Good Morning from Texas Children’s!
Today marks my first day of my journey here at the hospital. After getting my PICC line placed on Thursday, I spent my last night outside of the hospital and prepared to sign my Transplant consent forms to officially get admitted around 7:00 last night.
This is my first morning here in my official transplant room. Starting today through Thursday I will receive a combination of 5 chemotherapy drugs, multiple times a day. This will be the most intense grouping of chemo I have ever received. The side effects of these drugs can include nausea, vomiting, flu-like symptoms, fevers, fatigue, hair loss, and some other minor symptoms. During this time my immune system will be extremely compromised. Everything here on the Bone Marrow floor is very specific and cautious when it comes to cleanliness and hygiene so that every patient is kept as safe as possible at all times. After the 6 days of chemo has finished I will be given my healthy stem cells, from my harvest, back on August 9th! So when is the big big day? AUGUST 9TH! Before then and after then my body will be in both prep mode and then recovery mode.
Though I know these next two weeks are probably going to be the hardest part about this process, I am trusting that everything will happen as it is supposed to. Please pray that my body responds to the chemo in an orderly manner and that I am able to properly respond to the transplant when my blood count and immune system are rebuilding themselves.
A few nights before traveling to Houston, I listened to a song by Hillsong Young & Free called P E A C E. Some of the lyrics are “I will stand tall on each promise you make…let the rest fade away. There’s a peace far beyond all understanding. May it ever set my heart at ease. Dare anxiety come, I remember that peace is a promise you keep. Peace is a promise you keep.” "You are peace to my restless soul...peace when my fear takes hold...peace to the anxious heart...peace when I lose control."
I can honestly say that I am entering into this process with a presence of overwhelming peace. I know that this would not at all be possible without calling on the Lord in times of struggle and being vulnerable enough to ask for prayer in the areas of my concern. But in the moments of insane courage and extreme weakness, I have surrendered to his plan and his purpose. Since returning home from Ozark, every day when I wake up, I’ve repeated the phrase, “Lord your will and not my own.” May these words ever set your heart & my heart at ease. God has done the things he’s done and made the promise he’s made in order for us, his beloved children, to experience the joy of peace. Sometimes surrendering to His plan can be as simple as repeating seven words to yourself as you open your eyes each morning.
Am I scared? Am I confused? Am I nervous? The answer to all of these questions are without a doubt...YES! But in the end God is great, mighty, and loving. We praise and belong to a miracle working God. I will proclaim this message forever.
Standing tall on each promise He makes.
August 9th, looking forward to ya.
Happy Monday, friends!
I wanted to write a post explaining what I believe the next two months of my life will look like, and answer some commonly asked questions as of recently. As many of you know, I was diagnosed as ‘relapsed’ for the second time this past May. My doctors had to begin communicating that the next step in the cancer process for me would have to equal bone marrow transplant. That does not necessarily mean that the Chemo my first two times around did not work. Those drugs were successful in getting the cancer to be gone for small periods of time, but not for the rest of my life…so transplant it is.
My team of doctors prepared for me to complete two to three more rounds of chemotherapy before starting my transplant. In order to have this bone marrow transplant, my PET scan would need to read as clear. Naturally, I completed two more rounds of chemotherapy and prepared for scans, praying that they would be clear.
When I returned from Camp Ozark in early July I traveled to Houston for these scans and we learned there was suspicious activity in random parts of my body where original disease had never taken place before…this was odd and unsettling. I prayed that these random spots were a reaction to my body fighting off an illness or exhaustion of some sort. I was once again put on the schedule for an additional round of chemo before scheduling another PET scan for me at the end of this month.
Accompanied by a massive amount of prayer, I entered the PET scan room this past Tuesday wishing eternally for a clear read. Yes, clear scans would mean transplant but transplant means my next step to being done with this disease for the rest of my life. As announced on a recent social media post, this PET scan was in fact CLEAR! Therefore, we will move forward with my Autologous Bone Barrow Transplant.
Why am I having a transplant if my scans have once again read as clear? I will have a bone marrow transplant because up to this point, chemotherapy and radiation cannot quite do the trick of ridding me of cancer AND making it stay away. We want the thing that is going to make the Cancer GO AWAY forever, and my prayer is that this transplant will do just that.
What is an Autologous Transplant? An Autologous Bone Marrow Transplant is a transplant created from MY healthy stem cells located in my bone marrow. Before heading to camp in May I had my second bilateral bone marrow biopsy, taken from both of my hip bones, to see if the cancer had ever gotten to my bone marrow. We learned that my bone marrow was still negative of cancer, therefore I was eligible to be my own bone marrow donor?! Kind of crazy & cool right!! On July 17-19 I completed Stem Cell Pheresis. A catheter was placed in my neck where blood exited and enter my body through multiple tubes. As the blood left my body, it entered a machine that spins the blood at a very fast rate in order to create level of differentiation based on the density of the blood. Healthy stem cell separate themselves in this process and those blood cells are collected in a bag above me while the rest of my blood is sent through another tube back into my body with some additional calcium. I completed this process for two days, six hours straight on each day. This was not enjoyable and very claustrophobic, but it has been completed now and I am thankful that I have been diagnosed in a time when something like this is even a possibility.
What will the Bone Marrow Transplant look like? To be honest, I am not completely sure. My official admittance date at Texas Children’s will be August 2nd, this coming Friday! I know this may sound unusual to most people who read this, but I am looking forward to getting to the hospital and starting this process. It will be an adventure needless to say, but life is an adventure anyway…why not add some more craziness to it.
On August 1st I will have my PICC line placed which is where I will receive everything entering and exiting my body from the start of the transplant to the end. Similar to a port, but a PICC line can be removed easier than a port. Upon arriving at the hospital I will start a sequence of chemotherapy that will ‘kill’ my immune system and lower my white blood cell count to a very low number (basically ‘cleaning’ and ‘clearing’ my body of all that bad stuff). Leaving my blood count at probably the lowest it has been up to this point. As I understand it, during that process is when I will be given back my healthy stem cells. These cells will work to rejuvenate my immune system and replace all the bad cells with healthy cells. There is a possibility to that I could lose my hair again while I’m in the hospital. This is not exactly something I’m looking forward to, but it does mean getting to wear my wig, Contessa (she’s the best), again for the second time around. We have been told to prepare for this process to take up to 30 days…meaning my fall semester at Baylor is going to look a little different than the normal student, but that is another conversation for another time. Once the transplant has been completed, I will stay in Houston (but out of the hospital) for one to two weeks until my blood count has fully recovered. After that…I am good to go!
As many of you know, I am very open and honest with everything that has to do with my diagnosis. If you have any other questions, I would love to answer them. I will continue to write as much as possible while I’m in the hospital and maybe some of my posts can simply be answering some questions you might have! Texas Children’s, here I come!
With love, Rye
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.
Cancer and College
Author: Rylie York