Our Visits to the Clinic

For this next post, I thought I would combine our last three visits to the MSTI clinic where she gets her treatments.  They were all pretty similar.

First of all, we have to put the numbing cream on her port two hours before our appointment time.  Our appointment is at 8:30AM, so at 6:30AM, I get up, put a large amount of cream in the middle of a square of Glad Press and Seal and put tape around the edges of the wrap.  Bryson helps to hold her down and I put the whole thing on as quickly as possible.  It is cold to her and she doesn't like being woken up that way--and I don't blame her!

We get Nathan and Lily on the bus at 7:10AM and then quickly get everything ready to go.  We drop Benson off at a friend's house and try to be on the road by 7:45AM.  We have to go to downtown Boise, right next to St. Luke's, so it takes a good 45 minutes with the morning traffic.

When we get there, we check in and wait to be called back.  The nurse takes her blood pressure and weight (by her weight, I mean I hold her and stand on the scale and then Bryson holds her while I get weighed so they can get her weight).  On our first visit, she would not let go of me and screamed the whole time I was getting weighed.  She did much better the next two times, but I still have to hold her.  They have yet to get her height--she will not stand next to the wall, so I just tell them her height from the hospital the one time we were able to get it.

Then we go back into the waiting room until another nurse calls us back.  This time they take us back to access her port.  This is still a big struggle.  Kayla holds on to me soooooo tight that I can hardly turn her around so her chest is facing them.  Bryson has to hold her legs down as she tries to kick, I try to keep her arms around my neck so the nurses can lift up her shirt, take off the Press and Seal and tape, wipe off the cream, and stick a needle into her port that is attached to tubes which they then secure with a huge square of tape (by the way, aside from medicine, tape is her next biggest dislike) - the tubes then connect to the IV that is on a pole with wheels so she can get around.  Whew.  The first couple times were especially ear piercing. . . Kayla has a very high-pitched scream.  This last time was a little better.  She still cried, but several of the nurses out in the hallway commented on how well she had done because they hadn't heard her screaming.

After that whole ordeal, she gets a gold token to put in a little machine to get a toy.

Next, we got in to meet with either the doctor or nurse practitioner.  They (try to) examine her, ask us questions, we ask them questions, etc.  This is where Dr. Hanson told us about the other options to Septra.  There is a breathing treatment that she could do once a month of Pentamadine (I am probably wrong on the name and the spelling, but it is something like that).  This would mean putting a mask on her and having her breath in air that puts a horrible taste in her mouth for 5 minutes.  Yeah. . . right.   The other option is an IV form of Pentamadine.  Ding ding!  The only major downside to this is that it is the LEAST effective method to prevent the pneumonia. . . BUT, it is better than nothing and since she is getting nothing, we are going to start with that.

After our meeting there, we go into the chemotherapy suite (nice name, huh?)  and get all settled into a little corner with a bed, TV and a couple of chairs.  They have a cupboard full of movies, a music lady who comes and shares her cool instruments, a Child Life specialist who brings crafts for Kayla to do and makes sure we have what we need.  She gets to order lunch, which is usually Mac n Cheese, grapes, and root beer.  And then we just sit and wait and try to keep her entertained.

When we come each week, I feel like I am packing up half the house. :)  First, I am trying to bring things that will keep her busy and entertained all day, then I am packing food to last all day for a hungry pregnant lady and her hubby.  Plus, Kayla seems to be hungry all day on these days, too.  She ends up going through all my food before we are even halfway done.  So, by the end of the day, we are pretty much just tired and hungry.

In the meantime, another nurse comes every now and then to change her  IV from fluids to each of the two chemo drugs and then back to  more fluids.  Oh, and they always give her IV Zofran at the beginning and at the end (which means we have to be there for 6 hours in between doses).

On our first visit, they just gave her the initial dose of Zofran and we went home when her fluids were all done.  But, she woke up throwing up at 4AM the next morning and was going strong until noon.  I almost had to bring her back into the clinic to get hooked up again and get IV Zofran, because, of course, she would rather be throwing up than take a tiny little dissolvable tablet.  I did put one in the middle of a Starburst and gave it to her.  She chewed it for a few seconds until she realized it tasted bad and ran for the garbage can.  I tried to block her and then she just spit it out on the floor.  I think she got a little bit of it in her, though, because she stopped throwing up after that.

So, on the following two visits, we made sure to stay long enough to get a second dose of Zofran through her IV.  She seems to do fine with two doses.

It is normally around 3:30PM when we are finally leaving the clinic to head home.  What a day!  This will be what every Thursday is like for the next. . . 56 weeks.