Thursday, June 28, 2012

We can see the light at the end of the tunnel

Well, it's official. We are back in E Clinic! Kayla's ANC went from almost 9,000 yesterday to about 16,000 today! GO Kayla GO!

Playing catch with new friends... Ahhhh! E Clinic!

 This is Kayla's "I can SEE the light" pose. HAHA
 Sweet, Silly, Beautiful girl!!!! I love this face.

It was such an exciting moment when our team walked through the door! We weren't expecting Dr. Gajjar until tomorrow, but he surprised us too. There is just something about being back there that makes us feel so reassured.  Dr. Gajjar told us that Kayla's Brain MRI is clear. NED. CLEAR! We will never ever ever take an MRI lite ever again.  We were really hoping to get Kayla off of TPN today or tomorrow but that is not going to happen. Despite her efforts to eat, they want to see this continue through the weekend. We will discuss ending it again on Monday.  Since cutting out the lipids 6 days ago, cutting back the calories, and even with pharmacy forgetting to send TPN one night, Kayla still managed to put on 2 ounces. This is a great thing in the eyes of the docs. We just need to keep this up and we are sure it will be a thing of the past soon.  Right now she is getting 60% of her nutrition through TPN. 50% is the minimum and then you wouldn't even need it, so you can see how close she actually is! When I heard 60%, my heart dropped imagining we had so far to go... but 10% is nothing!

Tomorrow Kayla will have another MRI of her spine to make sure everything there is still clear.  Later on in the day, she will have her Lumbar Puncture. So, if all is clear and she can keep her weight up over this weekend, that line should be out early next week! We can't wait!!!!!! Tomorrow is a big day. Not to mention, how do you put on weight if you are NPO (no food because of the upcoming sedation) ALL day? We are hoping something earlier will open up for Kayla.  We also heard Dr. Gajjar mutter that he is hoping to have us home by next Friday! So, we are booking tickets for Anthony and I to head back asap. The car is on order to be picked up any day now (within a week). St. Jude will pull their strings to get our "two" home. Can't wait to all be home again. And just in time to enjoy summer and relax a bit before school starts. 

Tonight I noticed that Kayla was having a really hard time eating again. Tears welled up in her eyes and silently trickled down her cheeks. I knelt down to her level and she told me that she can't take being away from meow-meow any longer. That he needs her and she needs him! It was the sweetest thing. So our new strategy is that every time we see her struggling with food, we will meow. So when I saw her spoon lingering for too long, I would just send a little "meow" her way. She would giggle and immediately take another bite. Albeit small, but still something! Haha. I will find motivation however I can!!!

Now. Here is something that cracked us up! Ok, we haven't been to E since the very end of January. One of the popular "prizes" that are handed out here at St. Jude are stickers. On one special visit, we were given stickers of the Beebs (Justin Bieber).  To make Kayla laugh, we put these stickers on the three boxes of latex gloves in one of the exam rooms. Today, we ended up in that room. Two of the three stickers remained. Guess we know which size is used most often here. I wonder how long through our round of future check ups those stickers will remain. I will have to keep tabs on Exam Room #2 while the tweens hope that that hair cut is surely a thing of the past.

Soon we were on our way back to the apartment in great spirits. We could finally truly see the light at the end of the tunnel. We still have a big day tomorrow, and we are hopeful the news is just as positive as today.  For now, we DANCE.


  1. Almost home! Hang in there just a little longer.

  2. Kayla's looking so SPUNKY! :D

  3. Pretty soon you'll be passing through the rainbow tunnel....HOME! that is so great! So glad Kayla is finding motivation to eat! I need to try that in reverse!! maybe I will have my kids oink every time I want to take a bite... :-) Have safe travels home!

    D~A~N~C~E !!!!!!!!!!!!

    Your Neena!

  5. Yeah! What a beautiful smile!

  6. I love it, absolutely love it!!!

  7. Love it, this is AMAZING news!!! I just know the news tomorrow will be equally great!!
    Kayla, we cannot wait for you to be home with your sweet kitty!!
    Liz N

  8. Awesome!!! So happy to hear this wonderful news & to Kayla with her big beautiful smile :) Would love to see you all upon your return....

    The Chabans

  9. This news and these photos make our hearts dance. Meow Meow must be so excited and so proud to be part of your wonderful family. What a great reunion that will be. Thank you for lighting our night. Love, Mary and Frank Hoburg

  10. That is GREAT news!! Next Friday!! I'm sure Meow Meow will be just as excited! Betty Criesco

  11. Clear scan!!!! Woohoo!! So glad to hear all the positive news. Things are looking up up up! xo Allie

  12. I got chills, they're multiplying ..........haha OMG YAY! The Dehnert's are coming home! So had to hear everything is clear and now all Kayla needs to hear is home and her body will start salivating at the thought! ....I got an idea maybe tape all these print outs of home, friends, meow meow and stick them on the fridge as a reminder of the biggest incentive to take just one more bit, with snacks ready to go as she feels the incentive come on. You made my day, I'm off to discovery kingdom with a smile and hope that we'll all be reunited soon and things will become more homey and normal for you all!

  13. Wow! Next Friday! Great great news. Meow meow will be counting the days! I love seeing Kayla dance, it brings a smile to my and many of our faces for the whole day! We are so excited for you guys to come home. I am crying tears of joy in Starbucks right now!

  14. What AWESOME news! Can't wait for Kayla and your whole family to be home again! Way To Go Kayla! Keep dancing!

    Love, Erin Melrath

  15. Annie, Such wonderful, heartwarming news!!! Praying for the green light and a swift, safe journey home! Kayla, You ROCK!!
    love, Jane SIme

  16. Dear Annie, Denny, Kayla & Anthony,

    I "ditto" everything everyone else has already said. I had no doubt this day would come and it's almost here! You and your family's love, bravery, commitment to each other is AMAZING and hopefully those ingredients has made this "life changing" journey a little bit more bearable. Robert and I are so very happy for you and your family, especially Kayla, and you will be returning to your loving family members, friends, and loving resilient community in no time! Hooray!!!
    You are truly so lucky to have such a BRILLIANT daughter!!!

    Love Cindi & Robert J.

  17. WooooHooo! What great news and soon.... Up, up and AWAAAY!!!
    Love the story of "meow" encouragement for eating! You are so creative, Annie....but we know that! Love and hugs from PA, Auntie Ann

  18. SO much good news all in ONE entry!!!! It really is a day to dance. Go Kayla Go!!! Every little thing is an opportunity to celebrate: bites, NED scans, good news,...!! I can't wait till you guys are released back home and 'normal' (well, as it can ever get again) summer returns to your lives...and Meow!!! I pray as you prepare to go home, practically and in heart, that God would be shoring you up in every way. He has been soooo good in providing what you need!!!

    lots of dancing for kayla tonight!
    stacy graupmann, chico

  19. So happy to hear!! You are all truly inspirational. Happy you will all be home soon!

    Love, the Goodwins

  20. Rejoicing for & believing that you will all be home next week. Praying that your sweet girl will be able to take in enough calories to continue to gain weight I was thinking of you yesterday afternoon when I checked the weather in Illinois, then Tennessee. I't so hot in both places, and on our patio it was beautiful with a wonderful refreshing breeze and about 75! I was praying that you and your family could experience that. When I left the hospital in 2004 after my second neck surgery, when John pushed me through the front door of MGH, A cook breeze swept over my face and I cried for the gift that God had given me....going home! That's what I pray for Kayla, you, Denny & AJ, that same refreshing breeze and the knowledge that you're on your way home..more than a place, but really a feeling, the people, and Meow-Meow!! Love you all...