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 :)

 

kindness abounds

A very kind and touching gesture from my dear friend's Dad, who is going to be able to grow a mustache now because in one day he has already gotten to his goal of $100.00. He is very happy about that :)

A story…

I was a volunteer coach for a summer T-Ball league that my oldest, Kaiya, belong to during the summer. She quickly became friends with a little girl, Chloe, who was going to be in her Kindergarten class for this upcoming school year. Chloe seemed like any other 5 year old little girl. Loved to talk, ignore the coaches, and tell jokes that only another child would truly find funny. Towards the end of the T-Ball season we were shocked to find out that Chloe was suffering from Leukemia. Chloe would go on to miss practices and games because of her cancer treatment – chemotherapy. Chloe did get well enough to start school on time and my daughter and Chloe continue to be the best of pals.

I am asking for anyone who enjoys seeing me make a fool out of myself to please make a donation or pledge a donation to Face It, Fight It, Cure It. From what I have been told, one of the doctors that has been treating Chloe runs the foundation and its main purpose is to cure pediatric cancer. I bet if raise at least $100 my family would agree to my entry into the mustache contest and thus giving everyone a bit of enjoyment.

I will place a sign-up sheet in the kitchen for anyone who is interested in pledging a donation. Feel free to contact me for further information or visit the website to learn more about Face It, Fight It, Cure It or to  make a donation immediately.

Chloe and Kaiya

Hallie Ballie

This is the name that we used to call you.  It was cute, just like you.  You truly were the best pet a girl could ever ask for and I will miss you more than you can ever know.  I love you sweet girl.   I hope there is lots and lots of flowers..and sunshine...and fun play for you outside in heaven.
 

 

 

 

 

Peanuts and gang at MSI

Many of you may remember that when I was first diagnosed with Leukemia back in February, all I wanted to and would watch in the hospital that week was anything that had Snoopy in it.  My Dad even went and bought some of the obscure Peanuts DVD's that we didn't own, including "You are a good sport, Charlie Brown" and "Happiness is a Warm Blanket".   I still love Peanuts and gang and really loved the new exhibit at the Museum of Science and Industry.  It was amazing!
Oh...and did I mention that our friends from playgroup happened to be there that day?  That made it even more special.
 

the taste buds... they are a changing…..

The doctors have told me before that my taste buds just might change, and by golly, they were right!  Now, don't get me wrong, I have never liked fruits or veggies (so, let's just say this Daisy meeting wasn't a lot of fun for me :0) but I have always like sweets, including cakes, cookies, candy, etc.  For the longest time, I wouldn't touch any of those things and just wanted protein (i.e. cheese, milk, chicken, etc.) and now I am slowly but surely getting back into actually enjoying those sweets.  It will be interesting to see where my taste buds will take me next.  Maybe there is hope for those fruits and veggies I so despise?????

 

Grateful

"Thanksgiving Day is a jewel, to set in the hearts

of honest men; but be careful that you

do not take the day, and

leave out the gratitude."

                                               E.P.Powell

A friend of my Mom's shared this quote with her and she thought it was kind of neat.  As most of you know, this has not been the greatest year for me and sometimes it is hard to be grateful when you aren't feeling good but really, there is so much to be grateful for.
I am most grateful for all of the love and support of our families and friends.  Without them, I don't know where we would be, especially in these rough times.
Happy Thanksgiving to everyone and remember to think of at least one thing that you are grateful for today.

 

rudolph and IVIG

Well, some positive news is that Rudolph will be bringing Santa to our house soon.  I am awfully excited about that!!!
And what might you ask is IVIG?  Well, I found out for the first time at clinic this past Thursday.  A friend of mine from ballet class, who ironically just stopped treatment for kidney cancer, was diagnosed with the chicken pox.  Luckily, her mom got ahold of my mom so we could let my docs know.  What does the chicken pox have to do with me you might ask?  Well….in the world of leukemia…..low blood coutns….chemotherapy….the chicken pox could be really, really bad…possibly deadly... if I were to get it.  Yes, it really is that serious.
SO….a two hour routine trip to clinic for chemo turned into a 6 hour stay in the pediatric outpatient floor of the hospital.   The doctors wanted me to have something called IVIG (aka….Intraveneous Immunoglobulin) which is a special blood product that boosts my immune system.  And the infusion is supposed to only take a few hours but it took a little longer.  They needed to watch me to make sure I didn't get any weird allergic reaction or breathing probelms.
Luckily, I didn't.
Actually, I slept through most of it so that was nice and I sure am thankful for the many people who donated their blood so I could have this infusion.

 

messterpieces

I love….love…going to my art class on Mondays after school with my buddy Liam.  We do the coolest things like fly-swatter paintings, salt masterpieces, and even balloon smashing works of art.  Who knew there were such cool things?

 

 

 

 

 

 

Halloween happenings

Halloween was filled with parties, festivals, pumpkins, trick or treating, candy and of course lots of FUN!!!!!!

hair accessories

My good buddy, Kaiya, made this adorable barette for me and I thought it was so cute but I literally started jumping up and down when I figured out it actually clipped in my hair!  Yes…my HAIR!!!  I felt like a million bucks (not sure what that means but is sounds good to me!)

 

Bald and beautiful

Here are some pictures of my Daddy (and a video if you are really interested http://www.youtube.com/watch?v=DfJFPwJBG88) getting his head shaved to raise money for St. Baldricks.  I think we look pretty cute together myself :)