Category

Trials

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

On The Bright Side

By | Daily Life, Trials, Uncategorized | 19 Comments

2/17/13   MIDNIGHT

I’m not going to lie to you or sugarcoat it.  I am a “tell it how it is” person.  Ashtyn’s physical body has had a rough couple of days.  Chemotherapy wipes out cancer cells, but in doing so it wipes out other cells as well.  (Her red blood cells that carry oxygen from her lungs to the tissues, platelet cells that prevent bleeding, and white blood cells that fight infection.)  In addition, chemo also kills fast growing cells.  Hair follicles, skin, and the cells that line the gastrointestinal tract are some of the fastest growing cells in the body. God gave us those cells for a reason and you can probably imagine what the body does without them.

Ashtyn’s mouth is completely full of open sores that go down her throat through her gastrointestinal tract.  She is being given a high dose of Morphine to help keep the pain under control.  It is very painful for Ashtyn to speak, so she rarely talks.  When she does talk, her voice is weak and high pitched.  She often has to cough up mucus and cells from her throat.  It is difficult for her to swallow even saliva so she spits the thick mucus into a Kleenex   With the low platelet count and the sloughing of her upper GI tract, blood accumulates in her stomach. A few times a day she throws up the blood because it is nauseating to her.  Morphine is a blessing for her pain but does have some side effects.  It makes her shaky and unstable when she walks.  Her face and legs itch. She also has to wear a nasal cannula tube in her nose that gives her oxygen because of her shallow breathing from being on morphine.  When she sleeps, morphine makes her have vivid and weird dreams where she sometimes will talk.  Ashtyn appears to sleep a lot throughout the day and night but it is very superficial, off and on sleep.  When people talk in her room or do procedures, though she looks to be asleep, she still listens to what is being said.  For the last several days Ashtyn’s temperature has ranged from 101.5 to 105 degrees depending on when she last got IV Tylenol   I have tried wet cloths on her forehead and stomach.  Ice packs have been placed under her armpits and legs.  Nothing seems to get her temperature down other than the Tylenol   Because of her fevers she continues getting blood cultures done to see if there are any infections.  She has also been checked for respiratory viruses.  Each test continues to come back negative for any infection and her temperature is still thought to be a body response to the effects of chemo.  Ashtyn has had several nosebleeds because of her low platelets.  They continue giving her a long list of antibiotics, antivirals, anti nausea medications, and who knows what else.  She also gets platelets and red blood cell transfusions.  Ashtyn keeps her nurses and me busy.

2:45 a.m.

When I wrote that Ashtyn keeps her nurses and me busy, I was not kidding.  After writing the above paragraph Ashtyn’s oxygen saturations began to drop.  Because she is on oxygen she has a sensor on her finger and a monitor that shows how well she is oxygenating.  Ideally she should stay above 90.  Her alarm rang and she was already down to 30 when I got to her.  Loudly I said, “Ashtyn, take deep breaths” as the nurse cranked up her oxygen.  Her saturations did come back up to 90.  I sat beside her in bed, “Ashtyn, take deep breaths through your nose.” The number would go back up and then would soon fall again.  “Come on Ash, take 5 deep breaths.”  Again the number on the monitor would go back up to above 90 and then fall again.  “You need to clear your throat and breathe” I would say in a loud, authoritative voice.  She did exactly what I asked her to do.  And once she did what she was told, she would fall back asleep and stop breathing.  “ASHTYN, wake up!  I don’t want you falling asleep.  You need to take deeper breaths.”  “Mom, are you scared?” she asked so sweetly.  Reassuring her I said, “No I’m not scared but I want you to breathe better.”  Not even able to open her eyes for more than a second she calmly said, “It’s nap time.  I want to go to bed.”  I instructed, “When it is time to go to sleep I will let you but you can’t go to sleep yet.”  This went on for about 20-30 minutes as the nurses were observing, getting a back up oxygen source, and paging the doctor.  “I’d just get the doctor up here quick and decrease her morphine.”  The morphine was stopped.  The doctor got to the bedside and watched as Ashtyn would breathe only when I would remind her to and would then instantly fall asleep and stop breathing.  She had oxygen going in her nose and a mask in front of her face.  The doctor ordered a chest x-ray to see if she had fluid in her lungs.  They tested Ashtyn’s blood to see if it had enough oxygen in it.  I asked the doctor, “could it just be that she is getting too much morphine?”  Not having ever met Ashtyn he wanted to make sure nothing else was going on.  The blood test and chest x-ray came back looking good.  To confirm that her symptoms were due to an overdose of morphine they gave her Narcan, a medication that reverses the actions of morphine.  The Narcan worked immediately.  Her mood changed and she became irritable.  She was nauseated and threw up.  However, Ashtyn was breathing better and was more awake.  She asked, “Mom, what happened today?”  I replied with my own question, “Do you remember Jared coming tonight to play the guitar for you?”  (Which was the same time she had a nosebleed and was spitting up blood and thick bloody mucous while we tried holding oxygen over her mouth).  Completely unaware she said, “No I don’t remember.”  With a reassuring voice I said, “Ashtyn, not much happened today.  You just slept a lot.”

ON THE BRIGHT SIDE:

Ashtyn is coping with amazing peace, calmness, comfort, and strength.  She is optimistic and thinking positively.  I can prove it!!!  After throwing up yesterday she immediately asked for a Frazil,  and not just any Frazil but two large Frazil’s, one tigers blood and one berry.  I knew she didn’t need a large one but her optimistic mind thought otherwise. Sure she was only able to have a few sips but her vision was to drink a large one.  I like her style.  With a mouth full of sores she asked for pickles and Salt and Vinegar chips.  The party pooper that I am brought up the fact, “I don’t know if Salt and Vinegar chips would be good for your mouth Ash.”  Without hesitation she said, “I want them for when my mouth feels better.”  She now has a big bag of Salt and Vinegar chips by her bedside.  Yesterday she asked if she could eat her pickles, “I want four… I mean 6 pickles.”  She took one bite and said, “The vinegar doesn’t really feel good in my mouth.”  Hey, it was worth a try.

She is a fighter.  She has a couple pills that have to be swallowed everyday.  I noticed that if she takes them with a stomach that has blood in it, she will just throw them up.  So now after she throws up I ask her if it’s ok if she takes her pills.  She always agrees even though “it feels like razors going down my throat.”

Ashtyn has a remarkable peace about her.  She is not in misery or suffering greatly.  Instead, she feels the pain but not more than she can tolerate.  She is experiencing the hardship but Christ is lightening the load.  I know this to be true because I see the peace in her face.  I sense the calmness in her countenance.

During the last 2 days Ashtyn’s body has greatly struggled but her spirit has not.  I’ve asked her if angels are helping her.  She knows they are.  With the most humble and sure voice Ashtyn has told me about her Great Grandma Holt who just passed away in November from lung cancer.  I don’t feel my grandma near but Ashtyn does.  Ashtyn and I have had a few short conversations in the last 2 days about Grandma’s visits.  Ashtyn isn’t able to talk much and when she does it is in short, quiet sentences but this is a summary of what she has told me:  “Yesterday Grandma Holt talked to me a lot.  But not very much today.  I just know that it’s her.  She talks in my ear.  She told me that everything is going to be OK   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.”

No matter what Ashtyn is going through I know she is being lifted by Ashtyn’s Army and the Army of Angels.  I know she will not be given more than she can handle.  I know that after every tear she sheds, every painful thing she feels, and every struggle she endures God will bless her and make every moment of her sacrifice worth it.

“The most important thing is to trust God and obey His will. Suffering in this life will eventually come to an end, and God’s perfect mercy, justice, and judgment will resolve all the “why’s” we wonder about now. The Lord loves us and sees the eternal view, so we can trust Him to guide our lives. He promises that our trials and difficulties can work for our good if we’re trying to live the right way.”

Ashtyn being assisted by the nursing staff

Ashtyn being assisted by the nursing staff

Suzanne laying with Ashtyn

Suzanne laying with Ashtyn

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.

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

Preparing For Battle

By | Daily Life, Trials, Uncategorized | 5 Comments

Monday night Ashtyn fell asleep submerged in depression.  I worried about how she would feel when she woke up in the morning.

Around 1:30 pm I realized there were three things that needed to be worked on today:  1.  Ashtyn needed a shower and hadn’t had it in her to take one.  2.  She hasn’t eaten well since being in the hospital and I knew it was important for her to eat. 3.  Mucositis will always be a concern and I wanted to get a head start keeping it under control.  When my concerns became apparent to me, my heart burned knowing I couldn’t help her on my own.  I needed to call upon Ashtyn’s Army to join me in petitioning her needs to God.  So I posted her specific needs right away on facebook and the website to get the word out.  Though she has to be woken up every 2 hours to go to the restroom, she quickly would fall back asleep.  Soon after the posts were up, Ashtyn woke from her night’s sleep at 2 pm.

My brother in law, Wendy’s husband Dave, walked unexpectedly through the doors right as Ashtyn was waking up.  Dave hadn’t been able to visit Ashtyn yet and he “just so happened” to come right then.  After greeting Dave I turned to Ashtyn and doubting she’d have an answer asked “What do you want for lunch?”  It didn’t take her long to say, “A big chocolate muffin.”  I asked, “Are those on the menu?”  She said, “No they only have blueberry. 7-11 has them. And I’d like a  Slurpie too.”  Dave was quick to volunteer his services.  An hour later Dave came back with a blueberry muffin, 2 chocolate donuts, a burrito-just in case, and a Slurpie.  He also had a greek gyro lunch for me.  And yes, he did have a chocolate muffin that he found at another store since 7-11 did not have them.  Ashtyn had the desire to eat and she tried, she really did.  ¼ of the donut was all she could do.

Dave is part of the orchestra.  Today he was there to make Ashtyn smile.  He also came at the right time to get food for Ashtyn and me.  I hadn’t eaten yet and wonder if I would have made my first trip down to the cafeteria to pick myself up some lunch.  Probably not.

Dave visits Ashtyn

Dave visits Ashtyn

Side note:  I have gotten messages from family and friends concerned about me and my health.  Because of the concern and reminders, I am trying to eat enough and take vitamins.  I want to be healthy and strong for Ashtyn.

After Dave left I talked to Ashtyn about taking a shower.  It was 3:30 p.m.  She wanted to relax and take it at 5 p.m.  However by 4:30 p.m. she was exhausted and fell asleep.  The nurse woke her up at 6:30 p.m. and when approached to take a shower she made no fuss.  Without argument she calmly allowed for a shower and used a shower chair to rest.  Success!

Once Ashtyn was clean, lotioned, and comfortable in bed, there were medications to be given.  With effort Ashtyn drank a small cup of Jamba Juice for dinner.  She worked at drinking down her pills.  She did her part, her stomach did not.  She threw up everything in the blue plastic bag she keeps near her.  My brother Jared and his wife Nanette had just arrived to see Ashtyn in her struggle.  Like so many of you, Jared has spent hours thinking, praying, and researching ways to help Ashtyn.  He came to visit Ashtyn with a purpose and had a mission for her to do:  “Ashtyn, you need some fire.  You need to be mad and tell your body that you are in control.  Tell your body what to do. You don’t let people push you around so don’t let your body push you around either. You need to be mad and happy.  How?  Be mad at your body and be happy that you have the choice of how you are going to react.  Ash, it’s probably going to get worse. Like a roller-coaster   Its going to get worse, and then better, and then worse, and you have to fight through it and remember that it will get better.  Promise me, Ashtyn, that you will get mad and fight this.  We’ll be mad together and we’ll be happy together.  Be mad, keep praying to ask for help, fight, and be happy.  And then you’ll get home and be normal.  I bet it will be 6 months. That seems like a long time but Nanette’s been pregnant for 8 months and it will go by fast.”

Jared and Nanette visit Ashtyn

Jared and Nanette visit Ashtyn

He then played this song for her.

When I said that God’s hand will be shown daily in Ashtyn’s life, I meant it.  Yesterday was a day of grieving and depression.  Today was a day to start preparing.  Without knowing it, Ashtyn is preparing spiritually and emotionally for the rough times ahead.  She is inwardly stronger and braver today.  God is helping build her inner strength.  He is helping her prepare for the next battle.  There will be many battles to win. Some will be easier than others.  I don’t know when the next huge battle will come but I do know she will be prepared and she will triumph.

This experience has been so tender.  So special.  So touching.  As I listened to calm music while rubbing Ashtyn’s feet as she went to bed, I felt so honored and blessed to be by her side.  I believe Ashtyn chose before coming to earth the plan that was in store for her.  I believe she agreed to come to earth with the assignment to conquer cancer with courage, strength, and faith.  I believe she willingly accepted the call to have cancer, knowing it was a sacrifice she was making in order to help others.  She will be able to teach patience, faith, trust, compassion, optimism, service, love, and charity.  She will be able to inspire people to care about family and strangers alike.  She will be able to help others recognize their talents, purposes, and strengths. She will soften hearts and bring families together, bond friendships, and rally communities.  She will help others recognize that individuals can change lives and by so doing can change the world.  She will be an inspiration for all to come unto Christ.  And because of her sacrifice and a job well done, she will be blessed.

“I know you are getting many many messages but I just want you to know how much you and your beautiful daughter have changed my life. I worked at Brighton Camp this summer and was so grateful I could know your daughter. I volunteer at Primary’s and hopefully will be stopping by soon. I have gotten to know many children who are fighting with this horrible disease and I understand it is not an easy road. Through hearing about the heartache sweet Ashtyn and your family are going through I have had an answer to my prayers on what I want to do with my life and how I want to help children with cancer. Mainly I want to thank you for sharing your thoughts and your faith with this army of people. I have my mission call but it wasn’t until reading your blog that my faith has increased enough to feel confident in my decision to serve a mission. I know you have many people to help out but if you need someone to organize medical supplies or just clean your house, I would love to help. I have been praying and fasting my heart out as I know many of the other Brighton staff members are doing the same. With all my love! Karen”

The Road To Diagnosis

By | Daily Life, Prayers, Trials, Uncategorized | 9 Comments
Ashtyn and Suzanne

Ashtyn with Suzanne

My brain is mush. I hardly know what day it is, let alone be clear of the events that have taken place Thursday, Friday, and Saturday.  I am definitely at sensory overload and the interruptions to write this seem to be constant.  Ashtyn’s first night in the hospital was one with no sleep.  She had 2 units of blood transfused through the night which meant lots of interruption for vital signs. Even with or without vital signs I doubt any of us would have slept well.  With the silence and lack of distractions, Ashtyn had plenty of time to think and ponder the shock she was living in.  “Is this real?” “Am I going to Die?”  “Mom, this is ruining my plans!!!”  And she did have plans.  Ashtyn had plans to go to school and finish 6th grade. She had plans to continue enjoying our new home, relishing in her bedroom that was her sanctuary with the lime green and electric blue walls with Justin Bieber pictures hanging everywhere.  Ashtyn had immediate plans to help clean a lady’s house in the neighborhood who had a premature baby with the Young Women. She had a plan to learn her new Les Mis song on the piano this week.  She had plans in a few months and looked forward every day for the cruise she was going to go on in April. The Disney Land trip in May. The Lake Powell trip in June. The San Clemente, California trip in August.  Ashtyn had so many plans.

Doctrine and Covenants 121:7  “Ashtyn, peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment; and then, if thou endure it well, God shall exalt thee on high; thou shalt triumph over all thy foes” and then you will go back to school, learn that Les Mis song, enjoy your home, hang with your friends, go on vacations, and do all that you want to do.  You will do these things as a stronger young woman with a refined character and empathy that will change the world.

Thursday the 31st was the day Ashtyn was supposed to have a diagnosis. The important bone marrow aspirate and biopsy was scheduled for 2:30 pm.  Ashtyn was afraid.  “Will it be painful? Will I wake up during the procedure?  Will you and dad be right by me?  Are you going to leave? Is this really happening?  I can’t do this? I want to go home, NOW!  Why me?”  My answer:   “You can do this.  You are strong, you just don’t know it yet.”

The aspirate went well.  Ashtyn was the cutest thing coming out of anesthesia.  She had a conversation with Jason. Here is some bits and pieces:

  • “Who is Justin Bieber?” Ashtyn: “Ummm” “…Is he your brother?” Ashtyn:  “I have a lot of brothers.”
  • “How many do you have?”  Ashtyn:  “Ahhhhhh…  I’ll go home to count them and then call you.”
  • “So one of your brothers is Justin Bieber, right?” AShtyn: “I’ll have to check.”
  • Ashtyn: “Call Casey and if you find out that Justin Bieber’s my brother can he come up too?”

Throughout the rest of the day and night I noticed that when Ashtyn and I were alone, she was more solemn with time to grieve.  With visitors she was distracted from her worries and smiled from time to time.

Friday February 1st started early with a echocardiogram at 7:30.  It was a very thorough one that took a while.  We watched Disney’s Tangled.  Once back to the room they wanted to rush her down to surgery to get a lumbar puncture and central line because there was an opening in the surgery schedule.  The problem was they hadn’t received her results back from her bone marrow to know if she had A.L.L or A.M.L. and she needed a Platelet Transfusion.  They hung the transfusion in the OR and assured me that by the time the prepping was done, they would have the diagnosis.  The plan was to give her a port.  She came out with a broviac.  What is the difference?  A port is given to those who have A.L.L because ports are better for home care.  However her tests were inconclusive of the type of Leukemia. She had neither A.L.L or A.M.L so they chose the Broviac, which is used for patients who do more treatments in the hospital and need a line that is a “double lumen” which means it has two tubes in the line.  In addition to the difficulty getting a diagnisis, the surgeon had a very difficult time getting Ashtyn’s central line to flow through the vein into the heart.  The catheter seemed to keep hitting something that was preventing it from moving forward and would also cause the catheter to bow backwards.  I feel very blessed that, though the surgeon was quite frustrated, she persisted and succeeded in getting the Broviac in the right place.  The Hematologist later confessed that he really wanted Ashtyn to have surgery that day because that particular surgeon is world renowned.  Not a coincidence. *God’s tender mercy*

Surgery wiped Ashtyn out for the rest of the day.  She wouldn’t eat and was in a lot of pain.

I was anxious in the afternoon wanting to talk to the Hematologist and get some questions answered.  Finally at 5 pm he was ready to talk to me at the exact same time my brother Jason and his daughter McKenzie came to visit.  Perfect!!! *Tender mercy*.  Ashtyn doesn’t like to be left alone so I directed them into her room and went to a conference room with the MD. We talked for an hour.  I was told that since Ashtyn didn’t have either A.L.L or A.M.L the plan was likely to treat her for a month as if she had A.L.L and see if she responded.  If she did then they would go forward with the A.L.L protocol.  If she didn’t respond then they would try a mixture of A.M.L and A.L.L treatments.  I was blunt about my motherly instinct feelings. “I know nothing about cancer but I don’t believe she will respond to the A.L.L treatment. I don’t know what she will respond to.  My guess is that she is going to give you a run for your money and eventually get a bone marrow transplant.”  I hope I’m wrong.

For now, Ashtyn’s condition is perplexing and a mystery. The doctors have spent many hours on the phone Saturday making calls around the world discussing the appearance of Ashtyn’s cancer cells in the bone marrow.  They want to discover the mystery and accurately diagnose her cancer before starting treatment.

During the past 3 days I have learned quite a bit.  But one thing stands out to me right now and that is the importance of facing this challenge with optimism.

Gordon B. Hinckley once said, “We have every reason to be optimistic in this world.  Tragedy is around, yes.  Problems everywhere, yes.  You can’t, you don’t, build out of pessimism or cynicism.  You look with optimism, work with faith, and things happen.”

The Beginning…

By | Daily Life, Inspirational, Trials, Uncategorized | One Comment

Wednesday January 30th started with a prayer. “Heavenly Father, thou knows Ashtyn has missed school and has been sick for a couple of weeks.  She has been pale and has had very little energy.  Last night my mom called to pass on a message from my dad that he really feels Ashtyn needs to see a doctor.  You know how my dad is.  He isn’t much of a talker but when he does, he speaks with wisdom.  You know how I am.  I think she just has a flu that she still needs to recover from.  Please help her to get better or tell me what to do. In the name of Jesus Christ, Amen.”

And off we went as usual.  I drove Chandler (13 yo) to Butler Middle School at 7:40 am, picked up my adorable nieces Millie (3 yo) and Ruby (1 1/2 yo) from my sister Alisa to babysit for the day.  Went back home, fed kids breakfast, and hopped in the car at 8:30 am to take Ashtyn (12) and Morgan (10) to Canyonview Elementary.  Ethan (6), Millie, Ruby, and I went back home, got ready for the gym and headed to XCEL Fitness.  At 11:30 am I was ready to head out of the gym when I got a phone call from Canyonview Elementary School telling me that Ashtyn wasn’t feeling well and needed to be picked up.  My heart raced in a way it never has when I get a sick call from school.  My sister Jen was at my side and with a worried face I said, “I’ve got to get Ashtyn to a doctor.”  She asked, “Do you think she could have Leukemia?”  “Yes.” I answered.

When I walked in to the sick room at the school Ashtyn was laying on the bed.  After a few days of protesting a doctors visit, with tears in her eyes she said,  “Mom, I think I need to see a doctor.”  “I know sweetie.”

I got a phone call from Chandler letting me know he didn’t feel well and asked if I could pick him up from school.  “Perfect timing, I will be right there.”  By this time it was 12:10 pm.  Ethan’s school started at 12:15 pm so I dropped him off to Kindergarten at Butler Elementary. With urgency in my heart, I dropped Chandler, Millie, and Ruby to my moms and headed for the Insta-care with the knowledge that Ashtyn needed blood work done to find out if she has mono or Leukemia.

We sat in the waiting room for about an hour and once it was Ashtyn’s turn to see a doctor things started happening with no delays.  Ashtyn was truly terrified  when it took three painful needle sticks to get blood work.  The results quickly came back with a very low White Blood Cell count and low hematocrit. I called Jason to let him know we were heading to Primary Children’s Hospital.  It was 2:30 pm. Jason just so happened to be off work driving home and his dad just so happened to be 5 minutes away and headed to my house to give Ashtyn a blessing. ** I have never believed in “just so happened”.  There are constant tender mercies from God all around us everyday showing us his continual and constant hand in our lives.** I drove Ashtyn home, got her in comfy PJ’s, grabbed her favorite blanket, Justin Beiber pillow and a few other things.  Lorin, Jason’s dad, gave Ashtyn a blessing.  I don’t remember a word he said but it doesn’t matter. I know the power of the Priesthood is the power of God and blessed Ashtyn with what she needed at that time.

Once we got to Primary Children’s hospital at 3:30 pm things happened quickly.  The ER took every blood test they needed, but she was calmer with the needle sticks than she was at the insta-care.  Ashtyn: “I trust them more here.”  We first met with the NNP who talked to us about cancer.  We then talked to the Hematologist who also was leaning towards cancer.  Ashtyn was hearing about cancer when we didn’t even know she had it.  In my mind I wasn’t going to assume she had anything until tests came back.  As far as I knew, maybe she had a severe virus and yes maybe it was Leukemia, but I didn’t want to jump to any conclusions.  By 7:30 pm Ashtyn was taken to the 4th floor and given a room in the ICS Immunocompromised floor.  Ashtyn was scared. She wanted to know what was wrong with her.  She didn’t want cancer.  She didn’t want to be in the hospital.  She wanted to be in school. (“What? You never want to be in school. How perspectives change.”) She wanted to be home.  However she felt how I felt, nervous for the unknown but peace in the heart.

Once settled the visitors came and so did her smile, and even her laugh.

We will face this challenge with upbeat spirits.  There will be times for crying, anger, fear, frustration, doubt, and anxiety. There will also be times for peace, happiness, smiles, calmness, and fun.

James E. Faust, “Everybody in this life has their challenges and difficulties. That is part of our mortal test.  The reason for some of these trials cannot be readily understood except on the basis of faith and hope because there is often a larger purpose which we do not always understand. Peace comes through hope.”