Friday, August 24, 2012

Day 5!

August 24, 2012

Okay I'm sorry I'll be catching up again today, it'll probably be a bit random, but hopefully it'll get easier as time moves on to write shorter and neater each day! (And I'm pretty horrible with computers but I'll try my best!) Today, (Day 5) I had a crazy schedule, like every other day that never seems to slow down, it was a lot smaller than every other day though. It's therapy here, radiation oncology there, a visit with my oncologists, consultation with the pharmacist and everything in between.

Today's schedule:

I thought it was interesting that on Sunday, one of the first things my first Dr. told me was "I believe it's impossible to come to St. Jude's and leave without believing in a higher power." There's a lot of comfort in that sentence to me.

And the cicadas! Holy cow, they are so noisy. Diane and I thought we were walking through a power plant. They hum so loud it was deafening!

Yesterday I woke up around 3 AM. My legs felt like they were broken. Every step I took felt like a stress fracture from the knee into the foot. It was the most excruciating pain I've ever felt. I wanted to give up/get my legs amputated, I'd do anything. But Diane, who's always there to comfort me, helped me until we were able to get my body going again, and some medication to relieve the pain. We found out another side affect to my steroid, is it could weaken my bones and if pain is an indicator, it is doing a great job! But I'm able to manage the pain and they are working on reducing my dose so all is well. Yesterday morning was the hardest time I've had yet. But spirits have been raised high since then!

I also had to fast yesterday for the research study they did. (Accidently chewed a piece of gum, whoops!) After getting an IV without any numbing, and laying on the bed around an hour, of course not eating (anyone who has ever been on steroids know how hard that is), I felt like a champion!

 During

After

I was thinking the whole time during the research scan about how much I love to make things with my hands! Especially bracelets. I'm going to look into this!

Anyways, after finishing my full day schedule, we were able to get back to the grizzly house and relax.

This morning I woke up at 2 AM. In fact, I don't think I've slept since. I took a shower, read all my emails, got caught up on everything, and by 4 was even able to accomplish core! I know it was only 100 sit ups and 150 bicycles, but it gave me a good sense of accomplishment! It did help that I wasn't even hungry or mad about anything all morning, and there was no leg pain today! It has been a great morning.

So we head out today, making the usual rounds with the doctors.  I am for sure starting radiation on Tuesday next week. They told me I'll lose my hair in 3-4 weeks, and they'll be going in with the radiation from 8 different spots. I should only lose hair in the target area of treatment which will be the lower part of the back of my head. This was a great relief to me.  Wide headbands and scarves have been recommended.   So I went the the pharmacy, picked up a boat load of medications and then headed to a group therapy, basically we made a big mirror, for the art show here. It was good to meet the other teens, who'd been there from 36 days to 6 months.  Most of them have/had Leukemia. One of them had her head shaved yesterday. They were all really pleasant teens with tender hearts. One boy is on the same steroid as me and kind of scared me the way he talked about it. But I try and look at myself as an individual and that not all statistics need apply to me.

So guess what, I skipped school, (Diane and I are rebellious sometimes;)) and we went to the farmers market they had going on today! We got tons of soap, the lady selling the soap bought me this bread I'm obsessed with. So amazing of her to do for me, what a blessing. And we were able to get cherries and peaches! I have to say what I miss most about home (besides you guys) is living on an orchard with unlimited fruit. I MISS FRUIT.

Last week it was all about Guacamole, Cheese and Salt. This week it's hummus! We got 3 containers and every time we go to dinner we get one. I eat it at 9 PM every night. And my nurse is making me some! We'll see how long this one lasts. My cravings usually last a week, so we should have gotten plenty to sustain!

Soap lady who bought me bread

Hummus

Picking out cherries and peaches

It's funny here, my 2 main doctors are a Brazilian-crazy-animated-fast about everything man and an New Zealander-gorgeous-brilliant-sophisticated woman doctor who happens to be a Korean. They're the smartest, nicest, most considerate, happy people I've ever met. They listen to everything I have to say.

Then we had lunch, at first I didn't feel that hungry, but I love the veggie pizza and wraps here! So this is trip 2! I'm losing my appetite next week anyways, so why not!


Alright, shout out to my best friend Isaiah Fiso, today he is celebrating his 18th birthday. Unfortunately I'm not there, but I've set things up through trusty people like my twin. He has a football game tonight, if you go cheer extra loud for me!


He has been such a blessing in my world. I look up to him so much, for his perspective on everything. It's hard to not be home telling him all this in person, because he's definitely one of the top people in my life, who has changed it dramatically. He's helped me through everything, and now with my cancer. He is such a strong guy, I guess an adult now. But I hope one day I can be more like him.

I'm going to a sleepover tonight with a local group of young women, jokes on them when I wake up at 2 and stay awake! Usually I just watch Diane sleep or listen to the build-a-bear recording from my family & Isaiah, we'll see what I feel up to in the morning! I'm a little bit nervous because I've only met them once before. But they are really nice people, and easy to be around.

There's so many questions everyone asks, don't get me wrong, I have no problem answering them, but it's the Dr.s questions that are starting to get a bit overwhelming. Such as, do you want a port? I found out yesterday I could get one, but as for now my decision is to just do IV's. And so many hair loss questions, no,  I do not want to lose my hair, yes I'm scared, I'll think about it when I get there! And the biggest question (from everyone): How are you?

I was just diagnosed with DPIG, no one survives this thing, well a small percent do. But I prefer to look on the bright side of things. I'm doing great, I will have bad days. But I'm also stubbornly strong, I believe in miracles, I know God knows better, I know everything happens for a reason, I know I'm here for a purpose, and in the meantime, why make things worse for myself than they have to be!? Besides, I miss everyone so much, but I sorta love it here. I'm so bad with change, I was terrified to move here, but I haven't had a regret this entire time. I know God loves me, I see it everyday through you guys, other patients and people, Dr.'s, and God himself.

Lastly, I want you to know that I read all of your comments (MULTIPLE TIMES) before my appointments, in my free time and when I wake up at 2 in morning.  Your encouraging words inspire me and help me get through the tough spots in my day.  

I love you all soooo much!  

Rach

52 comments:

  1. Rach, OH! how I adore you. You are such a sweet, sweet girl and I'm lucky to know you and call you my friend :) I'm so glad you are doing your best to keep all of us back home updated on your progress and the things going on in your life. Thanks for your positive attitude and awesome example to me, as well as everyone else reading your blog. You are so strong, and I know the Lord is watching over you. Don't give up on Him, and He won't give up on you. I love ya girl!

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  2. You are a very strong young lady. I am certain God will carry you through the hard times.

    Eat whatever you can right now, enjoy it. Twenty years from now, you will be worrying about everything that passes your lips.

    You can be a new statistic. The best survivor ever. Your faith and the prayers of many will carry you through.

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  3. Rachel, Joseph and I pray for you every day! Thank you SO much for sharing your thoughts and experience with those of us who love you! Please tell your mom we love her too, and give each other a hug from us! See you soon!! :-) Love, Erin and Joseph Smith :-)

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  4. I love reading your blog. It makes me laugh and cry. Thanks for keeping everyone posted. We love you and pray for you daily. Give Diane a hug for me.
    Deanna Taylor

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  5. Rach! I'm sending you something in the mail really soon! We just moved to Logan so as soon as I find where I packed my deodorant and my toothbrush I'll send it out! :) I love you. You are amazing.
    ~MarLynyparskinny

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  6. Rachel!! Your story is such an inspiration! You are an amazing young woman!! I often see you walking up and down our street and you have been so kind to my family- We are praying daily for you, for you to find the comfort and peace you need to fight on!!
    God Bless~
    The Reads

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  7. Rachel - we don't know you but we read Cute Girl Hairstyle blog and learned about your condition there. You have an amazing spirit! We are praying for you!!

    Tamiel (from Texas)

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  8. Rachael-
    Love reading your blog you're a warrior fighting a battle only you can win. I love reading about your journey through this and appreciate your willingness to share with all of us your personal experience. I find it's a selfish way I gain perspective as to the things that matter most, reading about how others fight their fight. I worked with an amazing guy back in high school who was fighting leukemia he would always raise his arms in the air as in victory and yell "Born to Win" and you are BORN TO WIN!!! Thinking of you and your mom as you go through this and sending positive thoughts and prayers your way!
    Liz Gardner

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  9. I will say it again...your attitude is amazing! You are such a great example to JUST BE HAPPY. Sometimes it feels so hard to "just be happy" but you make it seem easy...I will remember this next time I'm pouting about something small. Just a thought, have you had a partiarchal blessing? I'm a convert so I'm not sure when most people get them, but it would probably be something to read over at 2am when you wake up :). Thinking and praying for you. Jessica in California

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  10. I have a card on my nightstand I wanted to send so you could get it out there. I have been trying to come up with something inspiring, but it will probably just be rambling. Jane drew a picture for you (scribbling), but insisted that "Rachel's picture" hung in her room first before we send it. I wanted to make some head wraps for you since your mom probably doesn't have her sewing machine to make a plethora. Hang in there. There isn't a prayer said in our home (and there are a lot of prayers said between the five of us that talk) that doesn't include you. Amazingly Vaughn, Everett, and Jane remember you every time, usually their prayers are not really thought about (usually staring at a wall and not paying attention). However, you and Diane are always remembered. We love you!

    Megan

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  11. Yay! I finally caught up reading all of your posts. Let me tell you, Rache, you're the coolest girl ever. I seriously admire you so much. Not only because of your attitude but because of your beautiful testimony (and beautiful face, obviously.) And I'm not just being cheesy and saying this because of your current situation. I've always thought you were amazing. I am glad you're liking the YW in Memphis! Yay!! I LOVE YOU SO MUCH!

    hugs n' kissies ;)

    KT

    p.s. I have those same striped pajama pants.

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  12. I love you. I love your mom. I love miracles and I believe in your miracle.
    Love,
    Shannon Swain

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  13. Hi, I followed you over from cute girl hairstyles. Your radiant fun personality just makes me smile! I'm praying for you! :)

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  14. Rachel, I just found your blog, and - you are amazing! I'm praying for you! God will be with you through it all; and He's a pilot who knows where He's going! God bless you!

    Anastasia

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  15. You are so strong!!! I know you can beat this- it just takes willpower and prayerpower. My bff's grandpa had cancer and it didn't look good; but he decided he was going to beat it and he has been cancer free for a year! And you are in my prayers! I'm going to keep following your blog because you are such an inspiration! God bless you!!!

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  16. Rachel,

    You are strong and a great example to us and many others. Know you are constantly in our prayers and thoughts. We love you, Cindy and Makenna.

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  17. I'm just a mom out here in Nevada who is praying for you & who has asked my friends to, too.

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  18. We Love you, and are grateful for the updates. You are amazing! You are always in my thoughts and prayers. I was canning peaches and peach-raspberry jam today, and thinking of you and your family all the while. Be strong, YOU ARE AMAZING!

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  19. You make me laugh, even though your situation is not pleasant. Your attitude is amazing. I am praying daily for your comfort and peace of mind. God's plan is a crazy thing and I'm not gonna sit here and quote Jer. 29:11 for ya, because sometimes that isn't much of a comfort when the whole wide world throws that verse at you! Just know that you are cared for immensely and nothing is a surprise to God! You're in good hands. And btw, cancer or no cancer, you're still beautiful as heck, not even just saying that.. :)Keep the faith!

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  20. Please tell Diane (a.k.a. Mom) I admire her children. You all inspire us and it is an honor to call you our friend.

    The Tafoya Family

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  21. Rachel,
    Ive never had the pleasure of meeting you, in fact I'll admit that I only know of you through your relatives who make the cute girls hair videos. First of all I want you to know that you inspire me, you are my idol, from the first time I clicked on the link to your posts I could tell you were something special. You show composure and grace through the unthinkable, you find humor and joy in simple things and teach others that every day is a gift and evn the smallest things are miracles. I believe that God has a plan and I also believe that he sees how you're inspiring others and how you show love and gratitude towards everyone. I will keep you in my prayers ( My mum and I love to pray to saint Jude and I believe he can help ). Stay strong and please eat anything you feel like!!!! Sending love xoxo

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  22. Rachel-
    Just like Liz I love reading your blog. Your strength has touched our hearts. I know you have very hard times as well. We are praying for you and your family. Thank you for sharing with us-even those of us that didn't know you real well before. I know heavenly Father will support you through this-he is always there for those who put their trust in him.
    Love Rebecca Wright and family

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  23. When you wake up at 2 and need somthing to read, read D&C 98:2-3...my mom always told me to "take a deep breath and smile and use that backbone that I know you have," thought you might like to use that line when you need a lift, like when you are getting more needles(I HATE NEEDLES TOO). You are such an example to us all...You are in our prayers. Lucy's Primary teacher just finished her last radiation treatment and she knows that she has been healed because of her prayers, so she is counting on that for you too. Thanks for keeping us posted on your daily adventures. If you want another family/friend fast, just say the word and will all be here to lift you up.

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  24. Thanks for the updates. In our thoughts and prayers!
    Love, the Huish's
    Oh, by the way, is the Brazilian-crazy-animated doctor Alberto Bronscier, by chance?

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    1. Oh, he is just phenomenal. Though our Sades was treated at Primarys, we conversed with him through email and phone calls on various occasions. He was always very caring and passionate about making a difference. Grateful you are in such kind and capable hands there, Rachel. :)

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  25. thanks to cutegirlshairstyles, you have a TON of people rooting for you. good for you for trying hard to be as positive as possible and giving it to God. you're gorgeous...keep smiling and fighting, little lady. much love and prayers coming your way. <3

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  26. Don't worry, I received the following text message from Aly today. She is on some pain medication, so she texted it to me instead of commenting it here:

    "Tell Rachel as far as make a wish goes she should do a really cool experience... vs. meeting a celebrity (they are just people and not cool or inspirational) and she is just far better and so yeah... I tried to write this on her blog but I'm on pain pills and I couldn't figure it out... She could stay in cinderella's castle in Disney world, or overnight in Disneyland or have her look into the pirate house in Boulder, Nevada (it's like 10,000 a night) but I bet they would do a make a wish... And she could take a vacation for like a week with all her friends and family (there's like 20 bedrooms) or see the pyramids... I'll keep thinking."

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  27. What a lovely read and you seem like such a wonderful person.Keep positive and keep smiling because you have all your family and friends and people who have heard about you all supporting you xxx

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  28. God bless you. with love from nyc.

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  29. Rach, you are the strength for so many people.

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  30. Your story is so touching. I enjoy reading your blog and hearing about how your day has been and what challenges you are facing because you inspire me to let go of the little things in my life that are holding me back.

    I also put a link to another bloggers page. She has cancer but it is different than your, but her journey and her outlook are so neat. She gets graphic sometimes but she is just keepin' it real! Don't let some of her titles for entries scare you, she has a wicked sense of humor.

    You have a lot of people behind you that are your very own personal cheerleaders, so lean on us when you are having a tough day just as we lean on you for strength and inspiration.


    Colleen


    http://www.lilblueboo.com/choosejoy

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  31. This comment has been removed by the author.

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  32. http://www.lilblueboo.com/the-cancer-chronicles

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  33. Okay, so if you highlight these two links and then right click, it gives you the option to go to the link. Sorry for all the posts, I am new at this and wanted to be sure that you had a way to get to the pages.

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  34. I don't really know you. But I promise that the lord is watching over you and only wants the best for you. May you be blessed with the strength, courage, and peace to get through these tough times.

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  35. Sounds like you are making this a great experience (as much as you can!), and I'm sure blessing all the lives of those you meet. Here is a funny story for you. When our family went to Nauvoo last year we were amazed at how loud the cicada's were. I had never even heard of them before. One night I asked my husband, "What are the names of those loud bugs again." In all seriousness he said, "Quesadillas," thinking that was their name. His dad and brother started laughing and said, "No! Cicada's!" Ever since then we have called them "quesadillas." Do you have any good books to read or things to listen to when you wake up in the night? On MormonRadio.org I often used to listen to the "Conversations," with leaders of the Church when I had to get up in the night with babies. You may enjoy them. :) Anyways, I think you are awesome. Keep being strong, Rachel!!!

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  36. Rachel, this is Kirsten Barksdale. I'm commenting with Morgan's log-in. You are one amazing girl and I want you to know that we pray for you and your family every time we pray. One never knows what will happen to us in this life and it's always shocking and hard to hear of this kind of thing with someone you know and love. Chris said the other day, "you know, I've realized that I have no control over my life, all I can control is how I treat others and how I can relieve their suffering and not cause more suffering." I've thought a lot about that and I know he's right and that is exactly why we are here. You've been right on about that your whole life with everything you have done for others. Sure love you and your family. Kirsten

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  37. It's funny to me that I am so much older than you, yet it is you who is teaching me how to live life and have a better attitude. I love you, Rachel. Keep up the faith. Notice how it is times like this that makes us trust and love God all the more.

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  38. Rachel we miss you like crazy. just weird to look up at practice or today at our meet and not see you. Many teams including you're teamates, are praying for you and want the best for you!

    Know that humor and patience are key in you're journey. Love life every day!

    Thanks for keeping us posted!

    love,

    Coach Andy

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  39. Rachel,

    I just wanted to add my "amen" to all the comments about how wonderful you are. Even though I am old enough to be your mom (we won't go there), you are teaching me a great lesson on faith. You truly are an amazing woman!! It's interesting how the Lord provides His children with the experiences they need to return and live with Him. Thank you for being part of my "experience" and strengthing me through your example. I know your family is proud of you and more importantly our Heavenly Father is proud of you!

    Love you,
    Valerie Christensen

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  40. Hi Rachel I don't know if you remember me but I'm Hailey Johnson (Bill and Sherry Young's) daughter and I used to baby sit you.:) I just wanted you to know I am thinking about and praying for you daily. You are such an incredible girl and such an example of faith. I am amazed by you!Thank you for strengthening my testimony and inspiring me to be a better person. We will continue to pray and fast for you!

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  41. Rachel, You don't know me, but I learned about you through you aunt Mindy's hairstyle videos. I am also LDS. I think you have been very strong and brave and positive. That is amazing. I wanted to let you know that my best friend from high school, her name is Harmony, her nephew is at St. Judges right now getting treatment for brain cancer as well. His name is Levi Ewing, he is just one hr. Old. You may have seen him, h is pretty much all bald with a couple scars on his head now. His parents are Nathan ad Alicia. Levi is the youngest of 5. They are amazing people, very religious (not LDS). Here is the link to his story that they try to keep updated with his journey, http://www.caringbridge.org/visit/leviewing. You may have to copy and paste. His grandparents are David and Janet, and Janet has been staying down there a lot to help. If by chance you see them, they are really amazing people . You and them are an inspiration. I myself have had my own journey with help issues, not the same as yours. I am a military wife and mother of 5 and I have had health issues for 6 years and it took 5 years to finally get diagnosed. Than I had to travel to the mayo clinic in Arizona to start getting better with treatments. I am finally join the road to recovery. But being positive has been what has made all the difference . I find the joys in the smallest of things and know that God is in control of all things and that it is His will, with what happens to me. When I have found that I may be feeling more down, I read the scriptures. Usually just pray to be led to what I need to read at that time, and it always is a scripture that helps. Also I love reading about Joseph Smith in the Doctrine and Covenants, especially when he was in the Liberty jail. I grew up in Liberty, More for most of my life, that is where Nathan and Alicia and Levi and his grandparents are from. Anyway I hope too day finds you in good spirits and have minimal pain. And if you have the chance to meet them or just read about Levi's journey, it is worth it. praying for you and your family.

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    1. Ugh! Darn auto correct. Well I hope you can understand what I was trying to say, cause there are so many mistakes. Hope today finds you in good spirits.

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  42. hi Rachel. iv read all your blogs and find it.so.amazing how you are keeping strong also sharing it with the world! truly amazing! you are really pretty and brave and love when you say you are your own statistic! YOU can beat this! your amazing!! Sonia ( 17 yrs too ! )

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  43. Rach!!!
    I love and miss you so much! You are THE best
    love,
    Lauren Monson

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  44. I just want you to know that I am in awe of you! The past three years I have dealt with my own trials beyond what I thought I was capable of bearing and you are absolutely right that God loves us, you, me, everyone. I have been carried through pain and sorrow, I certainly couldn't have bore/borne it alone. I wish that I would have started out as you have with your journey. You make me want to live well and I am certain that I am not the only one who has been inspired by you and your story. Please keep documenting and trusting in God. You are amazing!

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  45. I just found out about you from the cute girls hairstyles. My daughter has been a St. Jude patient since she was 6 months old, on Sept. 6th she'll be 6 years old! At first they told me she didn't have much time, but she's done so well they wrote a papter about her. Stay positive ALWAYS. Don't compare yourself to other patients. You have cancer & your twin doesn't that right there should tell you God made you an indiviual even if you do look like someone else! I'll be praying for you.
    Lisa Davis

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  46. looooooooooove you bebe g. see you on thursday!
    jordz

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  47. I learned about you through Cute Girls Hairstyles and I am praying for you! God loves you and your blog will be an inspiration for others that are struggling with different health issues. Remember that you are always wrapped in the arms of our Savior.

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  48. Rachel,

    My name happens to be Rachael Stratton as well. I first heard about you a few weeks ago at a Youth Conference because we had the same name. Cute cross country girls were excited to know two Rachael Strattons. Then I heard about your story and am so impressed and inspired by your strength. I smiled as I read your post where you said, "I can do hard things." We in the Stratton family have that very motto only we say it, "Stratton's do hard things." You are doing a very hard thing, and you're doing it with such grace. Thanks so much for your example! Proud to share the name with such a spiritual giant!

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  49. I'm in a tough time in my life and I came here through a link from your sister. I think God is calling me. THANKS Rachel for blogging rip

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