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Looking Up

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.

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 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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