Blog Posts - RYLIE'S NEXT CHAPTER

2/26/2018 36 Comments

February 26th, 2018

Chapter twelve

Bald.

Charm is deceptive, and beauty is fleeting, but a woman who fears the Lord is to be praised. Beauty is fleeting. Beauty is fleeting. Beauty. Is. Fleeting.

Beauty. I have learned over the last few days that we, as humans of the Earth, seem to put our self worth in some pretty funny things. Our clothes, the shoes that we wear, our social status, and media. But most of all (and especially for women) we find our self worth in our appearance. 26 hours ago I shaved my head. Cut every last hair that remained after days of it falling out, into a small little buzz of fuzz on my scalp. A scalp that I had never remembered being able to see, due to the pounds of hair on my head. Ladies, listen up. This might sound crazy…but I wish every single one of your beautiful faces had the opportunity to look in the mirror at yourself without hair. To truly look into your own eyes and say “I am beautifully made, my outward appearance does not define me, others do no define me, and I am loved.” You are so loved by a God who knows exactly how many hairs you have on your head, and still smiles at you when that number has become 0. He smiles in an overwhelming admiration at you!!! Because he is a Father of unconditional love and he knows you were crafted exactly the way you should be. Hair is something that we let define us on the outside of our bodies, when we should be praising one another for the beauty that lies within.

I am currently headed back to Houston and one of my new favorite places, Texas Children’s. Tomorrow I will head to the Out-Patient Cancer Center early in the morning for a full day of activity. After talking with Dr. Dreyer, my Port (the activation site of my infusions from here on out) will be placed, and I will officially begin Day 1 of Round 2. Round 2!! What a crazy thing to see typed and to think about. Round 2 means progress and one month down! I will spend the next three days in Houston and will be receiving infusions on Day 1, 2, and 3. I am praying for strength in moments of weakness and frustration. I am so thankful for the many days of being in high spirits and good health over the last week. Though starting Round 2 may mean new challenges, I am ready to face them head on.

A couple of prayer requests for my next few days in Houston: The successful placement of my port, Minimal side effects of chemotherapy, and smooth transitions into Round 2 as a whole. Please pray for sunny days and for the doctors, nurse, and hospital staff of Texas Children’s. I feel good today. Things are good. Life is good. Today is good.

Bald is Beautiful.

2/22/2018 46 Comments

February 22nd, 2018

Chapter eleven

Stuck in the middle.

I have a feeling I will feel this way towards the end of each round. A continuation of that “is this even real??” feeling, and that “oh yeah…even though you feel fine…you still have cancer” feeling. In all honesty, I have had a wonderful week. The reason I haven’t posted in a while is simply because life has nearly felt normal. In more ways than one, this feeling is a good one, because it means I have suddenly gotten used to my routine, my medications, my schedule, and a new life away from many things I thought I would still be doing 2 months ago. This week I have enjoyed time at home with my family, a fun date with my handsome boy, and a special night getting the opportunity to lead worship at my youth group. I got the opportunity to sing the same song I had sung the night before I found out about my diagnosis. I mentioned in a previous post that the few days before my diagnosis were very special to me, and will be special for the rest of my life. I had chosen to focus on little glimpses of the Lord’s presence in each of the days leading up to my own personal day of “broken”…and I wasn’t quite sure why. God made it clear to me that I needed him in those moments even when I thought I didn’t. The song Death Was Arrested states, “My mourning grew quiet, my feet rose to dance. That’s when death was arrested, and my life began.” What precious words. Both the word “mourning” and “dance” happen to be placed in the same sentence, sang with the same breath. Though we do experience mourning in this life, God tells us that such emotion is never permanent. We are given the opportunity to raise our feet, raise our bodies and…dance. Dance in the moments of sorrow and in the moments of joy.

An example of dancing in sorrow for myself last night, was simply repeating the lyrics of this song to a young congregation who is yearning for a relationship with the creator. Personally, it was a moment of emotional exhaustion. But not for a moment did I feel like I would need to stop, turn around, or stop singing. I knew in that moment, stronger than I have ever known before, that the Lord was moving through me. Through every word and every breath. His presence was a feeling of support that I didn’t even realize I had been graced with until after I sat down. That last fact is one of the most beautiful I think I have ever come to terms with. When we are glorifying the Lord with our words and our actions, it simply comes naturally and it feels personal. It feels like you. That’s because the Lord is simply speaking through you, and you are just a physical representation of him in that moment. How awesome is that? Even cooler is the fact that he chooses the most ordinary individuals, beings who will never measure up to his greatness and his love, to represent the Father of all Nations…the living, breathing, holy God.

I experienced a moment of weakness as I stepped in front of my mirror last night to find myself staring back at a girl with nearly no hair left on her head. With the ability to pull back parts of my hair to get a glimpse of my scalp and suddenly imagine myself with no hair at all. I wanted to hit something. To pull all the rest of my hair out right there. For a few minutes I couldn’t do anything but watch the silent tears run down my face and question once again “why?”. In the back of my mind I guess I was hoping I would have my hair for longer than a month into my journey, but I’ve learned that sometimes it’s just extremely difficult to come to terms with things that we wish were never true. If I had it my way, I would start my life from the beginning urging young girls to ignore the definition of outward beauty. Because no matter how many times I tell myself things are going to be fine, they are still going to be different. I call these moments of mine “bubbles of weakness” because a bubble is just as easily blown up as it is popped. The moment of weakness comes just as easily as it goes. I have come to terms with my circumstances and I am ready to take action regarding my hair. I am excited to announce that I will be shaving my head this Sunday night. I will looking into wigs and sporting some new headbands and hats, but once again…not many people can say they were bald for a period of their life. Bring on the most defining moment of confidence I have had to experience in my 18 years of living.

Different look, same Rylie.

2/17/2018 31 Comments

February 17th, 2018

Chapter ten

A few of my favorite things: my hair & planning.

I am going to start out this post by saying that my goal is not to make anyone feel sad as you read my words. I am just learning to adjust to life in new ways, and let go of things I used to have control of.

A little side note: I have been feeling good this week other than some pretty bad jaw pain from my Chemo Infusion last Monday. On Tuesday I cut about 6 or 7 inches of my hair off, and I love it. I hadn’t changed my hair style or length in probably 4 years, and it’s refreshing to be sporting something new. On that note, I have decided to be honest with my feelings of hair loss, and some other things that are newly out of my control.

At the beginning of this journey, when I first found out about my diagnosis, I was hyped about going bald. That is the honest truth. I thought, “dang!! not that many people can say they were bald for a short period of their life.” I would imagine myself at things like Prom, or walking the streets of Baylor in Waco with no hair. I am here to tell you that though my confidence level regarding this subject was very high, it has slowly lowered. At this point, I don’t know what will happen to my hair, and I don’t know if I will lose all of it. Regardless, it’s scary. As I said above, I love my hair. And adjusting to not having something that I’ve had all my life will be difficult. I am writing this because yesterday afternoon I began to notice that a good amount of my hair was already falling out. Now, if you looked at me you wouldn’t be able to tell that I’ve lost that much…but I felt disheartened as the day continued and I couldn’t run my fingers through my hair without pulling out 10 hairs at a time. Though thinking about losing my hair is both frightening and confusing, I am learning to prepare myself for my potential “no hair” day.

I mentioned in my last post how much I love my planner. On a daily basis I open it up just to make sure everything is right, that I have completed what needs to be completed, and that life in my little head is going as…planned. In the past month, God has held my hands through many things, but he has also separated them from the thing that makes me feel most in control. I spent 8 days in the hospital, not knowing what tomorrow would bring, what my body would suddenly start doing or stop doing, and I slowly began to give each moment to him. When I start to get nervous about the future, and not knowing what a lot of this process means for “college” rylie, for “married” rylie, and even for “mom” rylie, all I can do is remind myself that he has it all under control. God knows all my next steps before I am about to take them. He knows something as little as what I will have for breakfast tomorrow, and something as big as whether or not I will be able to have children. I pray for strength in knowing that he holds tomorrow. I pray for assurance in moments of weakness. I pray for overwhelming love.

Trusting in Him.

2/15/2018 36 Comments

February 15th, 2018

CHapter Nine

My Story

In a recent blog comment, I was asked to share my testimony. Let me start out by saying that before 3 weeks ago, I called my story “the normal story”. I considered it not interesting, boring, and (I’m sad to say) not important. I want to reiterate before I hit you with the mother load, this important message: no story is too small, boring, or uneventful. God uses each and every one of us to make his love and his name known in big and small ways. He is so mighty, and so powerful, and he is working in your life!!!! Every day, every second, and even right now as you have found yourself reading the words of a girl you may have known your whole life, or just happened to stumble upon on the world wide web. He does some good, good things. I’m here now to tell you about what he’s done in my life.

To start off, I have grown up in a christian home. My parents are both beautiful examples of what it means to be god fearing and to seek the kingdom. I have attended church on Sunday mornings since I was born, and God has just always kind of “been there”. When I was 10, I started attending a summer camp, that I would consider my second home, Camp Ozark. Though Ozark plays a huge role in the beginning of my story, I attended camp there for 2 weeks every summer until my very last session just this past summer. It has remained a constant in my life, and has shaped me into the woman of god that I am today. Imagine 10 year old Rylie. Sweaty, tired, and happy, sitting still and quiet on a warm Arkansas night, surrounded by girls of all ages. These girls and I listened intently as Ali Donelson, now known as Ali Monk, shared her story and what it meant to be a woman of god. Before that moment, I had never listened so intently to a message about God, my faith, or the importance of living a life for christ. She begged all of us to look her straight in the eyes and understand that each one of us was perfectly, wonderfully, and beautifully made. That we were treasured by the one true King, and that nothing we ever ever ever did would make him stop loving us. I am happy to say that I have listened to that talk a total of 10 times now. And gosh, it never gets old.

When I returned home from camp that summer, I talked to my parents about my understanding of what it meant to give my heart to jesus. That I understood he died on the cross for my sins, so that I would never have to suffer and so that I would be given the opportunity to one day live with God in heaven. I was baptized at my current church, First Baptist Georgetown, on November 14th, 2010. I understood the fact that the waters didn’t heal me, or that from there on out life was not gonna be just a bunch of flowers and rainbows, but this was just the beginning. When I entered the youth group in 6th grade, I got the opportunity to go on my first mission trip to Mission, Texas, a small town near the border of Mexico. My biggest eye opening experience from this trip was learning that God was so much bigger than my little world. As a youngster, it was hard to grasp how big our god was, and I’ll be honest with you and say I will never grasp how big our god is. Standing in mission, singing worship songs in both spanish and english, and getting to lead a children’s vbs at a local church there, I soon learned after attending that trip for 4 years that god was way bigger than I could ever fathom.

My sophomore year of high school I traveled outside of the country for the first time to Gdynia, Poland on another mission trip with my church. this experience was life changing for me because it was the first time I felt like I had completely trusted God with his plan for me. I am a planner. I like to have everything perfectly lined up, organized, and easily understandable. If you know me well, you know my planner is one of my most favorite things. Poland was something that I felt like I had let God take total control of. but little did I know, he had a lot more in store for me down the road. 3 weeks ago I was told information that would completely, and I mean utterly change my life forever. Though this blog has many many details of my journey, I am still going to start from the beginning.

For the majority of my senior year I have been “off and on” with God. We’ve had our moments. I took for granted the fact that he was always there, always loving me, even when I pushed him away and said “No its okay God I’ve got this one.” Little did I know that on January 25th, 5 days after my 18th birthday I would receive news that I had been diagnosed with Hodgkin’s Lymphoma. Cancer. A simple word, yet it haunts humanity and controls or deepest feelings. I will tell you that 3 weeks later I still sit here typing in tears, never wishing my January 25th experience on anyone, nor ever wanting to live a moment like that over again. But man. What a god glorifying, heart wrenching moment it was. One day I will tell the complete story of the day I was told I had cancer, but right now I want to focus on what God has done in my life thus far, and what he will continue to do throughout my life.

A few nights after I was diagnosed, I told Connor Lancaster that an immediate fire had been lit inside of me. that all of the sudden all of my walls had fallen, and that I would give anything to be placed on a crowded street screaming the beauties and the wonders that god had performed in my life. I had decided that from here on out, my life was a mission trip. That I would spend every day glorifying him with everything I had. With my words, my attitude, my thoughts, and my heart. That if you wrote me a sermon, I would stand up in front of a massive crowd of people and preach it for the world to hear that my god is awesome, my god is love, and my god will never leave me. I knew the night I was diagnosed that I had no other option. I wasn’t going to give up, and I wasn’t going to back down. I would remain the strong person that I was before, but this time I would put my full and complete trust in the King who knows tomorrow. My prayer for every single person who reads this is that you too get to feel the Lord’s presence as much as I have in the last 20 days for at least just one minute of your life. I pray that you feel it in others: in their eyes and in their actions. I pray that you feel it in nature: in the way the stars shine at night and the rain falls from above. But, most of all, I pray that you feel it in yourself.

Breathe. Listen. Live.

2/12/2018 47 Comments

February 12th, 2018

Chapter eight

It’s gonna be a bright, sunshiny day.

Happy Monday! I am currently sitting in the back of a car that has carried me on and towards many adventures. Not just specifically this car, but “our car”. An invention used to allow people everywhere to travel almost anywhere they need to be. As I got in the car this morning, I likened my excitement of heading back to Texas Children’s to the equivalent of leaving for a new adventure. That feeling you get when you’re headed to the airport, about to hop on a plane headed to a new destination. It’s a nervous but hopeful feeling. Believe it or not, looking out the window of the car as we travel to Houston is just as exciting as it would be to gaze upon the clouds out an airplane window. This morning the sky is blue, the air is crisp, and the Lord is ever present in the rays of sunshine beaming down on the road set before me.

Want to hear something totally fun? A few days ago, an amazing company called “Jadelynn Brooke” contacted me with some of the sweetest and most energetic words I have heard throughout the beginning of this process. Being a total fan of their clothes and products, and already having owned some, I was completely shocked that such a big company would be contacting me regarding my story and my new reality. Jadelynn Brooke is a company founded by 3 sisters whose mission is to clearly make the Lord known, radiate happiness, and provide you with some cute stuff while you’re at it. this year their message for audiences to see is a campaign called “Girl on a Mission”. I was so thankful to receive multiple t-shirts for myself and my close friends as well as other merchandise to showcase this “Girl on a Mission” mentality. Jade, Lexi, and Brooke: If you’re reading this, please know that you already have been a huge part of my perspective on this whole journey. It is crazy who God puts in our lives when we need them most. I am proud to continue living as a “Girl on a Mission”.

Today is Day 8 of my First round of Chemotherapy. I will be receiving a new infusion through an IV and then hopefully headed home today after treatment. Recently, I have started to deal with a new muscular discomfort in my legs, probably an aftermath pain of my bone marrow biopsy. But, other than some acid reflux burns from my steroid, and the feeling in my legs…I have been pretty good.

If you couldn’t already tell, I have a huge passion for writing. Due to the fact that I will soon be in the middle of my 1st round of chemo, and hopefully laying low on a bunch of medical updates for a week or so, I would love to answer questions through my posts. I enjoy a good dance party (comment some good tunes), talking about musicals, and even hearing about new favorite foods (I am hungry all the time haha). I will happily tell you everything you’d want to know about those topics, but I would also love to chat about my faith, your faith, and just crazy life stuff. That being said, no question is too small. I am excited to share more about what makes Rylie, Rylie.

A little message to start off your week on the right foot: Live everyday to the fullest. We are not promised tomorrow, next week, or even the next hour. I encourage everyone to look for joy in the little things. I still feel as if my life has been flipped upside down, but trusting in the Lord’s plan for even the next minutes of my life is sometimes all I have to lean on.

I am not afraid. I was made for this. -Joan of Arc

2/9/2018 40 Comments

February 9th, 2018

Chapter seven

Oh, Texas Children’s.

What an impact this Medical Center has had on my life thus far. 3 weeks ago, I could have never imagined being admitted to such an astounding care facility in a matter of hours and suddenly beginning my journey as a cancer patient. Throughout my time at TCH, God has placed the perfect people in my life at the perfect moments. The coolest thing about that fact is through all the confusion of this whole situation, I somehow knew the Lord would provide who I needed, and when I needed them…even when I didn’t know they would soon cross my path.

My Child Life Specialist, Alyssa for example popped her head into my little room on the 9th floor my first day in the hospital. Her constant support through the placement of my PICC Line, and random moments of checking up on my parents and I made a huge difference in our transition to what life would look like for the next week. Another blessing from the last week have been the sweet people who devote their days and nights to the constant bed side care of each patient in the hospital. Oh my sweet nurses. For multiple days in a row I had two special people in my life for a short amount of time. I want to send a special message to Kate and Katie, both of whom were my day and night nurses during my first 3 days of chemotherapy. Thank y’all for showing nothing but love and support in the exact moments I needed it. It is absolutely crazy to see the new relationships that have formed in the short amount of time that I have been diagnosed. I am more than excited to build many more down the road.

Today, I am sitting in my bed, my room, and my house after having come home from Texas Children’s late last night. An unexpected 8 day trip to Houston, Texas has already changed my life for the better. I can honestly tell you in this moment I am at a loss for words just imagining the many more days of blessings that have been set before me. “Home” is a special word. I came to understand last night as I entered the doors of my home in Round Rock that there are forms of “Home” everywhere around us. Yes, it is wonderful to begin attempting to enter back into life in Round Rock, but Texas Children’s has quickly made an imprint on my heart. This is true due to the people who have been called to spend their days working towards healthier and happier moments for the patients and their families. I am looking forward to spending my days of treatment under the loving and consistent roof of such a special place.

Medical Update: I have come home from TCH with a full and complete plan for my personal Chemotherapy and treatment. Right now, the plan is for me to receive 5 rounds of treatment, each round lasting 3 weeks long. I will be receiving treatments in Houston during days 1, 2, 3, and 8 of each round. Individual infusions will take place on these days through the “Out Patient” clinic at TCH, while I will be continuing to keep up with multiple prescriptions at home. I ask for prayers in this area, given that I never I could have imagined being an 18 year old who would need to keep up with 4 to 5 prescriptions multiple times a day. I know all of this will eventually become my new normal, but it is a lot to grasp right now. This past Monday I had a Bone Marrow Biopsy of both the left and right sides of my pelvis. This was a new kind of pain for me, but the procedure was successful. I am ecstatic to announce that the biopsy has come back negative, and the cancer is not in my bone marrow!! It was wonderful to receive this news on a night in the hospital when my spirits were in the middle of a rough patch. On Wednesday I had my third Echocardiogram which has also shown even more improvement involving the fluid around my heart! Yesterday, before being discharged from the hospital, I had my PICC Line removed from my left arm where I had been receiving Chemo for round one. Before I begin round two in a few weeks I will have a Port placed for all treatments in the future. Wow! Thats a lot of information all wrapped up in a few sentences. I am looking forward to my upcoming treatment days and what life will look like for me in the next 5 months to come.

Lastly, I want to say Thank You. I have come to approach many new curves in my race of life, but each turn becomes a little more familiar and easier to drive on as the days progress. I send All my love to each and every person reading these words. Thank you for joining me on the road trip. Thank you for jamming along to the happy and sad songs, and sometimes the songs that simply leave us in awe of the crazy life we have the opportunity to live.

“Live. And Live Well. Breathe in and breathe deeply. be present. do not be past. do not be future. be now. On a crystal clear, breezy 70 degree day, roll down the windows and feel the wind against your skin. feel the warmth of the sun. if you’ve recently experienced loss, then grieve. and grieve well. at the table with friends and family, laugh. if you’re eating and laughing at the same time, then you might as well laugh until you puke. and if you eat, then smell. the aromas are not impediments to your day. and taste. taste every ounce of flavor. taste every ounce of friendship. taste every ounce of life. because it is most definitely a gift.” -Kyle Lake

2/7/2018 69 Comments

February 7th, 2018

Chapter Six

Round One of Chemotherapy.

Today is a new day.

I plan to write about my medical progress in a later post. I have felt called this morning to share the emotional journey of my last few days.

In all honesty, the last 60 hours have been some of the most challenging hours of my life. Through a sudden flood of pain, sadness, confusion, nausea, and uncertainty I had begun to doubt that all of this was even happening to someone like me? How could a “healthy” 18 year old girl who had been keeping up a normal routine just 3 weeks ago, now be lying in complete emotional and physical brokenness? I began for the first time to ask God, “why me?”. I have learned it is extremely difficult to turn to him in the moments when my head is aching, I can’t even make it to the bathroom on my own, or my stomach feels as if it could explode. A small reminder I have kept with me is that this is TEMPORARY. My sickness, this life, and all of ours lives here on Earth. This is not God’s final destination for any of us. He loves us so dearly and wants nothing more than for us to live eternally with him in Heaven.

As I lay and write these words on this gloomy Wednesday morning, I will confess once again that my last 60 hours have been the most testing to my faith in all my life. But, oh what a feeling it is to wake up and know that today is a new day. Today, this week, and this month will bring new challenges and experiences but I know He will never leave me. A line from one of my favorite worship song states repeatedly, “Oh what a savior…wonderful Jesus.” What simple yet beautiful words. “Death could not hold you, you are victorious.” OH WHAT A SAVIOR!!! Oh what promises he gives us!!!! Lord may I praise you unconditionally, just as you love me. I have seen the mountains and valleys set before me. Hold my hand Lord.

Hold it tightly.

2/3/2018 56 Comments

February 3rd, 2018

Chapter five

Kindness. 17.

I have felt nothing but kindness since I entered the doors of this hospital. I have shared laughs with nurses and wonderful conversations with doctors that I know I will remember for the rest of my life. As I have traveled around this remarkable medical center for different tests and procedures, my Dad has taken pictures of the different room numbers that I have visited. A few of them being 123, 4, 5, 9, and 17. These may just appear as regular numbers, but I feel that each number has a story. I hope you’re up for some reading!

For this chapter I have decided to start with the last number, 17. Though this disease called Hodgkin’s Lymphoma was diagnosed in my body as an individual who had recently turned 18 and become an “adult”, I was still a 17 year old girl when I truly started developing the disease. This is both frightening and amazing to me. We have now learned that my body probably started developing Hodgkin’s as long as 6 months ago. I can honestly say now that my strength through those months were none other than the Lord’s presence in my life. My senior year thus far at Round Rock has been nothing but amazing. I am thankful that I was given the opportunity to build new relationships, participate in senior school events, and carry on just as I always have. My life from here on out is going to be completely different, both during the process of Chemotherapy and after treatments are over. But that doesn’t mean the Rylie that I’ve always been has gone anywhere. She is here, she is strong, and she is ready for 17 and many more beautiful years of adventuring, loving others, and living life for the creator of all things.

A little side note: Throughout this whole process, my friends have been unbelievable. If you’re reading this you know who your are. Wow. Thank you for being there for my family during this time while we are away. Thank you for thoughtfully building the community of Round Rock and beyond into this massive team of people who are fighting alongside me. Thank you for showing me the importance of our earthly relationships and the beauty of true love. This next phrase is used a lot when we talk about those that we love, and those that love us. But, I cannot say it enough about some of my most favorite people on Earth. God knew what he was doing when he put y’all in my life. I love all of you more than you will ever know, and I only hope one day that I can return the amount of world changing love you have given me.

Speaking Medically: Today will be my third full day at Texas Children’s Hospital. After having my PICC Line placed on Thursday night, I have been receiving IV fluids to keep my body hydrated for the start of Chemotherapy. Starting Friday morning I got a CT scan to get a better picture of the anatomy of my cancer, Especially anything that may appear outside of the Lymph system. My mediastinal mass is not causing problems…I have continued to breathe normally. Although I do have some fluid around my heart, it is not affecting my heart’s normal function. I will be getting another Echocardiogram this afternoon to ensure that the function of my heart is stable. Last night Dr. Dreyer visited with my parents and I about my future Chemotherapy schedule. It feels good to know what lies ahead, and I am excited to “hit the ground running” with my treatments. In addition, on Monday I will have surgery to get a bone marrow biopsy, so that the doctors have a baseline of my bone marrow involvement. My chemo treatments may begin as early as tonight, depending on the results of the Echo.

Throw Kindness like Confetti today.

Love, Rye

2/1/2018 120 Comments

february 1st, 2018

Chapter four

the best word to describe the last 24 hours would be "progress".

Yesterday afternoon after receiving my x-rays from that morning, texas children's discovered a mediastinal mass in my chest, meaning a mass in front of my heart. at 5:02 pm My mom, dad, and I unexpectedly headed to houston due to the urgency of my case regarding the Mass. Once we reached houston, we spent some time in the Er. during this time, I was both anxious and immediately cared for. We have met countless wonderful doctors, nurses, Fellows, and residents in just one day and I am so excited to continue to meet more. After a full night of more chest x-rays and labs, I was moved into a room on the oncology floor of the hospital. my night nurse danielle gave us a tour of the floor and talked through some information with us before getting to fall asleep around 2:30 am. Those 6 hours were probably some of the hardest and most challenging hours of this journey so far.

I am happy to say that I am currently sitting in my comfy hospital bed after being started on a steroid medication called prednisone. my medical activities today have included some IV action, an echocardiogram (an ultrasound of my heart), preliminary tests for my breathing, and finally a PICC line where I will now be receiving all my medicines from.

I want to thank everyone of you on the other side of this screen. Thank you for praying. Thank you for joining the team. thank you for your encouraging words. But most of all, thank you for surrounding me in a blanket of love that I feel everywhere I go. I feel it as I walk down the hallways of the hospital, and I feel it during the doubts and little moments of new medical experiences. Your words of kindness are making Team rye stronger.

#siccancer

1/31/2018 70 Comments

january 31st, 2018

Chapter three

Wow. Has it really been nearly a week since my diagnosis? The last week of my life has felt as if it were months long. I have learned so much about myself, my family, my friends, and what it truly means to be a daughter of the King.

My parents and I walked out of the hospital on Tuesday afternoon completely devastated and broken. Never in my entire life had I ever felt so lost. But after many tears, my two biggest fans (the great Jay and Heidi York) began fighting for me down here on Earth, just as much as I know all of your prayers are fighting for me at the gates of Heaven. We began the process of determining where I would start receiving care, and what the next few days would look like. I am beyond grateful that my Mom’s cousin Kim is married to Dr. Steve Patierno, Deputy Director of the Duke Cancer Institute. Steve began working for us immediately to determine where I would be receiving further medical care. In addition, my parent’s friend, Dr. Jenny Jacomides (Go Stingrays!) was consulting with us about why she felt it was important for me to be seeking out care at a facility with a seasoned Pediatric Oncology team. I am so grateful for both of them, as they fought along side my parents and I during the couple hours after receiving specific news regarding my diagnosis. I am happy to say I will be receiving care at Texas Children’s Hospital in Houston starting Friday morning at 8:45 am.

Someone else who has been extremely present in the intense times of last Thursday night and yesterday afternoon, is my Youth Minister and my friend Brett Levy. Brett was the first person on the scene, both times, when bad news was delivered. Outside of my family, he is probably the one to have seen me at my most broken point. The levy family opened their home to the community last night, to host a prayer night for me after we had received the new news of my diagnosis. I cannot thank them enough for loving me so well.

Speaking Medically: In order for my care at Texas Children’s to begin I will have multiple tests done on my heart and lungs, followed by a procedure to surgically implant my Port, where I will be receiving Chemotherapy. During this procedure, the team of doctors will (hopefully) be conducting a Bilateral Bone Marrow Biopsy from both the left and right side of my Pelvis while I am under anesthesia. Some of these big words may seem scary, but I am anxious to start treatments and kick this thing in the butt. Though my situation is said to be “extremely advanced”, my body is otherwise strong and has been fighting this fight for a long time.

Thank you all for the continued prayers during the beginning of this process. I am looking forward to the opportunities that God has already presented to me, and will place in my path through the days, weeks, and months to come. I will share with you all something that I shared with a friend last night: This whole story, my whole story, is only the beginning of the lifelong “mission trip” that I have begun to embark on. Lord, lead me to those who are in need of encouragement and love. I pray that my story impacts people in ways that I may never come to know.

Texas Children’s here I come.