Touched.

To most this letter I am posting won't mean much.  But it means the world to me.  My twin sister and I were going to massage therapy school when Evalette got diagnosed.  We only had six short months left.  I knew I had to defer.   My sweet sister was determined to defer also.  This is the letter that she wrote for the school board.  Of course they let both of us defer until further notice, but her words touched my heart.  I wanted it to be recorded in this blog so that in the future my boys and Evalette will know how much they were loved doing this hard time.  Love you dear sister.   I know that my boys are being loved while mommy is away.  Thank you from the bottom of my heart.  To everyone that has helped watch them (Shar, Jess, mom, Erica)...words can't express my gratitude.  Thank you. 

April 1, 2013

To Whom it may concern:

I am writing this letter to ask for a deferment from Massage Therapy School at the Lindon campus in Utah. I started the massage therapy program in October 2012. There are so many things I wish to explain and express in this letter.

Last week I found out that my beautiful niece, Evalette, has Leukemia and will be in Primary Childrens Hospital for a while.  It was a hard blow to take. All of my nieces and nephews are extremely special to me. My nieces’ mom is my best friend, twin sister, Danielle. Danielle and I are extremely close. We both have 4 children under the age of six.  Our lives are crazy but we love it. We are together everyday, have put our children in a lot of the same activities and schools, and are each others strength. We take turns watching each others children while the other mom volunteers in classrooms, picks up kids, or goes to doctors appointments. We knew that going to school would not be easy but that together we could make it work.

Danielle and I are in the same class. It has not been easy making sure that our children are taken care of before school. We have worked together to take care of our families, make it to school on time, and excel in school. Danielle is the reason why I started the massage therapy program. Many nights our husbands would take turns watching our children while the other husband had to work late.

I am grateful that I get the opportunity to help out Danielle’s family by watching her children for her while she is in the hospital and her husband is working and going to school.  I need to defer because I will have a lot on my plate watching 7 children under the age of 6. The oldest children have half a day kindergarten and need to be dropped of and picked up after school. The 5 and 4 year old have preschool right before the kindergarteners and need to be dropped off and picked up from school as well. Three of the children have piano during the week. One goes to soccer.  Jarom, Danielles, second child, has many allergies and a skin condition. He has a specific diet and many things that need to be done to help his skin everyday. As you can see I will not have the time or energy to put the dedication that I need to into school right now. My number one concern right now is to care for my nephews and help them feel secure and loved. I want their life to stay as normal as possible as their little sister and mother are away. I also need to be that emotional support for Danielle and to be there when ever she needs me to be. I plan on staying and helping her at the hospital when I can and when my husband can watch the other children.  I will not have the time to make it to school, be ready to go to school at night, study, or concentrate on my school tasks. Danielles husband will have school classes so he will be home late and my husband will be coming home after 9 pm so he can be home to help in the morning with all of the children. I hope you understand my need to be accepted for deferment. I started school with Danielle and want to be there to keep her going when she starts school again. It won’t be easy for her and I am sure there will be many emotional breakdowns, as she has to leave her baby every night. But we started this journey together and will finish strong and triumphant. Thank you for taking the time to review this.

Sincerely,

Alise Kelley

POSITIVE!

When Evalette was first diagnosed, they told us to plan on five weeks in the hospital.  Then home for a couple of days and then most of the next 10 months inpatient in the hospital.  Then the rest of the 2 year duration, outpatient at Primary's.  They told me to plan on Evalette struggling with chemo, with the steroid side effects, and getting many infections.  Although, they warned me and told me not to plan on going home for a long time, I couldn't help but feel like my little girl would prove them wrong.  And so far she has.
She has met every mark they have wanted her to meet and hasn't had any of the nasty infections that they have anticipated her having.  My WARRIOR PRINCESS, I tell you.  My little fighter.  My rockstar little girl.  Since her diagnosis I have tried projecting positive thoughts and vibes.  I only want positive energy to fill her little hospital room.  So usually when the doctors come to talk to us, I have us step out of her room.  Why put negative thoughts or thoughts of anticipating bad things that could happen into my little girls head.  She is a rockstar.  Her body is strong.  She will fight.  That is what she knows.  She needs to know nothing else.
Today, Dr. Afify (cute older Egyptian doctor)  dropped in to talk with us, Evalette and I.  She adores Evalette and calls her "beautiful girl".  We discussed how well Evalette is doing and "how boring we are".  I have decided I like boring.  Never in my life have I liked or wanted boring, but right now I LOVE BORING.  She mentioned to me that "if nothing happens" then we could probably go home possibly this weekend or next week; earlier than the five weeks initially planned.  I just about jumped up and down.  But I refrained.  "She is doing very well," Dr. Afify said.  Dr. Afify is very anticlimactic.  I was so happy.  I said a couple of things like, "We like boring!", "Every thing is great!" and such.  I don't really remember.  As Dr. Afify waved goodbye, she said, "You are amazing.  You are just so positive."  I must have looked shocked.  Because she went on, "You don't even know it.  It is just who you are.  You two girls are amazing!"  I told her it is far better to be happy for life is good and all is well.  And even if we were having a big bump in the road, we will push over the bump and move forward.  I choose to be happy despite the chaos threatening to beat us down right now.
So I plan on sending good energy and positive vibes that we will be home this weekend.  Evalette's daily chemo ends tomorrow.  She has ERWINA shots, IT therapy, and some VISCERSINE on thursdays and mondays, but those can be outpatient here at Primarys.  We would be traveling up here, but we would be home the rest of the time.  So if all is well and the anticipated fevers and infections don't happen by this weekend (which they won't) I am sure they will send us home.  Evalette's white blood count and ANC counts are super low, almost 0 actually, which does mean that her body has no way to fight off infection, but by God's miracles and through all your prayers she is fighting them still somehow.  Being home will be so good for her and our family.  Even if it is only two weeks home and then mostly in the hospital next month, we will take it.  Send positive vibes our way...no infections and homeward bound!!!

Rainbows on Cloudy Days (and the beginning)...

I trust in God that he will help us see the silver lining in it all. As I praise the God Almighty, I see the rainbow on a cloudy and storm filled day...

Even though we may be going back and forth to Salt Lake City a lot, the kids were able to go and see the beehive house this weekend. They really enjoyed looking around, exploring and learning a little history (even though they didn't know it). We went shopping and bought the kids some new clothes. We also got to stay in a 'hotel' and they had fun. At the hospital, the kids went to the forever young zone - which is awesome! They got to play foosball, make and destroy pinatas (with playdough inside), paint pillow cases, do color sand art, and all kinds of other fun-filled activities!

Thank you to all those who have done anything to help, bless, support, or encourage our family and other families with children at Primary's - may God bless you.

How it all began (from Daddy's perspective) On Saturday March 23, 2013
At first, when it all began, Evalette on Saturday night she seemed a little tired. She was just a little sick with perhaps a virus that would soon pass. I had seen it before in our boys. They had been tired and fatigued from fighting a sickness which soon would pass. That is what I assumed... This time was different!

Danielle took her to the hospital on Sunday morning because she seemed to have a little bit of labored or fast breathing. The doctor sent her home with an anti-biotic as usual. He did test her positive for strep.

On Monday while I was at work, I felt like I should take Tyrell to the doctor on my way home from work in the afternoon. I wanted to know if Tyrell still had strep throat again after finishing his antibiotic a week ago. I found a good review of a doctor near his school and we went. I didn't ever want to take the kids to the doctor nor had I thought of it while I was at work, but this time I felt it was necessary. He was the only one in the family that took amoxicillin and I took him in thinking that perhaps he was the 'carrier' because this strain of strep was resistant to amoxicillin. Our family had tested positive now for the third time in a few months - crazy! He already had strep again - how is this possible? He must be the carrier. I wanted to see if all of the other kids had it too and the doctor said we could bring them all in and test the rest. We did = all positive. Crazy! This time they put me on antibiotics too even though my full throat culture came back negative for strep. The whole family was on antibiotics just like before including me.

The doctor told me that I needed to setup another appointment to test the other kids. We now only needed to test Jarom and Lance, but I felt like I should set the appointment up for Evalette. Danielle brought the rest of the kids and met us at the doctors. Day two - doctor Two. On Monday, Evalette still seemed fatigued. The doctor gave her an antibiotic shot and said she wanted to see her tomorrow.

Day Three - we went again to the second doctor on Tuesday. She gave her another shot and said she wanted to see her again tomorrow. She told us to give her pedialite every hour or she would have to admit her to the hospital. I stayed home from work and gave her pedialite a lot. She was gagging on it - it was so sad that I had to force it down her, but I didn't want my little girl to have to go to the hospital.
After the two doctors for three days, I just wanted to call it quits and take care of her at home. I remember feeling the thoughts, "You can let her die here at home, or you can take her to the doctor again." I hated going to the doctor.

Day Four - Doctor Three - March 27, 2013 We went again on Wednesday to the 2nd doctor. This time, the doctor felt something in her abdomen and had another 3rd doctor come and look at her. He said that it felt like her spleen was enlarged and that she needed to be admitted to the hospital. Danielle called me and I said ok. I asked if Alise could watch the kids so that I could be there if possible. She so kindly cancelled her eye appointment and watched the boys.

After several hours and several tests. They said that she had a mass in her chest, RSV and rhino virus (the common cold). The mass they said looks like it could be a large tumor benign or cancerous. They got the blood test back and said that she had Leukemia and her chance of survival was very, very low at this point. Her white blood cell count was so high at 423,000 instead of the normal of 5000-15,000. I cried so much - we all cried. They basically told us that our daughter was going to die and had very little chance of hope.

They life-flighted her in a helicopter to Primary Children's hospital. One lady that was supposed to be on the flight, gave up her seat so that Danielle could go with Evalette. I wanted to go too, but only one of us could and I of course wanted Danielle to be with her.

I drove to the hospital from Provo, which seemed like forever. Then, at Primary Children's they told us that they needed to run some more tests and that she may not have Leukemia. It started all over again…

Finally (not sure after how long), they told us she has acute T-cell ALL Leukemia. Danielle and I slept on a twin bed together in the waiting rooms - they gave us a room. We stayed there for a few nights as each day gave us more answers and more specifics on what she had and survival rates.

Looking back on it all, I am grateful for the doctors that were diligent in having us return and for the doctors that figured out what she has. Thank you for figuring it out. Thank you to all of those who have done research and found cures for Leukemia. I am grateful to all those who have helped - Thank you!
To Seeing Rainbows on a Cloudy Day...

PARTY!

Lots of people ask

"How are the boys doing".

They are actually doing well.

The first week or so was rough.

They didn't understand.

One morning, she went to the doctor 

and they went to school,

and then she didn't come home.

Where did she go?

It was hard because they couldn't see her.

But this week visiting restrictions were lifted

and this weekend we partied in her hospital room.

They were so happy to see her.

And she was so happy to see them.

They wore masks to protect her and

they thought it was fun.

James and the boys spent the weekend 

at the Ronald McDonald House and 

were only 5 minutes down the road 

from Evalette and I.

We enjoyed our first weekend together in weeks.

This is the start of our "new normal".

Weekend parties at the Ronald McDonald House!!

"From the Shadows Into the Glorious Sunshine"

I love this title.  I love sunshine.  I love light.  It is the title of the Relief Society lesson for today.
A sweet sister in my ward taught the lesson in our ward today.  She asked me to write down my thoughts on how my faith was being strengthened through our current trial.  I feel blessed to have this opportunity.  It was just what I needed.  Thank you Kelli.  When I begin to waiver and get discouraged...remind me to reread this.

My thoughts:

Dear Sisters-

I feel blessed to have the opportunity to write down a few of my feelings in regards to how my faith is being strengthened during this difficult time for our family.  Truly God is good, he is merciful, he is our ever loving Father.  I know that more now than ever.  

At the very end of March, our beautiful 11 month old daughter, Evalette, was diagnosed with cancer.  We were shocked...how could this be?  She was so pure, so innocent, so young. For the first couple of days I wondered, "Why her, why not me?  Why my sweet baby?"  I felt so torn between being with her and being at home with our other three young boys.  It seemed so unfair.  How could I do it all?  I remember praying that first night in the Intensive Care Unit at Primary's Children Hospital.    Around me the monitors hummed softly, there were murmurs of conversation outside our door, my sweet baby was finally sleeping and was hooked up to a bunch of machines that she needed to keep her alive, and I was trying to process it all.  I began to cry, sob actually.  My heart just couldn't bear it all. It was then that I knew I needed to pray.  So I did.  I prayed and I prayed.  I prayed until I had no more tears.  I prayed until I no longer felt despair.  I prayed until I couldn't deny that things were exactly as they should be.  I was filled with peace and I knew that God was in charge and taking care of us.  I couldn't deny what I felt.  We knew before we came here to earth that we were coming here to grow, to have trials, to become more like God.  I believe that we rejoiced and that we wanted to come to further our growth and likeliness to our Father.  My daughter knew what she was coming here to do and she agreed to do it.  And I agreed to be her strength and to help her when she couldn't do it alone.  There is no use fighting, screaming, or trying to run away.  Instead it would be much better to have faith, get ready to fight, and move forward, understanding that God has our best interests in mind.  He truly does.  So why not leave it all in his hands...he can do it so much better than I.  

And even though it is hard to see my baby in pain, to see her little body going through so much, and to see her struggling to understand what is going on...I know that she is also being strengthened and that she is never alone.  Through so many people's prayers, through angels surrounding her, through her mother's strength and care, and through her Heavenly Father's love she is being watched over and lifted up.  I am reminded of this daily.  From faith, miracles big and small happen.  Our Heavenly Father is ever mindful.        

My dad sent me an email the other day and reminded me to have faith.  He said, "Another danger is despair.  As Marilla stated in Anne of Green Gables "to despair is to turn your back on God".  Once we allow the grip of despair to take hold, we start to fear and lose hope.  Remember this, "Fear knocked on at the door and Faith answer and no one was there."  This defines the opposite of despair, answer the door with hope and faith and you will be able to fight the darkness".  Darkness and despair are not of God.  I know that no matter how dark our trials seem, if we truly desire and have faith that doors will be opened, and light will shine in.  Then we can move forward through the darkness and back into the light. 

I know that God loves me.  He loves my daughter.  He loves my family. He loves all of us. He gives us trials so that we may become more like him.  So that we can have a greater understanding of faith, compassion, love, and all that is good.  

So as we fight this battle, as my little family goes through this "trial" or experience is what I actually would rather call it, I choose to see the light instead of the darkness. I choose to have faith instead of despair.  And I choose to praise God even when it doesn't seem fair.  For he knows so much more than I.  And then just as President Lorenzo Snow states, "Every man and woman who serves the Lord, no matter how faithful they may be, have their dark hours; but if they have lived faithfully, light will burst upon them and relief will be furnished."  And it will and for us it has. Truly we are blessed.  

Danielle  

Growing....

The first week or so of this "experience" was hard.
I felt lost.
I felt alone.
I felt displaced.
I didn't fit in "here".
I didn't fit in "there".
I just didn't fit in anyway anymore
and now I am just sounding like Dr. Seuss.
But seriously I felt lost.
I was new to the hospital,
cancer child,
parent thing.
I didn't know what to say.
I just tried to blend in and
not to talk to anyone.
But then, even though I hated it "here"
at the hospital,
I didn't feel like I could go home.
I most certainly didn't fit in "there" anymore.
I was different now.
My life was changed.
How could I ever explain?
Like I said,
It was hard.
Then one day, someone talked to me.
They explained their story.
They embraced me.
They made me feel welcome.
They understood.
And I wanted to be apart.
So I ventured out of my self induced shell.
I started talking to parents.
I felt renewed,
I felt support,
I felt like I belonged.
I began to understand that I didn't need to fit in
"here"
or "there"
but instead that I fit in both places.
I was growing, expanding,
and opening myself to a whole new world.
It was now apart of my previous world.
They could exist together.
I am grateful to have opportunity to expand my world.
To meet so many wonderful new people.
It doesn't mean I have to leave my old acquaintances behind,
but I have opened the door for new ones to enter also.
So on Tuesday,
I called up James.
He drove up to Primary's and switched me off.
I went home.
I surprised my boys.
I put them to bed,
read them scriptures,
sang them songs, and
kissed their sweet heads.
It was good to go home.
Thanks for being understanding while I hid.
I am back.
Stronger and ready to fight.
I love you all!

HATS!

I am trying to convince her that hats are awesome...
they stay on her head for a total of 3 seconds...
we are working on it!