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Ambiguous Leukemia Archives - Ashtyn's Army

God’s Orchestra

By | Daily Life, Trials, Uncategorized | 9 Comments

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.