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Prayers

As good as it gets in the hospital

By | Daily Life, Looking Up, Prayers, Uncategorized | 18 Comments

I’m sitting with Ashtyn watching Ratatouille and am feeling such joy.  Yes you heard me, joy.  Joy because of the day Ashtyn had.  Joy for the support that surrounds us.  Joy because of peace.  Joy because of hope.

Today was the best day yet. What made today so good?  Nothing went wrong.  On top of that, the day had a peaceful, fun vibe and Ashtyn accomplished much in her preparation and empowerment.

Last night right before going to bed we talked about the possibility of getting an NG tube today because she hadn’t been able to eat enough calories on her own.  She was adamant about not getting a tube.  Ashtyn had already had an NG tube placed when she got contrast for her CT scan and hated it so badly she didn’t want to do it again.  She had a cup of Top Ramen by her bedside.  With determination in her eyes and disgust in her face she forced a few bites of the noodles.  In a matter of minutes she threw it all back up. “Ashtyn, don’t worry.  We’ll try again tomorrow.”

She woke up this morning at 10 a.m. feeling good.  First thing on the agenda was to eat.  For breakfast I ordered some applesauce and toast.  She ate the apple sauce without a problem and forced down a piece of toast.  An hour later I sat with her entire healthcare team while they were on rounds outside her door. They discussed her progress and plan.  I asked if they would give her one more day to prove she could eat enough calories on her own.  They agreed though they didn’t think she could do it.  I was skeptical as well.  After talking with the doctors and dietitian I went back into the room.  I’m not proud to admit that I tried talking Ashtyn into an NG tube.  “I don’t want you to be stressed all the time trying to eat enough.  The placement of an NG tube isn’t that bad if you relax.  Once it is in you won’t have to stress about eating all the time.  You can eat as much as you want and whatever calories you are short, they will infuse into your stomach over night.”  She would have nothing of it so we figured out something fattening that would likely be tolerated to start building up her calories.  Cheesecake.  I hopped on to facebook and asked for everyone to pray that Ashtyn’s stomach would be able to handle 1800 calories.  She then began to eat her cheesecake with cherry sauce.  Ashtyn ended up eating the entire piece. After she was done with the cheesecake, she had an hour before her Dad brought a pinto bean burrito with rice, cheese, and sour cream from Cafe Rio.  I was amazed to see her eat ⅓ of it.  Those are big burritos!  Later for dinner she had 300 calories of Dibs ice cream bits.  My friend Rain brought her another Cafe Rio burrito for dinner.  (Apparently because I left her other burrito out in room temperature for more than an hour, I had to throw it away.  That’s good to know.)  Unfortunately after her Dibs, she wasn’t hungry for the burrito so I put it in the fridge for tomorrow.  For Ashtyn’s late night snack she had 3 popsicles mashed into a slushy.  (I took three red popsicles and separately put them in the microwave for 20 seconds.  I then mashed the wrappers a bit and poured the thick slush into a cup and threw away the sticks.)  That was a 210 calorie snack.  By the end of the day I estimated that Ashtyn consumed nearly 1500 calories.  Success!   Yesterday’s prayers were answered that gave her the desire to shower and eat.  Today, prayers were answered that calmed her stomach.

Yesterday I mentioned that right now is the time for Ashtyn to prepare for battle.  I sense that it’s my time to prepare as well.  I have come to rely on the support of Facebook messages, blog comments, texts, phone calls, visits, and the prayers of others.  I would panic if I didn’t feel rallied around.  I am strong for Ashtyn because everyone has been strong for me.  Today I had a couple moments where I got a glimpse of what it would feel like if I was doing this without Ashtyn’s Army.  The lonely feeling caused sudden panic.  I could not do this without the support I am getting.  I feel lifted by every single communication from each of you.

There is so much more I want to share with you.  I want to tell you about her inner strength that she is beginning to recognize.  I want to share with you the growth I have seen in her in only one week.  There are exciting coping skills she is learning.  I’ve noticed independence and emotional stability that I want to relay. There is clear proof that our prayers are being answered, but I am having such a difficult time writing, thinking, and feeling…. I’m tired.

I’ll end with this for now:

A few hours ago I asked, “Ashtyn, you had a good day today, right?”  She said matter of factually  “As good as it gets in the hospital.”  I started “lecturing” as I commonly do, “Well I want you to remember today.  Today was a really good day.  You will have lots of good days like these.  When you are having a really bad day, please remember today, and know that no matter what, you’ll have good days again.”

It doesn’t matter what religion you are.  A prayer is a prayer, and they are all being answered.

Daily Prayer

By | Prayers, Uncategorized | 5 Comments

Ashtyn will need your daily prayers.

Specific prayers of the day:
1. That she will not suffer horribly from MUCOSITIS: painful inflammation and ulceration of the mucous membranes lining the digestive tract, occurring anywhere along the gastrointestinal tract, and mouth. Oral mucositis is a extremely common and often debilitating complication of chemotherapy.
2. To enable her the energy to shower today which decreases likelihood of infection.
3. Calming stomach and desire to eat so she wont have to have a nasogastric tube tomorrow for feeding.

I know that every single prayer is heard and with faith God will show his hand daily. The thought that your one prayer won’t change anything is not from God. It will and has made a difference. Words can not express my gratitude for the prayers from Ashtyn’s Army.

The Road To Diagnosis

By | Daily Life, Prayers, Trials, Uncategorized | 9 Comments
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.”