Monthly Archives

February 2013

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.”

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

She Chose This

By | Daily Life, Miracle, Spiritual, Trials, Uncategorized | 18 Comments

Ashtyn and I are spending our 25th night in the hospital.  She is no longer being kept awake by nausea, vomiting, coughing, mucous, diarrhea, bloody noses, restroom runs every two hours, shortness of breath with fluid in her lungs, or an extremely swollen mouth.  She isn’t suffering from a high temperature, high heart rate, or high respiratory rate.  For this we are grateful.  For this my heart rejoices.

Tonight Ashtyn was being kept awake because of sadness.  Sorrow that she can’t go home.  Sad for losing her hair.  Worn out from the pain.  I don’t know what it feels like.  I don’t know what it feels like to not be able to leave the hospital.  I don’t know what it feels like to lose my hair.  I don’t know what it feels like to not be able to eat or drink.  I don’t know what it feels like to not be able to get out of bed and walk around on my own.  I don’t know what it feels like to be stuck to an IV pole with medications constantly going into my system.  I don’t know what it feels like to not be able to shower and go to the restroom in privacy.  I don’t know what it feels like to have strangers coming into my room all the time asking, “How are you?” when clearly I am not OK.   I don’t know what it feels like to have visitors come, only to have them leave and know that I can’t leave with them.  I don’t know what it feels like to have constant pain in my mouth and throat, even though I should be happy they are healing.  I don’t know what it feels like to have leg pain and not feel like rejoicing that it’s a sign the bone marrow is starting to make cells.  I don’t know what it feels like to not want to think about life outside the hospital and what I am missing out on.  I don’t know what it feels like to not allow myself to think of what used to make me happy because those things would only make me sad.  I don’t know what it feels like to have no control over anything other than what side of my body I sleep on, what finger the oxygen monitor goes on, and what TV station or music is playing.

Ashtyn Sleeping WIth Picture Of Jesus

Ashtyn Sleeping WIth Picture Of Jesus

Tonight Ashtyn finally fell asleep at 4:30 am listening to Pandora’s LDS Hymns and looking at a picture of Christ loving children.

When I see the physical and emotional pain Ashtyn is going through, I feel sad and have shed tears with and for her.  However, if I had the ability to take this cancer away from her, I wouldn’t. You heard me right.  I would not take this cancer from her.  Why would I rob her of this life changing experience?

Ashtyn chose this before coming to earth.  She knew the pain she would experience.  She also knew the blessings that would be hers from going through it.  Lives would be changed.  Her life would be changed.  Every moment of her trial will be worth it.  She will never want to give back what she gains and what she learns.  It will be precious to her.  So as a mother, why would I ever take that away from her?  I am happy for her that she is the kind of girl that God has trusted to go through this with faith, strength, and dignity.  God has every confidence in her that she will get through this trial.  I do too.

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

This Kind Can Come Forth By Nothing, But By Prayer and Fasting

By | Daily Life, Miracle, Prayers, Trials, Triumphs, Uncategorized | 11 Comments

My last post was written two nights ago.  Ashtyn’s health had been getting progressively worse with each day.  By Tuesday night she was on the verge of having high risk surgery to remove her appendix.  Diarrhea and vomiting seemed to be occurring every couple of hours.  She had lower lobe pneumonia with an increased respiratory rate and oxygen needs.  The color of her extremities didn’t look good.  Even though she was only getting a small amount of pain medication, she seemed more out of it than she should have been.  Ashtyn wasn’t able to talk well, open her eyes well, sleep well, or walk well.  She had even fallen one time because she got out of bed before I could get to her.  I was very nervous and wasn’t alone with my concerns.  The healthcare team watched her like a hawk.  She kept me and her nurse running constantly.  By 7:30 pm I was so concerned about her declining health.  I told the doctors I thought she needed to be move to the pediatric ICU.  PICU?  That’s the last place I normally would want her to go.  It’s a germ nightmare for a neutropenic patient with no ability to fight infection.  It’s also extremely uncomfortable sleeping in a chair when I have been spoiled by my couch-bed.  But I didn’t know what else to do as I observed the direction she was going.  The doctors considered PICU briefly but held on the idea.  I knew if she went downhill any further she would be moved and monitored in the PICU.  It then hit me what I had to do, call upon Ashtyn’s Army for prayers.  Enough was enough.  We needed to get her better.  I texted my family who suggested we fast.  Who would be willing to fast on a Wednesday and Thursday?  I had no choice but to ask because I knew Ashtyn couldn’t wait until Sunday.  She needed to start getting better right away.  I sent a Facebook message that read: “Because of how sick Ashtyn is I am asking anyone who is interested to fast for Ashtyn starting this afternoon or evening and ending Thursday.  She has pneumonia in her lower left lung that we don’t want to get worse.  She has appendicitis that we don’t want to get further inflamed.  We don’t want her to get an infection.  Mostly we want her to make white blood cells so her body can recover fully and then she will feel better.”

There was an immediate response.  Some started their fast right away.  Others’ prayers became more specific and fervent.

Tuesday night I laid beside her until 6:30 am.  She didn’t want me to leave her side. I described the night in my “Relying on What I Know” post: “She sleeps, goes to the restroom, suctions her mouth, sleeps, throws up, suctions her mouth, sleeps, coughs up mucus, throws up, sleeps, goes to the restroom, and on it goes.

After over a week of her getting worse she began to stabilize Wednesday.  I am not saying she got better.  I am saying she stopped getting worse.  With the start of fasting and prayers it seemed as if her decline had halted.  She did become more alert throughout Wednesday and for the first time in over a week she didn’t scare me one time all day.  She simply hovered in calm stability.  24 hours after asking for prayers and fasting, Ashtyn moved from being “stable” to slowly improving.  Wednesday night was restful.  She didn’t throw up all night.  Her trips to the restroom were minimal.  She was completely alert.  I had 4 hours of uninterrupted sleep.  On Thursday morning the first thing she did was get on her phone and with a great amount of effort and concentration she posted to Facebook  “Please fast and pray for me tomorrow.  I have so much mucus in my mouth that it hurts to eat or drink and I am SO thirsty. Thank you so much.” (I don’t think she realized it was already Thursday morning because she went right back to sleep after the Facebook status was posted.)  She clearly has faith.  She clearly has hope in her Army.

It is now early Friday morning.  All the 24 hour fasts, from those who did so, are over.  There have been 48 hours of prayers petitioning for God’s help with her immediate and specific need to get better.  I will tell you, your prayers and fasting have changed her course.  All concerns have dissipated.  She went from heading to the pediatric ICU to sitting up in bed alert and talking during the day.  At night instead of throwing up and getting up and down, she now sleeps restfully.  Ashtyn was heading downhill and now she is on the road to recovering from this round of chemo.

For 10 days Ashtyn’s temperatures have remained above 101 F after taking Tylenol and climbed to over 103 F before the next Tylenol dose was due.  Today? Her high temperatures were near 101 and decreased to 99.5 with Tylenol!  Amazing!

Ashtyn has not had the TV on for over a week.  Today the TV was on all day.  She started the day watching Soul Surfer.  Then she watched The Incredibles, Lion King, Princess and the Frog, and the Disney Channel.  Ashtyn fell asleep during each movie but it doesn’t matter, she had the desire to watch TV rather than lay in bed in silence.

She was awake a lot more today and talked quite a bit.  Her throat and mouth are still very painful when she talks or swallows.  However when she does talk her words are clear and lucid.  Today I didn’t have to keep the lights off and remind everyone to be quiet.  She was fine with noise and the stimulation’s of the day.  Her legs are steady when she walks and she is less shaky as time progresses.  (I do continue to stay behind her with my arms around her back as she walks to the restroom just to be safe.)  Today I was so excited when she asked to open a few presents.  She hasn’t had it in her to open any presents or cards since Valentine’s Day, which even then she was only able to open a few.  After I showered and got ready for the day she said, “Mom I like your shirt.”  That’s my girl!  Since becoming a preteen she is my fashion consultant because I am horrible at knowing what looks good and she has a really good eye for it.

For the past week I haven’t had very many visitors come because she has been so sick and time consuming.  Today I felt perfectly happy and comfortable having visitors.  Ashtyn had a nasal scope today to test for a sinus fungal infection.  She was completely calm and didn’t move at all when they stuck the camera down her nose.  (The test came back negative.)  Another miracle is she didn’t throw up or have diarrhea one time today.  Prior to today she had occurrences at least every two hours.  After many restless nights of sleep, Ashtyn is sleeping peacefully and didn’t need me to sleep near her.

I know it was because of fasting and prayer that Ashtyn triumphed over this most recent hurdle. That I am sure of.  Mark 9:29 “This kind can come forth by nothing, but by prayer and fasting.”  Thank you so much for all your thoughts, prayers, fasting, and positive energy.  I have been told by different people of different religions that they are praying and sending good vibes for Ashtyn.  Whether it is a prayer from a Mormon, Jew, Catholic, Protestant, or positive energy from a Buddhist, it matters not to me or the God in whom I believe.  He answers prayers and listens to all of his children.

Relying On What I Know

By | Daily Life, Prayers, Trials, Uncategorized | 12 Comments
Ashtyn Getting A Second CAT Scan

Ashtyn Getting A Second CT Scan

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.

She listens.  She understands.  She does what she is asked.  She communicates as best she can.  She is kind.  She says “please” and “thank you.” She feels peace.  She feels hope.  She feels prayers.  She feels God and angels near.  She is faithful.  She is strong.  She is patient.  She is calm.  She wants to go home.  She will do what it takes to get there.

At home my kids and I try to follow three rules individually that collectively help keep peace in our home.  1. Read our scriptures every night and pray morning and night. 2. Give 10% of their time in helping me around the house. 3. Be positive.  I asked Ashtyn today if she was staying positive. When she speaks it is as if you are listening to a pure angel, “I try to stay positive by not dwelling on it and think about when it’s over.”

Today we did all we could to try and ease what she is going through.  Occupational therapy and physical therapy worked on her strength to do daily cares.  Her aunt Wendy spent a couple hours doing guided imagery while listening to yoga music as she imagined herself away from her physical body.  She was then able to imagine herself doing whatever it is she wants to do.  We also used massage therapy, music therapy, touch, and silence.

Ashtyn has had a temperature for over six days which is concerning the doctors.  Each lab work that has been done continues to show no signs of infection.  At noon she had a CT scan to discover whether or not a fungal infection is causing her high temperatures.  The CT scan showed no signs of fungus.  It did show left lower lung pnuemonia and appendicitis.

At 7:30 pm a surgeon came to Ashtyn’s bedside and talked to me about the possibility of having her go to surgery to get her appendix out.  The risks of surgery were high due to her low platlet count, her lack of white blood cells, and her overall post chemotherapy condition.  The risks of not taking her appendix out were infection and decline in her health.  I was told that the health care team would come to a consensus and let me know.  I got very nervous.  My hands shook.  My heart raced.  I cried.  I texted family.  I let Ashtyn’s Army know of her need for prayers.  1 ½ hours later the decision was made to not go forward with surgery.  I understood their reasoning.  Her mucositis is so severe that her appendix may be simply inflamed just like everything else.  Even though she is extremely sick the oncologists think she is still reacting within the spectrum of chemo patients, just on the very severe end of the bell curve.  The thinking was if they went forward with surgery and took out her appendix it wouldn’t help in her recovery from chemo.  The doctors also felt that the risk of rupture wasn’t as high as a normal child because Ashtyn doesn’t have the white blood cells that normally help with inflaming the appendix to the point of rupture.  Interesting.  I asked family and facebook friends to pray that the doctors would do what needed to be done.  I am grateful for the immediate response.

At the beginning of the day I felt peace, and then I didn’t, and then I did, and then I didn’t.  During the night I have felt peace.  It is 6:30 am.  Yoga music from Pandora played all night.  She asked me tonight to lay with her because she sleeps better that way.  She sleeps, goes to the restroom, suctions her mouth, sleeps, throws up, suctions her mouth, sleeps, coughs up mucus, throws up, sleeps, goes to the restroom, and on it goes.  When she did fall asleep in my arms or next to me, I couldn’t help but get tears in my eyes laying next to this perfect earthly angel.  I have always, from the time she was a baby, called her my Angel Ashtyn.  Her soul has always been angelic to me with her tender kind heart, her desire to make people feel loved and included, and her testimony of God and her Savior. I am so proud of her as I know you all are.  She truly is handling this trial with the most admirable character. Through the night I have reminded her how loved she is and what a remarkable example she is to us all.

February 3rd I wrote a post called “The Road to Diagnosis “  It was the day she was diagnosed with undifferentiated Leukemia.  The doctors thought that a possible course to try with Ashtyn was to get her home and treat her for a month using the acute lymphoblastic leukemia (A.L.L) protocol and see how she responded.  In my post I wrote:  I was blunt (with the oncologist doctor) 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.”

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.  If other chemo kids reacted the way Ashtyn has, they would decrease the dose of which they give.  She has the rarest form of Leukemia and has indeed been giving them a run for their money.  I believe she will continue to do so.  I believe she will go through her cancer course the way God wants and according to His plan.  There is a purpose in her struggles.  There is purpose in her taking the most difficult road.  Good and bad days will come.  I feel our faith will be tested and stretched to the max during her journey.  There will be times when we will be tempted to lose our faith and let doubt come into our hearts.  But I believe with everything in me that she will triumph.  And when she does we will have no question how she got there and why she is alive.  It will not be by chance and it will not be by coincidence.  It will clearly and poignantly be because of God’s mercy and miracles brought about by the faith, prayers, and fasting from you.  My prayers alone will not be enough.  I know that to be true.

“Even if you cannot always see that silver lining on your clouds, God can, for He is the very source of the light you seek.  He does love you, and He knows your fears.  He hears your prayers.  He is your Heavenly Father, and surely He matches with His own the tears His children shed.”  Elder Jeffrey R. Holland

*** Because of how sick Ashtyn is I am asking anyone who is interested to fast for Ashtyn starting this afternoon or evening and ending Thursday.  Her heart rate is high.  Her respiratory rate is high.  Her temperature is high.  She has pnemonia in her lower left lung that we don’t want to get worse. She has appendicitis that we don’t want to get further inflamed.  We don’t want her to get an infection.  Mostly we want her to make white blood cells so her body can recover fully and then she will feel better.***

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

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.”