Tuesday, December 29, 2009
Monday, December 28, 2009
Wednesday, December 23, 2009
Friday, December 11, 2009
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.
Tuesday, December 8, 2009
Sunday, December 6, 2009
Friday, December 4, 2009
Thursday, December 3, 2009
Thursday, November 26, 2009
Sunday, November 22, 2009
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!
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!
Thursday, November 19, 2009
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!
"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!"
Tuesday, November 17, 2009
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!
Thursday, November 12, 2009
Sunday, November 8, 2009
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
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!"
"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!"
"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...
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.
Thursday, November 5, 2009
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.
Monday, November 2, 2009
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!
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.