well balanced

At a recent Daisy meeting, my good friend, Lesley, came to teach us all about yoga.  It was so much fun and now I think I do understand why my Mom loves it so much.
Can you say calm?  centered?  It's a whole new way of looking at the world….and things that are going on in your life.
Namaste~

 

 

new adventures

This week will bring two new adventures my way.  The first is I will have my first spinal tap (post maintenance) because now I only need to have them done once every three months.  That is a good thing although I have to admit I am a little nervous about the whole thing since I am not really used to it anymore.
Wish me luck.
Secondly, my wonderful Aunt Kristi got me my very own guitar for Christmas!  Now that is exciting!  And even more exciting is that I start lessons at the music studio that Claire takes her violin lessons at this week.  I have kind of been digging the guitar for awhile now so it should be a lot of fun.
Rock on!
 

back on the ice

I am so glad to be back to something I really enjoy, ice skating!  I started taking lessons about a year ago, right before I was diagnosed with leukemia, but my ice skating career was short lived because I didn't feel well enough to skate most days but I started lessons up again this fall and I just passed into the next level.  Very exciting!

 

 

happy haircut

I was so excited that I actually needed a little hair cut (yes, that means my hair is really starting to come in!) and Miss Mikki (my wonderful hair dresser) gave me this cute bow to celebrate the special occasion!
Helloooo hair…….:)
 

Zoo lights

 One of my favorite holiday activities I did with my family was to visit the beautiful lights at Brookfield Zoo.  And at the magic show, guess who got called onto stage?  You guessed it, Moi.  It was a lot of fun!
 

 

The sun will come up tomorrow...

What a great song from a great play!
And whenever I sing the words to the song or hear them, it reminds me to keep a smile on my face and in my heart, too :)
 

 

Merry Christmas~

I hope Santa is good to you this year :)

 

Dear Santa….

This year I hope you will bring me some clothes for my American Girl Doll and the Tinkerbell movie, The Secret of the Wings.
As you know, I haven't been feeling very well lately because of the meds I am taking, so maybe you can bring some magic to me to help me feel better, too?
Love, Chloe

 

 

Game back on

We had a nice visit at clinic yesterday.  Our favorite doc was there and Mom had a nice visit with her about  all that has been going on with me since Maintenance started (yes, it has been that long since we have seen her!). As she said after she examined me…"Chloe, you are such a mystery."  Not exactly what you want to hear, especially multiple times, but at least she was honest.
So….my counts have recovered because of the break from chemo I had.  It is amazing what one week off treatment can do for a body.  My ANC is back up to 800, so that is good, and I am definitely feeling better.  So, I am back on the full dose of oral chemo at home and I get the bonus steroid burst for the next week.  Plus, I got Vincristine through my port yesterday.  Lucky me.
My Mom and Dad are a little worried that I am going to start feeling icky again but we are all hopeful that the chemo will behave itself and by that I mean….do the job of keeping the leukemia cells away and not make me feel so yucky.
Come on, chemo…work with me….:0
Wish me luck!
 

delightful Daisys

I love being a Girl Scout Daisy, following in my big sister's footsteps, and we always have so much fun when we meet.  From planting bulbs at our school, to listening to a police man talk about his job, visitng a local fire station, and discovering all about healthy snacks.  Next up….singing Christmas carols at a local nursing home and yoga!  There is never a dull moment when we are together :)

 

 

 

 

 

 

 

hold the chemo!

On the very same day that Mom and I dropped off all of our gifts to HSP for their Giving Tree (yes, that is me right outside the doors with the cute Santa statue) was the very same day that the docs at clinic told me "no more chemo" until further notice (aka…..next Thursday).  Why are they holding chemo you might ask?  Well, my counts have completely bottomed out.  Yes, my ANC is only 200 (should be over 1000), my platelets and hemoglobin are ridiculously low (so low I can't even remember the numbers!)  They tell me this often happens on Maintenance because my body is just trying to get used to the chemo pills everyday at home and less intraveneous chemo at clinic.  It certainly helps to explain why I have been feeling so sick and tired all of the time.  Dr. Hayani said it best, "Chloe, the chemo is working too good in your body so we need to take a little break."  I guess that is a good thing, right?  After all, I would much rather have the meds working "too good", rather than not working at all.
 

serious stethoscope business

When Miss Casey let us use her stethoscope and actually act like we were nurses, we couldn't have been happier!
 

 

 

 

 

pumpkins in December

I know it is December already but my mom and I were looking at some pictures and discovered these long lost ones and we had to post them.  Our day at the pumpkin patch with our dear friends brings back so many fun and wonderful memories... ;)

explanation

Well, my Mom and I did find out part of the reason I haven't been feeling well.  My counts are way down from the chemo.  Unusual, yes, but they haven't dropped low enough for me to stop taking my chemo or change the dose of it.  Bummer!  So, the docs want to see me again this week to draw my labs again.  In the meantime I just have to hang in there and I think it might be time to have a talk with this chemo and let it know it needs to give me a break already.

 

Maintenance musings by mom.....

We are about 6 weeks into the "Maintenance" portion of Chloe's treatment plan for leukemia. This part of her roadmap is about a year and a half and means she should be feeling really good, lots of energy, counts way up, etc.
 I would like to say, "so far....so good", but this definitely isn't the case.
Since maintenance has started, poor Chloe has felt sick.  Almost every day she complains of something (tummy aches especially....or a sore throat, pain in my legs, lack of energy).  Unfortunately, the list goes on and on.
On top of not feeling good physically, Chloe is very sad and upset these days.  I think the reality of having to go through what she is going through is finally catching up with her.  It is not fun to have cancer and I think she is pretty angry about it. 
So, Chloe continues to keep us on our toes and wondering, why has everything been the opposite since treatment has started?
When she was supposed to feel horrible, she felt great.  When she was supposed to lose her hair, she didn't.  When her counts were supposed to be way down, they were way up.  And now maintenance is supposed to be the easy part of treatment and it has been the hardest so far.
So....we continue to take it day by day, sometimes hour by hour, and we know happier days are ahead for Chloe, for all of us.
We can hardly wait to see that beautiful smile back on her face :)