Wednesday, December 14, 2011

Surrendering to Radiation

Good Evening everyone. Happy Wednesday to you all!  I am sitting here decompressing and trying to wrap my head around all that happened today. Over all, it wasn't even close to the busiest day we have had... but by far it was the most emotional. The morning started out with listening to Kayla (rightfully so) complain about being hungry.  Also, Donna started packing to go back home. Her time here has been amazing and so needed! We can never thank her enough for all she has done and continues to do for us. We will all miss Donna! Kayla's tummy rumbled as we waited until her 12:45 appointment for radiation. This NPO business is getting old for all of us. Today was Kayla's 6th sedation.

We arrived at the hospital just in time for one of their big gift give-aways hosted by Target. The line was LONG! Lucky for us, we had Donna here still to stand in line for us. We would have never made it back in time for her appointment. We took the elevator down to the Plaza Level and walked into the radiology department. As always, the staff was friendly and before we knew it, we were being walked into one of the private rooms where they would sedate Kayla. They cleaned her Double Lumen lines and prepared for take off. Mentally, it was just so hard on me. Knowing what was about to happen. I am content in knowing she is having the best protocol offered to this date, but it's hard to think that in who knows how long, all this harmful business may not be necessary. It is so hard to just surrender and know that this is the best option for now. I am learning to surrender a lot.

Donna met us back in the radiology room where we all said "see you soon" to Kayla. We got to see what she was able to grab from the gift give away too. Kayla got a Crayola Glow Station! It looks fun! Then, Denny, Donna & I walked over to the cafeteria to grab some food. We were NPO with Kayla. We try to support her in that way. It's the least we can do! Just as we were finishing our last bites, they called me on my cell phone to say that Kayla was starting to wake up and that it was all over! I couldn't believe how fast!! We walked over to recovery. In true Kayla fashion, she was agitated and complaining of "back of head" pain. She was sipping on sprite and eating oreo cookies. Even though she has never had oreo cookies ever in her life, it makes me happy now just to see her eat. No matter what it is! One more thing I am letting go of... for now!

It never gets easy to watch her when she is in pain mode :(

We got her into a wheel chair and headed over to the cafeteria to grab her a fiber bar. (her request) Donna gave us all hugs and headed off to grab her cab.  She will be dodging a big storm headed to Chicago, so hopefully it won't be too bumpy of a flight! 

The end of our day was near and we had one more important appointment. We had to meet with an endocrine doc.  Everything there went great. He sees zero symptoms that could be related to her cancer. He will follow up with us after chemo is complete in the spring. One thing about this being a research hospital is that they don't leave one factor out! Not only do you meet with every single specialist known to man, but they continue to follow us for her whole life. It's all part of the research. Amazing!  Kayla got a LOT of beads today for her necklace!

Tomorrow will be a very full day. She has an OT consult at 8:30am, a speech consult at 9:00. We have an appointment with a line nurse so she can teach us all about these double lumen lines and how to care for them. 

At 10:30, we head over to radiation and do the whole sedation and radiation treatment over again.

As soon as she has recovered and is awake, probably around 1:45, we head over to Neuro-Oncology for a therapy visit/check up and we are done!

We got back to the room finally at around 5:00pm. Kayla requested mac and cheese for dinner. She shocked me by eating almost a bowl and a half! She is realizing that she needs to really fill her belly before NPO. Tonight, we talked a lot about how if she can hold still she won't have to be NPO to receive radiation. I explained that it is Monday through Friday for about 6-7 weeks. Her eyes got big. She said, "mom, how am I supposed to ever be able strong enough to hold still during that?" I smiled because I actually know that answer now. I told her, "baby... when strength is your only option... you are just strong!" She totally understood. I promised her that she would come to a point where she would know she is ready. When she is really ready, her body will just relax and surrender.


  1. What a wise/brave girl she is, as is her mom. Yay Kayla!!

  2. Kraft Mac N Cheese is the best! Yummmmm.

  3. thank you for being willing to share this journey with us. You help us to remember to give thanks...not because of what Kayla is dealing with, but because of the way you have chosen to work through it.

    One of my favorite sayings is a thousand whispers make a roar. Know that our family prayers will be added to the many others whispered on behalf of your sweet girl and for you both as well.

    You can do this. You will all be strong in the ways you must. You are looking this in the face, and you will kick it to the curb! Stay Strong!!

    Another Novato Mom

  4. I couldn't possibly say it better than "Another Novato Mom" has! Surrender can be incredibly empowering. Gentle hugs!

  5. I have chills reading your post, thinking about what Kayla is having to go through and the A-M-A-Z-I-N-G courage she is showing. Stay Strong Kayla! A thousand whispers indeed! :-)

    Erin S.

  6. Kayla amazes me with everything she is, everything she endures and her bonafide zest to surge through it all. We should all carry her strength with us in our every day trivial things that we "think" we need strength for. I love you all so very much!

  7. oh Kayla I read the blog every day and pray for you everynight i know you are strong and I love you very much love and hugs from Great Gramma Marty GG

  8. This is all so truly amazing. I am following your blog daily so that I can keep the prayers fresh. Much love and support is being shown all over here at home. Your angels are close by where you are, as well. Along with surrender comes trust. You are in my thoughts. Love, Cathy Carle

  9. what a lucky girl to have you and Denny as her parents. your strength and wisdom, knowing what to say and when to say it, are so vital to this process. We think of you all the time. xo Amy Weiss

  10. Poor Kayla! I always wonder how you guys stay so strong but you are right "when strength is your only option, you stay strong" although I don't think I would ever be able to be even close to as strong as you guys are. We will continue to pray for all of you. Betty Criesco

  11. Oh Miss Kayla Rose, you are one strong girl, just like my Emilie Rose. We are praying for you!!!!

  12. God gives you only what you can handle. I'd say god was right: you are handling this in the most inspirational and beautiful way. Kayla is too. God knows she can handle this and persevere. She will recover after all of this and live a beautiful long happy healthy life. We go to church every week and say a prayer for her (in addition to every day). Be strong. Be brave. Be wise. You can and WILL get through this and have worry-free nights again. Your day will come. XO

  13. Hi Kayla and family from Rebecca in Cartersville GA. I heard about you guys through a friend of one of your friends and she asked that I send you a message, from one cancer survivors mom to another. My son Dalton ( was diagnosed with Anaplastic Large Cell Lymphoma on December 17th of last year. He has been in remission now for 9 months and is doing fantastic. I am so sorry to hear that you are going through this, especially at Christmas, which seems to make it harder somehow. I will pray for you everytime you cross my mind, because I know beyond a doubt, that what got us through Dalton's cancer was that people lifted us up to God and that he held my son and our whole family in the palm of his hand. If you ever need to talk to someone that has been there, please feel free to message me at
    Praying for you now,

  14. Thinking of you guys and praying for you.Stay strong let Kayla know we miss her at Lu Sutton!