Monday, December 10, 2012

Let it Snow!

I'm loving the snow outside. It's what makes me sooooo happy in the winter!  Well anyways, last week my GGT <--(an enzyme your liver releases when it's toxic, as mine has) went down, it went far enough I was able to start my chemo again, BUT I had to move down to the lowest dose. Which is bad, because now if my GGT goes up for another 7 days, then I'll have to stop the Crenolanib<--(my chemo) for good. And obviously that's not a good thing, cause it's my only treatment level left to be able to stay in the clinical trial at St Jude. So anyways this Wednesday, I have an appointment with my Primary Children's doctors, I guess just to get my blood drawn, and they'll probably do a neurological exam. Then it'll be Christmas, then we go to Hawaii on the 30th, then January 13-15th it's back to Memphis! So there's the updates, thank you for the prayers! They're always welcome, not to mention needed!:)
Rach

20 comments:

  1. Good luck with your tests Rachel...your always in my prayers.

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  2. Love you. and God bless.

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  3. I wish you all the best...I will always pray for you as well!

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  4. Good luck! We'll be praying for you!!

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  5. Rach (is it okay if I call you that? It's the way I think of you because it's how you sign off your blogs.),
    I just found your blog tonight (well, it's 3 am, so it's actually this morning). You have inspired me. You have made me realize that I, too, can do hard things. I cannot begin to imagine what you and your family are going through. Your honesty through all this is incredible, and I wanted to thank you for it. Thank you for posting and letting your mom post on your behalf. I think you are beautiful, inside and out, and your spirit shines through all the physical drug side effects; I wanted to let you know that. I will pray for you; you are now a part of my regular prayer life - I wanted to let you know that, too.

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    1. Thanks so much:) I've been blessed by your comments on my blog, and long story short a news reporter is wanting some emails and numbers of thoswho found my story and blog/cancer journey inspiring. He needs contacts soon so if you'd be interested in some type of an interview, please let me know:)

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    2. Ps my email number is 8013188101 and email is rachelelysestratton@gmail.com

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  6. Oh, also, I'm pretty sure you and your family know this already and probably have mountains of information about different treatments, but I just wanted to make sure you knew about a new (what they're calling "milestone") clinical trial being opened to DIPG patients between the ages of 3-21. It's a new surgical technique. Anyway, just in case the news somehow didn't reach you all yet, here's the link to the site where I found the information: http://cornellneurosurgery.org/pedneuro/dipg-news.html

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    1. That's interesting! We're checking up on it!

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  7. The Merriest Christmas to you and your family Rachel. Have a good relaxing trip!!! Aloha!!!!

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  8. You don't know me, but I have been inspired by your optimism, humor and courage. I hope you and your family will have a merry Christmas, and a wonderful trip to Hawaii! My prayer is that you can put every care and worry aside, and focus completely on nothing but FUN! Can't wait to hear all about it when you get home! Take lots of pictures!

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  9. I hope you love Hawaii! I love the island spirit.

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  10. We are forever and always thinking and praying for you and your family. Enjoy Hawaii and we hope your Christmas was wonderful ( we were all gone to Monica's ) I/we live you dearly,

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  11. Rachel and Family,

    I hope you had a beautiful Christmas and are having a wonderful time in Hawaii!

    Continued prayers and love,

    Jaimi

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  12. Hope you had an amazing trip! I keep checking back for updates! Can't wait to hear all about Christmas, New Years and Hawaii!!!

    Keep Smiling,
    Vicki

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  13. Hi Racheal i think your brave

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  14. I love your blog!

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