Tag

Tender Mercy

Prayer is Part of Our Routine

By | Daily Life, Round 2, Uncategorized | 7 Comments

After spending 45 out of 48 days at Primary Children’s Hospital, Ashtyn and I know the routine.  Attending, fellow, and resident doctors, nurse practitioners, registered nurses, child life specialists, anesthesiologists, pharmacists, house keepers, dietitians, physical and occupational therapists, techs, volunteers, psychologists, integrated medicine specialists, and parents of other patients are becoming familiar and conversations are developing with our new friends.  A parent of another patient went to Walmart and picked me up some Propel.  Our morning nurse woke us up with hot chocolate.  The night nurse brought us Bill Cosby comedy CD’s to listen to.  Other nurses that aren’t assigned to care for Ashtyn come in to say hi and ask if she needs anything.  These acts bring joy to my heart as everyone is taking such good care of Ashtyn.

Monday morning Ashtyn was wheeled downstairs to get the chemo drug Methotrexate injected into her cerebrospinal fluid through a lumbar puncture.  As far as Ashtyn was concerned, it was the same experience as the two bone marrow aspirates she has had.  We walked through the same doors, into the same room, a nurse asked a few questions, and the anesthesiologist introduced herself.  The child life specialist, Lindsey, automatically knows to bring Ashtyn an iPad to play Disneyland Explorer while waiting.  Once in the OR, Ashtyn laid on her right side and a mask with the watermelon smell was placed over her face.  “Mom, I need you in front of me.”  I held her hand and squatted down so my face was right in front of her face while the anesthesiologist put Propofol into her IV.  She asked, “Are you putting it in?  How long until I fall asleep?”  Before I could answer, she was asleep.  After the procedure Ashtyn was taken next door where I was invited to come in and watch her as she slowly woke up.  I offered her a slushy.  “What flavor do you want? Raspberry lemonade or Root-beer?”  Even in her drowsy state she knew, “Raspberry lemonade.”  She has had the root-beer slushy numerous times, she must have wanted to try something different.  She can’t eat 12 hours before anesthesia so as always she woke up hungry and wanted chips.  After eating a bag of chips she was ready to head back to her room.  We totally have it down to a science.

Once she got back to her room she was exhausted for the rest of the day.  She didn’t seem to feel well and started having frequent restroom visits.  Within five hours her vigilant nurse decided to test her for C-Diff.  The results came back positive.  Her blood work from the night before came back as well showing high liver enzymes.  Whenever anything unusual happens, Ashtyn’s lack of medical understanding causes her to think the worst.  Several weeks ago when she heard she had pneumonia, her first thought was that she was going to die because her over 90 year old great grandpa died of pneumonia.  When she heard her liver was struggling, her first question was, “am I going to have to have a liver transplant?”

With the news of her intestinal bacteria infection and her struggling liver, I asked people over Facebook if they would specifically pray that the effects from C-Diff would be minimal and that she would overcome it quickly.  I also asked if people would pray that her liver would recover and be able to do what it needs to do.

The next day, Tuesday, I knew from the moment Ashtyn woke up that she was feeling better.  The entire day she had absolutely no signs or symptoms of C-Diff.  She didn’t experience stomach pain or intestinal difficulties at all.  The doctor also informed us that her liver enzymes had come down significantly to almost a normal level.  Of course Ashtyn’s C-Diff, liver, and her overall day was better because of prayer.  We both know that with prayers she will be blessed.  Each day there have been tender mercies from prayers being answered.  Our burdens have been lightened daily because of the prayers of others.

 

 

Progress

By | Daily Life, Looking Up, Triumphs, Uncategorized | 10 Comments

Ashtyn’s white blood cell count and absolute neutrophil count have not changed or improved from the time she started chemotherapy 32 days ago.  That is what we have been praying for.  But guess what?  It’s OK.  Ashtyn is doing good.  Really good.

Today her face is perfect.  Both the swelling and the rash are completely gone.  Today she brushed her teeth and her mouth is free of sores.  Her throat is feeling so much better.  She ate a tamale and started taking all her medications in pill form rather than IV.  Her rash is looking like it is healing.  Her heart rate and oxygenation haven’t had to be monitored constantly in awhile.  She hasn’t needed oxygen in days.  I don’t remember the last time she threw up.

Not only is Ashtyn progressing physically, she is also progressing emotionally and socially.  When Ashtyn was first diagnosed with cancer she didn’t understand the ramifications it would have on her life.  She then got sick and was unable to process the reality of cancer.  Once she started recovering from being so sick, she had the ability to begin processing.  She was able to start coming to grips with the impact cancer was having on her life.  The reality of her new life was starting to set in.  She had to start accepting that everything had changed.  Her appearance, daily activities, physical abilities, interactions, and even where she sleeps.  In fact, her entire view of life had changed.  Ashtyn needed time to transition into her new life.  She needed alone time to grasp going from one life to another.  There were emotions and thoughts that she needed to figure out for herself.  She needed space to absorb all that had happened, all that was happening, and all that will continue to happen.  This process of acceptance and realization will be continual and changing.  However, she is now beginning to have the ability to include people more fully in her journey.

Today I saw the happy, funny, spunky, and social Ashtyn.  She spent time talking to her  aunt Wendy.  What Ashtyn got out of the conversation the most was, “I need to start letting people back into my life.”  In the past the thought of her siblings broke her heart because she missed them so much.  She never wanted to talk to them because it would make her miss them more.  For the first time since being in the hospital, she talked to Chandler (13), Morgan (10), and Ethan (6) on the phone.  She had a huge smile on her face.  “Ethan, when I get home I’ll play with you OK …..  Yes, you can lay in my bed with me.”

Ashtyn walked around the unit tonight and was more social than ever before.  Instead of acting like walking the halls was a chore, she found enjoyment.  When leaving the room she headed to the front desk to see her favorite tech.  She liked walking past nurses she had now come to recognize.  We looked out the window across the Salt Lake valley and enjoyed looking at the night view.  We could see the Salt Lake Temple in the distance and reminisced about the two times she was able to go.  Walking back to her room she looked ahead to the future without fear and dread and said, “when I come back I want my room to be in the same pod (hall) that it is now.  It’s the fun pod and it’s kind of more secluded.”  We talked about how we need to shop for new room decorations for when she comes back.

I recognized today that patience really is paying off.  Ashtyn’s body needed some more time to recover and get prepared for going home.  She received two units of blood today, her body is gaining more endurance as the days go on, and she is recovering.  However, even more importantly, Ashtyn is emotionally and socially preparing to go home.  She is gaining confidence to be able to walk out the hospital doors without shame and to hold her bald head high, being proud of what she has accomplished.  She is finding herself and the joy that socializing brings to her.  She has always been a people person, the more around her the merrier.  She is finding that to be true again.

Ashtyn:  “Today I am grateful for temples, tender mercies – little blessings throughout the day like being able to walk and drink, President Thomas S. Monson and his talks I get to listen to, Temple square-it’s beautiful and I want to go there when I get out of the hospital, and Tum-E Yummies juice.

Elder Orson F. Whitney wrote: “No pain that we suffer, no trial that we experience is wasted. It ministers to our education, to the development of such qualities as patience, faith, fortitude, and humility. … It is through sorrow and suffering, toil and tribulation, that we gain the education that we came here to acquire.

We have been in the hospital for 36 days.  This experience has been far from a waste of time.

This Kind Can Come Forth By Nothing, But By Prayer and Fasting

By | Daily Life, Miracle, Prayers, Trials, Triumphs, Uncategorized | 11 Comments

My last post was written two nights ago.  Ashtyn’s health had been getting progressively worse with each day.  By Tuesday night she was on the verge of having high risk surgery to remove her appendix.  Diarrhea and vomiting seemed to be occurring every couple of hours.  She had lower lobe pneumonia with an increased respiratory rate and oxygen needs.  The color of her extremities didn’t look good.  Even though she was only getting a small amount of pain medication, she seemed more out of it than she should have been.  Ashtyn wasn’t able to talk well, open her eyes well, sleep well, or walk well.  She had even fallen one time because she got out of bed before I could get to her.  I was very nervous and wasn’t alone with my concerns.  The healthcare team watched her like a hawk.  She kept me and her nurse running constantly.  By 7:30 pm I was so concerned about her declining health.  I told the doctors I thought she needed to be move to the pediatric ICU.  PICU?  That’s the last place I normally would want her to go.  It’s a germ nightmare for a neutropenic patient with no ability to fight infection.  It’s also extremely uncomfortable sleeping in a chair when I have been spoiled by my couch-bed.  But I didn’t know what else to do as I observed the direction she was going.  The doctors considered PICU briefly but held on the idea.  I knew if she went downhill any further she would be moved and monitored in the PICU.  It then hit me what I had to do, call upon Ashtyn’s Army for prayers.  Enough was enough.  We needed to get her better.  I texted my family who suggested we fast.  Who would be willing to fast on a Wednesday and Thursday?  I had no choice but to ask because I knew Ashtyn couldn’t wait until Sunday.  She needed to start getting better right away.  I sent a Facebook message that read: “Because of how sick Ashtyn is I am asking anyone who is interested to fast for Ashtyn starting this afternoon or evening and ending Thursday.  She has pneumonia in her lower left lung that we don’t want to get worse.  She has appendicitis that we don’t want to get further inflamed.  We don’t want her to get an infection.  Mostly we want her to make white blood cells so her body can recover fully and then she will feel better.”

There was an immediate response.  Some started their fast right away.  Others’ prayers became more specific and fervent.

Tuesday night I laid beside her until 6:30 am.  She didn’t want me to leave her side. I described the night in my “Relying on What I Know” post: “She sleeps, goes to the restroom, suctions her mouth, sleeps, throws up, suctions her mouth, sleeps, coughs up mucus, throws up, sleeps, goes to the restroom, and on it goes.

After over a week of her getting worse she began to stabilize Wednesday.  I am not saying she got better.  I am saying she stopped getting worse.  With the start of fasting and prayers it seemed as if her decline had halted.  She did become more alert throughout Wednesday and for the first time in over a week she didn’t scare me one time all day.  She simply hovered in calm stability.  24 hours after asking for prayers and fasting, Ashtyn moved from being “stable” to slowly improving.  Wednesday night was restful.  She didn’t throw up all night.  Her trips to the restroom were minimal.  She was completely alert.  I had 4 hours of uninterrupted sleep.  On Thursday morning the first thing she did was get on her phone and with a great amount of effort and concentration she posted to Facebook  “Please fast and pray for me tomorrow.  I have so much mucus in my mouth that it hurts to eat or drink and I am SO thirsty. Thank you so much.” (I don’t think she realized it was already Thursday morning because she went right back to sleep after the Facebook status was posted.)  She clearly has faith.  She clearly has hope in her Army.

It is now early Friday morning.  All the 24 hour fasts, from those who did so, are over.  There have been 48 hours of prayers petitioning for God’s help with her immediate and specific need to get better.  I will tell you, your prayers and fasting have changed her course.  All concerns have dissipated.  She went from heading to the pediatric ICU to sitting up in bed alert and talking during the day.  At night instead of throwing up and getting up and down, she now sleeps restfully.  Ashtyn was heading downhill and now she is on the road to recovering from this round of chemo.

For 10 days Ashtyn’s temperatures have remained above 101 F after taking Tylenol and climbed to over 103 F before the next Tylenol dose was due.  Today? Her high temperatures were near 101 and decreased to 99.5 with Tylenol!  Amazing!

Ashtyn has not had the TV on for over a week.  Today the TV was on all day.  She started the day watching Soul Surfer.  Then she watched The Incredibles, Lion King, Princess and the Frog, and the Disney Channel.  Ashtyn fell asleep during each movie but it doesn’t matter, she had the desire to watch TV rather than lay in bed in silence.

She was awake a lot more today and talked quite a bit.  Her throat and mouth are still very painful when she talks or swallows.  However when she does talk her words are clear and lucid.  Today I didn’t have to keep the lights off and remind everyone to be quiet.  She was fine with noise and the stimulation’s of the day.  Her legs are steady when she walks and she is less shaky as time progresses.  (I do continue to stay behind her with my arms around her back as she walks to the restroom just to be safe.)  Today I was so excited when she asked to open a few presents.  She hasn’t had it in her to open any presents or cards since Valentine’s Day, which even then she was only able to open a few.  After I showered and got ready for the day she said, “Mom I like your shirt.”  That’s my girl!  Since becoming a preteen she is my fashion consultant because I am horrible at knowing what looks good and she has a really good eye for it.

For the past week I haven’t had very many visitors come because she has been so sick and time consuming.  Today I felt perfectly happy and comfortable having visitors.  Ashtyn had a nasal scope today to test for a sinus fungal infection.  She was completely calm and didn’t move at all when they stuck the camera down her nose.  (The test came back negative.)  Another miracle is she didn’t throw up or have diarrhea one time today.  Prior to today she had occurrences at least every two hours.  After many restless nights of sleep, Ashtyn is sleeping peacefully and didn’t need me to sleep near her.

I know it was because of fasting and prayer that Ashtyn triumphed over this most recent hurdle. That I am sure of.  Mark 9:29 “This kind can come forth by nothing, but by prayer and fasting.”  Thank you so much for all your thoughts, prayers, fasting, and positive energy.  I have been told by different people of different religions that they are praying and sending good vibes for Ashtyn.  Whether it is a prayer from a Mormon, Jew, Catholic, Protestant, or positive energy from a Buddhist, it matters not to me or the God in whom I believe.  He answers prayers and listens to all of his children.

I Could Not Have Planned It Better Myself

By | Daily Life, Inspirational, Looking Up, Uncategorized | 6 Comments

From the moment I felt a bone marrow transplant was likely, I have always thought it would be Chandler who would be the donor. Chandler sometimes has an intense personality that pushes Ashtyn’s buttons. Ashtyn has a completely different dramatic personality at times that pushes Chandler’s buttons. There are moments when love is felt for one another but the majority of the time they drive each other crazy. I know that if any of my kids need to connect, it is Ashtyn and Chandler. They are 19 months apart and are now learning that their bond is much stronger than they thought.

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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.”