sassy pants

This is a picture of me from a long time ago and my Mom thinks it is really cute and kind of funny.  She says I look "sassy" so I asked her what that meant.  She told me it is very similar to how I act in clinic sometimes when I tell the nurses it doesn't hurt or just laugh off a shot....or don't cry and just shrug my shoulders when something hurts.
So, we were at clinic again this morning (remember....two weeks of daily chemo shots....lucky me!) and the nurses asked me if I wanted some "freezey spray" where they were going to give me my shot so that it didn't hurt as bad.  I looked at them and kind of chuckled and said, "uh...no, I don't need it".  After many questions and some surprised faces, they went ahead and gave me my shot and I didn't flinch.  Nothing new there.  And then Miss Trina asked if I could make a video showing other kids how to act so brave and I said, "well it isn't that hard".  She looked at my Mom and said, "look at Miss Chloe...sassy little thing." :)
And we all had a good laugh. 

 

on top of the world

I am just so excited to share with you that I had a great week and am feeling really super duper!  Strange because I am going through an "intense part of my treatment" and the docs told me and my Mom that I may get really sick.  I will admit, it wasn't exactly the most fun way to spend my week going to clinic every single day…and getting shots of chemo in my leg….but I think I surprised everyone…even myself!  I felt really great and so we had a lot of fun and enjoyed every single minute.

Some of the highlights inlcuded playdates with friends, movies in the park (thanks Miss Katie!), seeing the Tree House Tales at the Morton Arboretum, swimming, feeding the ducks, discovering new parks, lunch at Chuck E Cheese, shopping trips (think fun accessories!) and just loving life!

Butterflies abound

This is a picture of me and my big sis at the cool "Bugs!" exhibit at Brookfield Zoo.  My mom took this picture the day after I decided to shave my head.  I wasn't feeling good at all and sat in the wagon most of the day, but I still enjoyed seeing all of the beautiful animals (and things) at the zoo.  This butterfly was my favorite, though. A very good friend of my mom's also recently gave her  a pretty special "butterfly themed" gift that made her cry.  I have told you she kind of cries a lot sometimes, right?
Anyways, my mom really liked this quote about butterflies and their symbolic meaning (not sure what that means but whatever...) thought it would be fitting to add it to the post :)

"The Butterfly is known for transition and change, symbolizing our soul. A butterfly's life span is about a month, and in that short amount of time they go from a caterpillar to a Butterfly. The butterfly spends its entire life changing and adapting. It first learns how to crawl, then it learns how to fly.
Its is said, when a butterfly crosses your path your life is going to change. It may be the simplest change, or a monumental change.... but it is there to let you know that you are transitioning.
Butterflies are beautiful, they enjoy everything beautiful in the world. They flutter on the slightest breezes and they live off of flowers and plants. When you see a butterfly, it is a reminder to enjoy the smallest things. To remember that life is short, and yet filled with beauty."

{hubpages.com~by Eric Gorney
 

chillin' with my girlfriends

I had a great time jumping and bouncing and painting with three of my friends from pre-school.  "Good days" (i.e. not feeling sick or tired from chemo) are such a special thing and we are so very grateful for them.
Here's to lots more "good days"…… :)
 

 

 

hope

Some very special friends of ours recently gave me this book and it is my new favorite.  Claire and my Mom and I read it several times a day and Claire even shared it with her fellow campers last week at the Arboretum.
I think the "Tree of Hope" is our favorite:
"I am the tree of hope,
I welcome morning's ringing light,
dream with crescent moons at night,
expect the joy the rainbows bring,
anticipate unfurling spring."
Ahhh...yes....hope certainly is a beautiful thing.
 

"tea club"

Everytime we are at clinic (which has been everyday lately because of the chemo shots I have been getting), our friend Miss Theresa or Nurse Debbie makes us a cup of tea.  Of course my brother and sister and I can only drink the herbal teas, with no caffeine, but they are really, really yummy.  My mom is really into it now and we went to the tea store (Teavana) a few weeks ago to get started with a pot and some loose leaf teas.  When we were at clinic today, Miss Theresa had a gift for us.  We had been talking about going to another local tea store (Adagio) for weeks now and hadn't made it there. A gift for us???  Well, she surprised us with our own little diffuser (the fun kind that they use at clinic where you pop it right on top of a glass and it automatically pours out)  and some raspberry tea (my personal favorite!!!)
So, they decided we are oficially a part of the "tea club" at clinic.  There are those coffee drinkers, too, but we consider ourselves a little cooler (and more fun!) than they are :)
 

 

new swim cap

My mom ordered me these cute swim caps from the same company (http://www.4women.com/fabrics/girls/) where some of my favorite scarves are from.
Half the time, though, I take it off when we get to the pool because it is much easier for me to just be a "free bird", as my Mom and Dad like to call it.
After all, bald is beautiful!!!
 

 

Flashes of Hope

There is this amazing organization called Flashes for Hope, that we recently had the chance to work with.  Actually they took some beautiful pictures of me, my sister, my brother and my Mom, all for free.  They are a group of professional photographers and makeup artists who donate their time to photographing pediatric cancer patients, i.e kids like me who have cancer.
Claire and I really, really loved getting a little makeup put on.  Sparkly….pretty….fun! And everyone thought I looked pretty snazzy in my new yellow scarf that Grandma and Grandpa bought me.
For more information on Flashes of Hope visit their website:
http://www.flashesofhope.org/
We think they are pretty darn neat!!!!
 

 

 

chemo marathon......done....check

I survived my chemo marathon....yipee!  My mom and I were there from 9-4 and I think I got like four or five different chemos, along with a spinal tap and four hours of hydration (via the IV).  It sounds really bad but actually it wasn't all that bad.  I found a new way to wear my head scarf.....side ponytail we like to call it....and I had my I Pad ( a must when you are at clinic!) and Miss Theresa (love her!!!) made me some tea on the way out.  We have become a part of the "tea club" at clinic :)  Very fun!

 

 

 

Tap it for a Cause~Thank You!!!!!

Many of you might remember a pretty neat event that happened last month and was held in my honor.  It is called Tap it for a Cause.  Some really nice folks from my pre-school got together and had a party/fundraiser for me and my family.  This is the picture they had up at the event and they also had everyone that attended write me a little note.  I keep them right next to my bed and look at them all of the time.  And look at the cute tutu they gave me, along with matching flip flops.  Now if that doesn't make me feel like a princess, I am not sure what will!
And guess what….they raised $2000.00 and gave the check to my Mom and Dad.  My folks in turn gave the check to Dr. Canner (one of my favorite docs at clinic) and his foundation….http://www.faceitfightitcureit.org/.
He was beyond thrilled and a little speechless.
Thank you…thank you…thank you so much to the Tap it for a Cause committee and participants.
Your kindness and caring ways will never be forgotten.
 

 

a great week!

I had such an awesome week and felt like I was on top of the world.  I had a break from chemo (and any other meds they might have wanted to send my way) and my side effects from the last treatments seem to have gone away.  Yipee!  So, we took full advantage of my "feeling groovy attitude" and had lots of fun with friends and playdates and just enjoying the little things.
Think good thoughts for me as I head into two weeks of pretty yucky treatments…..
 

Quack, Quack!

Sometimes when I am not feeling too good, something as simple as feeding the ducks with Aunt Kristi and Claire can make everything seem that much better.....

Biscuit

Guess what?  I finally got my very own pet (let's call it a very late birthday gift), a hampster that I named Biscuit.  Now, our house is not a "pet free zone"….we already have two cats, Halle and Cosmo.  But my Mom and Dad have been promising my sister and I that we could get our very own pet for about two years now. That is a long time.  And then we weren't sure if the docs would let me get a hampster because of the germ/disease factor but they said it was ok.  I just have to wash my hands a lot when I am around them but I already do that.
Yah for pets!

 

Oh...and by the way...Claire got a rat and she named him Ratatouille :)

I see…..

I had been complaining that I couldn't see very well….actually things far away were pretty blurry….so my Mom took me to the same eye specialist that Blake sees.  She was really nice and I am happy to report the chemo has not done any major damage to my eyes (nerve damage, cataracts) and the doc says I have 20/20 vision.  She thinks maybe the blurry vision is a side effect from some of the treatments I have gotten and we hope it just goes away someday.
So you are probably wondering about the picture below.
Yes, in fact I did fall asleep while we were waiting for her to come in after they dilated my eyes.  My mom thought it was pretty funny.  I sure didn't when they woke me up, though :-0

 

chemo extravaganza…postponed

Clinic was a bust today.  Got there bright and early and they checked my blood counts but they had to give me some medicine in my port first (which took like an hour or so) because they couldn't access it.  Very strange! I guess there is a first for everything!
After they finally accessed my port and sent it to lab for readings….they discovered my ANC was too low to have the already scheduled "chemo party".
Bummer!
It had to by 750 and it was only 200.  At least it wasn't 0.
But as my mom's friend pointed out, "at least she will feel good for another week!"
And we will treasure every minute…..

 

turning the "road map" page with Daddy

I turn the page in my road map tomorrow.  It won't be a great time for me because the Delayed Intensification (part two) will be pretty intense.  Tomorrow I will be at clinic all day and my Dad took the day off of work so he could go with me.  It is really nice to have him there, especially on big treatment days.
Tomorrow is a "procedure day" for me so they will give me meds to make me a little goofy so they can inject chemo (intrathecal methotrexate) in my spinal fluid.  And that is just the beginning.
Then I they will need to hydrate me and make sure I have plenty of fluids so I can take another kind of chemo called Cyclophosphamide.  They will need to watch me for a couple hours afterwards to make sure I stay hydrated.  Apparently, if I don't, it can cause some big time problems with my intestines.  Fun.
I will also get two other types of chemo called Thioguanine and Cytarabine.
Oh my!
The docs say I can get really sick from these chemos and feel like I have the flu.  I am really hoping that it doesn't happen to me.

Oh, by the way, my Dad turned the big 40 a couple weeks ago. My mom says he is oficially "over the hill" like she is :)….whatever that means!

 

bye bye hair…hello cute head scarves!

It took four months for my hair to start falling out but if finally did.  And boy was it everywhere!  After a long day at clinic on Monday, I finally told my Mom I had had enough…..of the hair everywhere that is.  So, we decided it was time to get rid of it.  Now, don't get me wrong, I was very sad about it and my Mom and I had a good cry before we did it, but hair grows back.  It's not the end of the world.  Aunt Kristi went and bought some clippers and did the honors (who knew she knew how to do that??? she really is a jack of all trades!)
I was very scared at first that no one would recognize me and that people would stare and laugh but it hasn't been all that bad.  I am feeling a lot better about it.  And I have a whole lot of cute scarves, bandanas and hats that all of my friends and family have gotten me.  Pretty cool!
 

 

 

4th of July fun

It was a week filled with fun.....sun...friends......(and the occasional nap because I wasn't feeling too well) at the lake over the 4th of July holidays.  No fireworks this year because of the lack of rain but we still had fun :)

Brave

Dear Chloe,
We think this doll and the movie she comes from says it all.  Brave.  You are truly the bravest little girl we know and we are constantly in awe of you.  Not only are you an amazing little trooper when it comes to taking all of the yucky meds or going to clinic and sometimes being there for hours to get the chemo/blood counts that you need, but we were all amazed when the nurses accessed your port and I had forgotten to put numbing cream on.  You didn't flinch…or cry….or even complain when they stuck that huge needle in your chest.
Brave.
When you aren't feeling well and you miss a lot of fun things going on around you, you just take it in stride and maybe sneak off for a nap or ask to have a little "quiet time".  We sometimes forget you are only 5 because you really are that strong and mature.
Brave.
We are so proud of you sweetie!  Keep up the good fight!
 

littlest clinic companion

Blake's very first time joining me at clinic was kind of a funny story.  The hospital was out of power after the big storm so they closed our clinic and I had to get my chemo in the pediatric ER.  Bizarro world….especially since that is where I was first diagnosed with leukemia.  But it was fun to have my lil' bro with me :)