The Routine

I suppose Ashtyn and I are getting into a routine, though it is an unpredictable, unplanned routine that we take minute by minute.

Nausea and pain is constantly on our minds.  “Where’s the barf bag?” is a question she commonly asks.  It’s like her security blanket, whether she is going to throw up into it or not.  When Ashtyn does throw up she likes me to put one hand on her forehead and the other hand on her stomach.  Along with her constant companion, the blue barf bag, a box of Kleenex is always by her side for the moments of coughing up mucus or spitting out saliva that is too painful to swallow.  A new addition to her bedside companions is the suction catheter that she uses to suction spit out of her mouth.  Several times a day she asks for water.  After sucking a bit of water through the straw she spits it out and wonders when she will be able to swallow again.  Throughout the day she is asked to swab with mouthwash which is supposed to help her mouth sores.  I also try to keep Chapstick on her lips.  She always does what she is asked to do.  Ashtyn sleeps off and on all day.  She often pulls her nasal cannula out of her nose.  As I put it back into her nose I remind her that she needs the oxygen.  There are the moments in the day that her temperature reaches 104.  Damp cloths are put on her forehead and tummy.  Tylenol always brings her temperature down to around 101 only to then increase again.  Medicine continues to be given every two hours to help with nausea and pain.  I often ask her, “How painful is your throat right now when you don’t talk?”  “How much nausea are you having?”

There is nothing more humbling than giving your 12 year old daughter a bed-bath when she is too sick to help.  There is nothing like watching her brush her hair as clumps fall out.  There is nothing like helping a perfect young woman walk slowly to the bathroom making sure she doesn’t fall.   There is nothing more peaceful than giving her a foot massage with lotion while listening to LDS hymns on Pandora.

Sometimes Ashtyn likes music.  Most of the time she doesn’t   Sometimes she likes to be talked to.  Most of the time she wants silence.  Sometimes she wants her blanket on her.  Other times she does not.  Sometimes she will look at her phone for texts.  Most of the time she doesn’t have it in her.  Sometimes she asks for the TV to be on.  Most of the time she falls asleep before she is able to watch it.

There are moments when Ashtyn doesn’t feel she can do it.  “You are strong. You are beautiful. You are doing so good.  Do you feel angels helping you?  Do you feel the prayers of hundreds of people that are supporting you?”

At 1:00 am she asked, “Will you tell people to keep praying for me?”  “Yes I will Ashtyn.  They have the faith that you will start feeling better. Do you?”  Of course she has the faith that prayers will be answered.  Of course she knows God is near.  A few minutes later she said, “I want to talk to you but I can’t”.  She is in too much pain to talk and it’s really difficult to understand what she is saying when she does try.  “Do you want me to talk to you?  I can read all the comments you have been getting on Facebook and the blog.”  She nodded her head.  I read comments written for her.

“Ashtyn, we have joined your army since Grandma told us this AM. Ashtyn and Suzanne, you and your family will be in our prayers. Do not despair as God is with you every step of the way and will bring you through this. We will add your name to the prayer list in our community. We will follow you through this. We love all of you more than just friends, you are family! Kisses & hugs.”

”I’m a complete stranger, but I’d like to be part of Her Army. Ashtyn is incredibly strong and is such a great example of faith. :).  I am asking your permission to think, pray and fast for Ashtyn…for her continued faith and strength. I’d also love to put her name on the prayer rolls.
Sleep well, Ashtyn (and mom)”

“Not a second goes by I am not thinking and praying for sweet Ashtyn.  I feel so much love for her and also feel the love God has for her and your family. What an incredible perspective on life and cancer.”

“Ashtyn, you are a beautiful amazing girl that is bringing a community of strength together. I am a so proud of you and your strength. You are in my prayers everyday. I know that you will overcome this and become happier and healthier than ever before. When you have a bad day just know there is an army of people that love you and are here for you. Whatever you need. Big Hug!”

“Ashtyn, you are amazing! I am so inspired by your positive thinking, your kindness during the toughest times, and your strong and determined spirit. You WILL conquer this cancer!”

“Stay strong Ashtyn!!! You can do this!!!”

“We love you Ashtyn! We pray for you every day!!!!!”

“Ashtyn, you are one amazing kid!! I would never have the courage to go through all of that!! No matter what happens, you will always be loved!! You deserve to go to Disneyland!! I wish I could come with you!! I haven’t been there since 2007!! Hang in there!! Hang on to that strength long enough to go to Disneyland!! Love you!!”

“Ashtyn, You have a whole family of cousins in Washington DC that think of you and pray for you throughout the day! Isabelle, your 3rd cousin who is 7, comes home from school wanting to know if you got your pickles and the latest update. Jake, the 4 year old, even puts in a nightly prayer request for you. You are part of our family conversations and prayers daily!”

“Ashtyn, You have been really strong lately. I hope you will never give up and whatever happens to you, I want you to know that my family is praying for you night and day. Ashtyn, knowing you for as long as I have, you are strong and you never give up. I hope I can visit you sometime.  We love you!!!!”

“Ashtyn, you are going to beat it too! I can tell you are so strong and determined and that is going to get you through this. Keep fighting and we’ll keep praying!”

“Hey 🙂 you probably don’t remember me but I was on your brother’s football team.  I was just hoping you’d be alright.  I will try to send you something!  I’m really sorry for what’s been happening lately and I just want you to know I’m here for you and so is your army!!! :)”

“You don’t know me and somehow I feel like I know you. Ashtyn you are in my prayers, thoughts, and heart. You and your family are very strong and can get through anything, you just keep your pretty head up.”

“Ashtyn, you are in our prayers. We are grateful to share this journey with you through this blog and are now proud to be part of your army. You are never alone.”

“Our family is praying lots for you Ashtyn! I know you don’t know us well, but we think of you often, and you are kept in our thoughts and prayers all day long. Your name is in the Oqquirrh Mountain Temple, too!”

“Ashtyn, I was so touched by your words! I am actually a nurse on the unit you are on at Primary’s. We just haven’t met yet… I’m also friends with Nanette. She told me how amazing you are! I can’t wait to meet you! You are an inspiration to so many! :)”

“Ashtyn, We don’t get to see you much but I am glad we got to visit with you and your family at your grandma Susan’s house a month ago. I want you to know that the Jackson family is thinking of you and is following this blog, fasting and praying daily for your quick recovery. Thank you for inspiring us.”

“You are a beautiful, inspiring person and I am lucky to be able to read all about you through this blog. Keep up the strong attitude and you will make it through this! xoxoxo….”


Ashtyn fell asleep as I read to her.

15 responses to “The Routine”

  1. Everything that was said there is very true!! You are the sweetest girl in the world!! Yesterday, I was on tracks downtown, and I asked my dad if I could go visit you, but I know that I wasn’t able to… I have a cold and I don’t want you to suffer in my little sickness. I wish you the best of luck in all you are going through!! We love and pray for you every day and night!! We love you lots and lots!!!!!

  2. I also feel your strength and testimony through everything you have had to go through. What a great example you are! You are my hero! I look back now and you were always so willing to do anything we needed you to do. You were willing to play basketball and clean a ward members house. You came to the Humanitarian Center, even though you were not feeling good. You never complained! I am so inspired by you! Your mom has also been such a great example of Christ-like behavior and I can’t express how great an example that is for me!

    I know you can get through this! I am constantly praying for you and I try and pray for what you need. The blog helps with that! Thank you Suzanne for posting this blog. Ashtyn, you make me want to be a better person! I am so grateful I got to know you a little in Young Womens and I feel very blessed!!

  3. Ashtyn, I don’t know if you remember our family from the U Family Housing around 10 years ago, but I have always remembered you and your family. Your mom was a strength to me then and I find strength every time I read an update on your blog. We pray for you day and night and have also put your name on the temple rolls here in Colorado. You are a special young lady! 🙂 Know that Heavenly Father and Jesus love you and are aware of your every need. Your Army is behind you all the way, too!

  4. Said a prayer for her and you at 1a.m and 3 a.m. last night. When I can’t sleep, or am woken up during the night by my kids, I always make a point of praying for my loved ones. You are such a good mommy!!!!

  5. I was reading your blog in class at school today because I wanted to think of something else other than my essay. I was crying from feeling the spirit just like everytime I read this blog, and my friend saw me crying. She asked if I was okay and if I needed anything. I said, “I want to get this cold to go away so that I will go see my hero in the hospital. I have been wanting to visit her since I found out she was in the hospital to begin with.”” My friend asked about you and I told her about the way how you are in the hospital everyday and how you just want to go home with your family. I told her about your army that I am a part of. I told her everything that she needed to know to have her join your army. I am doing everything I can to make you happy! I will feel complete when I visit you! I love you! You are always in my heart of prayer!! Now go to Disneyland!!”

  6. Beautiful Ashtyn! You probably don’t remember me, I know your family from when you lived in Spokane. Your Mom and Janet Shumway were my visiting teachers. They were an inspiration then and were so kind and understanding to me and my family. I have been reading about you everyday, it breaks my heart to hear how much you are going through. Hang in there sweet girl. You have an amazing family. I am praying for you daily, and will continue until you get through this mess! I believe in you, in your family, and in your faith and love of God! Always in my thoughts and prayers!

  7. I don’t know you or your family, but came across your story via the YouTube Vocal Point post. I have shed tears reading your story, your thoughts, and envisioning what you must be feeling experiencing such a difficult trial with your daughter. It has given me increased perspective today on what’s most important, and the trivial things that need to be left behind. God bless you for carrying the load – please remember to always share it with Him.

    Janene Wawro

    • Thank you so much for your compassion Janene. We know that Ashtyn is not going through her trial in vain because of people like you. Thank you for sharing.

  8. I know that you can get through this. You are so strong and you are the best friend that I have ever had! You have a wonderful spirit and I know that Heavenly Father and Jesus won’t give you something that you can’t handle it may be hard to talk but you and your mom could communicate by writing on a whiteboard and pass it back and forth. I know that you will get through this and will be named as a young cancer survivor. Kyann is going to cute her hair boyshort for you!

  9. Ashtyn, you are one amazing little girl! I am friends with your Aunt Trisha and learned about your army from her! We are all so blessed to be a part of Ashtyn’s Army! I am touched and brought to tears every time I read your blog updates. You and your mom are so inspiring. Keep fighting and know that there are TONS of people who have joined your army and are cheering and praying for you! Fight on girl!

  10. Dearest Ashtyn,

    I am so very sorry that you are so sick. It absolutely breaks my heart to think of you suffering so. It is so unfair. When I think of you, I remember the bubbly third grader who lit up my classroom with her creativity and bubbly energy. Even though you don’t feel that energy now, it is still inside of you keeping you strong. You are so brave and such an inspiration. You have character and inner strength far beyond your years. I want you to know that your Canyon View family is thinking about you every minute of every day. We love you, and we all want you to feel better.

    Mrs. Schnegg

  11. Hey Ashtyn. I have been so inspired by how strong you are surviving this. My Aunt had a cancer that 1/3 people can live through. My aunt lived. She is still with her family. That shows that there are miracles in this world. I can feel that this is a miracle just waiting to happen.

    Love Always,