Just mix ’em in my drink

I’m back!! This is a very overdue update post since my last one was in 2017 and lots and lottts has happened in my life since then. So 5,6,7,8 …..

Let me catch you up (2017-2019)

In my last update, I talked about the lesion in my brain that we were watching with scans every 8 weeks. That same lesion is still in my brain but has remained stable with minimal growth, which is great news! Early August 2018 my brain MRI showed that there is a cyst in the cavity of my brain where my last two tumors were. While the doctors told me it was nothing to worry about and they were sure it was benign, I still felt uneasy about having another mass in my brain, and this will come back up later on in this post. Right after my scans my family, my friend Savannah and I went to Puerto Rico for vacation. I didn’t tell anyone how I felt about that cyst in my brain because the doctors told me not to worry about it. While nobody knew my concerns God sure did. God has sent angels to the earth to tell me to stay strong and have courage. I wrote about the specific angel God sent to Puerto Rico to remind me every thing will be okay. You can read the Facebook post about my encounter with the angel here. Shortly after that trip God sent another angel to me in a place you would never imagine – Walmart in Oxford Mississippi. I was walking out of one of the aisles and almost ran into this lady and I said “Oh my Gosh I’m so sorry” then I was trying to get out of her way, when she looks at me in the eyes (and I’m thinking oh no she’s mad) then she firmly said “God just told me to tell you to be strong and have courage.” And I felt that, I could feel God speaking to me so I just hugged her and started to cry. Then my roommate comes out of a different aisle looking at me hugging some random person in Walmart ūüėā Once the woman left she turned the corner and we never saw her.

“Have I not commanded you? Be strong and courageous. Do not be afraid; do not be discouraged,for the Lord your God will be with you wherever you go.‚ÄĚ

JOSHUA 1:9

One of a Kind

Since St. Jude is a research Hospital, they have been studying my 2 brain tumors since 2013-2015. This led the researchers at St. Jude and scientist across the world to discover 5 new types of brain cancer. I was originally diagnosed with Anaplastic ependymoma grade 3 brain cancer, that is also the cancer I was treated for. But one of the 5 cancers that researchers discovered is actually my cancer. It is so new when they discovered it in 2019 there was no name, treatment, or cure for the cancer. I was 1 out of 1 patient to have this cancer at St. Jude, let alone 1 out of the very few around the WORLD. Today I believe I am 1 out of 2 patients at St. Jude to have this specific cancer. They are able to diagnose patients with this cancer from the study of my brain tumors the past 8 years. They have established my specific cancer as HGNET-MN1 which means High-grade neuroepithelial tumor with MN1 alteration.

2020 New Year, new seizure?

Now on this post we have made it to 2020. Lots of unexpected things happened in everyone’s life in 2020. The chaos of my 2020 started on January 6th. Remember that cyst in my brain my doctors told me not to worry about? Don’t forget it. January 6th I was sitting in the living room with my mom watching Ellen on TV. Dua Lipa was on the show and her song “New Rules” was playing. My mom was trying to sing the song when it stopped playing and she was SO off on the lyrics so I start to correct her by saying the correct lyrics. “No mom, it goes, One: don’t pick up the phone you know he’s only calling when he’s drunk and alone.” At least that what I was trying to say. But when I spoke I couldn’t get those words out of my mouth, I was trying to speak and my brain started flipping words and made me speak gibberish. I had no clue what was going on, and my mom didn’t either as she thought I was trying to correct her on the lyrics when I couldn’t even say them myself. And then we both realized it was probably a focal seizure. I thought it was over so I went upstairs and texted Parker (my sweet boyfriend). In my mind, I texted him something about me thinking I just had a focal seizure. But that is not even near what I texted him. I don’t remember what the actual text was but it didn’t make any sense to the point where he was concerned that something was happening to me. Everything that happened after that is a blur to me. Parker came over, and I was on the couch crying because I was so confused and had no idea what was going on. My mom asked if I wanted gatorade and I had absolutely no idea what gatorade was. They brought me gatorade and I saw it, but still didn’t know what it was. Mom asked me what my dogs names were.. I had no clue. My mom called St. Jude and they told her to take me to Le Bonheur ER. At this point, it is getting late at night and they have me on fluids and did some scans on my brain. I do not remember any of this. They told my mom and Parker that they thought it was a mini stroke. Not only that, they said they saw a bright spot in my brain and that they sent the scans to St. Jude so my doctors can review them. Because my regular scans were on February 1st, my doctors at St. Jude wanted to wait to rescan until then. As you can imagine I’m thinking the bright spot the found in my brain had to be my cancer and that this would be my 2nd relapse. It killed me to have to wait so long to find out.

February 1, 2020 After having my brain MRI at St. Jude, my doctors showed me that the lesion in my brain remained stable and the white spot that the ER doctors at Le Bonheur were talking about was scar tissue around that cyst. That damn cyst. What the ER thought was a mini stroke was actually a seizure caused by the cyst growing and pushing on the scar tissue. Because I am on the highest dosage of Keppra XR (4,000 mg a day), my neurologist decided to add a new seizure medication, Lamotrigine. Besides a couple more seizure similar to the one on January 6, this medication has been working (knocking on wood, crossing my fingers, praying.)

Going into the new year 2021

Over winter break I had a few appointments at St. Jude with neurology. My neurologist is acknowledging the fact that I am getting older and that in the future I will want to get married, and knowing that I had my eggs retrieved before treatment in 2015, I want to have kids and a family someday. Considering I am on so many different medications, I am going to have to get off of the ones that are unsafe to take during pregnancy (again, distant future haha.) Getting off these medications will be a long process, so my Neurologist decided to slowly start the process now. This will be a tough process because I have been on the majority of these meds for almost 8 years now. Our first step is raising the dose of Lamotrigine (which is safe to take during pregnancy) and lowering the dose of Keppra, which I have been on for 8 years. This first step should be done in May and I will be completely off of Keppra and on a higher dose of Lamotrigine. THENNNN (stay with me) A different person who is not my primary doctor and does not have control over prescribing my medication wanted to take me off Erythromycin, which I have been taking since 2015 to repair my stomach and esophagus from being burned from radiation. This person decided with out talking about it to me to cut me off cold turkey and said I needed to start going to an adult GI. So I did and the GI doctor said that Erythromycin is not a medicine you can be taken off cold turkey, especially because I have been on it for 6 years. So I am now on a schedule of getting off Erythromycin too and if that is problematic then I will have to get a scope to see if my stomach is still damaged from radiation. So to sum it up, I am going up on one medicine and down on 2 different types of medicine. My schedule for this process is overwhelming and filling my pill box feels like a full time job and I should be paid for having to go through this much anxiety.ūü§£ So far my side effects from slowly getting of Erythromycin have been really bad stomach pain and nausea (and once I’m out of quarantine I will make an appointment with my GI).

When I say quarantine, yes I have Covid.

Unfortunately Parkers family got Covid and once he tested negative, he quarantined at my house and we both ended up getting it. My symptoms have been bouncing around but I am doing a lot better today. My spring semester classes started today and I am having to stay at home for it since I am still quarantined. Thank you for everyone who has been following my story and praying and supporting me through all of this. And if you’ve made it this far in this lengthy post, thank you for reading ūüôā I will try to do better about posting updates!

The reference to the title of this post is from Miranda Lambert’s song “Bluebird.” The real lyrics are “And if love keeps giving me lemons I’ll just mix ’em in my drink.” Except I made my own version of those lyrics to “And if life keeps giving me lemons I’ll just mix ’em in my drink.” (My love life is great I love Parker and God couldn’t have blessed me more when he put him in my life.) But from reading this post, and all the other posts on this blog, you know that life has thrown me quite a few lemons. And on that note, I’ll take a lemon drop martini – my favorite, honestly.

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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¬†Lanc√īme 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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