Super Taylie Bug: April 2010

Friday, April 23, 2010

Clinic

Tuesday April 20, 2010. Today @ 2:00 is my first clinic appointment after finishing my Cancer Treatment. My line is all gone and my little hole in my chest is all better now.

Today I have to be so brave. They are going to poke my arm to get the blood they need to see where my counts are at. My mom has been talking to me about this a whole bunch. It makes me scared, but she always tells me, "lets not think about it right now."

My mom took me to Sam's club before we go to Salt Lake. I want to bring all my friends at the hospital some treats. We are going to give a bunch more tiles too. We had to get a wagon to put everything in it. I picked out skittles and starbursts.

I was super brave. I only cried a little bit. I sat on my moms lap while another lady held Sunnie. I like to squeeze my Moms hand when I get afraid. Now it's all over for this month. We had to hurry upstairs to my clinic appointment. My Dr. came in and checked me out. I have a lot of energy and she said I looked and sounded great. They printed off my labs for my Mom. She says that I am back to normal right now. So I don't have to wear my mask anymore when I go places. Yeah!!!

I got to see some of my really special friends today. It makes me sad that they have to be in the hospital still. My Mom told me that a few of them are really sick. This made me sad. While we drove home I sang songs about my friends. Songs about how much I miss the ones that are gone from us. Songs about the ones that are so sick and fighting as hard as they can. Songs about the ones that are ready to leave the hospital soon. Me and my Mom talk about a lot of things. Today it was about my friends. I love all of them.

My mom is so crazy all the time that she forgot to remember to take the camera. So I don't have any pictures from today. But it's okay, I'm not mad.

We stopped at my Grandma Jeanne's before we came home and ate some dinner. Pretty soon I can come down again and go swimming. There just wasn't enough time today.

Today was a long day. We spent a lot of time in the truck. I'm glad that Sunnie and my Mom came with me. I'm mostly glad that I don't have to stay at the hospital anymore. My mom says she is so glad that my numbers are right where they should be. They better stay that way too!

Wednesday, April 14, 2010

Look!

Can you see it. It's growing back like a weed!

There's a few patchy spots, but I'm not a cue ball anymore!

This is what my head looked like only one month ago!

Friday, April 9, 2010

....almost done!

Friday April 2, 2010

This is the day that I get my Central Line taken out. Yep, it's time to remove it completely! This is me and my mom in the way cool hotel room we stayed in the night before. This is a picture of the last time I have to get my line flushed. We did this early in the morning, but I can't go to the hospital until 1:00 for my little surgery today. I am so excited to be line free!

My Mom and Dad both came with me. I had to not eat anything all morning long. I have a little cold right now too and I keep coughing. My throat wanted to just have one little drink of water, but my parents wouldn't let me until after my surgery! I'm going to tell the Doctor to hurry really super fast. My nurse got me a bag of pretzels and a little bottle of water waiting for me when I got all done.

I had to wait for a little while in a room before it was my turn. We played Hide and Seek a whole bunch and I watched Garfield on the TV. I was not scared at all, just really hungry and thirsty. When it was my turn to go my Mom took me back. She held me while the Dr. put the sleeping medicine into my line. I really don't remember what happened after that. My mom told me that I made a really long sigh when I fell asleep. She said I sounded really cute.

It didn't take very long at all. When I started to wake up I didn't see my mom anywhere. I got really scared. My Dad was there to hold me, but I really wanted to see my Mom. The nurse had to page her on the loud microphone because she was upstairs visiting some of her friends. When she came down to hold me I was happy. I was kinda ornery. I don't like waking up from the anesthesia they give me. All I wanted to do was to go home. And so we did. And look at me...I'm line free!!!

They put this bandage on me and I have to keep it here for two whole days. I can't get it wet either. When I take it off then I can get it wet a little. When it is all healed up I will be able to go swimming and lay down all the way in the water when I take a bath. Yeah!

I'm getting a new puppy today. He is an English Springer Spaniel Liver and White dog. I decided to name him Fezter Wezter 2. My Dad likes the name Fez so I just made it sound cooler. He made me feel so happy today.

Today is the final day of all of my Treatment! I have to go to the Clinic at the hospital every month to get looked at and get my blood drawn.
I have to get my arm poked to get my blood drawn because I don't have my line anymore. I know it will hurt really badly because I had to do it that way before they got my line put in. I think I might cry, but I'm going to try to be brave!

I love being at my home. I get to be with my whole family. My Dad still has to work all day, but I get to play with my puppy and my sisters, Mayzi and Sunnie. We like to be together. We like to play games. I like Hide and Seek and Don't you dare get off the bed! My family is the coolest ever!

I AM A SUPER BUG!!!

One-Tough-Bug!!!

At the super age of 4 I found out I was really sick. I had what is called AML Leukemia. It stands for Acute Myelogenous Leukemia. My mom told me that I have Cancer. Leukemia is a cancer of the marrow in my blood. Acute Leukemia is a rapidly progressing disease that affects mostly cells that are immature (not yet fully developed). These immature cells cannot carry out their normal functions. How does this happen? AML results from aquired changes in my DNA of a developing cell in the marrow. These cells like to multiply really fast and are called "blasts". They don't function like they are supposed to. These cells survive better than my normal cells and they crowd out the healthy ones. The dirty buggers block my production of normal cells, which makes me have low red blood cells and platelets and no white blood cells, especially nuetrophil cells in my blood.

I was really, really sick. I didn't want to eat any yummy food and I lost a lot of weight. I got bruises really easily and also nose bleeds. I Hate nose bleeds! My skin looked kinda green also. I usually like to play alot, but my body was really tired all the time.

When I was diagnosed my Dr. told my mom about my type of AML and how they were going to get me better. They said because I was so sick I had to stay there in the hopital for a lot of months. I asked my mom how many, and she said about 6-8. Wow, that's a lot! I stayed on the 4th floor of Primary Childrens Hospital in a unit called ICS. This is where all the sick kids that have cancer or another diesease that effects their immune system. I was scared, but she told me that she was going to always stay with me here in the hospital.

They told me this is what we are going to do to get me better:

First, I had to have no evidence of luekemia blasts in my blood or bone marrow.

Second, my normal blood cell production needed to come back to the normal levels all on their own.

They didn't waste any time getting started either!

I have to get a strong drug called Chemotherapy. It will kill all of my red blood cells, platelets, and white blood cells if it works in my body. I have to start with 3 rounds of Chemotherapy. Each round is a little different. I will also be getting different kinds of chemotherapy drugs. This is how it will go:

Round 1 I get chemo for 10 days straight and then have to wait for my cells to build agian. They call this my count recovery.

Round 2 chemo for 8 days then count recovery.

Round 3 chemo for 6 days then count recovery.

If the chemotherapy is doing it's job in my body then I will continue with 2 more rounds of chemo. If not then I might have to have a Bone Marrow Transplant. They tested my sisters Mayzi and Sunnie to see if thier DNA in their marrow was a match to me and neither of them were. I was doing good with my treatment so I have 2 more round of chemo to do.

Round 4 5 days of chemo then count recovery.

Round 5 2 days of chemo then 5 days off then 2 more days of chemo then count recovery.

In order to get my treatment they need to put what they call a central line in my chest that goes directly into my heart. I was pretty scared for this, but a nice man talked to me all about it and my mom said that it would be all okay! My line has two lines that come out of it. A large one that is yellow and a small one that is blue. I have to do my best to keep my line clean and safe as I can. They have to put a bandage on it called a dressing. I hate to get my dressing changed because it hurts really badly. They had to change it once every week. Yucky!

I had to be kept really safe in the hospital. Sometimes people could come and vist me, and sometimes they couldn't. Sometimes Mayzi wasn't allowed to come. This made me so sad. I really missed her a lot. My baby sister Sunnie got to stay with me all the time because she had to be with my Mom! This helped me feel happy. I got to take care of her and give her baths and hold her all the time.

The Hospital always had something fun for me to do while I lived in the hospital. My friends and even people I didn't even know gave me lots of presents that helped me out so much. I made lots of friends here too. Most of the time I couldn't leave my room but I still could peek out the door window and see what was going on. I loved all my Nurses and Doctors. My Mom really like them too. She told me they helped her out lots.

Sometimes I would get sick in the hospital with an infection from my body. I would get really high fevers. I hate having fevers! They always lasted too long. I only could have tylenol and no motrin. My Mom and the nurses always put really cold wash cloths on my head and ice packs on my body. It made me freeze, but my mom said it made my fever go down better. Then my Dr. put me on a lot of medicines called antibiotics. Sometimes I had a reaction to them. Sometimes my blood levels got really low because the chemo was working. They had to give me Blood Transfusions all the time. I got Red Blood Cells and Platelets too. I felt better when I had recieved new blood. Sometimes I had a reaction to the blood they gave me too. They always gave me Benadryl and that made me tired and go to sleep.

On the weekends and sometimes in the middle of the week my Dad would come and stay with me. I liked it when I was with my Mom, but I liked it even more with my Dad. I love them both though! Sometimes if my Mom or Dad couldn't stay with me then one of my Grandma's or Grandpa's would. This was always a fun thing too.

My chemo made me not want to eat anything. My mouth tasted funny and food tasted funny too. My Mom said I was getting really skinny. I got really tired of eating the hospital food. So My chemo made my hair fall out really fast. My dad gave me a buzz and then he buzzed his head too. We looked silly together. My Mom cut her really long hair and that made me feel happy too. My Dr. told me that when I get all done my hair will grow back, maybe even curly! It doesn't bother me to have no hair. My head is really smooth and shiny and my Mom and Dad like to rub it all the time!

It got really long staying in the hospital. After each round of chemo I had to wait for my counts to be high enough to go home. It was never for very long, but I loved to be at home with my whole family together. We would always do really fun things like go fishing and drive around the temple. I could't be around anybody else except for my family. That's okay because I really love all of them and I know they really, really love me too!

When my last chemo finally came I was so happy! We had a huge party in the hospital. Me and my mom made a pinata and we broke it open with some of my other friends who were sick like me. Grandma made me a huge cupcake Cake! I sprayed silly string all over. We took a lot of pitures too. All the nurses sang me the "happy last chemo song". It was a really good day!

When the day finally came to leave for good I was so excited! My mom kept crying, but she told me she wasn't sad, she was happy. I got to ring a bell that meant I was leaving and never coming back to stay ever, ever again! My mom held me up and I rang it three times! Everyone clapped for me. It was kinda sad to leave all my friends that I made there. I was more excited to be done though. I only have to come back to get check-ups.

I came back to get my Bone Marrow checked and they told me I was in remission. Remission means that all my leukemia blasts are gone and my normal cells are growing again. This means I am Cancer Free! My mom tells me all the time that I am so tough. My Dad calls me one tough bug! The only thing I have to do know is to get my central line removed. Now I get to be back at home and get to be a kid again. I don't have to stay at the hospital anymore. I only have to go every month to get checked and make sure I am still way healthy! My mom says that thing better stay this way because we don't want to have to go back to the hospital anymore! My treatment took a very long time. It was really hard too. I missed seeing my friends. I missed being in school. I just want to be healthy again. My mom calls me her hero. She said I never let this cancer get me down. She even made me a superbug cape!

I fought way hard and I finally kicked my Leukemia Cancers Butt!!!

I have nothing but a bright future ahead of me. My mom told me that Spring time is the best time for new things to start! That is me! I'm starting brand new right now!

Super Taylie Bug

my bug tunes