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7/29/2019 14 Comments

Got questions? I've got answers!

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
14 Comments
Cherie Solheim
7/29/2019 09:41:25 am

Rylie, I will continue praying fervently for you!
During your procedure this week, please remember how much you are loved and valued by so many people but much more so by your loving, heavenly Father!
Here are two perfect verses to memorize and to keep in mind:
Proverbs 3:5-6
Isaiah 41:10

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Chris Moore
7/29/2019 10:28:04 am

Hi Rylie. I’m Cherie and Amy’s aunt and am praying for your full and complete recovery. Your inclusion by explanation of your treatment plan and progress to those that love and support you is so appreciated. Affectionately, Chris.

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Susan Bolton
7/29/2019 11:05:13 am

I am so proud of you and your spirit! You explain things that nobody your age should have to know about, but you do it with a positive attitude. I am praying for you and look forward to hearing that the cancer is gone forever.

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Debra ”Debs” Craig
7/29/2019 11:05:17 am

Rylie you amaze me every day. You are a testimony on how to handle a cancer diagnosis & treatment. I'm so happy you are getting to do this transplant and eradicate this cancer once and for all. I pray for you daily and think of you often. Baylor will be waiting for you when this is all over with - please just concentrate on getting better and healthy again. If you need anything please don't hesitate to ask. I love you sweet & brave girl. Debs

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Ann Chenault
7/29/2019 07:42:04 pm

Rylie
Please know that my entire family & friends are praying for you! We all love you & know God has a wonderful plan for you ! You continue to amaze me!

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Stephanie Vanskike
7/29/2019 09:31:28 pm

Your bravery & honesty continue to amaze me. You’re in my thoughts & prayers often. Not that it’s the point if your blog, but so many times, either your blog or your mom’s posts have helped me to remember what’s the big picture...what’s most important? For that I’m grateful. 🙏❤️🙏

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Martha Robinson
7/29/2019 10:15:36 pm

Admire you. Your strength. Your courage. Praying for ALL! Love you Rylie.

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Dortha Forbes
7/30/2019 04:33:19 am

As always Rylie, you are our consistent inspiration! We do not need to say, "depend on the Lord"! You have been there all the time and we are so grateful you share that hope with all of us! Our prayers continue for you and the family!

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Julia R Shaver
7/30/2019 09:20:10 am

Rylie (and all of family), I have been keeping up with your RECOVERY since day one. It seems to me that God's plans for us are quite a mystery throughout life and as I've followed this journey with you His plan for you must be for an incredible life ahead. How exciting for you!!! None of us know all you have or will experience in the healing process, but look at all the hundreds of thousands you has touched through the last couple of years. I, as all the rest of folks who know and love you and your family, are anxiously awaiting your future and all God holds for you. God is continuing to answer our prayers for you and we know His Love and Power over our lives. I know I don't have to suggest that you continue focusing on the positives and trusting in God's Will to be done because you've been the leader of the pack and have been our encourager and uplifter. Asking the Lord to speed your total recovery and cover your body with His Mighty healing powers and protective hands. Love to all, Julia & Billy Ed

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Pam Sondrol
8/1/2019 11:58:24 am

Rylie, my 17 year old granddaughter is battling this same cancer for a 2nd time. She was diagnosed at 14, this past Feb. she was 2 years cancer free, and in May diagnosed again.... We lived in Pflugerville when originally diagnosed and she was treated at Dell Children’s... She now receiving treatment at Medical City Children’s since we now live in Gladewater... I just wanted you to know you are such an inspiration, I LOVE how your FAITH is so strong. Kenzie, too has a great relationship with Our Lord, and knows HE’S got this!!! If you’d like to know more about her, visit TeamKenzie on FB.. God Bless You and I will be following you..

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Janice Bryant
8/2/2019 07:16:02 am

I recently heard your unbelievable testimony from my daughter, Carrie who u spent the night with in a Sherman. It never ceases to amaze me how God puts people in your lives. Praying for you as you go through this process. I have a dear friend of many years who has been going thru some of this. Another friend went thru some of this and God has blessed him with success of this illness. There are others who are facing trials at this time. Praying for you, your doctors and this procedure . Stay strong and you are not alone, our loving Lord is with you

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Pop Pop
8/3/2019 01:35:05 pm

Sweet granddaughter. You have impressed me since January 20, 2000.....special. This is no exception. Praying all day everyday for the CURE.....love you with all my heart.....Pop Pop

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Sharon Foster
8/3/2019 09:16:02 pm

You are such a sweet and brave and inspiring young woman, and my family and I have been and will continue praying for you! Thank you for your wonderful updates in your blog. I look forward to every one! Much love to you, one Baylor Bear to another! 💚💛💚

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Brandon Jackson link
10/6/2022 03:24:51 pm

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