Tuesday, December 29, 2009

The Indiana Surprise! (Part 3, Good or Evil?)

Dear Reader,

My time-traveling journey is almost complete. This is Part 3. I'm thinking there is only going to be 4 parts. It was a big trip to Indiana, and like I said, lots happened. If you missed Part 2, you can read it HERE. If you missed Part 1, there is a link to it from Part 2.

So I was saying, it was Sunday afternoon (the 20th) and we were going to leave that day. We (being my family and I) were all hanging out at the Proud House and enjoying each other's company when the Preacher Man walked in.

I was sitting on the couch and he walked in the back door. I could tell who it was right away. He had a loud voice and had a (what my mom would call) "home boy" way about him. My mom defines a "home boy" as a male who acts like he's from your home, or grew up with you. Brother would be my home boy by Mom's definition.

Anyway, judging by his voice and word choices, and the way everyone interacting with him and seeing him sounded, I estimated him to be a guy with one of those round bellies that hang over your belt a bit and not extremely tall. This man probably enjoys a beer every now and then and I wouldn't be surprised if he likes to play with cars. His head is probably bald right on top with hair on the back and near his ears, but not on his forehead. He wears good long lasting shoes and he eats a lot of left-overs. He is probably dressed kind of nice, seeing as he supposedly just came from church. He's definitely someone who gets excited, jolly like, and he has big hands made especially for engulfing the heads of children and helping ladies carry things.

That's all I'm able to get without seeing him.

I get up off the couch and go to meet him and say hi. He is here to see me after all, plus, I'm a polite kind of person.

I was pretty much right about how he looked, except he wasn't dressed as nice as I thought he would be. He had on a really old sweat-shirt that probably used to be black but the color faded so much it wasn't really anymore, and jeans. I didn't look at his shoes, that would show lack of confidence on my part, and his head was bald just like I thought. His hands were shaking mine and they were the large kind that swallow the heads of children and help ladies carry things, just as I had suspected.

He smiled and was happy to see me, excited and jolly, like I had guessed. My Dad, Mom, Grannee, and I exchanged pleasantries with him and before I knew it my Dad had pulled out a chair from the dining room table, faced it towards the Preacher Man, and I was sitting in it.

I was on the spot and it was time to pray.

I managed to glance beyond the Preacher Man to my Proud Aunt (or Proud Woman, as referred to earlier). She smiled at me and I couldn't figure out what kind of smile it was, and I still can't, but I think it helped me.

The Preacher Man started to talk. He talked very intensely. He was leaning down a bit so he was right in my face and his eyes were staring into mine as though he was trying to control my mind with them. I started back with what I hope/think were calm, relaxed, and even cool eyes.

The man was definitely still the excited Man I thought him to be, but if it weren't for the smile I would doubt the jolly-ness.

"So, you're sick. And you want to be healed don't you?" The Preacher Man says with his loud voice.

I knew you wouldn't understand. Everyone thinks I'm sick. I'm not sick! Ahhh! I'm just waiting for my T-Cells to grow and mature! There is no more 'sickness'. The day my new bone marrow took, all the sickness was gone. I am healed. I'm just waiting for T-Cell function, for God's time. I'm not sick. And I'm not in denial either! "No. I'm not sick anymore. I'm just waiting for my T-Cells to grow." I reply very calmly (and a little slowly) as though I am talking to a child. Usually when people show this amount of ignorance I lash out a full dose of Miss E.-ness and the person to whom I am talking to ends up learning a TON of new medical terminology, or they end up with a kind of "duh" expression... either way it usually results in laughs, but I was trying to be especially good.

Mom jumps in immediately after to explain the words I had just uttered. I am very thankful for this because it helps show that I am not intending to be a brat or be sassy.

"Oh." says the Preacher Man "But, you still have Leukemia." He states this but there is uncertainty in his eyes.

Now I feel sorry for the guy. I know there is no way he could understand because none of my family up there does, but you can tell he feels a bit left out, misinformed.

I gently shake my head as though not wanting to disappoint him and hear Mom echo me, "No, that's all gone now." Again thankful for her because I fear I might be getting a rather smug bratty shadow of a smile on my face, and I really DO NOT want to be a brat. Not to a holy man.

"Okay. Well somethings wrong with you! There's something inside of you." He tells me this while his mouth wears a slightly insane grin, his hands out to me, pleading. He is desperate.

I do not want to talk. I am determined to be very good. I look at the floor for a second, I was right about the shoes. Then Mom, always the hero, says, "Well, she is waiting for her T-Cells to grow."

"Well! We'll go with that then!" He says clapping his hands together, somewhat relieved.

That obstacle overcome, he tries to start again.

"So, that thing, what ever is inside of you. You want it to be gone right? You want to be healed." He expects me to confirm this, but I don't.

Instead, I smile and say, "I want what God wants for me." Which is 100% the truth. I've been there, I've done that. I've asked, 'Why can't I get better already?', 'I've been sick for so long.', 'I don't know how much more I can handle.', 'I want to feel good, I just want to go to school.' I've had really long tear-filled conversations with God on this topic and I know what I want now, and it isn't to get better. I don't want that if it isn't part of the plan for me. All I want is to follow the path and not to mess up. Like I said, I want to be good.

I hear Grannee's voice say, "Perfect answer." in my ear. So again, I am reassured that I am not being a brat. Which is good because I am so sure that everything I say is making me look more like one.

"Good!" Is what the Preacher Man says, "So you want to be healed!" Okay, that is not what I said, but he isn't going to wait for me to give him any cheek or pose any argument. He is just going to continue, and I am not going to interrupt. "And you believe that you are going to be healed?" Here he stops for my reply. However, Mom answers for me again. I think she somehow has a sense of the impression I am trying not to make and intends to rescue me.

"She believes she already is healed." Mom says.

The poor man can't catch a break! "Alrighty then! Lets get started!" He says with clapping his hands together with enthusiasm.

"Lord Jesus," he starts with, "Lord Jesus, you said that if you believe it shall be done. And Lord we believe. Yes, Lord we believe...." Then he goes on for not even half a sentence when all the sudden he is saying, "Lord take this evil out of this girl! Take out the sickness and evil! This evil that is inside of her! Take it! Take it Lord and cast it down to hell!"

'HOLY CRAP I'M GETTING EXORCISED!' Those were my exact panicked thoughts. I know, my mind has such a potty mouth. Anyway, I'm freaking out and I didn't really hear much else of what he was saying because I was stuck on that, "take this evil out of this girl!" business.


Evil? I have evil inside of me?
I mean I know I was a little ornery sometimes, maybe a little bit mischievous in my younger days. "Brother did it!", "Baby! You shouldn't fart like that!" I know, but I was just a little kid. I never thought of myself as evil. I don't think I ever did anything evil. In fact I thought of myself as a pretty good kid. Some people would even call me the perfect child.
I don't think that being sick is bad either. I mean good things can come from it if you let them. You can make it bad if you want but it can go the other way. Something that I like to think I had accomplished.

Mother Goose has expressed to me many times that all of my #2 Fans have become better people because of their whole experience. Not just the sickness, but the experiences that came with it. Like meeting me, something that would have never happened if the Swain Princess hadn't gotten sick. They say that their lives have actually gotten better because of it.

Imagine that? Your life improving because of something evil?

That's the thing. People that have taken their sickness and let it change them for the better can't imagine their lives without it, and in the end, they are so thankful that it happened to them. They are thankful that they became such beautiful people. Maybe you used to be an ugly duckling, but then something happened in your life that made you and even the people around you into beautiful Swain-like Princesses.... Or Princes, for our male readers. How can that thing be evil?

More so, how can that evil be in me? Could I really have all that evil in me without me even knowing it? I don't think I did anything worthy of being called evil. I mean watch the news, there is tons of evil stuff... Sickness isn't bad.

I snapped in and out of my thoughts to catch glimpses of what the Preacher Man was saying. I did this enough to know he meant everything he said with good intentions, but telling someone that evil lives in them is kind of like telling someone that they are ugly. You can say it as nice as you want, but it still doesn't make them feel good. However I was able to very easily forgive the man for his accusations, because it was very evident that he did everything he did with love.

So, that was all good. However when the Preacher Man left and everyone settled bad down, I did start to sense something bad, and I sensed it with my nose.

End of Part 3

Monday, December 28, 2009

The Indiana Surprise! (Part 2)

Dear Reader,

I know it is taking me a while to post "Part 2" but it is Christmas time and I have been very busy. So, I'm going to continue my time traveling and post "Part 2" of my trip to Indiana now.

If you missed Part 1, you can read it HERE.

We left off my trip last Saturday, the 19th. Everyone except for me and my dad was at the family Christmas party. Dad and I decided to watch a rather stupid movie called, "The Spirit". It is Dad's kind of movie. I was getting very hungry. I hadn't been eating very much during the trip because I was still on the low-microbial diet. So, Dad and I started to make Mung Bean.

I was starvingly hungry when Mom called and said to "Get Ready!" Her and Grannee were on their way back from the party to take us to see Christmas lights. When they got to the house, I grabbed a banana and some water and got in the van. We went to Puluski to see the lights, I sat in the back of Grannee's van with my cousin. She is my only Young Cousin, so that is her code-name. The Young Cousin (who is 10 years old by the way, to be 11 on Jan. 20) was going to spend the night at Grannee's house that night.

The lights were great, but I was glad to get back to the Mung Bean. I downed 3 bowls of the stuff and it was good!

When I was done eating Mung Bean, me and my Young Cousin went outside with Piggy to play in the snow. It was the perfect snow, a "Southern Snow" as my Grannee called it. We made a snowman, I have a picture, but I was unable to download it. This is a major bummer, because that picture was supposed to be the substance of my Part 2 post. Playing in the snow was really great and very fun, snow is really very fascinating.

Piggy loved playing in the snow. She ran around and hopped in it, she tried to catch snowballs in her mouth. She even licked it. Her tennis ball quickly got coated in ice and was extremely slippery and she was unable to hold it in her mouth without it moving, this she found very frustrating and exciting and only made her chase it more.

We both loved the snow that night.

The next morning was Sunday. I got up at around 10. I was instructed to stay in my pajamas and "act sick." My Grannee's Preacher was supposed to come over after church and pray for me. I would be allowed to get dressed when he left.

The Proud Man and The Young Uncle (the Young Cousin's dad) came over and helped us wait for the Preacher Man. We waited and waited for the guy. I showed my uncles my driver's permit and my debit card from my checking account (that I opened myself with my money). Mom got out pictures from my birthday party to show my uncles and my cousin. They hadn't seen Uncle BM or Cousin Gorilla for a long while so they enjoyed the pictures. There were also some pictures of Polly and Celine Dion in there because they came to my party too.

By the way, Polly, my Young Uncle thinks your a hottie and was wondering if you were single. He's a divorcee.
Sorry. I know he's cute, but Grannee told him that you were married to a big huge strong firefighter who could snap him in two if he wanted. However, Mom was quick to mention that you had a single sister.

I'm not really sure what time church was over, but when the clock turned 1 and we were all thinking, "Well, I guess he's not coming." or "Must have changed his mind." I was allowed to get dressed.

We were going to leave that day. We got ready and packed and then all went over to the Proud House to spend our last couple hours watching football and eating things. The Proud Woman gave me my birthday gift and we were all hanging out and just enjoying each other's company, when the Preacher walked in........

"End of Part 2"

Wednesday, December 23, 2009

The Indiana Surprise!

Dear Reader,

I know it has been a very long time since I last wrote, and I apologize for that. I have been really very busy. In fact, I have been so busy that I'm not going to be able to tell you everything I've been up to in one post. So, in order to fill you in, I'm going to have to use a very high tech method. I'm going to post all the events in parts and........ I'm going to time travel.

We will go back in time to the day of Thursday, December 17th, 2009. We spent all day finishing packing and getting ready to leave for Indiana. We had told as little people as humanly possible about this trip. We were going to surprise my grannee. Mom, Dad, Me, Brother, Piggy and Baby left the safety of our home that night at 10:00pm and started on the way to the little town of Francesville, Indiana, home of my grannee and my Proud Relatives.

We drove through the night. Brother and I spent nearly the whole trip sleeping. Mom called Grannee when we were about 20 miles away from her house.
-Please excuse the dialogue I am about to post as I could only really hear one end of this phone conversation-

"Hi Mom!"

"Hellooo." I imagine this was my Grannee's response, she usually does this in a very sing-song voice.

"They told me that my packages are going to arrive at your house sometime today."

"Well, I'm at the post office mailing your gifts right now, and there's nothing for me."

"Oh!" Says my mom, with a kind of smile on edge of giggle on her face mixed in with a kind of crazy 'Keep it under control or you'll get caught! You mischievous little girl!' look "You're at the post office? Well, that's weird, they told me that they would arrive today. Maybe they are going to come later."

"Maybe."

"Are you alright? You sound like you have a cold." This statement causes panic to arise in both me and my father. Brother however is completely absorbed in the book 'The Hunger Games' and wouldn't know it if you had cut off his left big toe.

"Are you alright? You sound {murmur, bumble, unintelligible noise}"

"Are you alright, Mom? You sound like you're sick."

"blah blah, goo-goo-gaa-gaa"

"Must be the connection. We must be in a bad spot. I'll talk to you later."

~Hang up~

Then Dad, ever the dramatic, starts to express that "If your Mom is sick! This whole trip was a waste of time." kind of talk. Mom says that they both had a hard time hearing each other and she wasn't sure what she was saying. I strongly stick with the, "It was a bad connection. They couldn't hear anything." story, and Brother is off in the Games fighting Cato in the arena.

Anyway we finally get there. I put on my mask in case Grannee is sick and we surprise her at her front door.
She didn't scream and cry like they do on TV, but I could tell by the dust rag in her hand and the stuff scattered around her house that she was not expecting us, and that we did indeed surprise her.

Now, Francesville is a very small town. It is like a step back in time there. All the neighbors know each other, and the kids run around the neighborhood and ride their bikes and things. You can walk to the store and the library and everywhere. Francesville is planted right in middle of a bunch of corn fields, hidden from the world.

People do not lock their doors. Strangers have only ever broke in to someone's house when they were home once before and the people that were home shot and killed the intruders before they could say who they were. Turns out the bad guys were a couple of dudes who had broken out of prison from Mississippi or something. Nobody cared really, everyone else in town would have done the same thing.

My aunt (The Proud Woman) and my uncle (The Proud Man) live on the opposite side of town as my Grannee. You can walk to their house really easily, even if you are on chemo. It is less than a mile away. We weren't at Grannee's house for 10 minutes before the whole Proud Family knew that we had arrived, but at least we surprised Grannee.

The next day was the family Christmas party at my other aunt's (The Oldest Aunt) house. She lives in a place called Knox. I don't know much about Knox except that it isn't a safe place to go walking and has a koo-klux clan. I couldn't go to the party because The Oldest Aunt has grandkids who go to day-care and have lots of nasty little-kid germs that I can't be around. I heard it was pretty fun though, and that The Oldest Aunt was very surprised and had a TV worthy reaction full of tears.

While everyone else was out partying, Dad, the girls (being Baby and Piggy), and I stayed at Grannee's house. She wasn't as sick as we thought, by the way. Dad didn't go to the party because he is super paranoid. Even in Francesville, which in my opinion is one of the safest places on Earth, Dad doesn't like the thought of leaving his precious darling (and only) daughter at home 'alone'.

Grannee doesn't have a TV and if Dad had gone to the party, I could have entertained myself with the laptop that St. Nicolette gave me. However, Dad didn't go to the party, and he wanted something to do too. He is a smart guy now that I think about it. He had this all planned out.

Ever since I got that 'MacBook Pro' he has been wanting to get his little gadget lusting fingers on it, but I have been guarding it like a mother bear guards her cub. He purposely didn't bring his own laptop so he would have to use mine if he wanted to use one, with the excuse of "Why bring another laptop? If we need to use on, we can use Miss E.'s she is bringing hers." Anyway, he used his 'I'm your sweet darling daddy dearest' powers and asked me if he could use my laptop to write an exercise program. How could I say no?

Daddy on my Laptop and Piggy
Now that he's used mine, he keeps trying to thing of things that would justify him getting himself one just like it. I wouldn't be surprised if his laptop mysteriously gets left in the rain or accidentally gets mistaken for a dark chocolate cake and gets baked in the oven or something.


End of Part 1

Friday, December 11, 2009

Introducing Matilda

Dear Reader,


I went to clinic today and they almost had my bra put back on. My creatinine (kidney function number) was 3.2. Which is really high and not good at all. I had been off my IV fluids for about a week and was on 1 gram of Ciprofloxacin everyday. I had only been taking 500mg of Cipro everyday because it is hard on kidneys. However, since House was my doctor when I was in patient and not my darling Patch, my kidney wasn't considered as much as it would have been normally.


However, Patch knew that I had been drinking and labeled the extra Cipro as the culprit the moment she saw the number. So, I'm not taking it anymore, ever. I'm going to start Penicillin tomorrow instead.


I was really surprised by my bad kidney number. I wasn't expecting it. I had been experiencing lack of energy lately, but I didn't think it was because of a high creatinine. I thought that it was because of lack of sleep or maybe a decrease in my prednisone amount (I went from 10mg alternating with 12mg daily a couple weeks ago). I was leaning more towards sleep deprivation.


I haven't been sleeping very well because my mind has been so packed full of stuff. I think about Iron Man everyday, and earlier this week I learned that my friend, Matilda, has relapsed too.


Matilda was my roommate a long time ago, she was only 4 years old then. I was 11 or 12. She's 7 now. When I met her she was the smartest kid I had ever met, next to myself, of course. You could tell by how she communicated with people, and other things too, I suppose. She was already starting to sound out letters and read. That's why I named her Matilda.


She was a great room mate and we quickly became friends. We had little parties together that included ice-cream, teeny tiny spoons, and popcorn? maybe it was something else. We also played Barbie Beauty Shop. A fun game that we made. One of the nurses had told us how she used to color Barbie's Hair and I thought "What a good idea!" So, we got our hands on some Barbies, and child life (the toy/activity people at the hospital) hooked us up with some washable markers. Our nurse brought us barf buckets and soap to wash Barbie's hair and nails, and then we dyed her hair and painted her nails with the marker. Some times she got small tattoo jobs as well.


It was a lot of fun.


I read about her relapse on facebook two nights ago. When I read about it, I went to Mom's room and told her right away, so she could pray for her. Then I went back to my room and I sat on the floor and cried for about 30 minutes.


I'm not one to say that kids should never get sick. I'm not one of those people who say, "Oh! How can this happen to a child!" or "These things shouldn't happen to children!" I am a child who's been sick for most of her memory, I know that children are humans, just like adults. And with being a human, you have the right to the imperfections of humanity, such as sickness. It doesn't mean that I want kids to get sick, it just means tha

t I don't think that is is wrong. It is just part of being human.

I knew this would probably happen to Matilda. Her kind of cancer keeps coming back until it takes you out. The longest a person has been known to life that has had her kind of cancer is twenty years. Having said that and thinking that at the time, still the only words my brain could come up with were, "Not her." I just didn't want it to be her…


I wanted her to be the one that didn't make any sense.


So that was keeping me up. Then I started to think about Iron Man. How all his doctors just keep saying, "Its not good." How all he could move from the waist down was his left ankle and some toes because his tumors have crushed the nerves in his spine. Might be paralyzed for life.


I was up until about 2:30 that night. Me and Mom met in the living room at about 1:30, she couldn't sleep either. Her thoughts were full of them too. She took an non-non-drowsy allergy pill and her, Baby, and I tried to get to sleep on the couch. Mom had to leave eventually because she's old and can't get comfy enough on the couch, but Baby and I stayed. Baby stayed with me until I fell asleep.


Dogs are cool like that.


Anyway, then next day was Thursday and I felt pretty lousy. I was in and out of bed until 2:30pm napping. Mom even canceled my home-bound school so I could recover, and I did. By that night I was fine.


Then today was my clinic day. Mom bumped into the Swain Princess with a blanket and a barf bucket in the hallway, she has the flu. Which is a serious thing for her. I got to visit with a bunch of Hawks after clinic, it was really fun. I had an especially nice time talking to the very talkative 4-year-old hawk-let.


When I got home I found out that Iron Man's doctor told him that he might only ever be able to move those few toes and his ankle on his left side, and he didn't like it. He worked and worked until his big toe on his RIGHT side moved. Just like a real Iron Man.


Happy Hanukah,

Miss E.

Tuesday, December 8, 2009

Excited, Line-less and a Loser



Dear Reader,

I'm home now. I arrived yesterday night. I am very excited, actually I don't know that excited is the word, but I am very happy and I guess a bit giddy. Well, it is like this....

I am a happy, jolly, jubilant kind of person most of the time. I think some people see it as kind of dorky.

For example, when I was in the 7th grade and I went to school I attended a school pep rally. They sat the middle school in the bleachers in 3 columns. If you faced the bleachers, the 8th grade was on the left, the 7th grade in the middle, and the 6th grade on the right. I went with my REACH class, and sat (of course) next to the teacher. My class occupied the very front row of the bleachers, and when I looked to my left I saw right across from me in the very front row of the 6th graders, my brother! So, of course I started to try to get his attention, and when we made eye-contact I smiled a super smile, shouted, "Hi!!!" and waved to him with great enthusiasm. He acknowledged my kind greeting by my making an "L" with his index finger and thumb and placing it upon his forehead.

Anyway, that feeling that caused me to smile and wave with such great enthusiasm is what I am feeling now. I guess that would be excitement, right? I don't know. I'm feeling this feeling because I am, for the first time in over 5 years, without any kind of line inside my body.

I have no port, no mid-line, no broviac, no IV, no nothing. There is no rubber or metal or anything inside me right now.

Its kind of like a bra. You start wearing one pretty early on, and you get really used to it. It becomes a necessity. The girls feel right when secured in a good bra. When you take off your bra, you feel a certain loose freedom, maybe a little exposed, like you couldn't go out in public. However, the feeling is also kind of nice and definitely one you could get used to. That is how I feel now, bra-less. Bra-less and excited.

And naughty.

Sunday, December 6, 2009

I'm confused.

Dear Reader,

Yesterday House told me that the plan was for me to go home today. So, I might be going home today, but I might not be to. Nothing is set in stone for me really...

Anyway, the lab came into my room this morning at 6am to turn on my light and wake me up, oh and to draw my blood too. This lab lady did a little better though, she didn't use the super bright light and she used a nice voice. It is a big improvement from turning on all my lights and saying, "Its time to draw your labs!" with no effort at gentleness or quietness. She did a good job.

So I was up a bit early because of my lab draw. I went to use the facility after she left and when I got back in bed I thought I might like to check my email. So, I got out my iTouch that my #2 Fans got my for my birthday and went to town. The only new message was from facebook saying that I have a friend request from a girl I used to go to school with, so I got out of "mail" and went to facebook and accepted.

I was snooping around her facebook page, you know, checking it out. I hadn't seen the girl since two years ago in the 7th grade. I was reading her info, and well, it made me upset. So, that is why I'm on here and not sleeping.

In her info it basically tells her name, says she "took my first brath of polluted air in america" 14 years ago, currently lives in "this piece of crap they call a state, florida", and has a simple life that includes "guy troubles, parent troubles, sibling troubles..... the usual". I just found that upsetting.

After reading this, I turned off my toy and tried to go back to sleep, but was unsuccessful. I kept thinking about that girl and about Big Wig's son who is here on 2SW right now.

Big Wig is the mother of another transplant kid on the floor. Her son is older than me. She is code-named Big Wig because she likes big wigs and wants to wear them. Her son is here on the floor right now. He just got moved here from the ICU.

He got transplanted after me, so I'm farther post transplant than him. His donor was his brother though, and he was considerably farther along in recovery from his transplant than I was. He was already going and doing a lot of things, and had energy a lot of the time. He had two types of cancer before his BMT (bone marrow transplant). One was a solid tumor one and one was the kind that a BMT would cure.

I think I'll code-name him Iron Man. Last time he was in ICU he hadn't slept in so long, so they game him drugs to induce sleep. It made him have crazy dreams and apparently he was a contestant with his brother on an show where you compete to become the "iron man". Plus, I think he is really a real "iron man" of sorts, I mean he seems to have that air about him.

When we got to clinic the day I was admitted, Agent 99 asked us if we had talked to Big Wig recently. We said, "No. How is she? Is something wrong with Iron Man?" She told us that he was in the hospital, and we could ask Big Wig about it once we got here. Mom asked if it was good or not and by the way Agent 99 said, "No." you could tell that it wasn't.

Iron Man is on the floor now, they brought him up from the ICU a couple days ago. His solid tumors are back. They are on his spine and they are growing super duper fast. The medical professionals are saying that "It's not good." Its the kind of not good that has the nurses tearing up in the hallways and makes them go silent when you enter their area. The doctors told Big Wig that if they choose not to treat, they could send Iron Man home and he might have a month.

Iron Man can't walk anymore because of the tumors, but he is the Iron Man. Apparently he doesn't feel like giving up yet, he wasn't to fight. So, I'm not really all that worried about him. He's not going yet. People seem to know when it gets close to their time (especially kids) and Iron Man really doesn't seem to have that "Its my time." thing going on. My dad says (when he's having one of those "I'm the epitome of wisdom." moments) that you never die until you lose the will to live, and Iron Man seems to be far from losing that.

Anyway, so I was thinking about Iron Man and about that girl. If the air is so polluted and Florida is such a "piece of crap", then just... Well what is her problem?!?! What is wrong with people!?!?! Why can't they see the beauty in things, or be thankful or something? Why is everything in their lives so terrible and how come everything "sucks" or is "retarded"? Its not! And it just gets me.

One of the great things about being a human is the freedom. It's a big responsibility and all that, but we can make our own decisions and have that whole "free will" deal going on. She could leave anytime she wants to, and if it is so awful here, then why does she stay? You know what I'm saying? She doesn't have to live on earth if it is so polluted and poopish. She can leave if she really wants to, she has that choice. It would hurt those who love her, but if its so awful here and she would be happier somewhere else....

Iron Man doesn't think the air is dirty or the state is crappy, and people are telling him to pack his things and get ready to go......

I know I'm really strange in this area, I look at things totally different than most people, I know, but maybe you can understand. There is no doubt that Iron Man needs prayers, but in some ways he is a lot healthier than other people. I'll pray for them both, but I'm only worried about one.

Friday, December 4, 2009

Dr. House on Call

Dear Reader,

Guess where I am? The hospital! See? That's me on the left by the little Christmas tree on 2SW waiting to go into my room. You can tell the tree is little because I'm little, only 5 feet and an inch, and that tree isn't much taller than me.

I had to come here because a couple days ago I went to clinic because my mid-line was pinkish. You should remember this, it was only one post ago. Well, because of my pinkish line, Agent 99 drew blood cultures on me, and those cultures grew.

We don't really know what it is they are growing yet, but they will keep me here in the hospital until my cultures don't grow anything anymore. What ever it is growing is in the cocci family and has a gram positive rod, so it isn't the E. Coli I had last time I was infected with something. House took out my mid-line at clinic today because he suspected it was the source of the infection. It was 3 weeks old, mid-lines usually only last about 2 weeks, so it was time for it to go anyway.

House has to have everything his way. He's such a poop stain sometimes. When he arrived to my room at clinic, my lunch had just came. I pretty much always get a cheese-burger no bun, french fries, peas, and lots of ketchup for my clinic meal. French fries taste awful cold. So I really wanted to get back to lunch ASAP and I don't really like House being my doctor because he doesn't know me and has the social graces of that one teacher you had in high school. You know the one.

Anyway, House is hurrying to get the examination done so I can go back to eating. He has gained some amount of respect for me over the years, but he's still House. I'm thinking we are just about done when he says, "Let's see that line now." House says everything in a real loud, announcement/command voice. I think he's hard of hearing, but I'm not sure. You always have to look at him when you talk though, like you would with a deaf person.

I know he's talking about my mid-line so I tell him, "You can't. We covered it up." Which is true, we did re-dress it and the site was covered. "Well that doesn't matter, we are taking it out."

"What? Now?"
"Yes"
"Why? Can't we wait for Agent 99 to come back?"
"No, because Patch and Dr. Huxtable are not here and I'm the only working and I'm already trying to be 3 places at once."

House always tries to make it sound like he's is the savior of the universe, but I know better, and I can take care of myself just fine. I don't need him for anything. So I tell him,

"Well, you can go then and when Agent 99 comes back, she and I can take it out without you."
"No, I want to see it. We are doing it now."

Fine! I think.

"Do you want adhesive remover?" House asks.
"Yes." I reply.

So we get the adhesive remover and go to work. I ask Mom to come over and help, and I lift a corner of the tape and Mom gets to rubbing the remover on. I wince as I feel my hairs being slowly ripped from their follicles that were buried in my flesh (they may have come out with the tape and not be there anymore), but I don't say anything or utter any noise. House takes care of the problem though...

"Look, honey. Watch." and he shoos Mom hands away, which makes me start to voice argument. I do not want his help I want Mom with her gentle hands. Mom who sees my wincing and feels an ounce of pity for it. House cares what I want to a point, but not that much.

He proceeds to rub the remover on top of the tape. Mom is intrigued and watches as he explains, "The remover will soak through the tape and it won't be sticky anymore." I'm still a bit annoyed and don't really believe this will work, but okay. I'm still up for giving it a try until House says, "See, honey I may not be as smart as you, but I have more experience." Ugh! That ticked me. More experience? Oh I'm about as sure House has more experience with needles taped to his skin as I am that Obama is secretly an albino conservative woman.

See, its just the way House says things, he is so clueless. Mom only seems to see the compliment in what he said though and points it out to me later, so I am able to forgive him.

Anyway, we continue with the tape removal, which is usually the worst part, but the tape comes right off. So, House was right about the tape coming off, which only makes me more upset. We almost have the tape off and House gets a big head. Agent 99 is in the room by now, so I'm a bit more calm. This is a very good thing because then House says, "Now the secret is to pull the tape straight up." and with the gentleness of a rabid Velociraptor he takes the tape and yanks it the opposite direction that the mid-line was going in, taking about an inch of the line out as he does so!

My mouth (and Mom's too) is shaped in a large O and I can hear noise coming out of it because it freaked me out so much. I think I was gasping. However, House doesn't seem to hear me or my mother and covers up his pause of shock by taking out the rest of the line.

Once it's out, he turns to look at my arm and says, "Where was it? Was it there?" There is this big hole in my arm from that line and he asks, "Where was it?" Could there be a stupider question coming from this doctor who knows everything? I think not, so I give him a look worth of his question. I spy Agent 99's eyes filled with silent laughter at my expression and I change it to a smile as Mom answers his question with a "Yes."

Turns out my insertion area wasn't all that red after all. Oh well. Now I have a new IV to take its place, courtesy of Agent 99.
The bruise isn't her doing. That is because of my ITP, which causes my anti-bodies to target my platelets, thus making me very bruise-able. Isn't it beautiful?

Thursday, December 3, 2009

I'm the top Dog!

Dear Reader,

I know its been super long since I last wrote. I'm sorry about that. I have lots to tell you.

Firstly, I didn't exactly get to have a sleepover on Friday. Judge had a fever and since Sleeping Beauty was exposed, she couldn't come either. It was okay though because my other cousins, who are also my neighbors came, and Brother shared his friends with me. So there were 5 kids, plus Brother and me and the fire/campout.

Our neighbors had to leave pretty early on because they had a big day the next day (one of them was turning 16), but we had a great time with them whi
le they were visiting.

Jupiter, Brother and Brother's friend who's a girl and I watched Taken. It was over at like 1:30 in the morning.
I didn't get to talk to the girl very much because we were both so very tired by the time we finally got to bed. So, unfortunately for her, she does not get a code-name.

The next day, Brothers friends (in the picture on the left, Brother is in the middle with friends on either side) all went home at around noonish. That is what happened Friday and Saturday. Now I'm going to fly through the week so you can get to the recent exciting events that have been happening in my life.

Yesterday I went to clinic. I had to go early because we were changing the dressing on my mid-line and we thought it looked a little red around the site. Of course, paranoid Patch had to take a look at it. So we made an appointment to go tomorrow, which turned out to be today's yesterday.
It didn't look bad enough for her to be very concerned, and I figured that she just missed me. I got IVIG and Agent 99 drew my blood. My creatinine was 2.4, so it had gone up. It still wasn't very high for me though, and I hadn't done any IV fluids the night before. So, the plan is to go today with no IV fluids, drink a lot, and get my blood work done at the local lab tomorrow. If the creatinine has gone up, resume the fluids, if it has gone down, I get to discontinue the fluids. It will be my first time since transplant that I've really been without fluids. It would be a BIG DEAL if it gets to happen.

If my creatinine is good tomorrow, Mom and I will remove my mid-line by ourselves. This line goes 20cm long in my arm, so it will take a while to pull out and should be quite a site to see. Combine that with all the bleeding I will do because of my low platelets and it will a great show!

And speaking of great shows, my dog video is done! It is awesome too! I'm the voice of Resi, the therapy dog, in the hospital's moving day video. You can watch it if you like, right HERE. Remember, CatWoman was behind the production of this video, so she snuck a couple cats in it. See if you can find them.

I hope you had a great Thanksgiving and will have a great Christmas!
Miss E.

Thursday, November 26, 2009

Happy Thanksgiving!

Dear Reader,

I just wanted to wish everyone a very happy Thanksgiving!

Mom and I are home right now. Well actually she's visiting FarmVille, but her physical being is in our house. Miracle on 34th Street is on the TV. All the girls are sleeping with tummies full of their Thanksgiving feast. It has been a good day.

Dad, Brother are at the group Thanksgiving party with Gorilla (my cousin who let me drive his brand new car my first time ever on the road) and Jupiter. Jupiter will be spending the night tonight, tomorrow night, and probably the next night too. The group party is at my cousins' house this year.

If you read my carepage, you already know a bit about my cousins Sleeping Beauty and my other cousin that I had code-named Judge. I'm thinking about changing Judge's code-name though, I don't think she liked it very much. I could name her Bossy Lady, she used to be really bossy when we were little, but I was bossy too, so that wouldn't work.... Well, we'll see. They are both coming over tomorrow to spend the night.

Jupiter is 5'11'' tall and Gorilla is 6'2'' tall, so they probably look really funny over at the party amongst our Asian group. I know all those Philippinos are loving having them there though. They both can really eat, and they all love to watch people eat. I think it is something about growing up in a country where everyone is starving, they just really enjoy feeding people.

Tomorrow is planned to be a very fun day here. Brother and I are each having two friends over and then we are having sleep-overs. Brother is going to have Jupiter and a friend who is a girl who is code-name-less at present. Hopefully she will earn one tomorrow. I'm going to have Sleeping Beauty over and her sister who used to be known as Judge, who may be receiving a different code-name. I'm going to talk to her about it tomorrow. I just have a super hard time picking one for her because I've known her for so long, and she's family. Picking code-names is hard, but it always seems a bit harder for family. I think it is because you know the pretty and the ugly sides of your family and you want to pick a code-name that they deserve.

The plan is to have a cookout for dinner. Mom bought some brut-worst and other cook-out items. It's been pretty rainy though, so it might not go exactly as planned. After that we are having a sleep-over. Brother's girl friend is going to come to my sleep-over, not his. Brother and Jupiter are going to be having their campout outside, and the girls are having a camp-in. Brothers friend that is a girl doesn't seem to like me all that much, but I think she's just a bit more socially caterpillarish than I am. Well probably be friends by morning, but even if we aren't it will be okay because she and Sleeping Beauty are okay friends.

So I'm all excited about tomorrow! I hope you had a great Thanksgiving today!
Love, Miss E.

Sunday, November 22, 2009

The Paper, the Dog, the Freedom

Dear Reader,

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.

Thursday, November 19, 2009

Tomorrow! Tomorrow!

Dear Reader,

I just wanted to let you know really quick that I have a very busy day planned for tomorrow. I have a clinic appointment, a photographer is going to shoot me for the St. Petersburg Times, and CatWoman and Marshmallow are going to turn me into a dog. I'm so very excited about all of this!

Also, the next day, the day after tomorrow, Brother has a soccer game at his home field.
Well, I just wanted to tell you that!
Love, Miss E.

PS Check out this note that came with my cheesecake!
It said,
"HAPPY BIRTHDAY!"
"My dearest daughter, I hope you have a wonderful birthday. Please enjoy this lovely cheesecake, it is all yours. You do not have to share it with anyone if you do not want to. I love you!"
"From: Mommy"

Tuesday, November 17, 2009

Meat Brother

Dear Reader,

I wanted to do a post today because something major happened yesterday and I had to tell you about it. Brother gave up vegetarianess. Yes, I know it is quite unbelievable but yesterday night Brother consumed meatloaf and spaghetti and meatballs. He had a tennis game, and then went to the high school to watch soccer games, and when he finally came home he was famished and I guess it was too much for him to bear.

So now we are one step closer to normalcy. Finally. I had been making tasty foods with real meat in the trying to tempt Brother since he started this "I'm a vegetarian but I eat birds." thing. I knew he wouldn't be able to resist my meatloaf for very long, bwaahahaha!

Well that is all for now, I have to leave to go to the family advisory counsel meeting at the hospital. It is so fun to go to those things. Mom is going to let me drive for part of the way. I'll be on the toll road. I've been driving everyday since I got my permit, so that would be 7 days now. A cop hasn't pulled me over yet to tell me what a great driver I am but it is coming, I can feel it.

Until next time!
Miss E.

Thursday, November 12, 2009

My 15th Birthday!


Dear Reader,

It looks like my #1 Fan hacked onto my page. I've been wondering why she's been acting so suspicious lately. I guess I'll have to change my password, though I'm glad she was able to tell you about the song that Dr. Gallant wrote, what a nice thing that was!

Anyway, things have been AWESOME here! I got home on the 9th, one day before my birthday, with Aunt Snap and Uncle BM. We didn't do too much that day except get ready for the next day, my birthday.

I woke up on November 10th, 2009 at around 9:30am. Uncle BM and Aunt Snap were already awake and getting ready to go with Mom and me to the Department of Motor Vehicles to get my learner's permit. We arrived there at about 11.

We were the only people there at first. I got to see one of the ladies (if you want to call them that) behind the counter right away. She had me take an eye exam and I could barely see the letters that I needed to see. I had my glasses on and everything, but I guess my prescription needs to be updated. I nearly failed it, I think I would have if the lady didn't want me not to so bad. She may not have been the most polite of people, but she did want me to get my permit.

After the eye exam she had me stand in front of a blue backdrop and the second I got there she snapped my picture, I asked if I could please smile, and luckily she let me take it again with a smile on my face. Then, I went to take the "written" test which was actually on a touch-screen computer. I didn't do so hot on the first part, I didn't even know what a tow-bar was let alone how long it is allowed to be, I choose 5 feet and apparently I was wrong.

I passed anyway though! Yeah! How fabulous I am! A 15 year old with a permit to drive!
I was very excited, and I think that everyone with me was too. Aunt Snap was doing her thing and snapping lots of pictures to remember the day. When I got home I snapped a picture too with my cell phone and sent it to a few friends. I made sure to send it to my cousin in Indiana, who is 20 days my senior, who can't get their permit until they are 15 and 6 months by Indiana law. I thought he might appreciate how beautiful it was:-)

Mom did not let me drive out of the DMV parking lot, it was busy because it was lunch time. Oh well. She dropped Aunt Snap and I off at home and left to get Brother from school. Uncle BM was sent to Publix to get "the guy cake" and some garlic bread.

Pretty much everyone came back at the same time, being Mom, Brother, Uncle BM, and my party guests - Polly, Celine Dion, and Gorilla. Everyone admired my permit (except 2 year old Celine Dion who wasn't interested) and got settled in. Then somebody suggested that someone take me driving and Gorilla jumped up and said "Let's go."

WOW! What a cousin Gorilla is! He had just bought a brand new Chevrolet Malibu and it wasn't even a week old yet and he's taking me driving my very first time ever! WOW! That was just too cool!

It was strange driving a car, but very nice. I had to adjust everything because Gorilla is 13 or 14 inches taller than me. We didn't go out on a main road just out and around a loop, but it was my first time ever so it was still a big deal.

We partied until 4:30; it was so nice and fun to have people over. Aunt Snap snapped plenty of pictures to remember it all. It was just an awesome day.

After everyone left, my aunt Fanny came, she had got me a charm for my charm bracelet for my birthday. We couldn't find my charm bracelet, but we think it is at the jewelers. I sure hope it is there, we've had a lot of jewelry go missing in the past couple years. She took me driving too! Brother, Mom and Baby were in the backseat. We went out on HWY 44 and it was raining! What fun that was!

As soon as we got back inside the door bell rang and Rosetta Stone was there. She dropped off her gift and left, she would not take me driving. In fact she laughed when I suggested it. Oh well. She got me a book that I had been wanting that I'm not going to let myself read until I get more homework done.

I still had one gift that I hadn't opened yet, a FedEx box from St. Nicolette. It was pretty big and I had a feeling it was special, when I opened it up I was all too right. It was super special. Inside the FedEx box, there was another box, and it was wrapped. There was a card too that said that the gift was from St. Nicolette and Father Mac. When we unwrapped the gift we came across a box which read 13" MacBook Pro. Of course I had to open this box to see what was really inside it, and it hadn't been lying to me, there really was a 13" MacBook Pro in that box!!! WOW! This was just too much awesome!

I just couldn't believe it! I was just so excited. What an awesome birthday. I told my mom later, "I had a great birthday." She said, "Did you get everything you wanted?" and I told her, "I got everything I wanted and even the things I didn't let myself think about wanting because I knew I'd never get them."

It was an totally fabulous extremely awesome extra spectacular day!
The 15 Year Old Miss E.

Sunday, November 8, 2009

#1 Fan Hacks in....

Hello Readers,

This is Miss E's #1 Fan writing on her blog. Yes, I was able to hack into Miss E.'s blog. As you know by now I watch her very closely and I witnessed the kind and generous act of the number two Fans. I thought I might have competition at first glance but they are just so loving to Miss E. that I don't feel threatened in my #1 spot.

But today was a whole new story...

As I was keeping my ever vigilant eyes on Miss E. I met an older gentleman in the corridor out side her room. He was just like a "peeking Tom". I saw him attempting to gaze through her hospital room windows. I just had to intercede on her behalf. He told me he was looking for Miss E's mother. He claimed to be Dr. Gallant, a plastic surgeon. What was he doing outside her window? I know everything about Miss E, I am her #1 Fan and she does not need plastic surgery. She is nearly perfect in every way, how could this man think his services would be needed by Miss E.? He had a different story, but first you need to know a little about me.

I have been Miss E's #1 Fan all her life. I know about as much as God does about that child, well maybe not quite that much but as much as one human can know about another. I remember her day of birth; she can out screaming at the world even though she was a C-section. I remember her crying for hours every night of her young infancy; she was allergic to milk and the doctor did not diagnose it until she was over four months old. I remember she had a blocked tear duct and woke up every day until she was one year old with one eye practically glued shut. I remember her growing and at two and three she was not able to sleep at night if she thought she had hurt some one's feelings during the day. I remember her helping her brother and playing with him and they being great friends that has lasted even to this day. I remember her having moments of terrible pain and still being able to thank those who treated her gently. She thanks all those who care for her kindly, even if they need to do a painful procedure. I also remember her battles when life passed her difficult situations, another cancer, another virus, another infection, another problem, year after year and how she has always let experiences build her character and make her a better person. I remember her saying her biggest goal in life would be to save a human life. I see her on a day to day basis giving what she can to others, sharing her joys and personal sorrows. She is a very funny person who can make nearly anyone laugh. Even as her #1 Fan, we are best friends, we respect and admire each other and we challenge each other to become better people. I would do any thing for Miss E. But there is some thing I cannot do for her or anyone else and that is what Dr. Gallant did for Miss E. and for Miss E's precious mother.

Dr. Gallant saw Miss E. and her beautiful family at the All Children's Hospital telethon this year and was deeply touched by their story. He told Miss E. that she was his hero. She confronts all that life gives and handles it with beauty and grace, she becomes better through what looks like trauma. What Dr. Gallant does for people physically with plastic surgery, Miss E. did with difficult life situations. She is a hero! He wrote her and her mom a song, a truly beautiful song that made all three of them cry. I was personally touched when I saw the older Dr. Gallant put his worn and wrinkled hand over Miss E's soft and silky hand as she lay in her hospital bed, lean over to be closer to her face, his grey hair glistening in the light and contrasting to the young and beautiful Miss E's brown and shiny hair. Then gently whispering, "You are my hero." As he explained why the sincerity touched every heart in the room. As he hugged them good bye and walked out the door, it was obvious he had become their hero and touched their hearts forever.

I am so sorry to you, Miss E. fellow fans, that I do not know how to make that song play on this blog, but I will try to find out so that some time in the future you can hear it personally. I will tell you that I have heard it as Miss E. and her mother have played it many times this very day. It is about how mothers, nurses, doctors, families and others all work together day and night on constant vigil to keep their children and patients alive. This is compared to fighting a war, as it is a type of war. And the battle ground is All Children's Hospital, the "Home of the Brave." Yes, the "Home of the Brave" is the name of the song for heroes like Miss E. and her mom and the many families and individuals that fight daily, hourly and every moment to save the lives of others.

May God bless Miss E. and Dr. Gallant and us all.

Thanks you for reading my post.

Sincerely, Miss E's #1 Fan

P. S. I would love to read your comments.

Saturday, November 7, 2009

My #2 Fans Big Birthday Gift and Mom's Special Buddy

Dear Reader,

I'm still in the hospital, but I really want to tell you about this really cool thing that happened to me.

I got a super special visit from a couple of my #2 fans! It was AWESOME! See, our original plan for Friday was for me to go to clinic and then go to the family centered care meeting over at the hospital, but since I was in the hospital and not really feeling extremely Missy-ish I didn't go.

Well my friend, Mother Goose, was planning on going to the family centered care meeting too, but before Mother Goose went to the meeting, she came to visit me and brought a super duper extra special something with her too! It was the Swain Princess!!!

How exciting to see them both! When the Swain Princess came in I was so surprised because I hadn't seen her in the window (she's not a very tall person yet), they just opened the door and there she was! She had a mask on, but I could tell she had this HUGE smile on her face. Dressed as a princess in a pretty dress, and shiny sandals, and a sparkly bracelet, she had a gift too, which she quickly pointed out to me saying, "Hi Miss E! We got you a birthday gift!"

"You did?!"

"Yeah! Here it is! It's a great gift! You're gonna love it!"

The Princess really excited about this gift and gifts it to me with both hands and then stands there and watches me. Mom was getting out her camera to take a picture of something. The Swain Princess remained looking right at me and my gift (which I been placed in front of me on my bed) with these giant blue eyes.

Oh No. I'm going to have to open this gift right now in front of the Swain Princess and Mother Goose and pretend to like what ever it is it while Mom takes a picture of me so she can laugh at me later. Great! I mean I know I'm supposed to be so thankful when people get me gifts but some "gifts" lives would just be better without. And what a 6 year old first grader thinks I'm "gonna love" isn't usually something I'm gonna love, but I must remember this is the Swain Princess we are talking about. Princesses always think about their people first.

"Should I open it now or should I wait for my birthday?" I asked smiling, not particularly to anyone though it was hard to look away from the oogling Princess.

"You should open it now! It's a great gift!"

"It is?"

"Yeah! You're gonna love it, my mom has one."

This is more reassuring, though there was still about 20% of me fighting really hard telling me to be ready for the worst and to just smile no matter what. The other 80% was totally trusting of the Swain Princess and her mother, and why wouldn't that 80% be? My #2 fans have never let me down before...

"Okay"

I started with the cards, there were two cards. The first was from the Swain Princess herself. It said, "To" Miss "you are a star and you are sooo brave"then is had this really big "LLLLLLLLLOOOOOOOOOOOOVVVVVVVVEEE" and then a royal signature. Awesome! My other card had "Forever your friends!" written in it and then the names of all my #2 fans. I pointed out to Mother Goose that the Swain Princess had written a lot more than her in her card and I moved on to my gift.

The Princess was bouncing up and down by now. So I open the gift and there is a box addressed to Mother Goose, and in that box there is another box, and on the side of that box there is a silvery apple with a bite missing, and next to that apple there are the words "iPod touch."

"WOW! You were right! This is a great gift!" I say as I open this gift with a genuine smile and a flash of the camera. "It's inscribed," says Mother Goose.

I can't really remember what else I said because I was really excited too. The Princess and I were both really excited. I knew I said some stuff about Brother and, "good he can't have it then" and "broke his wrestling". I was having a difficult time getting it out of the case thingy.

Then CatWoman came in! She had a card too, it was a get well card from her and my god-felines. She quickly made it clear that she didn't expect me to get very hyped up over her card after my #2 fans gifts, but I really liked her card anyway. I had to laugh at the input from my god-kitty's, and the Princess had to know why I laughed, so I told her that my god-cats "are concerned for me and want me to get plenty of rest and get better". I don't think the Princess thought it was funny enough to laugh about but did the politically correct thing and said, "Oh, okay."

CatWoman left pretty quick. She is always so busy.. Anyway, I got the iPod out and my inscription was on the back. It said, "Happy 15th Birthday! From Your #2 Fans!"

By then it was time for Mother Goose and Mom to leave for the meeting. They left the Swain Princess with me to babysit me. They didn't tell me I was going to be babysat, but that is what happened. It was fine by me though because the Princess was a great babysitter!

She talked the whole time. She was just so cute! She showed me all the games that she had for her Nintendo DS and gave me the low-down on them, "These are mine, these ones I stole from my brother." When my nurse came in to fix a beep she seemed interested in who she was, so I said, "This is my nurse ...." and then to my nurse I said, "and this is my friend ...." and then the Princess said, "Yeah were great friends! We know each other real well!" And I just thought that was so sweet and adorable!!!

When Mom came back with Mother Goose we all visited for a while longer. The Princess really didn't want to leave, but they still had to visit Hawkman and get the Silly Goose from school, so they had to go. When the Princess was leaving she said, "Bye! I'm really going to miss you." Now, I don't usually say, "I'm going to miss you." when saying good bye to people because honestly I don't really miss people enough to justify that, it is really something special to be genuinely missed.

I mean people say, "I missed you!" a lot but they are lying. I mean people haven't seen me in 2 or 3 years or talked to me since 1st grade and they re-meet me and say "I missed you so much!" And I think, "You are such a liar! How can you say "I missed you so much" when you don't even attempt to contact me for 2 years! In fact the only reason you are talking to me now is because of some friend suggestion ad that came up on the side of your Facebook page right? I don't even want to talk to you anymore because you are such a liar! You disgust me with your dishonesty! Why don't you just slap me? You *$@#&+!!!"

But looking at the Princess and hearing her, "really going to miss you" and her sweet face and the way she said it, I knew she was being genuine, and I knew I was going to miss her too and so I did say, "Bye. I'm going to miss you too." And you know what? I do miss her.

So that was Friday! By the end of that day, I was back to feeling awful! Then today I woke up at noon and I still wasn't feeling so great, but then I started feeling better, and now I feel pretty good.

Mom spent almost a lot of today today in Hawkman's room. She and him are special "buddies" now. Mom is sure of this because she got the special "buddy sign" from him. She is using Bop-Its and promises of Star Wars Legos to help boost their relationship, in my eyes Hawkman is defenseless against buddy-ism. The poor dear.

Its all good though because the more Hawkman likes Mom the more he seems to like me, which is fine because I already liked him and HawkMom a lot so we might be leveling out now. He drew a picture for me and my mom today. It is really pretty. There is a big rainbow in a blue sky, a big green hill with flowers growing out of it, and me and my mom running down the hill. He drew Mom tall and thin with long blonde hair, so Mom is pretty pleased about that.

So as you can see, it has been improving here. We are hoping to go home on Monday and we should be bringing my aunt and uncle home with us for my birthday on Tuesday. So next time I write it should be really long and full of the exciting tales of the life of Miss Ellaneous.

Until next time,
Miss E.

Thursday, November 5, 2009

I'm so Hot!

Dear Reader,

Yesterday I woke up in the morning and I didn't feel good. I felt sick. I went to Mom and Dad's room and took a nap in their bed with Baby. When I woke up again, I still didn't feel good. When I took my temperature it was 38.7 degrees Celsius, a fever. So Mom went into busy mode and we were on the road to the hospital in an hour.

We went to clinic first to check in and all, my temperature was still 38.7. You can type that into the conversions thing here at Wold Wide Metric if you want to know what that is in Fahrenheit. We had my blood cultures and labs taken there. I got tested for everything. They had to take my snot to test me for the Swine Flu, so Mom was trying to make me cry. She told me that she ran over the neighbors dog (whom I like), and that our ancient neighbor who was going to baby sit my cheesecake for me was going to eat it, and any other stuff she could think of. I told her that I could do it myself and eventually was able to conjure up some snot without her help.

I went to the hospital and was feeling pretty good for a while, but when night time came I started to feel real awful. I was really cold and really tired. I had a whole bunch of blankets on me to warm me up, I was shaking, and I was out of breath and exhausted. I just felt terrible.

Mom took my temperature again and it had gone up to 40.5, which if you type into the conversion thing you will see that is 104.9. Which is really very extremely high especially for a bone marrow transplant patient. My nurse and my mom made me take Tylenol even though I didn't want to take it. I was a bit sassy and told them, "That Tylenol won't do me any good if I puke it up, now will it?" So Mom told me, "Miss E. that temperature is high enough to give you brain damage, if you don't take anything to help it go down you'll never get to be a doctor. Even if you puke some of it up you might have gotten enough in you to help with the fever." So of course then I had to take it, I couldn't risk loosing my career or my supreme genius.

My fever broke sometime early this morning. I think it broke in pieces, not all at once. Either way I feel a lot better now, I still don't feel good, but I don't feel horribly terribly awful.

My cultures came back this morning saying that I had E. Coli in my medi-port line. This was the suspected thing that happened last time I was in. Apparently if the line is infected it will keep coming back unless the line is taken out and replaced a few weeks later after the virus dies. So today I'm going to get surgery to get my port taken out. I'm going to get another line somewhere in my arm for my fluids every night. I'm really not looking forward to my arm line, I really don't like those at all. They hurt, ports and broviacs don't hurt once their accessed, but these "temporary lines" do. Not looking forward to it at all.

In other news, my cheesecake is supposed to be delivered today. Dad put a sign for the FedEx man to bring it across the street to our ancient neighbor's house, it needs to be refrigerated. My birthday is in only 5 days. I'm very excited, but I don't know if I'm still going to get to have my party, but we are still hoping to be home.

Also, Hawkman got sent home, but he's back now in the ER downstairs. So please pray for him too.

Love, Miss E.

Monday, November 2, 2009

Just an Update and Prayer Request

Dear Reader,

It has been a long time since I last wrote. Sorry to disappoint you but I probably will be keeping the long gaps in my writing until after the holidays. Things are much more exciting this time of year, meaning I have stuff to do and people to watch. So, hopefully, if all goes well, I will be so busy doing things and having fun that I won't have time to blog!

Last time I wrote it was to remind you to listen to me on the radio. It was really fun doing the radiothon this year. I always have fun doing things like that. I decided to go green for Halloween and I went to the radiothon in my costume. I think probably 38% of the people didn't know who I was and didn't realize that I was in costume, they just looked at me really strange and then looked away super fast. The other 62% of the people that saw me in passing at the hospital seemed to know who I was and said things like, "Great costume, Mary!" and "Love the hair!"

There is a video that you can find me in HERE. Remember I went green!

On Halloween, Brother went trick-or-treating with Angler and a few other friends. Brother and Angler were soccer players. Brother spent the night at Angler's house because they had a soccer game early the next morning in Tampa.

While Brother was out being a soccer player, I baked cookies. I make chocolate chip cookies from scratch and after that Mom and I had a little party with Norman Bates. Psycho was a really cute movie. My favorite parts were when the private investigator fell down the stairs and at the end when the fly was there and Norman's mother was saying how she would never even hurt a fly.

Brother actually won his soccer game on Sunday 2 - 0. He scored both of the goals too because apparently "He's a beast." Mom and Dad didn't get to go watch him because it was too early and too far away and Dad wanted to get his car blessed and go to church and they didn't have time to do both. Brother's next game is at home though, and we are all planning to go and watch him at that one.

My birthday is getting very close! In only 7 days and 2 hours I will be 15 years old! Mom and I are getting super excited because we are actually planning a party. If everyone who is invited comes then it will be my biggest get-together in over 2 years! My aunt and uncle are flying in, Gorilla (my cousin) is supposed to come, Polly (my umm, my Polly) is coming with her family, and we are inviting the group. Mom also invited Brother's Foxes while she was at church and we are also hoping to invite the super ancient people that live across the street so that they won't have to cook! I'm getting very excited!

So that is about all that has happened lately! I ordered myself a Dulce de Leche cheesecake birthday cake from The Cheesecake Factory on-line with Mom's credit card and it is supposed to come this Thursday. I also included a note but I forgot exactly what it says, I'll post what it says later when it comes. Friday I have a family centered care meeting at the hospital and I also have a clinic appointment the same day. I'm really excited about that. I'll probably be the youngest person at the meeting and this is a great networking opportunity for me. I really enjoy networking!

So, I'll let you know if anything very exciting happens. If I don't write in a long time, it is probably because I am busy being busy and having fun!

Thanks for reading!
Miss E.

P.P. Please pray for my friend, Hawkman. He is sick in the hospital right now and his uncle's wedding is this weekend. I don't want him to be too sick to go. Thank you.