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

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