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Prayers

Are We Really Strangers?

By | Home Life, Prayers, Triumphs, Uncategorized | 12 Comments

Since Ashtyn was diagnosed with cancer at the end of January, we have received many messages on the website and Facebook  Many times we have heard phrases such as, “I don’t know you.” “We have never met.” “I just came across your blog.” “You don’t remember me Ashtyn, but I knew you when you were young.” “Although I haven’t seen you in years Suzanne, I want you to know I am thinking and praying for you and your family.” “I can’t stop thinking about you and Ashtyn.”

“Ashtyn, we haven’t met, but I found your Facebook page by chance. I have read about you and your family, and shared your story with my family.” Angela

“Ashtyn, you don’t know me, but a few days ago I came upon your story. I read some of the entries, cried, read some more and cried more. Ever since then I haven’t been able to get you off my mind.” Stormy

“After seeing your daughter’s name I had to read her story. (I have an Ashtyn too.) Add us to the list of your growing army. Sending more love and prayers your way.” Brooke

“You don’t know me, but I love and care deeply for you and your family. God Bless you, angel girl.” Gigi

“Even though I haven’t met her and don’t anticipate that I ever will, I have felt such love and compassion and sincere prayer for her. It’s been a blessing for me. I have experienced deeper spiritual joy and awareness. Hang in there, Ashtyn! You are amazing!” Brenda

“I have been reading your story everyday for the past month. I think it is about time I wrote a comment. We have never met and I don’t think we ever will. But I’m praying for you! Get well soon Ashtyn!” J.J.

“So many of your brothers and sisters that you’ve not yet met on this earth are rooting for you.” Swann

“Ashtyn, though we are strangers, I want you to know how happy I am for you! You keep being YOU! You are strong. You can do this! Enjoy your time at home sweet girl.” Tara

But are we really strangers? No one in Ashtyn’s Army knows all the members, but I just don’t believe any of us are strangers. At least to me it doesn’t feel like we are. We all have similar feelings of love for this young girl. We all have been inspired and uplifted in some way. We all feel heavy in our hearts when she struggles and overjoyed in her triumphs. We all want the best for her. If you have read all the blog posts from the time Ashtyn was diagnosed with cancer, you know as much as I know. You don’t know any less than I do and are walking beside us every step of the way. Many people feel they know Ashtyn though they have never met her. We too feel a connection to you. When I receive a message from a “stranger” I don’t feel it is from a stranger at all. I feel it is from a friend who cares for and loves my daughter. How can I not love you back?

I have wondered on several occasions why Ashtyn has touched so many hearts. I don’t know for sure but one thing I do know, it’s not me. I can write a blog all day but no one will care unless their hearts are touched. I believe the Spirit is touching hearts because of Ashtyn’s spirit. She needs you and maybe you can benefit from her as well. It really is remarkable and such an amazing feeling to have a literal connection to hundreds of people. You are not strangers to me.

So you know what we should do? Once Ashtyn has triumphed over cancer and the war is over, we need to have a party. We need to gather together, meet face to face, and celebrate what Ashtyn has accomplished through the help and prayers of her Army. It will only be fitting to celebrate a war that has been won with the Army that got us there. We will gather as non-strangers and Ashtyn will be able to see with her own eyes the hundreds of people that rallied around her. She will be able to see those that lifted her up for months and gave her the strength and power to accomplish what she wouldn’t have been able to do alone. A victorious party is what we will look forward to.

Now for the update: Ashtyn and I continue to not be able to sleep at night and are exhausted during the day. It is unfortunate because we are not awake when everyone else is. I was tired during the day and hardly effective around my house. Ashtyn slept the entire time her siblings were at school, however she was awake the rest of the evening. Even though it would be ideal to be on the same day schedule as everyone else, Ashtyn and I do enjoy the peacefulness of the night. I am sure that is the reason we got into this predicament in the first place. The hospital is very quiet and peaceful at night. Ashtyn preferred sleeping through the chaos of the day and enjoyed the nights when she would not be bombarded by people. Tomorrow we have to wake up and go to the hospital for a bone marrow aspirate and biopsy at noon, so hopefully we will start our transition to being on a day schedule.

Ashtyn seems to have a lot of cravings for different kinds of food. She always craves pickles and salt and vinegar chips. Other cravings that are on the list include a grilled cheese and peanut butter sandwich with a pickle from Melty Way. She has asked for a Nutella crape cupcake from The Sweet Toothfairy. Before going back to the hospital she really wants to go to Olive Garden and Bonsai Japanese steak house, where they cook all the food in front of you. Tomorrow she is already looking forward to having a vegetarian subway sandwich with a bag of salt and vinegar chips. I am so grateful she has an appetite and cravings. She is too. Getting a lot of nutrition will help her during the next round of chemo.

FROM ASHTYN: “Today I was thinking about Disneyland and had a feeling I will be able to go. I thought about eating the big pickles and hard scooped ice cream you get on Main Street. I thought about going on rides like Space Mountain, Splash Mountain, Thunder Mountain, and Matterhorn. I pictured going to the Golden Horseshoe comedy show with the chili bread bowl. We will go to Cars Land and get another pickle that they sell at the entrance. I won’t be able to go on the Grizzly River Run because it would get my broviac line wet or Screamin because the seatbelt will hurt where the line is. That’s OK  I pictured walking early morning to Disneyland and going through the entrance. It would be so cool. I really need to have an absolute neutrophil count of 1000 to go to Disneyland. Yesterday I was still at zero. All I really want right now is to go before I return to the hospital. That is my main goal. Please pray that I will be able to get my white blood cells up. I really hope it will go up within a week and a half. I am worried because I think I will have to go back to the hospital in about 2 1/2 weeks.

Patience will Pay Off

By | Daily Life, Prayers, Trials, Uncategorized | 10 Comments

Saturday and Sunday many people prayed and fasted for Ashtyn.  We prayed for her specific needs that her rash would go away, her throat would feel better, and her total white blood cell count (WBC) and absolute neutraphil count (ANC) would go up.

Sunday night Ashtyn wanted me to sleep in her bed with her.  “It makes me know you are by me and makes me less scared.  I’ve just had too much of this and I’m anxious to get home.”  Because our schedule is backwards right now, we finally fell asleep at 5:30 a.m.  By 8 am the hospital woke up, medical staff started coming into her room to do what they needed to do, and her IV pumps seemed to alarm regularly.  In addition, Ashtyn wanted me to rub her back and arms constantly to help with the itchy rash so she could sleep better.  By 10 am I was exhausted and frustrated.  With irritation I wondered, “after all the prayers and fasting, Ashtyn’s WBC count is still 200?  Her ANC is still zero?  She had a couple of nose bleeds and needs another platelet transfusion?  Her rash still looks awful and it’s now itchy? Her throat still hurts and ‘swallowing a pill feels like swallowing a big piece of steak without chewing it’?  Her legs are weaker when she walks?  There is still no sign of going home?”

How easy it was to have negativity seep in.  After 32 days I was ready for Ashtyn to feel better.  She had been faithful and deserved to go home.  With how tired I was and the situation that was before me, I could see how easy it could be to become bitter at God and lose faith.  Then a scripture came to my mind.

3 Nephi 14:9-11  “What man is there of you, who, if his son ask bread, will give him a stone? or if he ask a fish, will he give him a serpent? If ye then, being evil, know how to give good gifts unto your children, how much more shall your Father who is in heaven give good things to them that ask him?”

I love Ashtyn but God loves her more.  I want Ashtyn happy, but God’s desire for her to be happy is more.  I knew I was exhausted so with that thought I went back to sleep and slept off and on until 3 pm.

When I woke up Monday afternoon I felt much better.  All negative or bitter feelings were gone.  The word that came to my mind was “patience.”  I’ve never realized how much patience is connected to faith.  Be patient.  I can do that.  However Ashtyn was still struggling.  She was more tearful throughout the day than she ever has been.  Tearful for fear of the hospital.  Tearful because of her frustration with her body.  Tearful feeling that it wasn’t fair.  She was so sick of being in the hospital.

Again Monday night we didn’t fall asleep until around 3 am.  Our sleep is never solid but today I woke up for good at 2 pm.  Ashtyn woke up at 4 pm.  I know!!!  Our schedule is so messed up!  But we had a great positive day.  Nothing has changed.  Her WBC’s are still low.  Her ANC is still zero.  Her rash still doesn’t look good.   Her throat and mouth still hurt.  However we feel good.  She told me she is feeling more patient today.  I am not kidding!  Isn’t that amazing?  Yesterday we were both tempted to get angry that our prayers and fasting weren’t answered immediately.  We both were tempted to get bitter at God wondering why He would want her to suffer another day.  We both could have lost faith and given up.  But we didn’t.  Instead we allowed ourselves to be a bit disappointed yesterday but with faith knew God would answer everyone’s fasting and prayers and provide miracles when the time is right.

“Patience is tied very closely to faith in our Heavenly Father.  Actually, when we are unduly impatient, we are suggesting that we know what is best—better than does God. Or, at least, we are asserting that our timetable is better than His.  We can grow in faith only if we are willing to wait patiently for God’s purposes and patterns to unfold in our lives, on His timetable.” Neal A. Maxwell

“Patience is not indifference. Actually, it means caring very much but being willing, nevertheless, to submit to the Lord and to what the scriptures call the “process of time.” Neal A. Maxwell

A few weeks ago Ashtyn’s health was declining and she was almost admitted to the PICU a second time.  We asked for everyone to pray and fast that her health would improve.  After the prayers and fasting, I saw an immediate improvement.  Within a day she went from not talking to talking.  Not opening her eyes to opening her eyes, as I explained in the post, “This Kind Can Come Forth by Nothing, But by Prayer and Fasting.”  This past Sunday, after fasting and prayers, and even with your continual prayers thereafter, Ashtyn has not noticeably improved.  At first frustration was felt.  However, now I am so grateful for the lesson that Ashtyn and I are learning about patience.  I know she will need to use the skill of patience during this entire cancer process.  The first petition for fasting and prayers a few weeks ago brought an immediate miracle.  This second petition I have no doubt will bring another miracle in the timing that is right for Ashtyn.  I am excited that we get to watch as God’s plan unfolds and recognize with awe how merciful He really is in blessing us in His timing, not ours.

“Patience is a willingness, in a sense, to watch the unfolding purposes of God with a sense of wonder and awe, rather than pacing up and down within the cell of our circumstance. Put another way, too much anxious opening of the oven door and the cake falls instead of rising.” Neal A. Maxwell

Ashtyn’s Army, during this cancer battle I know your prayers are heard and will always be answered.  Sometimes the answer will be “yes.”  Sometimes the answer will be “no.”  Other times the answer will be “yes, but not right now.”  Whether the prayers are answered quickly or slowly, it matters not to me.  I know prayers will be answered according to what is best for Ashtyn.

Ashtyn and I are excited for her white blood cells to go up.  We are anxious to get home.  We will continue on with patience, being grateful for the blessings we do have.  I am grateful to be able to spend time with Ashtyn.  I am grateful I get to hold her in my arms.  I am grateful for her returned hugs.  I am grateful to be able to feel the Spirit in her room daily.  She is truly a delight to be with.

Ashtyn:  “I’m grateful that I am a little bit more sleepy and might be able to sleep better tonight.  I am grateful that you don’t have to work and can be here with me.  I am grateful for hats.  I am grateful that Chandler is my bone marrow transplant donor.  I am grateful for my siblings, dad, and extended family.  I am grateful for the time I get to be home.  I am grateful for everyone that is supporting me.  I am grateful for God because he can help me be more positive.”

Patience makes faith stronger.  We now have a new word to add to the way we are going to face this cancer trial.  We will face it with faith, trust, hope, optimism, and now patience.

24 Hour Focus

By | Looking Up, Prayers, Spiritual, Uncategorized | 12 Comments

I couldn’t say it better than Shelley.  “I can’t wait to dedicate our family’s fast for Ashtyn this Sunday so that her white blood cell count will go up and that she can go and spend time with her family, and that her rash and sores in her mouth heal quickly. I have never been so excited to look forward to a day of fasting.  Ashtyn’s Army, here is our chance to fast. I think it would be nice if we all close our fast at the same time and try to get everyone to kneel down (on Sunday) at 5:00 pm and say a prayer. There is power in numbers. Then, let’s sit back and watch as miracles happen!”

Ashtyn is in need of your prayers and fasting.  We are asking anyone who can to fast and pray Saturday into Sunday.  She is in need of three specific blessings.  1. For her rash to go away.  2. For her throat to feel better.  3. For her total white blood cell count to go up and her ANC to rise to 1000.

Please pray that her full body rash will disappear so that she is no longer itchy and uncomfortable.  Pray that her throat will heal and stop hurting so she can eat and drink without pain or difficulty.  Also, Ashtyn really needs to produce enough white blood cells to go home soon, recover further at home, and be able to go to Disneyland in a couple weeks before having to return to the hospital.  The doctors agreed that if Ashtyn’s absolute neutrophil count (ANC, the number of white blood cells that fight infection) increases to 1000, she can go to Disneyland.  Ashtyn has a ways to go.  Currently her ANC is zero.  Our hope and prayer is that Ashtyn will be able to recover from this round of chemo enough to have an ANC of at least 1000.  We would love for her to enjoy a week at home followed by four days in Disneyland before heading back to the hospital for another month of chemo.  As Shelley said, there is power in numbers.  With your faith, fasting, prayers, and positive thoughts, I expect to sit back and watch as miracles happen.

The ODells’ commented,  “Ashtyn and all the family, we are offering our prayers at daily mass (and during the day and night) for a speedy recovery and alleviation of the pain and discomfort. We keep in touch through your daily postings and marvel at the outpouring of love from “your Army.”  We love you all and look forward to the posting of you walking out that door and saying “Disneyland, here I come!”

That’s our goal.  “Disneyland, here we come!”

“There is power in unity and there is power in numbers.” – Martin Luther King

Ashtyn’s daily gratitude journal: “Today I am grateful for socks, the ability to be able to walk, comfy pajamas, nice nurses, and my mom.”

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.”

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.

Stay Positive

By | Inspirational, Prayers, Trials, Uncategorized | 7 Comments

Saturday night… I mean Sunday morning I went to bed at 6 am, after a busy night helping Ashtyn.  At 7:00 am I woke up to about 10 different medical staff surrounding Ashtyn’s bed moving very quickly.  I could sense there was worry in the air.  As I watched the organized commotion, I gathered that her blood pressure was low and they were doing all they could to get it to stabilize. 60 ml after 60 ml of fluid was pushed into her Broviac central line.  A total of 1080 ml was given to her in a matter of 10-15 minutes.  Her original blood pressure was 103/20.  The lower number (diastolic) of 20 was very concerning.  A normal diastolic pressure is around 65.  At 20, Ashtyn was unable to perfuse oxygen to her brain.  I could feel panic surfacing.  Is Ashtyn going to be OK?   Is she going to make it?  I quickly felt calm remembering what I know to be true.  God is in charge, He is watching out for her, He has a plan, and with everyone’s faith and prayers she will be OK.

By 7:30 am we placed a mask over Ashtyn’s mouth and wheeled her bed to the Pediatric ICU and placed it in a room with closed doors and no windows.  She was given norepinephrine to keep her blood pressure normal.  “Mom, I want to go back to the other room.”  Me too.  I asked the doctors what their best case scenario was of getting her back to her room.  They wanted to observe her for at least 24 hours.  Like Ashtyn, I had an immediate appreciation for her hospital room with my comfy couch bed, instead of a chair,  and all of Ashtyn’s Army decorations.  I sent a Facebook message to Ashtyn’s Army “Ashtyn’s blood pressure dropped this morning.  She was moved to the pediatric ICU for monitoring.  Please pray that the medical staff will figure out the cause.  Pray that she can recover quickly so we can return to her home away from home hospital room.”

The doctors’ and the nurse practitioner approach was that she had an infection until proven otherwise.  My approach was that she had too much morphine in her body until proven otherwise.  As I sat beside her I was so grateful for God’s hand in Ashtyn’s daily life.  At the time her low blood pressure was detected, she was getting her second unit of red blood cells transfused.  During the beginning of a transfusion blood pressure is taken every 15 minutes.  Other than a blood transfusion nurses generally take her blood pressure every 4 hours.  The PICU took blood tests and decided she didn’t need that second unit of blood.  I am grateful that her blood pressure dropped at a time that she was being monitored very closely.  Because of that blessing, I know her blood pressure wasn’t low for long and her brain was not compromised.

As the hours of monitoring went on it became apparent that she was overdosed with sedatives and pain meds. Not overdosed because of the medical staff, but overdosed because her body was unusually sensitive to what normally is given.  By 4 pm Ashtyn was stable enough to go back to her room.  Another miracle because of the prayers of Ashtyn’s Army.

Ashtyn’s day continued to be a struggle.  Since she was overdosed with medication, the staff  did not give her any medicine for nausea or pain for 12 hours to help her not be so out of it.  Because of that, she became very nauseated and threw up often, though there was nothing to throw up.  The antibiotics were also affecting her to where so had to go to the restroom a lot.  She was uncomfortable, restless, and unable to sleep well.

Her hair was a matted mess.  I asked Ashtyn if I could brush her hair.  She wanted to do it herself.  As she brushed her hair my heart sank in despair and anger for what she is going through.  Why is it that I can watch her sick and in pain, but when I see clumps of hair coming off her head, it hurts me deeply?  It makes me sick to my stomach.  She has lost so much hair, I suspect it won’t be but a few more days before it will all be gone.  I wanted to validate any feelings she may have about her hair loss.  “Ashtyn, do you know what makes me mad?  That you have to lose your hair.  It’s very sad.  Does it make you mad?”  She nodded her head, but then shook it, “I can’t think like that.”  Her comment pierced me.  She was telling me what I have been teaching her for years.  Be positive.  There is no point in ever stewing over something you have no control over.  It is so much more productive if we push out the negative and focus on the good.

Tonight Ashtyn asked me how long she gets to be home when she leaves the hospital.  I haven’t had the chance to tell her that when she goes home it won’t be for good.  She figured it out.  The girl definitely listens to conversations around her bed.  I told her she would be home for about 1 ½ weeks and in that time we can do whatever she wants to do.  “Do you want to go home or go to Disneyland.”  She thought about it, “Disneyland.”  I asked, “How long do you want to be there?”  Her reply, “As long as possible.”  I gave her the idea of going to Disneyland for 5 days and home for 5 days.  She thought that was the perfect idea.  “Do you want to go to Disneyland first or home first?”  After careful consideration she said, “I want to go to Disneyland first so that there is no way they’ll make me come back to the hospital.”  I understood.  She would have a fear the first couple of days of being home that the doctors would make her go back to the hospital early for one reason or another.  Ashtyn has always been very intuitive of knowing how to cope emotionally.

Ashtyn has been handling her hardship with such dignity and grace.  She remains nice to me and the staff even in her toughest moments.  Her determination never seems to fail.  I told her tonight, “Ashtyn, tomorrow will be a better day.”  “Mom, you told me that yesterday.”  “Well Ash, I think it will be.  Do you?”  She nodded her head.

Ashtyn Going To PICU

Ashtyn Going To PICU

I Need Thee Every Hour

By | Inspirational, Prayers, Spiritual, Uncategorized | 26 Comments

There are no words that can explain the spirit those men brought to Ashtyn’s room. There is no way I can explain the power that was there. I believe Vocal Point came to the hospital today for Ashtyn. They might have lifted other children and families as well, but they were sent for Ashtyn. I am so grateful I pushed through the thought of “I’m too tired to go to church” and went. It was a blessing that I knew Cheri and that she encouraged them to go to Ashtyn’s room at the time they did. I’m grateful that no medical staff stopped 12+ people as they walked through the locked doors and past several nurse’s stations to Ashtyn’s room. I feel watched over that Ashtyn had a nurse who was compassionate enough to recognize the benefits outweighed the risk of having so many at her bedside.

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