Sunday, January 31, 2010

I'm Unpredictable

Dear Reader,

It has been almost a week since I have written last. I hope you didn't think anything had happened to me, because I'm fine.

My donor and I have been emailing back and fourth quite a bit. It is so great! I already have 4 emails from him! He is very nice and sweet and I like him very much. Before I get on to talking about him too much though, I will tell you a bit about what I've been up to this week.
Last Tuesday was my big day at the hospital. I didn't even end up going to the "clinic" that I usually go to because everything is new. They have a new building called the "OCC" which stands for Out-patient Care Clinic (or Center, I'm not sure).

I went to the pulmonary place in the OCC and I went to the Infusion Clinic. I didn't get to see Agent 99 at all because she works in "Hematology" in the bone marrow part, not in the Infusion Clinic. I had new people.

I like old people.

These new people were alright though. The nurse who did my IV did AWESOME, an absolutely wonderful job. She was the one who checked me in and hooked up my IVIG. After telling her all the medication I take (and nearly all the amounts), and asking her why a T&B-Cell Numeration wasn't included in my labs, she told me she had never experienced any patient like me before and that she was very impressed. When Patch came in later, the nurse told her that I had blown her away.

Oh please! Your too kind!

Most of the day I slept there at the infusion clinic. Polly did come by to visit, but I slept through her. They give me medicine that makes me sleep on IVIG days. One of the Moms of the Family Advisory Council came to visit too, but I slept through her as well.

When I got my blood results back they were pretty much what they normally are for me, except for the creatinine (kidney function number). It was 2.58. This is a very good number for me and Mom and Patch were impressed. I haven't been on any IV fluids at night now for about a month and my creatinine was actually good. WOW.

You should note that a good creatinine for a normal person is actually between 0.5 and 1. However, my creatinine runs high due to the BK virus attacking my kidney. We think the BK nephritis (Kidney-sickness caused by BK virus) may have caused permanent damage, so that's why 2.5 is good for me.

I also did the Family Centered Rounds project for the Family Advisory Council that day, but it wasn't as exciting as I thought. I did really enjoy seeing my friend HawkMan though.

Oh! And before I forget, I've been meaning to tell you this, if you ever stop by All Children's Hospital in St. Petersburg, Florida, please make sure to pick up a welcome packet and open it. There is a surprise in the inside cover.

Back to my week, Friday I went to Orlando to do the commercial for Florida Virtual School (FLVS). I learned that only 16 students out of the whole school were "selected" to be in it. So it is a big honor.
The FLVS media people are very different than CatWoman, Marshmallow and Peter Pan at All Children's. They are so stiff and didn't seem to be used to working with kids at all. I thought that was really weird considering they are a school, but I let it go because they had been at it all day long and FLVS is a "virtual school". These people are nerds. Nerds have been known to lack social skills.

First the FLVS people took me into a room and had me say some lines. Some of them I thought were funny because they were exaggerations of the truth, or matters of opinion, not really facts about the school. That's okay though because during my interview, when I got to choose my own words, all I said was the truth and the facts as I see them.

One lady told me that none of the other kids that they had interviewed so far had responded to the questions like I did. Or rather she said that, "The other kids all just said what we wanted them to say, but you just told it like it is. I like that about you."

I was actually a bit worried about how I did, and was talking to Mom about it in the van on the way home.

When I was being interviewed, the majority of the crew was out in the hall watching me through a glass door, they had me faced so I could see them out of the corner of my eye if I wanted, but I tried not to look at them. They laughed at me the whole time I was being interviewed, everything I said was hilarious, and I kept hearing through the door "She's so cute! She's so cute!"

The people in the room with me (the camera-men, audio-man, and interviewer) were fighting laughter for a lot of my interview too. The camera girl was bent with her face hidden behind her camera and her body was shaking with giggles.

This would all be good, except I wasn't making jokes or goofing around. I was answering the questions, and being myself.

So, this is why I was a bit worried about it all. I obviously didn't say what they expected me to, but the organizer lady said that they are going to use everyone. I'm very interested to see what they will use of me.

I didn't say anything mean, I was just candid. It was about virtual school. Mom said that I was telling the truth, but it was obvious from the way it was "laced with insults" that I really wanted to go to a traditional public school. Oh well, I do want to go to a traditional public school, very much, and I didn't intentionally lace anything with insults.

When they get the video all done and polished up they are going to send us a copy. I'm thinking that there will be a copy you can watch online too, and when that becomes available I'll be sure to post a link.

I've really written more than I thought I would, I better sign off now. I may write a thoughtful post tomorrow.

Love, Miss E.


  1. Sounds like you are doing very well. So glad the creatinine is down and that you enjoyed making a commercial. I enjoy yours posting, thank you for taking the time to send them.

    A huge thank you to your donor who may be reading this. You saved a fantastic persons life. You are our hero!

  2. The reason we were all holding back laughter was not because you looked or acted funny at all, but because you were totally honest. It was refreshing and undoubtedly unexpected!

    The title of your blog post is very appropriate. It was awesome to meet you and very fun to be your interviewer. I hope you enjoyed it as much as we did.

    We wish you the best of luck and will be sending along a copy for you as soon as we can!

  3. Hi Interviewer! I'm so glad you all enjoyed me! I did really enjoy doing the interview. Thank you for commenting on my blog!

  4. If your donor is reading this we would like to second what #1 Fan said. We met Miss E almost 3 years ago when our daughter was diagnosed with leukemia. Miss E is one of a kind! Thank you for saving her life!

    As for your commercial. Why am I not surprised? Your wit and sense of humor are always refreshing.