Monday, December 19, 2011

Slow changes

December 19, 2011

Today was a very special Day at St. Jude. They honored a man, Joe Farris (also knows as "the original Santa" here) had his 100th visit today! The press came out and the hospital and city nominated today, December 19th, an official Joe Farris day in Memphis from this day forward. They gave him a plaque. It was SO sweet! They did a video for him too. It was great to be here for such a great moment for the hospital. I cried when he told the story about some of the patients he has encountered, the power of prayer and the courage to keep begging for money (just like his friend Danny Thomas had done). He has been here since the beginning of the hospital. He comes twice a year bringing donations every time he comes. Such an inspiration. It was hard to get good pics through the heads of the media... but you can see it from my view :) It was on the local news here. If I can link it later I will (It still hasn't reached online... I know, I'm FAST)

We had an ok Monday. It started early. It has been SO hard having to catch these shuttles so early to make sure we make our appointments on time. I had an early Christmas present given to me today. One of our very good family friends donated us a car from Enterprise Rental today to use for the next few weeks that we are here before the break! It is like heaven!!!!! Now we can make Christmas happen somewhat here in Memphis. It goes beyond presents. It's about what we can do for an entire Christmas Eve and Christmas day where all hospital things shut down and everyone is with their families. I am thinking we will still do our Christmas eve drive to see the lights. SCORE! Then on Christmas day we can go see a movie. There isn't too much that will be open that day. I am hoping a bowling alley. We are researching places to possibly go have dinner. Something special. Something that gets us out.  The car gives us wings! Never have I been SO happy to be behind a wheel. Ok, well not since I was 16! It's like a big silver ANGEL!!!!!!!!!!!!!! THANK YOU! You have endless hair credit as you can imagine ;) (and I hope SO much more) I just hope I can find a way to pay you all back one day.

I got back to the hospital just as Kayla rolled out of recovery. She was in her usual pain. Unfortunately the motrin didn't help. We tried. Kayla was determined to see Miss Amy. She is the gate keeper, per se, to being able to do radiation without sedation. We all needed to see how close (or how far) we are to that goal.

Amy met us in the radiation waiting are and showed us a lot of pictures of the room. She explained what cells are to Kayla. She explained how tumors form and what this radiation business is all about. I still say that we, as adults, should ALL have it explained to us in kid terms. Not only is it not as scary, but it's so much easier to understand. I love Child Life.

Amy decided that the best step now because of Kayla's neck pain is to have her try out the position in the room and see if it would even be tolerable. So, we all agreed that would be best. Besides that, we need to know exactly what position her neck is in in able to do more PT with her here to get her ready. So we walked back. We got to see the special mask that was made that shapes her face. This is where her face gently rests during radiation. I was allowed to take a few pictures.
She will be allowed to keep this mask when we leave on our break. Not sure what we will do with it. A shadow box seems a little strange to me.

Here is Kayla feeling how soft it is on her face and how she can breathe easily through it

This part was easy enough. Next, we walked back to the room where the treatment takes place. Tomorrow, one of us will get to watch (not in the room) while it is in progress. The next day the other will watch. One at a time. It will be good to see how careful they are while moving our baby around. I know hard... but knowledge is power, right?

So, back to my story. We walked back into the room where the action takes place:
 This is the big table. The main station!
 They quickly got it set up so we could "try" the position to see how Kayla would feel in position
 Getting her face cradle in place and ready
The nurse was explaining how kayla will lay. You can see here that she was hesitant. I think it was especially hard because her neck was still so sore. I was not allowed to take any pics once she was in position. I can understand why. We got a good look at how her neck is. NO WONDER she is in pain. She is tilted back into an odd position (head tilted back) the whole time. It is for her airways. It's hard on someone who hasn't had neck surgery let alone almost impossible for her right now. We will keep working on her massage... but it could be a whole two weeks before she is not NPO.  It was good to see though. I think Kayla understands the progress she needs to make. 

Denny and I are both cleared now for dressing changes. We got the entire kit. That is almost the same as a drivers license. You can imagine the excitement! The nurse was hysterical. She loved how quickly we caught on. I took it from her enthusiasm it doesn't usually happen that quickly.

Tonight we have noticed more changes. Her hair is starting to shed. The skin above her left eye is red as if it has been rubbed raw. I put some Aquaphor on it and some drops in her eye. It helped.... although it was emotional getting it in.  These changes are hard to watch but make us even more thankful for the good parts of every day. We have a very full day tomorrow so good night all!


  1. good job kayla have a great night sleep!!

  2. Wow. Sounds like a lot to take in. Glad you got a car to use. Its so rough being without one when you are used to having one. Also so happy you guys are still so involved, not burned out at all. And that you are also able to see the positive side in all of this yet. I swear, once you are put to God's test and having to face the worst, you adjust to it all in time, and just appreciate life more. Hang in there and keep staying to positive and strong!! Love , Krysta.. btw we have a card Ash made, but it might take a awhile to get it out into the mail.

  3. Wonderful about the car! That will really open up your world down there! You guys are doing a wonderful job. It is so hard to see your baby go through such unimaginable challenged but you're doing everything you should to be the fantastic parents that you are! xoxo Meghan

  4. That's exciting about the light driving on Xmas eve! Geoff and I are taking AJ light viewing tomorrow night, too :) and have other special things planned for him for his overnight stay at our house. It's a blessing to be able to spend this quality time with him! I am sending something for you all hopefully tomorrow. Today the post office was packed! Love you all so very much!!!

  5. Thank you to the good family friend for getting them the Rental Car. How generous!!!! Let freedom ring for Denny, Annie & Kayla! They continue to be so blessed with the huge support from everyone, especially YOU, whoever you are!

    Kayla, you're such a brave little girl right now. Eventually, you'll be able to do this without the sleepytime medicine, and it will get easier. I'm so proud of you. it is also very good for you to understand what is happening while they're doing all this important stuff to you to keep you healthy. Thank you Amy!

    Good night, sleep tight & have a good tomorrow. I love you!


  6. Thinking of you always...STAY STRONG KAYLA <3

  7. So glad that you are getting some little freedoms, with the car and the "license" for dressings. So sorry that miss Kayla is so uncomfortable!! Stay strong little girlie! I am sure that everyone following your journey would say that the best way you could repay them is to focus on getting your little darling cured, and you are doing just that!! xxoo

  8. We think of you guys everyday Annie. Stay strong.

  9. Hi Annie -
    So glad to hear that you have a car for a few weeks! I once worked in Memphis and, now that you have a car, would highly recommend a trip to the Peabody Hotel to see the Peabody Ducks ( The kids will have a lot of fun seeing them :) If you are looking for a great rib joint check out Rendezvous ( For a taste of the South, try the Fried Pickles at BB Kings Restaurant.

    Stay Strong, Kayla!

    All my best,