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Gods Orchestra

Perspective

By | Daily Life, Looking Up, Trials, Uncategorized | 11 Comments

Ashtyn and I have different perspectives of time. We have been in the hospital for 27 days and it has gone by very fast for me. There is not a moment of boredom where I can kick up my feet and wonder what I should do with my time. There is always something to do. When Ashtyn was really sick her needs were the same whether it was day or night. I slept when the opportunity presented itself. We never had more than a couple of hours of sleep without an interruption of one kind or another. Days and nights were intermingled with sleep and activities. After so many nights of interrupted sleep and days of constant physical or mental tasks, I am tired. Very tired. I think I could curl up in bed and sleep for a couple of days, begging that no one interrupts my sleep.

Ashtyn shared her perspective of time today, “I’ve been in the hospital a long time. It seriously seems like a year. Every day goes by slow.”

Facing cancer means that you face physical and emotional challenges. The week Ashtyn was diagnosed with cancer, she felt and had to deal with emotions she had never had to conquer before. From my post “God’s Orchestra” on February 5th, I wrote: “Today was a day that she grieved. Grieved for losing the life she once knew. It was a day of sorrow for not being able to go home. It was a day of stress with all the medications, vital signs, medical talk, and being attached to an IV pole. It was a day of depression, not wanting to socialize. It was a day of frustration with not having control of anything.”

The two weeks following she became very sick from chemo. She had physical pain that she hadn’t faced before. She remembers the pain and not being able to speak or swallow. From the post “Relying on What I Know” I wrote, “Ashtyn is sick. Very sick. She can hardly talk. Can hardly open her eyes. Can hardly walk. Can hardly sleep comfortably. She can’t eat. Can’t drink. Can’t laugh. Can’t cry… Today the doctors informed me that she has the worst case of mucositis, the worst side effects from medications, and the worst complications from chemo.”

Now that Ashtyn is feeling physically better with each day, she has to again deal with more emotional struggles. Her temperature, heart rate, and respiratory rate are normal which gives her more of an ability to focus on the ramifications of cancer. Now that she isn’t on oxygen, throwing up, coughing up mucous, or having continual medical staff around her, she has the strength to contemplate every moment she is in a hospital bed. Now that her eyes are wide open and she isn’t sleeping all day, Ashtyn has the time to long for the life she once knew.

Last night I talked to her about shaving her head. The only hair remaining was a thin layer that seemed to be holding on for dear life. Obviously she needed to shave all her hair so when it grows back it will do so evenly. This week seemed to be the week to do it. I validated her feelings by letting her know that it was going to be very difficult. I suggested that instead of just having me and her dad there, that she invite a few family members to be by her side to support her in this milestone. At 9 pm we gathered together in her room. I got special permission to have more than two people at the bedside. She had her two uncles Jared and Casey, her two aunts Alisa and Kristi, her dad, and me there to get her through it. Though she had agreed with the plan several hours previously, she sat on the couch curled up in a ball, “I don’t want to do it.” She was holding on to the small amount of hair she had, not wanting to let it go. What would she be letting go of if she let go of the remainder of her hair? Maybe the last bit of hope that she wouldn’t actually have to be bald. Maybe the last amount of hope that she doesn’t really have cancer but instead has a bad case of mono. Maybe it is holding on to the last thing that makes her who she is, when everything else has been taken away. Whatever the reason, she didn’t want to do it. There are a lot of things she hasn’t wanted to do in the hospital but she has always faced the challenges calmly without kicking and screaming, and does what she has to do.

Ashtyn didn’t want anyone to shave their heads to support her. It wasn’t a need she had. I don’t think she wanted to look at others bald since that wasn’t normal to her and she didn’t want to be reminded of her own baldness. To help Ashtyn get used to the electric razor, her uncle Jared sat on a stool for her to practice on. She used a number 7 hair clipper to trim the back of his head. After several swipes she didn’t want to do anymore. Her uncle Casey finished trimming the back of Jared’s head to even it out. After Ashtyn was able to handle the razor and watch Casey’s shaving skills, she was as ready as she was ever going to be. She sat on the stool and bravely allowed Casey to shave her head. She didn’t fuss, complain, or cry. She just took it. Afterwards she laid on the couch with a blanket, closed her eyes like she was asleep, and didn’t say a word. Jared sang a song with his guitar about her old and new hair. She did quietly laugh a couple times. When the song was done, her support team gave her kisses and left. We sat in bed and laughed a few times while watching Modern Family. At 2:30 am we fell asleep together in her hospital bed without ever speaking a word about what had happened that night.

Today she is struggling emotionally. She knows she needs to be happy at times. She knows she needs to be optimistic and find joy in her journey. She knows the importance of not forgetting who she is. She is a happy, funny, beautiful, smiling angel. She knows not to lose that light within herself. But not today. Today is a day to feel emotions that are real and understandable. “I am bummed just like anyone else would be.” Today she doesn’t want visitors. She wants to be left alone. She doesn’t want to talk. She doesn’t want to be talked to. I can tell that she is going through something she feels she has to do alone. Is she feeling anger, depression, sorrow, remorse, irritation, or discontent? Probably. However, I can’t ask her about it. It is my role to sit quietly in the corner, giving her space and time to feel what she needs to feel. But as she faces her emotions quietly within herself, I know she doesn’t feel alone. She does know there are hundreds of people that care. She does know there are hundreds of people that pray for her and support her. Ashtyn may need to sit in her hospital bed, by herself, in silence. She may feel she needs to be left alone without reading your encouraging words, or seeing people around her bed, or feeling the hugs of others. She may want to have time alone to go through the realization and depression of cancer and losing her hair and everything else she has lost when cancer came into her life. But as she faces her emotions “alone” for now, she knows she is not truly alone at all.

So here we sit in silence. I don’t know what she is thinking about or what is going on in her heart. Whatever she is going through, I know she’ll figure out for herself how to face the future. I believe she will face it exactly how she’s been doing it so far, with faith, optimism, and courage. She will rediscover her strength and abilities. She will recognize her inner and outward beauty. She will continue to lean on her Army for support, love, and prayers. She will press forward with hope and faith, remembering “Don’t give up. Don’t you quit. You keep walking. You keep trying. There is help and happiness ahead. Trust God and believe in good things to come.” Elder Jeffery R. Holland

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

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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