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7/10/2019 29 Comments

July 10th, 2019

I’ve been feeling a lot of things lately.

The presence of God, the importance of my family, the life giving opportunity of working at the summer camp that aided in my spiritual growth as a child, brokenness, happiness, freedom, and though I’d rather not be feeling this last one, the mountains and valleys of what it means to have cancer and be advancing closer to my transplant date.

I am more than grateful that for the month of June and part of May, I spent all of my time in the Ouachita National Forest on the grounds of Camp Ozark. I wish that my words were enough to describe what this place means to me, but I am certain I will never be able to fully communicate what an impact Ozark has had on my life. As a camper, attending camp every summer was routine, and something I looked forward to all 351 days that I wasn’t there. I built lifelong friendships, worked to be more like my college counselors, admired the Torn family from afar, and deepened my relationship with Christ. This year, returning to camp as a counselor, I have grown in so many spiritual, physical and emotional ways that I never saw coming. In the middle of my time as a counselor I went to Houston for more chemotherapy, which has been preparing me for my transplant at the end of this month. Before relapsing in May, I was not expecting to have to be the “cancer girl” while I was living out my dream as a counselor, but God had other plans, and I am thankful that this period of camp and treatment pushed me to exude strength and persevere through another round of chemo. It was exhausting and difficult at times to want to continue, and I questioned whether or not my body would able to handle the treatments and camp at the same time, but I am confident that the power of prayer and God’s divine plan is the only thing that made it possible for me to experience camp and cancer at the same time.

My medical update: In the last few days, I have completed my third round of chemotherapy since my second relapse. This chemo is working toward getting my scans clear so that we can advance into my bone marrow transplant before the end of the month. Upon arriving at Texas Children’s last Friday, before my most recent scans, I prayed that they would be clear, and that my transplant would be just days around the corner. After meeting with the bone marrow team and getting a lot of questions answered, we headed to have my scans, only to learn that there was suspicious activity in my arm pits and my groin. This level of activity did not cause enough concern to stop our plan, but it has set us back a good amount of days. I will not advance into the period of my transplant until my scans are clear. As of right now, my next scan is scheduled for July 23rd. I ask you to join me in prayer that those unusual spots happened to simply be unusually sensitive on Friday, and that these next scans will read as clear, so that we can move into starting the transplant. With all of that being said, my stem cell harvest has already been on the calendar for July 15th, regardless of what the scans were going to say. Tonight, I started the first round of potentially seven rounds, of a shot that will boost my stem cells to prepare me for my harvest on the 15th. Upon arrival at the hospital that day, I will have a catheter placed in my chest to make it possible to collect the healthy cells from my blood that will be used for my Autologous transplant. The cool thing about stem cells is they can be kept fresh for up to five years if they are refrigerated…pretty neat if you ask me. Once my cells have been collected I will get to remain at home until the day of my next scans, and from there we will advance accordingly. My prayer is that the scans will read clear and I will be placed in the hospital for 30-40 days in order to complete the transplant. I will use this space to update everyone as much as possible during that time. Now, enough of all the medical talk: let’s talk life.

I have learned over the last month that I have a special passion for middle school girls.

When I started at Ozark I was hoping to be placed with high school girls because for some reason in my mind, that made the most sense. I have never been so wrong in my life. Having middle school girls was the most rewarding experience because they challenged me, laughed with me, cried with me, grew with me, praised with me, humbled me, and strengthened me. They made me a better me. I am grateful for the hardships I have endured and the story I am living because it allows for more conversations about the Lord and what He is doing in my life with young women whom I didn’t realize existed just two months ago. Every excruciating day of treatment was a day that I gained more certainty that the only thing I could rely on was God, and that meant another day to communicate that to the faces of 12 and 13 year old girls.

If there is one thing I learned while working at camp, it is what it means to have confidence. I’m not talking about confidence that has to do with defying insecurities and being comfortable in my own skin, although I do think those are important qualities to have. I’m talking about confidence in the creator. Confidence in the God who works all things out for the good of those who love him. The God whose plan is so great and so massive that we will never be able to understand the ways he is working. I am working to have confidence in the things I cannot control, and confidence in the ways that God has used me as a vessel of Him rather than to make something of myself. I learned to have confidence rooted in Him and Him alone. Not in my accomplishments, not in my appearance, not in my greatness, and not in my cancer beating mind and body.

Yes, I have defeated this disease more times than I would like to admit, and yes I have attempted to keep a heart of strength through it all, but none of that would be possible if it were not for my God. And your God. And our God. I am confident in him. I am confident in what he is doing. And finally, I am confident in his timing, though timing is the very thing I am struggling to come to terms with right now.

Honesty hour: it would be extremely easy for me to remain behind this screen, the majority of you knowing me as a friend and a daughter. But then there are some of you who have never met me, and maybe our paths will never cross. But, I have one thing I’d like to admit no matter what group of relation to me that you have found yourself in. Over the last month I have struggled with wanting to continue writing. To continue telling my story and continue putting on a brave face. Today, I come to you as Rylie: A girl wrapped up in sadness, confusion, and uncertainty. I give it my all, every day, to keep this smiling face but there are days when I simply want to just sit and feel sorry for myself. I want to enter back into that “why” mood of asking all of the questions under the sun. I am still confused at times, to this day, why God would choose me to walk this path, to cry these tears, and to feel this sorrow. But once again I am reminded of my purpose. Hiding in the shadows and restraining my vulnerability, is letting the devil win. Oh, how badly he wants me to sit in silence, when the Lord has called me to do otherwise. God says be loud, and loud I will be. So I’ve combined these words from a few moments where I gained the strength to pour my heart out, in order to tell you…on the other side of this screen…that God is still working. He always is. He’s working in summer camps, in hospitals, in neighborhoods, in you and in me. Do not forget that.

On the night that my parents and I returned home from my most recent scans, my mom read me this passage from Lysa Terkeurst’s book, “It’s Not Supposed To Be This Way.” To close out my last post before heading into transplant, I want to leave you with an echo of these words. They encouraged me, and I hope they can do the same for you if you have found yourself in a place of trial or sorrow.

Terkeurst wrote: “Blessed is the one who perseveres under trial because, having stood that test, that person will receive the crown of life that the Lord has promised to those who love him.” (James 1:12)

“Oh can you imagine? Being deemed to receive a crown of life? Remember how they place a crown of thorns on Jesus? What a picture of how our sorrows feel today-so much like a crown of thorns. But that awful crown is a foreshadowing of how eternity will change everything. It will be turned upside down in eternity. Grief will turn to joy. Heart break to shouts of thanksgiving. Crowns of thorns to crowns of Gold fit for a King….[This is] a dialogue between God and Jesus that just spilled out from my pen to my journal one day. It’s not prophecy. Nor am I trying to proclaim divine words that aren’t mine to give. But when this allegory came to me, it settled in my soul and felt right for both you and me. I call it “Upside Down”...

"The Son turned his head and quizzically said, “Hmmm…Father, those are really strange words to assign to this life. Can we pick some other words? I have some fantastic suggestions for this one. She’s optimistic and strong. She’s caring and compassionate. She’s good and generous, and she’s so very aware of others. She’s a deep thinker and a deep feeler all in one. Yes, she’s rare.”

Terkeurst wrote God's response as, "I know. And that’s why she must be upside down.”

“Father, as she gets older I don’t think she will like that You gave her these words. I think she will question, ‘Why did You do this to me?”

“The Father replied, “She most certainly will question me. Her favorite question of all will be ‘Why?’ And it will serve her well. For in the incessant wrestling she will come to learn something most people never learn. She will see I didn’t do these things to her. I did them for her. Though it broke my heart to give her the opposite of what she wanted, she will watch me eventually turn all that bad into good. I will turn it all upside down, and in doing so she will live right side up. She will be a beacon of light in extreme darkness. She will be a voice of hope when others feel all is lost.”

“Tell her I gave her the words upside down because she’ll give the world permission once again to see the wonderful in the why. Her whys have made her wise. Upside down are the perfect words for a girl who will eventually land right side up, messy and marvelous and so very alive.” -Lysa Terkeurst

God says be loud, and loud I will be.
29 Comments
becky Rodriguez & Family
7/10/2019 07:13:23 pm

💜 keep writing, keep fighting, keep being an inspiration in the valleys and on the mountaintops , you are simply amazing Rylie. All our love.

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Carrie Bailey
7/10/2019 07:28:50 pm

Rylie,
I am so humbled and blessed to have gotten to know you just a little bit this summer. Thank you for continuing to share your journey so that we can know specifically how to pray for you. Thank you for allowing the Lord to speak through you!!

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Martha Unland
7/11/2019 09:23:29 am

I don't personally know you, but know of your family as an employee of GISD. My prayer is that you do stay LOUD!! Know that you are encircled in prayer from those that have never even met you personally.

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Wendy
7/10/2019 07:52:51 pm

BE LOUD!
You can be down because as you know that’s when we learn just how strong we are, how deep our faith is and how much we can truly endure. Keep the faith, keep writing, and keep being you!
We love you and will continue to pray hard for clear results and positive outcomes. 💜🙏😘❤️

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Rebecca
7/10/2019 07:57:45 pm

Sweet girl, keep fighting and be as loud as you want. Take the time to be sad and to question because as someone who lost her husband of 41 yrs in his sleep suddenly, those days bring better and stronger days! Praying for you always. Thanks for the update!💜

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Jill Beerman
7/10/2019 08:02:34 pm

Your words inspire. Your honesty is admired. And you make me a better person by reminding me how to face adversity like you do with grace You will beat this!!!!! Keep writing!!!! One day they will make a movie about you! You are simply AMAZING!!!!

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Jenny Mashburn
7/10/2019 08:16:19 pm

Keep writing!! Praying every single day!

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Terry Fretty
7/10/2019 08:24:37 pm

Rylie I have read every one of your chapters and I am always amazed at how much wisdom you have for such a young lady!Every chapter draws me nearer to God. I was praying for you in church last Sunday and peace came over me and the words “all in your timing just flowed out”. Rylie I do believe that he has a big plan for your and he is working on his masterpiece .Marti is one of my best friends and you certainly have inherited her genes for kindness and humility. Stay strong sweet one. So many of us are praying daily.❤️😘

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Veronica
7/10/2019 08:33:31 pm

Prayers that your scans are clear. Strength for your transplant. And love for your spirit that shines loudly through your smile and tears. ❤️

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The Notgrass Family
7/10/2019 09:06:15 pm

TEARS!! Rylie, you are that rare girl and God has used you to touch so many lives and point them to Him. Praying always for you. Keep sharing your story! The world needs to hear it.

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JShaver
7/11/2019 03:34:19 am

What an inspiration you are - in the valleys and on the mountain tops - your compass points to Jesus. Praying you will know His presence in the storm and I am learning so much continually through your words. You are brave and beautiful! Praying for Hope and healing and Romans 15:13 for you.

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Nancy Boyd
7/11/2019 04:26:05 am

Precious one, I was in the Choraliers at TWU with Marti, your grandmother. I hope you will keep writing. I will keep reading and praying. Hugs.

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Chris Gieringer
7/11/2019 04:33:05 am

I am humbled by your faith, strength and courage. You touch so many, from those precious middle school girls to grandmothers. You will never know how many people you have blessed with your writing. Sending Loud love and Loud prayers.

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Melanie Johnson
7/11/2019 05:08:13 am

Rylie- you are beautiful and brave! Thank you for sharing your journey with us. You encourage us all to trust God and praise Him in the storm. I love your heart for others. Be loud beautiful girl! You are in our prayers! May God clear the spots for your next scan.
Blessings!

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Mary Lu Layton
7/11/2019 05:10:58 am

You are always in my heart and my prayers. Thank you for sharing these thoughts-they are a wonderful reminder that faith, trust, and prayer give us hope and strength. Be loud sweet girl!!

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Jill Prescott
7/11/2019 05:31:30 am

Rylie-
Be loud, and when you cannot, wrestle hard, and when you cannot let those around you be your loud and wrestle for you.
I am banging on the doors of heaven in prayer for you. I am so grateful that you share your words and your journey with us, and in so doing, allow us to see a glimpse of what God is doing in you and through you. I pray that even in the darkest days you can feel His presence turning you right side up. That you continue to grow and share and most of all, heal.
God bless you and your family in the days to come. Praying for clear scans and strong and mighty stem cells!

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Helen
7/11/2019 05:51:39 am

This is so inspiring !!
Prayers lifted up

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Sharon Foster
7/11/2019 07:32:36 am

Thank you for continuing to take us with you on your difficult journey. Our family prays for you asking for God’s mighty and complete healing for you. We will beg God for clear scans and a successful transplant, and we send much love and big Baylor hugs! 💚💛💚

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Jen Corona
7/11/2019 07:51:34 am

Coronas praying daily and praying hard for clean scans. Wow middle schoolers! What a great role model you are for them! Praying that Houston's weather does not get bad also

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Kristin Harden
7/11/2019 09:06:47 am

I’m so happy that you’re having a great summer at camp with Middle School girls! They are blessed to know you. I want to introduce you to a friend of ours who has been through something similar. Logan Sneed. He is 23 & you can like his Facebook page. He has dealt with his cancer in a different way but also very positive. Luv you & hope to hug you soon!

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Haley Bergman
7/11/2019 09:23:17 am

Ah this made me tear up. I’m so glad you were able to be a counselor at Ozark! Love you girl! You are incredible and I pray for you and your family each night. You’re one of those people that people meet and they never forget. Your light is beautiful and anyone who is blessed enough to know you would agree. You’re truly one in a million!❤️

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Krissy Derrick
7/11/2019 12:54:41 pm

You are amazing!!! Much love!!!!

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Tracy Montoya
7/11/2019 01:58:22 pm

Dear Rylie,
You have the gift of writing. It’s honest and we feel your heart when we read your words. Thank you for continuing to share your story.
Being a counselor to middle school girls is a hard job, as is teaching, but the reward that comes with it is unbelievable! I have no doubt that you encouraged and inspired those girls. What a blessing they will never forget.
Please know that we’re praying for you and sending much love to you and your family. ❤️

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Deeanne Litton
7/11/2019 08:32:25 pm

Rylie, You have a gift of word and it’s so obvious that the spirit is in you! Your posts continue to touch my life in many ways! You are being mightily used to testify to the Amazing Glory of our God! I pray for you continually, I check with your MiMi to see how you’re doing, I loved and continue to hold such sweet memories of your mom...but the most wonderful thing...we both are daughters of THE KING, sisters in faith and in prayer! Stay LOUD ! You have words to praise and encourage! God’s reach through you is continuing to grow...as are you! Cancer can NEVER take any of this from you! God has bolstered your heart, your grace, your passion, your love, Your YOU with HIS mighty hands! Look out world...HERE COMES RYLIE ...LIVING OUT LOUD!
Bless you sweet girl!❤️Mrs. Litton

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Jill Calder
7/12/2019 07:34:59 am

You are an amazing example of faith in every circumstance. Continue to “Live Loud.” We will be in your balcony cheering and praying for you! My love and prayers, Jill

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Billie
7/12/2019 07:10:00 pm

I’m so sorry Rylie. My friends and I have you in our thoughts and prayers. We know you can do this! Team RYE!!!! Guardian angels are looking out for you♥️

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Janice bryant
7/13/2019 12:27:24 pm

My daughter, Carrie Bailey shared with me your posting. You are so blessed and I am so blessed to read your testimony. Keep sharing as God is using your words to help others🙏🙏🙏🙏

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Misty Greene
7/14/2019 04:03:26 am

FAITH ....
FAMILY
AMBITION
INTEGRITY
TRUST
HOPE...

You are simply amazing. What a role model for so many. Many prayers sent your way. I love reading these. You write your own story and let me tell ya. You young lady will have many more to share. Your fight for life and sharing God’s words with us all is by far a blessing. God bless you. ♥️

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Lori
7/28/2019 10:58:02 am

Blessings to you.....I read about you on FB and although I don’t know you and I have no idea if you’ll find this inappropriate, I still wanted to let you know about Dr. Gonzales from NY. He is no longer living but knew much about healing cancer with diet and determined that different diets work for different cancers. His work continues and you can find this info with an internet search. I've also studied about using iodine to heal cancer. I have no idea what you’ve been doing with diet and supplemental nutrients but on the off chance that you weren’t aware of these 2 avenues, I wanted to let you know that there maybe nutritional steps to take. I pray your will is strong to carry you through your healing process. I have no doubt that you are surrounded by many heavenly guides to help you heal.

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