Welcome_Blog 

My name is Kaitlyn and I would like to welcome you all to my first blog post. I just wanted to quickly introduce myself and tell you all a little story on why I decided to start this blog. Four years ago my life was turned upside down because I hear the doctor say these seven words, “you have a mass on your brain”. Then I was finally diagnosed with a are benign (non-cancerous) brain tumor known as dysplastic gangliocytoma of the cerebellum or it also has another name lumerity duclos disease. lumerity duclos disease. If you want more detail and see more picture please check out my other page at (My Brain Tumor Story).

This past year on February 23, 2015, I had surgery to remove the tumor because it ended up growing and causing a host of different problems.

Even though the surgery went great and my doctor was able to remove 90% of the tumor. I ended up having many complications after but through it all I kept a smile on my face because I knew it’s a part of my journey.

Right now it’s July 20, 2016, while I rewrite this intro/blog post. I also want to manutention that I was finally diagnosed with genetic epilepsy (December 2015). had genetic testing done for my PTEN gene and also found out my vocal cords herniated due to the chiari malformation/brain tumor.

This is my story and life journey with a rare brain tumor and to be honest with you all it’s an extremely hard life but I’m also at the same time honored to walk this journey and to be an inspiration for others. Please follow my blog if you would like to walk this journey and fight for life. Lastly, please don’t hesitate to leave a comment or message me. You can also find my on twitter, Instagram, tumbler, youtube and Pinterest.

 

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Brain Surgery Date_feb 23,2015 

Hi everyone, today I finally finalized the brain surgery date. It’s going to be on Feb 23, 2015, at the University of Chicago Medical Center. Now that the date is in the calendar, I’m feeling at nervous feeling in the bottom of your stomach. I know this feeling is okay to have because it’s surgery and there are always risks and complication when going under for anything. Over all, I know this is very important for me and my overall health/every day living. Having this tumor removed will hopefully help with the neck pain, headaches when I cough/laugh/bend down and minimize the tics/movements. I can’t believe I will be having my second brain surgery at the age of 23 year old. Before I end this blog entry, I want to say that I’m a little excited for my surgery/hospital stay. Yes, I know this is really weird but I like doctors, nurses and getting my blood drawn because I like the medical field it’s all so interesting. 

Brain Surgery 

Yesterday my mother and I went to the University of Chicago Medical Center where I had a scheduled appointment with a neurosurgeon. This was our first time meeting with this doctor but he knew about my story because he talked to another doctor in the neuro-department. I wish I could say everything was great but that would be lying to you all. It was extremely scary to face true facts about having a brain tumor and surgery. He first talked about what would happen if I didn’t go through with the surgery, it could lead to death. Then he went into surgery and all of factors and risks with having brain surgery. Then my mother and I talked to the head nurse for while, she was great help/support. Now we are at a point in scheduling the surgery and everything else, it will pronely happen sometime early February. Yesterday my mother and I went to the University of Chicago Medical Center where I had a scheduled appointment with a neurosurgeon.
This was our first time meeting with this doctor but he knew about my story because he talked to another doctor in the neuro-department. I wish I could say everything was great but that would be lying to you all. It was extremely scary to face true facts about having a brain tumor and surgery. He first talked about what would happen if I didn’t go through with the surgery, it could lead to death. Then he went into surgery and all of factors and risks with having brain surgery. Then my mother and I talked to the head nurse for while, she was great help/support. Now we are at a point in scheduling the surgery and everything else, it will pronely happen sometime early February. 

My childhood friend_Paddington the Bear

Yesterday I went to go see the movie Paddington with my mother. It made me cry a little because I grew up with Paddington. My mother use to read me his stories and she even designed a lamp that was made for my bed room.

Over all the movie was great, everyone should bring their child to see it because it’s filled with adventure, over coming fears and never giving up. Thanks Paddington, you brought my childhood memories back too me.

24 Hour_Home EEG

I have some very exciting news that I received about a week ago. When I met with my new neurologist and we talked about what the next step would be in my care for my seizures. She suggested that a 24 hour EEG would be the best next step but she wasn’t sure what type of EEG. There are ones that you are admitted to the hospital for the 24 hours or there are another kind and where you are hooked up at home for the 24 hours and you just go along with your day. Well we were talking to her about the pros and cons of each, I personally was hoping for the home EEG because I do have some experience from my first seizure and having a 24 hour EEG in the hospital. It’s definitely not fun at all because you were stuck in bed and you can’t move.

I got a call from from a private EEG Company that works with my hospital, so I can set up a time and date for them to come to my house and hook me up for a 24 hour home EEG. The lady on the phone asked me if I was available on January 18, 2016 at 10 o’clock in the morning, I did not hesitate or even check my schedule and I said “yes I am”. I am so excited to do this next step in my journey with a brain tumor I know it’s scary because it’s a new experience but I know I’m not alone in the process I have so much support from my friends, family and God. Experiencing this new step in my Life Jenny, I can be quite scary because of the unknown but I know that I’m definitely ready for what God has in store with me. I hope you guys follow me on January 18 because I’m planning to do some sort of video or photography, that documents in my experience with having a 24 hour home EEG.

EEG Pictures 16

24 Hour_Home EEG 

I have some very exciting news that I received about a week ago. When I met with my new neurologist and we talked about what the next step would be in my care for my seizures. She suggested that a 24 hour EEG would be the best next step but she wasn’t sure what type of EEG. There are ones that you are admitted to the hospital for the 24 hours or there are another kind and where you are hooked up at home for the 24 hours and you just go along with your day. Well we were talking to her about the pros and cons of each, I personally was hoping for the home EEG because I do have some experience from my first seizure and having a 24 hour EEG in the hospital. It’s definitely not fun at all because you were stuck in bed and you can’t move.
I got a call from from a private EEG Company that works with my hospital, so I can set up a time and date for them to come to my house and hook me up for a 24 hour home EEG. The lady on the phone asked me if I was available on January 18, 2016 at 10 o’clock in the morning, I did not hesitate or even check my schedule and I said “yes I am”. I am so excited to do this next step in my journey with a brain tumor I know it’s scary because it’s a new experience but I know I’m not alone in the process I have so much support from my friends, family and God. Experiencing this new step in my Life Jenny, I can be quite scary because of the unknown but I know that I’m definitely ready for what God has in store with me. I hope you guys follow me on January 18 because I’m planning to do some sort of video or photography, that documents in my experience with having a 24 hour home EEG.