WELCOME TO HOLLAND!

Our last long stay in the hospital was a rough one.  It was hard to be there.  The hospital was depressing, Evalette was sick, and I was missing home and our life as it once was.  Many of you reached out to us.  Thank you.  I remember praying for deeper understanding, for strength, and for a renewed brightness of hope.  The next day, I met a woman.  She had noticed James and I with our four children and one on the way in the Kids Zone.  She introduced herself and explained that we reminded her of her and her family 2 years ago when their journey started.  We talked and learned that she was from the area as I had grown up at.  Her kindness and friendship filled my heart with peace and she left me this poem.  She just seemed to know without me saying much what I was going through.  Thank you dear friend from the bottom of my heart.  I am happy to be in Holland, even if Italy never comes!  I am learning to enjoy the tulips, windmills, and other wonderful things along the way.  Happy Holidays Everyone.  

WELCOME TO HOLLAND

by
Emily Perl Kingsley.

c1987 by Emily Perl Kingsley. All rights reserved
I am often asked to describe the experience of raising a child with a disability - to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this......
When you're going to have a baby, it's like planning a fabulous vacation trip - to Italy. You buy a bunch of guide books and make your wonderful plans. The Coliseum. The Michelangelo David. The gondolas in Venice. You may learn some handy phrases in Italian. It's all very exciting.
After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."
"Holland?!?" you say. "What do you mean Holland?? I signed up for Italy! I'm supposed to be in Italy. All my life I've dreamed of going to Italy."
But there's been a change in the flight plan. They've landed in Holland and there you must stay.
The important thing is that they haven't taken you to a horrible, disgusting, filthy place, full of pestilence, famine and disease. It's just a different place.
So you must go out and buy new guide books. And you must learn a whole new language. And you will meet a whole new group of people you would never have met.
It's just a different place. It's slower-paced than Italy, less flashy than Italy. But after you've been there for a while and you catch your breath, you look around.... and you begin to notice that Holland has windmills....and Holland has tulips. Holland even has Rembrandts.
But everyone you know is busy coming and going from Italy... and they're all bragging about what a wonderful time they had there. And for the rest of your life, you will say "Yes, that's where I was supposed to go. That's what I had planned."
And the pain of that will never, ever, ever, ever go away... because the loss of that dream is a very very significant loss.
But... if you spend your life mourning the fact that you didn't get to Italy, you may never be free to enjoy the very special, the very lovely things ... about Holland.

ENOUGH...

This past weekend, I packed up Evalette's old baby clothes.
It was hard.
I cried.
A lot.
Many emotions and feelings surfaced with each shirt,
with each pair of pants,
with each outfit I had lovingly dressed her in.
I knew that I would never use those clothes again.
This little boy that is coming soon is our last.
Evalette will be our only girl.
I had desperately wanted another girl.
What if God had other plans for my only girl…
I thought I needed another one to buffer my fears of loss.
GUILT.
UGH.  It hit me like a stone.
I should be happy to have this little, special boy.
I need him.
His sister needs him.
Our family needs him.
Little Enoch, I love you, but a little boy had just caught me by surprise.
A little girl was supposed to come to make up for what we had lost...
It seemed liked Evalette's baby hood had come and gone so quickly,
much spent in the hospital or with her sick for months before her diagnosis.
I had waited years for my baby girl to come to my family.
I knew she would.
Yet, I had been robbed of just her being my baby.
Cancer had stolen it away.
So I had had to share her with the doctors,
with the hospital,
with nasty chemo drugs,
and now it was gone.
It wasn't what I had planned,
it wasn't what I had wanted,
it wasn't what I had expected.
But life never is.
I had dreamed of life with my baby girl since I was a little girl.
And this wasn't the story…
this was a horrible version.
It felt good to let the emotions out.
To let the fears be released.
To let the unknown go
and realize that the time that I had had with her, my only baby girl,
and that whatever time I am given with her is enough.
For no matter what she is mine.
So whether I use the 2T clothes,
dress her in bows, frilly dresses, and leggings and
Whether I help her get used to braces,
get pedicures together,
teach her to read and write,
wave to her on her first day of school,
cry with her when she get her first pimple,
teach her what it means to be a woman,
listen to her stories of boys,
help find her dress for her first prom,
sit next to her as she learns to drive,
and watch her as she marries the man she loves.
No matter what she is mine.
Those things of this earth are great and all, but
whether or not they happen,
one thing is for sure, her and I are together forever.
So my one and only baby girl,
you are enough no matter what.
I will cherish our time together here on earth, whether short or long,
may it be long.
So I packed away the clothes.
Said goodbye to another girl.
And welcomed back in the baby boy clothes.
Boys we know how to do!!!
And there is something special about 4 momma's boys.
They are apart of me just as much as their sister.
Thank you Father for giving me so many wonderful children.
Tyrell, Jarom, Lance, Evalette, and Enoch
your mom loves you.
Truly you are my greatest blessings!!!

November Clinic

Evalette had an appointment with Dr. Wright in Salt Lake on the 22nd of Nov.  Her CBC looked great!! Still in remission.  Dr. Wright wants her to gain weight…we have been trying.  She did gain 2 ounces!!! Evalette's appetite has increased a ton and she is eating more so hopefully we can get her to 20 pounds soon.  She is 18.3 lbs and not on the charts for weight and 29.92 inches which puts her in the 4%tile for height.  I thought she was tall for her age, but I guess I am wrong.  The doctors are happy with her progress and so are we!!!  

FALL FUN!!

We got family pictures with my family in October.  Of course, I just happen to be pregnant.  But what can you do?  I think the pictures turned out great.  I made sure to get some of Evalette as she missed her year pictures.  It was cold out, but we all lived!

THANKFUL...

I can't let another day go by without saying all the many things I am thankful for.
Now where do I start….
1. My family- We were all together for thanksgiving.  8 months ago, I wasn't sure that was possible.  For the holidays it seemed doomed that we would be apart, but because of miracles and blessings, we were together.  Healthy and together.
2. Modern Medicine- because of quick intervention, good doctors, and advanced medicine, my daughter is alive today.
3. REMISSION- My daughter is cancer-free.  Things are still unknown about the future, but for today, she is healthy, pure, and well.
4. My Heavenly Father and Jesus Christ- through them, I find peace.  Through them comes miracles and blessings.  From them, I understand love, peace, forgiveness, and that all is well.  They are my rocks.
5. Wonderful friends and extended family- Because of you all, we made it through the last couple of months.  Truly you will never know how grateful we truly are!!
6. For everything because this world is just a beautiful place!!!!

For thanksgiving we went up to a cabin we rented in Bear Lake.  The weather was perfect, the entire family was there, and we had four wonderful days away.  We played games, had a murder mystery, did white elephants gifts, visited Paris, Idaho, and just relaxed.  What a great time.  Evalette enjoyed getting away…and so did I!!!

HAIR!

I am excited say that Evalette's hair is finally growing back.

Now that she is off high dose chemo, her hair is coming back in!

It is dark and gorgeous!!

She was beautiful bald, but I can't wait to have her hair back.

Her eyelashes are coming back in- dark, long, and thick.

I love her dark head!!!

She modeled for me today.

She wanted to get dressed in her fluffy skirt and favorite black shoes.

She kept saying, "Pretty!"

I adore her.

And I adore that she loves to dress up just as much as me!!

Yeah for hair!!!

*Thanks Aunt Anita and Nikki for her princess skirt

*Thanks Krystle for her outfit underneath…I think she looks amazing in that bright yellow. It matches her sparkly, bright personality!!!

So Loved...

Wednesdays are the days that Tyrell and Jarom go off to a charter school.
They enjoy a variety of subjects and activities; tumbling, spanish, art, music theater, karate, and more.
The rest of the week, they are home schooled.
It is a schedule that we all love.
I love having my boys around the majority of the time;
teaching them,
spending time with them,
doing fun things that I would miss out on if they were in public school full time.
But Wednesdays, are good for us too.
Free time for us all.
As I kissed my Jarom boys cheeks today, early this morning right before school
and whispered some goodbye words in his little ear,
his arms came around me.
"Oh mom, but I will miss Evalette so much!"
What?
That was not the response I was expecting…no missing momma?
These boys adore their sister.
Seriously.
This little girl is one adored and loved girl.
Tyrell gives her kisses all day long.
Jarom snuggles her and gets her everything she needs.
And Lance runs around, saying, "Gaga Rose".
He has called her, "Gaga" since the day she was born;
even though he can say her real name.
Now it has become some sort of nickname that we use…Gaga.
Our sweet loved little girl.
Not to mention that she has her daddy wrapped around her finger.

Miss Gaga Rose, we adore you.
Just wanted you to know that you are more than loved!!!

In Answer...

Our Miss Evalette is doing great. 

We had clinic on Friday the 26th.

Her labs look great.

Her counts are up.

But immune system is still not up to par.

Not a surprise after months and months of hard chemo.

All to be expected.

She is still cancer-free!!!

She was a champ and was a sweetheart.

She napped in my arms during our wait.

I was in heaven.

My baby is growing way too fast.

I haven't had a chance to rock her to sleep 

since our last stay at the hospital.

The doctors are happy with how things are going.

Not going to lie, I have some things I am bursting to share.

But feel hesitant to do so.

These experiences, these feelings are so close to my heart.

But I feel compelled to share. 

Just not sure how yet.

We made some big decisions with God as our guide.

On Friday, the 26th, it was all finalized.

Feeling confident, grateful, and happy about that.

I will share soon as this blog was created to share 

stories of miracles, God's never ending love, and the journey of our family's experience with cancer.

But until I can get it on record

know that our warrior princess is fighting still.

She is healthy and well.

She is whole.

Thank you for all your continued prayers.

She feels them.

I feel them.

And they are answered.

Much Love!!

Happy Halloween!

These kiddos bring me such joy.
Each one unique.
Each one a very special part of our family.
My life wonderful because you are all in it…

CELEBRATING TODAY...

Dear Baby Girl-
Maybe I shouldn't call you that…
you are growing like a weed before my eyes.
It hurts my heart, but at the same time it bursts with joy
as I watch you taking in the world around you in a whole new way.
Almost 19 months old.
Crazy how time flies.
This month you would have started nursery.
But instead, you stay home on Sunday
while Mommy and Daddy do this crazy switch thing.
Someday, we will go to church as a family again.
You are such a well-mannered child.
Still a bit shy, but slowly you are opening up to others around you again.
Your personality is beginning to shine again and you make everyone around you smile.
You love to talk, and talk, and talk.
You can say so many words and enjoy making up your own.
Animal sounds are your favorite- dog, duck, and monkey especially.
You are simply wonderful.
And so easy to love.
You give me kisses, all over my face.
Give me a hug and pat my back.
Call my name and hold out your arms.
Our bond is special, but you love your daddy just as much too.
You are our snuggle bug.
Oh sweet girl, we love you.

What I really wanted to write about…
but got carried away was about today.
You took your first step today.
A miracle no less.
Seriously.
I thought you would never walk.
It has been a long journey.
I have tried to be patient, but ok I will admit this momma wasn't blessed with that gift.
We have worked and worked with you, but you refuse.
Crawling is your game.
It is less dangerous,
not so scary, and
comfortable.
I don't blame you, but didn't want you to be held back.
So today I prayed and I prayed hard.
"Father", I said.
"Evalette needs to walk.  Alright maybe she could crawl forever, but
I need her to walk. This pregnant belly is only growing
and I am getting tired of carrying two babies."
"I know that angels can surround her and help give her the confidence to
take her first steps and I know she will run from there. Amen."
I continued to pray in my heart all day.
Afternoon came and I told the boys, it was walking day.
They all gathered around and I placed you by the couch.
You leaned against it.  You were protesting.
"Come on…" I coaxed with a candy in hand, just over arms length away.
"Ready, SET, GO!"
You laughed in my face, sat down, and reached out your arms for me.
"Come on you can do it!" We all chanted
and you know what you did, you stood up right there in the middle of the floor.
All by yourself.
You wobbled, then steadied yourself, and stood hands free for a minute.
We all clapped, screamed, and cheered.
You were so happy.
"Come to momma, " I called.
"Come on!!"
Then you did it.
One wobbly step and you fell.
"See it wasn't so bad, get back up."
"Try it again.  Momma has your treat!"
You got up again.
I admit I was shocked and thanked the angels holding your hands.
You had never been this confident.
A couple wobbly steps and then a little fall.
You were so proud and loved all the attention of the family.
I was so happy.
God hears our prayers little, small, and even inpatient ones of a very pregnant mother.
You are still working out the kinks of your walk, but everyday you stand and take steps.
You no longer fear the unknown of the fall and you enjoy your new skills.
Celebrating you and God today BABY GIRL.
Keeping on Walking!!!

A NUTTY Story...

I thought we were home free…no more scheduled hospital stays.
No more rock hard couches to sleep on, no more monitors,
no more endless nurses and doctors, no more sterile surroundings, and
no more ridiculous hospital bills to pay.
Well during the month of October it wasn't so.
Except it wasn't Evalette, but Lance who decided
he was feeling a bit left out.
Let the story begin.
Rewind to Sunday, October 13th.
It was a quiet Sunday, after dinner, we were hanging out.
Tyrell had to have a snack, he was hungry.
And he loves nuts so he got the nut bucket out.
Lance asked for one, so Tyrell gave him a few.
I sat across from them, feeling lucky to have such good boys.
Then Lance choked or so I thought.
James and I both flew into action.
After we assessed the situation and Lance seriously coughed up a lung for a couple of minutes,
he was fine.
I was pretty sure he had aspirated the nut as the choking signs hadn't been there.
And he was wheezing a bit after the coughing stopped.
We looked it up on the internet.
It should pass on its own in about 5 days or so.
If a fever appears, go to the doctor.
So we decided to keep a close eye on him.
We didn't want to jump to conclusions.
We had been to the doctor's way too much lately.
Monday, he was fine, a bit wheezy but fine.
Tuesday night, he was a bit hot, but Jarom had been sick the weekend before…
maybe that was it.
So we watched him, by morning the fever had broke and he was fine.
Well, Wednesday at 4 pm,
he was lying on the couch, super lethargic, and running a high fever.
Daddy got home and mommy sent them off to the ER,
since no clinics had the X-ray stuff we knew they would need.
Sure enough.
An aspirated nut, causing pneumonia in his right lung.
UGH!!
So the doctor lectured us on the dangers of nuts, popcorn, and small candies for kinds under five,
did a scope, removed the cashew from his lung, and told us we had to stay the night for observation.
Lance was a champ through it all.
Seriously he had all the nurses wrapped around his little finger.
Everyone kept telling me what a ladies man he would be.
One nurse even said, he was simply the cutest kid that they had worked with in a very long time.
Lancee Boy, you are a charmer.
Gotta love his long eyelashes, dimple, and handsome smile.
They gave him tons of stuff because he was so good while they poked him
seriously 10 times to get the needle in.
A mickey, a dog, a car, blankets, and stuff.
He felt pretty special.
My favorite part was right after they gave him sleepy medicine…
he was talking about bananas and laughing his head off.
It was hilarious.
He is our banana boy!Daddy stayed the night with him,
I went home to send Alise home.
She had stayed with the boys while I rushed to the hospital.
Thursday morning, Lance came home.
Happy and chirper with no sign of the previous nights happenings.
Glad he is ok.
Grateful to have him home.
Please November, let us stay home!!!

Soaking It All IN!

carpet. 
bare feet. 
soft towels.
a stove. 
a fridge. 
Comfy couch.
my own bed. 
cooking. 
cleaning. 
evening walks and bike rides.
homework.
field trips.
giving children baths.
combing wet hair. 
tucking ALL my babies into bed at night.
my husband.
my family.
it really is about the little things.
sorry if this blog has been a little quiet lately, 
i am soaking in my life.
it is wonderful to be home.
We are now doing monthly clinic visits.
Feeling blessed.
Feeling grateful.
Loving the wonderfulness of it all!
Will update soon!

Some. Quick. Thoughts.

Life is busy.
Holidays are around the corner.
Birthdays galore.
School started (homeschool 4 days a week and charter school one day).
Digging out the fall/winter clothes.
Putting away summer ones.
Getting ready to potty train a certain 2 1/2 year old.
Teaching the 18 month old to walk.
Serving in the ward primary just got crazy...
Primary program is coming up way too fast!
Many nurses' visits.
A trip to the hospital for a check up, EKG, an Echo, and a bone marrow aspirate.
Results in a week.
Many meetings with Evalette's doctors.
Still deciding on next course of action.
We should have a plan next week.
Praying for guidance in our decision.
Life is busy.
But oh so fulfilling.
Can I just say it is good to be home!
Oh did I mention...
we had an ultrasound in there somewhere.
We were very surprised to hear...
IT IS A BOY!
He certainly wasn't hiding it.  
We of course are thrilled, but were a bit shocked 
as we were certain it was a girl. 
But we certainly know how to do boys.
Our little boy already has a name (Enoch Joseph).
We have loved the name since after we had Tyrell, 
but have been waiting for the right time to use it. 
It holds very special meaning to us.
We can't wait to meet him soon...
Love you to the moon and back little baby.

FULL. HEART.

Tonight my heart is full.
We are home.
Tyrell's birthday is on Monday.
His wish came true.
Evalette and I are home for his birthday.
So happy that he got his wish.
As I drove past my house earlier tonight, on my way to run errands,
to prepare for a family birthday party tomorrow,
I couldn't help but smile.
Three crazy boys, dressed as a snowman,
spiderman, and a transformer/cowboy caught my eye
as they bounced happily away on the trampoline.
Then a little girl with a huge smile on her face jumping with her daddy,
watching her brothers brought tears to my eyes.
How blessed am I.
This is all I need.
This is all I want.
To be with my family.
And no matter what happens,
we get that promise of being together FOREVER.
Although we are in the process of making some big decisions
concerning Evalette's care and treatment,
we know we are being guided from on HIGH.
We cannot deny God's hand in our lives.
And we stand in awe at the many miracles he has wrought on our family's behalf.
We are praying for Evalette's doctor to have an open heart.
We are praying to know what to say and how to discuss our concerns when we met
with her doctor.
We are praying that it will be as it should, as God desires it.
But we are moving forward, knowing and being guided as to what is best for our daughter.
But with all that being said...
tonight, once again,
my heart is full.
FAMILIES ARE FOREVER
and my little family is simply wonderful!

Inpatient...

After a week break of being home, we were readmitted to finish the phase.  Her diaper rash cleared up, her counts were up, and her temperature was normal.  Back to our home on the hill.  Today has been 10 days since we got here.  The first five days were filled with chemo- 7 hours a day.  Evalette handled the chemo like a champ, with the help of our constant friend, Zofran.  Her appetite stayed the same and she surprised the doctors with how well she did.  We started calorie count on Monday because she hasn't gained weight.  She hasn't lost weight, but she isn't gaining so they were discussing a possible NG tube (feedings at night).  But they wanted to know how many calories she was getting a day.  I kept telling them that she seriously eats a ton and I was excited to show them how much she really eats.  It is crazy.  Tuesday, the dietician stopped by our room.  She was happy to report Evalette was getting 1200 calories a day, give or take.  Technically she only needs 750-800 a day.  She must just have a high metabolism like her daddy and mommy.  She was amazed.  We are trying to get as many calories in her as possible, through butter, Bright Beginning formula (adding it to oatmeal, potaoes, avocado), and anything else we can.  Seriously it is a full time job feeding Miss Evalette.  We started the neubogen shot on Sunday.  It helps boost her counts quicker.  Her counts bottomed out yesterday, so I am hopefully that we will see a stir by Saturday.  It would be nice to be home this weekend.  So we are just sitting around waiting for her counts to recover.  It is rather boring.  But boring is better than problems!   Not sure what the next phase looks like, as I haven't talked with a doctor for days.  Concentrating on taking one day at a time.

Tonight..

Tonight I feel
LONELY.
10 days...
It seems like an eternity.
It is kind of hard to describe.
And I am pretty sure if my sweet Evalette could express herself,
she would say the same thing-
she is lonely.
She lights up when we have visitors or when the nurse comes in our room.
It is too quiet around here in this little cell room.
I imagine this is what prison feels like.
Boxed in.
Plain, bland walls.
A window that shows a view of the world outside;
a blue sky,
racing cars,
green grass,
a bustling busy city,
people scurrying to their destinations,
It teases you and you ache to be apart of the real world again.
All day long, we read books,
we play,
we sing,
we dance, and
we rock-a-by,
but still there is this constant void.
We aren't home.
We are still prisoners;
literally locked in this tiny room.
There is no Tyrell, Jarom, Lance, or daddy to come play with us.
It makes the days long.
She doesn't want to sleep and either do I.
We just want to go home.
I am learning to be patient,
but somedays I just crack.
I miss my privacy of home,
our schedule,
our family dinners,
my hubby,
cooking,
being with all my children,
being in the sunshine,
sleeping in my own bed,
showering in my own clean shower.
Our hospital family is wonderful, but it gets exhausting
trying to constantly take care of Evalette.
I feel like I am constantly fixing or watching out for something that isn't right.
Whether it is a med that needs tweaking, or too much fluids, or something else.
At the hospital I become a different person..
Grouchy, irritable, and tired.
I just feel like I am constantly in boxing mode-
Hands up, gloves on...
ready to fight if needed.
I am my daughters advocate and she needs me.
The nurses try their best, but lately there have been some hiccups.
Hiccups that I won't discuss because I know they try their best
and this isn't to bash them or the doctors- just a vent of my feelings.
Just sometimes I think they forget that this is our life.
We sleep here,
we eat here,
we live here for sometimes weeks at a time.
Since Evalette was diagnosed 5 months ago, we have spent most of our time here.
No wonder they call it the "Isolation Unit".
Isolation indeed.
Thanks for letting me vent.
Venting is good.
Better than holding it in.
So now I will let it all go;
up and away in my imaginary balloon.
And pray that her counts begin to stir so that we are home by this weekend.
And although I would never change having "cancer" come into our lives,
sometimes it tries my patience to the core.
My soul gets weary,
my body shuts down,
and I just am plain tired.
Yet I know that God loves me.
I know he loves my little girl.
We are not alone.
Literally "our little prison cell" I am sure is always filled with angels aiding in our fight.
He also loves my little boys, who have been without a mother most of the summer
and he loves my amazing, wonderful husband who has manned the house and boys alone,
while still providing for us, for the last couple of months.
And this reminder of love, constant never-ending love,
renews my soul,
gives strength to my tired body,
and my energy returns.
We can do this.
We are being refined, sanded, and made into bright, shiny, polished better people.
Just sometimes the journey gets lonely.
And I get a little lost...
but I always know that we are loved.
Thank you for your prayers.
You are all angels.
We love you.
Here is to the different journeys we are all facing...
may we be strong!
WE CAN DO HARD THINGS!


Thank you to our recent visitors.  You have no idea how inspired your visit was.  Aunt Cathy, Uncle Larry, Shawn, Tannya, Aunt Anita, Uncle Corey, Nikki, and Reagan, thanks for taking time to see us.  Truly it brightened our day.  We have such wonderful family and friends.  And Aunt Anita those books were wonderful...through them I escaped into another world.  I finished them in a day and loved the subject line.  It was perfect.  God is good.  So happy to have you all in our lives!

BIG NEWS>

I have decided that our Heavenly Father has a sense of humor.  And although I do not understand the timing and big picture of things, one thing I know for sure is that HE is in charge.

I am happy to say...

#5 is on the way!!!

And although, this new addition was not planned, we are excited!  We are still unsure how it will all work with the cancer treatments and all, but we are sure it will work out as things always do. The boys are ecstatic and Jarom insists that we need to have two.  I insist the one is just fine (although two would be fun...Alise and I were fun, right mom!).  They hope it is a girl and are already deciding on a name; hilarious names that only they would come up with. They enjoy seeing the weekly update of how "their" baby is growing.  It is fun, it is exciting, it is a blessing to have something else to think about other than "cancer".  Although throwing up and having morning sickness while staying in the hospital isn't very fun.  Thank goodness, we are mostly past that!  I am currently 17 1/2 (yes, that 1/2 is very important) weeks along. That means FEB 10th is the estimated date of arrival! We will be finding out this month, what our special baby is...a boy or girl.  Oh the crazy, fun life we lead.  I am grateful everyday for all that I have...especially my wonderful children.  One more is a blessing indeed.  Keeping kicking little baby...can't wait to hold you in my arms!  

I will tell you what...trying to get four little children to look at the camera at the same time in a quick photo shoot, nearly impossible, but oh they are so CUTE!!

No more hiding it...there certainly is a baby bump!