Tuesday, August 12, 2014

1 year since surgery!

I cannot believe how long ago it feels, but today 8-12-14 is one year since my surgery! I don't even know where to begin with everything I want to say, but first I'm going to start by updating everyone. 

I successfully completed my spring semester with a 3.5 and I could not be happier. I will be going back for the fall semester on the 23rd. I will graduate in December! I recently took the GREs and I will be applying to graduate school shortly and can't wait to see where it will take me.

This summer has been great to me. I've been relaxing at home with Gilly and my parents with occasional trips to West Chester and State College- because I have my license back finalllyyyy. I went on vacation to both California and Sea Isle City with the Tecce's and I had a blast with them in both places! Also took two online classes in order to lighten up my load in the fall. The classes were a lot of work, but in the end they were worth the work.

No blog post would be complete without me telling you about my ups AND my downs. My chemotherapy had dropped my platelet levels significantly and took almost 6 weeks for my body to start making the platelets. The numerous platelet transfusions I had never brought them back up. This is when they decided that I would have to wait for my body to make them on its own. Now, I'm on a new chemo drug. 14 days on, 7 days off and it's a pill I take in the morning and at night. As of my last MRI scan I was still considered No Evidence of Disease!!! Yayyy!

Other things that have happened since my last post (not in any order just as I think of them):
- we went to THON in February and it was of course amazing! I was so honored to be there. It was an experience I will never forget.

- Gilly turned ONE! And that was a great celebration :)

- I spoke at Penn State's Relay for Life

- I was granted the Diamond of Strength through the THON directors. Nothing will ever compare to the love I have for THON, The Four Diamonds Fund, and all the amazing people involved from the past to the future. I find so much support and hope because I have THON in my life and the people it has introduced me too. 

- My amazing roommates and friends all graduated and are off doing real world things! I am so excited to see the amazing things I know they will do. I couldn't of asked to live with and meet better people while all of this chaos continued throughout the year. They all mean the world to me.

- Family and friends had Team Kayla in the Broad Street Run! It was awesome to see them all run by in their purple T-shirts. Next time, maybe they'll train before it.. Maybe not since they all got through it ;)

Also, and most importantly, I was painted on the inspiration mural in State College. It is such an honor and I could not thank my friends that were involved and the artist, Michael Pilato, enough. It was the most amazing surprise. It makes me tear up with joy knowing I get to be on there with so many amazing people. Also, thank you to the people that stopped by and took a picture with the painted version of me. It puts the biggest smile on my face when I see that. I am still in awe of being on the mural- it gets me excited every time is see it. I don't think I will ever get over that.

Now that I covered all the things going on, I wanted to finish this post with some things I learned and thought about a ton over the past year. 

When I was diagnosed (about a week after having surgery) I had some many things running through my head, but the only way I knew how to get through it was through strength. The strength I had in me and the strength I found in others. Friends and family and people I didn't even know helped me get through this from the strength I gathered from them, their prayers, and all the well wishes. You all helped me in my battle.

I go through the year and I can remember everything someone did for me. The calls,the texts, the cards, the gifts, even just their company. It was one of the most amazing thing to me- it formed Team Kayla. There was more good from this battle than I would have ever imagined. I reconnected with so many people I lost touch with. Relationships I already had were strengthened, some were weakened when they distanced themselves from the diagnosis. I found so much good in a time when some may only think of the bad.

I met an older women that said "She just wanted to forget she ever had it." I would never want to forget. It has changed things in my life but it also reassured me of certain things too. Faith, hope, friendship, strength, and above all love will get you through anything. You just can't lose sight of that or lose sight of who you are. Cancer is a battle that so many fight... But my thought is that it makes you appreciate things more in life. Makes you thankful. I even forget some times, but their is always something that reminds me. Usually it's the quote on my phone background.." I want to inspire people, I want someone to look at me and say, because of you I didn't give up" 

Thank you to everyone that still checks in with me. I love hearing from you all. The simplest check ins make me smile- even just hellos! Thank you for always asking about me to my parents and John- they always pass on the message. Also, thank you for understanding that I've been really slow to sending my thank you's.... I got more love through this than I can ever give back. 

I hope I included everything I should of! As usual I feel like I forgot something. 

I'm still fighting the good fight, but I'm enjoying everyday while doing it! I'm sending positive thoughts to all who need them as I always have other fighters in my thoughts throughout the day. I'll keep posting on this just less frequent (clearly). Team Kayla on Facebook has some minor updates in between my posts (thanks to John!!!)

Life is tough, but I'm tougher.
Love you all,

P.S here's some more random photos from spring/summer!

Monday, December 23, 2013

Happy holidays :)

Got my blood work back and all looks good! We are still waiting to hear the next step from the doctors with my chemo. But most of my counts are near normal and above all my platelets!! Also, I got my white blood cell shot! All this good news is an early Christmas present :)

Have an amazing holiday with your families and friends! Enjoy every minute of this season :)

Friday, December 20, 2013

What's life without a few bumps?

Hi all, wish I could say that this post was a a fully positive update but it isn't. I will update you on the two bumps I have had since my last update. 


- I had a follow-up appointment with my neurologist that went great on November 13th. That night Tara and I headed up to Penn State. The next day I had an appointment with the office of disability to assure that I was prepared to come back to school and that I looked into all the options available to me. That is where I noticed that my hand was not working as well and that I couldn't even write.

-Friday I met with my adviser and got my classes situated for the Spring! (Which is still happening despite the setbacks). Overall it was a good day, I met with another one of my old biology professors that had been checking in with me and even met a professor I will have this semester. Later in that night everything was good; went to dinner with Tara and then had a Kiwi frozen yogurt with a bunch of people! It was all cut short by a seizure so I went home to rest up.

- Saturday was a relaxing game day and tailgate. It was also a win so that always makes for a good weekend! Sunday was a very rough day. I had a headache that would not go away from the night before. Sleeping at night became nearly impossible because my temperature would go from on extreme to the next and I couldn't get comfortable. On our way home Sunday I did get to see the progress on Lauren and Peter's house! That is always an exciting venture :)

- After being in contact with the doctors and trying to figure out why I was getting worse than even after I had surgery they scheduled a CAT scan. The scan showed swelling and I was put on a steroid to reduce the swelling.  I was having trouble moving not only my right hand, but I was even dragging my right foot as I walked!

-That Friday, November 22nd I had a follow up appointment in Hershey with my Radiation oncologist! We brought my CAT scan from home in case he wanted to see it and when he did, he was awestruck by the swelling he saw compared to the MRI scan I had a month earlier. He scheduled another CAT scan, this time with contrast to get a better view of the swelling. He called in numerous doctors to get their opinions and after much worrying I got put on an even higher dose of the steroid! The dose of the steroid I am on gets reduced every week to 10 days right now, but they are doing it so slowly I don't expect to be off off it for a while. The nice thing about being on the steroid means less chance of seizures so I haven't had one since my crazy and stressful night!

Things with my hand and foot have been back to normal since the steroid, which is great news!

Also, I hope everyone had a great Thanksgiving - I'm way behind but this happened during that so I feel I should add that in :)


This Tuesday, December 17th, was a routine check-up with my neurosurgeon and then another appointment to check-in on my chemo trial. The appointments went well and my scar is healing great! I also got blood work done which is routine for my chemotherapy. After leaving our appointment we did some shopping at the outlets. Luckily we did because we were called and told to return to the hospital as soon as we could. After seeing my lab work they found that my levels were low.

I had to go to the cancer center and get a platelet transfusion. The platelet counts were critically low and had to be handled immediately. Other levels that were cautiously low were my potassium and my white blood cells. I had my blood work taken again yesterday and my platelets were up, still low though. I have to drink a water/ potassium concoction everyday for the next month to keep my potassium up.  On Monday I head back to Hershey in order to get a shot to bring up my white blood cell count. When I am in Hershey I will also get blood work again to check my levels.

Chemo is on hold until my levels are normal again so right now I have only gone through one 5 dat cycle. I did not experience any adverse side effects during the actual cycle. Although, it can be hard to tell since my body was dealing with the swelling at the same time. The next cycle will better show what I will feel like,but I pretty confident my body will handle it all the same. Just with better blood counts afterwards- MOST IMPORTANT!

That's really all for now. We will know what the plan is on Monday after we get the lab results back to see what my body has been doing all on its own these past few days! Hopefully good things :) The blog will be updated on Monday after the appointment even if its short just to keep you posted-  PROMISE! When things get crazy sometimes its easy to forget to update this, but I'll make sure to post something.

 In the meantime I hope everyone is ready for the holidays :) I am very excited for Christmas and cannot believe it's already right around the corner!! 

Monday, November 4, 2013

October- November 3rd

It's been a month since I've written on here. It sounds bizarre, but every time something happened I kept saying I'd add it to the next post and the gap has grown far too large this time. I will not leave any of the big details out (I hope!). In order to do that I am going to go in chronological order.

-  I OFFICIALLY BECAME A FOUR DIAMONDS CHILD! Some of you might not know about the Four Diamonds Fund, but they are another amazing organization to help families with kids with cancer. Read more here: http://www.pennstatehershey.org/web/fourdiamonds . Through this I was paired with Nittany Nation as my THON organization so that's amazing. Many of you know I stood for 46 in the fight against pediatric cancer 6 months before my own diagnosis.  To learn more about THON visit thon.org . I couldn't imagine my years at Penn State without THON.

- Nexttt, A huge thank you to Joe Caviston and the hard workers who assisted him with everything! You all did amazing things at my benefit at the school. I could not believe the support and it showed in the turn out and all the people wearing shirts! It was great.

- No Penn State game will ever compare to Michigan 2013!! From the amazing tailgate and friends, to being on the field and the nail biting finish!! I never thought I'd see such a great game. I saw 5 minutes from the field and the rest from the 40-yard line, first row. You could hear the players getting yelled at :P  I even made a friend toward the end of game! Somewhere out there is a 1949 alum with a Paternoville hat. It might of been my only one, but seeing the smile on his face made it worth it! He was so excited and even asked for my autograph, but no one had a pen so he has a team Kayla bracelet!

-Thanks to The Coach and all the people that made that benefit a huge success! The way our community came together was incredible and I was in awe of the amount of people that walked in and out of that place, the baskets made, and the people that simply were willing to help out. I am going to single out my Aunt Mary because none of this would have been possible without her hard work!

-NO MORE RADIATION! Self-explanatory. I'm Done :)
I still have my chemo pill, but that is on my own, is 5 days out of the month, and it's for a year.
Above all we received good news last week! The MRI showed some swelling which is normal after treatment. Other than that there were no other issues and we are so happy to get good news :).

-Also, we won tailgate of the year!! All the annoying facebook shares paid off! It's crazy the things that can happen when my Penn State Family and Carbondale Family work together. So thank you to all who voted and put up with every post!

I think I squeezed everything in this post! Sorry I waited a month and I hope I got everything. I always get so nervous that missed I something, yikes!

Wednesday, October 2, 2013

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 :)


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

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

Monday, September 16, 2013

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! 

Tuesday, September 10, 2013

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