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.