Are We Really Strangers

Since Ashtyn was diagnosed with cancer at the end of January, we have received many messages on the website and Facebook  Many times we have heard phrases such as, “I don’t know you.” “We have never met.” “I just came across your blog.” “You don’t remember me Ashtyn, but I knew you when you were young.” “Although I haven’t seen you in years Suzanne, I want you to know I am thinking and praying for you and your family.” “I can’t stop thinking about you and Ashtyn.”

“Ashtyn, we haven’t met, but I found your Facebook page by chance. I have read about you and your family, and shared your story with my family.” Angela

“Ashtyn, you don’t know me, but a few days ago I came upon your story. I read some of the entries, cried, read some more and cried more. Ever since then I haven’t been able to get you off my mind.” Stormy

“After seeing your daughter’s name I had to read her story. (I have an Ashtyn too.) Add us to the list of your growing army. Sending more love and prayers your way.” Brooke

“You don’t know me, but I love and care deeply for you and your family. God Bless you, angel girl.” Gigi

“Even though I haven’t met her and don’t anticipate that I ever will, I have felt such love and compassion and sincere prayer for her. It’s been a blessing for me. I have experienced deeper spiritual joy and awareness. Hang in there, Ashtyn! You are amazing!” Brenda

“I have been reading your story everyday for the past month. I think it is about time I wrote a comment. We have never met and I don’t think we ever will. But I’m praying for you! Get well soon Ashtyn!” J.J.

“So many of your brothers and sisters that you’ve not yet met on this earth are rooting for you.” Swann

“Ashtyn, though we are strangers, I want you to know how happy I am for you! You keep being YOU! You are strong. You can do this! Enjoy your time at home sweet girl.” Tara

But are we really strangers? No one in Ashtyn’s Army knows all the members, but I just don’t believe any of us are strangers. At least to me it doesn’t feel like we are. We all have similar feelings of love for this young girl. We all have been inspired and uplifted in some way. We all feel heavy in our hearts when she struggles and overjoyed in her triumphs. We all want the best for her. If you have read all the blog posts from the time Ashtyn was diagnosed with cancer, you know as much as I know. You don’t know any less than I do and are walking beside us every step of the way. Many people feel they know Ashtyn though they have never met her. We too feel a connection to you. When I receive a message from a “stranger” I don’t feel it is from a stranger at all. I feel it is from a friend who cares for and loves my daughter. How can I not love you back?

I have wondered on several occasions why Ashtyn has touched so many hearts. I don’t know for sure but one thing I do know, it’s not me. I can write a blog all day but no one will care unless their hearts are touched. I believe the Spirit is touching hearts because of Ashtyn’s spirit. She needs you and maybe you can benefit from her as well. It really is remarkable and such an amazing feeling to have a literal connection to hundreds of people. You are not strangers to me.

So you know what we should do? Once Ashtyn has triumphed over cancer and the war is over, we need to have a party. We need to gather together, meet face to face, and celebrate what Ashtyn has accomplished through the help and prayers of her Army. It will only be fitting to celebrate a war that has been won with the Army that got us there. We will gather as non-strangers and Ashtyn will be able to see with her own eyes the hundreds of people that rallied around her. She will be able to see those that lifted her up for months and gave her the strength and power to accomplish what she wouldn’t have been able to do alone. A victorious party is what we will look forward to.

Now for the update: Ashtyn and I continue to not be able to sleep at night and are exhausted during the day. It is unfortunate because we are not awake when everyone else is. I was tired during the day and hardly effective around my house. Ashtyn slept the entire time her siblings were at school, however she was awake the rest of the evening. Even though it would be ideal to be on the same day schedule as everyone else, Ashtyn and I do enjoy the peacefulness of the night. I am sure that is the reason we got into this predicament in the first place. The hospital is very quiet and peaceful at night. Ashtyn preferred sleeping through the chaos of the day and enjoyed the nights when she would not be bombarded by people. Tomorrow we have to wake up and go to the hospital for a bone marrow aspirate and biopsy at noon, so hopefully we will start our transition to being on a day schedule.

Ashtyn seems to have a lot of cravings for different kinds of food. She always craves pickles and salt and vinegar chips. Other cravings that are on the list include a grilled cheese and peanut butter sandwich with a pickle from Melty Way. She has asked for a Nutella crape cupcake from The Sweet Toothfairy. Before going back to the hospital she really wants to go to Olive Garden and Bonsai Japanese steak house, where they cook all the food in front of you. Tomorrow she is already looking forward to having a vegetarian subway sandwich with a bag of salt and vinegar chips. I am so grateful she has an appetite and cravings. She is too. Getting a lot of nutrition will help her during the next round of chemo.

FROM ASHTYN: “Today I was thinking about Disneyland and had a feeling I will be able to go. I thought about eating the big pickles and hard scooped ice cream you get on Main Street. I thought about going on rides like Space Mountain, Splash Mountain, Thunder Mountain, and Matterhorn. I pictured going to the Golden Horseshoe comedy show with the chili bread bowl. We will go to Cars Land and get another pickle that they sell at the entrance. I won’t be able to go on the Grizzly River Run because it would get my broviac line wet or Screamin because the seatbelt will hurt where the line is. That’s OK  I pictured walking early morning to Disneyland and going through the entrance. It would be so cool. I really need to have an absolute neutrophil count of 1000 to go to Disneyland. Yesterday I was still at zero. All I really want right now is to go before I return to the hospital. That is my main goal. Please pray that I will be able to get my white blood cells up. I really hope it will go up within a week and a half. I am worried because I think I will have to go back to the hospital in about 2 1/2 weeks.

How We Got Home

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

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

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

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

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

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

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

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

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

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

Bootcamp

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.

Getting Ready to Get Out of Here

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

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

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

I 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.