Monday, October 7, 2013

Wait, whaaaat?

I've heard the saying, red sky in morning sailors take warning, but I had no idea that red sky at night meant delight. Cause.....


...I have no tumor!!!! It was scar tissue and inflammation. Hey-oooooooo. Also, we are pushing my MRIs out to every four months.

Although Dr Liau was very busy she helped us go through my pathology (apparently IDH1 mutation does have a better prognosis). She was positive about what I'm doing, and definitely on board with the Accutane, since it works amazingly with the IDH1 mutation. She worked on a clinical trial with Accutane and glioma patients a decade or so ago and it was considered a failure. But in 2008 scientists recognized the IDH1 mutation and when retrospective research was done, they realized that those in the trial with the IDH1 mutation way outlived their peers. I can't wait to start taking it! Liau said lots of those from the original trial are still alive! Yay for looking into my pathology. Yay for having targeted treatment. I am so lucky!!

We're currently waiting for Dr Cloughsey. I can't wait to meet him and talk to him at depth about my genetics/pathology, and what things could work as backup plans in the future if Hermie crawls out of hibernation. (Of course, I'm also really excited to talk more about the Accutane trial results and details.)

Danny and I can not believe the good news, especially since I woke up with my right eye dropping, eek! I hate it when that happens. It makes me feel like my face is melting.

What a relief. I can't even absorb the good news! I'll be pinching myself the rest of the day. Tonight will be a delicious meal with a full bodied red wine, then I'm back to the protocol. Gotta celebrate :) 

Good God I am such a lucky girl!!!! Wow.

Wow.



Double wow.



Phew.

27 comments:

  1. So very happy for you, Dan & all of the people that love you so very much!!!! yes!!!!!
    L.

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  2. so happy for you!

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  3. SO SO HAPPY to hear this!!! YAY!!!

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  4. Such great news! So happy for you, and your family!

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  5. Hurray hurray!!!!! Blessings and prayers always for you!!!

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  6. So happy to hear this news! Crying happy tears... and oh. my. god. YES!!!!! Sending love and hugs from Costa Rica!!!!
    -Sarah Joy

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  7. Congratulations Jessica, that is fabulous news!!!!
    Hugs, Megan Robinson-Hoyt and family.

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  8. JESS!!! What fantastic news!! Absolutely thrilled for you, your family and friends. xoxoxo

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  9. Best news ever! Wish I could give you all a great big hug!! Enjoy this amazing time!! You are incredible!!

    Maleka

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  10. That's the best news I have heard in a very very long time!!!!

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  11. Yes, what AMAZING news!!!!!!!I am so happy for you. :)

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  12. Love this! Love you!!

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  13. Thank you God for the blessing of health, I pray continued blessing for Jessica, and that you would show her the right path to follow. May her cup runneth over with love and joy!!!

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  14. Whoop whoop whoop - this is brilliant news Jess I'm thrilled for you. Your good news has really made my day. I'll celebrate for you by having a cupcake later. Well done you.
    Xxo

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  15. Awesome news Jess! I love it when people get what they deserve and you deserve to live Hermie's free. So happy for you. Hugs- Liz McCown

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  16. Yeah. So glad that you got good results. Been praying for you. I got good results as well. We need to celebrate together! Too bad we live so far apart. I'd love to hear about the accutane, since I have that mutation as well. Take care and keep up the good work.

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  17. This is such wonderful and amazing news! I'm so happy for you, for your family... YAY! 1,000 hugs for you.

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  18. Dancing the happy dance. May your windshield have many more butterfly splats in the future!

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  19. Hooray!!!!!!!!!!! Sending lots of love to you and Danny! xoxo
    Candyce

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  20. HOLY COW!!!! Woooooooooooooooooooooooohoooooooooooooo!

    BEST. NEWS. EVAHHHHHHHHHHHH! We love you big Jess!!! YAY! I can't even handle the joy I feel!!!

    Big love to the moon and back from NYC,


    J, S and O

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  21. What wonderful, great news for you and your family!! I am so happy for you. continued prayers and xoxo, Kathy Luthringer

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  22. Just read your amazing news!! Yay!!!! What an incredible blessing! I can't even imagine how you must be feeling. I am so happy for you Jessica!

    Sending lots of love,

    Alana

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