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optimism

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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Getting Ready to Get Out of Here

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

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

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

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

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

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

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

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

Progress

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

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

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

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

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

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

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

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

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

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

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.

Ribbon Tying to Show Support

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Classmates

Ethan

Morgan

AshtynsArmyBanner

Chandler

Alisa-and-Millie

Consider the Blessings

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

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

Ashtyn Walks Down Hall

Ashtyn Walks Down Hall

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

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

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

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

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

Ashtyn’s Army

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

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

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

Who is a part of Ashtyn’s Army?  You.

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

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

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

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

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

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

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

The Routine

By | Daily Life, Inspirational, Looking Up, Trials, Uncategorized | 15 Comments

I suppose Ashtyn and I are getting into a routine, though it is an unpredictable, unplanned routine that we take minute by minute.

Nausea and pain is constantly on our minds.  “Where’s the barf bag?” is a question she commonly asks.  It’s like her security blanket, whether she is going to throw up into it or not.  When Ashtyn does throw up she likes me to put one hand on her forehead and the other hand on her stomach.  Along with her constant companion, the blue barf bag, a box of Kleenex is always by her side for the moments of coughing up mucus or spitting out saliva that is too painful to swallow.  A new addition to her bedside companions is the suction catheter that she uses to suction spit out of her mouth.  Several times a day she asks for water.  After sucking a bit of water through the straw she spits it out and wonders when she will be able to swallow again.  Throughout the day she is asked to swab with mouthwash which is supposed to help her mouth sores.  I also try to keep Chapstick on her lips.  She always does what she is asked to do.  Ashtyn sleeps off and on all day.  She often pulls her nasal cannula out of her nose.  As I put it back into her nose I remind her that she needs the oxygen.  There are the moments in the day that her temperature reaches 104.  Damp cloths are put on her forehead and tummy.  Tylenol always brings her temperature down to around 101 only to then increase again.  Medicine continues to be given every two hours to help with nausea and pain.  I often ask her, “How painful is your throat right now when you don’t talk?”  “How much nausea are you having?”

There is nothing more humbling than giving your 12 year old daughter a bed-bath when she is too sick to help.  There is nothing like watching her brush her hair as clumps fall out.  There is nothing like helping a perfect young woman walk slowly to the bathroom making sure she doesn’t fall.   There is nothing more peaceful than giving her a foot massage with lotion while listening to LDS hymns on Pandora.

Sometimes Ashtyn likes music.  Most of the time she doesn’t   Sometimes she likes to be talked to.  Most of the time she wants silence.  Sometimes she wants her blanket on her.  Other times she does not.  Sometimes she will look at her phone for texts.  Most of the time she doesn’t have it in her.  Sometimes she asks for the TV to be on.  Most of the time she falls asleep before she is able to watch it.

There are moments when Ashtyn doesn’t feel she can do it.  “You are strong. You are beautiful. You are doing so good.  Do you feel angels helping you?  Do you feel the prayers of hundreds of people that are supporting you?”

At 1:00 am she asked, “Will you tell people to keep praying for me?”  “Yes I will Ashtyn.  They have the faith that you will start feeling better. Do you?”  Of course she has the faith that prayers will be answered.  Of course she knows God is near.  A few minutes later she said, “I want to talk to you but I can’t”.  She is in too much pain to talk and it’s really difficult to understand what she is saying when she does try.  “Do you want me to talk to you?  I can read all the comments you have been getting on Facebook and the blog.”  She nodded her head.  I read comments written for her.

“Ashtyn, we have joined your army since Grandma told us this AM. Ashtyn and Suzanne, you and your family will be in our prayers. Do not despair as God is with you every step of the way and will bring you through this. We will add your name to the prayer list in our community. We will follow you through this. We love all of you more than just friends, you are family! Kisses & hugs.”

”I’m a complete stranger, but I’d like to be part of Her Army. Ashtyn is incredibly strong and is such a great example of faith. :).  I am asking your permission to think, pray and fast for Ashtyn…for her continued faith and strength. I’d also love to put her name on the prayer rolls.
Sleep well, Ashtyn (and mom)”

“Not a second goes by I am not thinking and praying for sweet Ashtyn.  I feel so much love for her and also feel the love God has for her and your family. What an incredible perspective on life and cancer.”

“Ashtyn, you are a beautiful amazing girl that is bringing a community of strength together. I am a so proud of you and your strength. You are in my prayers everyday. I know that you will overcome this and become happier and healthier than ever before. When you have a bad day just know there is an army of people that love you and are here for you. Whatever you need. Big Hug!”

“Ashtyn, you are amazing! I am so inspired by your positive thinking, your kindness during the toughest times, and your strong and determined spirit. You WILL conquer this cancer!”

“Stay strong Ashtyn!!! You can do this!!!”

“We love you Ashtyn! We pray for you every day!!!!!”

“Ashtyn, you are one amazing kid!! I would never have the courage to go through all of that!! No matter what happens, you will always be loved!! You deserve to go to Disneyland!! I wish I could come with you!! I haven’t been there since 2007!! Hang in there!! Hang on to that strength long enough to go to Disneyland!! Love you!!”

“Ashtyn, You have a whole family of cousins in Washington DC that think of you and pray for you throughout the day! Isabelle, your 3rd cousin who is 7, comes home from school wanting to know if you got your pickles and the latest update. Jake, the 4 year old, even puts in a nightly prayer request for you. You are part of our family conversations and prayers daily!”

“Ashtyn, You have been really strong lately. I hope you will never give up and whatever happens to you, I want you to know that my family is praying for you night and day. Ashtyn, knowing you for as long as I have, you are strong and you never give up. I hope I can visit you sometime.  We love you!!!!”

“Ashtyn, you are going to beat it too! I can tell you are so strong and determined and that is going to get you through this. Keep fighting and we’ll keep praying!”

“Hey 🙂 you probably don’t remember me but I was on your brother’s football team.  I was just hoping you’d be alright.  I will try to send you something!  I’m really sorry for what’s been happening lately and I just want you to know I’m here for you and so is your army!!! :)”

“You don’t know me and somehow I feel like I know you. Ashtyn you are in my prayers, thoughts, and heart. You and your family are very strong and can get through anything, you just keep your pretty head up.”

“Ashtyn, you are in our prayers. We are grateful to share this journey with you through this blog and are now proud to be part of your army. You are never alone.”

“Our family is praying lots for you Ashtyn! I know you don’t know us well, but we think of you often, and you are kept in our thoughts and prayers all day long. Your name is in the Oqquirrh Mountain Temple, too!”

“Ashtyn, I was so touched by your words! I am actually a nurse on the unit you are on at Primary’s. We just haven’t met yet… I’m also friends with Nanette. She told me how amazing you are! I can’t wait to meet you! You are an inspiration to so many! :)”

“Ashtyn, We don’t get to see you much but I am glad we got to visit with you and your family at your grandma Susan’s house a month ago. I want you to know that the Jackson family is thinking of you and is following this blog, fasting and praying daily for your quick recovery. Thank you for inspiring us.”

“You are a beautiful, inspiring person and I am lucky to be able to read all about you through this blog. Keep up the strong attitude and you will make it through this! xoxoxo….”

AND ON AND ON AND ON.

Ashtyn fell asleep as I read to her.

Stay Positive

By | Inspirational, Prayers, Trials, Uncategorized | 7 Comments

Saturday night… I mean Sunday morning I went to bed at 6 am, after a busy night helping Ashtyn.  At 7:00 am I woke up to about 10 different medical staff surrounding Ashtyn’s bed moving very quickly.  I could sense there was worry in the air.  As I watched the organized commotion, I gathered that her blood pressure was low and they were doing all they could to get it to stabilize. 60 ml after 60 ml of fluid was pushed into her Broviac central line.  A total of 1080 ml was given to her in a matter of 10-15 minutes.  Her original blood pressure was 103/20.  The lower number (diastolic) of 20 was very concerning.  A normal diastolic pressure is around 65.  At 20, Ashtyn was unable to perfuse oxygen to her brain.  I could feel panic surfacing.  Is Ashtyn going to be OK?   Is she going to make it?  I quickly felt calm remembering what I know to be true.  God is in charge, He is watching out for her, He has a plan, and with everyone’s faith and prayers she will be OK.

By 7:30 am we placed a mask over Ashtyn’s mouth and wheeled her bed to the Pediatric ICU and placed it in a room with closed doors and no windows.  She was given norepinephrine to keep her blood pressure normal.  “Mom, I want to go back to the other room.”  Me too.  I asked the doctors what their best case scenario was of getting her back to her room.  They wanted to observe her for at least 24 hours.  Like Ashtyn, I had an immediate appreciation for her hospital room with my comfy couch bed, instead of a chair,  and all of Ashtyn’s Army decorations.  I sent a Facebook message to Ashtyn’s Army “Ashtyn’s blood pressure dropped this morning.  She was moved to the pediatric ICU for monitoring.  Please pray that the medical staff will figure out the cause.  Pray that she can recover quickly so we can return to her home away from home hospital room.”

The doctors’ and the nurse practitioner approach was that she had an infection until proven otherwise.  My approach was that she had too much morphine in her body until proven otherwise.  As I sat beside her I was so grateful for God’s hand in Ashtyn’s daily life.  At the time her low blood pressure was detected, she was getting her second unit of red blood cells transfused.  During the beginning of a transfusion blood pressure is taken every 15 minutes.  Other than a blood transfusion nurses generally take her blood pressure every 4 hours.  The PICU took blood tests and decided she didn’t need that second unit of blood.  I am grateful that her blood pressure dropped at a time that she was being monitored very closely.  Because of that blessing, I know her blood pressure wasn’t low for long and her brain was not compromised.

As the hours of monitoring went on it became apparent that she was overdosed with sedatives and pain meds. Not overdosed because of the medical staff, but overdosed because her body was unusually sensitive to what normally is given.  By 4 pm Ashtyn was stable enough to go back to her room.  Another miracle because of the prayers of Ashtyn’s Army.

Ashtyn’s day continued to be a struggle.  Since she was overdosed with medication, the staff  did not give her any medicine for nausea or pain for 12 hours to help her not be so out of it.  Because of that, she became very nauseated and threw up often, though there was nothing to throw up.  The antibiotics were also affecting her to where so had to go to the restroom a lot.  She was uncomfortable, restless, and unable to sleep well.

Her hair was a matted mess.  I asked Ashtyn if I could brush her hair.  She wanted to do it herself.  As she brushed her hair my heart sank in despair and anger for what she is going through.  Why is it that I can watch her sick and in pain, but when I see clumps of hair coming off her head, it hurts me deeply?  It makes me sick to my stomach.  She has lost so much hair, I suspect it won’t be but a few more days before it will all be gone.  I wanted to validate any feelings she may have about her hair loss.  “Ashtyn, do you know what makes me mad?  That you have to lose your hair.  It’s very sad.  Does it make you mad?”  She nodded her head, but then shook it, “I can’t think like that.”  Her comment pierced me.  She was telling me what I have been teaching her for years.  Be positive.  There is no point in ever stewing over something you have no control over.  It is so much more productive if we push out the negative and focus on the good.

Tonight Ashtyn asked me how long she gets to be home when she leaves the hospital.  I haven’t had the chance to tell her that when she goes home it won’t be for good.  She figured it out.  The girl definitely listens to conversations around her bed.  I told her she would be home for about 1 ½ weeks and in that time we can do whatever she wants to do.  “Do you want to go home or go to Disneyland.”  She thought about it, “Disneyland.”  I asked, “How long do you want to be there?”  Her reply, “As long as possible.”  I gave her the idea of going to Disneyland for 5 days and home for 5 days.  She thought that was the perfect idea.  “Do you want to go to Disneyland first or home first?”  After careful consideration she said, “I want to go to Disneyland first so that there is no way they’ll make me come back to the hospital.”  I understood.  She would have a fear the first couple of days of being home that the doctors would make her go back to the hospital early for one reason or another.  Ashtyn has always been very intuitive of knowing how to cope emotionally.

Ashtyn has been handling her hardship with such dignity and grace.  She remains nice to me and the staff even in her toughest moments.  Her determination never seems to fail.  I told her tonight, “Ashtyn, tomorrow will be a better day.”  “Mom, you told me that yesterday.”  “Well Ash, I think it will be.  Do you?”  She nodded her head.

Ashtyn Going To PICU

Ashtyn Going To PICU