Wednesday night was awful. Ashtyn went to bed around midnight. I turned the lights off close to 2:30 am, and at 4:30 am Ashtyn woke up and the only thing she could whisper was, “Mom, lay with me.” Sometimes she likes me to lay in her bed and other times she doesn’t I asked her, as I often do, how much pain she was in on a scale of 1-10, 1 being no pain, 10 being the worst pain imaginable. She softly said, “10”. Ashtyn didn’t speak the rest of the night. I am so grateful she knew what to say that gave me the insight into what she needed. She needed me to lay in bed and help get her pain under control. Throughout the night she had a low dose of morphine continuously going through her central line. In addition to that dose she was allowed to press a button every 10 minutes that gave her extra amounts of morphine. Ideally she is suppose to push the button on her own when she feels her pain getting worse. Last night her pain was so intense she couldn’t even push the morphine button. From 4:30 am until 9:30 am I laid beside her pushing her morphine button every 10 minutes. I don’t think her pain level ever got below an “8” but at least pushing the button helped. By 10 am the doctors came to her room and finally increased her maintenance morphine from 0.3 mg/hour to 1.0 mg/hour. They also increased the amount of morphine from 0.5 mg to 1.0 mg every time she pushes the button. On top of that they gave her an extra 4 mg dose initially just to get her pain under control. With peace knowing she was feeling better, I fell asleep and slept until 1 pm. Ashtyn slept until 3:30 pm.
When I woke up I felt emotionless, burnt out, and numb. I felt nothing. I was just existing in a small room by myself with nothing to feel. A nurse informed me that while I was sleeping a friend had brought her therapy dog to see Ashtyn and another friend had stopped by to say hi. Miraculously messages and texts started coming from Ashtyn’s Army. My cousin and his wife from the DC area sent me an email voucher for a 2 hour house cleaning service. My sister Alisa called to tell me she was going to stop by soon and bring me lunch. Ashtyn received a bag of gifts from Jason’s work. Jeni dropped by a box of valentines from Ashtyn’s elementary school. Two separate youth church leaders brought Valentine’s cards. Messages of encouragement continued to come from the blog and Facebook.
Are you kidding me? Have we forgotten how good this world is? Have we been fooled to think there is no compassion and love left? Has the negativity of our times clouded our eyes making it difficult to see all the positives? Does bad seem to dominate good? I don’t believe for one second that the power of good isn’t running rampant around the world.
With Ashtyn’s Army, how could I not immediately feel full? How could Ashtyn not completely feel loved? The power of Ashtyn’s Army is strong. Some day soon I will write a post on the miracles Ashtyn’s Army has brought into my family’s and Ashtyn’s life. It’s incredible.
I am so proud of Ashtyn today. She struggled with such pain from mucositis and never cowered away. In all her misery she allowed me to help her with a shower. Even though she threw up in a blue plastic bag while in the shower, she pressed forward. Ashtyn brushed her hair and teeth and did her oral care with mouth wash. She forced herself to swallow two pills morning and night that aren’t available in IV form. Can you imagine swallowing anything let alone pills with a completely raw throat? Under the direction of the nurse, Ashtyn let me do her sterile dressing change for her central line and she even helped me take off the sticky tape of her old dressing.
Today her temperature ranged from 101.6 to 104.4 degrees. In the last couple of days the nurses have drawn blood to test if Ashtyn has an infection. I am not surprised that her blood cultures have not grown any bacteria. For now the thought is her temperature is a natural response to the chemo and mucositis. Referring back to my post “Nowhere I’d Rather Be” I shared, “ I believe she did have an infection of some sort, and whatever infection she had was healed using the power of God.” I still believe had she not received a blessing from her Stake President on Tuesday night, her blood cultures would have come back positive for an infection. But for now, she is well.
At 5 pm I was feeling good. Jason had come up after work to be with Ashtyn and the love and support from Ashtyn’s Army surrounded us. The doctor came into the room with a smile on her face and said, “I have news about the lab work. Chandler has been matched and is able to be the bone marrow transplant donor for Ashtyn.” What an amazing moment that was for us. I immediately called Chandler. He reacted like a boy receiving an Xbox for Christmas. God is so kind. Referring to my post “I Could Not Have Planned It Better Myself” I wrote, “From the moment I felt a bone marrow transplant was likely, I have always thought it would be Chandler who would be the donor.” In that same post I wrote of the dream Ashtyn’s 10 year old sister Morgan had, “…They compared my tube with Ashtyn’s. It was not a match. They compared Ethan’s tube with Ashtyn’s. It was not a match. Then they compared yours (Chandler) with Ashtyn’s and it was a match.”
There are many different explanations that can be said about our previous feelings and comments. It can be said to be a coincidence, a lucky guess, or intuition. To me it doesn’t really matter what others call it. For me I call it revelation. “Revelation is communication from God to His children. This guidance comes through various channels according to the needs and circumstances of individuals and families. According to our faithfulness, we can receive revelation to help us with our specific personal needs, responsibilities, and questions.” Morgan had a dream. I had a quiet spiritual prompting. Cool!!!
I started the day feeling empty with no emotions and ended the day full of joy. I love my life. Yep. I LOVE MY LIFE. Even living in the hospital, watching my daughter suffer in pain, not knowing what each day will bring other than a lack of sleep and constant medical procedures. I am away from Chandler, Morgan, and Ethan whom I adore. I no longer live the life of carpooling, gym, tending my nieces, friends, family time, and being at home. I am grateful for the life that God has handed to me. We have a Heavenly Father who cares and has a plan for us. We have a Savior who understands completely and lightens our burdens. I have four remarkable, special children. I have friends, family, and Ashtyn’s Army that are raising me up everyday. Life is good.
10 responses to “Life Is Good”
You guys are the sweetest family! Hang in there! You can do hard things!
ASHTYN – YOU RAISE ME UP!
❤❤❤❤❤❤❤❤❤❤❤❤
LOVE THE GIRL, THE FAMILY, THE MESSAGE, AND ESPECIALLY THE SONG TODAY!
Hi Ashtyn,
Just so you know… our entire fifth-grade class has created a banner for the Army! We are behind you 100% and have added many people who don’t even know to your army. The banner will be sent this afternoon, I hope it arrives at a time you are in need of a lifted spirit!
Love, Mrs. Axtman’s 5th Grade Class
I found the blog by way of Facebook. Your story is so touching and the blog is beautifully written. God bless you. I showed my kids (2 and 4) your blog. My daughter thinks you are beautiful and kept wanting to see you. Our thoughts and prayers are with you and your family.
Much Love, the Song family
Ashtyn I know your mouth is hurting so terribly. I just wanted you to know that I put your name in the temple tonight. So your army just got even bigger. Stay strong and brave sweet girl!
my faith has been increased and then decreased and then increased again due to your illness ashtyn. to know how you and your mom are dealing with this trial truly inspires me. i know if you both can continue with a positive frame of mind then i should stop doubting and complaining about my own petty problems. you help me, thank you and keep fighting and believing.
We love you so much! I know you can do this! I know that you have it in you to beat all of this- to keep eating, keep praying and to keep fighting! What a wonderful blessing that Chandler is a match- we love you all.
Hi, I learned about Ashtyn from Karen W. I am truly inspired by the two of you. You are in our thoughts and prayers!