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family

beautiful Ashtyn

By | Daily Life, Uncategorized | One Comment

My good friend, Lisa Harbertson Photography, took these photos of Ashtyn soon after we were released from the hospital following her bone marrow transplant. We knew Ashtyn’s hair would grow back and we wanted to capture her as she was at that moment. I am so grateful for these photos of my brave girl.

If you like these photos of my sweet girl, go to Lisa Harbertson Photography’s FB page and give her more LIKES, she is an amazing photographer…
https://www.facebook.com/lisaharbertsonphotography
You can also find her website at www.lisaharbertson.com
Below are her words and photos about Ashtyn…

“This is Ashtyn and I am blessed and lucky to call her my friend. I have known her since she was born. My husband and I met her parents when we moved next door into our first apartment as newlyweds. 14 years ago! We became bosom friends. When Ashtyn and her 2 siblings were babies and toddlers they filled up a big hole in our hearts caused by infertility. We loved them like our own children. Years have passed and life is busy, distance in miles has come between us, we have had 4 children of our own (hole in heart is gone thank you to the heavens!) – but we will ALWAys have a special place in our heart for these children. When Ashtyn was diagnosed with a rare form of leukemia this past February, our hearts were broken and humbled in prayer for this sweet girl. The things Ashtyn at 12 years old has endured will be more than many of us endure and overcome in a lifetime. Her current health and continued life has only come about with modern medicine and lots and lots and lots of prayers and faith. If you want to be inspired and strengthened, read her story in her own and her mother’s heartfelt words at Ashtyn’s Army.

Ashtyn was recovering from her chemo and bone marrow transplant and was barely home from the hospital when she asked me to capture her in photographs. I really have never felt more honored as a photographer. Not honored that I was asked, but honored that I had the privilege of spending time with her and photographing her at this significant moment in her life. She had beat cancer. Overcome the odds. Was living proof of miracles. When I was alone with her in the room I really felt like I was with an angel. I know that’s what an angel would be like. I asked her to write a few things on paper. She couldn’t write so I wrote for her. After all the pain, grief, and trial she’s endured, she told me to write, “God is Good.” What an example. She walked into my studio as feeble as a 95 year old lady. She had her throw up bag next to her the whole time. We took lots of breaks for rest. In the picture by the tree we were cheering and screaming “you beat cancer!!” – it took her all the energy she could muster to lift her arms up high. It was the middle of Summer and she was shivering with cold and needed a blanket. Yet! Yet here is this 12 year old girl, with a smile on her face and a true sparkle in her eyes. Angel Sparkle!! Like I said, lucky to know her, lucky to spend the evening with her.

I love you Ashtyn. You have made more of an impact on my life than you could ever know. Now you go girl and travel many more roads and watch many more sunsets! You Are Strong.”

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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.”

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

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

In Her Own Words

By | Daily Life, Inspirational, Trials, Uncategorized | 18 Comments

Ashtyn Susan PoulsenFROM ASHTYN:
I was at school and didn’t feel well.  I felt like collapsing so I called my mom to pick me up.  She came in and I told her I needed to go to the doctor.  We went to the Holladay Instacare.  I was really scared because I have always hated getting poked with shots.  They poked me five times trying to get some blood to get answers.  Finally they told us to go to Primary Children’s Hospital.  I was flipping out and crying.  When I went home to get my stuff, I was really scared to see doctors, get more pokes, and I didn’t want to spend the night.  Who wouldn’t be scared of the hospital?  Seriously!  My Grandpa Poulsen gave me a blessing.  I do not remember any words but it gave me more comfort than what I had.

After the blessing we went straight to the car and headed off with our stuff.  My mom drove her car.  I went in my dad’s car, just me and him.  We talked.  He said that whatever happens was meant to happen.  That gave me even more comfort so I was calm and peaceful.  When I got to the hospital they gave me one poke to get more blood.  They told me that it could be mono or leukemia or aplastic anemia.  That took all of my comfort away and I was crying and hoping that I wouldn’t have leukemia.  The doctors kept talking about leukemia and that made me even more frustrated.  Then they told us to spend the night.  I thought I would only spend one night and go home in the morning.

A few days later when I found out I had leukemia I cried.  I was scared to be in the hospital longer and I didn’t know what to do.  I felt lost and couldn’t feel the Spirit.  But after a few days I realized that leukemia is not as scary as you think it is.  The word is scarier than what it really is.  I knew that I would be better soon and that God would give me strength to do whatever I had to do to get better.  Not that it’s not scary but it’s not as scary as I thought it would be.

I learned that I will lose my hair.  They need to give me medicine so I can get better and the medicine will take my hair.  I am willing to give God my hair and He will give me strength for whatever they do around here.

My bone marrow procedure was the first time I had a procedure with falling asleep.  I was scared but at the end it really wasn’t anything.  Now that I know what kind of things they do here I am prepared for more procedures and I am prepared for anything….except the NG tube.  Before my CT scans I had to have an NG tube to give me liquid needed for my CT scan.  It was one of the worst… actually it was the worst thing I have had to do here so far.  Now they tell me to have 1500 calories a day.  If I don’t do a very good job at eating the calories, I will have to have another NG tube.  I am trying my very best and forcing food down me.  Even though its hard eating, I think it’s worth not having the tube.  The tube is awful!  Today I felt so full and nauseated.  I threw up around 5pm.  Throwing up is still better than having an NG tube.  I will not give up because I know that I can prove these doctors wrong.  After I threw up, I let my stomach settle for about an hour and then I had some KFC macaroni and cheese and mashed potatoes.  I didn’t throw up again tonight.

I hate this place. A lot.  I am so annoyed when doctors come in my room.  I hate when the doctors come in, sit down, and talk to me.  It seems like their mouths never stop moving and it annoys me.  I sometimes feel stuffy because my room is so small.  I feel I need to breath a little.  I hate being closed in.  I just want to go outside and take a breather.  That sounds nice, just to go outside.  I hate the fact I am a patient.  I don’t like getting so much medicine.  I do not like some freaky nurses.  I hate when hospital people come in and ask me personal stuff and they never seem to leave.  It’s just not cool.  I don’t like being hooked up to an IV pole.  I hate eating so much.  It seems like I am always eating or my mom is always nagging me to eat.  I don’t like throwing up but sometimes in the end it feels better.  I hate the idea of all of this hospital crap.  I hate all the medical words.  I hate how I am woken up in the middle of the night to go to the bathroom.   I hate being away from home and family.

I like visitors and all the cards that people write me.  I like the stuffed animals and presents.  I like to be able to sit in bed all day… well maybe not.  I like that I’m not needing to do any school right now.  I like the thought that I will go home soon…. I mean eventually.  I know that everyday I am here, I am another day closer to being done with this sickness.  Everyday I am here is a day closer to being able to go home.  I haven’t been bored because of all the presents and stuff people have given me.  I know a lot of people are supporting me, loving me, and praying for me.  It gives me more hope and makes me want to fight harder because I can’t let down the Army.  Thank you for all the support and love that you send me.  I am glad to have such wonderful people beside me.  That’s amazing how strangers are reading about me and are concerned about me.  It’s awesome to have friends to lean on and know they’ve got my back.  I love when my family comes to visit.  I love their support and love for me.  As much as I love my siblings, I try not to think much about them.  It makes me so sad to think about them and makes me miss them more.  My mom and dad are always there for me.  My mom is always here in the hospital with me and my dad tries to be here as much as he possibly can with his work schedule.

Sometimes I feel sad.  Sometimes I feel scared.  Sometimes I feel energetic and fired up to do this.  Other days I feel hopeless.  But at the end of the day, I feel ready for whatever’s going to come to me next.

I know that God gives me strength every day and He helps me in everything I do.  He understands what I am going through.  I know angels are surrounding me and protecting me.  I can just feel it.  I know that Heavenly Father has a plan for me.  I know something good is going to come out of this.  I know everyone’s prayers are helping me.  Prayers work.