Wednesday, September 30, 2009

Clinic Update: 1 Year, 9 Months, 10 Days Post Transplant

Dear Reader,

I went to clinic today! I have come to rather enjoy going, it is my social outing of the week. Now I have 3 days of social outing and it is so wonderful!

One day is clinic day. Every week I must go to clinic to get my needle in my port changed. I almost always get to see Agent 99 (my regular clinic nurse) and Patch (my doctor). Sometimes, other visitors also stop by. This time, our extra visitor was The Bag Lady, our bone marrow transplant coordinator. She just stopped by to show off her bag to us. One of her patients and her crazy mother made it for her and it says "Got Cells?" on it and has a bunch of buttons that are supposed to be cells, and the "cells" have the names of what they are next to them. There is also a bone patch on it with the word "Marrow" written on it. It is made very nice, Mom and I did a great job!

The other two days are the days my brother has soccer practice. I go with to pick him up. I just started to do this. I bring Piggy with me to work on her training as a therapy dog. She has to know how to sit, lay down, stay, and come and be able to do them with distractions. She also has to know to walk on a leash and not to greet anyone who doesn't want her to greet them. I'm also trying to teach her to keep her tongue to herself, but she is very friendly and affectionate. So, me and Piggy go and practice being a therapy "team" at soccer practice, and I really like it! Piggy and I are both very social.

Another day of the week, my home-bound teacher, Rosetta Stone, comes. I don't call this a social outing though because I don't go anywhere.

Anyway, today was clinic. Here is the low-down.....

I'm seem to be doing much better! I have more energy, and I got to lower my steroids by 0.5mg a day. My creatinine (kidney function number/level) went down a whole bunch too! That was so good. It is 2.08 now. It is still quite high, but a lot lower than it was, it doesn't only go this low unless I'm at the hospital. A good, normal creatinine number would be between 0.5 and 1. So, I'm getting closer.

Also, I lost that bit of weight I gained while at the hospital. Three people have told me that I am skinny today. I attribute a lot of it to the new clothes that my mom got me. My clothes actually fit me today. Last year at around this time of year, I was very swollen from the steroids and my kidney function not being good. I was a size 15 pants, I think. Now I'm a size 9 (I doubt I will ever be this size again) which is the same size as Brother. Brother shops in the girls department sometimes..... He likes the tighter fitting clothes and they don't have those for boys where I live. Some may call him strange, others may call him secure, I just call him Brother.

I seem to be bruising a bit more. I found quite a few new bruises on me during this past week and I don't really know what caused them. Still, I always have bruises all over me, because of my ITP, so it didn't really worry anyone. My platelets are around 110, so we aren't going to worry yet.

I'm feeling a lot better though, and I seriously hope it keeps up.
~Miss E.

Tuesday, September 29, 2009

The Massage

Dear Reader,

I want to tell you about something that happened last night.

Last night, after I had taken my nightly meds, hooked up my nightly IV fluids, brushed my teeth, and got already for bed, I went to my parent's room to watch "CSI: Miami" with them.

Watching CSI has kind of been a family tradition for us for a while now. It is on Monday night at 10. Mom and Dad used to watch it together, it was kind of their thing. So, when I was at the hospital on Monday nights, Mom used to watch it. I think it was her way of kind of remembering Dad, plus it was the only show she really watched. So, after a bit I started watching it too. Then when we would be home and Mom, Dad, and I would stay up and watch TV 'til 11 and Brother would watch too. Why should he have to go to sleep when everyone else is up? Eventually, it kind of became our weekly family thing.

So last night was "CSI: Miami" night. Brother couldn't watch it with us because he had saved his homework until the last minute and was up late building a teepee for his project on the Sioux Indians. So, Mom, Dad, Baby, Piggy, my pole, and I watched the show without him.

Dad had been complaining about his lower back area during every commercial break. I tried to look up the name of the muscle, and it seems that it was the lower part of his Latissimus Dorsi (Lats) muscle on his left side that was bothering him, the very top of his left buttock. So he was telling Mom that it was sore. Mom is a licenced Occupational Therapist and Dad is a licenced Physical Therapist. Dad was debating whether or not he wanted it massaged, and I didn't really listen too much to the rest. I was too busy watching the handsome new CSI agent.

After the show, the news came on. I was in no hurry to leave as I was attached to my pole and kind of like to procrastinate travel when I have to carry the pole with me. It doesn't have wheels, it only has this little stick legs to prop it up, and it is a pull out pole. So sometimes it gets too loose and shortens itself about a foot all of a sudden and crushes my fingers. Other times it's feet catch on things and make me rebound on myself. And then there is the IV line problem. Sometimes it is fine, other times I step on it, it catches on things, twists it self around the pole or me (I have woken up with my arms tied to my sides before). Travel with IVs is not the most pleasant thing to do.

I turn to look at Mom and Dad, and Dad is on his belly. He has the bottom corner of his shirt up so the lower left part of his back is showing. I'm so glad my dad doesn't have a hairy back. I'm thinking Mom is going to massage Dad's back. That's fine by me, I know about that from my massage therapist! So, I say to Mom, "Oooo! You are going to give Dad a massage! I'll teach you how Rubber does it." (Rubber is my massage therapist when I'm at the hospital)

So, then Mom says, "Are you sure you want to stay? It's his butt."

"Oh! Ewww! I don't wanna see his butt!"

"Okay then. You better leave."

I'm already out the door, "Good night! I love you!" I have my hand on the handle now, "Piggy come 'ere, 's time for bed." That's it. Me and Piggy were off to bed, when I spy with my little eye, Brother! He was in the exercise/computer room printing a sign for his Sioux project. Little sparks go off in my brain at the sight of him.

"Brother! Mom is massaging Dad's butt!"

"What?! Ugh! No way!"

"Yeah way!"

"No way! I don't believe you, you are lying!"

I'm having fits of laughter and giggles now. "No! I. she is!"

"Nuh Uh. You. Your sick!"

I was still walking to my room this whole time, and still laughing but manage to say between my laughter, " Yeah! Good night, I love you!"

So, I get to my room and open the door when I hear Brother yell, "Oh! Ewww! You guys! Ugh! That's Gross! Uggghhhh!!! Lock the door next time!"

After that I hear a door shut I look towards the noise and there is Brother right in front of me shoving his cell phone in my face (I wonder how he travels so fast, it must be because he has no pole). Then Brother says, "Missy!! You have to see this video!"

Oh, the joys of having a little brother.
~Miss E.

Sunday, September 27, 2009

I am Miss E.

Dear Reader,

I believe I'm experiencing "writer's blog", meaning I'm not quite sure what to write but feel that I should write something. I thought I might write something that would inspire deep thinking, something that would dig deep into your soul, perhaps something about love, about God, or about some kind of beautiful suffering that brings tears to your eyes. If I did this though, where would I begin? And for that matter, where would I end?

It's subjects like these that have kept the mortal mind occupied for eternities! Since the beginning of time man kind has been on the search. We have been explorers, hunters, and investigators, searching for love, searching for a "higher power", searching for beautiful touching things, searching for a meaning or a purpose. Where to find it? Where to look? What to look for?

Life can be quite a pickle.

What do I, Miss Ellaneous, a 14 year old girl in her first year of high school, know about life?

I've learned that there is always more to learn :)

Take age for example, I have learned that there are a few different kinds of aging.... For instance, my body may be 14 but I feel that I am much older. I don't really fit, I am Miss Ellaneous after all. Lots of times words come out of me and thoughts are born inside me that most people think belong in a "senior citizen". Then there is that thought. Are not all man created equal? Why should I be treated so differently because I am young? What I have done to be worthy of any kind of special treatment? I am a human, am I not?

Which brings me to this thought, many people have told me things like (or even exactly), "Someone Up Stairs owes you." or, "If anyone should get what they want, you should. You deserve it." They say these because I've experienced physical pain and sickness. They say these things because when kids tell me that they go to school I congratulate them on "living the dream".

That's all school has been to me for years, a dream. Other kids whine and throw their "School is a poopy place!" fits while I can only dream of getting to do what they do, of seeing friends everyday, of having someone repeat things over to me to "teach" them to me, of crushing on that cute guy with the gorgeous eyes and of letting my inner social butterfly out of the closet. Many people think I deserve these things, or at least deserve to be healthy, but really if you think about it, do I?

What have I done do deserve these wonderful things? Nothing out of my ordinary. What have I done to deserve any of these "terrible things"? Nothing out of my ordinary. Truth be told, I have just been myself my whole life. (Imagine that!) Some people may think, "This kid is amazing! This kid is inspirational! If only I had her strength!" Those people are very flattering, and to be honest I do enjoy hearing these things very much. However, please know that I've only been myself all these times. I haven't done anything to deserve anything and haven't done anything not to deserve anything. I've just tried to be the best me I could be, which really isn't all that special... Is it?

Simply, Miss Ellaneous

Friday, September 25, 2009

Polly and Clinic

Dear Reader,

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.

Tuesday, September 22, 2009

Code-Name Respect

Dear Reader,

I just have a quick note for you. Well, I hope it is quick anyway. Anyways, Mom found the cord for the camera. So, I should be posting some photos for you soon, you should see how cute I look with my new hair cut. We have all the books for it so we just have to get it done.

Today I had more energy than usual, so I was teaching Pig. I'm training her to be a therapy dog. She has "STAY" and "COME" down and mastered. I can look her in the eyes across the room and talk to her while she is staying and she will not move. She will only move when I say "COME" and give the hand command. Every command has a hand signal to go with it. I must be a pretty decent dog trainer, though Pig is a genius when food is involved. Without food, it is harder for her to keep her concentration. I'm working on "SIT", "LAY", and "GO TO BED". She seems to know what I want her to do, but she doesn't seem to really know what the words and signals mean yet. She is closest to getting the "GO TO BED" command.

The real reason I wrote was to remind people to respect the code-names and answer a few questions. Comments go to me before they are posted and if they contain information that exposes someones true identity I am forced to remove them. I really don't like removing comments, but I must, to protect the innocent. So please, do respect the code-names. You don't have to comment as "anonymous" if you don't want to, but please don't put anybody else's personal information in your comment.

Some questions that some of you have asked are, "Can I get notified by email when you post?" and "How do I leave a comment?" Believe it or not, even though I am totally new to the "blogosphere" I can answer these questions!

To the first question, YES! You can! I worked on it all morning, I nearly tore out my beautiful luscious curls over it, but I finally googled the right words and I found out how to make it so you can get an email notice when I post. Over to the right of the page there is a section titled "Subscribe to my Memoirs via Email" and there is a little rectangle underneath. To subscribe to my memoirs via email, type your email address in the rectangle and then click the "subscribe" button underneath it and follow the directions on the new window. You might have to disable a pop-up blocker, but I'm not sure.

To the second question, there is a little link at the end of each post that says (#) comments. Click on that and it takes you to a page where you can leave your comment. There is also a little place where you can check what you want to show as your name. The name thing works a little differently for different people. Some people if they want to type their name will have click "name/URL" before they can. Those people do not have to put anything in the URL rectangle. Other people will just have a place for you to type your name. If there is no place that says (#) comments then there should be a comment box right under my post. The name thing should work the same way.

I hope this answers your questions, if you have anymore or any suggestions please send them in a comment or an email. My email address is located on the right. Thank you! Your, Miss

Monday, September 21, 2009

My First Haircut and Piggy's Progress

Dear Reader,

I really wanted to do a post today. It is really late, 9:57pm this moment, but I think I have enough time.

I got home from the hospital yesterday. As you can see in my previous post I was in for a fever. The doctors never did find out why I was having my scheduled fevers, but they are guessing that I am allergic to an antibiotic. I get this antibiotic every 12 hours, so it makes sense. Mom was actually the first one to think of it. She is so smart sometimes, or maybe her moments are just so much more glorified because of how she is all the rest of the time. Either way, I think she is right about her antibiotic hypothesis.

Today I got my first real haircut in 5 years! I haven't needed one because I had been on chemotherapy for so long. You can't cut a bald person's hair, not their head hair anyway. Violet, our friend and my new hair lady who has purple in her hair, actually wet my hair and everything. She used a comb, scissors, and a water from a spray bottle. It was a real hair cut! I got it done right in my own house. I can't go to public places because of evil germ-mans. Those germ-mans will kill me, so I only really go to the clinic, the hospital, my own house, and the van. Anyway, I look so cute now! I have bangs, and my curls are just adorable. They only got a little trim, I didn't want to loose any. I will post a picture as soon as my mom finds the cable for the camera. She is still on the hunt.

Speaking of my mom, she is addicted to FarmVille on FaceBook. She is on level 21. She also keeps talking about this halo that she has on her head. It is her collection of hair fuzzes. Her hair is really growing in now that she is done with her chemo. She's had ovarian cancer twice. Its a stage 3. She seems to be doing very well right now even though not many people with her diagnosis (4%) live beyond 5 years after their first diagnosis. I think she is already at 4 years. I just checked on her and she's doing tatting, so she isn't dead yet. She is a mold breaker.

I usually go to clinic today, but my appointment was rescheduled for Thursday. So, I'm looking forward to my social outing of the week. I'm already missing people. The hospital was so full of them. I'm so glad that Violet came over to do my hair, it is one more different person that I get to see. In the mean time I will be working on my virtual school work. I got some Geometry and Biology turned in today. My home bound teacher might get to come before then. That would be great because then I could start home bound school. I haven't been able to start yet this year because I've been in the hospital too much. I've only been able to do virtual school so far, and I only take Honors Biology, Honors Geometry, and Driver's Ed in virtual school.

I think that is about all that has been happening around here. I don't think anything new is happening with Brother or Dad. However before I sign off I want to tell you some very good news about Pig. My dog, Piggy, is a chocolate lab. She is two and a half years old and has been struggling with her weight for about 20 months. She was severely obese, not being very tall and weighing over 100lbs. She was like a mighty furry barrel with legs and a tail. She has been on a strict diet lately and I would like to share some wonderful news with you. My dog can lick her own butt! She can do this all by herself with no help! Hooray for Piggy!

I hope you all have a great day!
Please leave me a message. Maybe you know someone who is struggling with their weight? Are they doing as well as my Piggy? Can they lick their own butt? Let me know!

Friday, September 18, 2009

First Post, a Surprise, and a Gorilla

Dear Reader,

Welcome! This is my first blog post. These will be my memoirs of my life. I have quite a story. I tried to sum it up the best I could in an "About Me" section here at the bottom of the page. There is much more to the story though; I was only allowed 1,200 characters in the "About Me" part. Plus, my story is in the making. I'm only 14 years old (I'll be 15 in November) and I've got my whole life ahead of me.

I have to tell you a bit about how my blog is going to work. Firstly, I rather it thought of more as a journal, note, letter, diary, or as my memoirs. Blogs always remind me of gossip, but I'm not going to deny that this is a blog or that I am a blogger. I am. Secondly, I'm going to let you into my life and my mind through this blog, but I don't want people to be hurt in anyway because of that. So EVERYONE will have code names. You probably guessed by now that my name isn't really "Miss Ellaneous". That is my code name. My mom used to call me that when I was younger and it fit. I am Miss Ellaneous, I don't really fit in anywhere. I'm not your normal teenage girl, I don't even know what that is. If ever you figure out anyone's code name, please keep it to yourself. I don't want people to feel uncomfortable around me because I'm Miss Ellaneous and I don't think that other people (Polly, Patch, Celine Dion, CatWoman for example) would want that either.

Today I got a super special surprise from a lady. I'm in the hospital right now for a fever. My fever comes about every 12 hours and it's been coming for about 5 days now. The doctors still aren't positive what is causing it, but my mom proposed a hypothesis to them and they are looking into it. It sounds completely logical, my mom's idea. We still aren't sure though. Anyway, I got a surprise today. A lady came in my room, didn't tell me her name, didn't answer when I said, "Who are you?" and sat her baggy down on my bed. What!!! Who does this lady think she is?!?! Who is she to come in and plop her stuff on my bed and not answer my questions?!?! This lady ticked me off. After a while though, she told me who she was, and opened her bag and gave me what was inside. It was a super special item. There is this group that gives these items to kids who are sick in the hospital. Then a little bit after that she left, by then I liked her. I got the bag too. Today was a pretty cool day.

I have to be in the hospital for a fever because I don't have an immune system. A fever can be easily fatal to someone like me. If I get a fever over 38 degrees Celsius I have to be admitted so that professional specialized ologists and nurses can watch me. I don't have an immune system because I had a bone marrow transplant about a year and 9 months ago. If you know anything about bone marrow transplant you might be thinking "A year and 9 months?! That is a long time, her T-Cells should have been grown and matured by now!" However, I had some complications with transplant. I had acute Graft vs. Host, BK Virus Induced Hemorrhagic Cystitis, BK Nephritis and Idiopathic Thrombocytopenic Purpura (ITP). In between all of that, I also struggled with side effects of large doses of Prednisone (steroid) including high blood pressure, major swelling, food obsession, diabetes and (never told before now) depression.

The treatment for the ITP probably set me back the most in my progression (I would say that BK Nephritis comes in second), it kind of re-killed my immune system. It was like starting over. When your blood attaches anti-bodies to your platelets and they can't identify the anti-body, you have ITP. I always have bruises and my skin is very fragile. The ITP is stabilized right now and usually my platelets are around 100-120, 175 is normal for my age, so that isn't so bad.

Right now my cousin, Gorilla, is over visiting me. He is a nerd. He is code named Gorilla because he was one for a long time. We love him to bits though. Walski just came in too. She my friend and works as a family rep here at the hospital. So, I'm going to sign out of here and visit with them. I hope you liked my first post, and please leave a comment if you can!