Have an amazing holiday with your families and friends! Enjoy every minute of this season :)
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 :)
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.
BUMP #1
- 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 :)
BUMP #2
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!!
BUMP #1
- 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 :)
BUMP #2
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!
- 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 :)
<3
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!!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!!
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
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
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
Saturday, August 31, 2013
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....
Sunday, August 25, 2013
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!
Sunday, August 18, 2013
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
Wednesday, August 14, 2013
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
Tuesday, August 13, 2013
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
Sunday, August 11, 2013
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
Tuesday, August 6, 2013
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
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
Thursday, August 1, 2013
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
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
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!
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!
Tuesday, July 30, 2013
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 :)
Monday, July 29, 2013
Updates From July
July has been getting crazier than ever with everything, so I'm going to try and sum it up in bullet points. It is not even over yet and I still another appointment at Hershey to wrap up the whole month. I will do the best I can so that I don't ramble on about all the changes because each day I feel like there is something new to take on. Some days its very small other days it feels like I hit a brick wall, but either way like the blog title says, (courtesy of the bracelet Tara got me that is such a great reminder) I will get through it because I'm tougher!
- July started as an adventure with the 4th. My first day time seizure! That was my first performance with people around and it felt like all eyes were on me.
- 5 days later, July 9th I was just casually walking to class, (yet another experience) while finishing up crossing the road, two girls had to help me take my medicine.
- By July 13th it became more comfortable to be helped on the side of the road. Almost second nature by this point :P
- The medicines were increasing, but so were the seizures and so were the side effects. Headaches, tiredness, irritability. It was a slippery slope.
- Soon enough I was having more than one seizure per day.
- July 19th, after meeting with a neurosurgeon at Jefferson, I had 6 seizures that day and that number has fluctuated between 5 and 9 until today (July 28th) I only had 3. Maybe my stress levels are finally decreasing.
- Meeting with a neurosurgeon was tough, but whatever this thing is I am excited for it to come out and for the seizures to just end (I know I haven't talked about what it is exactly, but we won't know for sure until it is out so its all up for debate).
-I deferred my grade for my summer class and decided to do an independent study over the next year to make up for what I missed because of the stress, medicine side effects, how all my appointments have fallen, and when my surgery may fall.
- The most recent thing to take in is that I won't be recovered enough to be back for the fall term. That is really hard for me to take in. Missing a part of my senior year is a thought that constantly makes me sad, but I know that I will not miss all of it and will be able to go back part way through to enjoy it with all my friends!
I think that covers almost everything. If I missed anything whoopssss! We can blame it on my new medicine that causes some minor memory loss ;) Thank you for reading so far. I'll update after Tuesday. Hopefully I'll get better as I go
<3
- July started as an adventure with the 4th. My first day time seizure! That was my first performance with people around and it felt like all eyes were on me.
- 5 days later, July 9th I was just casually walking to class, (yet another experience) while finishing up crossing the road, two girls had to help me take my medicine.
- By July 13th it became more comfortable to be helped on the side of the road. Almost second nature by this point :P
- The medicines were increasing, but so were the seizures and so were the side effects. Headaches, tiredness, irritability. It was a slippery slope.
- Soon enough I was having more than one seizure per day.
- July 19th, after meeting with a neurosurgeon at Jefferson, I had 6 seizures that day and that number has fluctuated between 5 and 9 until today (July 28th) I only had 3. Maybe my stress levels are finally decreasing.
- Meeting with a neurosurgeon was tough, but whatever this thing is I am excited for it to come out and for the seizures to just end (I know I haven't talked about what it is exactly, but we won't know for sure until it is out so its all up for debate).
-I deferred my grade for my summer class and decided to do an independent study over the next year to make up for what I missed because of the stress, medicine side effects, how all my appointments have fallen, and when my surgery may fall.
- The most recent thing to take in is that I won't be recovered enough to be back for the fall term. That is really hard for me to take in. Missing a part of my senior year is a thought that constantly makes me sad, but I know that I will not miss all of it and will be able to go back part way through to enjoy it with all my friends!
I think that covers almost everything. If I missed anything whoopssss! We can blame it on my new medicine that causes some minor memory loss ;) Thank you for reading so far. I'll update after Tuesday. Hopefully I'll get better as I go
<3
The Beginning to June
There have been so many changes happening in my life over the past 6 months I decided to write about it. Although I am a terrible writer, so it might not be the best decision in the end :P . It will, at least, be a great way for everyone to keep up with what is going on so I do not forget anyone in all the craziness (or bananas as I more commonly refer to it.)
I feel I should apologize for this now:
1.The same word used a million times
2. Grammar- Olivia, I'll do my best without your proof reading
3. Rambling- I can hopefully keep it to a minimum
They say the best place to start a story is the beginning. At this point most people know it or have some idea, but just in case, here is the general idea for those who don't. March 10th I woke up at 7AM with right arm and right eye movements and woke up John. After a while they subsided and we began to think nothing of it. March 19th at 2AM I woke up with the same symptoms, but this time we took more concern. After an MRI of my brain there was an abnormal finding on my parietal lobe. I went to see a neurologist in Philly. I was diagnosed with nocturnal seizures and I was put on anti-convulsion medicine.
On April 24th I had a full seizure or tonic conic seizure around 7AM. I had to go to the emergency room because it was my first one. While there I was put on a new medicine. After that things seemed great a whole month with no seizures!
I saw a new neurologist after that is from Hershey and has an office in State College for convenience. He is amazing and I am really lucky to have him as a doctor. He is constantly in contact with me and is always keeping me in the loop between Hershey and State College.
June 7th, however, the same partial seizures started all over again. Occurring in the morning every week and a half to two weeks. This lasted all through the remainder of June.
<3
I feel I should apologize for this now:
1.The same word used a million times
2. Grammar- Olivia, I'll do my best without your proof reading
3. Rambling- I can hopefully keep it to a minimum
They say the best place to start a story is the beginning. At this point most people know it or have some idea, but just in case, here is the general idea for those who don't. March 10th I woke up at 7AM with right arm and right eye movements and woke up John. After a while they subsided and we began to think nothing of it. March 19th at 2AM I woke up with the same symptoms, but this time we took more concern. After an MRI of my brain there was an abnormal finding on my parietal lobe. I went to see a neurologist in Philly. I was diagnosed with nocturnal seizures and I was put on anti-convulsion medicine.
On April 24th I had a full seizure or tonic conic seizure around 7AM. I had to go to the emergency room because it was my first one. While there I was put on a new medicine. After that things seemed great a whole month with no seizures!
I saw a new neurologist after that is from Hershey and has an office in State College for convenience. He is amazing and I am really lucky to have him as a doctor. He is constantly in contact with me and is always keeping me in the loop between Hershey and State College.
June 7th, however, the same partial seizures started all over again. Occurring in the morning every week and a half to two weeks. This lasted all through the remainder of June.
<3
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