RYLIE'S NEXT CHAPTER - Blog

5/15/2018 25 Comments

MAy 18th, 2018

Chapter nineteen

The Light at the End

There’s something about endings. Whether it’s the end of a book, the end of a moment, or the end of a chapter in life. This coming Thursday I will be headed back to Texas Children’s Hospital for my final day of chemotherapy. What a special sentence.

Things to celebrate from the last few weeks: A little over two weeks ago I was crowned Prom Queen at my High School’s Prom. Needless to say, I felt like a Princess. The constant support from my school and my peers has been unbelievable. If you are a student at Round Rock High School and I haven’t had the chance to say “hi” or “thank you” for your support in the last few months, I want to say it now. Tye, thank you for making dancing in front of hundreds of people not too scary and so fun. It was a night I will remember forever. Two weekends ago I had the opportunity to serve with my church in the community at a weekend event we call Collide Impact. We started off the weekend with a night out at the Round Rock Express Baseball Game where I had the honor of throwing out the first pitch! The whole night was dedicated to cancer awareness and everyone was encouraged to show their support for those fighting cancer, those who have survived cancer, and the amazing doctors, nurses, and people who have dedicated their life to cancer research and oncology. A special thank you to the Almendarez family for their constant support and love through this time. Team Jana Forever. Last Wednesday night, I participated in my last ever high school Choir concert. In the Dragon Choir family, we have a special tradition where the President of the Choir gets to direct the last song of the concert titled “Not One Sparrow”. Some of the lyrics of the song are “Not one sparrow is forgotten....even the raven, God will feed. And the lily of the valley from his bounty hath it’s need.” We sing the song to honor the seniors that are graduating and moving on to new things. I am so thankful that I had the opportunity to direct this song in front of my choir’s varsity ensembles and alumni members. It was a special, tear stained cheeks moment.

A medical update: As far as my health, activity, and spirit, things are going wonderfully. With each treatment I feel I have grown stronger as a girl with cancer and just as Rylie. I have been responding to my latest treatments with minimal side affects (nothing out of the ordinary) and I’m looking forward to my official last day of Chemo this coming Thursday. A little over a month ago, after receiving the results of my scans after round two, the doctors discovered a centimeter by centimeter mass located on my thyroid. We were encouraged that this was not a serious matter, but that we would follow up with further studies to make sure that the function of my thyroid was remaining normal. After completing an ultrasound and blood work tests on my thyroid, they have determined my function to be normal. Tomorrow morning I am scheduled to have a needle biopsy done on my thyroid to test for any cancerous tissue. We know that if this mass is considered cancer, the area is not active due to the results of my last scans. I will be going into the biopsy tomorrow with my head held high and nerves low. I am not concerned about this little speed bump in the road. My final scans are scheduled for May 29th!! These scans will follow the completion of my fifth round of chemo and will determine further plans for radiation. We have already learned some exciting news regarding radiation that was determined by my previous scans, but we will know all details for sure after the completion of Round 5 and my final scans.

This journey has been an exciting and scary time. I remain at a loss for words when it comes to the many emotions I have experienced over the last couple of months. I feel that I will never be able to truly express how much Cancer has changed my life for the better. I am thankful for this small chapter that I have lived through in the novel of my life.

A few weeks ago I applied for a Cancer related scholarship whose essay question involved explaining the lessons I have learned through discovering my diagnosis and the new goals I have set for myself as a young adult experiencing cancer. The following words were a portion of my answer: “As a teenage girl with cancer, I have been forced to learn a valuable lesson that I believe most people never truly grasp. Cancer brings confusion and concern. Cancer uproots our most inward emotions and pushes us into a reality that is experienced by many and feared by most. Through having cancer, I have learned the value of patience. I have learned what it means to set goals and have plans, but to be prepared for all of my plans made to be washed away in an instant. A personal goal I have for myself in the future is to take full advantage of every moment I am offered. I hope to take in every sunrise and every “windows rolled down hair (or bald head) blowing in the wind” moment. I have gained a new perspective on what it means to give everything I have to everything I do. I am stronger because of cancer. And yes, sometimes moments are stolen from us and goals aren’t met...but I am looking forward to the day that I get to share my story with the little girl sitting across from me who was recently diagnosed with this scary disease and has no idea what comes next. I’m looking forward to hearing about other people’s stories and the lessons they have learned. I look forward to making an impact on a specific community that has invited me in with open and loving arms. I am looking forward to meeting goals and making new ones, because cancer cannot stop me from pursuing a life for Christ and focusing my days ahead on loving others and loving Him.”

Here’s to an end. Not the end, of course…but an ending of a moment. Here’s to the end of a chapter that I never saw coming. Here’s to the light that has only grown stronger. As I complete the last few pages to this chapter, I remind myself of an important lesson I have learned in the now. My life is in His hands. My God holds all things. No matter how many times I wish that I had control, I have been forced to trust him in knowing that he is working for the goodness of his love through all things. I have learned that everyone has a story and that the world is loud. There are times when we must simply sit in the silence in order to fully understand God’s plan. I now consider the last four months of my life to be the loudest lived, for they will remain some of the biggest struggles I will ever have to endure. But, I know now that I could not have made it through this chapter without simply drowning out the overwhelming noise and chaos. I know now that the Lord’s voice and plan are ever present in our daily walk. All he asks of us is to sit, quietly, and listen.

4/18/2018 15 Comments

April 18th, 2018

Chapter eighteen

A while back I promised to write a whole post devoted to the day I was diagnosed. My flip day. My hard-to-breathe, remember-for-the-rest-of-my-life day. In honor of being back in Houston for the eighth time and for finally coming to peace with this chapter of my life, here is my cancer day. The day that would lead me into a new family. A day that would grant me new supporters, new friends, and new soldiers, fighting right alongside me.

So here goes...January 25th, 2018. 4:43 pm.

The day started out like any other day. I woke up that Thursday morning feeling especially high on life. The wednesday night before held many little blessings that the Lord brought me to recognize as I laid in bed before hearing news that would change everything. As I have said before, the week of my diagnosis was a “jesus working” week. but, it wasn’t until that Thursday night that I completely understood why God had wanted so badly for me to feel his presence in the moments that I danced around with friends, laughed in the hallway with a teacher, and stood on stage in front of a congregation of young teenagers as a representation of the Lord’s love for us...even for just a moment.

On the morning of January 25th I headed to school around 8:45 am with my brother Preston, and we parted our separate ways as I went to Choir and he went along to his class. In all honesty, I don’t remember a lot of details about that day other than that I was happy. I wasn’t concerned about my lymph node biopsy and I wasn’t thinking about the pains in my abdomen. I was focused on day 5 of being 18 years old and the importance of stopping to enjoy the pink flowers scattered across from my newly painted parking spot that I had recently finished just about two weeks before. I went to my classes that day and went to lunch with friends. I spent time with my PALS and worried about passing yet another Stat test (raise your hand if this is you at the end of every unit in any class haha). That Thursday was an especially long day at school because it was a day that I didn’t have an off-period, meaning I got out of school at the normal time (4:20pm), instead of on my early off days at 2:30pm. Little did I know, those two extra hours meant my dad beating me home. Those two extra hours meant my parents getting the opportunity to cry in each other’s arms before having to hold me as I sat staring straight ahead. I left school with my windows down, music playing loud, and pulled into my driveway around 4:40pm to see both my parents outside looking oddly uncomfortable and upset. I soon realized as I pulled my car past them that something was wrong. I didn’t know in that moment that it was because of my biopsy results. But as soon as my mom was standing at my car window before I even had the chance to open my door, I knew it was bad. I opened my door to a shaking hand and both my parent’s tear-covered faces. All I remember my mom saying was “you’re going to be okay. we’re going to beat this”. and then the word no one ever wants to hear: “it’s cancer”. the c word. “lymphoma”. Hodgkin’s lymphoma. I couldn’t do anything but stare at my lap and say nothing. Talk about a life changing moment in a matter of seconds. We talked a little more about the details as I sat there and sobbed, verbally expressing my “what the hell” statements of “why me” and “how”.

Mom slowly backed away as my dad explained what it meant to have lymphoma and what the next steps might be for me. I just cried. He asked if I wanted to step out of the car and I’m pretty sure I just sat there for 15 minutes or so. Not being able to move and even process the moment in the first place. When I finally got out of the car I couldn’t walk. It wasn’t even like lymphoma was keeping me from moving. It was the shock of knowing that things would be different, and the feeling of a stomach flipped upside down. I made it into the house eventually and crawled into a corner in our living room as I attempted to process the whole situation. I can honestly say that in that moment we were lost and confused. We had no idea what the next steps would be, but that period of grey did not last long. The next few hours of that night brought overwhelming feelings of love and support. We immediately had people of all ages rallying around us and comforting us. I have never felt so loved.

When I think back to that night I can’t help but be thankful for life and the people who continue to hold me in their arms. When I first got to Texas Children’s, one of my nurses explained that this whole journey would feel like a roller coaster in the beginning. And let me tell you, it was been a scary one. But as I sit here in the exam room on day 8 of my 4th round of chemo, I cannot imagine my friend cancer NOT having come into my life. I can’t imagine having not walked through the gates of my “Cancer Disney World” to get on this roller coaster called Hodgkin’s Lymphoma. Believe it or not, I can confidently say that I cannot imagine my life without cancer.

I know that January 25th changed my life forever and I’m dang glad it did.

4/4/2018 22 Comments

April 4th, 2018

Chapter seventeen

Inside Out

Lying in bed the night of March 29th, I was having trouble focusing on the morning. Focusing on that “12 hours later” period where I knew I would feel somewhat back to normal, and I could finally breathe without getting a throbbing pain in my chest, or walk without my legs giving way from under me. As I continue this treatment process, I have learned what methods work for me, what methods don’t work for me, and how my body will react to different medicines and scenarios. I have learned that the pain is temporary. I am confident in knowing that just as the Lord commands the sun to rise each morning, he has equipped my body with the strength and endurance to continue fighting this disease.

This past Thursday (Round 3 Day 8), I headed to Houston to finish off Round 3, see Dr. Dreyer’s smiling face, and face a new challenge. On the 8th day of each round, I receive two different infusions that both have pretty immediate side effects. One is Vincristine, which I also receive on the first day of each round. Vincristine effects my joints and causes a good amount of muscular pain. In the beginning of this process, Vincristine only caused me to experience some bad pains in my jaw, but this past time, I started having some bad leg pains and couldn’t walk around at a normal speed, let along stand up for very long at all. The other drug I get on my 8th day is called Bleomycin. Bleo and I, man…we had some struggles. Normally, Bleo is a “fast reaction” drug, meaning if you are going to react to it, your reaction will occur within about 2-4 hours of your infusion time. The first couple times I received Bleo I did not have any awful reactions, but this past Thursday, I began to understand what it means to feel the wrath of Bleomycin. About 2 hours in, I began to have an awful headache and slowly developed a throbbing pain in my chest. I was already experiencing some chest pains from earlier in the day because my Port Access didn’t go very well, but regardless…this new pain was unlike any pain I had ever felt in my life. Bleomycin is supposed to cause a spike in fever and trouble breathing. I have decided that the reason my chest hurt so bad for that 8 hour period was because the drug was attempting to attack my lungs, causing them to stop working, and my lungs simply responded by saying “Oh heck no. We’re not gonna stop that inhale, exhale process. Bleomycin’s got nothing on us.” So my wonderful, beautiful lungs continued to work hard, harder than they should have to, which made my chest throb uncontrollably to the rhythm of my heart beat.

I told someone last week that in those moments when I know my body is “under attack”, I wish I could individually talk to my organs and tell them “good job”. Tell them to keep fighting, and maybe even give them a high five or a hug, as if they were a person. Talking to my organs makes me think of the Disney movie “Inside Out”, where each emotion inside the little girl has a personality and a voice. Ironically, the little girl in that movie is named Riley. Yes, spelled differently than how I spell my name, but still pretty cool. I remember when that movie first came out, my mom and I thought it was so weird to hear my name said out loud on a popular Disney film because the name “Rylie” (however you spell it), just wasn’t that popular. Maybe the little girl was given the same name as me so that I would have the ability to imagine myself communicating with my organs as they lead the fight in this battle. It’s silly to think about stuff like that, but I can’t help but be thankful for something as small as the name of a character in a movie.

We’re normally too busy going about our business to stop and think about how amazing the human body is. How strong we are, and how beautifully we are crafted together to form something incredible. With that being said, I’d like to send a little message to the organs that continue to amaze me every day. Hugs to my Heart. Smiles to my Lungs. High five to my Legs (or just all of my muscular strength in general). Hang in there Stomach. And though this is not an organ, keep shining head. Bald is fun.

From the inside out and the outside in,
Rylie Elizabeth

3/30/2018 9 Comments

March 30th, 2018

Chapter sixteen

Connor Lancaster

As many of you know, this guy is special to me and he has been for a long long time. Connor, I can’t help but travel back in my mind to the early morning chats and hidden glances of California when I stare into your face. You are extraordinary. I’m going to spend a little time bragging about how much I love this guy. If all this lovey dovey stuff isn’t your thing, feel free to keep scrollin’ my friend. But if it is, man...allow me to share a few reasons why I think our love story is one that deserves to be told for many many years to come. Connor Lancaster loves me with the power and the strength that I know God, my father in heaven, loves me with. He smiles at me when I say stupid things, speaks my language, and fights for me in the moments when my words just don’t quite make sense. He is so wise. He speaks only when he needs to, and he helps me understand what it’s like to be confident in my faith and my spiritual path. He is his own person, and never completes any task in hopes that it will benefit only him. He is selfless. I believe that God probably smiles down at us when we, his children, do silly things. I know that The Lord holds my hand when I cry and the chemo infested tears roll down my face, just as Connor does here on our temporary home we call Earth. But dang. Connor Lancaster is a beautiful, and small representation to me of what it would be like to be held by The King. To be assured that there was life beyond this place we call home. To know a little glimpse of what standing at the gates of heaven will look like for me one day, and for all of my fellow brothers and sisters in Christ. We have our struggles, and we’ve also had plenty moments of weakness accompanied with regret. But, through this whole season of friendship and love I have learned that God placed Connor Lancaster in my life for a HUGE reason. & that reason was to be healed and loved with The Lord’s physical hands, through him, until I alas come face to face with God at the pearly white gates of Heaven. In this moment, I would like to give a little shoutout to my friend Cancer. Stupid Cancer. Nobody wanted you and no one will ever want you. But let me tell you, Cancer, you sure put things into perspective. You remind me there is so much more to life than stupid arguments and moments of stubbornness. Now sitting here nearly 3 months later, I will say that I cannot imagine my life without Cancer. & I also cannot imagine my life without Connor. This was God’s plan all along, Connor was God’s plan all along, and Cancer will continue to work miracles in my life for a long time to come.

So there you have it, my favorite love story. I hope you come to realize that I just talked about two different love stories, and combined them into one to make my own. One being my relationship with Connor Lancaster, that I look forward to growing through every single day, and the other being my relationship with the Lord, as he reveals his love for me through the hardships and the individuals around me. Take a moment to remind yourself that YOU are loved by the CREATOR. THE CREATOR OF ALL THINGS. God loves you every single day that you wake up and for the rest of time. He knows you are the coolest ever. Thank you for allowing me your time, and for letting me share.

What’s your love story? And by ‘love story’ I will always mean a description of the ways you might feel the Lord’s love, just in everyday life or in the moments we pray hardest to feel Him near.

p.s. I plan to blog another post soon with a medical update, but for now I thought a little story would be nice.

9 Comments

3/21/2018 90 Comments

March 21st, 2018

Chapter Fifteen

My International Day of Happiness

March 20th is known as the International Day of Happiness. Though it is now March 21st, I was scanned on March 20th to receive news this morning that is more than just happy news! It is praise Jesus news! Jump around and dance news! Read on for some exciting reasons to walk outside and say to yourself, “Today is a good and beautiful day.”

there are times when I question the Lord’s presence but, it is in the moments where I lay still on the moving table of a CT or PET scan, that I know he is with me. I know he is with me as the contrast from a CT scan rushes through my body, giving off a warm and comforting feeling. I know he is with me as I sit across from Dr. Dreyer and listen to her talk about her passion for my story and my life, not just my cancer and my sickness. I know he is with me as I tap my fingers slowly on the side of my leg during the loud ringing that occurs during my scans. 13 seconds. 13 seconds until the ringing stops and my body inches forward to a new spot, scanning a new area, providing a new moment of relief and moving me towards that moment where I am told that the CT scan shows a decrease in all tumors. That’s right friends!! A decrease in all tumors! Take that, cancer.

Another HUGE and I mean H U G E victory to celebrate: I have just received news from my PET scan reading that all remaining tumor is dead (that’s right, dead!!!!!!!) except for a small portion in my lower neck. Pet scans inform us whether the tumors still present are
Active Tumors or dead Tumors. Dr. Dreyer says, "this news is truly amazing and remarkable. Way more progress than [she] could have expected." I cried many happy tears. All I can say is that the Lord is good. The power of prayer is good. Today is good.

Some of you may be asking what all of this means. We have learned from my CT scan that all tumors have decreased in size. We know that all remaining tumor tissue is dead except for a small part of my lower neck/upper clavicle area. The remaining (dead) tumor tissue in my chest and abdomen will continue to diminish in size over time. We also learned that the Fluid around my heart and lungs is completely gone. My five rounds of treatment will continue as planned, and I am excited to see the progress my body will make in the months to come.

God is working in all of this. I feel him in everything. I cannot thank you enough for the continued prayers and support.

The fight is not over, but I am one giant step closer to the end of this chapter.

3/10/2018 29 Comments

MArch 10th, 2018

Chapter fourteen

Long time, no blog!

It’s been a crazy two weeks. I am currently sitting in my favorite “writing” chair in my living room, happy to be feeling LOADS better than I have been for the last 12 days. After my first few treatment days of Round 2 (an updated and stronger amount of Chemo than before), I was nervous for some new side effects and the way my body was going to handle the new, “first time” infusion. When I returned home from Day 3 of treatment, I was yet again bombarded with the large amount of medication that I am responsible for taking during the first week of every round. For the last week I have continued to have non-stop stomach pains, bad acid reflux, and a constant headache. My sleeping pattern has been pretty irregular, but it is improving as the days go on. I officially have a Port, and have now gotten it accessed twice. Something exciting!! I am scheduled for my second PET Scan and CT Scan on the 20th to find out how much improvement my body has made since my diagnosis. I am both nervous and excited for this news, and I’m looking forward to sharing the success of my treatment with everyone!

A little update on some things that have made me smile since I last posted:

I haven’t talked about my boyfriend Connor Lancaster on here a lot, but he deserves a ton of praise. He has been there for many high and many low moments of this whole journey, and he continues to do so with a smile on his face and a happy heart. We’ve been out on a few little dates since my diagnosis, trying to keep things simple, and he makes any time of the day even more special than the next. Thank you for being my shoulder to cry on and my person, I love you Connor Lancaster.

To My parents…oh my beautiful wonderful parents. Not only have Jay and Heidi York been my constant rocks through all of this, but they have continued to love me when I have my “hardest to deal with” moments, and thats saying a lot because I can get pretty crabby hehe. Mom & Dad, thank you for laughing with me. Together we have learned that some moments come where all you can do is simply laugh. Moments where there aren’t any more tears to cry, and the skies look a little brighter. Moments of love and support, moments that I will cherish forever. Jay & Heidi, I love you.

My friends have continued to be huge blessings in my life. Thank you for loving me so well.

To my community, thank you for your support and care. I wish that I could thank every single person who has had a hand in my journey, but I figure that my written words on here can do close to that.

I have been enjoying school through the HomeBound curriculum, and my teacher, Mrs. Wren is wonderful. Due to only having school twice a week for a few hours, I have had the opportunity to support my Choir at their UIL competition, which they rocked, and cheer on my sweet Water Polo team in their first tournament of the season which they named the “RYE Spring Opener”. Needless to say, life is good, and there are few days where you won’t find me with a smile on my face.

My love for Texas Children’s continues to grow. The hospital continues to feel more and more like home as I have memorized the hallways, elevator system, and the places where I receive my infusions. I cannot say enough about the staff. Dr. Dreyer continues to be a huge light in my life and one of my new favorite people. I found out last week that one of my night nurses from when I was in-patient, Kate McMordie, will be transferring to the clinic (where I receive my out-patient infusions) sometime in the next month. Y’all! Kate is such a joy, and I know that God placed her in my life with perfect timing on nights that I needed the reminder to keep fighting. God is shining through her, and I am excited to get to see her more often for the rest of my treatment process.

Yesterday morning I sent my brother Preston, Connor, my close friends Gracie, Kylee, Amy, and the rest of my youth group at First Baptist Georgetown off on their next greatest adventure. They will be serving in different parts of London for Spring Break and I am so proud of every single one of them. Please keep them in your prayers this week. I am excited to see what the Lord has in store for their hearts, and the hearts of those who call London home.

A little something to make you giggle: I have loved being bald. To some people, that statement might sound crazy, but there’s something about being able to stand in a room full of people and confidently say, “I have no hair, and I am perfectly fine with that.” Power to no hair.

All my love, Rye

2/28/2018 43 Comments

February 28th, 2018

Chapter Thirteen

Word of the Year: Joy

Not going to lie, today has been pretty crappy. Due to the introduction of some new infusions into Days 1, 2, and 3 of each round, I will now be receiving “the mother lode” of my specific Chemotherapy on Day 1. This includes two new drugs, and an addition of about 3 hours into my normal routine. Due to the delay of my Port placement surgery yesterday, we put off Day 1 of Round 2 until today. Dr. Dreyer had decided that the load probably would have been too much, and we simply didn’t have time to do 6 hours of chemo. I described to my Mom earlier that I felt like I had been hit by a truck. A feeling of utter exhaustion, post pain from my Port placement, and the scary sight of 4 or 5 tubes hooked up to me at a time, all sending fluids into my body. My mom and I will now be in Houston until Friday because of the push back, but if it keeps my body in the best shape possible, I don’t mind at all.

We’ve asked ourselves some questions today. Why now? Why me? Why cancer? It’s especially easy to ask the questions of “why” when you sit in the silence. in the somewhat empty hospital hallway with the occasional nurse passing by, and the constant noise of the infusion machine fixing you. pumping all of these liquids into your body, that a month ago, you never even knew existed. how could a machine that creates such simple small and quiet noises seem to captivate your thoughts and appear as loud as a train horn headed straight towards you? a train that you heard and saw in the distance but never thought it would make its way to you. these liquids that come in bags of different colors and different sizes that you know will both break down and build up your weak but mighty body all for a chance to ring the bell, say goodbye to machines, and finally....completely realize what God had in mind for your crazy story.

I wanted to share something special that I came to realize a day or two ago. My sweet friend Madalyn Georgens shared with her mom on Monday night, who shared with my mom, that Madalyn had written about me for an english assignment in school. The prompt for the assignment was whether or not we "choose" happiness. Madalyn, you are right. I am sad to be missing out on the end of my senior year, getting to walk from class to class across campus, and simply parking in the school parking lot. I miss seeing friendly faces and smiling at people in the hallway that I didn’t really know, but just thought they might have needed a “pick me up” in that moment. Thank you Madalyn for reminding me of a promise I made to myself at the beginning of 2018, and hadn’t come to realize until now that I had been working so hard to pursue. At the beginning of the semester, I completed an assignment in my English class that required me to decide what my “word of the year” would be. Not wanting to be lame or basic, I got on my phone to look up big and adventurous words that would set the path for how I was going to live my life in the year of 2018. I quickly decided to put my phone down, that I was being silly, and to just go with the word that my heart had chosen in the first place. I had chosen Joy. Madalyn’s words reminded me that though this whole situation is not what I had planned, and is not where I want to be...all I can do is choose joy. Choosing to be joyful in things does not mean that moments of defeat and weakness still don’t appear in our lives. Choosing joy means that we strive to look past the moments of sadness and towards the happiness. Towards those “ring the bell” moments and those moments of feeling successful. So today, Madalyn, and everyone reading, I ask that you choose joy.

“Having joy is not being happy all the time. Having joy is an underlying sense of knowing that the Lord holds us. Just we because we have moments where we cry, or feel frustrated or say “this sucks” Doesn’t mean we don’t continue to stand firm in our belief that our Joy comes from Him. I’ve got the joy, joy, joy, joy down in my heart.”
-Heidi York (My amazing, strong, and beautiful Mom)

2/26/2018 35 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 44 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 30 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.