Friday, Dec. 28, 2007

We've had a pretty busy week, as I'm sure the rest of you have also. Colby and Hannah really enjoyed Christmas, especially with our secret santa, a scavenger hunt from santa on Christmas day, and having Grandma and Grandpa and Sydney here too. Hannah asked me when package #13 was coming (on Christmas Day), so I had to explain to her that it was the "12 days before Christmas." We never did find out the identity of our friendly secret santa, although we have a few ideas on whom it may be.

Hannah has not felt well this week. I guess I was hoping for some drastic and quick change after chemo, but I realize it is going to be a very long road still ahead until she feels better. She is complaining constantly of stomach pain/nausea. The doctor prescribed a new anti-nausea med this past Monday. He said it's not uncommon to see medicine begin to lose it's effectiveness after being on it for so long. Hannah has been on Zofran for 10 months, and it doesn't seem to work as well for her now. It wears off quicker and isn't as effective over all. After days of contacting the insurance company, we finally got a special approval for this new medicine. At first they only wanted to approve 6 pills a month (it's a daily pill). I guess Hannah is only supposed to feel sick 6 days out of the month. They did finally approve for what the doctor wrote for, which was 30 pills for months. However, I did find out that approval means she can get the medicine but they pay nothing towards it. So, why did we even need their approval? I wouldn't mind as much if it was a couple hundred dollars a refill, but it's a couple thousand. We're trying it for a month to see if it helps. If it does, then it will be worth it. Hopefully our new insurance will cover it, and that will begin in the next couple of months or so (if we can get approved for insurance, that is.)

So in the meantime, I try not to dwell to much on her eating. She is completely off the appetite stimulant, which is good, but I don't know if her dramatic decrease in eating is a result of the latest chemo or the removal of the appetite stimulant or both. I started tracking her calories today, and she ate just over 700 calories for the whole day. She needs much more than that, and even double that would be good for her. She lost nearly a pound and a half last week, so I don't want that trend to continue, but I also can't force her. I am trying all the tricks right now, I snuck in some heavy cream into her chocolate milk today, and did get her to drink a whole cup of that this morning. She just doesn't feel like eating, doesn't want to eat and has absolutely no interest in food. Even the old favorites are being rejected now.

We go back to clinic on Monday, so we can just hope that her counts have not decreased again, and her weight has not either.

I would like to say thank you to all of our friends and family that have been there and supported us this entire year. It will be a year this January that Hannah was diagnosed with brain cancer and all of our lives changed dramatically and permanently. We could not have made it with all of your love and support.

I'll post some new pictures in the next few days.

xoxo Kim

5 comments:

Anonymous said...

Dear Hannah,
Thank you for the wonderful Christmas card you sent here to Massachusetts. We loved your drawing of Santa flying through the sky with the reindeer pulling his sled. You are a very good artist. Of course we also loved the photo of you and Colby with Riley and Tod. We are happy that you had such a nice Christmas with your family. We have just returned from Cape Cod where we celebrated Christmas. Santa brought lots of toys to our grandchildren. Hannah, we hope you'll try to eat a little more each day to get strong again. You know that will make Mommy and Daddy very happy.
Love from the Griffins.

Anonymous said...

Happy New Year Prokops!
2008 is going to be a wonderful year for all of you, I can feel it. It will be filled with LOTS of positives...Hannah Banana, I hope that you find your appetite soon, at least a little. Think about your most favorite thing to eat and then try a little. Then a little more. I know that you are trying your best, which is lots better than most people could even attempt! I am happy that you had such a lovely Christmas with Grams and Gramps and Sydney. I think of you often, and pray for you everyday. Prokops you are the best!
Love you all
Lots
Mrs V

Anonymous said...

Hello Hannah,

I hope you are busy making lots of platelets and white blood cells. We keep telling Caroline that is what she needs to be doing. Tomorrow you are both going to have great numbers to start 2008...because it IS going to be a GREAT year!

Love,
Caroline and her Mom- Sarah

Anonymous said...

I second that last post!!
Here is to two remarkable young ladies, and may 2008 give us all what we want!
With love to both Hannah and Caroline, our inspirations who deserve all the best in 2008 and FOREVER!!!!
My love and prayers always,
Anne Salice

Anonymous said...

Have you tried the Goya fruit drinks with Hannah? Mango, guava, etc. My mother was on chemo and she drank those goya drinks daily. That was about the only thing she could get down. Hang in there and good luck.