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….”
AND ON AND ON AND ON.
Ashtyn fell asleep as I read to her.