Monday, August 22, 2016

Jordyn's Story

I have a habit (and I think we all do in one way or another), where I believe that nothing bad can happen to me. Somehow, somewhere deep down, I never believed terrible things could happen to me. Because they hadn’t. I have seen all my grandparents pass away, broken bones, gotten super sick, felt guilt, felt regret, gotten my heart broken, struggled with depression, anxiety, etc., but I’ve led a pretty cush life. I grew up with awesome parents, an incredible family, great friends, and talents and opportunities many never get. A few years ago my life was turned upside down and I want to be open and candid about it. Maybe this is my way of overcoming some of the pain and sadness I have pent up inside of me, which only gets out when my inner volcano erupts. I’ve been dreading this day for a year. 8/23/16 marks one year since my identical twin passed away. I want to share my story without holding much back. So here it is…

I grew up with Rachel, my twin, and we had a love hate relationship, as I’m sure all girl-girl-twin’s do (the hormones don’t help). High school was rough. I was positive Rachel was out to ruin my social life, and I remember she felt that way pretty often as well. But if you ask my mom (Diane), to this day she will admit that Rachel was definitely the bigger problem. She was a rapscallion and we liked and disliked her for this reason. Anyway, Rachel and I went to Mexico the summer of 2012 on a humanitarian trip, and this is where she started to act sick. It never seemed abnormal though. Later in the summer, we got in to the TV show “Lost”, and ended up laying in my twin size bed together, all day, every day for weeks watching our show. I was lazy, I didn’t realize that she was fatigued. She was taking 6 hour naps each day soon after. So much testing, nothing was wrong. But it was. Rachel was an athlete, and it was so unlike her to feel so fatigued and dizzy. It was August 9th, 2012 I was nannying Brodey. I was about to take him to the pool, when I got a call from Rachel who was at yet another dr. appointment. I distinctly remember thinking, she has cancer, brain cancer. On the phone she told me I needed to wait to go swimming till she got home.

My Mom and Rachel pulled up in the garage, and I was panicking. They made their way inside where they sat at the counter. I tried to push them asking over and over what was wrong. The silence and the tears lasted for what felt like a lifetime. I kept praying my initial feeling was wrong. They were both in tears. Finally, Rachel got the courage to tell me she had a brain tumor—and it was cancerous. I was right, for the first time that I didn’t want to be. I didn’t know what to think or how to respond. But Rachel being the sassy girl she is, was quick to make it known that she was going to get the thing cut out of her head, get back to normal, and be running again by state track the next year. I left and went to the pool, Rachel made me. I met some friends but kept the news to myself, my whole family didn’t know yet. I kept thinking about it, but didn’t know how scared I really should have been. That night she was at Primary Children’s in SLC. I visited her, only to find out that she had DIPG, and it was not going to get removed. Over the next few months it became apparent that Rachel’s initial plans would not come to pass.

The next few months I grew up really fast. I also missed more school than anyone should.  Just a few words from my journal:

 “Rachel called me early this morning- crying. She was homesick and just wanted to hear my voice.”
“It scares me to think about Rachel’s cancer. What’s going to happen next, how many more Christmas’.”
 “No one understands, and I am DYING on the inside. I wish someone would see it.”

I was dramatic. But that is how I felt. I was a high schooler that just wanted a normal life back. I was withdrawn from my dad, and my mom and Rachel were in Tennessee. And when they got back, Rachel was a different person. Rachel gained weight, lost weight, got crazy side effects from her steroids that affected not only her appearance, but her personality (in more drastic ways that most would think). I would call her daily when she was in Tennessee to quote a funny line from a TV show because I was great at impersonating it, and she would laugh so hard. But eventually the laughs stopped. That’s when I knew that something really bad was happening.
But over time, Rachel found strength. She had different treatment types and we saw improvements. She wasn’t normal, but she was close to the Rachel I grew up with, and that was good enough for me. Until her health declined. Cancer was a tease (I’d use a stronger word, but I’m trying to be good about that). It would give me glimpses of hope for my future, and then rip it out of my grasp. It was cruel and unfair to me and my family, and most of all, it was Rachel’s personal hell. But she went about her trial with courage, faith and strength.

I’m going to skip along so I don’t write an entire book here (skipping some of the details here, because there are so many that are too painful to write (regret, scary symptoms, fear, etc.)), but fast forward a couple years. Dec. 5, 2014 my boyfriend proposed to me. Rachel was excited and happy to help me plan the wedding. She was so healthy, working a TON, having a social life. It was like the same old Rachel with edges that were a little more round. I know she was excited for me, but she also really struggled. Why wouldn’t she? Maybe that’s another twin thing… She even recommended to my mom that my mom and I go to California together since I had missed so much time and attention for the last few years while her focus had to be elsewhere, keeping my sister alive.
Here is where I’m going to get a little religious on you. I was sealed to my husband in the Oquirrh Mountain Temple on March 14th, 2015. My mom noticed Rachel’s symptoms starting to surface again that night. The night I was married. What are the chances. I believe God left her on this earth until I had someone to take care of me, because she was the one keeping me together. Cooper needed to be in my life. I know he did, because I wouldn’t be living today if I didn't have Cooper.

May of that year, Rachel’s symptoms became so severe she needed to quit her job at doTERRA. I had been having to walk her around the building linking arms to keep her walking straight previously as we worked together. I got the call that my mom had driven her there. I hadn’t seen her this sick before. I went and helped her walk so my mom didn’t have to come in. We sat in our boss’ office and she could barely get out the words. I think she felt like she had failed or was giving up on herself. I can’t imagine her pain. In fact, this is the first time I’ve cried tonight as I’ve been typing the story. It was one of the most difficult things I’ve ever had to witness.

For months after that her symptoms worstened. She lost a lot of her sight, hearing, ability to swallow, balance, walk, drink, etc.. If you’ve ever watched anyone slowly cripple away to their death, I feel your pain. I was driving over every night to see my twin. It was horrifying and the most scarring experience I had ever been through or hope to go through in my life. Just thinking about it tears me to pieces and causes me to relive the deep pain that was felt at that time. For some reason, as this happened, I tried to help her balance and walk and stand up on her own, all in the hopes that she would bounce back like she had done so many times before.

But she didn’t bounce back. In fact, it continued to get worse and drug out for longer than I could have ever imagined. In her last days, cancer ripped away her health, dignity, and eventually mortal life, but it didn’t take away her personality and most importantly her testimony of her Savior Jesus Christ. She had faith in him.
The most difficult part of the last days with Rachel is that the entire time her health declined, her mind did not. She was sharp. In fact, she was almost sharper than she had ever been. She thought a lot. She was a healthy mind, trapped in a nightmare. Rachel knew that she needed help going to the bathroom. She knew she couldn’t use a spoon, let alone swallow her food, and that someone was having to help her. Like I said, she was trapped in a nightmare, and we had to watch, unable to do anything. She never gave up. She fought, but ultimately she passed on 8/23/2015. One year ago today.

I laid in bed for a few days by her side before she passed. We had some sacred experiences together, but ultimately I prayed she would be released. She is gone, and has been for a year. But she is not really gone. I have felt her with me, and Thursday I know I will feel her again as I perform her temple work. I am so humbled and eternally grateful. Rachel turned in to a new person with cancer, I said that previously, but ultimately, she turned in to the most Christ-Like, charitable, funny, wise person I have ever met. Days before she passed I couldn’t be in her presence without melting down. She knew I was struggling and she knew why, and she was the one to comfort me. I wanted so badly to be the strong one, but she lifted me up when I was down. I miss her.

I can’t finish writing this, but maybe someday I’ll be able to. So I’ll copy some of my thoughts from the talk I gave at her funeral:

I will miss the touch of Rachel’s long dainty fingers. Listening to her tell me how much she loves me. I will miss watching her sass people and the way she’d bite my fingers when I helped floss her teeth. I will miss the way she locked me in to hugs, or brainstormed gifts for others. I will miss hearing her sweet testimony and her contagious laugh. But I know although I cannot see her, that she is very close. I MISS MY TWIN, and EVERYTHING I said has left a hole in my heart.

Growing up, we lived very close to our grandparents and visited often. My favorite thing I learned from my grandma is that there are no goodbyes. Each day I would leave her home and tell her goodbye on my way out, to which she would respond, “No, it’s not “goodbye”, it’s “so long” or “see you later”. When my grandma passed away, I said “so long”, to which I now get to say to my sweet twin. This is not goodbye, just see you later.

She has won her battle and is now free from the pain and misery of a weak and broken body.

I know Christ lived and died for us. I know there is a plan. I know God lives and loves each of us individually and will listen to us when we pray. I am grateful for the way Rachel has touched my life and helped inspire me to grow my testimony. I am grateful for the peace this gospel can bring as we go through this trial and the rest of our mortal experience.

With all this being said, I know so many people have it more difficult than me. In fact, I strongly believe we're all pushed past our limits. But this is my story. And I can't express a fraction of what it's been. Twin bereavement is much different that other kinds, and I'm having to learn how to navigate it. One year, and so many to go till I get to see my sweet twin again. I guess that's why we're told to keep the perspective of "this life is but a small moment".

Lastly I want to say thank you. For prayers, love, and friendship. If you're reading this, you've touched my life in some way or another. Unfortunately, I let this trial make me ignorant of all the love and support I had. But looking back, I couldn't be more grateful, because I wouldn't have gotten through it without you, and most importantly my Heavenly Father and Savior Jesus Christ.  

Now I'm done. I pray that you will count your blessings, hug a sibling, and "think of all the beauty that is left around you" -Ann Frank. Because that is what I have been trying to, and will continue to strive to do. 



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  2. I remember bringing my son Jeremiah Smith to your house with two Valentine Heart Sugar cookies back in Jr High Days! Then there was the visit to Rachel following one of her surgeries and my son Ben Smiths second ablation for his heart condition. We barely knew her yet she touched our hearts and changed our life. Thanks for honestly sharing your feelings. Hugs ! Susan Smith

  3. I remember bringing my son Jeremiah Smith to your house with two Valentine Heart Sugar cookies back in Jr High Days! Then there was the visit to Rachel following one of her surgeries and my son Ben Smiths second ablation for his heart condition. We barely knew her yet she touched our hearts and changed our life. Thanks for honestly sharing your feelings. Hugs ! Susan Smith

  4. Jordyn,

    I happened upon Rachel's blog several years ago. No clue why I got hooked because I am not a blog person. There was just *something* about her. I was so very happy when she was doing better and so very crushed when she passed. I can't believe it's been a year. I MISS HER, and I am a 37 yr old stranger feom the Midwest who has never met any of you. She was really funny and smart, and I so badly wanted her to be the one who beat DIPG.

    Anyway, considering how much I miss her, what you are going through is unimaginable. I will pray and pray for you.

    You are a sweetheart and I hope you are kind to yourself,the way she would want it.



  5. Bless you. I am so sorry. I'm praying especially hard for you today. Love you. :)

  6. Bless you. I am so sorry. I'm praying especially hard for you today. Love you. :)

  7. So, so beautiful. Thank you for sharing Jordyn. You are wonderful.

  8. Your story touched me and moved me today. I am also a twin and my sister has had some major health challenges/scares. I can't imagine what you have been through, but know that it is a special kind of hurt. Your connection to Rachel extends beyond our physical and mortal realm--i know it. Peace and love to you as you remember your sister.

  9. So sorry Jordyn for your loss. Hold on right to your beauitful memories. Thank you for sharing such a Special relationship. God bless and may he keep you always safe.

  10. So sorry Jordyn for your loss. Hold on tight to your beauitful memories. Thank you for sharing such a Special relationship. God bless and may he keep you always safe.

  11. So sorry Jordyn for your loss. Hold on tight to your beauitful memories. Thank you for sharing such a Special relationship. God bless and may he keep you always safe.

  12. I learned of Rachel's diagnosis years ago and I had kept in touch with her via email and reading this blog; she was so sweet and full of life and positivity. She had so much grace, especially for someone who dealt with the things she dealt with. My sisters and I lovingly prepared a care package for her and sent it to her and we were so happy to see that she was getting stronger and improving. We were devastated when she passed and we think of her (and you and your family) often. I checked back here today because I know August 23rd was the day...and I cried reading your story, Jordyn. Sending lots of love. The both of you could not have asked for a better twin. <3
    Love, Tina

  13. This touched my heart more than you will ever know. I admire your strength and character, Jordyn! Thank you for sharing your tender feelings.

  14. I never knew Rachel personally, but people close to me did. I prayed for her and your family a lot, even after she passed. I was never a runner, but I got into it a little bit around the time Rachel was diagnosed, and my siblings and I ran the Run for Rachel 5k that November. That's where I learned to love running, and it has changed my life. And it was because of Rachel. I ran my next few big races thinking of her. Last night, I happened to stumble upon my Run for Rachel shirt, and I knew that this year mark was coming up. I looked up her blog to find the actual day of her passing and saw that it was a year from yesterday. I decided to wear my Run for Rachel shirt today in her honor. She seems like a wonderful person, and I know she's touched my life and so many others. I'm praying for you and your family, because I recognize that this is something you'll have to deal with for the rest of your lives here on Earth, and I just want you to know that you're still receiving love and support. I know that God takes care of His children. (All of His children.) I hope you have a wonderful experience doing her work for her in the temple tomorrow.

    Thanks for sharing your side of this story. You and your twin are loved. :)

  15. Your statement "...we are all pushed past our limits" stood out to me as I read your post. That statement just made something click for me so before finishing the post I typed myself a journal note. I know I will need to read this again at some point in the future. Thank you for your testimony and for sharing your eternal perspective. While what I wrote is addressed to myself, I thought since your post helped to trigger the thought process I would's where your statement combined with the Spirit brought my thoughts:

    We're all pushed beyond our limits of what we can bare at times - pushed to where we cannot handle this life because part of eternal progression involves the need for each of us to learn reliance on the Savior and His Atonement. It's not enough to just say we believe even if we feel it, but we come to really know Him and feel heartfelt gratitude for Him and the Atonement when we use our agency in the face of burdens too great to bare to draw toward heaven rather than the adversary or "solutions" of this world. With each major trial we really are at a fork in the road - turn toward heaven or turn away. We experience and witness the power of the Atonement and His tender mercies in our lives and really come to know Him as our Savior when we turn to Him in faith to save us from baring these burdens alone and to help make up the difference for what we lack. We cant develop a strong testimony and faith in Him without coming to know Him. We can't progress eternally without a testimony in Him. We will each be stretched beyond our limits, but with proper use of agency we will never really lose and instead gain much more than our minds can even comprehend in mortality. Another reason I think this life can be so hard to bare is because we aren't meant to stay in this world. We are eternal beings meant to prove ourselves worthy to return to our Heavenly Father and live with Him in a glorious Celestial kingdom.
    Also when you need perspective maybe reread "God Will Have a Tried People" Elder Howard W. Hunter Ensign 1980

    Thank you for sharing your experience. May you feel the love of our Saviour and have a day full of joy tomorrow as you do the temple work for your sister.

  16. Jordyn,
    Why not use this blog as a way to express your grief? This blog served your sister well in a similar manner. You could come and share your thoughts here, dump them and then just leave them, never going back and re-reading what you have written. I've known a few grieving parents who have approached blogging their journey like that. They write what they need to write and just move forward never thinking about it again. A catharsis of sorts! Think about it, it could be really helpful. Thank you for sharing all of this, it was nice to see a post on this blog as i have checked many times to see if any of you are posting anything. I miss Rachel's writing! Take good care of yourself, and keep writing even if you do not end up sharing it!

  17. Thank you for sharing your thoughts, so touching and inspiring. I followed your sister's journey, praying for her all along the way. I was heartbroken when she passed, and wondered how her family could stand to go through that kind of heartbreak. My prayers are still with you, may you have continued peace. What a comfort it must be to know she passed her test and is waiting to welcome her loved ones home to be with her, never again to separate. How wonderful that you were able to do her temple work! What a gift for her and for you. Thank you again for sharing your thoughts, they lifted me up.

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  20. I googled DIPG twins and found your blog. A family I know, a twin girl, 5 years old, died today 5 months aftr her diagnosis. It seems like it is such a different loss. I was complelled to search. I read of your faith in Jesus Christ, and believe that you would agree that all things work together for good to those who are called according to...(i can't remember the rest). maybe the experiences of your's & your womb-mate will resonate with twins in similar curcumstances, and bring comfort and strength. Thank you for sharing.

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  22. Dear Rachel's Sister

    I am writing from Japan.

    My son who is 6 years old was diagnosed with DIPG this april.

    So I am now trying to obtain many information of DIPG by using internet.

    By the way, I have a question.

    Your sister didnt get wait nor moon face seeing pictures of this blog.

    My son is gaining wait by using steroid, Dexamethasone.

    I am trying to persuade of decresing the quantity of steroid not to gain his wait for QOL but docter insist not to do it.

    How was the case of your sister?

    I am sorry to do such question even it is first time to write comment this blog.


  23. Jordyn: I'm sitting here with tears running down my face reading this. I'm not sure how I missed this entry since I followed your sister. I want you to know I never forget Rachel and your family's story. I work as an aide with a third grader that has much difficulty with school. While walking I do a lot of thinking and decided that I was going to use Rachel's "I can do hard things" with him when he didn't want to try.
    I can't imagine all your feeling but I want you are not forgotten. Twins have a connection like no other. You come out together and you hope it is forever. I so badly wish that your family never knew what DIPG means. I hope things are going o.k. for you and your husband. I'm leaving a few links that you may want to look into. I love you and please take care!! Camp Sunshine in Maine is free and they have a bereavement week.
    Camp Erin is for kids but you may see about volunteering. Camp Erin is all over the US.

  24. I wanted you to know that this blog and Rachel are continuing to help others my daughters best friend was diagnosed two weeks ago with Dipg they are both single children families and have been besties and sisters for 8 years she was diagnosed shortly after 13 birthday my daughter and I want to understand and be the most positive best friends we can be during this time but inside we are screaming and crying I read this entire blog in a day and the strength and love that was conveyed helped me to have strength to help my daughter navigate through being a very supportive friend to our Dipg Warrior I don't know if anyone will see this but if you do please know that Rachel continues to help other families and especially teens as there is not much out there at all about teen experiences with this monstrous cancer I continue to pray for a cure and feel blessed to have come across this blog.

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  37. I would without reservation recommend working with "Rick Simpson Oil", My honest Gratitude goes to Dr. Rick Simpson for saving my dying life with his high quality RSO Hemp Oil, with the potency of the THC content in it very high. Some years back I was diagnosed with a deadly disease cancer of the lungs, we tried all kinds of medication all to no avail and also we even tried producing the DIY Rick Simpson oil at home ourselves but we were doing more harm than worse, Until I saw a post on facebook on how Cannabis Oil had cured a cancer patient then i decided to give it a try behold when i contacted Dr. Rick Simpson & i explained every detail of my problem to him and he told me that this Cannabis Oil will heal my cancer problem only if I can order for it as soon as possible. He then calculated the dosage for me to buy i think the dosage he calculated was 60grams of the oil which I ordered plus "30grams maintenance free" I was told that if I order for the Cannabis Oil right away by the next 48 hours the medication will get to my door step through the delivery services, Immediately I ordered for it behold it was delivered with the usage instruction manual at the exact time which i was told by Dr. Rick Simpson, Today i can boldly say I'm now free from my Cancer problem all Thanks to God Almighty, Dr. Rick Simpson and my lovely wife who stood by me during those years. I'm now living a healthy life and my utmost priority of sharing this short testimony is for those who are suffering from this Deadly Cancer Disease, Please don’t die in silence there is a cure for this Deadly Cancer Disease today. Without wasting more time kindly Contact Dr. Rick Simpson for ( "Rick Simpson Oil" RSO ) via Email: or WhatsApp +1-781-656-7138.

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