Well I got to do my exciting things and I had quite a bit of fun! My picture was on the cover of the St. Pete Times today!
The article was about the new hospital. There were only two sentences about me, which is to be expected. However those two sentences were, "Fifteen-year-old (Miss E.) is a prime example. She has been coming to All Children's from her home in
Lecanto for almost a decade, after being diagnosed with kidney cancer as a child. She's now cancer-free, but needs weekly treatments to strengthen her battered immune system." So, they got their facts a bit wrong... I am "cancer-free", but I do not need weekly treatments to "strengthen my battered immune system". And they put NOTHING in there about me getting a bone marrow transplant, which is the total reason I am cancer free. Ugh! I don't think people realize what a big deal transplants are, in my opinion it is a lot bigger fuss to get a diagnosis involving a BMT than cancer, but that's just my opinion. I can see why they used the cancer thing though, more people can relate to that.
So that was the St. Pete Times part of Friday. Right after that CatWoman and Marshmallow came in and turned me into a dog. See? Aren't I the cutest!
Marshmallow came in with his camera and hooked up a mic to me and recorded my voice, the voice of Resi (pronounced reh-see) , the therapy dog. I read through the script once and that was it, I must have either done a very good job or they are really able to edit audio a lot, probably some of both. Resi is the star of the Hospital Moving Day video that CatWoman, Peter Pan and Marshmallow are making for the patients to explain how moving day is going to go. The therapy dogs make up the cast of the video and Resi narrates it. Mom and I speculated that my voice was chosen because it is still a little kid voice in sound but annunciates pronounces like an older person. CatWoman and Marshmallow just say its because my voice is darling. Well, I can't help it if I'm adorable. All Children's Hospital makes it's big move on December 12th. I won't be able to attend moving day as a volunteer because there are way too many germs, but that's okay because I probably wouldn't have enough energy to be of any help anyway.
CatWoman and Marshmallow left and shortly after that Mom went to meet Walski for lunch and left me to take a nap. I was startled awake by my dear sweet Patch who burst into my room saying, "Miss! Look at your creatinine! Oh, are you sleeping? I wanted you to know your creatinine is 1.9!" I was all in a fuzzle because of being woken so but hear myself saying, "Oh really? That's something because my IVs didn't work right last night and I only got 500cc's of fluid." Patch said something along the lines of, "Really? I'll be back shortly." and she left.
STOP! It is time to go to Miss E.'s school of medicalness and code-names. We'll start with code-name education. CatWoman is the media lady of All Children's Hospital who loves cats. I am the godmother of her felines in the tragic event that her and her husband perish. Marshmallow is the moving picture man and a marshmallow. He thinks that kids are pure sweetness and makes for a very gullible victim in a prank, and you can do anything and he will forgive you because he is a marshmallow. He also tears up a lot when filming things. Peter Pan is the idea person/still picture man/cartoonist/anything else he wants to be. He is named Peter Pan because he is forever a boy having fun. Walski is super top secret, but recently ran the New York Marathon with my name on her shirt and she took me over the finish line. Which was awesome. And Patch is my darling doctor.
Now for medical school. Every night I get IV fluids to help my creatinine. Creatinine is a number that indicates your kidney function level. A good number would be between 0.5 and 1. My creatinine is usually always above 2 which is not a good number. It means that your kidney is not filtering all it needs to out of your blood. I have BK nephritis which basically means that the BK virus is giving my kidney boo-boos, and the IV fluids help my kidney work better even with the BK virus beating it up. Oh and "cc" means milliliter, 500cc is half a liter.
So Patch was really excited on Friday about my creatinine being a good number (for me because my number is usually around 2.8) and when she came back and Mom was back and I was awake we started to talk about possibilities. Mom and I very successfully refrained from getting excited. We've let ourselves get excited before only to be so horribly disappointed, but Patch was getting excited. She said to do only 500cc daily until next clinic appointment and then we'll see what the creatinine is again, if it is still under 2 we would try without fluid. If it still stays good even then we will take out my mid-line and we won't put another port in.
So I have been sleeping at night without my IV pole, I've been able to move around without the limitations that the IV pole presents to me. It has been sooo nice! Awesome! If I let my imagination go, it leads to a summer with no line in my body, and that leads to swimming. I haven't been able to swim in 2 years, and it was the only sport I ever felt good at. I really enjoyed swimming and have missed it terribly. I will not let my imagination go far though, I don't want to be disappointed, so right now I'm just being very happy with my freedom from the pole.
Okay, I'm going to wrap this up, because it is getting long... Brother lost his soccer game yesterday 5-1, in my opinion a lot of it was the goalie's fault. He was not even trying. Today is Sunday and the family is watching football, my cousin is on the phone with me right now and I'm very distracted. I probably will not be able to write a quality post if I keep on. So I must end here.
Love, Miss E.