Wednesday, August 22, 2012

Settling in

Warning: Long post!!! I'm playing catch up

I think I've gotten the hang of it! I feel so comfortable and good here. Most everything works out in our benefit. I finally know my way around. The food is BEYOND amazing, the doctors are too. (I've met 1 or 2 dull ones) But everyone here is so happy. All in sad situations, but it's hard to look around and feel sorry for myself, when there's babies with scars, kids without legs, and a limited supply of hair. Most of them with bigger smiles than me. My sleeping schedule is a little off, I get temper tantrums from 3-4 AM each day, followed by hunger pains.

So I'm just going to break it out fast, like ripping off a band aid, because it's hard to tell each individual person separately.

This I found out yesterday is a very rare type of cancer. Only around 200 kids are diagnosed with it each year in the US.  There's been a few patients older than me (very few). But it's very life threatening (not very many survive) and there's really bad statistics. Fortunately, I believe I am my own statistic. I know God has a plan for me, and whatever that it is, is best. But I am going to keep living my life, after all, I have a pretty big bucket list!


Now for the happier news, we got here Sunday, and took a shuttle from the airport, to the Grizzly House. After registering and checking in, I got so tired and hungry, so Diane and I ordered pizza...


and fell asleep. Naturally, I woke up around 3:30 AM the next day, probably threw a fit about something ridiculous I don't remember, then went to the hospital! I had an IV today, for my MRI, normally I'm petrified of needles, but this one wasn't bad!


After leaving it in from 7:30 AM to 5:00 PM, we went back to the room and fell asleep.
Followed by a day full of more doctors appointments, we had really good food (as always)
And today we cut down my steroid! Not very much, but I'm being tapered off of it, which will be good, especially with this crazy appetite of mine!


Today I woke up at 4, with some anger! Fortunately, I didn't act on it! (food usually calms my nerves) My real day started at 8:30, with a CT scan, getting my mask fitted for radiation, followed by an MRI. 


We then had lunch, and then more doctors appointments. I then had speech (everything looked good!) they are just worried because I've lost my gag reflex's, and same with the sensitivity in my eyes. But these are all things, they've told me, radiation will improve.

I was supposed to start school yesterday, but somehow it keeps mysteriously being taken off of my schedule. I'm going to have to look into this.

Ironically, my most depressing moment today was with the therapist, whose there to make me feel good? I fit the "Make A Wish" profile, which I once thought would be awesome, but is starting to seem more of a final wish, at least in the way she explained it to me.

Any suggestions?

Today, I was accepted into a study, which has only positive aspects, besides the fasting and the IV from 7 AM-11 AM tomorrow morning. It's really cool, they put a protein in my body that tracks my bad cells, takes pictures, and can hopefully provide them with more information. Granted, it is a phase one study, but if it could help me, and more to come after me, no harm done.

And I got my legacy beads, so everything I do, I remember by a bead I've been given, there's already a lot.


At 5, I'm getting together with other teenagers in the area (religiously) so we'll see how that goes! I'm nervous because I'm so used to my friends and family, but maybe it's time to branch out!

Last but not least, thank you guys so much for the support, I want you to know I read each comment, (so even though I'm not the best at responding, know I care and appreciate everything so much!)

I couldn't get through this, without supporters like you guys. 

Love You All So Much!

Rachel


49 comments:

  1. Hi Rachel: Hang in there!!! You are in my thoughts and prayers. Love, Jackie Jagerson

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  2. WAAHHHH... bawling here... bawling, because you are AMAZING!!! I think even I underestimated how much of a beacon you are to the world!! You shine so bright, that its blinding. I love you so much Rachel, and I am so glad that you have time to let us know all about your journey! The bead journey is a wonderful idea, and you get to meet some other teens, AWESOME! They are going to LOVE you!!!! Next time you are having a 3 am fit, you can text me and I'll have a fit with you! ;)
    love you,
    Penny

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  3. Rachel, the Knowles family is reading your blog and praying for you daily!! We love you and your family!

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  4. Rachel... Thank u for making your blog . It reminded me that with the lord all things are easier and you are amazing! Thanks for sharing your faith . Hang in there ! We r praying for u . Tell your mom I love her . Amy bliss ( bishop)

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  5. You ARE your own statistic. No one is YOUER than YOU!! Every bead you put on that strand represents some real effort and sacrifice on your part. I'm sure there will be days you just don't want one more needle poke because it just doesn't seem worth it. I'm proud of you for facing the facts and MOVING FORWARD. I think the Doctors at St. Jude's should prepare to be amazed.

    Hmmm - with the Make a Wish foundation can you wish for more wishes???? No... How about a 14 day cruise with your entire extended family, ward, and high school?? When I asked my family what you should wish for, Adam said, "One time I threw up green lemonade." So... there you go.

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  6. Mindy sent me from cutegirlshairstyles!!! You really are amazing and I'm about to go to bed so I'm about to pray for you!!!!! You really are amazing and you have an amazing mindset! I hope all goes well and I'll keep following your blog! :) #PrayersForRachel

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  7. Hi! I learned of you from cutegirlshairstyles.com! I just wanted to let you know I'll be praying for you during this hard time of your life!

    By the way, have you heard of Gerson Therapy? It's basically a diet change that heals cancer. You eat all organic, which is expensive, but certainly not as expensive as radiation/chemotherapy! Anyway, look into it. Let me know if you decide to give it a try.

    Blessings,
    Jaime Lynn

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  8. You are awesome Rachel. My girls are praying for you and love you very much.
    Hale Family

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  9. Praying for you!!
    Nicole
    Dayton, OH

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  10. You are indeed your own statistic...May you be the miracle! We hope this trial yields some amazing results. Our thoughts and prayers are with you and your family.
    Love, The Huish's (friends of the awesome Hale family)

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  11. You don't know me at all,i heard about your blg from a different blog i read. Your attitude about this trial in your life is such a good example to me...you are so very positive and happy (and about the steriods-who doesn't need a good temper tantrum about something every once in awhile right?!) I am praying for you and plan on fasting for you later this week. Keep on keeping' on :). Jessica in California

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  12. You are one courageous young lady, and I will remember you in my prayers from this day forward.

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  13. The Hoyt-Murphy family from phx are praying for you! Along with our prayer group. You WILL come out of this, stronger then ever.
    Heather Murphy

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  14. I love my rachel!!!! I"m writing you and hope you get my letter soon :) I love you and I know you can make it! Don't forget your in my prayers and Everyone else's too!

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  15. I will love following your story here on the blog! What a great idea! I am so glad you are meeting with other kids out there. Let me know if you need any visitors, I get to fly free with my husbands job and need and excuse to get to Tennessee :)

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  16. I think you should give your tumor a name. I think it's a he. Just don't give it the name of someone you care about because, well, you're planning on killing the tumor. And that might make the real guy feel bad.

    As for how rare the cancer is, that is dwarfed only by how rare you are.

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  17. You sound like a pretty amazing young lady. You have the fighting spirit in you. You remind me of my best friend from high school. She fought a great battle to colon cancer but lost. But her fighting spirit helped us all understand that God has a plan for everyone. Tho we may not understand it and why it is our path we have to embrace it and give it our all. I will keep you in my thoughts and prayers. Kepp up the great fight.

    Shannon

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  18. I have come here by way of Mindy at cutegirlhairstyles...

    It is interesting how quickly our hearts can be touched by a stranger. You have touched mine with your brave, positive attitude. You are in my prayers. The Lord is mindful of you and He loves you very much!

    Sariah
    Vancouver, WA

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  19. Love you Rachel. Tell your mom I say "hi." I'm praying for you!

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  20. I don't even know you, but read one post and I already love your attitude! Thank you for having a positive outlook and being so strong! No matter what happens, you will have won this battle because you're staying true to who you are, even while faced with a huge trial! Amazing!

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  21. Thinking of you and praying too! Have an awesome day tomorrow!

    Stephanie in Idaho

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  22. Rachel,
    We love you and wish you the very best. You are in our thoughts and prayers. Love you! and sending lots of hugs!
    Love, The Benson Family (Carson, Jessica, Madi and Olivia)

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  23. Thank you so much, you beautiful girl, for keeping us informed through your blog. I admire your courage and attitude. A positive attitude is really hard when you are going through something as difficult as you are. But keeping your chin up and remaining your "own statistic" is a fantastic way to look at this. We love you! Hugs and Prayers!
    Jake and Vickie

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  24. Hi Rachel, I am Lauren's friend Rachael (from photography classes at UVU) I believe we have met just once but I have seen so many awesome pictures of you, so I kinda feel like i know you a teeny bit. I just want you to know I am keeping you in my prayers and I am grateful for the words you write down. They will be a great thing to look back on one day and I think its great that you write down all your emotions. Hope you have a good day tomorrow and I will be keeping up with your blog!

    Rachael xoxo

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  25. Hi Rachel! I'm a follower of Mindy, and I just had to say hello to a really awesome fighter. Keep on being strong, we will always be praying for you. Hugs and kisses,
    Ava from the Philippines!

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  26. Hi Rachel, I heard of you through Mindy's website and I wanted to let you know that I will be praying for you and your family. God Bless you all and keep that positive attitude!

    Mari

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  27. Prayers from Iowa keep your head up and remember God is good

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  28. Thinking of you and praying for you.

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  29. Rachel: Thanks for keeping us informed of what's going on. We're praying for you and are sorry that you have to go through this.

    Tana and Sophia (Germany. We used to be in your ward)

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  30. Rachel,
    Thank you. I needed a reminder of hope and miracles and perspective. You are beautiful, inside and out.
    Love and prayers,
    Shannon swain

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  31. Hello Rachel, I don't know you; I came here bthrough Mindy's cte girls' hairstyles. Plesae know that you'll be in my prayers (all the way from Canada).
    Patricia

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  32. Hi Rachel! Wendy Arnoldsen here. Amber and Emily send there best, and Preston says he keeps thinking of you running track. Both Emily and Preton were working at a scout camp this summer, and felt bad they couldn't come and see you before you left, but fasted for you with us. I hope you feel how many people really care about you.
    You don't know me too well but when I was younger I was sent home from my mission termanally ill. I had both kinds of an illness called Lupus, and was in the very final stages. We were given very little hope, and masive doses of meds. esspecially prednisone( steroids) I had to laugh when you described your hunger! It is crazy isn't it!! After years, I was cured through a preisthood blessing of a disease that is incurable- my DNA changed. But told I would never have children. I have 5! When I was pregnant with my 4th (Eilee) we found a brain tumor- that is inoperable. But our ward fasted for me and though we keep an eye on it, it has never grown, and for me it works. And Eilee is now 13! I tell you these things because I beleive what you said, you are not a statistic, you have a mission and with faith and doing all you can, the Lord will make up the differance- what ever that needs to be. We beleive in miricals- I shared only two but we have seen many- some time I will tell you about Preston's fight to live at age 6. But weather your life story is long or not so long- you are amazing, and you will see the beauty in it one day. Keep laughing as much as you can, count every blessing, and trust in our very loving Heavely Father- he really love you too.

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  33. Hi Rachel, I just found your blog via Emily Tuckett Dixon's facebook post. I am inspired by your courage. I am fighting my own battle with breast cancer. Our stories are so different, yet I am taking courage from your example. Thanks for sharing. I have started posting on my own blog just yesterday, I haven't made it to the cancer portion of my life on the blog... but again you are inspiring me to get going:) I will being praying for you and your family.

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  34. Rachel - Thanks for sharing so much with us. You truly are an incredible and courageous young woman! :) We are praying for you, and I'm confident that the Lord will bless you in so many, many ways. p.s. - If I could prove I wasn't a robot and pass this word test, this would have posted sooner. I'm not very good at these. :) ha!

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  35. You're an inspiration for us all. I'm sure you know you have a lot of prayers headed your way but just know you've got one more person sending prayers. I love your positiveness through this and I love that you're spreading your experience. I wish you all the best in your journey and know that Heavenly Father is watching over you.

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  36. Came to your blog through Cute Girls Hairstyles! Your attitude and courage are amazing- You remind me of Bethany Hamilton. I've never met her either, but, like you, she seems to keep her focus on God. Keep looking up!

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  37. Rachel you are AMAZING! This is Katie Lewis. I am so impressed with you. Keep on keeping on!

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  38. You are amazing and very strong. I am friends with your cousins Kadee and Ryan. My family is praying for you and we wish you all the best. Many hugs from Florida :) Anna Hughes

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  39. Hey Rachel,
    I'm following your blog because I just don't want to miss one bit of this modern day miracle! I can hear it in your words that you really believe this trial will pass, make you stronger and more determined so... while enduring every step of this painful process, please know that I will be praying for your complete recovery, as well as the wisdom to know what to do with the rest of your(long,healthy) life! You are a terrific young woman and I like your style.

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  41. Hi Rachel!! i'm a mom here in the Philippines. i got to your blog and learned about you through Mindy of Cute Girls Hairstyle where i am one of her followers.
    You are such a brave girl! i admire you on how you face this trial in your life at such a young age. I pray that everything will go smoothly and a miracle happen to you! God bless you Rachel! you are an inspiration :)

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  42. Hi, sweet Rachel,
    Words can't express our love for you. You are constantly in our minds and hearts and always in our prayers. I'm keeping your scrapbooking chair ready for you to come home and scrap all these experiences. Hang in there and keep that wonderful attitude. Tell Diane hi from us. We had a long visit with your dad after Pack meeting night before last. Such a sweet and tender man. Our whole extended family is praying for you. We love you and wish you well.
    Steve & Nylene

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  43. Hi Rachel! I just wanted to let you know that you are truley an incredible person. You are so brave and even though I don't know you I am Soo extreamly proud of you. I have a twin and her name is Rachael too! Haha. I am also afraid of needles and I could not ever imagine what you are going through. Stay strong baby girl, you will make it, just keep fighting and never give up, even though I know you won't! <3 ~Kara~

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  44. Dear Rachel,
    Everyday when I read your blog I can't help but admire you so much! You are such a strong and mature young woman. Positivity is the way to go! We are praying for you and your family every day. You are a very special young woman! Our love and prayers are with you! Here's a big hug from me to you and your mom!

    We love you!

    Love,
    Dio and family

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  45. A special BONNE CHANCE from Qu├ębec, Canada !

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  46. Wow, Rachel you are simply amazing. As I read your blog, you inspire me to be a better person and to look at life in a more positive way.
    Rachel you are a beautiful daughter of god, please know that everyone loves you and that you're in our prayers!!

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  47. Rachel you are such a fighter! You remind me of my close friend kassidy who died of cancer in 2007 keep pushing through to the end!!! God will watch after you through your whole journey! Greetings from Virginia!

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  48. Praying for you!!!! St.jude will take good care of you Bc a friend of mine had cancer and went to st.jude and has been cancer free for several years now!!

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  49. Rebecca Valdez and family praying for u! U are a very brave young lady keep faith God will give u strength. I have a soft spot for all u children that are sick. Cancer took my daddy when I was 10 and that forever made an impact in my life. I donate to St.Jude In hope to help those find a cure. Stay strong and now that u have lots of people praying for u and ur family. GOD Bless

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