God’s Orchestra

It is so very late.  Another non stop day is over.  I am now sitting in Ashtyn’s dim hospital room, sitting on my couch/bed while Ashtyn sleeps.  For the moment it is quiet.  The distractions are minimal.   I have always enjoyed sitting in bed, enjoying the silence, as I ponder the events of my days and the emotions felt.

I feel supported and loved because of everyone’s thoughts and prayers.  I feel strong as if being raised up by angels.  I feel such comfort because of the Spirit.  I feel an immense amount of peace because of my Savior. I have complete hope because of my knowledge that God is the orchestrator of my daughter’s life.

“In this very room there’s quite enough love for one like me,
And in this very room there’s quite enough joy for one like me,
And there’s quite enough hope and quite enough power to chase away any gloom,
For Jesus, Lord Jesus … is in this very room.”

But my sweet Ashtyn doesn’t think she feels it.

Today was a day that she grieved.  Grieved for losing the life she once knew.  It was a day of sorrow for not being able to go home.  It was a day of stress with all the medications, vital signs, medical talk, and being attached to an IV pole.  It was a day of depression, not wanting to socialize.  It was a day of frustration with not having control of anything.  It was a day of fear in starting her chemotherapy.  It was a day of anxiety not believing she can handle it.  It was a day of despair not feeling God near.

Oh how I wish she knew that God was the orchestrator who was perfectly composing and arranging a powerful, inspiring, and touching arrangement.  He is directing people to do the things that need to be done in order for His plan to work.  He knows what is going on.  He has a plan. He is orchestrating all things.  He is inspiring people to get involved, become informed, share their talents, serve where needed, give of their time, build each other’s faith, and rally together in prayer.  He is pleased with His orchestra and knows it can do great things.  I am deeply grateful for all of you.  Reading her blog makes you part of the orchestra.   My girl will get through this, day by day, because of all the support and prayers given.

Ashtyn didn’t wake up until noon today and seemed to be feeling pretty well.   She agreed to eat a burrito for lunch. However, feeling good didn’t last long.  By 2 pm the Taco Bell bean burrito had arrived and she no longer felt well enough to eat.  Ashtyn was anxious, sick, and miserable.  The nurse was willing to give her some Ativan to calm her nerves.  My sister Wendy sat at her bedside and talked to Ashtyn about the coping skill of guided imagery and how to find her happy place.  “Find out where your happy place is.  Make it the best place in the world.  Go there.  Close your eyes and think, make your body sink into this place.”  My sister proceeded to tell Ashtyn all about her own happy place.  A beautiful spot under a big willow tree where the leaves came all the way to the ground allowing her to be alone.  She laid on a white comforter in the perfect temperature, on the greenest grass, with the most beautiful flowers, and sparkling clean stream….  Wendy spoke of her happy place as Ashtyn fell asleep.  Wendy’s part in the orchestra is being able to teach Ashtyn the coping skill of guided imagery.

Wendy with Ashtyn
Wendy visits Asthyn
Wendy and Ashtyn
Wendy and Ashtyn

Ashtyn slept for a couple hours.  Upon waking the cycle repeated itself.  She felt good for a short time and then suddenly felt horrible again.  “I just want to die Mom!  I can’t do this.  I have to go home.  I can’t stay here anymore!!!  I can’t feel God.”

I turned off the lights, laid beside her in bed, played soft music from the Pandora station “L.D.S Hymns”, and tickled her face.  Eventually she fell asleep.

It is good to know two coping skills so far that work for Ashtyn in times of distress…meditation and music.

Just like music helps calm Ashtyn, the symphony that each of you play in God’s orchestra for Ashtyn and my family helps to calm me.

Here is a little information about Leukemia:

A.L.L- Acute Lymphoblastic Leukemia is the most common and mildest risk leukemia and is characterized by excess lymphoblasts.
A.M.L- Acute Myelogenous Leukemia is a fast-growing moderate risk cancer that is characterized by many unformed cells called myeloblasts.  Fewer than 10% of people with A.M.L are children.

Ashtyn has “undifferentiated” or “ambiguous” Leukemia.  It is a high risk, extremely rare form of leukemia in which the cells lack sufficient evidence to classify them as myeloid or lymphoid.

The treatment for now will follow the A.M.L protocol:

Ashtyn will stay in the hospital and get 10 days of intense treatment with three different types of IV chemotherapy drugs.  Afterwards she will “recover” in the hospital for 20 days.  After a total of 30 days, the hope is that she can go home for 7-10 days with an outpatient bone marrow aspirate and biopsy to observe how her bone marrow responds.  If she responds well with a wipe out of cancer cells she will go back to the hospital and do another 30 day treatment.  If they don’t notice a satisfactory response after initial 30 days, a new care plan will be made and we will likely move in the direction of a bone marrow transplant.

During this month she will be treated daily with a combination of Doxorubicin, Etoposide, and Cytarabine. Great care will be given to prevent nausea, mouth sores, dry eyes, and anxiety. She is required to have eye drops every 3 hours, go to the restroom every 2 hours, and use special mouthwash a few times a day.

How did I “know” she had leukemia the day I picked her up from school, other than just her pale skin and lack of energy? God’s revelation, which others may call mother’s intuition.  He wanted to prepare my mind and spirit for the news so instead of being in shock, I would be strong and positive for Ashtyn. God has given me inspiration and many tender mercies that have helped me support Ashtyn with what she needs.

I know God will be with us here again tomorrow.

9 responses to “God’s Orchestra”

  1. Ashtyn and family. We don’t know you but we do know what you are feeling and can’t help but to feel your pain as we revisit these same feelings from almost 3 years ago when our son was diagnosed. Our family prays daily for you and know more than anything that Heavenly Father is aware of each of you and your needs. We live in your stake and whenever the time is right for you, would live to meet you. Until then, we can say from experience that you couldn’t be in a better place to be treated. You have many people all over the world praying for you and we know that prayers are answered.

  2. It is a true gift to read your journaling. You are an amazing woman and your faith is remarkable. May The Lord bless and keep watch over you, Ashtyn, and your wonderful family. It is at times like this that we feel the intimate relationship and love of our Savior. He is indeed our Friend.

  3. What an amazing testimony you bore throughout this post. I don’t know you either, but I feel your spirit so strongly. I just followed this link through Marcy’s post. I am soooo grateful to have read this. I am soooo sorry your sweet daughter has to have this trial. I am teary because I am imagining my daughter in her place and I’m sure this is so difficult. But yes, you are right, God IS there and I am convinced of this and of his eternal plan. Love your sweet daughter and know that we are all in this world together just trying to help each other make it through and will be rewarded beyond our imaginations.

  4. Dear Ashton and Family,

    I am so sorry to hear you are going through this. Please know of my love for you and your family Ashton. I pray you will feel the love of the Lord, that you will feel the comfortor near. I am praying for you through your treatments, that you will feel His love for you. He knows you, He knows your name. He knows your pain and sadness. He aches with you and knows how to heal and help you. He will never leave you. I send all my love and prayers for you. Love, your friend,

    ~Alison Brown

  5. Suzanne it is so good to read your words. I can’t even express how helpful it is that you write and share them! All day, every day I wonder and ponder about Ashtyn and how she is doing, what she is going through, how you are coping? Then I read your blog and you provide the answers with such detail, the story of the day woven with your extreme faith, hope and peace. Your words are amazing, you are such a strong woman, Ashtyn is so blessed you are her mother. Ashtyn is so strong and brave and faithful too, even when she doesn’t recognize it. I do believe too that God is the orchestrator of this event in her life, that it’s not some accident or fluke. He has a plan for her and this part of the plan will help her grow into the woman she is meant to be. I love you guys and pray for you always. Thank you so much for sharing “Ashtyn’s Triumph”” with us!”

  6. It is humbling to know how much you are being led by the Spirit, not only in ‘knowing’ what was wrong, but by being so positive and proactive. Thank you so very, very much for sharing Ashtyn’s Triumph as it not only helps you, but helps all of us who are concerned and deeply care, and yet not in your inner circle. You definitely have our thoughts and prayers for Ashtyn, you, and your family. God bless you all.

  7. I am sooooooooo sorry you all have to go through this,I in a small way feel what your going through.my 7 month old baby Dash was born with an heart defect that made h his lungs under develop so we had to trash and ventilate him along with a lot more, but we were there at pcmc for 6 months and Ijust hope you are forming some friendships with the other moms and families up there they are such a great support and they are experiencing what you are going through. please know we are thinking of you and your darling daughter and praying constantly for her to feel some relief and peace. please let me know if you guys need anything! Abby Johnson (Clawson) if you remember me. 🙂

  8. It was so good to see you Suzanne and Ashtyn. I’m very grateful for your willingness to share this difficult experience with others. As I have read through your entries I have been so touched by the spirit. Your faith and trust in Heavenly Father causes me to have a greater desire to trust in God. Thank you for allowing me to be a part of such a sacred experience of tribulation.