It's officially Fall!

I want to post so much more than I do, but I always seem to get distracted when I begin a post. I am trying to stay on top of it as much as I can with all of my running around and visitors. If I don't post think of no news as good news ;) Smaller updates in between posts are always on the Team Kayla Facebook page!

So some updates since my last post:

- All of my treatments are going really well. I've gotten to know all my radiation therapists and even though I've only gotten chemo three times a three nurses know me there. Even the parking attendant at the cancer institute lot recognizes me as the girl who always smiles. I can't say he's wrong. It sure makes the time in Hershey much more enjoyable! And no major side effects yett!

- The weekend after week one of treatment was busy, but great! The Peanut Bar put on an amazing event with The Darren Daulton Foundation. Johna and Billy did an awesome job along with the help of so many other friends (Carol Pope if you read this I think the picture looks fine in the frame!) On Saturday we of course watched the Penn State game! We then went to dinner to celebrate my early birthday ad John's belated! Sunday, we got our family photos done by Tammy Martines! I cannot wait to see how they all came out. Plus, the outfits we wore took all of week 1 treatments to pick out so it better have been worth it!!

MY BIRTHDAY:  The post important part of week 2 ;)
Overall itis been like a birthday month. I'd say week but it keeps extending! I have some amazing friends that can brighten day in the silliest and most amazing ways!

Things I got for my birthday (sorry if I left anything out) :
 
- I got a meet & greet with Hunter Hayes at the Bloomsburg Fair - Thanks Chan <3

- Pre Game Field Passes for Michigan & ADA seating - no getting hit in the head at games
-A Team Kayla Sweatshirt for Gilly (hahaha a great one- Liv)
 
- Really beautiful blue & white flowers from my Penn State Birthday Buddy.
 
      I got a ton of other things too, like oreos and Uggs and a princess balloon, but I don't think I could name them all on here!






I spent this past weekend at John's. It was relaxing. We went to Ally & Jake's housewarming party and to dinner with his parents too. We also got to see the progress on Lauren and Peter's house, which is almost looking like a house with all the walls there! It was a much needed weekend of a Penn State Bye week and watching Boy Meets World (which I also got as a gift), although I did have another small seizure.
 

This post was kind of a mess of things that have happened since my last post. Sorry for the craziness of it all, I tried to go in order. I hope I didn't forget anything on here that I was supposed to add, I'll add more later on if I did :)

<3

"Believe you can and you're halfway there." - Theodore Roosevelt

 -- Thanks for the inspirational card Kerrie :) WEEK #3!!

And soo treatment Begins!!

Let's start from after my last post. I had tons of testing that needed to be done before treatment could really start. On Wednesday I got blood work, a chest x-ray, an EKG, and did a simulation with my radiation mask and the angles the radiation has to aim. 

After all my testing I spent the rest of Wednesday torturing Tara and all her roommates until she took me back to State College on Thursday after a great lunch with Ashley. She's got an incredible story that I'm so happy she shared with me and she's been a great confidant through this experience! :)

I couldn't wait to get back on Thursday because Allison, Chelsea, and Ashley didn't know I was coming. Although during the day Friday I ventured on campus to see as many people as possible, most of Thursday and Friday night consisted of having people visit me, which made things more relaxing! 

Game dayyyy!!!!!! I was so excited to be able to tailgate and get back into Beaver Stadium. In order to save my energy I hung out with my roommates until about 1 before walking up to tailgate. Even starting that late was tiring. I stopped by Nittanyville because my fellow, amazing committee got together and got me a quarter zip! And I got to wear my credentials finally ( name tag ish ). I finally got to visit Mrs. Bifano's tailgate on the way back from the stadium to our tailgate! It worked out great. We went in and the game kept us on our toes. With just a few minutes left I had 1 very small seizure, so we watched the end on a television. But we had a doctor's appointment today and all is well!!

THANK YOU NITTANYVILLE CC!!! LOVE YOU ALL ( ignore John) . My quarter zip is still packed..

Sunday I went home and got to fit in a great dinner and packer watching plans at The Coach with Jake and Mindy! Jake finally got to meet Gilly and I finally got a Packers t-shirt! 

Today was the first day of treatment! It was a long day but most of the length was waiting for my chemo to arrive. I realized today I didn't tell a lot of people I got the IV trial that wouldn't respond as well with just the pill so we do the IV first then the pill after the 6 weeks. The IV is just once a week so it's not bad. The radiation today was faster than the simulation haha. Plus I'm still fascinated by the whole machine and process!

HAPPY BELATED 24th BIRTHDAY JOHN TECCE! In his honor I added more pictures than I usually do! It wasn't bad. Easier when he does it :p 

All in all, things have been going well! :) 

P.S. shout out to Jeff and the rest of the amazing Lowe family for having this shirt make it here a few days before this great guy arrived! 

First Post of The Best Month, September

September is my birthday month so I am biased! I do love autumn and football as well, of course.

On to the amazing day I had in Philly at the Darren Daulton Foundation. There are some pretty incredible people in this area that made big things happen and I cannot thank all of you enough. I was able to meet Darren! I got a personalized signature on my #RightOnFightOn t-shirt along with a baseball signed by numerous other players that were there!

Meeting another person that not only shares a similar story, but is also going through it at the same time is an incredible feeling. You hear so many comparison stories all the time, but to have some who also has a glioblastoma, has been through the same surgery, and is already undergoing the next step that I have coming up (radiation & chemo treatments) was a different experience. I am lucky be able to say I have had such an opportunity :)

Other than that everything else has been going great! I'm showing progress with occupational and speech therapy. Occupational is definitely slower and more frustrating for me, but I'm trying my best to work on not getting frustrated! We are still waiting to hear about the results from that final test so I can get official date of when the treatments will start. I feel like it has been a lifetime since they sent out that tissue sample! We will know this week, but I feel like I have been saying that for while as well!

Before we were leaving the golf outing a women came up to me and said she read my blog before. I am always in awe of how far my blog has spread and that I've gotten noticed in public for it twice. I would love to know how far my blog has spread. I know people have the option to post on the blog, but my email is kayla.nakonechni@gmail.com or you cam send a message to my Team Kayla A

Facebook page! I'd be interested to know people's stories, how you found out about my blog, and where you're reading from! People say that my blog posts inspire them- I have 35,000 views since I started this. I'd love to know where you all come from and have my viewers inspire me a bit If you don't mind!

Before I end this 2 thing: 
1. I will be up in Penn State for Central Florida this weekend! :) I won't be the student section, but baby steps!  
2. Congratulations to all the THON 2014 Captains! So proud of you all :) FTK <3

Just a short update! PSU VS. Syracuse

Thursday, I met with the radio- oncologist. We still don't have an exact date on when it'll start because we have one test to come back. Other behind the scenes work are occurring now like a physicist is working on the angles of which the radiation will hit where the tumor was. All very interesting things! I also got a mask set for my radiation. It looks like a basketball net shaped tightly to my face. You can talk and breathe with it on though so it's just there!

I am so excited to say that I feel well enough to go to the Penn State / Syracuse game today! I am on my way as I write this actually! We weren't 100% sure if I would feel up to it, but I'm going to give it a try! A true Penn Stater :p I won't push myself by any means if I don't feel well!  

I padded a baseball hat with gauze and brought ear plugs to reduce the noise level. It won't be quite the same as the shivering, crowd shaking, student section, but I know that being back watching the team in action will make me smile. No matter the outcome on the score board! (a win would make the smile a whole lot larger though). 

Ill keep everyone posted on how the day goes overall on Monday! I'm so excited to see all my friends too. I hope everyone has a great day. :) wish me luck with my ear plugs because I heard those penn state fans can get rowdy ;)

WE ARE....  

Sorry I took so long to posttt!

I am so sorry that I've been terrible at updating this since John was here last weekend, especially because quite a bit has happened! I really have wanted to, but things have been so chaotic with appointments and visitors it's been hard. I really wanted to write this post myself because I have been doing awesome since surgery and this is a great way to show it! 

I have to start out with the greatest news of all, my puppy, Gilly! She's amazing. She's been taking up most of my time, but in a good way, of course! She was named after my neurologist and is just the best! She was a present from Joanie and Joe and I couldn't of asked for anything more! She's perfect! Here's the princess herself! 

My stitches are already covered by my hair so they are barely visible (which is less bothersome for everyone who has to see them :p). And they only bother me occasionally, not too much pain other than laying on them wrong, headaches, and some pulling- which is expected!! 

On Tuesday we met with my neurosurgeon. My biopsy came back. I was diagnosed with a grade 4 Astrocytoma. The doctors were not expecting that, but who could predict that? The signs were really not there for this type of malignant tumor. The tumor was all removed with the surgery though, which is great news though! Now we just needed to meet the oncologist to keep learn the treatment!

On Wednesday I had speech therapy and occupational therapy! The goal is to not get too frustrated with myself :p it's hard and I'm working on it! I make stupid mistakes with my speech sometimes but I think I would make them without having brain surgery! Occupational therapy is harder but that's the toll the seizures have taken on me over the past few months along with the surgery. It'll take more time but it will come back! 

On Friday we met with the oncologist. He was amazing. I got really lucky with all my doctors at Hershey! I couldn't ask for a more amazing, compassionate team of doctors on my side! He discussed our plan to make sure the cells don't grow. We will do 45 days of chemotherapy pills and about 30 days (6 weeks) of radiation without holidays and weekends. There's pretty much no side effects at all which is also good!

On Thursday we will go to Hershey to see the radio-oncologist. I have a few tests that need to be done like a cat scat and blood work! I even have to get a mask made for my head that allows the radiation to trigger the same exact location everytime they give the treatment. 

Again, sorry for being really slow on the update! I do promise to be more on top of it now and keep all of you in the loop. I feel terrible that I've been so behind.

As always, thank you for your thoughts and prayers! I have the most amazing support system behind me- you guys never cease to amaze me! I have an army and a half!

P.S. I feel like I'm missing something from this post.. So I may need to add something more if I really did! Maybe I didn't!

Home sweet home

Kayla wanted to help me write this post! She has been home since Thursday afternoon relaxing and healing and she wanted to make sure everyone is caught up.

A few highlights of the last few days:

- Kayla has still not had a seizure since Tuesday morning! Today is her first day off of the sedative, which she takes to subdue them, but so far, so good.

- The use of her right hand has progressed significantly each day. On Wednesday and Thursday she could barely open it, and this morning she was wiggling her fingers and can even point with one finger. Check it out - https://vine.co/v/hOJQuTpibUL

- Kayla's language has been up and down over the past few days, mostly due to the combination of swelling and medication. She loves to talk, so this has been the only area of frustration for her. Still, it has improved day by day and has even provided a few laughs for her too.

- Her relaxation at home has included visits from family and friends, watching movies (especially Pitch Perfect), and plenty of sleeping.

- Kayla's attitude continues to be nothing short of incredible. That smile that we all know and love remains painted on her face.

- Kayla wants you all to know how truly grateful she is to have such an amazing support system. She wants to sincerely thank everyone who has been in touch and those who have sent flowers, cards, gifts, and, of course, chocolate.

Here are some pictures from the past few days

Thursday

Kayla had a few visitors to make her last morning at Hershey an easy one. She was happy to be heading home though.

Her ride home was very comfortable, as you can see!

She arrived home to flowers, balloons, and even a huge welcome home banner made by her Uncle Roland and cousin Mindy!

Friday

Kayla had a number of visitors, including her future puppy, Gilly. She plans to bring Gilly home later this week once the next steps of her recovery are figured out.

She also finally got to shower and clean up!

Saturday

Kayla loves all of her gifts! She is so thankful.

Last night before going to sleep...can you tell she loves purple?

This coming week, Kayla has a tentative check up scheduled for Tuesday with her neurosurgeon in Hershey. We expect the biopsy results around then as well.

Thank you for keeping Kayla in your thoughts and prayers! She continues to amaze us.

- John

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