Wednesday, December 7, 2011

A Day Late!

Ok, Starting over! I had this whole long blog update done and my wifi went down just before I could add the pics of course.  The worst part about it, is that the whole post was deleted! Grrr. Today is a new day. It's up and running now! And I have more of an update. haha.
View from the shuttle ride into St. Jude's Hospital

Last Night's Blog Post (better late then never):
What a long day for our little warrior. Today we woke up bright and early to snow as I earlier posted. It was such a cool surprise for our first day here. We headed out on our shuttle all bundled up and ready to see what wonders our day would bring. Even though the snow didn't stick for long, it was so pretty while it lasted. What a great first day!



We started the day (as we will every single day here) by going to registration and getting Kayla suited up w/a blue id bracelet. It has her full name, patient ID number, and the date.   She had her vitals checked as well (which she will also have checked each day).   At 9:00 we had a New Patient Visit appointment, Hx and Screening. We got to meet Kayla's Oncology nurse. Her name is Elizabeth. What a WONDERFUL woman. Warm. Kind. Funny & just what we have been needing in this process. We spent almost two hours talking about everything. How this place turns sad and scary situations into conversations filled with positivity, love, genuine hope and laughter is truly amazing! She went over exactly what to expect for tomorrows sedated MRI and Lumbar Puncture (LP).

*Right now we are asking for prayers that after getting the results from the LP, she will still NOT have any cancer cells in her spinal fluid keeping her in a "low-risk" category. If she is in a high risk category, she will require much more radiation to a bigger area which could result in possible permanent hair loss in the top back side of her head. All though her over all health and wellness is the ultimate goal, it would be nice to have as little of the physical reminders as possible when this journey is over.

Next Kayla had a child life visit and we got to practice doing a blood draw on a doll with a bald head named "Jake". Kayla got to practice using a butterfly to see which she would prefer for the morning. Here are some pictures of the hallways and of Kayla practicing the blood draw:











At about 6:00 we went down stairs to the lobby where Domino's Pizza had hosted dinner for all of the families staying in the Grizzly House. To our surprise, Santa was there too! He took his time going around to each child multiple times. The kids were handed sheets of paper where they could make a list for him. Kayla's never asked Santa for more! Too funny.



The kids got to go into a secret room divided by two big black curtains and do some shopping for mom and dad. The volunteers wrapped the presents for each child and the kids put our names on them. SO sweet!

Here are a few more pictures that we took while we walked to the gift shop.





6 comments:

  1. I am glad to see and hear that St. Jude's is such a wonderful place with great people. Thank you so much for sharing even with the wifi hurdle. We are sending you a ton of prayers, positive thought and energy and also are praying for Kayla to be in the low risk category. Kayla's list to Santa is very cute especially that she put soda on there. She has been an amazing girl this year and Santa should be giving her everything on that list even the soda. We miss you guys, hugs and love to you Dehnerts!

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  2. This place looks like HEAVEN! And the way they get Kayla used to everything hands on is so compassionate. My jaws opened wide when I saw all the beautiful colors on the walls, and even the Santa House to boot! We are so blessed to have her be accepted there Annie & Denny.....praying for low risk category and can't wait to hear further news.

    And Kayla's list! She's such a sweetie. Give her a soda already, and don't wait til Christmas! lol

    Love,
    Mom

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  3. Your love shines so beautifully brightly. Thank yo for taking us inside your hearts and this most amazing and healing place. Constant prayers and gratitude, Mary and Frank Hoburg

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  4. AMAZING AWESOME TOTALLY PERFECT place for Kayla to get the best care. Positive setting in every way.... the environment is great, and the fact that they including her in her care process is fabulous. Plus they are ensuring the real world of Xmas doesn't get left behind!
    So G_R_E_A_T
    Thanks for all the pix & journaling to share w/us and keep us updated

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  5. I'm so impressed with St. Jude's! Love that they have Kayla practice the blood draw - must make it less scary for her. What an awesome party with Santa for the kids! Glad that there are these fun things for you all to do there.

    Thinking of you all every day!

    xoxo Allie, Jeff and Evan

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  6. I can't get over how beautiful and radiant this place is ! It shines full of hope and promise and love and I am so glad that you guys are there to fully embrace it all. :) The Santa, the shopping for gifts, the Jake doll, it makes it all special in a child's eyes, even though the "special" and "happy" seems to slip in and out since we all got this news. I am so glad that this place is now your home for a while. It suits you! LOVE YOU INFINITY AND BEYOND!

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