Category

Miracle

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.

We All Have A Part To Play

By | Daily Life, Miracle, Prayers, Spiritual, Uncategorized | 28 Comments

ANC is an important medical term in cancer: Absolute neutrophil count (ANC) is a measure of the number of neutrophils, a type of white blood cell that fights against infection. A normal ANC is above 1,500 cells per microliter. An ANC less than 500 cells/µL is defined as neutropenia and significantly increases the risk of infection. The bone marrow is where all white blood cells are produced.

Looking back in time I am absolutely amazed at Ashtyn’s circumstances prior to being hospitalized. A few weeks before getting admitted to the hospital, Ashtyn did feel sick. Mostly she was just tired. Very tired. But she tried to go about her normal activities. Though she missed over a week of school, she continued going to church on Sundays, piano on Mondays, youth group on Tuesdays, and family parties. On January 19th, 1 ½ weeks before diagnosis, she felt awful but insisted on me taking her to the L.D.S Draper temple with Chandler to do baptisms for the dead. The day before going to the hospital she went to the humanitarian center with her youth group. Ashtyn also attended school the day she went to the hospital and had plans to clean a neighbor’s house the following day. She had the strength within to push through extreme fatigue to accomplish the things she wanted.

Why is this so remarkable? Several reasons. The day she went to the hospital Ashtyn’s ANC was 200. Two Hundred!!!!!! Cancer patients aren’t allowed to leave their room without a mask with an ANC that low. They aren’t allowed home until their ANC is at least 500 because of the likelihood of infection, and even then they aren’t allowed to go to school or church for fear of exposure to illness. Ashtyn came to the hospital with an extremely low white blood cell count but wasn’t sick with any “normal” illness. I have no doubt it was a complete miracle that she didn’t come in with pneumonia, the flu, or some life-threatening illness from public exposure. Her entire school was riddled with illness. Morgan was even home sick with a severe sore throat. What a blessing it was to be able to come into the hospital and be able to tackle the diagnosis of leukemia without the complications of having to battle a difficult infection. When Ashtyn was admitted to Primary Children’s they immediately put her on the immunocompromised floor to protect her from infection. She was also given 2 units of red blood cells because her hematocrit was so low.

How was she functioning at home with such low white and red blood cells? And how on earth was she not sick with an additional illness? Total Miracle.

Ashtyn has been on chemotherapy now for 9 days. Chemotherapy kills cancer cells as well as fast growing cells. This means that chemo harms cells in the bone marrow, digestive tract, and hair follicles.

It isn’t a coincidence that the day after Ashtyn visited her siblings she started feeling the effects of chemo. Chandler, Morgan, and Ethan needed the image of Ashtyn being healthy and comfortable so they could envision that through the difficult times. Today Ashtyn began showing signs of the effects the chemo is having on her body. Her ANC is 0. She has no ability to fight infection. Throughout the day I worried that she might be coming down with an infection. Her temperature was slowly rising and it just didn’t feel right. By 8 pm she was 100.5. The doctors treat for infection when her temperature reaches 101. She also had a nosebleed today due to her low platelets and had a platelet transfusion. Her mouth has become extremely sore over the last 16 hours with the start of mucositis which is also affecting the lining of her throat. It is difficult for her to swallow and is painful to eat. She drank a Slurpee and threw the entire thing back up. With all the things she is dealing with, she stayed strong today and tried so hard to stay positive. In the evening, though she wasn’t feeling very well, she addressed all her valentines for her 6th grade class. Ashtyn decorated her own Valentines Day box for school earlier this week. She worried that her classmates would forget to give her Valentines cards since she won’t be there. Ashtyn asked me to email her teacher and make sure they don’t forget her. Though I knew she wouldn’t be forgotten, I sent her teacher an email anyway.

Ashtyn Making Valentines Day Cards For Her Class

Ashtyn Making Valentines Day Cards For Her Class

Ashtyn hasn’t been losing much hair yet. She did stand in front of the mirror today and while holding her hair back, picturing herself bald, she cried. “I don’t want to lose my hair. I will be so ugly.” “Ashtyn, when you are bald you will be stunning. Everyone will be amazed at your glow and beauty. When you are told how beautiful you are, people won’t be saying it just to be nice, they will mean it. But you won’t see it. Over time I hope that you do.”

Ashtyn is currently on quite a few medications. She takes medicine at least every 2 hours throughout the day and night. She is coming to the end of taking her three different chemotherapy drugs (doxorubicin, cytarabine, and etoposide). Other drugs include “Voriconazole” a prophylactic antifungal medication, “Septra” a prophylactic antibiotic, Colace to keep her bowels moving, mouthwash to help with mucositis in the mouth, eye drops to prevent infection in the eyes. Zofran, Benadryl, Phenergan, and Ativan for nausea. Oxycodone and morphine for mouth and throat pain. I am so grateful for all the medications that play a part in helping her get better.

At 8 pm Ashtyn’s Bishop and Stake President came to visit. Before leaving they asked Ashtyn if she wanted a priesthood blessing. She accepted. They put their hands on her head and the Stake President gave her a blessing. The blessing started out sounding generic to what she was in need of. He blessed her that the doctors would be inspired to treat her properly and that she would have peace. 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.” He proceeded to bless her with the ability to tolerate everything in her future. She will feel pain and discomfort, but blessed her that she will never have more than she can bear. Afterwards I asked him what he thought when he commanded her illness to leave. He didn’t remember what he had said so didn’t know what it meant. But I knew exactly what he meant. 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. By midnight her temperature had stopped climbing and instead had come down from 100.5 to 99.5.

I believe everyone has a part to play in helping Ashtyn, and each individual’s role, whatever that may be, cannot be filled by someone else. It truly is an orchestra with all “instruments” needed. As her church leaders left I asked them if they would please keep her in mind. If they ever feel to come and visit her, to do so right away. If ever an impression comes to mind concerning Ashtyn, to please act upon it. I am asking the same from Ashtyn’s Army. If you ever feel to say a prayer, or share her story, or write a note, or send an encouraging letter, email, thought, or quote, please do so. If you are inspired to write a song, or poem, or help my family and Ashtyn in any way, I ask you to not ignore your intuitions.

Before going to bed Ashtyn had tears in her eyes and with the most sincere and tender voice she said, “Thank you mom for staying in the hospital with me. I know you’d rather be home.” “Ashtyn, there is nowhere I’d rather be than with you.” Surprised, she asked, “Really?” “Really.”
And that is the truth.

Ashtyn woke up at 2:30 am in quite a bit of pain in her mouth and throat. The only thing she could manage to say was, “Mom, can you get on facebook and tell everyone to pray for my mouth so I can eat tomorrow?” She has faith in God and in her Army. So do I.

After Another Days End

After Another Days End