Jordyn's Journey to Triumph Over ALL (Acute Lymphoblastic Leukemia)

Sunday, August 25, 2013

August Clinic

Last Thursday at clinic was a LONG day... It was the first 6 hour plus hospital day we have had in a LONG time. The nurse couldn't get Jordyn's port to draw back blood, so they had to order some tpa(declotting med to get central lines working again) to get it working. The doctor talked with us and is concerned that she isn't getting the dose of chemo that he feels comfortable with, and would really like her to be getting more. The reason she is not is because her immune system tends to crash on higher doses. The oncologist suggested we try a different antibiotic because Septra (the antibiotic that she is usually on) can apparently suppress the immune system, and he thinks that might be why her counts have been so low. So we decided to try it, and we shall see, I guess. Jordyn's doctor makes sure he lets us know every time how good of a job we must be doing with the sunscreen, I guess a lot of kids come in burnt this time of the year, but we make sure to slather Jordyn up with sunscreen most of the time. We went to the infusion room and waited and waited. They ended up sending us down to RTU (Rapid Treatment Unit) before she got her tpa so that we wouldn't be late for our appointment for her lumbar puncture. We got settled in a room down there, and then they told us they were going to send us back upstairs because they were running behind and they wanted to get her tpa going while she waited. So we went back upstairs and got the tpa going and then waited for about 45 minutes for it to get her line working, and then we sent her blood work off, and went back downstairs to finally get her spinal tap chemo. We waited about 20-30 minutes to get her in. She woke up happy because she had the RTU's ipad still and was able to finish playing the games she played when she went to sleep. She really fought going to sleep. Usually the medicine takes her out pretty fast, but this time she fought it for like a minute and even when we finally got her to lay down, she was still trying to pop back up. It was strange to see her not just go out like the flip of a switch like usual. She asked for mac and cheese when she woke up, which they thankfully had. We went back upstairs for her iv chemo and for her iv antibiotic that we are trying out this month to see how her counts react to it. The iv chemo is just a push over 1 minute, but the antibiotic had to run on an iv pump over an hour.

We just arrived at clinic..

Here she is making an egg creature to pass some time while we wait

Jordyn was able to sit in the stroller to get her blood pressure taken this time. She liked that.

Getting weighed here, she is staying about the same weight wise, so the doctor is happy about that.

She is getting taller!

I am loving her hair and thicker eyelashes!

She loved to make silly faces at me this time at clinic.

I had to take a shot of the back of her head to show her gorgeous curls she has!

Jordyn and her doctor.

Jordyn and the child life specialist making purple snow

Here Jordyn is in the elevator playing with her purple snow on the way down to RTU.

Here we are waiting to go into the sedation room to get her lp done.

Here Jordyn is with Roxy the therapy dog. We get to see her at clinic occasionally and sometimes she even dances for Jordyn!

Love that they both have their tongues out! Lol!

July Clinic - Playing blog catch up...

This is the most behind I think I have ever been on the blog... My apologies! I have been making sure I get pictures to record what is going on, but I guess I have let life get in the way of posting on the blog... I am going to try to catch up today hopefully...

The clinic before July they had run a test on Jordyn's blood to see if it had an enzyme that made her extra sensitive to the methotrexate she takes on Thursday's. They have tested for two different things before, I think, and it came back that she didn't have that enzyme that made her sensitive to it, but she still seems to be have her immune system more suppressed than the doctor wants. He would feel better if she was on a little higher dose of her chemo.