Thursday, December 22, 2011

December 22nd

Today started out so much better. Kayla was in better spirits. She woke up and was in a decent mood even. I think being able to get in our own car and have a comfortable ride down to the hospital helps so much. It was pouring rain this morning. We drove carefully and arrived safely. 

Our first appointment was with the St. Jude School! We got to meet with the directer and find out all about how school works here. What a cute school. I would have taken pictures, but there were kids in there and as we know, that's a no-no. Maybe as time goes on, I will find the right moment to snap a few quick shots. Kayla went on and on about how much she likes school. She was very sad when she learned that when she goes back to her regular school, she will be in 3rd grade. We are happy that she won't be behind, but Kayla was sad that she won't be in Mrs. Boerio's class room next year. I think she hadn't realized that until now. Kayla will go to school for at least 3 hours per week. They feel that because it is one on one, she should be able to get in all of the curriculum to keep her up to speed. Obviously that means a LOT of homework which is great. Bring it on! What's kind of neat is that if she is inpatient (like when she is staying in the hospital for the weeks she will be getting Chemo) the teachers come to her. I think that will help a lot (and give her a good distraction from the Chemo). I got an email with some friends of Kayla's wearing the CKR t-shirts. Kayla was excited to show them off today. Everyone here is so happy about all of the support we are getting from home. It makes life here tolerable!  Here are a few of Kayla's friends from home showing their love!
Alex Goodin (Mrs. Boerio's class), Matt Goodin (Mrs. Kilgariff's Kindergarten class) and Nick Goodin (Mrs. Stutzman's 2nd grade class) at Lu Sutton. 
After school it was time for sedation and radiation. This was the earliest one yet. I could already tell that because her spirits were so high, she would do much better today. I did give her Motrin 2 hrs. before as well. Kayla picked out a scooby doo movie to watch and it was time for night night. This is another one of her AWESOME nurses here.

We crossed our fingers for her demeanor to continue and kissed her on her forehead as she drifted off to sleep. Good night sweet baby girl.

It's amazing to see how the kids react to things here. There I was out in the waiting room with Denny and we were watching all of the families waiting around for their radiation appointments. The kids busy themselves in the child life play room doing art projects or playing games (today was hungry hungry hippo). Some kids play video games at the multiple stations. There was this one boy who brought me to tears today. When the tech came out to let him know that it was his turn, the boy went running up to him to give him a high five and a hug. He was so excited to go back. I sat there and watched and just said, "huh!! Wow... that is amazing!" You usually get the same nurses, techs and anesthesiologists each time you go in, so you do really start to build relationships. This boy has clearly been here for a while and his love for this tech was felt from across the room.  As this boy walked happily with the tech, there was no fear in his eyes. He was happy as a clam. You would have thought they were about to go on a ride at Disneyland together!  Sometimes ignorance is bliss.

We got a call from the E clinic that the results were back from her stool test. They were positive for a bacterial infection. They weren't sure if she would need to be put into isolation or not as to not risk infection spreading to those kids who wear the masks due to having no immune system. Her symptoms were still there, but were SO much better. We were hoping that we could avoid being isolated. We would bring Kayla in at the end of the day for a check up. 

When Kayla woke up, she was not crying! She was in good hands too which really helped. We had a new nurse who we hadn't had yet there as she woke up. She told us that while Kayla was asleep, she gave her a neck and shoulder massage to try and loosen the knots before she woke up. So, not sure if it was that or the Motrin, but she was doing great! We sat her up ever so slowly. Off to the cafeteria we went for some lunch! Kayla wanted grilled cheese again. Yesterday, we got an appetite stimulant from the E clinic to try when she woke up. We crushed it up and put it in some apple sauce. So far, it seems to be helping. She has eaten more today then she has in a long time! She ate the entire half of her grilled cheese plus the corner off of the second piece. She ate all of her apple sauce, and about a half of a small bag of sun chips. We were SO thrilled!

Unfortunately we missed our PT appointment because radiation was running a little behind. We needed to feed her so it just had to be missed. We headed over to the E-clinic to see what the scoop on her poop was. They said that we would need to start her on an antibiotic every 6 hours for the next 10 days. The real sad thing is that one of the possible side effects is diarrhea. Guess what she has? Poor girl! It's so sad. I feel so bad because she is raw and in pain. Thank goodness for Aquaphor. That stuff really is a miracle ointment. It's going to be a long night. I am glad that it's not a side effect from the radiation though. Dealing with this for the duration would be horrible!  She is experiencing some redness inside of her ears as well. We got some drops for her ears which she will get twice a day for 5 days.

Last, we had an appointment in pain management therapy. They had a lot of techniques that they are going to be working on with Kayla to help her cope with all the pain. It was pretty awesome. We all agree that Kayla needs a LOT of practice before she will be able to use these skills. They think of everything here! I just hope she gets some sleep tonight. Thank God tomorrow is Friday! No Radiation Sat/Sun or Monday due to the holiday. I think we will do a drive Christmas eve to see the lights still and drive by Graceland too! We have been told it's all lit up right now and quite pretty. I will take pics! I can't wait to see it. 

Tomorrow morning we head in early for a non-sedated MRI (should be interesting...) followed by sedation and radiation. I believe we just get checked out by the docs and we are good through the weekend. That is unless we need them of course.

Friday can't come soon enough!


  1. Check out starry nights for Christmas lights east on poplar to highland left on highland right on walnut grove to Shelby farms

  2. There will be many bumps along the road to recovery for this is a challenging one. Whatever rocky waters you encounter through the ride you can and will overcome. The silver lining on the sunset ahead is too beautiful to describe with words. Even when the days are long and you feel defeated just remember to close your eyes and breathe. Hug long and hard even when you don't need a hug. Hold each other's hands for strength even when you are feeling strong. Prayers and deep unconditional love will keep our Kayla strong enough to endure all the trials ahead of her. Her parents and friends will keep her spirit and fire alive. This hardship makes every moment of our life a blessing and the time we spend together extraordinary. I love you guys so much.

  3. I love that she is able to get in school, too :) !! The one on one time will be amazing. You can accomplish SO much, even in one hour. When I used to tutor kids, all I got was one hour a week and even that made a difference!! If she needs any extra help when she gets back with school stuff, you KNOW I am ready and on board! I was so happy to read about that exuberant boy who high fived his guy!! That 's incredible! Kids are resilient and I am sure this little boy figured out that this man helps him feel better, so that means he gets excited every time he sees him. :) I love you all so very much and miss you terribly!!! Hugs, Laugh and Light! Auntie Nikki

  4. Just got all caught up on your posts. Looks like you all are hanging in there as well as to be expected! You guys are doing an amazing job. Kayla is too. Wish I could give you all a great big hug! I was talking to one of my clients the other day and I was telling her about Kayla and she said to me that she had just made a 2,000 dollar donation to St. Jude! How ironic was that??? She was looking for a charity to donate to and a St. Jude commerical came on the TV. Guess all those cute kiddos got to her! We got a kick out of that! I love you guys! You are ALWAYS on my mind. TGIF!

  5. Annie, I pray for Kayla every morning. I think about you and your family a lot. Work has been so busy, as you know this time of year is, that I havent been able to keep up on all your blogs. Well I am not working today so I sat down and caught up on everything. It makes me cry a lot but it is also so inspiring. It is so impressive how you keep it all posted.Kayla is just the cutest girl!!! Last year at this time, we were in the rain on a boat! With no worries! This year I dont have Steve and Kayla is sick. It sure changes life's priorities. I know you will all pull through and Christmas 2012 will be perfect!!! Merry Christmas! My prayers and love are with you all