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Perspective

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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coping

By | Daily Life, Round 2, Uncategorized | 3 Comments

On February 1st, two days after Ashtyn was hospitalized, I received a message from Brady, whose daughter Millie was on the same floor.

“Suzanne,
I’m very sorry to hear about Ashtyn. While I’m no expert, we’ve been dealing with this now for over three years, so I can give some advice on how to deal with it as a parent.

Millie was only four when she was diagnosed, so she was much younger than your daughter, but I still believe this holds true. Our children don’t fully understand what they’re facing. They gauge how bad the situation is by how we react. If we cry all day and are depressed, they will be frightened. If we are calm, confident, and tackle this task like it’s normal, they will feel the same way.

That’s not to say that I’m never sad – Millie and I have cried together many times. However, we are happy nearly all of the time. On a particularly tough day a few weeks ago, Millie and I talked about it, and she agreed with my feelings that although cancer has been the worst thing that has ever happened to our family, it has also been the best. We’ve gone to Disney World with Make-A-Wish, met Justin Bieber, Swoop (the mascot from the U) visits her all the time, and thousands of people have sent her mail/emails. I can’t tell you how many wonderful things have been done for us by friends, family, neighbors, and total strangers.

When I told Millie about your daughter she said ‘Dad, I really wish she didn’t get cancer. Please tell her that even though it’s really bad, a lot of good things happen, so she shouldn’t be too sad.’ Be prepared to be amazed by your daughter’s strength, your own strength, and by how many people love you.”

At the time I got this message I was being bombarded with information. I was completely sensory overloaded and wasn’t able to take to heart what he wrote. Now that I look back at his message I understand with clarity how he felt. I could now write the same letter to someone else with complete honesty and say the exact same things. Children feel and react how their parent’s feel and react. I have observed this with my own children from the time they were born. It continues to be true when dealing with Ashtyn. From the beginning, in my mind, we were not going to shrink while facing cancer. We were not going to lose ourselves. We were not going to soak in sorrow or throw a pity party. No way! I knew Ashtyn was capable. I knew God was fully aware and had a plan for her. As Elder Bednar put it, “Many of the lessons we are to learn in mortality can only be received through the things we experience and sometimes suffer. And God expects and trusts us to face temporary mortal adversity with His help so we can learn what we need to learn and ultimately become what we are to become in eternity.” We were to be strong, confident, and optimistic. Faith and a positive attitude has been empowering.

Today when I read, “she agreed with my feelings that although cancer has been the worst thing that has ever happened to our family, it has also been the best,” I knew Brady was being sincere. In the short time Ashtyn has had cancer, it has been the worst thing that has ever happened to our family, however it has also brought the greatest blessings. We have experienced wonderful things done by friends, family, neighbors, and total strangers. We have experienced feelings of the Spirit, angels, and God being very near. Ashtyn has already experienced what Millie has observed in her own life. “Please tell her that even though it’s really bad, a lot of good things happen.”

It is difficult for some to understand how Ashtyn and I can find joy in this experience. Others have been shocked that we don’t feel anger. There are those that wonder why we aren’t being more “real” with feeling sorrow and doubt. The reality is, our hearts are full of peace and comfort. Our positive vision for the future fills our minds. Our knowledge of God’s presence in our lives fills our souls.

Ashtyn_CopingThe last several days have gone by pretty smoothly for Ashtyn. Her days have been spent eating, sleeping, watching TV, doing physical therapy, and talking to staff and visitors. Physically she has felt well though her body is weak and tires easily. Emotionally she is doing well though she wants to go home and is not even able to leave her room. I know each day can change in an instant. Today she woke up at 9:30 am, the earliest since being in the hospital. She was awake and alert all day feeling good. By 9 pm she started to not feel well. She was nauseated and felt bloated. She informed me, “I just don’t feel right. I am going to rest for a bit.” With that said, she put on the “LDS Hymns” station on Pandora and closed her eyes. As I watched her I sensed how crummy she felt. I was so proud of her ability to cope without complaining as she focused on the words of the music. With her eyes closed, her lips moved along to the words of the song, “Jesus Once of Humble Birth.” Her fingers played along to the piano of “Kiss the Rain” by Yiruma.

The words of Brady ring true and bring a tremendous amount of joy and gratitude. “Be prepared to be amazed by your daughter’s strength, your own strength, and by how many people love you.”

Bootcamp

By | Daily Life, Uncategorized | 7 Comments

I am amazed as I look back on the past week.  Saturday and Sunday I asked for anyone who could to fast and pray.  We wanted Ashtyn’s rash to go away, her throat to feel better, and her white blood cell count to go up.  When I woke up Monday morning why was I disappointed that her rash wasn’t gone, her throat wasn’t healed, and her white blood cells weren’t where I wanted them?  That’s silly.  Why would I not think that even with God’s help, her body still needed time to recover?  Of course her body should take its natural course to heal and the healing process absolutely started Monday.

I am so grateful it did take time for the healing process to take place.  On Monday Ashtyn wasn’t ready physically or emotionally to go home.  From Monday through Friday night, Ashtyn’s rash did heal to where she is now comfortable in her skin.  The rash is no longer itchy and “ugly.”  Her skin has returned back to its normal color, other than her lower legs which have almost cleared up.  From Monday through Friday, Ashtyn’s throat went from not being able to swallow a pill to eating burritos, corn flakes, cake, and pickles.  On Monday all her nutrition and medications were being given through her IV.  By Friday night she was ready to be completely off anything IV.  From Monday through Friday, she went from having such a difficult time even walking to the bathroom to not needing assistance when walking in the halls.  Monday through Friday, Ashtyn went from not wanting phone calls with her siblings or visitors at her bedside to enjoying socializing.  Monday through Friday, she went from being solemn to laughing, joking, and smiling.  I have not seen Ashtyn be her true self since she got admitted to the hospital. However the happy Ashtyn is back.  She is sassy, makes jokes, and laughs at herself.  That’s my Ashtyn.  A girl who will walk out the hospital doors and embrace the few weeks she has at home.  And when the time comes, she will be ready to return to the hospital and kick butt again.

Your prayers, fasting, support, and positive vibes during the past week have brought an incredible change in Ashtyn’s physical, emotional, and spiritual health.  Blog posts from the past week included lessons we learned about faith and patience.  I wrote about her emotional and social progress.  Ashtyn also wrote a post sharing personal feelings about her experience this month and her testimony of God.  It really was a week of miracles.  A week I know will give us lasting strength and perspective.

Looking back during our stay at the hospital, I am so grateful for how her first course of chemo went.  That sounds odd.  How can I be grateful that she had the worst side effects from chemo, the worst case of mucositis, the worst effects from medications, the worst body rash, an ICU visit, more platelet and red blood cell transfusions than I kept up with, and the slowest recovery?  Well, next time we will all be better prepared for the challenges that will come.  In 37 days Ashtyn faced severe physical pain from all her body went through, emotional pain accepting the reality of cancer, and spiritual pain feeling angry at God and learning He will never abandon her.  She truly is so much stronger today than when she first walked into the hospital.  After this month, I have no doubt she can get through anything the future holds for her.

Her white blood cells have not improved to where Ashtyn can go home yet.  We are just holding onto what we have learned so far.  Stay faithful, optimistic, and patient having hope and trust that God has a merciful plan.

Patience will Pay Off

By | Daily Life, Prayers, Trials, Uncategorized | 10 Comments

Saturday and Sunday many people prayed and fasted for Ashtyn.  We prayed for her specific needs that her rash would go away, her throat would feel better, and her total white blood cell count (WBC) and absolute neutraphil count (ANC) would go up.

Sunday night Ashtyn wanted me to sleep in her bed with her.  “It makes me know you are by me and makes me less scared.  I’ve just had too much of this and I’m anxious to get home.”  Because our schedule is backwards right now, we finally fell asleep at 5:30 a.m.  By 8 am the hospital woke up, medical staff started coming into her room to do what they needed to do, and her IV pumps seemed to alarm regularly.  In addition, Ashtyn wanted me to rub her back and arms constantly to help with the itchy rash so she could sleep better.  By 10 am I was exhausted and frustrated.  With irritation I wondered, “after all the prayers and fasting, Ashtyn’s WBC count is still 200?  Her ANC is still zero?  She had a couple of nose bleeds and needs another platelet transfusion?  Her rash still looks awful and it’s now itchy? Her throat still hurts and ‘swallowing a pill feels like swallowing a big piece of steak without chewing it’?  Her legs are weaker when she walks?  There is still no sign of going home?”

How easy it was to have negativity seep in.  After 32 days I was ready for Ashtyn to feel better.  She had been faithful and deserved to go home.  With how tired I was and the situation that was before me, I could see how easy it could be to become bitter at God and lose faith.  Then a scripture came to my mind.

3 Nephi 14:9-11  “What man is there of you, who, if his son ask bread, will give him a stone? or if he ask a fish, will he give him a serpent? If ye then, being evil, know how to give good gifts unto your children, how much more shall your Father who is in heaven give good things to them that ask him?”

I love Ashtyn but God loves her more.  I want Ashtyn happy, but God’s desire for her to be happy is more.  I knew I was exhausted so with that thought I went back to sleep and slept off and on until 3 pm.

When I woke up Monday afternoon I felt much better.  All negative or bitter feelings were gone.  The word that came to my mind was “patience.”  I’ve never realized how much patience is connected to faith.  Be patient.  I can do that.  However Ashtyn was still struggling.  She was more tearful throughout the day than she ever has been.  Tearful for fear of the hospital.  Tearful because of her frustration with her body.  Tearful feeling that it wasn’t fair.  She was so sick of being in the hospital.

Again Monday night we didn’t fall asleep until around 3 am.  Our sleep is never solid but today I woke up for good at 2 pm.  Ashtyn woke up at 4 pm.  I know!!!  Our schedule is so messed up!  But we had a great positive day.  Nothing has changed.  Her WBC’s are still low.  Her ANC is still zero.  Her rash still doesn’t look good.   Her throat and mouth still hurt.  However we feel good.  She told me she is feeling more patient today.  I am not kidding!  Isn’t that amazing?  Yesterday we were both tempted to get angry that our prayers and fasting weren’t answered immediately.  We both were tempted to get bitter at God wondering why He would want her to suffer another day.  We both could have lost faith and given up.  But we didn’t.  Instead we allowed ourselves to be a bit disappointed yesterday but with faith knew God would answer everyone’s fasting and prayers and provide miracles when the time is right.

“Patience is tied very closely to faith in our Heavenly Father.  Actually, when we are unduly impatient, we are suggesting that we know what is best—better than does God. Or, at least, we are asserting that our timetable is better than His.  We can grow in faith only if we are willing to wait patiently for God’s purposes and patterns to unfold in our lives, on His timetable.” Neal A. Maxwell

“Patience is not indifference. Actually, it means caring very much but being willing, nevertheless, to submit to the Lord and to what the scriptures call the “process of time.” Neal A. Maxwell

A few weeks ago Ashtyn’s health was declining and she was almost admitted to the PICU a second time.  We asked for everyone to pray and fast that her health would improve.  After the prayers and fasting, I saw an immediate improvement.  Within a day she went from not talking to talking.  Not opening her eyes to opening her eyes, as I explained in the post, “This Kind Can Come Forth by Nothing, But by Prayer and Fasting.”  This past Sunday, after fasting and prayers, and even with your continual prayers thereafter, Ashtyn has not noticeably improved.  At first frustration was felt.  However, now I am so grateful for the lesson that Ashtyn and I are learning about patience.  I know she will need to use the skill of patience during this entire cancer process.  The first petition for fasting and prayers a few weeks ago brought an immediate miracle.  This second petition I have no doubt will bring another miracle in the timing that is right for Ashtyn.  I am excited that we get to watch as God’s plan unfolds and recognize with awe how merciful He really is in blessing us in His timing, not ours.

“Patience is a willingness, in a sense, to watch the unfolding purposes of God with a sense of wonder and awe, rather than pacing up and down within the cell of our circumstance. Put another way, too much anxious opening of the oven door and the cake falls instead of rising.” Neal A. Maxwell

Ashtyn’s Army, during this cancer battle I know your prayers are heard and will always be answered.  Sometimes the answer will be “yes.”  Sometimes the answer will be “no.”  Other times the answer will be “yes, but not right now.”  Whether the prayers are answered quickly or slowly, it matters not to me.  I know prayers will be answered according to what is best for Ashtyn.

Ashtyn and I are excited for her white blood cells to go up.  We are anxious to get home.  We will continue on with patience, being grateful for the blessings we do have.  I am grateful to be able to spend time with Ashtyn.  I am grateful I get to hold her in my arms.  I am grateful for her returned hugs.  I am grateful to be able to feel the Spirit in her room daily.  She is truly a delight to be with.

Ashtyn:  “I’m grateful that I am a little bit more sleepy and might be able to sleep better tonight.  I am grateful that you don’t have to work and can be here with me.  I am grateful for hats.  I am grateful that Chandler is my bone marrow transplant donor.  I am grateful for my siblings, dad, and extended family.  I am grateful for the time I get to be home.  I am grateful for everyone that is supporting me.  I am grateful for God because he can help me be more positive.”

Patience makes faith stronger.  We now have a new word to add to the way we are going to face this cancer trial.  We will face it with faith, trust, hope, optimism, and now patience.

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

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.”

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

She Chose This

By | Daily Life, Miracle, Spiritual, Trials, Uncategorized | 18 Comments

Ashtyn and I are spending our 25th night in the hospital.  She is no longer being kept awake by nausea, vomiting, coughing, mucous, diarrhea, bloody noses, restroom runs every two hours, shortness of breath with fluid in her lungs, or an extremely swollen mouth.  She isn’t suffering from a high temperature, high heart rate, or high respiratory rate.  For this we are grateful.  For this my heart rejoices.

Tonight Ashtyn was being kept awake because of sadness.  Sorrow that she can’t go home.  Sad for losing her hair.  Worn out from the pain.  I don’t know what it feels like.  I don’t know what it feels like to not be able to leave the hospital.  I don’t know what it feels like to lose my hair.  I don’t know what it feels like to not be able to eat or drink.  I don’t know what it feels like to not be able to get out of bed and walk around on my own.  I don’t know what it feels like to be stuck to an IV pole with medications constantly going into my system.  I don’t know what it feels like to not be able to shower and go to the restroom in privacy.  I don’t know what it feels like to have strangers coming into my room all the time asking, “How are you?” when clearly I am not OK.   I don’t know what it feels like to have visitors come, only to have them leave and know that I can’t leave with them.  I don’t know what it feels like to have constant pain in my mouth and throat, even though I should be happy they are healing.  I don’t know what it feels like to have leg pain and not feel like rejoicing that it’s a sign the bone marrow is starting to make cells.  I don’t know what it feels like to not want to think about life outside the hospital and what I am missing out on.  I don’t know what it feels like to not allow myself to think of what used to make me happy because those things would only make me sad.  I don’t know what it feels like to have no control over anything other than what side of my body I sleep on, what finger the oxygen monitor goes on, and what TV station or music is playing.

Ashtyn Sleeping WIth Picture Of Jesus

Ashtyn Sleeping WIth Picture Of Jesus

Tonight Ashtyn finally fell asleep at 4:30 am listening to Pandora’s LDS Hymns and looking at a picture of Christ loving children.

When I see the physical and emotional pain Ashtyn is going through, I feel sad and have shed tears with and for her.  However, if I had the ability to take this cancer away from her, I wouldn’t. You heard me right.  I would not take this cancer from her.  Why would I rob her of this life changing experience?

Ashtyn chose this before coming to earth.  She knew the pain she would experience.  She also knew the blessings that would be hers from going through it.  Lives would be changed.  Her life would be changed.  Every moment of her trial will be worth it.  She will never want to give back what she gains and what she learns.  It will be precious to her.  So as a mother, why would I ever take that away from her?  I am happy for her that she is the kind of girl that God has trusted to go through this with faith, strength, and dignity.  God has every confidence in her that she will get through this trial.  I do too.