Super Taylie Bug: May 2010

Monday, May 24, 2010

My clinic week

My mom came to me and told me that I have to go to the clinic soon. On the 18th of May 2010 which was a Tuesday. That means I have to get an arm poke again so they can do a CBC on my blood. I really don't like doing this. I cried a lot while my mom tried to calm me down. We then made a list of all the bad and good things about having to go to clinic and get poked.

The Good List

1) I don't have to have my central line anymore
2) I can have a ton of water in my bath and I can go swimming now
3) I don't have to worry about getting an infection in my line or breaking my line
4) I don't have to stop playing to get my line flushed
5) I only get poked once a month
6) They give me stickers and a prize for being brave

The Bad List

1) I have to get poked

We talked about this for a while and I realized that it really is much much better being line free! I know I can do this again, I can be brave. My appointment was at 2:00 and we had to go to the lab to draw my blood at 1:30. And I sat on my Mom's lap like usual. She talks to me about fun things that I like so that it distracts me from what is going on. It always hurts though when they stick me with the needle. I really don't like it, but it was really fast. My Mom always says after that we're done for another month. Yeah!!

Then we went upstairs to clinic. They are always so friendly to me. Everyone liked my hat. My hair is getting kinda longer now so it is getting pretty tight. It's my favorite hat though! I jumped on the scale and I weigh 16.3 kilos and I measured 41 inches. They always check my blood pressure and it was right where it needed to be also. I look at my mom and she just smiles big and always tells me I am so super amazing! My mom remembered to bring the camera today, but just forgot to take it out to take pictures. I going to have to talk to my crazy Mom about doing better. Sorry!

My lab counts came back really good. Here is what is going on for me.

Red blood count or HCT is 39.7 Normal range is between 34.0 and 40.0
White blood count or WBC is 5.5 Normal range is between 5.5 and 15.5
Platelets count or PLTS is 140 Normal is between 150 and 400
Absolute Neutrophil count or ANC is 3.1 Normal is above 1.5

So as you can see here my body is doing good. I am almost in range on everything. Things should get a little better with more time. My Mom was so happy to see these number and that means that I am too!

I feel really good. I am very happy and very healthy right now.

After clinic I wanted to go and say hello to my friends up on ICS. I barely made it into the unit when I spotted my favorite nurse, Irish! I tried to sneak up and scare him but her turned around right at the last minute. I laughed and laughed and teased around with him. It didn't take long before other nursed heard me laughing and came to see me too. I wanted to go and play with all the toys. My Mom wanted to talk to a bunch of people. Then we went to see my friend Brooks. He has the same diagnosis as I did. AML leukemia. He is doing his last round of chemo right now. That makes me so happy that he is almost done and gets to leave the hospital so soon! I think it make him happy to see me too.

We stayed for a little while and then my Mom wanted to go. I wanted to just ride the bikes around all the hallways. Eventually I gave in and we said good-bye! I can go and visit next time. We had to park our truck on the very top floor. It was raining so hard outside. We ran super fast to the truck but still got really wet! The best part about right now is that I get to go to my grandma's house and stay until Friday. Yippee!!!

I love to play on the trampoline and in the play house.

If we are good then we get to go swimming too! My Uncle Heber is getting married on Friday. My Mom is helping Grandma Jeanne get everything ready for that. My Dad will come down for the wedding on Friday. I get to see all of my cousins again too. It is so much fun to play with all of them. I don't get to see some of them all the time because they live too far away from me. I love them all very much!!

We had a big Bar-B-Q on Thursday night for the wedding dinner. When Kristina threw her bouquet I got to catch it. That made me really happy! She gave me a really cute bag of treats too! We ate a lot of cake and ice cream after they had a really big fight with it.

We had a lot of fun tonight. Tomorrow is the wedding. None of the kids get to go, but it's okay because some really neat friends of my Mom are coming to watch is all. We had to go home really late on Friday night. I was so tired and I slept the whole time in the truck. It rained really really hard my Mom told me.

I am so happy that I can be Cancer Free right now. I have missed out on so many things. It is really fun to be a part of so much again. I am a pretty lucky girl!!!

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

Monday, May 24, 2010

My clinic week

One-Tough-Bug!!!

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