anyway, the main thing that Marnie wanted to talk to me about was trying to get Kayla to take zofran orally.  (Sigh. . . been there. .  .tried that)  If she would take it orally, we could cut down on hours of extra fluids that she is getting each week at her treatments.  Also, they would start to cut down on the steroid until she was off of it.  The steroid is great for nausea, but it has more long term side affects.  I am all for cutting that out, also cutting down the time that we spend at the clinic each week.  

So, we made a plan to just try to get Kayla to take zofran orally that morning before we started chemo.  Stephanie was in with Kayla pretending to take medicine, trying to get her warmed up.  When they ordered it, they found out that the pharmacy at the clinic doesn't carry liquid zofran.  I already knew that she wouldn't take the dissolvable tablet, so we were going to try the liquid.  So, the quickest way to get it was to call in a prescription for her at the hospital pharmacy and have me go and pick it up.  Again, I went in to Kayla and told her that I had to go and get something and that I'd be right back.  She could have cared less what I was doing--she was having fun with Miss Stephanie.  Nice.  So, I went and picked up the zofran, came back and we got it all ready.  As soon as she saw medicine, she completely shut down and refused to take it.  Sigh.  We tried just about everything and she would not take it.  

So, we gave up and ordered the IV zofran so we could get started with chemo.  Bummer.  Kayla ended up with the usual, zofran, dextrose and then more zofran at the end.  And lots of fluids.  

Kayla did have fun while we were there.  Playing music is the big favorite. :)  

We did A LOT of coloring.  That girl never gets tired of coloring.  We colored at the table, colored in bed while watching a movie and back and forth.

Jessica, another child life person, gave Kayla a necklace with beads to string.  Now, this is a very special necklace.  Each bead represents something that she has done.  Her name is in the middle on those little square beads.  Then she has beads for hospital stay, port insertion, surgeries, MRI, LP, one for each port access, one for each chemo treatment, and so on (there is a long list).  She will continue to get beads each week until she is done with treatment.  They were a little behind in getting her started with it so we had some catching up to do.  These are the beads that she has earned so far. . . and it completely filled up the necklace!  It is a nice way to keep track of everything and see it when we are all done in a more tangible way.

So, around 12:30PM or so, I asked Penny, the chemo nurse, what our time line was looking like (i.e.  how much longer??)  She told me that Kayla still had over an hour of fluids to go and then if I wanted her to get another dose of zofran before we go we'd have to wait until 4:15PM.  Ugh!  Someone had been a little sneaky over the past few treatments and had given her the second dose of zofran after 4 hours (which was very nice), but Marnie corrected that and said they had to be given 6 hours apart.  I  knew that I would not be able to get Kayla to take it at home and that she would wake up throwing up if she didn't get that second dose, so we waited around for 4:15PM . . .

Of course, on the way home we were getting into the beginnings of rush hour traffic and then there was a truck that lost a bunch of bags of something that spilled all over the freeway that brought us to a dead stop and then a crawl for awhile, so it was after 5PM when we got home.

It was a very, very long day.  I REALLY want Kayla to start taking zofran orally.  We are going to have to work on that this week. . .