Tag

diagnosis

Heading Back

By | Daily Life, Round 2, Trials, Uncategorized | 18 Comments
Hanging At Home

Hanging At Home

From the moment I heard that Ashtyn had cancer, I never believed the path would be easy.  I understood her journey would be a roller-coaster.  I knew I needed to cherish the happy times.  During difficult times I knew I needed to have hope that good times would come again.  This week was a good week.  Two nights ago I said to Ashtyn, “I’m happy. Are you happy?”  She replied, “I am happy because I choose to be and because I am at home.”  Isn’t that true?  First, we have to choose to be happy.  Second, we have to be grateful for what we do have.

At one time or another, life is hard for everyone.  It can be difficult to find joy during the rough times.  However, it can also be difficult to find joy during the good times, because we are just anticipating the next difficult time.  I suppose that is the definition of pessimism.  The problem with being pessimist is that it clouds our ability to see the blessings we have.  Ashtyn is learning to find joy in the journey.  During rough and disappointing times she can hopefully be grateful for what she does have and remember good memories.

Ashtyn has had a few really good days and has felt more happy with each day.  She left the hospital Sunday and has really enjoyed her time at home.  She wasn’t allowed to leave the house but didn’t seem to mind.  Every day she became more and more social.  Tonight she had a couple friends over and hung out with people all day.

On Tuesday, two days ago, I took Ashtyn to the hospital to get a bone marrow aspirate. It was the second time she has had that procedure.  Using a drug called propofol, Ashtyn was put to sleep.  While asleep the oncologist inserted a needle into the bone marrow in her back and withdrew a sample of the fluid portion.  The bone marrow aspirate shows how many and what kind of blood cells are in the bone marrow.  The procedure gives information needed to determine how well Ashtyn responded to chemo and what the next best course is for her.  She was nervous before the procedure but afterwards said, “I want to do that again.”  Apparently she is an expert now and propofol made her feel loopy and funny.  She liked it.

Tonight I got a phone call informing me of the results of Ashtyn’s blood work she had drawn  today from a home health nurse.  Her complete blood count showed that her white blood cells had not come up much and her absolute neutrophil count was 100.  Not much improvement since finishing chemo February 14th.  An hour later I got a phone call from an oncologist.  I could tell right away from the tone in her voice that the news was not good.  She explained that Ashtyn’s bone marrow still is 85% leukemia cells.  The A.M.L. chemotherapy treatment she went through for 30 days was not the right treatment for her even though it is the typical treatment to start with.  Her leukemia cells continue to look different than any cancer cells the doctors have ever seen.  They are neither A.M.L. or A.L.L. but continue to be undifferentiated leukemia.  The doctors now want to try the A.L.L chemotherapy protocol.  Normally kids can do A.L.L treatment at home but because Ashtyn is already immunocompromised she has to do the chemo in the hospital for at least four days because of her increased risk of infection.  The A.L.L is a 28 day course of chemo that has less side effects such as mucositis.  Side effects are more steroid based such as moodiness and hunger.  Of course the risk of infection is always present.  The doctor informed me that Ashtyn needs to be back at the hospital tomorrow morning.  They will start the new treatment protocol.  In two weeks Ashtyn will receive another bone marrow aspirate to determine how she responds.  If the cancer cells continue to be near 85% of her bone marrow cells, the treatment will be stopped and she will then be put on an intense chemo protocol used for “difficult relapse cancer cells.”  If she shows improvement with the A.L.L treatment, they will finish the 28 day course and again check the bone marrow aspirate.  The goal is to get rid of all her cancer cells (remission) and give her a bone marrow transplant.  Why a bone marrow transplant once the cancer is gone?  Bone marrow transplants are more successful after remission.  In her case, a transplant is needed because the probability of cancer coming back (relapse) after remission is high.

I hung up the phone with the doctor at 6:30 p.m. and cried.  I wasn’t surprised at the news.  I have always known Ashtyn’s body was going to kick cancer the hard way.  I always knew she was going to give the doctors a run for their money.  But it still broke my heart.  To think she still had so much cancer after a month of suffering was disappointing. To know that after 39 days in the hospital and only four days home, Ashtyn had to head back to the hospital.  Ashtyn had a friend over so I chose not to tell her at that time.  I wanted her to enjoy her friend.  I wanted her to enjoy her night.

After packing up clothes, hospital entertainment, and belongings to decorate her room, I finally told Ashtyn at 2 a.m. that she needed to go back to the hospital tomorrow.  “What?” She said.  “But I just barely got used to being home.”  She cried for a moment and then sure enough thought of her blessings.  “Well, it’s a small room so we can spend more time together. And I will be able to eat a lot since the medicine will make me hungry.  And it won’t be as bad as last time.  I can handle 1 1/2 weeks in the hospital if I can come home for a longer period of time.”  That’s awesome!  The doctors said she’ll have to be in the hospital at least four days.  Four days?  We will plan for 1 1/2 weeks and be pleasantly surprised if it is earlier.

Ashtyn: “I am grateful that friends from school visited me this week.  I am grateful my cousin Mckenzie came over yesterday.  I am grateful I am eating with no problem.  I am grateful that I got to relax tonight and watch Amazing Race with you.  I am grateful for the time I spent home.  I am grateful to do the A.L.L treatment because it will be easier on me.  I am grateful for being able to spend time with my family.  I am grateful we get to be in the same room at the hospital.  I am grateful I will still have an appetite.”

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 echocardiogram 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 diagnisis, 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.”

The Beginning…

By | Daily Life, Inspirational, Trials, Uncategorized | One Comment

Wednesday January 30th started with a prayer. “Heavenly Father, thou knows Ashtyn has missed school and has been sick for a couple of weeks.  She has been pale and has had very little energy.  Last night my mom called to pass on a message from my dad that he really feels Ashtyn needs to see a doctor.  You know how my dad is.  He isn’t much of a talker but when he does, he speaks with wisdom.  You know how I am.  I think she just has a flu that she still needs to recover from.  Please help her to get better or tell me what to do. In the name of Jesus Christ, Amen.”

And off we went as usual.  I drove Chandler (13 yo) to Butler Middle School at 7:40 am, picked up my adorable nieces Millie (3 yo) and Ruby (1 1/2 yo) from my sister Alisa to babysit for the day.  Went back home, fed kids breakfast, and hopped in the car at 8:30 am to take Ashtyn (12) and Morgan (10) to Canyonview Elementary.  Ethan (6), Millie, Ruby, and I went back home, got ready for the gym and headed to XCEL Fitness.  At 11:30 am I was ready to head out of the gym when I got a phone call from Canyonview Elementary School telling me that Ashtyn wasn’t feeling well and needed to be picked up.  My heart raced in a way it never has when I get a sick call from school.  My sister Jen was at my side and with a worried face I said, “I’ve got to get Ashtyn to a doctor.”  She asked, “Do you think she could have Leukemia?”  “Yes.” I answered.

When I walked in to the sick room at the school Ashtyn was laying on the bed.  After a few days of protesting a doctors visit, with tears in her eyes she said,  “Mom, I think I need to see a doctor.”  “I know sweetie.”

I got a phone call from Chandler letting me know he didn’t feel well and asked if I could pick him up from school.  “Perfect timing, I will be right there.”  By this time it was 12:10 pm.  Ethan’s school started at 12:15 pm so I dropped him off to Kindergarten at Butler Elementary. With urgency in my heart, I dropped Chandler, Millie, and Ruby to my moms and headed for the Insta-care with the knowledge that Ashtyn needed blood work done to find out if she has mono or Leukemia.

We sat in the waiting room for about an hour and once it was Ashtyn’s turn to see a doctor things started happening with no delays.  Ashtyn was truly terrified  when it took three painful needle sticks to get blood work.  The results quickly came back with a very low White Blood Cell count and low hematocrit. I called Jason to let him know we were heading to Primary Children’s Hospital.  It was 2:30 pm. Jason just so happened to be off work driving home and his dad just so happened to be 5 minutes away and headed to my house to give Ashtyn a blessing. ** I have never believed in “just so happened”.  There are constant tender mercies from God all around us everyday showing us his continual and constant hand in our lives.** I drove Ashtyn home, got her in comfy PJ’s, grabbed her favorite blanket, Justin Beiber pillow and a few other things.  Lorin, Jason’s dad, gave Ashtyn a blessing.  I don’t remember a word he said but it doesn’t matter. I know the power of the Priesthood is the power of God and blessed Ashtyn with what she needed at that time.

Once we got to Primary Children’s hospital at 3:30 pm things happened quickly.  The ER took every blood test they needed, but she was calmer with the needle sticks than she was at the insta-care.  Ashtyn: “I trust them more here.”  We first met with the NNP who talked to us about cancer.  We then talked to the Hematologist who also was leaning towards cancer.  Ashtyn was hearing about cancer when we didn’t even know she had it.  In my mind I wasn’t going to assume she had anything until tests came back.  As far as I knew, maybe she had a severe virus and yes maybe it was Leukemia, but I didn’t want to jump to any conclusions.  By 7:30 pm Ashtyn was taken to the 4th floor and given a room in the ICS Immunocompromised floor.  Ashtyn was scared. She wanted to know what was wrong with her.  She didn’t want cancer.  She didn’t want to be in the hospital.  She wanted to be in school. (“What? You never want to be in school. How perspectives change.”) She wanted to be home.  However she felt how I felt, nervous for the unknown but peace in the heart.

Once settled the visitors came and so did her smile, and even her laugh.

We will face this challenge with upbeat spirits.  There will be times for crying, anger, fear, frustration, doubt, and anxiety. There will also be times for peace, happiness, smiles, calmness, and fun.

James E. Faust, “Everybody in this life has their challenges and difficulties. That is part of our mortal test.  The reason for some of these trials cannot be readily understood except on the basis of faith and hope because there is often a larger purpose which we do not always understand. Peace comes through hope.”