Recently...

Since we have been admitted to Primary Children's much has happened.  I wanted to post every night while the details were fresh in my mind, but by midnight every night the task still was not done and I needed to get to bed.  So I will summarize the last couple of days happenings.
After Evalette's admission, she was immediately started on three medications, steroids and two others with crazy fun names.  The steroids were the first step of the chemotherapy plan.  Oh fun steroids...I know the game.  Jarom has had to have them before and they have horrible side effects; extreme crankiness, irritable, increased appetite, and make you feel really uncomfortable.  Not only does Evalette get steroids, but extremely high doses.  So we were warned and told to prepare for the fun to begin.  She also was given and is still taking meds to help her uric acid levels stay low and medicine for keeping her stomach acid levels down.  The steroids will melt the mass away that is suppressing her lungs.  Go steroids, although I still don't like you.  They also break these nasty cancer white blood cells up.  This is great and all, but when the cells break up, they leak out all kinds of things that shouldn't be  in the blood stream; uric acid, calcium, potassium, phosphate, and such.  The kidneys are really good at filtering all the extra debris out, but with the immature cells breaking up, it is just too much and then we have kidney failure.  So that is where the other meds come in.  They keep her levels where they should be.
The doctors have been so impressed.  They keep telling me that Evalette looks too good to be sick.  I agree.  James and I are pretty convinced that it is because we have made sure that she has always had the best nutrition and natural care from her birth.  She is doing extremely well.  What a blessing.  Her white blood counts have steadily come down everyday and all her other levels are stable and staying where they should be.  Her body is also starting to produce red blood cells again on its own, which is wonderful.  Her white blood cells crowded out the red so they stopped growing before.  Dave, her nurse today, was so wonderful.  He went through all of her labs with me and kept telling me how amazing she is doing.  She truly is our warrior princess.  We are praying her good results will continue.  The doctors are impressed with James' and I's knowledge of the medical terminology.  With him getting his PHD in Bioimphermatics and because I recently took 2 intense classes of Anatomy for my schooling, we have been able to keep up with what the doctors are talking about.  It has been a blessing.
The plan is that we will be here for 5 weeks.  May 3rd is our projected going home date!  We will have an intense round of chemotherapy to kill all of her white blood cells.  At the end of the 5 weeks, they will do a bone aspirate and see if all the cancer is gone.  They are optimistic that it will be and if so she will be in remission!!! Then we will have 2 years of chemotherapy.  Some impatient and some outpatient.  But we won't have to stay in the hospital for another really long stay, maybe a 2 weeks or so, but not 5!   All the chemo will make sure that the cancer really gone and not coming back.  Then after 5 years, she can get the stamp of CURED!  That is what we are praying for.  She will beat this!
Today we got a road map of the first five weeks.  It will be intense and the side effects of the medications scared me.  My sweet baby will go through a lot.  It breaks my heart.  But I know that in order to save her life, we have to continue forward although I hate to see her in pain.
Generally she has been happy.  She enjoys visitors.  Her doctors love her and her sweet temperament.  She loves to laugh and dance and grind her teeth as of late.  But today was a bit more tough.  I was a bit emotional.  She would smack herself in the head, again and again.  Then look at me with her big blue eyes, silently begging me to help her because she didn't understand what was going on and why she felt so yucky.  I cried.  I couldn't help it.  After a few tears fell, I had this sudden rush of strength and I knew that we could do this.  So we rocked and rocked and rocked.  Back and forth, back and forth.  I sang to her, sweet lullabies of my childhood, primary songs, and whispered soothing words of comfort.  We both calmed down.  Now she is finally sleeping peacefully, lips in a slight pout, her hair slightly damp from exhaustion, and fingers clasped tightly around her favorite blanket.  She is safe, she is well, and she is strong.  And so am I.  We feel your love, we feel your support, we feel your prayers.  Angels are surrounding us, giving us strength and bringing us peace.  We are blessed to have such an amazing support group.  Thank you all!

Tuesday...

Moniters humming,
lights low,
murmurs of conversation outside our door,
low music singing us a lullaby,
sweet baby sleeping,  and
mommy wide awake.
Thoughts swirling through my head.
When things get quiet, is when I begin to think, pray, and ponder.
Usually I press forward with positive thoughts,
but right now, I am allowing myself to rewind back.
Back to Tuesday.
Back to that perfect day.
The sun was out.
It was a normal day.
Me making dinner,
the boys camping out in the backyard-
literally, they had their whole bedroom out there.
Evalette sleeping as she had been doing so much lately.
Daddy home helping out.
All was well.
Baby was a little sick, but happy as ever.
She was always happy.
Never cried.
Oh precious angel.
She woke up.
We all went outside.
She laughed at her brothers, being their crazy selves.
They of course loved her enthusiasm and made her laugh more.
Oh how they adore her.
And that is where I want to push the pause button.
Please someone find me a remote.
Tell me how to go back to Tuesday.
But I know that tomorrow always comes.
Tuesday couldn't stay forever.
We were supposed to move forward to Wednesday.
The day that changed our precious world forever.
We promised to fight this fight before we even came to this earth.
But knowing this sometimes doesn't make it easy.
So for tonight I will go to bed dreaming of Tuesday.
Oh that blessed day.

Piecing It Together.

As we have learned more about Evalette's diagnosis of Leukemia, we understand that we were blessed to have it diagnosed so soon.   There really aren't any signs of Leukemia per say.  It acts like a common cold or illness.  Leukemia begins in the bone marrow.  One little smarty pants white blood cell begins to do it own thing.  Soon it has overtaken the area and then because of the limited room, the "new white cells" or cancer cells are leaked out into the blood stream.  Thus the cancer spreads to the blood.  White blood cells are responsible for fighting off illness so when a person had Leukemia, their immunity is super low.  Hence the reason Evalette couldn't fight the strep, the RSV, or other colds.  When they tested her yesterday for viruses, she had RSV, strep, and rhinovirus (the common cold).  We now understand why we couldn't get the strep out of our house, she couldn't get rid of it.  She was the carrier.
The doctors have told me not to put any guilt on myself, as the cause is unknown and it can be triggered at any time.  I have tried to think back at when this might have started.  I think maybe February.  She didn't want any solid food anymore.  I just thought it was because her front teeth were pushing through.  She had a runny nose at that time too.  Don't all kids have runny noses.  I had no idea.  If only I had known.  But truthfully we did catch it early. I realize now that it was actually a blessing to have the cursed strep in our house.  It is the reason we kept taking her to the doctor. It is the reason she was finally diagnosed.  I am still in shock.  As I said on Facebook, "I keep hoping the tears will stop but everytime I see my daughter my heart breaks more, everytime I talk with my boys it breaks again, and reading everyone's words of kindness and encouragment brings a flood of tears once again. I promise we are doing well, but the tears come anyway."  
My heart is filled with peace although, I still sit here in shock. I keep thinking that I will wake up from this dream.  Someone please wake me up.

The Beginning

Our family of 6 has been fighting off strep since Nov.   We had all the regular symptoms and all got put on antibiotics just before Christmas.  In January, I took Lance, Jarom, and Evalette in for well checks. Of course they had RSV so we postponed shots until the end of Feb.  Back to the doc we went.  Once again to try to finish the well checks.  Well, although they had no signs or symptoms all were tested for strep and all were positive.  Once again, antibiotics all around.   We couldn't figure out why we still had the bacteria (and to set everyone at ease, nobody was contagious, just the bacteria was there).  On March 9th, we finished up the antibiotic, confident that all was well.
On Saturday, March 23 Evalette wasn't feeling well.  She had a low grade fever and wasn't eating much.  We spend the day at James' parents house and she just layed in grandma's arms.  I noticed that she wasn't breathing great.  She was grunting a little and holding her breath occasionally.  We watched her closely through the night and at 6 am on Sunday I took her to the Springville Instacare.  She had begun to pull and retract through her chest.  I knew something was wrong.  At the doctor's office she stated fine- oxygen was 96.  So Dr. Bowcott wasn't concerned.  I told him about the strep issues we had been having so he tested her although she really had no signs of strep. Positive of course.  He gave me a prescription for Amoxicillin and told me she was fine.  I was baffled.  I knew something wasn't right.  I took her home and we once again watched her closely.
On Monday, James had the impression to take Tyrell into a pediatric clinic in Springville.  He wanted to know if Tyrell still tested positive for strep.  He of course did.  The wonderful nurse practitioner, Debbie, told James to set up one more appointment and she would test all the rest of the family.  James felt strongly that he should set up the appointment for Evalette.  So we all went in.  Yes, positive again. So she gave us all, including James and I new antibiotic prescriptions- a very strong one.  Debbie was very concerned about Evalette.  She could tell that she was dehydrated, struggling with her breathing, and lethargic.  She decided to give Evalette a rocephrin shot, a quick shot of an a very strong antibiotic, to see if that would jumpstart her.  She was thinking of admitting her to Utah Valley right then, but decided to send us home, as long as we pushed fluids down her and we would see Debbie the next day.  James took Tuesday off.  He hydrated his baby like mad.  Every hour or more, he would get a syringe and give Evalette at least an ounce of pedialyte.  She seemed to perk up a bit and later Tuesday we took her back to the doctor.  Debbie was optimistic that she was feeling better and breathing better.  Another rocephrin shot, an appointment for wednesday to have her checked again set up, and we were out the door.  Something still nagged at me.  Something was wrong with my baby.  She acted like a virus had hit her hard, but there was something else.  I just knew it.  At 4:30 am Wednesday morning I almost took her to the ER, but I felt strongly to wait.  I prayed that all would be well and that she would be protected.  At 9:40 am we saw Debbie again.  We both decided that Evalette seemed worse.  Her breathing was unimproved and now Evalette was flaring her nostrils.  Debbie also noticed that there was something in her lower abdominal cavity- she wasn't sure at to what it was...stool?  She called in the regular doctor. He thought it was an enlarged spleen.  They decided we needed to admit her to Utah Valley hospital for testing and hydration.
I jumped in the car and went straight there.  They put her on an IV right away.  We had a chest X-ray, an abdominal ultrasound done, and blood drawn.  The ultrasound confirmed an enlarged spleen.  But it was the chest x-ray that blew us away.  There was a mass on top of her lungs and heart and fluid around her lungs.  But it wasn't pneumonia.  So we waited for the blood results to come back.
Around 3 pm on March 27th, my world changed forever.  We were told that my baby had cancer, Leukemia.  I will never forget that moment.  I hugged her tight, kissed her head, rocked her back and forth, and the tears started.  Everyone in the room cried.  Not only were we shocked, but so were the doctors.  We were told that her white blood count was at 432,000.  A normal person's white blood count is from 5000-18000 max.  They life lighted us to Primary Children's hospital.  I got to ride in the helicopter with her.  She didn't enjoy it.  She just wanted me close.  We arrived at Primary's at 6 pm.  What a long day.  We were met by a great team of doctors and nurses.  They put us in the ICU because of her critical condition.  We now have begun the process of fighting the leukemia and finding the silver lining through it all.