Wednesday, July 31, 2013

Questions Are Being Answered! (Sorta!)

So after a crazy day in the sweetest place on Earth (Hershey, of course!) I was wiped out and did not get around to writing this post. I had all intention of doing this last night, but I have about 24 wires connected to my head (we will discuss this more later) and living with these wire for 48 hours is something to master in itself. ( I DIDN'T EVEN GO TO CHOCOLATE WORLD!!!)

Yesterday answered quite a few questions that have been unanswered for what feels like ages! Surgery will be August 12th, but the exact time of it is to be determined! It will be at Penn State Hershey Medical Center. It is a 6-8 hour surgery with a 3-4 day recovery period. (Also, I'm thinking a Pre-surgery Hershey Park Day as a distraction on August 11th ... even though that might sound crazy. I like the idea.. we will see!)

The reason I say that questions were sorta answered is because, although there is a pretty high chance it is a tumor, we will not know 100% until after they remove it and the pathologist gets his hands on it. Another thing we won't know until after surgery is whats next for recovery like radiation, chemotherapy, occupation therapy, physical therapy, or speech therapy. That all depends on what they see when they get in there and what happens when I get out. There will definitely some weaknesses in my motor and language it just depends on how long it lasts afterwards. They said it can last a few hours or it can last a few days or even longer.

I also got the electrodes that watch my brain waves put on yesterday. That took like 2 hours. There is gauze, glue and way too many wires coming from my head right now. I got to see how it records waves when I blink, laugh, and even swallow. It's really weird - they will literally know every movement I made over 48 hours haha. It is worse than big brother. I have a journal and have to record when I eat and watching TV and stuff so that they can skip over those silly waves and go to the seizure waves and the sleeping waves cause those are the most important ones!

Yesterday after getting home we talked a lot about my attitude towards the whole situation. I've been very calm and strong overall. I cried over not being able to go back to school in the fall and the thought of possibly missing out on being a THON captain which I was really hoping to do this year, but not the idea of having brain surgery. There are certain things I can't control. Surgery is one thing I have no other option for. This tumor needs to come out. I don't have a voice in that. I can't tell them to leave it in there. I guess that's what has kept my attitude so positive and very much level headed. I've come to terms with surgery but the smaller things like missing a semester of my senior and THON are things that I didn't quite think about right away when surgery was first mentioned. I thought about surgery for weeks and prepared myself for it more slowly. These smaller things are kind of getting thrown at me at times when I'm not quite ready or I have my guard down. I get bad news already and then find out I cannot start my senior year- it doesn't continue well from there. Overall, I am doing well. A little scared for the actually idea of getting surgery, but ready to have this thing out of me!

Yesterday, for inspiration, I wore my THON dancer T-shirt. Less than a year ago kids much younger than me were my inspiration to raise thousands of dollars to stand for 46. Against fatigue and muscle soreness, I wanted to stand for their strength, honesty, courage, and wisdom. Now, 5 months since I stood for those amazing children, they are still my inspiration to fight and smile. I couldn't ask for a better philanthropy to be involved in. It's a constant reminder of hope and everyday it keeps me smiling. I thought as I wrote this part of my post today I would cry, but here I am smiling and honored to be a part of THON in the first place. For The Kids. For The Fight. For The Cure.

Tomorrow I go back to Hershey to get the EEG things off (YES!) and meet the anesthesiologist for my surgery! I will keep you posted on how the both of those go. I'm hoping to go to Chocolate World... Being in Hershey two times in one week without going, that's just torture!!

Thank you everyone to who has reached out to me, in any way, shape, or form, it means the world!


  1. Get some chocolate already will ya? :) Great update - keep them coming. Write, write, write! :)

  2. Kayla, I admire your incredible strength and courage! I'll be praying you... <3

  3. Your courage, strength, wisdom and especially your honesty leave me with no doubt you will be triumphant. THON is truly made better by having members like you, no matter what your role in THON for your senior year may be :) One of my favorite lessons that I've learned from a Four Diamonds family is "sometimes courage is just putting one step in front of another", & I hope you can find comfort in that! You will be in my thoughts and prayers over the upcoming weeks.

  4. Hi Kayla, I just heard about this and read every word! I'm praying for you and keeping you in my thoughts! Stay strong and have a speedy recovery!<3