done with radiation…FOREVER!!

I am so sorry this is a little late but I wanted to talk about my last day of radiation, which was Friday, October 16.  Radiation is the only treatment that has been proven to work on ependymoma. After my original diagnosis of anaplastic ependymoma grade 3 in 2013, I went through 33 rounds of focal cranium radiation. This time I did 32 rounds of FULL cranium/ FULL spinal radiation. Almost 6 and a half weeks. And let me just tell you, those six and a half weeks were not easy. A lot of people don’t know what radiation is like so i’ll kind of explain.    Every Monday through Friday I would wake up early and head to St.Jude. After checking in, I would go downstairs in the radiation center. When they call my name I go in the back and change into a hospital gown, then my Radiation Therapist would lead me into the treatment room. I lay down on the hard table, they make sure the red lazer light is lined up PERFECTLY with my 5 tiny tiny tiny tattoos. They put the tight mask on my face (pictured below), screw it to the table, and strap me down. They give me a warm blanket, play my music and leave the room to start treatment. The most important part is that I have to lay completely still. The big machine moves around my brain and I can hear a small buzz sound. The air smelt like burnt hair or burnt something. After about 20-30 minutes (somedays longer if they have to take pictures or reposition me) they come in and unscrew my mask, unstrap me, and help me out. I continue my day at St. Jude after that. The side effects hit me HARD. Focal radiation was tough, but full brain/spine radiation was way tougher on me. My first week of radiation I threw up everyday (that lasted everyday even still now) but it progressivley got worse as I got deeper into radiation. By my 3rd week i became weak, sick, tired.. lost my appetite. I have to say weeks 4-6 were the worst weeks of my life. I couldn’t walk or eat, I wasn’t in the mood to talk or even be awake. I was so sick I felt useless. I was so ready to give up..but I knew I couldn’t I had to keep pushing.. I want to BEAT this cancer. I lost at least 10 pounds just in week 5. My doctors wanted to put me impatient. But, we made a deal.. I would be on 24 Hour TPN, which is an IV bag of all the nutrients and proteins my body needs, but is not receiving. So I had to get a pic line put in- which is a line that goes through my arm in a vein straight to my heart. (yes I was awake for that and it was AWFUL). So I carry my IV bag in a backpack for 24 Hours everyday. My 2nd day of being on TPN I was a new person… I was walking, talking, smiling, even trying to eat. By my last day of radiation I felt so much better.  I was so happy to be done with radiation, but at the same time terrified. You can only be radiated 2 times in your entire life, I have used up those 2 times. And like I said radiation is the only treatment that works for ependymoma.. so it terrifies  me.. if it comes back again I can’t get treated. So thats why we PRAY this ugly ugly cancer NEVER comes back again.

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SO NOW THE FUN STUFF:

On Friday after my last radiation, I was leaving the hospital when I saw Mr.Shadyac (CEO of Alsace), he is the Nicest man in the whole world. He asked me if I would go outside and welcome Justin Timberlake, Marc Gasol, and Mike Conley with him. I was like OF COURSE!!!! I was wearing my comfortable clothes because when I got dressed for the day I knew I was going to Nap after radiation.. not prepared to meet JT!!! Its totally okay Justin was SUCH a cool guy and they made my day/year/life. Thank you Mr.Shadyac!!! THEN on saturday I got some EXCITING news from Kelsea Ballerini, watch this video of her asking me to be her date at the CMA’s! https://www.youtube.com/watch?v=F8spKF3Twc4&feature=youtu.be

As of for how I am feeling and for whats going on right now: I am now only on TPN for 12 hours a day, I am feeling better but these radiation side effects will stick with me for a while and PEAK in 6-8 weeks. I have 4-6 weeks off until I start chemo.. and in that break I will be going to the CMA’s November 4 with Kelsea!! And I am going to try to travel and do everything I want to do before going through 4 months of hell.    I just want to remind people, because many tend to forget.. yes I love meeting all these famous people and getting all of these big opportunities, but I would trade everything just to be healthy and normal like you.

But thank you for the Love and Support from many people.. it’s what keeps me going!!

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IT’S BRITNEY B!TCH

i haven’t posted a blog since before my surgery so i think its time for an update on here. Im so sorry its really long!!!

with cranial spinal radiation comes lots and lots of terrible side effects. Today was my 15th round (almost half way through) and so far i have already lost 7 pounds since i started treatment. I haven’t had a real appetite in a while. Another side effect is nausea- which is the one I’m experiencing most. Its terrible, I’m on 3 different nausea meds for it, which sometimes they work some times they don’t – 90% of the time you will see me with a green barf bag in my hand lol. i have been getting extremely sick and weak, which i really hate. Its so hard going from being an active dancer, to not even being able to stand up long enough to brush my teeth some days. But it all comes in waves- one day i won’t be able to walk or eat or talk much, while the next day i can feel fine and have enough energy to do whatever! The nerves in my brain that control my scents and taste are being effected by radiation, so everything to me tastes and smells like radiation- gross!!

Now of course the side effect of my radiation that i was dreading the most – hair loss

Last wednesday was my 10th round of radiation – the middle of week three, when my doctor warned me my hair should be falling out. Wednesday afternoon i got out of the shower and brushed my hair and noticed my hair falling out. Of course i had a meltdown. Its easy for some people to say “it’s just hair” but its hard when you’re a teenage girl. I’ve always been attached to my hair- i would freak out if my hair dresser would cut off an inch too short. And i always had fun dying my hair cool colors… it started in 5th grade when i dyed my hair pink if anyone remembers that haha.   On Saturday the majority of my hair was falling out and it was just torture to watch. Sunday morning i woke up with about 2 chunks of hair left and i decided to pull a Britney Spears 2007 and shave my head. That was very hard for me to do but thats one thing i got over with and I’m not stressing over anymore. One of these pictures shows my scar now everyone can see it, but a scar is a tattoo with a better story right??

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OKAY. now my birthday!!! My birthday was this Tuesday, September 22. Yes i did have to spend a lot of it at St.Jude but Lancôme was there and gave me a makeover, which was really fun.  In the afternoon my team surprised me. They were all wearing hats, headbands, or wigs to support my new hair style. I am so blessed to be on a team with 26 girls who i can call my best friends they have been extremely supportive with everything I’m going through.     Of course i had to end my birthday with a bang by throwing up blood… but its totally okay i  had the best birthday. Thank you everyone so much for all my birthday wishes!!

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This Friday,  September 25 Houston High school is going gold for childhood cancer awareness month. and we are raising money for St.Jude. If you’re reading this, come!!! I’m really looking forward to it.

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round 2

I have not updated this in a while, but i think its time to now!

This past Monday, July 27th I had my brain MRI (just like I do every 3 months). Except this one was different, not the news I wanted to hear. The MRI showed I have a new tumor in a different spot from my other one. Unfortunately, reoccurrence in my cancer is common, and I’m right at the time period (2 and a half years after original diagnosis) when this happens. I had a spine MRI on Wednesday and a spinal tap today – and praise God there was no sign of any tumor cells in my spine. I am going to have brain surgery to remove the tumor next tuesday, August 4th. Then after recovery, I will need to get full brain and spine radiation. Since this is all happening when school is starting, I am going to take my first semester of my Junior year at St.Jude school. We rented an apartment downtown so it will be easier than driving 45 minutes there and back everyday for a couple months (something we learned last time). I never knew I would have to go through all of this again, it was tough enough the first time- now this treatment is going to be harsher than my last (yes ladies i will lose all my hair). This sucks, honestly it really sucks. Everything about cancer sucks. Success is not guaranteed, but one thing I know that is guaranteed, is that every single one of my doctors are trying their very best to help me survive and hopefully one day say I beat this. I am blessed to be a patient at the best children’s research hospital in the world. I know I have the best radiologist, neurosurgeons, and Doctors on my team, and I am confident that I can get through this. I know God has a plan for me (my favorite bible verse Jeremiah 29:11). And even though this will be very tough I am going to try my best to stay strong and positive. Thank you so much for all of the support and prayers I have already gotten!

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more lemons???

When life gives you lemons you make lemonade right?? My family sure as hell is making a lot of lemonade…

2 weeks ago both of my parents drove to south carolina to go see my Grandad, who has been fighting brain cancer for 5 years. Grandad and I have always bonded, but these past 2 years we have gotten a lot closer. After I got diagnosed with brain cancer I knew I had someone to look up too..someone who is going through the same thing I am. (completely different types of cancer, but its still in the same place: brain). Unfortunately on March 6, 2015 cancer took over and he past away. One of the last times i saw him, he let me drive his convertible and we were listening to the song “only the good die young” which is so true he was too young to die. But knowing that he is no longer in pain and he is up there in heaven and with some of my friends and family makes me feel better. Grandad I love you so much and you will forever be missed.

When my parents were visiting in SC, ( on March 3,2015) my mom got the call that she has stage 2-3 breast cancer. My mom has been So strong watching me go through this so-called “cancer journey” and holding my hand the whole way through. But now its my turn to be strong for her. It really sucks knowing what she is about to go through..but my mom is going to be okay – she always is she is so strong and  I could not ask for a better Mom/bestfriend in my life. You’re going to kick cancers ass mom, i love you.

so yes all of that happened in one week. Its a lot to digest but prayers will help 🙂

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a year ago today

One year ago today (December 5th) I had a brain MRI that showed my cancer has spread in many different spots, one of the tumors being inoperable. We then had to schedule my second brain surgery, in-patient chemotherapy, and more radiation. The chances of me being here today were almost slim to none considering my cancer is so aggressive and quick.

About a week before my second surgery, I had another brain/spinal MRI… the inoperable tumor was not there and some of the spots were gone. Even all my doctors were shocked at how impossible that was. The only word for this is a miracle and it was very hard for me to understand that. But I am seriously beyond blessed to be here today continuing to fight cancer. I would not be able to do it without all of my amazing doctors at St. Jude and everyone who supports me.

“Nothing you have is because of luck or chance. It’s all due to God’s grace and favor.”

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My Story

As you can tell by the name of this blog i am a dancer… with cancer. and here is my story:

In January 2013 i was in 8th grade, captain of my dance team, and getting ready to compete at Nationals with my dance team. Almost everyday i would have a moment, only a couple seconds long, that i knew wasn’t right. I could see and hear everyone around me, i could talk too, but it didn’t feel right and I would just zone out for a couple of seconds until that feeling was over. It didn’t occur to me that this had anything to do with my health, until it happened during a pep-rally and made me forget my dance routine that i have known for a couple of months. Knowing something wasn’t right, my mom took me to the pediatrician just to see what was up. The nurse told me it could be anxiety, migraines, or seizure activity. She wasn’t too concerned but she scheduled an EEG on January 16. The EEG showed seizure activity in my brain, which I was not expecting at all. January 22 i had an MRI on my brain early in the morning. While i was on my way back to school the doctor called my parents telling them there was a brain tumor in my right  front temporal lobe. I never knew how much my life would change that day. February 3 I competed with my team and won first place in Hip Hop at nationals, which was a dream come true. February 14 (Valentines Day) I had my brain surgery. That day, my doctors discovered i have an aggressive, highly malignant form of brain cancer. My official diagnosis is Grade 3 Anaplastic Ependymoma. Once i was recovered from surgery, i became a patient at St. Jude. March- April 2013 i received 33 rounds of radiation treatment. I lost half of my hair on the right side of my head from radiation, but that was the least of my worries. In just 3 months my definition of “normal” changed drastically. After my 33 rounds, i returned to school and dance trying to work with my cancer and my normal life at the same time. I get an MRI every 3 months to see what my cancer is doing. On December 5th, 2013 ( almost a year after my first seizures) I had an MRI that showed my cancer is returned in many areas  and i will need a second brain surgery, in-patient chemotherapy at St. jude, and more radiation in april. A week before my scheduled 2nd surgery i had another brain/spinal MRI, Some of the spots were gone. It seemed impossible, yes i still have the cancer in my right font temporal lobe, but the other areas were gone. Now i still go every 3 month for MRI’s to see if my cancer has spread. I am back on track now, I still dance and i still go to school, but it takes a lot more effort than other people. People tell say to me “you don’t look like you have cancer”. Is it because i have hair? there is much more to cancer than just baldness. I struggle with my disease everyday- taking more pills than any teenager should , losing my short term memory , constantly being tired, feeling sick at least once a day, living my life from scan-to-scan. But people don’t see that when they look at me.  With Grade 3 Anaplastic Ependymoma there is no remission or cure, hopefully one day someone will find one, but today there isn’t. Cancer sucks, but i’ve just learned to live with it and enjoy the good things that i do have. Thank you so much for everyones continuous thoughts and prayers—

I was a little drugged up from anesthesia lol

I was a little drugged up from anesthesia lol

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