Tag

Prayers

Prayer is Part of Our Routine

By | Daily Life, Round 2, Uncategorized | 7 Comments

After spending 45 out of 48 days at Primary Children’s Hospital, Ashtyn and I know the routine.  Attending, fellow, and resident doctors, nurse practitioners, registered nurses, child life specialists, anesthesiologists, pharmacists, house keepers, dietitians, physical and occupational therapists, techs, volunteers, psychologists, integrated medicine specialists, and parents of other patients are becoming familiar and conversations are developing with our new friends.  A parent of another patient went to Walmart and picked me up some Propel.  Our morning nurse woke us up with hot chocolate.  The night nurse brought us Bill Cosby comedy CD’s to listen to.  Other nurses that aren’t assigned to care for Ashtyn come in to say hi and ask if she needs anything.  These acts bring joy to my heart as everyone is taking such good care of Ashtyn.

Monday morning Ashtyn was wheeled downstairs to get the chemo drug Methotrexate injected into her cerebrospinal fluid through a lumbar puncture.  As far as Ashtyn was concerned, it was the same experience as the two bone marrow aspirates she has had.  We walked through the same doors, into the same room, a nurse asked a few questions, and the anesthesiologist introduced herself.  The child life specialist, Lindsey, automatically knows to bring Ashtyn an iPad to play Disneyland Explorer while waiting.  Once in the OR, Ashtyn laid on her right side and a mask with the watermelon smell was placed over her face.  “Mom, I need you in front of me.”  I held her hand and squatted down so my face was right in front of her face while the anesthesiologist put Propofol into her IV.  She asked, “Are you putting it in?  How long until I fall asleep?”  Before I could answer, she was asleep.  After the procedure Ashtyn was taken next door where I was invited to come in and watch her as she slowly woke up.  I offered her a slushy.  “What flavor do you want? Raspberry lemonade or Root-beer?”  Even in her drowsy state she knew, “Raspberry lemonade.”  She has had the root-beer slushy numerous times, she must have wanted to try something different.  She can’t eat 12 hours before anesthesia so as always she woke up hungry and wanted chips.  After eating a bag of chips she was ready to head back to her room.  We totally have it down to a science.

Once she got back to her room she was exhausted for the rest of the day.  She didn’t seem to feel well and started having frequent restroom visits.  Within five hours her vigilant nurse decided to test her for C-Diff.  The results came back positive.  Her blood work from the night before came back as well showing high liver enzymes.  Whenever anything unusual happens, Ashtyn’s lack of medical understanding causes her to think the worst.  Several weeks ago when she heard she had pneumonia, her first thought was that she was going to die because her over 90 year old great grandpa died of pneumonia.  When she heard her liver was struggling, her first question was, “am I going to have to have a liver transplant?”

With the news of her intestinal bacteria infection and her struggling liver, I asked people over Facebook if they would specifically pray that the effects from C-Diff would be minimal and that she would overcome it quickly.  I also asked if people would pray that her liver would recover and be able to do what it needs to do.

The next day, Tuesday, I knew from the moment Ashtyn woke up that she was feeling better.  The entire day she had absolutely no signs or symptoms of C-Diff.  She didn’t experience stomach pain or intestinal difficulties at all.  The doctor also informed us that her liver enzymes had come down significantly to almost a normal level.  Of course Ashtyn’s C-Diff, liver, and her overall day was better because of prayer.  We both know that with prayers she will be blessed.  Each day there have been tender mercies from prayers being answered.  Our burdens have been lightened daily because of the prayers of others.

 

 

Faith

By | Inspirational, Looking Up, Triumphs, Uncategorized | 9 Comments

I have always found myself looking ahead and planning for the future.  Change has never been a fear of mine.  When things don’t end up how they were envisioned, I adapt.  Naturally I look at Ashtyn’s health the same way.  I don’t know the future, though I can’t help but think about it.  It doesn’t matter what I think will happen, however I can’t help but look ahead.  What do I see for the future?  I’m preparing for Ashtyn to get a bone marrow aspirate in a few weeks that will show she didn’t go into remission with the first round of chemo.  She will then have another month of intense chemo for 10 days with 20 days hospital recovery.  We will then pray that she goes into near remission and then prepare for a bone marrow transplant in May.  I’m preparing myself for a very difficult summer with an extremely tough recovery from the bone marrow transplant.  However in August, Ashtyn and I will return home to further recover from the bone marrow transplant over nine months.  We will then enjoy a wonderful summer of 2014 and rejoice in her health.  We’ll see.

When I first heard that Ashtyn had cancer some thoughts came to my mind.  “Suzanne, this isn’t yours.  God is the orchestrator.  Hand it over to Him.”  Gladly.  I instantly handed over my daughter to God knowing He was completely aware of her and had a plan.  I was not in charge.  It was also clear that this was not about me.  I was simply a member of the orchestra with a part to play, just like everyone else.  I trusted God completely.  I had faith in His will.  I have since been surrounded by peace and comfort.

No, I am not hiding sorrow, despair, anger, or built up stress.  I have always been a “what you see is what you get” person.  When I get upset, you’ll know it.  Sure, at times I feel irritation, exhaustion, and worry about Ashtyn.  Other times I’m bummed that I won’t be able to sleep in my own bed for months or disappointed that I’m not as involved with my other kids as I’d like to be.   However, those feelings come and go quickly.  Most of the time I just feel peace.

As I observe Ashtyn, there seems to be a peace about her as well.  I can see in her countenance that she is being comforted.  She is not in bed suffering as you would think she would be.  Yes it is difficult, however she is tolerating everything with strength and calmness.  She doesn’t want anyone crying for her because she isn’t crying for herself.  She doesn’t want anyone to doubt because she doubts nothing.

Today I asked her brother Chandler (13) how he is feeling.  He said that he has felt “temperate” during this entire month.  He credits the Spirit for that feeling of comfort.  Morgan (10) has felt peace as well.  Her heart is comforted and is only concerned about Ashtyn.  I assured Morgan that Ashtyn truly isn’t suffering as much as one would think.

The word “faith” keeps coming to my mind.  Faith is the reason I am optimistic and at peace.  Faith is the reason Ashtyn has strength and comfort.  Faith is the reason why Chandler feels calm.  Faith is the reason Morgan is joyful.  Faith is why our burdens seem light and we do not fear.  Faith that we know God loves us, is aware, and has a plan.  Faith that God listens and answers prayers according to what is best for us.  Faith that God is merciful and would never allow us to suffer in vain.  Faith that Christ will lighten our burdens.  Faith in ourselves that with God we can do anything.

Faith that “All these things shall give thee experience and shall be for thy good.”   D&C  122:7

Faith that “All that we suffer and all that we endure, especially when we endure it patiently, builds up our character, purifies our hearts, expands our souls, and makes us more tender and charitable, more worthy to be called the children of God.” Orson F. Whitney

“Faith in God includes faith in His timing.”  Neal A. Maxwell

“Fear is the opposite of faith. Do not be afraid! I do not fear.” Boyd K. Packer

Faith just makes life easier and more joyful.

Ashtyn’s daily gratitude journal:  “I am grateful for cars, my house, TV, cell phone chargers, and that I live in a neighborhood close to a good children’s hospital.”

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.”

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.”

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.

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.

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

Ashtyn Going To PICU