Pretty in purple

Hi everyone! John again. Kayla is working on getting her strength up in her hand so she can type!

The BEST news of the day is that Kayla has not had a seizure for 30 hours! This is the longest she has gone in some time and a great sign moving forward. 

Highlights from today include: 

- Her many visitors (mentioned below) making her smile and perk up immediately

- Her motor skills test is fun! https://vine.co/v/hMwKnbbKQXz

- Dr. Gilliam's reaction when Kayla told him that she will name her new puppy after him was great. Her name will be Gilly!

- A milkshake from Chocolate World courtesy of her Uncle Bill and cousin Olivia

- She ate two chicken fingers, some soup, and a Gatorade for lunch in addition to that milkshake. We are happy to see her appetite back!

Today was a little tougher than yesterday for Kayla because the local anesthesia in her head wore off overnight. As a result, she felt more pain than yesterday and has had trouble putting together sentences and thinking of words. This is probably caused by the swelling and is not uncommon. Kayla wants you all to know that she is doing great despite the uncertainty of what comes next with the biopsy results.

Kayla slept for most of the morning except for when she had visits from her neurosurgeon, Dr. Sather, and her neurologist, Dr. Gilliam. Those two echoed what her anesthesiologist said last night, which is that Kayla was amazing during surgery. Each spent over 30 minutes with us, leaving Kayla's parents and I with a number of words to Google when we get home but ultimately feeling informed and prepared. 

She also had two occupational therapists visit in the afternoon. They took her for a spin around the wing and she did great, even climbing up and down a flight of steps!

Kayla is in AMAZING hands here! From the staff and nurses to her team of doctors, there has been no shortage of communication, expertise, and genuine care for her. Thank you, Penn State Hershey!

Kayla's support system continues to amaze. Her visitors today included her Uncle Bill and cousin Olivia and her friends from Penn State, Rachel and Tommy. Just like when she danced in THON in February, Kayla lights up whenever she gets a new visitor. She also read at least a dozen messages and wants you all to know again how much she appreciates your support!

It looks like Kayla will be discharged tomorrow after a few more visits from family and friends. She will also have a speech therapist come by to work with her on word selection. More tomorrow evening!

-John

Chillin in the ICU

Hi everyone! It's John typing for Kayla. She wants you all to know that she really appreciates your prayers and best wishes and should be able to type on her own soon.

Kayla had surgery yesterday morning to remove the tumor in the left parietal lobe of her brain. She went in around 7:30am and the procedure was completed around 2pm. They removed the entire tumor and a small amount of surrounding tissue. The biopsy results on what it contains will come back next week.

Kayla was awake for the entire procedure so that the doctors could make sure her motor skills and language were not being affected. She talked to the doctors about her brother Peter and his girlfriend Lauren, what rides she rode during her day at Hershey Park, and Dunkin Donuts! After the procedure she was among the most "chipper" (in her words) patients they had seen, which is no surprise to anyone who knows Kayla. She is looking forward to learning more details about her procedure from her doctor - what else would you expect from a biology major?

Kayla had 15 visitors in Hershey yesterday! Luckily, the waiting room is large and she was able to see most of them while in the ICU. She cracked jokes, as always, and continued to spread her amazingly positive attitude!

Today, Kayla has been resting and was just moved to a different part of the ICU. She has regained a lot of strength in her right arm and hand. Unfortunately, the seizures have continued, though this is not uncommon as they can sometimes continue for a short time after surgery. Her medicine has helped though! She is looking at a return home by the end of the week.

I can't tell you how much everyone's support has meant. Kayla is looking forward to typing her next blog update soon.

-John

#TeamKayla

Tomorrow!!!

The big day is tomorrow! We have to be there at 5:30AM and then surgery can happen anytime after that! It'll be a hectic day. There will definitely be a big update on Tuesday, but we will try to figure out a plan for an update tomorrow also! Thank you for your prayers and kindness <3 

It is Getting Closer & Fast!

I feel like surgery will be here before I know it! I just wanted to give a quick update on everything! This week will be absolutely crazy but I am trying to see everyone so please text me and I will do everything in my power to see you before I head to Hershey on Sunday. I planning on posting a final post Sunday night before I go into surgery depending on how my nerves are going & how busy everything. No matter what expect something- length will depend on my pre operation jitters! 

I had my functional MRI yesterday. It was okay until we were approaching hour 2. That's when I was done. I met my neuro radiologist. He was a man of few words so it was a 5 word sentence, but the last doctor of my team to meet! So, I have met everyone that is trying to make the plan up on how to get this thing out of me. I'm anxious to hear about the photos and see if there are any plans developed for Monday... Hopefully I get a call soon!

I'm still pretty calm. I can feel more emotions now that all my other tests are done the next time I am in Hershey will be for surgery. It seems crazy. From tonight until sometime Thursday evening I am going to Sea Isle City. Hopefully some beach days lets me relax. No promises :P

Other than jitters everything else has been great. Its been so nice to catch up with people and hear from people that I don't get to talk to nearly enough. It's sad that this has to be the reason and its definitely going to sound funny but its a blessing in disguise to be able to just sit and spend quality time over the past few weeks with friends and family. I am so lucky to be surrounded by endless amounts of positive, caring people. Every day I find a new reason to be thankful and inspired! :)

Thank you, as always <3 

Happpyy Augustt!

Just a quick post about today's appointments in Hershey.

We first did some pre operative paperwork then we got to meet with the anesthesiologist. He discussed most of the procedures with us in quite some detail (I 'll spare them for Mara so she doesn't pass out <3) Above all it seems pretty straight forward and the actual surgery part of the procedure will take about 3-4 hours they think. My entire team of doctors meets tomorrow to talk about my surgery. It sounds pretty cool to me, although maybe that's just me. That means they will all make sure the are on the same page, have their plan in place, and discuss the way they will go about certain details in the OR!

After we finished that appointment we went back over to neurophysiology where I was finally released from the grips of the torturous EEG wires. The use oil and acetone to loosen the glue. It helps.. a bit. The ride home I just had oil, acetone, and the super glue they had in my hair to hold the wires in place every where. Needless to say, Chocolate World was skipped again- although this time there was amazing Hershey Cake to come home to :) - so getting the baseball hat off and the gross stuff out was a much bigger priority. 3 hours later... its still a work in progress hopefully having Mindy and Mal come shampoo me like a dog tomorrow will get the rest of it out without making my head any more sensitive.

We will head to Hershey again on Monday for a functional MRI, but there shouldn't be any huge updates for a little bit!  Thank you again for all the support. I having amazing people surrounding me and I could not be more blessed <3

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!

Pre- Appointment Update!

Just a quick update to let everyone know that my major appointment today is at 12:30. It'll be a long day and I have a smaller appointment after. Don't expect my major update to be until late tonight or tomorrow depending on when we get home and how things go. Keep your fingers crossed :)