Category

Inspirational

Faith

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

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

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

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

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

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

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

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

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

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

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

Faith just makes life easier and more joyful.

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

Ribbon Tying to Show Support

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Classmates

Ethan

Morgan

AshtynsArmyBanner

Chandler

Alisa-and-Millie

Getting Back to “Normal”

By | Daily Life, Inspirational, Looking Up, Trials, Triumphs, Uncategorized | 6 Comments

The doctors came to Ashtyn’s room this morning, as they always do, to discuss the plan of the day.  What are the concerns?  How is her status?  What changes need to be made? Everyone was pleased with how well she is doing and noticed her huge improvement.  No changes were made.  Stay the course.

For eleven days the oncologists have cultured all possible blood, urine, stool, nasal, throat, and anything else they could test to determine why she got so sick.  The infectious disease department was involved to make sure she was being covered by every antibiotic, anti viral, and anti fungal medication possible.  Surgery attendings were involved monitoring her appendix.  ENT was included to rule out fungus in her sinuses.  Integrated medicine was there to provide pressure point and massage therapy.  She had physical and occupational therapy working on strength.  Dermatology took a look at her scalp for a questionable mole and will be looking at the rash she has all over her torso tomorrow.  I wish I could write a list of all the viral, bacterial, or fungal infections they have tested for.  I don’t have the list and most of them are words I’m not familiar with anyway.  Every single test has come back negative for any sign of infection. Remarkable. But not surprising.

February 13th I posted “Nowhere I’d Rather Be.”  It was the night before the doctors started doing blood work to test for infections.  In the post I wrote: The Stake President gave her a blessing.  The blessing started out sounding generic to what she was in need of… Soon though the blessing didn’t seem generic to me anymore.  His voice changed and with power he said,  “I command these infections and illnesses to leave your body.”…Of course she still has cancer.  That wasn’t what he commanded to leave.  I believe she did have an infection of some sort, and whatever infection she had was healed using the power of God.”

That blessing has come to be a tremendous help for Ashtyn.  Her body has had such a severe reaction to the chemo.  Even her healthcare team commented that her body was hit abnormally hard.  What a blessing it has been to be infection free, so her body could conserve energy to handle the effects of chemo without having to fight and deal with a bacterial, viral, or fungal infection. “In a priesthood blessing a servant of the Lord exercises the priesthood, as moved upon by the Holy Ghost, to call upon the powers of heaven for the benefit of the person being blessed.” Dallin H. Oaks

Today was a great day, by my standards.  Ashtyn is on the road to getting back to “normal.”  For over a week all she did was lay in a quiet, dark room and keep everyone busy with all that she was going through.  Today she was awake and alert for a few hours at a time.  Her naps were calm and restful.  By the end of the day her temperatures ranged from 98.7 to 100.5.  Her nausea was gone which meant there was no throwing up.  We played two games of UNO with occupational therapy while we listened to music.  She was able to talk a lot more and I was able to understand what she was saying.  When walking to the restroom and back she no longer was shaky and unsteady on her feet.  Ashtyn had energy to be a little irritated.  She doesn’t like that her mouth and throat hurt.  All she wants to do is be able to swallow her spit and a cup of cold water without excruciating pain.  Ashtyn voiced her opinions today when things weren’t where she thought they should be or when she wanted something.  When told to do things she didn’t want to do, she resisted  more.  Her irritation is a good sign to me. The outward fight is in her.  Today she didn’t do anything abnormal.  She did make me scared one time.  When getting a red blood cell transfusion, her heart rate went down to around 70.  A normal heart rate is generally 60-100 for a child her age.  Her heart rate had been high for days so when it dropped to normal I got nervous.  Her heart rate dropping to 70 just meant that her heart wasn’t having to work as hard as previously.  One thing has remained the same.  Ashtyn wants to go home.  She is on the road to getting there and I am so proud of her.

It’s very inspiring watching Ashtyn overcome hurdles.  I know she will be faced with one after another.  Rest will always follow, whether for a short moment or an extended period of time.  We will then be faced with another hurdle to learn from.  One thing we will always keep in mind, “Truly, things always work out!  Despite how difficult circumstances may look at the moment, those who have faith and move forward with a happy spirit will find that things always work out.” Gordon B. Hinckley

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

Life Is Good

By | Daily Life, Inspirational, Looking Up, Spiritual, Uncategorized | 10 Comments

Wednesday night was awful.  Ashtyn went to bed around midnight.  I turned the lights off close to 2:30 am, and at 4:30 am Ashtyn woke up and the only thing she could whisper was, “Mom, lay with me.” Sometimes she likes me to lay in her bed and other times she doesn’t   I asked her, as I often do, how much pain she was in on a scale of 1-10, 1 being no pain, 10 being the worst pain imaginable.  She softly said, “10”.  Ashtyn didn’t speak the rest of the night.  I am so grateful she knew what to say that gave me the insight into what she needed.  She needed me to lay in bed and help get her pain under control.  Throughout the night she had a low dose of morphine continuously going through her central line.  In addition to that dose she was allowed to press a button every 10 minutes that gave her extra amounts of morphine.  Ideally she is suppose to push the button on her own when she feels her pain getting worse.  Last night her pain was so intense she couldn’t even push the morphine button.  From 4:30 am until 9:30 am I laid beside her pushing her morphine button every 10 minutes.  I don’t think her pain level ever got below an “8” but at least pushing the button helped.  By 10 am the doctors came to her room and finally increased her maintenance morphine from 0.3 mg/hour to 1.0 mg/hour.  They also increased the amount of morphine from 0.5 mg to 1.0 mg every time she pushes the button.  On top of that they gave her an extra 4 mg dose initially just to get her pain under control.  With peace knowing she was feeling better, I fell asleep and slept until 1 pm.  Ashtyn slept until 3:30 pm.

When I woke up I felt emotionless, burnt out, and numb.  I felt nothing.  I was just existing in a small room by myself with nothing to feel.  A nurse informed me that while I was sleeping a friend had brought her therapy dog to see Ashtyn and another friend had stopped by to say hi.  Miraculously messages and texts started coming from Ashtyn’s Army.  My cousin and his wife from the DC area sent me an email voucher for a 2 hour house cleaning service.  My sister Alisa called to tell me she was going to stop by soon and bring me lunch.  Ashtyn received a bag of gifts from Jason’s work.  Jeni dropped by a box of valentines from Ashtyn’s elementary school.  Two separate youth church leaders brought Valentine’s cards.  Messages of encouragement continued to come from the blog and Facebook.

Are you kidding me?  Have we forgotten how good this world is?  Have we been fooled to think there is no compassion and love left?  Has the negativity of our times clouded our eyes making it difficult to see all the positives?  Does bad seem to dominate good?  I don’t believe for one second that the power of good isn’t running rampant around the world.

With Ashtyn’s Army, how could I not immediately feel full?  How could Ashtyn not completely feel loved?  The power of Ashtyn’s Army is strong.  Some day soon I will write a post on the miracles Ashtyn’s Army has brought into my family’s and Ashtyn’s life.  It’s incredible.

I am so proud of Ashtyn today.  She struggled with such pain from mucositis and never cowered away.  In all her misery she allowed me to help her with a shower.  Even though she threw up in a blue plastic bag while in the shower, she pressed forward.  Ashtyn brushed her hair and teeth and did her oral care with mouth wash.  She forced herself to swallow two pills morning and night that aren’t available in IV form.  Can you imagine swallowing anything let alone pills with a completely raw throat?  Under the direction of the nurse, Ashtyn let me do her sterile dressing change for her central line and she even helped me take off the sticky tape of her old dressing.

Today her temperature ranged from 101.6 to 104.4 degrees.  In the last couple of days the nurses have drawn blood to test if Ashtyn has an infection.  I am not surprised that her blood cultures have not grown any bacteria.  For now the thought is her temperature is a natural response to the chemo and mucositis.  Referring back to my post “Nowhere I’d Rather Be” I shared,  “ I believe she did have an infection of some sort, and whatever infection she had was healed using the power of God.”  I still believe had she not received a blessing from her Stake President on Tuesday night, her blood cultures would have come back positive for an infection.  But for now, she is well.

At 5 pm I was feeling good.  Jason had come up after work to be with Ashtyn and the love and support from Ashtyn’s Army surrounded us.  The doctor came into the room with a smile on her face and said, “I have news about the lab work.  Chandler has been matched and is able to be the bone marrow transplant donor for Ashtyn.”  What an amazing moment that was for us.  I immediately called Chandler.  He reacted like a boy receiving an Xbox for Christmas.  God is so kind.  Referring to my post “I Could Not Have Planned It Better Myself” I wrote,  “From the moment I felt a bone marrow transplant was likely, I have always thought it would be Chandler who would be the donor.”  In that same post I wrote of the dream Ashtyn’s 10 year old sister Morgan had, “…They compared my tube with Ashtyn’s.  It was not a match.  They compared Ethan’s tube with Ashtyn’s.  It was not a match.  Then they compared yours (Chandler) with Ashtyn’s and it was a match.”

There are many different explanations that can be said about our previous feelings and comments.  It can be said to be a coincidence, a lucky guess, or intuition. To me it doesn’t really matter what others call it.  For me I call it revelation.  “Revelation is communication from God to His children.  This guidance comes through various channels according to the needs and circumstances of individuals and families.  According to our faithfulness, we can receive revelation to help us with our specific personal needs, responsibilities, and questions.”  Morgan had a dream.  I had a quiet spiritual prompting.  Cool!!!

I started the day feeling empty with no emotions and ended the day full of joy.  I love my life.  Yep. I LOVE MY LIFE.  Even living in the hospital, watching my daughter suffer in pain, not knowing what each day will bring other than a lack of sleep and constant medical procedures.  I am away from Chandler, Morgan, and Ethan whom I adore.  I no longer live the life of carpooling, gym, tending my nieces, friends, family time, and being at home.  I am grateful for the life that God has handed to me.  We have a Heavenly Father who cares and has a plan for us. We have a Savior who understands completely and lightens our burdens.  I have four remarkable, special children.  I have friends, family, and Ashtyn’s Army that are raising me up everyday.  Life is good.

I Need Thee Every Hour

By | Inspirational, Prayers, Spiritual, Uncategorized | 26 Comments

There are no words that can explain the spirit those men brought to Ashtyn’s room. There is no way I can explain the power that was there. I believe Vocal Point came to the hospital today for Ashtyn. They might have lifted other children and families as well, but they were sent for Ashtyn. I am so grateful I pushed through the thought of “I’m too tired to go to church” and went. It was a blessing that I knew Cheri and that she encouraged them to go to Ashtyn’s room at the time they did. I’m grateful that no medical staff stopped 12+ people as they walked through the locked doors and past several nurse’s stations to Ashtyn’s room. I feel watched over that Ashtyn had a nurse who was compassionate enough to recognize the benefits outweighed the risk of having so many at her bedside.

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In Her Own Words

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

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

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

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

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

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

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

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

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

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

I Could Not Have Planned It Better Myself

By | Daily Life, Inspirational, Looking Up, Uncategorized | 6 Comments

From the moment I felt a bone marrow transplant was likely, I have always thought it would be Chandler who would be the donor. Chandler sometimes has an intense personality that pushes Ashtyn’s buttons. Ashtyn has a completely different dramatic personality at times that pushes Chandler’s buttons. There are moments when love is felt for one another but the majority of the time they drive each other crazy. I know that if any of my kids need to connect, it is Ashtyn and Chandler. They are 19 months apart and are now learning that their bond is much stronger than they thought.

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Fortifying and Gathering Reinforcements

By | Daily Life, Inspirational, Trials, Triumphs, Uncategorized | 7 Comments
We Can Do Hard THings

These cancer bugs with X’s over them are from Ashtyn’s Grandma Poulsen. They are hung in front of Ashtyn’s bed to remind her that she can do hard things and destroy her cancer.

OK Ashtyn’s Army, we are all fortifying our battlefields and preparing for war!  I can feel it! Ashtyn’s Army is increasing in number, strengthening in faith, and rallying in service.  Comments are being heard, prayers are being offered, hearts are being touched, love is being poured out, visits are adding strength, efforts are gathering, children are being taught, adults are growing, friends and family are uniting, and together we are going to kick this cancer’s butt!

Ashtyn’s Army is doing all they can to strengthen her by utilizing their own strengths.  All efforts are empowering and uplifting.

Ashtyn will continue to have visitors come daily to help strengthen her.  One visitor will help guide Ashtyn to her happy place to find peace and hope.  Another will provide music therapy to sing out anger and joy.  Others will come for girl talk.  She will have those who will massage her and provide essential oils.  Pictures will be taken of milestones, dark times, and triumphs.  There will be times for the calm spirited visitors to sit beside her, providing comfort and not requiring anything from her.  Other times she will have visitors that bring laughter.  Words of encouragement and purpose will come.  There are those who will bring in food that she can tolerate.  Already there has been tranquil music, inspiring talks, funny stories, letters written, and uplifting gifts brought.  She’ll continue to read comments and see support on Facebook and her website.  Purpose has been given to Ashtyn knowing that this trial is not a waste of time.  She will know that her pain, struggles, and sacrifice will not be in vain because of the stories being shared of lives already being changed.

Family Army

Laughing with Kristi and Natalie
Family Army

Opening Letters From School - Friend and Community Army

Opening Letters From School
Friend and Community Army

Nurse Entertaining Ashtyn

Nurse Entertaining Ashtyn
Medical Army

Ashtyn is doing her part in preparing and fortifying too.  She is putting on her armor of strength, determination, independence, confidence, perspective, acceptance, and is starting to take charge.  She is being raised up by your prayers and is getting ready to rock this thing.

HER DETERMINATION:  For 12 hours today she forced herself to eat. Every bite was a bite she didn’t want to take, but she did it.  No way was she going to let some stupid NG tube win.  Every day she will tolerate different food.  A great deal of effort was made to provide her with food she could handle.  After much trial and error, this is what she ate today:  cheesecake for breakfast, a cup of homemade creamy potato soup from my friend Angie, a few bites of Ice Cream, one Trader Joe’s yogurt, 32 ounces of rootbeer, a bowl of Top Ramen, one entire cup of noodle soup, a small Red Mango, and ½ can of Sprite.  She did not throw up once! I am guessing close to 1500  calories again.  Way to go Ashtyn!!!!

HER INDEPENDENCE:  She doesn’t get nervous when I leave the room.  When an aide came to weigh her today she made sure to remind me that she needed to wear the mask to go in the hall.  Ashtyn informed me when she needed to brush her teeth. (The appearance of her tongue is changing however no mucositis yet.  Keep praying that she won’t have to deal with the pain that mucositis causes.)  Though there was no desire for a shower tonight, Ashtyn pushed through her fatigue and showered because she knew that showering every other night is important.  She makes sure that the food she eats is correctly written on the dry erase board.  She does her own eye drops and walks with her awkward IV pole on her own to the restroom.

HER CONFIDENCE:  Ashtyn is now able to talk about the future of when she loses her hair without crying.  She is going to pray and ask, since she’ll suffer the loss of her hair, if He would bless her that her hair will grow back straight instead of curly.  Ashtyn has accepted as best she can that she does have cancer.  She now can hear the words “cancer” and “chemotherapy” without falling into a depression.

HER PERSPECTIVE:  Contemplating cancer and the support she has received she said “At the end of this, I will know how many people care.  If I hear that someone else has cancer, I’ll know how they feel and can help them.  I don’t want to work here because I don’t want to see kids in pain, but I’ll volunteer.”

HER ACCEPTANCE:  Last night she asked, “Am I going to be here for a month?”   I paused and admitted, “Yes you will be.”  The tears came, but only for a brief moment as I explained why she has to stay.  “The doctors are trying to get you home for good as soon as possible.  They figured out the best way to accomplish that goal is to put you on different chemotherapy drugs that I can’t give you at home.  You’ll get the chemo for 10 days.  After 10 days you will be done with the chemo but will have to stay in the hospital 20 more days just to make sure you don’t get sick.  You won’t have any ability to fight infection so you’ll need to stay in your clean hospital room to stay safe.”  Miraculously she was quite calm and accepted it.  I remember only a few days ago how distressed she was at the thought of staying for more than a few days.

After only eight days of being in the hospital, Ashtyn has become noticeably stronger mentally and emotionally, preparing for when she becomes physically weaker.  She has done remarkably well during her first four days of chemotherapy, giving her time to build determination and confidence in herself that she can fight this. Only because of your prayers and support could she have done so well. Thank you.

We Can Do Hard Things

My friend Lisa made one of these posters for Ashtyn and one for my other kids

“I can do all things through Christ which strengtheneth me.”  Philipians 4:13