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Determination

beautiful Ashtyn

By | Daily Life, Uncategorized | One Comment

My good friend, Lisa Harbertson Photography, took these photos of Ashtyn soon after we were released from the hospital following her bone marrow transplant. We knew Ashtyn’s hair would grow back and we wanted to capture her as she was at that moment. I am so grateful for these photos of my brave girl.

If you like these photos of my sweet girl, go to Lisa Harbertson Photography’s FB page and give her more LIKES, she is an amazing photographer…
https://www.facebook.com/lisaharbertsonphotography
You can also find her website at www.lisaharbertson.com
Below are her words and photos about Ashtyn…

“This is Ashtyn and I am blessed and lucky to call her my friend. I have known her since she was born. My husband and I met her parents when we moved next door into our first apartment as newlyweds. 14 years ago! We became bosom friends. When Ashtyn and her 2 siblings were babies and toddlers they filled up a big hole in our hearts caused by infertility. We loved them like our own children. Years have passed and life is busy, distance in miles has come between us, we have had 4 children of our own (hole in heart is gone thank you to the heavens!) – but we will ALWAys have a special place in our heart for these children. When Ashtyn was diagnosed with a rare form of leukemia this past February, our hearts were broken and humbled in prayer for this sweet girl. The things Ashtyn at 12 years old has endured will be more than many of us endure and overcome in a lifetime. Her current health and continued life has only come about with modern medicine and lots and lots and lots of prayers and faith. If you want to be inspired and strengthened, read her story in her own and her mother’s heartfelt words at Ashtyn’s Army.

Ashtyn was recovering from her chemo and bone marrow transplant and was barely home from the hospital when she asked me to capture her in photographs. I really have never felt more honored as a photographer. Not honored that I was asked, but honored that I had the privilege of spending time with her and photographing her at this significant moment in her life. She had beat cancer. Overcome the odds. Was living proof of miracles. When I was alone with her in the room I really felt like I was with an angel. I know that’s what an angel would be like. I asked her to write a few things on paper. She couldn’t write so I wrote for her. After all the pain, grief, and trial she’s endured, she told me to write, “God is Good.” What an example. She walked into my studio as feeble as a 95 year old lady. She had her throw up bag next to her the whole time. We took lots of breaks for rest. In the picture by the tree we were cheering and screaming “you beat cancer!!” – it took her all the energy she could muster to lift her arms up high. It was the middle of Summer and she was shivering with cold and needed a blanket. Yet! Yet here is this 12 year old girl, with a smile on her face and a true sparkle in her eyes. Angel Sparkle!! Like I said, lucky to know her, lucky to spend the evening with her.

I love you Ashtyn. You have made more of an impact on my life than you could ever know. Now you go girl and travel many more roads and watch many more sunsets! You Are Strong.”

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Bootcamp

By | Daily Life, Uncategorized | 7 Comments

I am amazed as I look back on the past week.  Saturday and Sunday I asked for anyone who could to fast and pray.  We wanted Ashtyn’s rash to go away, her throat to feel better, and her white blood cell count to go up.  When I woke up Monday morning why was I disappointed that her rash wasn’t gone, her throat wasn’t healed, and her white blood cells weren’t where I wanted them?  That’s silly.  Why would I not think that even with God’s help, her body still needed time to recover?  Of course her body should take its natural course to heal and the healing process absolutely started Monday.

I am so grateful it did take time for the healing process to take place.  On Monday Ashtyn wasn’t ready physically or emotionally to go home.  From Monday through Friday night, Ashtyn’s rash did heal to where she is now comfortable in her skin.  The rash is no longer itchy and “ugly.”  Her skin has returned back to its normal color, other than her lower legs which have almost cleared up.  From Monday through Friday, Ashtyn’s throat went from not being able to swallow a pill to eating burritos, corn flakes, cake, and pickles.  On Monday all her nutrition and medications were being given through her IV.  By Friday night she was ready to be completely off anything IV.  From Monday through Friday, she went from having such a difficult time even walking to the bathroom to not needing assistance when walking in the halls.  Monday through Friday, Ashtyn went from not wanting phone calls with her siblings or visitors at her bedside to enjoying socializing.  Monday through Friday, she went from being solemn to laughing, joking, and smiling.  I have not seen Ashtyn be her true self since she got admitted to the hospital. However the happy Ashtyn is back.  She is sassy, makes jokes, and laughs at herself.  That’s my Ashtyn.  A girl who will walk out the hospital doors and embrace the few weeks she has at home.  And when the time comes, she will be ready to return to the hospital and kick butt again.

Your prayers, fasting, support, and positive vibes during the past week have brought an incredible change in Ashtyn’s physical, emotional, and spiritual health.  Blog posts from the past week included lessons we learned about faith and patience.  I wrote about her emotional and social progress.  Ashtyn also wrote a post sharing personal feelings about her experience this month and her testimony of God.  It really was a week of miracles.  A week I know will give us lasting strength and perspective.

Looking back during our stay at the hospital, I am so grateful for how her first course of chemo went.  That sounds odd.  How can I be grateful that she had the worst side effects from chemo, the worst case of mucositis, the worst effects from medications, the worst body rash, an ICU visit, more platelet and red blood cell transfusions than I kept up with, and the slowest recovery?  Well, next time we will all be better prepared for the challenges that will come.  In 37 days Ashtyn faced severe physical pain from all her body went through, emotional pain accepting the reality of cancer, and spiritual pain feeling angry at God and learning He will never abandon her.  She truly is so much stronger today than when she first walked into the hospital.  After this month, I have no doubt she can get through anything the future holds for her.

Her white blood cells have not improved to where Ashtyn can go home yet.  We are just holding onto what we have learned so far.  Stay faithful, optimistic, and patient having hope and trust that God has a merciful plan.

Getting Ready to Get Out of Here

By | Daily Life, Looking Up, Triumphs, Uncategorized | 15 Comments

I knew the first week Ashtyn was diagnosed with cancer that it was going to be a long road.  I also knew that there would be bad days, good days, scary days, peaceful days, unpleasant days, enjoyable days, dark days, and fun days.  Today was a good, peaceful, enjoyable, and fun day.

Nothing spectacular happened… well actually it was spectacular to me.  For her noon breakfast Ashtyn ate 2 silver dollar pancakes, a few grapes, and half of a chocolate chip cookie.  For lunch she ate 1/4 of a Lone Star bean and cheese burrito, 2 pickles, and some juice.  For dinner she finished 3/4 of the bean and cheese burrito and drank some hot chocolate.  For her 2:30 am snack, she ate a pickle.  Now Ashtyn only has to have IV fluid nutrition running through her central line 12 hours a day instead of 24 hours.  That means 12 hours during the day she isn’t hooked up to an IV pole!  That’s so cool!

Ashtyn walked around the unit without an IV pole for the first time ever.  When walking, her endurance is improving.  A few days ago she could only handle walking for about 10 minutes.  Now she can walk for a bit longer.  The most difficult part about walking is leg pain.  For some reason her legs feel sore and the muscles are painful when she walks or moves.  Physical therapy worked on stretching exercises for her to use.  She has never allowed the integrated medical team to work with her.  Integrated medicine provides what I call “pleasant hospital extracurricular activities” such as massage, aromatherapy, and yoga.  Today she allowed an integrated medicine doctor to massage her legs when in the past she always said no.  She enjoyed it and will ask the doctor to use more pressure next time.  Ashtyn has also refused to have them do yoga with her.  Now that she is experiencing so much leg pain after being stuck in bed for so long, she is going to let yoga specialists come to her bed 3 times a week when she comes back for her second round of chemo.

This entire month has been a learning process on many different levels.  One level is learning what we will do differently during the next round of chemo.  We figured out that obviously Ashtyn needs to move and stretch her legs more during the month hospital stay.  I need to move and stretch her legs throughout the day when Ashtyn is unable.  Another thing we learned for next time is how we are going to decorate her hospital room differently.  When we come back we are going to decorate her room with beautiful nature pictures.  Maybe pictures of colorful flowers, serene greenery, and spectacular sceneries.  She also wants to hang a few pictures of Christ rather than Justin Bieber posters.  Ashtyn mentioned that during the next round of chemo she is going to be even more brave.  As long as her mouth isn’t sore, she’ll want to talk to her siblings on the phone more often.  She may even be settled enough to express gratitude more often for all the small acts of kindness that surround her.

Every morning the first thing I naturally ask the nurse is, “what was Ashtyn’s white blood cell and absolute neutrophil count this morning?”  Today her WBC count was up slightly with a ANC remaining at zero.  I’m not sure when Ashtyn will be able to go home but I am hopeful it will be within a few days.  Tonight I started packing up her room.  Six bags were filled and sent home.  As I was gathering her items, I was so touched by the support she received during this first round of chemo.  The gifts, cards, prayers, messages, and Facebook “likes” have brought so much strength.  I feel horrible because I can’t thank everyone individually.  I feel bad because I haven’t been able to write thank you notes for all the kind deeds that have been done.  Those who dropped off gifts and cards have not been thanked.  Personal gratitude has not been expressed for the 30 plus meals that have been dropped off to my house.   Are people wondering if their efforts have gone unnoticed?  Believe me, everything has been noticed and greatly appreciated.

Ashtyn was a lot of fun to be around today.  I wish each of you could spend time with her.  She is funny and has an amazing smile.  Today she wheeled and dealed that if she did ME the favor of taking a shower without much complaint, I would have to massage her legs. She joked around, talked a lot, and smiled.  But the stinker will not let me take a picture of her.  Right when the camera comes out, she won’t comply with a “happy” photo.  “Mom, I’ll take one when we get home.  I will even take one when I am in the car… or even in the wheelchair getting pushed out of here.”  No amount of bribing would get her to let me post a picture of her.  I threatened, “I’ll ground you.”  Confidently she said, “You can’t ground me! I can’t go anywhere.”  My reply, “I can ground you from The Cosby Show or from your Tum-E Yummies juice.”  It didn’t work.  Stinker.  But just to let you know, I am going to post happy pictures of Ashtyn the second I can manipulate her into letting me.  She is such a tween.

So here I am as happy as if I were in Disneyland.  I am hanging out with my daughter watching hours of The Cosby Show.  What parent gets to spend 24 hours a day, seven days a week with their 12 year old?  I feel very fortunate.  This weekend, like every week since being in the hospital, I am going to go home for a few hours and give Chandler, Morgan, and Ethan huge hugs, tons of kisses, and absorb every second I am with them.  I hope Ashtyn will be able to join me this time and that we’ll get to stay home for a little while.  

Consider the Blessings

By | Daily Life, Looking Up, Triumphs, Uncategorized | 12 Comments

Ashtyn looks so much better than a week ago.  She isn’t nearly as sick, however she still feels crummy.  Of course she does.  I have no idea what it feels like to have no white blood cells, low platelets, and have a body that is recovering from chemo.  Her throat and mouth continue to hurt.  Swallowing is still painful.  She does try to drink a sip or two of water a day.  She has a rash that is affecting most of her body.  Her white blood cell count hasn’t gone up.  The thought is that she’s probably making white blood cells but they are being used to heal her mouth and throat before being counted in her blood tests.  Most of her medications were stopped once she no longer had a temperature.  She continues to be on a couple antibiotics, IV Benadryl for her rash, one medication for nausea, and a narcotic every two hours for pain.  Today she had another platelet transfusion.  IV nutrition is continuously going through her central line since she is still unable to eat or drink.  On the up side, she is no longer being annoyed by thick mucous in her mouth and lungs, and she is walking and talking well.  The last time she left her room was when she visited with her brothers and sister, posted under “Ashtyn’s Siblings Come To Visit.”  After 16 days she left her room and walked in the halls with physical therapy.  You go girl!

Ashtyn Walks Down Hall

Ashtyn Walks Down Hall

We are both on a nocturnal schedule.  Right now it is 3 am and Ashtyn is wide awake watching the Disney channel.  She normally sleeps all day, with occupational or physical therapy waking her to do some sort of activity at 2 pm.  She is never happy being woken up.  After 4 pm Ashtyn’s body finally wakes up and doesn’t really fall back asleep until after 2 am.  The medical staff informed me that this “habit” isn’t abnormal.  Good.  That makes me feel less irresponsible.

Ashtyn does look forward to when she gets to go home.  Whether she goes home in a week or two,  it seems far distant for her.  “It seems like my throat will never feel good to where I can drink without pain.  It’s hard to think that I will actually be able to sit in a restaurant and drink without any effort.  It doesn’t seem like I will ever get to where I feel good.”  Being the talker that I am, I always have something to say, “Ashtyn, remember when you would get sick from time to time throughout your life when you didn’t want to go to school? You didn’t feel up to doing anything except sit around.  Eventually you always would feel better and back to yourself.  I know you aren’t feeling well right now.  Soon you will.  You will then feel up to talking to people on the phone, having visitors, and FaceTiming friends and family.  You will want to look in the mirror and notice how beautiful you are.  You will enjoy coming up with cool fashions you can do with different hats.  You will feel well enough to be happy and have fun.  It will come.”  She agreed.

I decided to start a nightly routine having Ashtyn tell me five things she is grateful for that day.  Tonight was our first night so she came up with ten things.  Ashtyn is grateful…

  1. “for the Broviac and that I didn’t get a port.”  (A lot of leukemia patients get a port that sits underneath the skin.  There are pros and cons to each.  With a port a needle poke is required to access it at least every week.  I’m not an expert on ports.  Ashtyn is just grateful for her Broviac central line because she never has to be poked with a needle.)
  2. for blankets.
  3. hydrocortisone cream that helps my itchy rash.
  4. that one day I will be able to drink.
  5. for beds.
  6. for tissue.
  7. for lotion.
  8. for technology to text, call, and FaceTime.
  9. for Chapstick.
  10. for prayers.

President Thomas S. Monson reminds us, “We live in a unique time in the world’s history. We are blessed with so very much. And yet it is sometimes difficult to view the problems and permissiveness around us and not become discouraged. I have found that, rather than dwelling on the negative, if we will take a step back and consider the blessings in our lives, including seemingly small, sometimes overlooked blessings, we can find greater happiness.”

Ashtyn’s Army

By | Daily Life, Looking Up, Prayers, Triumphs, Uncategorized | 23 Comments

Ms. Fricker, one of Ashtyn’s teachers at Canyonview Elementary school, commented “Know the saying ‘it takes a village to raise a child?’  Well, it takes an army to kick cancer’s butt out of that village.  Help show Ashtyn she has an amazing army behind her. She is a tough little girl and is fighting one heck of a battle.”  She is completely right.  Ashtyn is fighting one heck of a battle.  More importantly, it is going to take an army for Ashtyn to triumph.  I have never been more sure of anything.

I sometimes fear the spark in the Army will die down.  I panic to think what we would do without you.  I am certain of Ashtyn’s outcome if the Army loses faith or ceases praying for her.  But the moment the fear comes it is replaced with faith in the Army.  I know we won’t be abandoned.  Ashtyn won’t be forgotten.  We have soldiers on the front line fighting.  We have soldiers standing back with prayers in their hearts waiting for the call to attack.  And when the most fierce attacks are needed, I have no doubt that the entire Army will stand together united in strength and faith to pray, serve, and send all their positive energy with determination to not quit until that battle is won.  The Army will then stand on guard for the next battle.  And so it will go until all battles have been won, the war is complete, and Ashtyn stands triumphant with complete health.  But health is not all she will have gained.  She will look around at the thousands of members of her Army.  She will see thousands who have hearts like God and love like her Savior.  She will see thousands with faith that will change the world.  Thousands with hope that will change lives.  Thousands with goodness that seeps into countries and states.  Thousands with tenderness that improves communities.  Thousands with perspective that strengthens families.  Thousands with purety that softens homes.  And then she will know that because of her strength and faith and the strength and faith of her Army, lives were changed for good.  Her life will be changed for good.  And then she will take her health and all that she learned from you, and will press forward to the next war she’ll have to fight.  She will continue on with life triumphing over all that is in store for her.  There will be no stopping her.  And there will be no stopping you.  Together this world will be forever better and forever changed.  That is what Ashtyn’s Army will do.

Who is a part of Ashtyn’s Army?  You.

Ashtyn’s Army includes family members, friends, and strangers.  However we are all “family” bonded together, united in a common cause.  The Army comes from all cultures, religions, and walks of life.  We couldn’t have it any other way.  We need religious and non religious.  We need spiritual and non spiritual.  We need young and old, male and female, rich and poor.  That’s what makes the Army powerful.  Power comes from the unique gifts and talents each individual has to offer.  Power comes from each individual heart and mind.

One thing the Army has in common is each member has a good heart.  Hearts that are sensitive and tender to the suffering of others.  Hearts that rise up to do good.  Hearts that rely on faith in all it’s unique forms.  Hearts that care about others instead of only thinking of themselves.  Hearts that have hope for a better world.  Hearts that know this world is not as dark as some might wish us to think.  Hearts that know the power of prayer.  Hearts that know the power of optimism and positive thinking.  Hearts that are confident and strong, willing to do what it takes to make a difference.  Hearts that know even the smallest act of kindness or the shortest prayer or the slightest bit of hope is power enough to cure a child of cancer.

Thank you for being a part of Ashtyn’s Army.  Ashtyn has recieved letters, messages, cards, balloons, blankets, necklaces, fun activities, books, stuffed animals, and gifts of all varieties.  I have family and friends waiting for word to come to the hospital to entertain, uplift, and support Ashtyn.  There are others actively bringing me meals and taking care of my needs.  Many people work behind the scenes, giving of themselves and sharing their gifts and talents.  Ashtyn’s elementary school has rallied around my family.  Chandler’s school staff are supporting him. There is a photographer documenting milestones and an IT computer expert building and managing her website.  We have amazing friends and neighbors who bring dinner to my children every night.  Each Monday my house gets cleaned by two dear women.  My family tutors, entertains, and carpools my kids to their various activities.  There is a friend who moved into my house to be the at-home caretaker.  Others invite my kids on fun outings, give hugs, and provide them with needed attention.

There are church congregations around the world remembering Ashtyn.  Her name has been added to prayer chains in different religions and is on the prayer lists at L.D.S. temples in many locations.  She has been enrolled under the special patronage of Our Lady of Lourdes in France and Illinois.  There are many families who pray for her morning and night.  Children include Ashtyn in their prayers daily.  Fasting and prayers have been dedicated to her with her specific needs in mind.  Hundreds think of Ashtyn and hope the best for her.

Ashtyn has heard from people all across Utah and the Salt Lake Valley.  Support has also spread around the country and across the world.  She has heard from people in California, Idaho, Nevada, Arizona, Colorado, Missouri, Georgia, Virginia, Florida, Washington DC, upstate New York, Quebec Canada, Ghana West Africa, Botswana South Africa, Japan, Argentina, and Venezuela.

I am in awe at the strength of Ashtyn’s Army and how it has changed her life already.  Every member is valued. Every member is needed.  Indeed it does take a village to raise a child just as surely as it will take an army to kick her cancer’s butt out of that village. Thank you for being apart of Ashtyn’s Army.

“Cancer may have started the fight, but we will finish it.”

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.

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