Thursday, January 10, 2013

Scan #2 - N.E.D.

I'm not quite sure what is worse... the week leading up to scans or the waiting period in between when it is done and you wait for results.  I wouldn't wish this stress on anyone.

Denny and Kayla left for St. Jude Tuesday morning.  They had a rain delay in Dallas, but made it there safely late Tuesday night.  As far as appointments go, it was a pretty light load this time which was good.  In Psychology (yes, we completed that dreaded 2nd day of 3 hours of testing) Kayla scored off the charts in most categories.  The day ended early at 12:00 leaving them a few hours to go play over at the Target House.  It's always fun to see all of the familiar places and faces that we considered home and family for so many months.  Of course, it is nice to hop on that shuttle and leave after too.

Finally getting a bite to eat in the airport

Playing Piano in the Amy Grant Room

A much needed hug from the beautiful Michaela

Today started bright and early.  We had told Kayla that there would be no IV this time around and so she was so very happy!  To our dismay, there indeed was an IV needed. Not because of the Lumbar Puncture, but because today was a Contrast MRI.  Oops.  Just when Denny had Kayla convinced that there was no turning back at this point, the darn IV would not hit the vein.  Luckily the nurse called in an expert when she saw Kayla's arm covered in blood and noticed her shaking so badly.  The next nurse was a serious pro with a sweet disposition who quickly got the IV started.  Kayla said, "Dad, I don't think I will be able to lie still for my MRI because I am shaking so badly. But I will really try".  If that doesn't break your heart.... The sweet nurse went and got a few warm blankets to put around Kayla's little body to warm her up. It worked!

In Physical Therapy, Lauren was very impressed with how amazing Kayla continues to do. She even said she thinks she is ready for soccer.  I am still very leery about balls flying at her head! Kayla's visit with her Endocrine doctor.  As I expected, her TSH level was even more elevated then last time.  We will be adding a thyroid stimulating medication to her daily Zofran to help. This is a very common occurrence after the treatments she has received.  It's not a huge deal, but it is forever. Just one more thing to remember, right? 

Kayla and Denny will land at 11:30pm tonight.  I can't wait to have us all home together again.  We will be able to breathe... at least for another 3 months.  That's right, today Kayla's MRI resulted in NED once again. (No evidence of disease)  Thank you God!!!! Denny said he had more details for me later, but for now they are literally running to catch the shuttle to the airport.

Thank you to all of you who have had those candles burning and prayers going up. We feel it all and I know it is working. Please don't ever stop.  There is no end to this story.  There is no magical number of years where this all ends.  Cancer is a beast. 
                                                                          We NEGU


  1. CONGRATS on this wonderful news! I don't know your family personally, but I often hope for the best for Kayla. NEGU! :-)

  2. Annie I am so thrilled for Kayla and your family! What a wonderful way to start 2013. We will always send positive thoughts your way!

    Erin McGinnis

  3. Praise God!!!! What wonderful news!!!! I'm still always so excited to see photos of Kayla eating - lol! I bet she's excited about the thought of soccer someday soon! Hugs to you all and YAYYYYYY!!!!!!

  4. Wonderful to hear that happy news! Still thinking of you all the time! Kayla looks so beautiful and healthy! We miss seeing you regularly! God bless your family! XO. Ari

  5. Way to go Kayla! Stay strong, Barbara

  6. Hi-

    I am a mama of three in Novato and have been following Kayla's story from the start....lots and lots of prayers for the entire family!!! Just wanted to let you know that I am a clinical social worker with a background in Children and Families (and medical issues). In addition, I went through my own terrifying experience with my twin girls. I would LOVE to talk to you and get you comfortable with me and then offer you and your husband a night out alone. My husband has volunteered to watch our three under four. I think re-connecting and having some alone time with your partner can truly rejuvenate and reinvigorate things and I would be honored to help, and 415-272-8705. Love and blessings!