May update

It has been about 10 months since I’ve updated this blog. Im sorry I am really bad at remembering to do this!

Because my cancer is high grade, and has a high rate of recurrence, I have to go to St.Jude every 8 weeks to get brain and spine MRI’s. Monday, May 8th I had Brain and Spine MRI’s , and it showed the lesion that we found 8 weeks before has grown quickly, which has caused swelling in my brain. What i thought was gonna be just 2 days of scans/appointments turned into a whole week and a half of more Iv’s, more scans (MET/PET), and more appointments. As of right now, I am not symptomatic, so I will not be having surgery right away.  I am having more scans in 8 weeks. The time period in between is watching and waiting, but mostly praying . At the end of my crazy week, I Graduated May 12 from St. Jude, and May 18 from Houston High school. I am very blessed to say that. Four years ago, I was told it would be a Miracle if I made it to my high school graduation. I am very blessed to still be here today, celebrating my Graduation(s). I also want to say thank you so much to everyone who has kept me in their prayers, please keep them coming!!

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July update

I figured now would be a good time to put an update on my blog, considering the last blog I wrote was about scanxiety the night before my scans on May 2, 2016. Those MRI’s showed a new lesion/spot on my brain, which is never good news. The spot that lit up on my brain was too small to do surgery on or tell exactly what it was, so my doctors wanted to wait 8 weeks to give this lesion/spot time grow and then scan again; on the Brain and Spine followed by a Spinal Tap. Of course those 8 weeks there was a lot on my mind not knowing what is growing inside my brain, and whether or not it is growing. I had a lot of questions I wanted to ask but knew there was no answer to just yet: Is my cancer still spreading? How much is it growing? Will I need more treatment? Is it even operable? Will I have to go through everything I just did all over again?           and thats when I just put all of my trust into God’s plan for me. I have to remind myself a lot to “be still and know” (psalm 46:10)

And here we are 8 weeks later. July 5th ,6th and 7th.

July 5, 2016   I had my Brain MRI, which I did not have to get sedated for because it is only an hour long and I actually watched a movie during this one.

July 6, 2016  I had my Spine MRI around 1:00 p.m. I am not a fan of Spine MRI’s because they are longer than my brain MRI’s usually are and being as claustrophobic as I am, I do not enjoy being all the way inside a machine that is like 5 inches away from my face/body. Unfortunately I had to suck this one up though and go through the whole thing without being sedated or taking any medications before. After my MRI’s I got sedated for my spinal tap, which they did not get on the first try so they had to do 2 spinal taps. When I recovered from sedation it was 6:00 p.m. I had been fasting since midnight the night before. I wasn’t that hungry because of the pain I was in. The rest of the day I was really loopy from sedation and pain meds.

July 7, 2016 The next morning I woke up really sore and couldn’t walk without being in a lot of pain. I had to go back to the hospital to get morphine drip, and my monthly benadryl/antibiotic drip through IV. I spent the rest of the day in bed pretty sick.

I got good and bad news from my MRIs. The good news was my spine MRI and spinal tap showed no cancer cells, the bad news is the lesion/spot on my brain has grown 3MM. It is still too small to do surgery. My next set of scans is in 6 weeks, and then we will go from there. This week was a very long one. So thank you everyone who has been praying for me and I will try my best to keep updating!!! ❤

 

 

 

 

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scanxiety

scanx·i·e·ty (n.)                                                                                        the feeling of anxiousness before an MRI. The all-nighters you pull because you can’t sleep from stressing over what the results could be. The anticipation while spending, what feels like all day, in the waiting room.

Im writing this because scanxiety is hitting me pretty hard tonight- I have scans tomorrow May 2,2016. I haven’t updated my blog in a while, so I thought I might as well do that now since I can’t fall asleep. The last time I updated on here about myself, I finished radiation and did not proceed to do chemo because of the pathology reports showing a high grade glioma/anaplastic ependymoma grade 3. Since then I have slowly been trying to get my life back on track. I started going back to school (half-days for right now). And I am getting less time in the hospital and more time living my life to the fullest and trying to cross things off of my bucket list. I’m still getting sick from the side effects of my radiation. Lately I’ve been having headaches, nausea, and my short term memory is not the best, I feel like these past few weeks, all of these have been worse than they usually are- which is why I think I’m more anxious about my MRI results tomorrow. With my diagnosis, I have to get MRI’s every 2 months at St.Jude, and a stable scan is a miracle. I don’t even want to think/talk about what would happen next if the scan is not what we want. So I just pray because I know God’s got me. Please pray for great results and another 2 months to live and to breathe.

Thank you so much to everyone who supports me!!!

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Hannah

you never know when your last goodbye might be.

Yesterday January 5, 2016 one of my St. Jude friends Hannah Tate earned her angel wings. Cancer just took over her body. Just a couple weeks ago I saw Hannah at St.Jude and she was so happy because she was getting to go home. I hugged her goodbye- I would’ve never thought that would be the last time I’d see her. Hannah had to take on a tough battle, but with her faith cancer had nothing on her. I know Hannah is now cancer free in heaven, with many other St.Jude angels. I will miss you so much Hannah but we made memories together. Like when we got makeovers at St.Jude on my birthday, and signed autographs for the memphis grizzlies, all the selfies we took on your phone, talking about how much we both hate how radiation tastes  and it doesn’t make sense to anyone else…And I will hold on to those memories forever. I am so proud to have known you Hannah, I know you’re gonna be watching over us as we fight our battles.

 

tonight at St.Jude:

his will be done

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BYE 2015!

I have never been so happy to say goodbye to this year. 2015 has been so shitty to me. Starting with a couple of my friends from St.Jude passing away, along with my Grandfather from cancer. My mom got diagnosed with breast cancer and I had to play her roll in the family while watching her fight a really tough fight, and going through a breakup all at the same time. The cherry on top: I got re-diagnosed with 2 very aggressive brain cancers, brain surgery, and a long rough treatment causing me to miss my junior year of high school. BUT ITS OKAY i’m putting those ugly things behind me and I will always cherish the great moments of this year- like winning princess on homecoming court, becoming good friends with my favorite NBA players (and Justin Timberlake), Going to the CMA’s as Kelsea Ballerini’s date, spending time in NYC and being a guest on the Today show, Having a WHOLE DAY dedicated to me, and also getting a brand new car. (thanks goodmegan)
BYE 2015
Im looking forward to a new, great year. HELLO 2016

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“I’ve still got a lot of fight left in me”

So today was a tough one, I walked out of St.Jude with about 10 sheets of pathology reports with nothing but bad news. I was actually shared this news a couple weeks ago, but today it was “official”, and now I’m ready to share. Since my case is so rare, so many doctors are looking at my cancer over and over again trying to figure it out. Looking back on my new cancer, what they thought to be as PNET…turns out to be a high grade glioma, which if you know anything about brain tumors/brain cancers, you know that glioma is the worst of the worst and such a nasty aggressive cancer. The first thing I thought when I heard this news is that two people who I was very close with lost their lives due to their cancer morphing into a glioma. With that being said, the survival rates are very very low. My original treatment plan was full cranium/spinal radiation to treat my anaplastic ependymoma grade 3, then give my body a couple weeks of rest and treat the PNET with 4 rounds of intense chemo. My doctors have decided to stop all treatments for now because of my new diagnosis, chemo would only hurt me right now. I was told this cancer WILL come back, whether its in 2 months or 2 years.. nobody knows. But when it does come back I will have brain surgery for the 3rd time (if it’s in an operable location). Then God only knows what will happen from there. But I will be having brain and spine MRI’s every 2 months until the bastard returns. The only medicine that can help me right now is prayer. My neurologist shared this bible verse with me a couple months ago and it really gives me hope-   Philippians 1:6   6 being confident of this, that he who began a good work in you will carry it on to completion until the day of Christ Jesus.”  I know that God is not done with me, statistics might be done with me.. but God is not. I have a future and God has planned out my future.. I am not ready to leave this earth… screw you cancer. Thank you everyone so much who has supported me and kept me in their thoughts and prayers!! So much love!

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THE CMA’S!!!!!!

Let me tell you about the best night of my life!! So for Kelsea Ballerini’s first time attending the CMA’s as an artist, she invited ME to be her date!! The day before the CMA’s, I was reunited with Kelsea and we got to spend some time with each other and her crew. We picked out my dress with the help of Krista Roser, Kelsea’s stylist. The morning of the CMA’s, I got all glammed up by kelsea’s makeup artist Meegen Pearson. Once Kelsea and I were all ready, we walked the red carpet, which was sooooo much fun, like every girls dream. We got interviewed so many times and here are links to some of them: wsmvnashville , people.com

I was also reunited with Justin Timberlake and we got to meet his beautiful wife Jessica Biel!!! Me and JT singing together

I got the chance to meet many country artists, who were so down to earth and really nice people, I cant even thank Kelsea enough for letting me be a part of this huge night for her, and walking the red carpet, fan-girling, dancing, and crying with her. Now, when we had to say goodbye we both were balling, we are contagious criers so the tears kept coming. Kelsea is a TRUE friend and I love her so much. She knows that I am about to go through so much so she wanted me to have fun before I do that.

There are haters out there and people who call me “lucky” for all of this, or maybe that I don’t deserve all this attention….but you don’t see me when I’m sick, throwing up, too weak to walk, can’t eat, can’t sleep. Just know that when you’re complaining about your homework or how sore you are from practice.. there are people who wish they could have those small problems. I would trade all this attention that you’re so “jealous” of just to be cancer-free and live a normal life. Starting December I will be in the hospital for 4 months straight, that includes Christmas and New Years. So please think again before you say things.

BUT the positive comments outweigh the negative ones, so thank you to the people who are geniunley happy for me and praying for me.

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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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