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Getting Back to “Normal”

By | Daily Life, Inspirational, Looking Up, Trials, Triumphs, Uncategorized | 6 Comments

The doctors came to Ashtyn’s room this morning, as they always do, to discuss the plan of the day.  What are the concerns?  How is her status?  What changes need to be made? Everyone was pleased with how well she is doing and noticed her huge improvement.  No changes were made.  Stay the course.

For eleven days the oncologists have cultured all possible blood, urine, stool, nasal, throat, and anything else they could test to determine why she got so sick.  The infectious disease department was involved to make sure she was being covered by every antibiotic, anti viral, and anti fungal medication possible.  Surgery attendings were involved monitoring her appendix.  ENT was included to rule out fungus in her sinuses.  Integrated medicine was there to provide pressure point and massage therapy.  She had physical and occupational therapy working on strength.  Dermatology took a look at her scalp for a questionable mole and will be looking at the rash she has all over her torso tomorrow.  I wish I could write a list of all the viral, bacterial, or fungal infections they have tested for.  I don’t have the list and most of them are words I’m not familiar with anyway.  Every single test has come back negative for any sign of infection. Remarkable. But not surprising.

February 13th I posted “Nowhere I’d Rather Be.”  It was the night before the doctors started doing blood work to test for infections.  In the post I wrote: The Stake President gave her a blessing.  The blessing started out sounding generic to what she was in need of… Soon though the blessing didn’t seem generic to me anymore.  His voice changed and with power he said,  “I command these infections and illnesses to leave your body.”…Of course she still has cancer.  That wasn’t what he commanded to leave.  I believe she did have an infection of some sort, and whatever infection she had was healed using the power of God.”

That blessing has come to be a tremendous help for Ashtyn.  Her body has had such a severe reaction to the chemo.  Even her healthcare team commented that her body was hit abnormally hard.  What a blessing it has been to be infection free, so her body could conserve energy to handle the effects of chemo without having to fight and deal with a bacterial, viral, or fungal infection. “In a priesthood blessing a servant of the Lord exercises the priesthood, as moved upon by the Holy Ghost, to call upon the powers of heaven for the benefit of the person being blessed.” Dallin H. Oaks

Today was a great day, by my standards.  Ashtyn is on the road to getting back to “normal.”  For over a week all she did was lay in a quiet, dark room and keep everyone busy with all that she was going through.  Today she was awake and alert for a few hours at a time.  Her naps were calm and restful.  By the end of the day her temperatures ranged from 98.7 to 100.5.  Her nausea was gone which meant there was no throwing up.  We played two games of UNO with occupational therapy while we listened to music.  She was able to talk a lot more and I was able to understand what she was saying.  When walking to the restroom and back she no longer was shaky and unsteady on her feet.  Ashtyn had energy to be a little irritated.  She doesn’t like that her mouth and throat hurt.  All she wants to do is be able to swallow her spit and a cup of cold water without excruciating pain.  Ashtyn voiced her opinions today when things weren’t where she thought they should be or when she wanted something.  When told to do things she didn’t want to do, she resisted  more.  Her irritation is a good sign to me. The outward fight is in her.  Today she didn’t do anything abnormal.  She did make me scared one time.  When getting a red blood cell transfusion, her heart rate went down to around 70.  A normal heart rate is generally 60-100 for a child her age.  Her heart rate had been high for days so when it dropped to normal I got nervous.  Her heart rate dropping to 70 just meant that her heart wasn’t having to work as hard as previously.  One thing has remained the same.  Ashtyn wants to go home.  She is on the road to getting there and I am so proud of her.

It’s very inspiring watching Ashtyn overcome hurdles.  I know she will be faced with one after another.  Rest will always follow, whether for a short moment or an extended period of time.  We will then be faced with another hurdle to learn from.  One thing we will always keep in mind, “Truly, things always work out!  Despite how difficult circumstances may look at the moment, those who have faith and move forward with a happy spirit will find that things always work out.” Gordon B. Hinckley

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

The Beginning…

By | Daily Life, Inspirational, Trials, Uncategorized | One Comment

Wednesday January 30th started with a prayer. “Heavenly Father, thou knows Ashtyn has missed school and has been sick for a couple of weeks.  She has been pale and has had very little energy.  Last night my mom called to pass on a message from my dad that he really feels Ashtyn needs to see a doctor.  You know how my dad is.  He isn’t much of a talker but when he does, he speaks with wisdom.  You know how I am.  I think she just has a flu that she still needs to recover from.  Please help her to get better or tell me what to do. In the name of Jesus Christ, Amen.”

And off we went as usual.  I drove Chandler (13 yo) to Butler Middle School at 7:40 am, picked up my adorable nieces Millie (3 yo) and Ruby (1 1/2 yo) from my sister Alisa to babysit for the day.  Went back home, fed kids breakfast, and hopped in the car at 8:30 am to take Ashtyn (12) and Morgan (10) to Canyonview Elementary.  Ethan (6), Millie, Ruby, and I went back home, got ready for the gym and headed to XCEL Fitness.  At 11:30 am I was ready to head out of the gym when I got a phone call from Canyonview Elementary School telling me that Ashtyn wasn’t feeling well and needed to be picked up.  My heart raced in a way it never has when I get a sick call from school.  My sister Jen was at my side and with a worried face I said, “I’ve got to get Ashtyn to a doctor.”  She asked, “Do you think she could have Leukemia?”  “Yes.” I answered.

When I walked in to the sick room at the school Ashtyn was laying on the bed.  After a few days of protesting a doctors visit, with tears in her eyes she said,  “Mom, I think I need to see a doctor.”  “I know sweetie.”

I got a phone call from Chandler letting me know he didn’t feel well and asked if I could pick him up from school.  “Perfect timing, I will be right there.”  By this time it was 12:10 pm.  Ethan’s school started at 12:15 pm so I dropped him off to Kindergarten at Butler Elementary. With urgency in my heart, I dropped Chandler, Millie, and Ruby to my moms and headed for the Insta-care with the knowledge that Ashtyn needed blood work done to find out if she has mono or Leukemia.

We sat in the waiting room for about an hour and once it was Ashtyn’s turn to see a doctor things started happening with no delays.  Ashtyn was truly terrified  when it took three painful needle sticks to get blood work.  The results quickly came back with a very low White Blood Cell count and low hematocrit. I called Jason to let him know we were heading to Primary Children’s Hospital.  It was 2:30 pm. Jason just so happened to be off work driving home and his dad just so happened to be 5 minutes away and headed to my house to give Ashtyn a blessing. ** I have never believed in “just so happened”.  There are constant tender mercies from God all around us everyday showing us his continual and constant hand in our lives.** I drove Ashtyn home, got her in comfy PJ’s, grabbed her favorite blanket, Justin Beiber pillow and a few other things.  Lorin, Jason’s dad, gave Ashtyn a blessing.  I don’t remember a word he said but it doesn’t matter. I know the power of the Priesthood is the power of God and blessed Ashtyn with what she needed at that time.

Once we got to Primary Children’s hospital at 3:30 pm things happened quickly.  The ER took every blood test they needed, but she was calmer with the needle sticks than she was at the insta-care.  Ashtyn: “I trust them more here.”  We first met with the NNP who talked to us about cancer.  We then talked to the Hematologist who also was leaning towards cancer.  Ashtyn was hearing about cancer when we didn’t even know she had it.  In my mind I wasn’t going to assume she had anything until tests came back.  As far as I knew, maybe she had a severe virus and yes maybe it was Leukemia, but I didn’t want to jump to any conclusions.  By 7:30 pm Ashtyn was taken to the 4th floor and given a room in the ICS Immunocompromised floor.  Ashtyn was scared. She wanted to know what was wrong with her.  She didn’t want cancer.  She didn’t want to be in the hospital.  She wanted to be in school. (“What? You never want to be in school. How perspectives change.”) She wanted to be home.  However she felt how I felt, nervous for the unknown but peace in the heart.

Once settled the visitors came and so did her smile, and even her laugh.

We will face this challenge with upbeat spirits.  There will be times for crying, anger, fear, frustration, doubt, and anxiety. There will also be times for peace, happiness, smiles, calmness, and fun.

James E. Faust, “Everybody in this life has their challenges and difficulties. That is part of our mortal test.  The reason for some of these trials cannot be readily understood except on the basis of faith and hope because there is often a larger purpose which we do not always understand. Peace comes through hope.”