crazy fun with Casey

I had to say goodbye to one of my favorite nurses today……Miss Casey!  We are hoping it is just for the summer while she gets some clinical hours done and school work out of the way….but boy was I sad to say goodbye.  She always puts up with my craziness and my Mom always tells me how patient she is with me.  I am not totally sure what that means but I sure do love her and she always holds my hand when they access my port.  She is the best at that.  And at being crazy with me!  Hope to see you soon my friend ;)
 

 

twinkle…oh twinkle!

I had memorized it….and practiced it at least 100 times….and now it was my turn to get up on stage in front of all of those people (I was a little nervous!) and show them what I have been learning these last few months at my guitar lessons.  I think I did a pretty good job and more importantly, I had fun and was proud of myself!
Make sure you take a peek at the video :)
 

 

 

 

 

Camp TLC

I had an AMAZING time at my very first time at Camp TLC.  This camp is put on by the Lombard Juniors group and allows a child with cancer  (like me!) and a sibling (like Claire!) to participate in a week long, active, fun, and super exciting camp.  Some of my favorite activities were going to an indoor water park, a visit from the fire dept, taking a trip to the Shedd Aquarium, tons of fun crafts and scrapbooking at the end of the week (yes, they had a full time photographer that took tons of fun pictures of each of us!!!), lots of good eats (and junk food) and just fooling around with the other girls in my group and all of the counselors (we each had one that was assigned to us!)
Let's just say I had so much fun that I cried our last night when I had to say goodbye to everyone and have told my Mom about 100 times that I can't wait to go back next summer!

 

 

 

 

 

 

sending prayers

Our most wonderful and amazing music teacher and good friend, Miss Christy, lost her beloved husband to a rare and agressive form of cancer this week.  We are so sad and send all of our peaceful and healing wishes to her and the family.
Cancer just really...really stinks!!!
 

queen of ANC

I am happy to report that they told me at clinic on Thursday that my ANC is 2000.  WOW!  So, what does that mean you may ask?  Well, it means that my body is handling the new and improved regimene of daily oral chemo quite well.  I am now at 75% for both of my oral chemos….methotrexate and 6 MP, which is good.  The docs really want me to be at 100% for both so they told Mom they will watch me for the next 6 weeks or so to see if my ANC continues to be strong.  If it is, they will increase one of them to 100% and then eventually the other.  We are just hoping that my body continues to tolerate the meds well and who knows….I may be to 100% for both meds sooner rather than later.
Oh…and last week was my music recital and dance recital so it was an extra big week for me!  More to follow on those two fun and awesome events soon…..
 

new career calling

So, I think I may have a new calling.  I really wanted to be a mom who works in a doctor's office….or more recently, a singer….but how about an "appointment maker"?  This is my new job at clinic and Theresa lets me take over her job almost every time I am there.  Now, I am not really taking appointments but my friends there (especially Casey and Theresa) really let me pretend that I am an official "appointment maker".  And a lot of times they even get the docs in on the fun :)
 Hey, would this be the same as a mom who works in a doctor's office? Cool!
 

 

Call me crazy

I was just so happy that I have hair this time around for crazy hair day at school!  Mom had fun stylizing for us :)
 

got that blah kind of feeling

Well, last Thursday at clinic was a fun day in a lot of ways but not so fun in many other ways.  Mom and I both lost the bet on which doctor was going to be there and our long lost friend…Dr. Canner…who we NEVER get to see….surprised us and was the doc on rotation at CDH that day.  Yea!  He is what we like to call a "hoot" and honestly makes clinic feel like a really fun, crazy experience.  And Mom could sit and talk to him for hours about his foundation (Cure It!)….childhood cancer…..his family…..yoga….you name it.  He is just a really cool guy and a great doctor.
Now onto the "not so fun" part of my clinic day.  I had to have 4 different kind of chemos that day and also had to start my steroid burst.  YUCK!  So, needless to say, I have felt pretty yucky since then.  Everything in my body seems to hurt at one point or another and I am hungry all of the time and I get really emotional and kind of crazy.
So….I am hoping I will feel better as the week goes on and my guitar recital is right around the corner.  I have to be feeling more groovy for that!
 

almost a 1st grader!

2 more days and counting….
Well, this certainly has been a year of ups and downs for me but I have to say….my time spent in kindergarten was definitely one of the ups!  I learned how to read and write pretty darn well and I am tackling new math problems every day.  I made lots of new friends and still kept my "old friends" close by.  And then there is Mrs. Romano…..well, she has certainly been an angel in my life this year (my entire family's life).  She seemed to make all of my yucky days seem that much brighter and happier.  And boy, did I learn a lot from her!

 We performed a fun musical program for all of our friends and families called, "a walk through the kindergarten year".  I really do think I want to be a singer/performer when I grow up.  I love it!  And of course I still want to be a mom who works in a doctor's office :)

batter up!

Did you know I am a switch hitter?  I just learned what that meant last week.  I am by nature a "leftie" but I forgot and batted like a "rightie" and hit it just as hard as I would have the other way.  Pretty neat!   Now, I just decide how I am feeling and hit it whichever way I want.  I think I may get that cool trait from my Grandpa~
 

 

 

 

rainy day update

Well, I am holding steady on my chemo regimine and my ANC was 1900 at last clinic visit.  It has been as low as 200 so that is really, really awesome that it is so high right now.  I am still not feeling great all of the time but still feel good enough to dance and sing and twirl in the rain.  Now that is fun!  The docs have already warned my Mom that they will increase one of my chemos next clinic visit (next Thursday).  She wasn't all too happy about that news.  But for now, we will enjoy the lower chemo doses and  a new ballerina umbrella certainly helps to put a smile on my face :)
 

bears galore!

My Daisy friends and I had such a fun time at Build a Bear for our "reward outing" for being so awesome at selling Girl Scout Cookies!  I had actually never been there before so it was really neat to see how the whole thing works.  I named my bear Minty because she smells like thin mints.  Can you believe that?  And she has a Daisy vest just like me.  Pretty neat.
 

 

 

 

 

 

photo shoot

My brother and sister and I sure had a lot of fun during our most recent photo shoot with Aunt Kristi.  I think there are some keepers :)

steroid burst

Once a month I need to take an icky medicine called dexamethasone….aka….steroid.  It doesn't really taste icky but boy, does it make me feel icky and act icky, too.  The docs and nurses at clinic call it a "steroid burst" because I take 10 doses of it over five days.  It doesn't seem like too much but the side effects (moodiness, weight gain, contant hunger, achiness, etc…) seem like they go on forever.  Did I mention it makes me feel icky???  As you can see by the expression on my face, I am not a big fan.
The leukemia cells aren't, either.  It kills them.
That is a good thing.
 

Chloe's Golden Birthday

Dear Chloe Belle,

I know we say this every year but it is hard to believe you are 6 years old!  And this is your golden birthday.  You turn 6 on May 6th.  Fun!

You are nearly a kindergarten graduate and always keep us on our toes.

You are sweet, sassy, loveable, funny, sensitive, and did I mention sassy???

You love school and reading and art and anything having to do with music.  You can play the guitar now...and really well!  You love to sing and dance dress up and play princess and pretend to wear make up.  Let's just say you are a "girly girl".

But you can also get dirty playing in the yard....or playing softball......or you can show your serious side when you are showing off your moves in tae kwon do.

And then there is TV.  Let's just say you really enjoy watching it (limited time of course!) and you are all about the "tween Disney shows".  Shake it Up...Austin and Ally....or even Jessie.  What ever happened to Dora and Diego?  Ha!

Friends are always around you and your brother and sister both adore you.  You are well liked by so many.

You are the bravest little girl we know and it's fun to see you make all of the doctors and nurses at clinic laugh with your fun sense of humor...even when you are being treated for cancer.  You have been described as a "breath of fresh air" at clinic and we couldn't agree more.

We certainly love you a lot and wish for you nothing but health and happiness in the upcoming year. 
 Happy Birthday sweetie :)

Love,
Mommy and Daddy