So, today is 7 years since the day of my brain surgery....PRAISE THE LORD!!! Around the End of January in 2005 I started getting headaches in the back of my head, my mom didn't pay much attention, but then by the end of February, I had one everyday and it would not go away. So on March 1, 2005 my mom took me to the Pediatrician, He thought maybe it was a food allergy, but he decided to do a cat scan just for proticol. (later i found out that my blood pressure was out of this world high and that my eyes didn't look quite right) On March 3, 2005 I went in for a cat scan, they took us to the waiting room, and then there was a phone call for us. It was my pediatrician, he said that my brain was covered in fluid but they couldnt see clearly enough to know why, so they gave me and MRI. I thought nothing of it, just being 13, i wasn't thinking something could be terribly wrong. I had a 20 minute MRI About 10 minutes later i was taken up to the Neurosurgery department. And within 10 minutes... I was diagnosed with a Brain Tumor. Everything is a bit foggy from there on out, but i remember just asking "Am i going to die" and "will i be the same..." The Answers, were encouraging! but my life was in a spiral, and i didn't know why at 13 i would have to be going through this., 6 days later i was in surgery, to try to remove it, because it was causing some things not to function right, and it would have killed me eventually, they said that if we would have waited too long, that i would have seizured and died. The Lord must have really spoken to my mom, because she had the intuition to take me to the doctor, and my phenomenal pediatrian dr johnson knew that it was a little weird, and he knew i needed a cat scan. The Lord was just working! We were told my surgery would last about 5-8 hours...well they were wrong! I guess i always have to be the center of attention, and have to be a little bit dramatic, because quickly enough 8 hours turned into a whopping 21.5 hours! My poor family had to just sit and wait, the nurses described the process as watching Grass grow, apparetly i had a lot of blood vessels in my little brian! The surgery was Performed by one doctor (Dr. Aldana!) and his team of nurses(Renee and Kelly were my favorites)! We were told that Dr. Aldana drank a few gatorades, ate a sandwhich and went to the bathroom only a handful of times. He is my hero. The man saved my life, it took him almost 24 hours, but the man saved my life! On March 9, 2005 one surgen at Akron Childrens Hospital SAVED MY LIFE!!!! I was in the pediatric intensive care unit for a while, then got moved to the oncology floor. Never fear, it wasn't cause it was cancer, it was because i needed the best care possible! My tumor was shipped off to Johns Hopkins hospital in Boston, and they categorized it as a catagorized as an Oligodendro Glioma-Low Grade Neoplasm hahaha say that 5 times fast! We were considering doing radiation for the remaining parts of the tumor, but they decided that i'd been through enough already and that thye would just watch me. The recovery process was long, again, i only remember little things, because they gave me medicine so i wouldn't remember the trauma. I missed a little over a month of school (mom of course stayed home with me) , and gained alot of weight due to the steroids and such ( that part was not fun! ) I remember the day after i found out that i had a tumor i ended up going to school to visit everyone, and just being in a complete fog, like a nightmare that i couldn’t wake up from… Everyone was talking to me, but i honestly just wanted to be in a uniform that day, and be in class instead of having people tell me how sorry they were for me... I recieved 100’s of cards and e-mails, countless stuffed animals and too many bouquets of flowers and cookies to imagine. My School even had a special spot i the chapel where you could pray for me! Everyone was praying, literally all around the world. It was hard to imagine that my one little tumor in my head, could effect so many people! But through it all, God was my rock, and my parents and brother and sister were my best friends! I would have died without Jesus on my Side I was terrified to go back to school, because of the embarrassing lack of hair on the top of my head, i remember coming home from my first day and taking a 4 hour nap, just from exhaustion and having to tell the story 100 million times... I remember a few weeks after my surgery it was easter, and i got permission from the doctors to go to my grandma's house which is a few hours away and i was sooo excited. I also remember getting black and pink converse for easter! haha Like i said, i really only remember bits and pieces, my mom and dad are the people who really remember that time the best! But 1 Doctor on March 9, 2005 saved my life, and changed my point of view on life FOREVER! Now 7 years later, the part of the tumor that is left in my head hasn’t grown! i am feeling great, except for migranes occasionally, and i realize that Life gives you challenges, and you can either face them alone, or rely on God and Family and Friends. We will continue to do scans just to make sure mr b.t. as i call him isn't causing any trouble. cause slow growing tumors have a mind of their own. My tumor is considered stable, its just precautionary. it gives me a sigh of relief for sure though! My life verse is Psalm 46:5 "God is within her, she will not fall; He will help her at break of day." And i do not think this could be anymore true for my life. I remind myself everyday of this verse, because it reminds me that there is no reason to worry. God is in complete control over me, He will not let anything happen beyond what i can handle! Through the whole process everyone i know has been there for me. And I thank everyone who prayed for me through the years, and still lift me and my family up everyday...You all are the real hero's in my eyes...the prayer warriors!
Blessed by a Heavenly Daddy,
This was taken in January at my sister's wedding. I was healthy ( as far as we knew ) & still so tiny! haha i mean you can see my ribs. I was so excited to be the maid of honor!
This was taken the night before the surgery. Those little cheerio things were hooked up to a machine during surgery to help guide the surgen. Im sorry i look nuts...but i was a little overwhelmed!
Easter Day a few weeks after the surgery. This is the only picture we have of me during this whole time. I did not want to remember what i looked like. I was embarassed because i was getting so chunky. But my cousin Kayla convinced me to take a picture with her. Im happy we have this one!
today was exhausting. there is no other way to describe it. basically i have been having some issues lately and we think i may have a blood disorder that sometimes comes when you have noonans syndrome. and me being the special little thing i am, might have this too.
i need to see a lot of doctors though ( all my main specialists ) before we can continue with a course of action & decide what exactly we should do.
today was a special day though, both mom and dad went to the doctor with me. today i met with a NeuroOncologist at the cleveland clinic. Dont let the name scare you, it needed to happen. Basically after my surgery 7 years ago my surgen had to move to florida, then the surgen i followed up with passed away last summer of cancer, and so i was left without anyone to oversee my brain tumor case. and we were just left feeling a little uncomfortable about that. so today we met with an amazing lady & we decided some new things
1. i will continue to have yearly scans for a few more years, with slow growing tumors like i have sometimes they have a mind of their own and can just start growing again, so contrary to what the other docs told us, i still need scans. i was a little bit upset, but still understanding, it is so much better to be safe than sorry.
2. to figure out the blood disorder, i got lots of blood drawn today, she told me i would get 5 vials out and i was like "thats not bad" ... she lied to me! haha they took 9....and after that i was grumpy and hungry and needed a nap!
3. in reguards to my headaches im gunna see a neurologist at the CCF and hopefully change my migraine medicine. if you know me, you know i've put on weight over the years, and its basically from the medicine. so hopefully i can get off of it and lose about 15 pounds :)
After my appt at the CCF me mom and dad went to Cheesecake Factory for lunch! it was delicious! we dont go to restaurants like that often together...especially when we all should be at work or school ;) hahaha! i got a strawberry lemonade & the baja chicken tacos with mexican rice and black beans! and the tacos came in corn tortillas so they were completely gluten free! it was basically delicious! we all split a slice of kaluha coffee cheesecake...i ate the top off cause there was no crust haha :) lunch was the highlight of today...
So thats where we are headed as of today in reguard to me.
But today was not all about me. Today i got some horrible news, that seemed to come whirling in all within about an hour of one another like rapid fire.
Our family friend was diagnosed with Leukemia today. Her husband is a teacher at my dad's school & she is one amazing lady. She is probably the healthiest woman i have ever met, and i am still left completely shocked and heart broken. They have 3 little girls. if you could lift them up in prayer that would be wonderful. Her name is Alli
My aunt texted my mom today to let us know that my her friend passed we do not know any details, but its not just one of my aunt's friend. this woman is a friend to so many of my cousins, a few of my aunts. I do not know any details besides that her name was Amanda...if you could lift her family up in prayer tonight and in the days to come that would be amazing also.
I apologize for this being such a sad post. there aren't many happy words to describe today.