Super Taylie Bug: on a roll

Wednesday, June 23, 2010

on a roll

It's clinic time again already. June 15th 2010. The month of May just zoomed by. Not that we've been doing anything! :) Disney World, Wedding, Flaming Gorge, Colorado, Idaho....and we stop at home right in time for Happy 5 Birthday Taylie!!!

We'll get to that later, but first clinic. My mom has been asking me a lot of questions lately. If I'm tired more. If I feel good. If I have any bruises. I keep telling her that I am feeling fine. I think she just likes to worry. I really don't like having to get my arm poked, but I told my mom I would be super-duper brave this time. My mom's friend Stacy came along with us. I think my mom wanted some help and some support. Stacy is my best friend Rachel's mom. We play like every chance we can get! Sometimes we get to go places together.

It is always a long ride to Salt Lake where the hospital is at. We like to sing silly songs the whole ride down. Mayzi didn't come today again. Sunnie did and I like to help my mom take care of her.

Today I am going to visit my buddy Brooks. He has AML leukemia just like I had. He is almost all done with all of his treatment. He is leaving the hospital so soon. This news makes my mom cry. She did that a lot when we left the hospital too. He was sleeping when we went to visit him. I left him the gifts I brought for him. I hope he likes water balloon and squirt guns and hunting and fishing stuff because that's what my mom bought him. I wish soon that I can go and play with Brooks and his family. My mom says we can as soon as he is well enough.

I had to go to the lab first to draw my blood. Guess what I did? I didn't even cry once. Not even a little bit. I sat on my mom's lap and it wasn't to scary today. Even though I don't like to do this I think it is getting easier for me to be brave. My mom couldn't believe it at all. She thinks I am super tough. I agree!

Once again my mom failed to bring the camera because it is being fixed right now. My mom keeps saying it needs to hurry up and come back to her. She really likes to take a lot of pictures all of the time.

There was a new person up on ICS we met today. Well, actually she was sleeping but I got to meet her parents. She had AML Leukemia also. She is a lot older than I am. She is 16. My mom spent a lot of time talking with her mom and dad. I went off to start a water fight with all of the nurses! I even soaked my mom by surprise too! I love it that I can see all of my nurse friends and get into fun, silly, wars with them. We played for awhile and them had to leave. It was getting later and I am ready to see my dad soon. So we left the hospital and drove home. First though we have to go see my Grandma Jeanne. She gave us something to eat and we got to visit with her for a little bit. I wanted to stay longer so we could go swimming, but my mom said later we would come back for that. The bubble was off and it looked so fun to me. I love to swim. I love to swim!

Oh, I forgot to say that my lab results were great. They showed no signs of anything abnormal and my numbers are doing good. My mom says that she will feel better when they move up a whole bunch more. The doctor told her that they will. We have to give it time. my body went through a lot with Chemotherapy. I didn't like any of that at all. I am so happy to not have to do that again! My mom started to act happier after the doctor talked to her. I don't think that she is as nervous as when we got here. She says that's just the way it goes. She also said that we never want to come back her again. Unless it is to visit and visit only. I agree!

So I'm on a roll I guess. I'm almost 5 and getting so big and so strong everyday!

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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

Wednesday, June 23, 2010

on a roll

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One-Tough-Bug!!!

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