Tuesday, July 3, 2012

Scan Update

Unfortunately Kayla lost more weight. Fortunately, it will not slow down our plans of getting her home!

Kayla's Spine MRI and LP are both CLEAR! NED. Hooray!!! Even with the weight loss, they are confident getting her home will only help increase her "normal" appetite. Dr. Gajjar asked, "So, when do you want to leave?" Gosh, those are beautiful words. Tomorrow, the hospital is closed (except for the med room which we will not be visiting) so nothing will happen. Thursday, there will be a final assessment with OT and then Kayla's line will finally be pulled. She will be swimming in about 2 weeks! We can't wait!!! Just wanted to pass on this fantastic news and thank you all again for your constant love, support and prayers. You have all kept us lifted and made us remember that No One Fights Alone.

We will be scheduled to return to St. Jude in 3 months for a repeat of these scans. I pray for patience as I try and deal with the upcoming scanxiety I will for sure experience before each and every visit back here. I pray for a protective shield to keep all negative waves away from me and to somehow keep my filter as I deal with returning to the real world and leaving the bubble of St Jude and the friends I now consider family.  For those of you who always have found a way to know just what to say and how to be a constant emotional support to us, we can't wait to thank you in person! It truly is an invaluable gift.

22 comments:

  1. Yahoo! This is blessed news. There's no better bubble than your own home, family and friends. Be gentle with yourself. Meow Meow will encourage your beautiful warrior to eat. That photo of Kayla with the nose and glasses is one of the cutest and funniest pictures I've ever seen. Tell her I printed it out so I can look at it all the time. Love to all of you most amazing people. Love, Mary and Frank Hoburg

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  2. Hooray! Congratulations! Enjoy this wonderful news! The fireworks are for Kayla tomorrow! xo Allie

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  3. Hooray! The 4th of July will have a new meaning. Enjoy the fireworks!
    Claudia B.

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  4. Congratulations Kayla! We are so happy for you!

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  5. So, so glad to hear this news. FANTASTIC! We have been following every posting. I'll be back in CA soon and hope to visit the Carr girls and to see Kayla, AJ, you and Denny. Cokie

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  6. Congratulations! So happy you'll all be home together soon.

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  7. The big celebration on July 4th in Novato will be for Kayla and all of her family and friends on hearing the wonderful news about your homecoming!

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  8. Wonderful news!!!! Praying her scans are clear from now on!
    Love and big hugs,
    Lisa Byrne

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  9. Independence Day! Flags flying! Fireworks! We all celebrate this wonderful news - going home with the best med reports...all clear! Yes, yes...being home will help with eating/weight gain and in every way possible. Hooray! xxoo love, hugs, Auntie Ann

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  10. Congrats!!!! The power of prayer is amazing.....

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  11. You deserve the fireworks for the return home! Blessings to you. We will think of you tomorrow as Novato celebrates families at the parade. Love, the Gouldys

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  12. Truly happy news! We pray that everything will go fine and you guys will be home soon. I know that you will be :)
    A big kiss for Kayla and a squeezing hug for you Annie;)
    Love from laila and Sepeatom

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  13. Congratulations!!! So very excited for you all! Happy Independence Day! Looking forward to seeing you :-)
    - Erin S.

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  14. Best news yet. So happy and thankful that the good Lord listened to everyone's prayers and sent his healing straight to Kayla. Congrats on the great news and pray they continue that way from now on. Love you all. Cindy Jacque

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  15. I have been following your blog faithfully and while I haven't commented, my family and I have prayed for you guys and for Kayla through this whole season. I look forward to seeing you in town and around school next year! We share your joy as you prepare to return home. I will continue to pray for you that you would be protected from scanxiety and able to enjoy being home and the routine of normal life.
    Love, Alice Hoffman

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  16. That is GREAT news!! All clear!! We will continue to pray that you will hear "all clear" every single time you go back! I am so glad you guys will be home soon! You did it Kayla!! You stayed strong! Betty Criesco

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  17. Whoo hoo! So glad that you all will be back home so soon and that all is clear for dear Kayla!! Be kind to yourself and don't do anything that you don't feel like doing, just because you feel like you should. You have been so strong and truly inspirational to all! Ava will be so excited to know that Kayla is coming home. She has been asking about it every day. Our prayers will continue, as always, for the strength to face the future scans. Love to you all!! XOXO

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  18. Tears of joy from hearing your wonderful news. I can not imagine how excited you all must feel to be coming home and to hear that awesome NED news.

    ~Kelly B

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  19. That is music to my ears, scans are clear! So happy for you Kayla! You Did It Kayla! Just keep up your strength up and gain that weight! You'll be home soon! You are always in my thoughts and prayers! Warrior Princess You Rock! Now a little matter of a Happy Dance! ;)
    Love, Erin Melrath

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  20. Such a wonderful update, we are beyond thrilled for all of you, have safe trip home!!! Byers Family

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  21. I have followed your blog from the start. You are truly amazing. I am so glad Kayla's results so far have been positive, I will pray they stay that way. Have a safe trip home & enjoy being back in your own environment.

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  22. Dear Annie, Denny, Kayla & AJ

    This is just the best news ever!!! I knew it would come but I know until you hear those magic words from the St. Jude team, it's still hard to believe. Robert and I are just thrilled for all of you and the next time we are in Novato, I will certainly check in with you my Dear Annie. We will continue to send our prayers and positive thoughts that all of Kayla's future scans and tests will continue to be NEGATIVE!!! Now, just ENJOY every single moment and getting back into that normal routine that you probably at times thought was so boring but will now cherish I'm sure!

    Much Love - Cindi & Robert J.

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