The Road To Diagnosis

Ashtyn and Suzanne
Ashtyn with Suzanne

My brain is mush. I hardly know what day it is, let alone be clear of the events that have taken place Thursday, Friday, and Saturday.  I am definitely at sensory overload and the interruptions to write this seem to be constant.  Ashtyn’s first night in the hospital was one with no sleep.  She had 2 units of blood transfused through the night which meant lots of interruption for vital signs. Even with or without vital signs I doubt any of us would have slept well.  With the silence and lack of distractions, Ashtyn had plenty of time to think and ponder the shock she was living in.  “Is this real?” “Am I going to Die?”  “Mom, this is ruining my plans!!!”  And she did have plans.  Ashtyn had plans to go to school and finish 6th grade. She had plans to continue enjoying our new home, relishing in her bedroom that was her sanctuary with the lime green and electric blue walls with Justin Bieber pictures hanging everywhere.  Ashtyn had immediate plans to help clean a lady’s house in the neighborhood who had a premature baby with the Young Women. She had a plan to learn her new Les Mis song on the piano this week.  She had plans in a few months and looked forward every day for the cruise she was going to go on in April. The Disney Land trip in May. The Lake Powell trip in June. The San Clemente, California trip in August.  Ashtyn had so many plans.

Doctrine and Covenants 121:7  “Ashtyn, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment; and then, if thou endure it well, God shall exalt thee on high; thou shalt triumph over all thy foes” and then you will go back to school, learn that Les Mis song, enjoy your home, hang with your friends, go on vacations, and do all that you want to do.  You will do these things as a stronger young woman with a refined character and empathy that will change the world.

Thursday the 31st was the day Ashtyn was supposed to have a diagnosis. The important bone marrow aspirate and biopsy was scheduled for 2:30 pm.  Ashtyn was afraid.  “Will it be painful? Will I wake up during the procedure?  Will you and dad be right by me?  Are you going to leave? Is this really happening?  I can’t do this? I want to go home, NOW!  Why me?”  My answer:   “You can do this.  You are strong, you just don’t know it yet.”

The aspirate went well.  Ashtyn was the cutest thing coming out of anesthesia.  She had a conversation with Jason. Here is some bits and pieces:

  • “Who is Justin Bieber?” Ashtyn: “Ummm” “…Is he your brother?” Ashtyn:  “I have a lot of brothers.”
  • “How many do you have?”  Ashtyn:  “Ahhhhhh…  I’ll go home to count them and then call you.”
  • “So one of your brothers is Justin Bieber, right?” AShtyn: “I’ll have to check.”
  • Ashtyn: “Call Casey and if you find out that Justin Bieber’s my brother can he come up too?”

Throughout the rest of the day and night I noticed that when Ashtyn and I were alone, she was more solemn with time to grieve.  With visitors she was distracted from her worries and smiled from time to time.

Friday February 1st started early with a echo-cardiogram at 7:30.  It was a very thorough one that took a while.  We watched Disney’s Tangled.  Once back to the room they wanted to rush her down to surgery to get a lumbar puncture and central line because there was an opening in the surgery schedule.  The problem was they hadn’t received her results back from her bone marrow to know if she had A.L.L or A.M.L. and she needed a Platelet Transfusion.  They hung the transfusion in the OR and assured me that by the time the prepping was done, they would have the diagnosis.  The plan was to give her a port.  She came out with a Broviac.  What is the difference?  A port is given to those who have A.L.L because ports are better for home care.  However her tests were inconclusive of the type of Leukemia. She had neither A.L.L or A.M.L so they chose the Broviac, which is used for patients who do more treatments in the hospital and need a line that is a “double lumen” which means it has two tubes in the line.  In addition to the difficulty getting a diagnosis, the surgeon had a very difficult time getting Ashtyn’s central line to flow through the vein into the heart.  The catheter seemed to keep hitting something that was preventing it from moving forward and would also cause the catheter to bow backwards.  I feel very blessed that, though the surgeon was quite frustrated, she persisted and succeeded in getting the Broviac in the right place.  The Hematologist later confessed that he really wanted Ashtyn to have surgery that day because that particular surgeon is world renowned.  Not a coincidence. *God’s tender mercy*

Surgery wiped Ashtyn out for the rest of the day.  She wouldn’t eat and was in a lot of pain.

I was anxious in the afternoon wanting to talk to the Hematologist and get some questions answered.  Finally at 5 pm he was ready to talk to me at the exact same time my brother Jason and his daughter McKenzie came to visit.  Perfect!!! *Tender mercy*.  Ashtyn doesn’t like to be left alone so I directed them into her room and went to a conference room with the MD. We talked for an hour.  I was told that since Ashtyn didn’t have either A.L.L or A.M.L the plan was likely to treat her for a month as if she had A.L.L and see if she responded.  If she did then they would go forward with the A.L.L protocol.  If she didn’t respond then they would try a mixture of A.M.L and A.L.L treatments.  I was blunt about my motherly instinct feelings. “I know nothing about cancer but I don’t believe she will respond to the A.L.L treatment. I don’t know what she will respond to.  My guess is that she is going to give you a run for your money and eventually get a bone marrow transplant.”  I hope I’m wrong.

For now, Ashtyn’s condition is perplexing and a mystery. The doctors have spent many hours on the phone Saturday making calls around the world discussing the appearance of Ashtyn’s cancer cells in the bone marrow.  They want to discover the mystery and accurately diagnose her cancer before starting treatment.

During the past 3 days I have learned quite a bit.  But one thing stands out to me right now and that is the importance of facing this challenge with optimism.

Gordon B. Hinckley once said, “We have every reason to be optimistic in this world.  Tragedy is around, yes.  Problems everywhere, yes.  You can’t, you don’t, build out of pessimism or cynicism.  You look with optimism, work with faith, and things happen.”

9 responses to “The Road To Diagnosis”

  1. Thank you for the wonderful update. I am so sorry you and your family are having to go through this. I have fond memories of Ashtyn carrying Amira around the Poulsens backyard at Britney’s graduation. She is such a sweet, happy and caring girl. Not an hour has gone by that I haven’t thought of you, Jason and both your families. My heart and prayers are with you. Sending lots of love and light your way!

    • Love to my big brother Lorin, and Sheryl and to sweet Ashtyn. Love to Jason and Suzanne.
      You are not alone!

  2. i know i have told you this already, but i am here with you holding your hand the whole way. although, their diagnoses may be different i know the pain and fear of the unknown, the uncertainty of the thought of losing a child, and the difficulties in letting it all go and handing it over to the Lord. I am thinking about you every second of the way. My heart and soul are with you. Every prayer of ours is with you and your family. I am so thankful that our experience can help you along the way, at least for you to know that we are here with and for you guys. Belle is going to be supportive of Morgs tonight and help her with the sibling part of it all. we love you guys so much.

  3. Thank you for doing this blog to keep us all updated. I find myself wanting to call or text you to see how Ashtyn is doing but I don’t want to bombard you. I’m thinking about you guys each day and I pray that you will get some answers about which type of cancer this is! You have such a positive attitude and I’m really learning a lot about you in seeing how you are dealing with this struggle. I miss you and can’t wait till we are back to our old routine. Love u lady! Xoxoxox

  4. We are sorry to hear about this. Hope they find out what she has so they can treat for the right one. Love and Prayers are going out to all of you to be strong for her.

  5. My heart goes out to you and your family! As a chemo kid myself, diagnosed with Non-Hodgkins Lymphoma at the age of 9, reading this blog brings back so many memories. So many tests…..lumbar punctures, bone marrow aspirations, blood work, scans, etc. Waiting for the diagnosis is the hardest part. It took 3 months for them to finally diagnose me, and even when we found out it was CANCER, at least we could then go forward with a plan of attack. I too had a broviac catheter. It was so nice to no longer be a pin cushion. Although I was scared (afraid no one would want to be my friend if they found out), had to endure a lot of pain, missed my first half of 5th grade, etc. I often think about how hard it must have been on my parents to see their little girl going through all of that while still having to deal with everyday life.
    My thoughts and prayers are with your family and cute little Ashtyn. -Trisha Ü