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Looking Up

How We Got Home

By | Home Life, Looking Up, Triumphs, Uncategorized | 13 Comments

Saturday we really expected Ashtyn to be able to go home.  She had met most of the discharge requirements.  She was awake and alert, walked well, ate and drank enough, didn’t have significant pain, her temperatures were normal, and overall she looked really good.  Thursday and Friday her white blood cell count (WBC) went up.  Though the increase was slight, it was still a sign that she was no longer declining.  In my mind, she was fully ready to go home.

At this point in Ashtyn’s recovery, the doctors were not worried about how many WBC’S Ashtyn had, they just wanted to see the counts trending up.  In order to go home Saturday, her blood work had to show some sign, any sign, that she was still improving.  Ashtyn knew how close she was to going home.  She was hopeful as was I.  To prepare, I packed up a lot of her things Friday night to be sent home.

Since I always stay up until around 4 am, I decided to not go to sleep until 5 am Saturday morning so I could see her lab results.  The results came back at 6 am.  My heart dropped when I saw the numbers.  Not only did they not go up, but the monocytes went from 3 back down to zero.  Bummer.  I went to sleep thinking about how Ashtyn was going to take the news. When she woke up I told her that she would not be able to go home that day.  She cried.  I laid by her and rubbed her back in silence.  I wanted her to be able to express her emotions and get it all out.  She cried for about 7 minutes and then was done.  Instead of sitting in sorrow, she ordered breakfast, ate Frosted Flakes and peaches, and watched The Cosby Show.  For lunch she texted her dad for him to bring her a bean and cheese burrito, crazy bread, gummy worms, a cherry Slurpie, and seasons 5 and 6 of The Cosby Show.

Jason arrived at the hospital an hour later with all she asked for.  Chandler had never before visited Ashtyn in her hospital room and came up with Jason.  Ashtyn’s cousin Hailey and Aunt Wendy came to visit as well.  After eating crazy bread we walked the halls and showed them around the unit.  The rest of the night Ashtyn spent with her dad watching The Cosby Show while I went to Chandler’s hockey game.  Throughout the entire day Ashtyn tried to stay upbeat.  Though there were a couple times during the night when she cried, I could tell she was trying not to dwell on it.  I received this text while I was at my house putting my other kids to bed: “So, I have a sudden craving for chili.  Should we get some tonight so I can have some for lunch tomorrow? Cause we can’t go to the store cause it will be Sunday.  Also, if I don’t go home tomorrow I will tell Grandma Hosenfeld to bring some salmon from the party they are going to have.  I just had an entire hot chocolate and so I have a lot of energy to watch Cosby with you when you get here!”

Sunday morning Ashtyn had blood taken again for labs and again I saw the results at 6 am.  Her WBC’s had not gone up or down.  The doctors had always informed me that she needed to have two days in a row of improvement in her labs to go home.  I laid back down in bed with Ashtyn and started formulating the fight I was going to present to the doctors later that morning.  “Why can’t she just recover at home and continue getting blood work done with a home health nurse?  She is just as safe in her home as she is in the hospital as far as infections are concerned.  I will keep her away from crowds, anyone sick, and use a lot of hand sanitizer at my house.  She has to come back Tuesday anyway for a bone marrow aspirate so can’t we just see how she does at home for two days?  She ate so much yesterday and is feeling good.”  I was fired up and ready to present my argument.  I was almost too fired up so I was glad it was only 6 am so I could sleep a couple of hours and mellow out a little bit before talking to the doctors. At 10 am two doctors woke me up.  “We saw the labs.  They weren’t really good but we think she can go home today and recover further there.”  Did I hear right?  “She can go home today?”  Yes was their reply.  I didn’t have to petition or plead Ashtyn’s case.  Sweet.  “Ashtyn, did you hear what the doctors said?”  Irritated she said, “Mom! I am sleeping! Don’t wake me up.”  Ashtyn had become good at using a coping mechanism of sleeping while doctors talk because she never wanted to know what they had to say.  In her perspective, it’s always scary stuff they talk about.  After the doctors left I asked the sleeping tween, “Do you want me to tell you the news now or later?”  Without opening her eyes and still irritated she said, “If I can’t go home today, tell me the news later.”  I replied, “You can go home today.”  She was suddenly awake, smiling, and in a good mood.

It took a few hours to pack up her things and get discharge orders.  Four hours later we walked out the door where her siblings were there to greet her.  She was relieved to go home.  The night seemed to be a calm and relaxing reunion.

At 9:30 p.m. all the kids were in bed for the night except Ashtyn.  She wasn’t sleepy, so what did she do?  She sat on the couch with a comfortable blanket, a Slurpie and treats, and watched The Cosby Show.  At 1 am she climbed into my bed.  She didn’t want to sleep in her own bed but rather with me.  I gave her several pills to swallow and an IV  antibiotic.  By 2 am she was asleep next to me.  Obviously it takes time to transition into hospital life and it takes time to adjust back to home life.  I’m up at 4 am again.  In a few hours I’ll be taking my kids to school.  Hopefully Ashtyn and I can get back on schedule.

As Ashtyn was falling asleep in my bed she said,  “I like that the hospital room was small.  You were always right there and we could spend more time together.  It’s different than a house that is big and you don’t have to be in the same room.”

Ashtyn: “Today I am grateful that I got to go home today.  I am grateful I went to my Grandma’s house.  I am grateful that I got to eat dinner with my mouth not sore.  I am grateful for movies.  I am grateful for a medical tech that was nice to me the whole time at the hospital.”

It is good to be home.  We are going to soak in the vacation of being home and enjoy every moment.  

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Getting Ready to Get Out of Here

By | Daily Life, Looking Up, Triumphs, Uncategorized | 15 Comments

I knew the first week Ashtyn was diagnosed with cancer that it was going to be a long road.  I also knew that there would be bad days, good days, scary days, peaceful days, unpleasant days, enjoyable days, dark days, and fun days.  Today was a good, peaceful, enjoyable, and fun day.

Nothing spectacular happened… well actually it was spectacular to me.  For her noon breakfast Ashtyn ate 2 silver dollar pancakes, a few grapes, and half of a chocolate chip cookie.  For lunch she ate 1/4 of a Lone Star bean and cheese burrito, 2 pickles, and some juice.  For dinner she finished 3/4 of the bean and cheese burrito and drank some hot chocolate.  For her 2:30 am snack, she ate a pickle.  Now Ashtyn only has to have IV fluid nutrition running through her central line 12 hours a day instead of 24 hours.  That means 12 hours during the day she isn’t hooked up to an IV pole!  That’s so cool!

Ashtyn walked around the unit without an IV pole for the first time ever.  When walking, her endurance is improving.  A few days ago she could only handle walking for about 10 minutes.  Now she can walk for a bit longer.  The most difficult part about walking is leg pain.  For some reason her legs feel sore and the muscles are painful when she walks or moves.  Physical therapy worked on stretching exercises for her to use.  She has never allowed the integrated medical team to work with her.  Integrated medicine provides what I call “pleasant hospital extracurricular activities” such as massage, aromatherapy, and yoga.  Today she allowed an integrated medicine doctor to massage her legs when in the past she always said no.  She enjoyed it and will ask the doctor to use more pressure next time.  Ashtyn has also refused to have them do yoga with her.  Now that she is experiencing so much leg pain after being stuck in bed for so long, she is going to let yoga specialists come to her bed 3 times a week when she comes back for her second round of chemo.

This entire month has been a learning process on many different levels.  One level is learning what we will do differently during the next round of chemo.  We figured out that obviously Ashtyn needs to move and stretch her legs more during the month hospital stay.  I need to move and stretch her legs throughout the day when Ashtyn is unable.  Another thing we learned for next time is how we are going to decorate her hospital room differently.  When we come back we are going to decorate her room with beautiful nature pictures.  Maybe pictures of colorful flowers, serene greenery, and spectacular sceneries.  She also wants to hang a few pictures of Christ rather than Justin Bieber posters.  Ashtyn mentioned that during the next round of chemo she is going to be even more brave.  As long as her mouth isn’t sore, she’ll want to talk to her siblings on the phone more often.  She may even be settled enough to express gratitude more often for all the small acts of kindness that surround her.

Every morning the first thing I naturally ask the nurse is, “what was Ashtyn’s white blood cell and absolute neutrophil count this morning?”  Today her WBC count was up slightly with a ANC remaining at zero.  I’m not sure when Ashtyn will be able to go home but I am hopeful it will be within a few days.  Tonight I started packing up her room.  Six bags were filled and sent home.  As I was gathering her items, I was so touched by the support she received during this first round of chemo.  The gifts, cards, prayers, messages, and Facebook “likes” have brought so much strength.  I feel horrible because I can’t thank everyone individually.  I feel bad because I haven’t been able to write thank you notes for all the kind deeds that have been done.  Those who dropped off gifts and cards have not been thanked.  Personal gratitude has not been expressed for the 30 plus meals that have been dropped off to my house.   Are people wondering if their efforts have gone unnoticed?  Believe me, everything has been noticed and greatly appreciated.

Ashtyn was a lot of fun to be around today.  I wish each of you could spend time with her.  She is funny and has an amazing smile.  Today she wheeled and dealed that if she did ME the favor of taking a shower without much complaint, I would have to massage her legs. She joked around, talked a lot, and smiled.  But the stinker will not let me take a picture of her.  Right when the camera comes out, she won’t comply with a “happy” photo.  “Mom, I’ll take one when we get home.  I will even take one when I am in the car… or even in the wheelchair getting pushed out of here.”  No amount of bribing would get her to let me post a picture of her.  I threatened, “I’ll ground you.”  Confidently she said, “You can’t ground me! I can’t go anywhere.”  My reply, “I can ground you from The Cosby Show or from your Tum-E Yummies juice.”  It didn’t work.  Stinker.  But just to let you know, I am going to post happy pictures of Ashtyn the second I can manipulate her into letting me.  She is such a tween.

So here I am as happy as if I were in Disneyland.  I am hanging out with my daughter watching hours of The Cosby Show.  What parent gets to spend 24 hours a day, seven days a week with their 12 year old?  I feel very fortunate.  This weekend, like every week since being in the hospital, I am going to go home for a few hours and give Chandler, Morgan, and Ethan huge hugs, tons of kisses, and absorb every second I am with them.  I hope Ashtyn will be able to join me this time and that we’ll get to stay home for a little while.  

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.

From Ashtyn

By | Daily Life, Looking Up, Spiritual, Trials, Triumphs, Uncategorized | 20 Comments

Beautiful AshtynI was Ashtyn’s scribe tonight as she shared some of her thoughts:

I don’t think Ethan and I, or Morgan and I, or Chandler and I, are going to fight much anymore.  We are closer now even though we aren’t together.  I feel it in my heart.  I can feel them with me.  I’m glad it’s me doing this instead of them.  It breaks my heart to think of them having to go through this.  I hope that none of my family members have to come here.  I don’t care if it’s an adult or kid, nobody deserves to be here.  It is the hardest thing ever.  I hate this place so bad.  It’s not fair.  If I saw family members here I would feel sad and it would break my heart.  I couldn’t stand it if Ethan had to go through this.  He wouldn’t be able to handle it.  I would hate to see Morgan have to go through it too.  She wouldn’t be able to handle it either.  Chandler would be able to handle it better than Morgan and Ethan, but wouldn’t handle it very well.  I am able to handle it because I know more about what leukemia is.  I know a little bit more of the routine here.  Before this, if you asked me if I could handle cancer, I would say “no.”  I couldn’t imagine it.  But now I know I am strong.  I know that I’m worthy of feeling the Spirit and feeling God.  He is the reason I can do this.  I think after I am done with this disease, things wont be so scary anymore.  Before this I couldn’t do shots. It would scare me to do doctor’s check ups.  But now shots are nothing compared to this.  A shot or a check up would be like the smallest thing compared to what I am going through here.

It’s scary here.  It is scary knowing you are in the hospital getting all this medicine and all the IV stuff.  It is scary having doctors concerned about you and talking about scary stuff.  They talk about a bunch of medicine.  They talk about the worst things that can happen.  The scale of things that can happen to me or my body is pretty big.  There are a lot of bad things that can happen.  I’m not talking death and stuff.  Bad things like infections that I can’t fight off, or fevers, or being here a long time.  The physical therapists tell me about what can happen if I don’t walk so it makes me want to walk everyday.  It scares me to walk because I might fall.  My muscles are so weak and aren’t working properly.  It’s hard to walk even a couple of steps to the bathroom.  I need to sit down a lot.  I can’t really move my legs very well.  When I walk in the halls with physical therapy I have to wear a mask that irritates my face that has a rash on it.  I don’t like when nurses and doctors talk about NG tubes.  It’s scary because if I don’t eat enough I will have to get one.  I really want my white blood cells to go up so I can eat and drink.  I really hope I get as big of an appetite as I can.

It’s hard to have the energy to play games.  Basically all day I watch TV, movies, and lay in bed.  I am trying to do all I can so I can take as little medicine as possible.  I don’t take pain medicine anymore for my mouth and throat.  I don’t like being hooked up to stuff.  After showers it feels good to not be hooked up to the IV pole with stuff going into me.  Laying in bed is not that comfortable.  I have to change sides a lot because it hurts my rash if I lay on one side for a long time.  The hardest part about being here is being away from family and knowing that I am in a hospital.  But what gets me through it the most is knowing that I will go home and that God will never leave my side.

It’s scary looking at myself in the mirror without hair on my shoulders.  Thinking about being outside and not having the wind blow my hair or having to pull my hair back kind of scares me.  Sometimes it makes me feel ashamed that I have to be here.  Shaving my head was one of the hardest things.  It made me feel awful.

Once there is hair on my head again, the disease is gone, and I don’t have to worry about cancer,  I will be a better person, sister, and friend.  If anyone goes through a hard trial, I sort of have more experience.  Whether someone is in the hospital or just having a bad day, I know most feelings now.  I know how it feels to suffer awful pain.  I know how it is to be mad about yourself.  I know how it is to be mad at God.  I know what it’s like to look in the mirror and turn away in shame.  I know what it feels like to be trapped, not able to go anywhere.  I know what it feels like to be weak.  I even know how it is to question if there is a God, if the church is true, and if the scriptures are true.  I remember being so sick and yelling at God for not helping me.  I’m kind of mad about being mad at Him because if He wasn’t here, and if I didn’t know about the gospel, I would… I just can’t imagine what it would be like.

I know there is a God and only one true God.  I love Him.  He comforts me everyday.  When I got chemo I couldn’t feel Him but I know He was and is there.  I am so grateful that I know the gospel is true.  I am grateful that I can be worthy to feel the Holy Ghost.  Now I have 100% more faith in Him.  I had a bad trial last year when my parents got divorced.  I thought that would be the worst possible thing that would happen in my life.  I thought I had so much faith and now compared to then, I have more faith than I have ever had.  I feel Him with me.  When I can’t feel Him, I hate it.  I just have to know that He is there, He loves me, and I will be OK if I have faith in Him.

How is this trial going to change me?  I think I will feel better about myself.  I’m going to be stronger.  I will be able to help people with trials and I will be able to give them advice.  I will be a better missionary.  I will have more faith and more love in my heart.  I will have a stronger testimony in the gospel and in Jesus.  I’m glad that someone knows exactly what I am going through.  Every pain and sorrow that I feel, Jesus Christ has felt it.  I am glad that I have someone to talk to because He understands everything.

What was I like before this trial?  I hated my hair.  I hated how it was thick and I had to straighten it everyday.  I should have been more grateful to even have hair.  Before this experience I felt like I was a wimp.  I couldn’t do sports very well.  I couldn’t get shots without freaking out.  I couldn’t stand the thought of needles.  I worried about the smallest things that really don’t matter anymore.  I didn’t have faith in myself.  I didn’t think I could do what everyone else did.  I thought I was bad at everything.  I thought I stunk at running.  I didn’t run the fastest, even though I wasn’t the worst.  I didn’t have faith when we were doing PE.  I didn’t think I could kick the ball far in kickball.  In my brain I would say “no” before I even tried anything.  I didn’t think I could talk to boys or new people.  I didn’t have much faith before tests and thought I would fail.  I thought I was ugly.  I thought I didn’t have cute clothes or cute shoes.  But now that I think about it, I had more confidence than I realized.  Looking back, I did talk to boys.  I remember conversations I had with them.  I remember talking to new people and even made a really good friend that was new this year.  I didn’t realize how many friends I had or how many people cared about me.  I always thought someone was making fun of me behind my back or talking about me.  I thought I was hated.  Now I realize I was worrying about stupid things that really don’t matter.  Once you are in the hospital and going through this, you realize what you had that you never recognized.  I think I never had confidence.  I never believed in myself the way I should have.  I didn’t think I could do anything right.  I didn’t have faith in myself.

After this I think I will have a completely different point of view in life.  I won’t care so much about how I look or how my hair will be.  I won’t try to impress people by being someone I’m not.  I will still care about friends and who I come in contact with.  I will have more faith in myself and know that I can do anything.  At school I will know that a lot of people care.  In PE I will probably be able to do anything that everyone else is doing.  I won’t say “no” before I try.  I won’t be so insecure.  If I do something wrong, it won’t be as big of a deal.  I will just know that I am beautiful.  I will know that I am strong.  I won’t doubt God again.  I will be able to trust Him more.  And I’ll probably not want as much junk food as I did before because now it all sounds gross. Ha Ha.

My mom told me today that when I was really sick (I can’t remember being so sick), I told her that my great grandma Holt, who passed away in November, visited me a couple times. In the post my mom wrote that I said “my great Grandma told me that everything is going to be okay.  She told me to have faith.  She told me to focus on today, hope for a better tomorrow, and know that God has my back.  She told me that I am strong.  She told me not to listen to what people are saying in my room because no one knows what my body can do like I do.”  Thinking that my great Grandma said those things gives me a little bit more determination to go home.  It is kind of like a boost to my spirit.  I believe angels are here guarding me and protecting me.  I can feel it.  I know dead family members have been with me.  They have protected me and helped me get through another day.  I know everyone’s fasts and prayers have helped me.  I probably sometimes don’t know how the prayers have helped me but I know somehow they have.

My rash hasn’t really improved yet but it hasn’t gotten worse.  I still can’t eat or drink much. My legs feel weak. My arms are itchy.  I know everyone prays for me and fasted for me Sunday.  I know the fast will help me soon.  I haven’t lost my faith by me not getting better right away.  I know eventually I will get better in God’s time.  Thank you for your support and for the fasting and prayers for me.  I know each person is helping me.  Each prayer has helped me be able to be stronger.

Faith

By | Inspirational, Looking Up, Triumphs, Uncategorized | 9 Comments

I have always found myself looking ahead and planning for the future.  Change has never been a fear of mine.  When things don’t end up how they were envisioned, I adapt.  Naturally I look at Ashtyn’s health the same way.  I don’t know the future, though I can’t help but think about it.  It doesn’t matter what I think will happen, however I can’t help but look ahead.  What do I see for the future?  I’m preparing for Ashtyn to get a bone marrow aspirate in a few weeks that will show she didn’t go into remission with the first round of chemo.  She will then have another month of intense chemo for 10 days with 20 days hospital recovery.  We will then pray that she goes into near remission and then prepare for a bone marrow transplant in May.  I’m preparing myself for a very difficult summer with an extremely tough recovery from the bone marrow transplant.  However in August, Ashtyn and I will return home to further recover from the bone marrow transplant over nine months.  We will then enjoy a wonderful summer of 2014 and rejoice in her health.  We’ll see.

When I first heard that Ashtyn had cancer some thoughts came to my mind.  “Suzanne, this isn’t yours.  God is the orchestrator.  Hand it over to Him.”  Gladly.  I instantly handed over my daughter to God knowing He was completely aware of her and had a plan.  I was not in charge.  It was also clear that this was not about me.  I was simply a member of the orchestra with a part to play, just like everyone else.  I trusted God completely.  I had faith in His will.  I have since been surrounded by peace and comfort.

No, I am not hiding sorrow, despair, anger, or built up stress.  I have always been a “what you see is what you get” person.  When I get upset, you’ll know it.  Sure, at times I feel irritation, exhaustion, and worry about Ashtyn.  Other times I’m bummed that I won’t be able to sleep in my own bed for months or disappointed that I’m not as involved with my other kids as I’d like to be.   However, those feelings come and go quickly.  Most of the time I just feel peace.

As I observe Ashtyn, there seems to be a peace about her as well.  I can see in her countenance that she is being comforted.  She is not in bed suffering as you would think she would be.  Yes it is difficult, however she is tolerating everything with strength and calmness.  She doesn’t want anyone crying for her because she isn’t crying for herself.  She doesn’t want anyone to doubt because she doubts nothing.

Today I asked her brother Chandler (13) how he is feeling.  He said that he has felt “temperate” during this entire month.  He credits the Spirit for that feeling of comfort.  Morgan (10) has felt peace as well.  Her heart is comforted and is only concerned about Ashtyn.  I assured Morgan that Ashtyn truly isn’t suffering as much as one would think.

The word “faith” keeps coming to my mind.  Faith is the reason I am optimistic and at peace.  Faith is the reason Ashtyn has strength and comfort.  Faith is the reason why Chandler feels calm.  Faith is the reason Morgan is joyful.  Faith is why our burdens seem light and we do not fear.  Faith that we know God loves us, is aware, and has a plan.  Faith that God listens and answers prayers according to what is best for us.  Faith that God is merciful and would never allow us to suffer in vain.  Faith that Christ will lighten our burdens.  Faith in ourselves that with God we can do anything.

Faith that “All these things shall give thee experience and shall be for thy good.”   D&C  122:7

Faith that “All that we suffer and all that we endure, especially when we endure it patiently, builds up our character, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of God.” Orson F. Whitney

“Faith in God includes faith in His timing.”  Neal A. Maxwell

“Fear is the opposite of faith. Do not be afraid! I do not fear.” Boyd K. Packer

Faith just makes life easier and more joyful.

Ashtyn’s daily gratitude journal:  “I am grateful for cars, my house, TV, cell phone chargers, and that I live in a neighborhood close to a good children’s hospital.”

24 Hour Focus

By | Looking Up, Prayers, Spiritual, Uncategorized | 12 Comments

I couldn’t say it better than Shelley.  “I can’t wait to dedicate our family’s fast for Ashtyn this Sunday so that her white blood cell count will go up and that she can go and spend time with her family, and that her rash and sores in her mouth heal quickly. I have never been so excited to look forward to a day of fasting.  Ashtyn’s Army, here is our chance to fast. I think it would be nice if we all close our fast at the same time and try to get everyone to kneel down (on Sunday) at 5:00 pm and say a prayer. There is power in numbers. Then, let’s sit back and watch as miracles happen!”

Ashtyn is in need of your prayers and fasting.  We are asking anyone who can to fast and pray Saturday into Sunday.  She is in need of three specific blessings.  1. For her rash to go away.  2. For her throat to feel better.  3. For her total white blood cell count to go up and her ANC to rise to 1000.

Please pray that her full body rash will disappear so that she is no longer itchy and uncomfortable.  Pray that her throat will heal and stop hurting so she can eat and drink without pain or difficulty.  Also, Ashtyn really needs to produce enough white blood cells to go home soon, recover further at home, and be able to go to Disneyland in a couple weeks before having to return to the hospital.  The doctors agreed that if Ashtyn’s absolute neutrophil count (ANC, the number of white blood cells that fight infection) increases to 1000, she can go to Disneyland.  Ashtyn has a ways to go.  Currently her ANC is zero.  Our hope and prayer is that Ashtyn will be able to recover from this round of chemo enough to have an ANC of at least 1000.  We would love for her to enjoy a week at home followed by four days in Disneyland before heading back to the hospital for another month of chemo.  As Shelley said, there is power in numbers.  With your faith, fasting, prayers, and positive thoughts, I expect to sit back and watch as miracles happen.

The ODells’ commented,  “Ashtyn and all the family, we are offering our prayers at daily mass (and during the day and night) for a speedy recovery and alleviation of the pain and discomfort. We keep in touch through your daily postings and marvel at the outpouring of love from “your Army.”  We love you all and look forward to the posting of you walking out that door and saying “Disneyland, here I come!”

That’s our goal.  “Disneyland, here we come!”

“There is power in unity and there is power in numbers.” – Martin Luther King

Ashtyn’s daily gratitude journal: “Today I am grateful for socks, the ability to be able to walk, comfy pajamas, nice nurses, and my mom.”

Ribbon Tying to Show Support

By | Inspirational, Looking Up, Triumphs, Uncategorized | 8 Comments

Today I was woken up by a phone call from a reporter for Fox 13 News Utah.  From 11:45 am to 1 pm Canyonview Elementary School had plans to tie lime green ribbons around the school to show their support for Ashtyn.  The news channel was covering the story and the reporter wanted to interview me before heading to the school.  She hoped that Ashtyn would want to talk but I knew she wouldn’t feel up to it.  She came to Ashtyn’s room, asked me a few questions, and headed to the school.

Ashtyn’s dad was at the school and had this report. “The school staff, students, friends, and family gathered in green shirts to show their support and love for her.  It began with many friends and loved ones tying green ribbons around every tree and pole on the front of the school grounds.  As each grade finished their lunch all of the kids would come out and tie green ribbons on the fence spelling out Ashtyn’s name.  Many of the kids asked how Ashtyn was feeling and when she would be returning to school.  Some of them gave gifts to be delivered to her, many of them wanted to make sure Ashtyn knew how much they love and miss her, and two boys in her grade even took the time to write and sing a guitar duet they had written for her.  A beautiful banner was hung on the front of the school and the school marquee had a message of encouragement as well.  For those people who were there it was overwhelming to see all the love and support people have for Ashtyn and their strong desire for her to overcome this challenge.  But with every person who was there we know there are countless others who would have loved to be there if possible or who support Ashtyn in other ways.  It was an outward expression of love for her that was overwhelming.  For those of you who were there and for all those of you who were unable to attend we want to express our gratitude for everything you are doing to help Ashtyn recover.  It does not go unnoticed.”

Here are more messages from friends and family that I received:

“Happened to drive by Ashtyn’s school today.  Started crying.  So amazing.” Friend Maria

“I thought it was awesome!  The fence with her name in it looks amazing as does the front of the school.  I pointed it all out to my 9th grade daughter on our way home and she was very moved.  For me it was really special since my kids went there and it was such a coming together of various groups of special people in my life.  Parents like me who no longer have kids there, my fellow gym rats, and of course all of the kids! It is beautiful!” Friend Krista

“I took off part of the end of school so that I could make it.  It was worth it.  It was just really special.  She truly has an army behind her.  Her family, friends, and anyone who supports her are amazing.  You could tell that it wasn’t just that the kids got to climb and jump on the fences but that they really cared and want Ashtyn to get better so that she can come back home.  Every day I see kids walking home with big green A’s on their backpacks or ribbons.  There is also green ribbons on mailboxes everywhere.  It’s also great to see the way that she has inspired everyone.  The entire time I was there I overheard conversations talking about the strength your blog gives them, and how Ashtyn lifts the spirit of their children and their families.  I hope she knows how beautiful she is whether her head is shaved or not, it doesn’t make a difference.” Friend Amber

“Wish Ashtyn was feeling better.  She would have liked to have seen the kids at school cheering her on with chants of ‘let’s go Ashtyn!’” Family Jared

“It was really touching to see everyone come to support her. She has some really great classmates. Everyone was very eager to tie a ribbon for her.” Friend Jennifer

“I was so overwhelmed by the army for Ashtyn.  Our school is limed all the way.  There were so many people there.  It was overwhelming and so awesome. The kids were so awesome and excited.  The kids came in and loved the decorations. My heart is so full tonight for a beautiful young lady who is going through a tough battle. I love this amazing family so much.  There was so much love there for you and Ashtyn and your family.  How can someone not feel the compassion and embrace the spirit that is going on?  It makes you burst with the spirit and energy.  You and Ashtyn were there in spirit. I know Ashtyn feels my love.  I know you feel my love.” Staff Roberta

“I had a wonderful experience today. It was so uplifting to be with a group of people who were outwardly showing their support for a very brave young lady. I had an epiphany while I was there. Yesterday, I spent time whining that I had too much to do. Today, I gave gratitude for all my many blessings.”  Staff Shelley

“I was overjoyed by the turn out and support and donations of ribbons.  I loved seeing the kids and their love for Ashtyn.  It truly warmed my heart. I was excited to see friends and family and neighborhoods showing support.  So much talent.  Alone, trials are impossible but together as Ashtyn’s Army we can do hard things.” Family Kristi

“I think everyone felt good being able to be together and see and feel the unity of love and support that we all feel for Ashtyn, you and your family. It seemed to be very worthwhile for the kids. I could see that they care a lot about Ashtyn and it was a good way for them to show that they care.” Neighbor Julie

“I thought it was amazing how all those people came for Ashtyn, and how many caring hearts are out there.  I knew Ashtyn had an awesome army there for her, but honestly the ribbon tying blew my mind!  Ashtyn is an awesome girl and deserved every bit of what we did today.  Seeing all of those people there for her made me so happy for her.  Really it didn’t make you feel bad for her, it made you happy there were so many smiling faces while helping Ashtyn.” Classmate Nikki

“It was very inspirational and everyone was supporting her.” Classmate Nicole

“I thought it was really amazing and made me feel really happy that so many people are supporting her and in her army! It was so fun to go and tie the ribbons and see all those bright green shirts! I know Ashtyn will feel so glad that she has everyone in her school supporting her.  I really loved it!” Ashtyn’s friend Kaylee

“I thought it was heart warming to see what the parents put together for Ashtyn, and that so many students were happy to participate.  I was glad to see everyone putting so much effort into showing their support for Ashtyn.” Classmate Abigail

How was Ashtyn’s day?  Simply said, she doesn’t feel well.  She did tell me five reasons why.  The worst thing she’s dealing with is a painful throat that always hurts.  There continues to be sores in her mouth.  Her feet and hands feel hot and prickly.  The rash that covers her body is annoying and itchy.  And her body is so tired.  Ashtyn doesn’t complain much.  She’s pretty quiet throughout the day and keeps herself occupied mostly with sleep and the Disney Channel.

Today she went on another walk in the hall.  Her legs got tired easily and her feet started burning and itching.  Still she walked.  Ashtyn wanted to try eating and drinking.  She tried a couple sips of root beer, one nibble of a Milano cookie, one bite of an animal cookie, and considered a sugar baby.  It’s not much.  Still she ate and drank.

“Today I am grateful for sleep, pain medications, Biotene Mouthwash that keeps my mouth clean, pillows, and soft food.” Ashtyn

Today I am grateful for Canyonview Elementary school, the staff, students, friends, and family members that made the ribbon tying a special and successful event.  I am grateful to be a member of Ashtyn’s Army and numbered among the large group of people known already for their faith, hope, love, goodness, tenderness, and positive perspective.

Classmates

Ethan

Morgan

AshtynsArmyBanner

Chandler

Alisa-and-Millie

Consider the Blessings

By | Daily Life, Looking Up, Triumphs, Uncategorized | 12 Comments

Ashtyn looks so much better than a week ago.  She isn’t nearly as sick, however she still feels crummy.  Of course she does.  I have no idea what it feels like to have no white blood cells, low platelets, and have a body that is recovering from chemo.  Her throat and mouth continue to hurt.  Swallowing is still painful.  She does try to drink a sip or two of water a day.  She has a rash that is affecting most of her body.  Her white blood cell count hasn’t gone up.  The thought is that she’s probably making white blood cells but they are being used to heal her mouth and throat before being counted in her blood tests.  Most of her medications were stopped once she no longer had a temperature.  She continues to be on a couple antibiotics, IV Benadryl for her rash, one medication for nausea, and a narcotic every two hours for pain.  Today she had another platelet transfusion.  IV nutrition is continuously going through her central line since she is still unable to eat or drink.  On the up side, she is no longer being annoyed by thick mucous in her mouth and lungs, and she is walking and talking well.  The last time she left her room was when she visited with her brothers and sister, posted under “Ashtyn’s Siblings Come To Visit.”  After 16 days she left her room and walked in the halls with physical therapy.  You go girl!

Ashtyn Walks Down Hall

Ashtyn Walks Down Hall

We are both on a nocturnal schedule.  Right now it is 3 am and Ashtyn is wide awake watching the Disney channel.  She normally sleeps all day, with occupational or physical therapy waking her to do some sort of activity at 2 pm.  She is never happy being woken up.  After 4 pm Ashtyn’s body finally wakes up and doesn’t really fall back asleep until after 2 am.  The medical staff informed me that this “habit” isn’t abnormal.  Good.  That makes me feel less irresponsible.

Ashtyn does look forward to when she gets to go home.  Whether she goes home in a week or two,  it seems far distant for her.  “It seems like my throat will never feel good to where I can drink without pain.  It’s hard to think that I will actually be able to sit in a restaurant and drink without any effort.  It doesn’t seem like I will ever get to where I feel good.”  Being the talker that I am, I always have something to say, “Ashtyn, remember when you would get sick from time to time throughout your life when you didn’t want to go to school? You didn’t feel up to doing anything except sit around.  Eventually you always would feel better and back to yourself.  I know you aren’t feeling well right now.  Soon you will.  You will then feel up to talking to people on the phone, having visitors, and FaceTiming friends and family.  You will want to look in the mirror and notice how beautiful you are.  You will enjoy coming up with cool fashions you can do with different hats.  You will feel well enough to be happy and have fun.  It will come.”  She agreed.

I decided to start a nightly routine having Ashtyn tell me five things she is grateful for that day.  Tonight was our first night so she came up with ten things.  Ashtyn is grateful…

  1. “for the Broviac and that I didn’t get a port.”  (A lot of leukemia patients get a port that sits underneath the skin.  There are pros and cons to each.  With a port a needle poke is required to access it at least every week.  I’m not an expert on ports.  Ashtyn is just grateful for her Broviac central line because she never has to be poked with a needle.)
  2. for blankets.
  3. hydrocortisone cream that helps my itchy rash.
  4. that one day I will be able to drink.
  5. for beds.
  6. for tissue.
  7. for lotion.
  8. for technology to text, call, and FaceTime.
  9. for Chapstick.
  10. for prayers.

President Thomas S. Monson reminds us, “We live in a unique time in the world’s history. We are blessed with so very much. And yet it is sometimes difficult to view the problems and permissiveness around us and not become discouraged. I have found that, rather than dwelling on the negative, if we will take a step back and consider the blessings in our lives, including seemingly small, sometimes overlooked blessings, we can find greater happiness.”

Ashtyn’s Army

By | Daily Life, Looking Up, Prayers, Triumphs, Uncategorized | 23 Comments

Ms. Fricker, one of Ashtyn’s teachers at Canyonview Elementary school, commented “Know the saying ‘it takes a village to raise a child?’  Well, it takes an army to kick cancer’s butt out of that village.  Help show Ashtyn she has an amazing army behind her. She is a tough little girl and is fighting one heck of a battle.”  She is completely right.  Ashtyn is fighting one heck of a battle.  More importantly, it is going to take an army for Ashtyn to triumph.  I have never been more sure of anything.

I sometimes fear the spark in the Army will die down.  I panic to think what we would do without you.  I am certain of Ashtyn’s outcome if the Army loses faith or ceases praying for her.  But the moment the fear comes it is replaced with faith in the Army.  I know we won’t be abandoned.  Ashtyn won’t be forgotten.  We have soldiers on the front line fighting.  We have soldiers standing back with prayers in their hearts waiting for the call to attack.  And when the most fierce attacks are needed, I have no doubt that the entire Army will stand together united in strength and faith to pray, serve, and send all their positive energy with determination to not quit until that battle is won.  The Army will then stand on guard for the next battle.  And so it will go until all battles have been won, the war is complete, and Ashtyn stands triumphant with complete health.  But health is not all she will have gained.  She will look around at the thousands of members of her Army.  She will see thousands who have hearts like God and love like her Savior.  She will see thousands with faith that will change the world.  Thousands with hope that will change lives.  Thousands with goodness that seeps into countries and states.  Thousands with tenderness that improves communities.  Thousands with perspective that strengthens families.  Thousands with purety that softens homes.  And then she will know that because of her strength and faith and the strength and faith of her Army, lives were changed for good.  Her life will be changed for good.  And then she will take her health and all that she learned from you, and will press forward to the next war she’ll have to fight.  She will continue on with life triumphing over all that is in store for her.  There will be no stopping her.  And there will be no stopping you.  Together this world will be forever better and forever changed.  That is what Ashtyn’s Army will do.

Who is a part of Ashtyn’s Army?  You.

Ashtyn’s Army includes family members, friends, and strangers.  However we are all “family” bonded together, united in a common cause.  The Army comes from all cultures, religions, and walks of life.  We couldn’t have it any other way.  We need religious and non religious.  We need spiritual and non spiritual.  We need young and old, male and female, rich and poor.  That’s what makes the Army powerful.  Power comes from the unique gifts and talents each individual has to offer.  Power comes from each individual heart and mind.

One thing the Army has in common is each member has a good heart.  Hearts that are sensitive and tender to the suffering of others.  Hearts that rise up to do good.  Hearts that rely on faith in all it’s unique forms.  Hearts that care about others instead of only thinking of themselves.  Hearts that have hope for a better world.  Hearts that know this world is not as dark as some might wish us to think.  Hearts that know the power of prayer.  Hearts that know the power of optimism and positive thinking.  Hearts that are confident and strong, willing to do what it takes to make a difference.  Hearts that know even the smallest act of kindness or the shortest prayer or the slightest bit of hope is power enough to cure a child of cancer.

Thank you for being a part of Ashtyn’s Army.  Ashtyn has recieved letters, messages, cards, balloons, blankets, necklaces, fun activities, books, stuffed animals, and gifts of all varieties.  I have family and friends waiting for word to come to the hospital to entertain, uplift, and support Ashtyn.  There are others actively bringing me meals and taking care of my needs.  Many people work behind the scenes, giving of themselves and sharing their gifts and talents.  Ashtyn’s elementary school has rallied around my family.  Chandler’s school staff are supporting him. There is a photographer documenting milestones and an IT computer expert building and managing her website.  We have amazing friends and neighbors who bring dinner to my children every night.  Each Monday my house gets cleaned by two dear women.  My family tutors, entertains, and carpools my kids to their various activities.  There is a friend who moved into my house to be the at-home caretaker.  Others invite my kids on fun outings, give hugs, and provide them with needed attention.

There are church congregations around the world remembering Ashtyn.  Her name has been added to prayer chains in different religions and is on the prayer lists at L.D.S. temples in many locations.  She has been enrolled under the special patronage of Our Lady of Lourdes in France and Illinois.  There are many families who pray for her morning and night.  Children include Ashtyn in their prayers daily.  Fasting and prayers have been dedicated to her with her specific needs in mind.  Hundreds think of Ashtyn and hope the best for her.

Ashtyn has heard from people all across Utah and the Salt Lake Valley.  Support has also spread around the country and across the world.  She has heard from people in California, Idaho, Nevada, Arizona, Colorado, Missouri, Georgia, Virginia, Florida, Washington DC, upstate New York, Quebec Canada, Ghana West Africa, Botswana South Africa, Japan, Argentina, and Venezuela.

I am in awe at the strength of Ashtyn’s Army and how it has changed her life already.  Every member is valued. Every member is needed.  Indeed it does take a village to raise a child just as surely as it will take an army to kick her cancer’s butt out of that village. Thank you for being apart of Ashtyn’s Army.

“Cancer may have started the fight, but we will finish it.”

Perspective

By | Daily Life, Looking Up, Trials, Uncategorized | 11 Comments

Ashtyn and I have different perspectives of time. We have been in the hospital for 27 days and it has gone by very fast for me. There is not a moment of boredom where I can kick up my feet and wonder what I should do with my time. There is always something to do. When Ashtyn was really sick her needs were the same whether it was day or night. I slept when the opportunity presented itself. We never had more than a couple of hours of sleep without an interruption of one kind or another. Days and nights were intermingled with sleep and activities. After so many nights of interrupted sleep and days of constant physical or mental tasks, I am tired. Very tired. I think I could curl up in bed and sleep for a couple of days, begging that no one interrupts my sleep.

Ashtyn shared her perspective of time today, “I’ve been in the hospital a long time. It seriously seems like a year. Every day goes by slow.”

Facing cancer means that you face physical and emotional challenges. The week Ashtyn was diagnosed with cancer, she felt and had to deal with emotions she had never had to conquer before. From my post “God’s Orchestra” on February 5th, I wrote: “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.”

The two weeks following she became very sick from chemo. She had physical pain that she hadn’t faced before. She remembers the pain and not being able to speak or swallow. From the post “Relying on What I Know” I wrote, “Ashtyn is sick. Very sick. She can hardly talk. Can hardly open her eyes. Can hardly walk. Can hardly sleep comfortably. She can’t eat. Can’t drink. Can’t laugh. Can’t cry… Today the doctors informed me that she has the worst case of mucositis, the worst side effects from medications, and the worst complications from chemo.”

Now that Ashtyn is feeling physically better with each day, she has to again deal with more emotional struggles. Her temperature, heart rate, and respiratory rate are normal which gives her more of an ability to focus on the ramifications of cancer. Now that she isn’t on oxygen, throwing up, coughing up mucous, or having continual medical staff around her, she has the strength to contemplate every moment she is in a hospital bed. Now that her eyes are wide open and she isn’t sleeping all day, Ashtyn has the time to long for the life she once knew.

Last night I talked to her about shaving her head. The only hair remaining was a thin layer that seemed to be holding on for dear life. Obviously she needed to shave all her hair so when it grows back it will do so evenly. This week seemed to be the week to do it. I validated her feelings by letting her know that it was going to be very difficult. I suggested that instead of just having me and her dad there, that she invite a few family members to be by her side to support her in this milestone. At 9 pm we gathered together in her room. I got special permission to have more than two people at the bedside. She had her two uncles Jared and Casey, her two aunts Alisa and Kristi, her dad, and me there to get her through it. Though she had agreed with the plan several hours previously, she sat on the couch curled up in a ball, “I don’t want to do it.” She was holding on to the small amount of hair she had, not wanting to let it go. What would she be letting go of if she let go of the remainder of her hair? Maybe the last bit of hope that she wouldn’t actually have to be bald. Maybe the last amount of hope that she doesn’t really have cancer but instead has a bad case of mono. Maybe it is holding on to the last thing that makes her who she is, when everything else has been taken away. Whatever the reason, she didn’t want to do it. There are a lot of things she hasn’t wanted to do in the hospital but she has always faced the challenges calmly without kicking and screaming, and does what she has to do.

Ashtyn didn’t want anyone to shave their heads to support her. It wasn’t a need she had. I don’t think she wanted to look at others bald since that wasn’t normal to her and she didn’t want to be reminded of her own baldness. To help Ashtyn get used to the electric razor, her uncle Jared sat on a stool for her to practice on. She used a number 7 hair clipper to trim the back of his head. After several swipes she didn’t want to do anymore. Her uncle Casey finished trimming the back of Jared’s head to even it out. After Ashtyn was able to handle the razor and watch Casey’s shaving skills, she was as ready as she was ever going to be. She sat on the stool and bravely allowed Casey to shave her head. She didn’t fuss, complain, or cry. She just took it. Afterwards she laid on the couch with a blanket, closed her eyes like she was asleep, and didn’t say a word. Jared sang a song with his guitar about her old and new hair. She did quietly laugh a couple times. When the song was done, her support team gave her kisses and left. We sat in bed and laughed a few times while watching Modern Family. At 2:30 am we fell asleep together in her hospital bed without ever speaking a word about what had happened that night.

Today she is struggling emotionally. She knows she needs to be happy at times. She knows she needs to be optimistic and find joy in her journey. She knows the importance of not forgetting who she is. She is a happy, funny, beautiful, smiling angel. She knows not to lose that light within herself. But not today. Today is a day to feel emotions that are real and understandable. “I am bummed just like anyone else would be.” Today she doesn’t want visitors. She wants to be left alone. She doesn’t want to talk. She doesn’t want to be talked to. I can tell that she is going through something she feels she has to do alone. Is she feeling anger, depression, sorrow, remorse, irritation, or discontent? Probably. However, I can’t ask her about it. It is my role to sit quietly in the corner, giving her space and time to feel what she needs to feel. But as she faces her emotions quietly within herself, I know she doesn’t feel alone. She does know there are hundreds of people that care. She does know there are hundreds of people that pray for her and support her. Ashtyn may need to sit in her hospital bed, by herself, in silence. She may feel she needs to be left alone without reading your encouraging words, or seeing people around her bed, or feeling the hugs of others. She may want to have time alone to go through the realization and depression of cancer and losing her hair and everything else she has lost when cancer came into her life. But as she faces her emotions “alone” for now, she knows she is not truly alone at all.

So here we sit in silence. I don’t know what she is thinking about or what is going on in her heart. Whatever she is going through, I know she’ll figure out for herself how to face the future. I believe she will face it exactly how she’s been doing it so far, with faith, optimism, and courage. She will rediscover her strength and abilities. She will recognize her inner and outward beauty. She will continue to lean on her Army for support, love, and prayers. She will press forward with hope and faith, remembering “Don’t give up. Don’t you quit. You keep walking. You keep trying. There is help and happiness ahead. Trust God and believe in good things to come.” Elder Jeffery R. Holland