Yesterday was a clinic day, we thought our appointment was at it's usual time, being 10:30/11ish. However, the secretary had scheduled us for 1:30 and didn't tell us. So we got there two and a half hours early. This actually worked out for us because we got to visit my dear friend Polly.
Polly is so named after Mary Phelps Jacob. Mary Phelps Jacob was a woman and her friends called her "Polly". She is known for her invention of the brassiere. I named Polly after her because I hold her close to my heart, and she always gives me tons of support. If I'm ever down or feeling unconfident for some strange reason, Polly always lifts me up and gives me the boost I need to hold my head up high. Polly recently lost a child, a baby, a little girl named Prayer. Prayer was born under unhealthy circumstances and was very very sick. She had to be on machines and loads of medicine to keep her a live. A week after she was born, she was taken off of her machines and God took her home. This happened only a month ago. This was our first time seeing Polly since Prayer went. She's been at home with her 2 year old daughter, Celine Dion (who loves to sing), and her husband, Blaze (who works as a firefighter).
We got to see everyone, Polly, Blaze and Celine and even the dog. We stayed for about an hour and it was a very nice visit, we always have a nice time visiting Polly and Celine. Polly is working on healing. I recently read a blog by The Bearded One that described the coping of loosing a loved one. He said in his blog that when a loved one is lost it shatters us, smashes us beyond repair. He described the coping of loosing one loved as "rebuilding", you use your smashed up pieces to rebuild yourself. I think that Polly is a great construction worker. She is using all the best pieces of herself and all the best pieces of Prayer. I know that it is hard work, being a construction worker, but that master piece is going to be gorgeous.
When I got done visiting Polly I went back to clinic. My regular nurse, Agent 99, was not there. I had to get stuck by a different nurse, we will call her Agent 100. She is the boss nurse at clinic. I had never had her stick me before and I don't really like people I don't know sticking needles into my body. I thought that Agent 100 would be okay though, she was the boss nurse after all. So I was feeling pretty comfortable until Agent 100 tripped over the tray (there is a rolling tray that the nurses use to hold their stabbing paraphernalia). Oh great! A klutz! So then, I said teasingly, "Uhhh, I don't know if I want you to stick me."
"Oh, the tray was just in the way!"
So then Mom started talking about masks. Walski was visiting us at this time and I think Mom was trying to get her mind off of the needle. Walski isn't as used to things like needles as we are. I have a medi-port in my chest that we leaved access all the time because I get IV fluids every night to help my kidney function, every week my needle needs to be changed. Agent 100 is wearing a mask so she doesn't breathe germs onto my designated access point. So then the nurse jumps into the mask conversation as she's waiting for the alcohol to dry up on my chest. "Oh!" she says, "I hate wearing these masks! I can't see a thing when I'm wearing them!"
"Oh! Great!" I say. I'm actually started to get nervous now. There is a clumsy blind nurse with a needle in her hand and it is aimed right at me! However, I hold still, the nurse stabs and she gets it the first time. What a relief!
After that we got my labs, everything looked all right. My platelets were in the 90s. That isn't too great as a normal number would be over 150. However, I have Idiopathic Thrombocytopenic Purpura (ITP), which means that my body attaches anti-bodies to my platelets for some reason. Anti-bodies work like bombs, so for someone who is getting their platelets blown up constantly, 90 isn't such a bad number.
My creatinine (kidney function) was very high. It has gone up a whole point since I was in the hospital. This is not good at all. It was 2.89 at clinic and it was about 1.9 at the hospital. A normal number for creatinine is about 0.5-1. The BK virus is attacking my only kidney and causing "BK nephritis". I might have permanent kidney damage because of it. I'm supposed to drink a lot and I'm on IV fluids every night to help. I also take this drug called Leflonomide that is supposed to kill the BK. It is a very new drug though and they don't really use it in pediatric post bone marrow patients, so I'm kind of like a lab rat. I'm an awesome lab rat though!
That was pretty much it for yesterday. Today my home bound teacher came for the first time this year. Her name is Rosetta Stone. She is named after the actual Rosetta Stone. It is a stone that is covered in hieroglyphs, it is currently on display at The British Museum. For a long time nobody knew what the Rosetta Stone said, it was a big rock that carried a bunch of mysterious information. So it is a good name for my teacher, she's just a big ol' rock full of stuff for me to learn.
Rosetta is my teacher for World Geography and English. I'm going to start reading "To Kill a Mocking Bird" soon. She gave me a vocabulary book and some geography papers. I'm supposed to try to use my vocabulary words in this blog, but I didn't bother this time. There are some good words on there though, so look forward to seeing some in the future.
I'm still trying to get caught up in school as my 2 week stay at the hospital set me back a bit. I also added a new self taught class to my school schedule called Blogology. I have to put it on the back burner but I'm kind of enjoying studying blogs. It is very difficult for me to find a blog that I really like. If you have any you'd like to recomend please post them. There is a place that says comment at the bottom of each post, to make a comment, simply click on that word.
Your, Miss E.