Midnight Adventures.

Midnight vitals are usually a pretty, quick and easy thing.
We have it down to a science.
Last night or early this morning really, the nurse didn't make it in until 1 am.
I was already in bed,
Evalette was out,
fed and full.
I heard the nurse slip in as I slipped in and out of sleep.
I am not sure how much later,
but I awoke to a blood curtailing scream.
I just knew Evalette was dying...
at least it sounded like it!
I jumped up and ran over to her bed,
scrambling as my eyes adjusted to the dark.
Then I saw the nurse at her bedside...
"Hold this please!" She hollered to me.
Evalette's central line had broke and saline solution was spraying everywhere.
It had sprayed her in the face and awake her from her deep sleep.
It had scared her half to death.
We clamped it and called in the IV team to repair it.
In the hour that it took the IV team come up to our rescue,
we ate crackers, rocked, and played peek-a-boo.
After a 20 min "surgery",
which consisted of superglue and a new sheath,
we were set.
1 hour and half later at 2:30 am, we had a new line,
a new dressing, and scissors from the surgery as souvenirs
(your welcome grandpa...we are told they are great for fishing).
What a night.
What an adventure.

Today is a continuation of that adventure.
We are set to go home, but now her lines aren't drawing back.
Simply put, they can flush saline through them,
but when they try to draw blood return back,
nothing comes.
It could be a blood clot, a flap of skin, who knows.
So we have tried some meds to break it up, but it hasn't worked yet.
We can't go until it does because we can't finish today's chemo until it works.
We are hoping to get out of here by 6 pm.
Then home health will be at our door at 8.
We are all set with 7 sets of meds,
two of which I will be giving to her through her line (IV).
One once a day for an hour and another every 8 hours
(4 am, 12 pm, and 8 pm).
Fun.
Not to mention cap changes, dressing changes, and flushing the lines.
But I am not worried.
Anything to get my baby home.
We have an outpatient appointment at 1 pm on Monday for her Erawina shot.
We will find out more about the scheduling of the second induction then.
Right now, I am just praying that her lines start functioning right so we can go home!!

Heading Home...

We got the ok to head home tomorrow.
I was so thrilled that I jumped up and down right there.
Evalette wasn't sure what to think,
so I twirled her around so she understood that this was something exciting!
All day I have been bouncing around,
smiling from ear to ear,
and anxiously awaiting tomorrow.
It will been 30 days since we have been home
(minus 10 short hours one time for me).
That is a long time.
We can all be together again,
in our house,
just doing normal family things.
Even if it is only for one week.
One week is better than nothing.
The hardest part of going home is understanding that we are coming back.
She isn't better.
This isn't the end.
This isn't the normal route this time.
She has cancer and that doesn't end in one short month.
It takes years to beat.
I am still getting used to that part in my mind.
This isn't RSV, chicken pox, or anything thing like that.
She has cancer.
She has cancer.
She has cancer.
Maybe someday it won't be so surreal.
Anyway, we are glad to be going home
and not to mention a whole week earlier than planned.
I knew she could do it!
Evalette is "clinically" doing very well.
She has had no diaper rash (of which they were very surprised)
She has had no mucositis or mouth sores (of which they were very surprised)
Her white blood counts are coming up and we were at 100 today.
Still very low, but coming up.
She can't go out into public places until they are at least 500, but 1000 is much safer.
We will be back for her last chemo treatment for this first induction on Monday.
And then her second induction phase is scheduled to start May 3rd on Friday.
She will be getting her bone aspirate around then to see if she is in remission.
Someone sent me this quote today.  I love it and wanted to share.
President Uchtdorf said:

"We shouldn't wait to be happy until we reach some future point, only to discover that happiness was already available--all the time! Life is not meant to be appreciated only in retrospect...there is something in each day to embrace and cherish.  There is something in each day that can bring gratitude and joy if only we will see and appreciate it."

I think that this can pertain to anyone in any number of circumstances, but I can't help but think that he is talking directly to my little family.  Despite our difficult or undesirable circumstances, there is much to be grateful for.  So many little blessings each day that I can't help but thank God for.  Truly life is wonderful as we live each day knowing that it is full of possibilities and that we can find happiness and joy no matter the trials we are experiencing.  This is a great reminder to me to see even the littlest of blessings!
Tonight feels like Christmas Eve and I can't wait till morning!!
We are going home.
We are finally going home!

30 Days...

30 days ago,
I was in shock,
our world had suddenly shifted,
and my beautiful, innocent baby girl was sick.
Horribly sick.
So sick that they said her life was in danger.
How could this be?
Although very shaken,
we put our trust in God.
And although this journey is far from over,
we have seen miracles
and our prayers have been answered.
Sweet baby girl is thriving again.
Sweet baby girl is fighting hard.
We are pushing forward,
being strengthened
and we know that all will be well.
Our shattered hearts,
that were broken with fear and sadness,
are being to mend.
Our eyes are beginning to see the bigger picture.
We can do this this.
We promised to do this.
We are starting to understand this "new normal".
Our life is still blessed and
our daughter is still alive.
We are so grateful.

In D&C 121 7-8 the Lord counsels: ". . .peace be unto thy soul; thine adversity and thine afflictions shall be but a small moment; And then, if thou endure it well, God shall exalt thee on high; thou shalt triumph over all thy foes." 

We have been given peace.

We are triumphant.

And we are doing our very best to endure it well.

30 Days means:
Last day of the nasty, nasty steroids!
You have been in the hospital way too long because the hospital has added a new "healthy"smoothie to the menu just with your daughter in mind.  Today I called in and was kindly greeted by the room service attendee.  "Guess what?" she said.  They have new smoothie, a green smoothie just like you guys special order every morning and it even has kale in it!! I will send it right up!"  I laughed.  They know us too well.   And now there are two new healthier smoothies on the menu because of us; a fruit and green one and just a green one.  Yeah.  I love the staff here!
We can go home tomorrow (one week earlier than projected).
Only one more week until the first induction ends and the second one starts.
One month down and 23 more to go!

Getting Ready.

We are getting ready to go home.
I changed her dressing on Sunday
(which will need to be done weekly at home).
I changed her caps on her central line yesterday
(which will need to be done weekly at home).
And I flushed her lines today
(which will need to be done every 12-24 hours at home).
Pretty good I think.
They tell me that I will be a nurse after all is said and done.
I told the doctors today I was getting ready to go home.
They said we could as soon as her numbers start trending up for two days.
We get back labs tomorrow and we will see if they are or not.
I am hoping to go home by Friday or Saturday.
Then we would have one week to be home
before her second induction starts on the next Friday, May 3rd.
Now white blood cells,
lets get going!!!

The Princess Bed.

I got a fantastic, wonderful gift today.
An eggshell mattress to cover the rock hard couch.
One of the families that got released "forever" today gave it to me.
I was so excited that as soon as I got my bed put together tonight that I did
my "cheerleader jump" as my husband calls it,
onto it.
And then I bounced on it again.
Yep, I felt like a kid again.
I call it "our princess bed".
For one, I have to jump to get on it.
It is up so high and I am so short.
It reminds me of the princess and the pea.
Thus the princess bed.
And two, above it hangs two cute princess plaques
that my niece, Carly, sent up for Evalette
to hang in her hospital room.
Princess bed/room indeed.
It is beautifully adorned with James' old green blanket.
The one that he had before we were married.
The one we sat on at the fireworks the night we got engaged almost 8 short years ago.
The one that is now a bit ragged,
has a few holes, and looks pretty sad.
Oh but I love that green blanket.
Not to mention the old flower pillowcase that covers my pillow.
My old childhood pillowcase.
So soft and worn out.
Oh how I love that old pillowcase.
Our beautiful princess bed.
As I was getting Evalette ready for bed tonight,
I set her on the bed.
She curled up into her daddy's old, big green blanket,
laid her head on her mommy's old comfy pillow,
and went to sleep.
Perfect princess bed.
Maybe she felt like she was home.
I hope.
I am going to sleep well tonight!!
Thank you Wendy!!!

I SING YOU TO ME...

"Remember, happiness doesn't depend on who you are or what you have; it depends solely on what you think."
Dale Carnegie

One of the most hardest things of this whole experience is that my sweet baby has gone missing.  Instead of her sweet smile, a scowl usually adorns her face.
She rarely laughs anymore.
It is a sweet moment when she does.
She is constantly watching;
her eyes dart across the room constantly,
waiting and watching the nurses and doctors.
Afraid of them touching her.
She seems sad.
It breaks my heart.
She is just different now.
The baby I knew,
laughed and giggled endlessly.
A smile always lit up her face.
She jabbered and gibbered to us all the time.
She never cried and was so content.
Such a special girl.
And she still is.
You can feel it from her and there is no doubt that
I still absolutely love her,
but it is hard to see such a change in her.
From what I am told it is a side effect of the steroids.
Nasty steroids.
Tomorrow is her last day on them for a while.
Hopefully she can relax and let go.
And come back.
This week has been hard.
She is agitated again.
She is wired.
She can't relax.
She can't seem to sleep very well.
She seems to be on overdrive.
I ache for my sweet baby.
Oh how she must feel.
All I can do is tenderly care for her.
Rock her,
Sing to her,
whisper words of encouragement into her little ears,
look into her eyes and tell her that I love her,
that all is well,
that she is strong,
that she is safe.
She needs me.
I am her constant,
her stability,
and her rock.
Weeks ago, when we first got admitted to the hospital,
when she first started the steroids she went through a rough time.
It was hard for me.
One time when she won't settle down at 4 am,
I held her in my arms,
tight against my chest,
and sang primary songs in her ear.
Silently, I prayed to my Heavenly Father
to give me strength,
to give me understanding,
to help me know how to help her best.
Suddenly the words from Australia, one of my favorite movies, came to mind.
"I sing you to me Mrs. Boss..."
"And I will hear you my love."
The words tenderly exchanged between 2 of the main characters
as they were forcibly being separated.
I felt strongly that my sweet little girl's spirit was off somewhere else;
playing,
dancing,
singing,
smiling,
and laughing.
She was safe.
She was happy.
And that I was here to take care of her body,
to help it heal,
to provide the necessary tools for it to be well again.
Until then she would be taken care of and kept safe for me.
She didn't and won't have to feel all the pain,
the confusion,
and the heartache from the cancer overtaking her body.
Or from the side effects of the strong medications she was being subjected to.
So I told my Evalette that I was here,
waiting for her to return when she was ready to.
That I would sing her to me
and that she would hear me and know that I was there.
So I think of that when she is away,
when she isn't herself, and struggles with the effects of the meds.
I sing softly to her and know that she hears me.
Sometimes,
sometimes she comes back to me.
And I am blessed to see my sweet little baby again.
She smiles, she laughs, she comes home to me.
I cherish those moments.
And sometimes she will put her hands on my face,
crinkle her little nose,
and put her forehead against mine.
And we connect on a deep level;
Soul to Soul,
Heart to Heart.
Mother and Daughter.
Friends.
It is so special to me.
So sacred.
I thank my Heavenly Father for giving me those special times.
Those times give my strength
and remind me of that all is well and
things are as they should be.
And that HE, our ever loving Father is taking care of both of us.
The other day, we were building blocks on her bed.
Suddenly she put her arms around my shoulders,
one hand clasped my hair,
while the other little hand patted my back,
and she pressed her sweet face into my shoulder.
And she didn't let go for over 5 minutes.
She most of known that I needed her.
She wanted to comfort me.
The little sweetie.
Then she hugged and kissed me and
she let me take pictures of our moment together....
well I did my best.
Happiness radiated from her eyes.
I love it when she comes back to me.
I am grateful for family members on the other side
that are helping take care of my little girl.
I am grateful for their strength and love.
To my sweet baby,
I will sing you to me
and I know that you will hear me.
Know that I love you,
know that I am making sure you are getting the best care,
and know that I know that you are strong and that you can do this.
And when you are ready and things are safe,
come back to me completely,
I am waiting with arms opened wide.
I love you!

LOVED...

Evalette and I woke up on the wrong side of the bed today.
Last night was long.
For some reason, my little girl was a bit off.
Sleep didn't come easy and she was agitated.
When midnight vitals came around,
she didn't want to be bothered.
She growled and fought.
Finally back to bed.
Then 3 am came,
and she was up crying.
Then 4 am was antibiotic time.
Really, 4 am...ugh.
Then at 7 am, she was up again.
So unlike my little girl.
Her normal wake up time is 9 am.
So our day began,
earlier then we both wanted.
Then this cute monkey was delivered to our door.

Adorable, cute, pink monkey.
Pink is our favorite color.
We were instantly in love.
I discussed names with Evalette.
Miss Happy is was decided.
She has a fabulous smile.
I hung her on the front of Evalette's crib.
She is our reminder to choose to be happy.
Life is so much better when you smile.
So every time we passed Miss Happy,
I would smile and Evalette would give her a kiss.
Thank you, Caitie.
The day was looking better.
We were going to make it better!
Got breakfast done and meds over with.
First nap was at 9 am,
a quick one before her chemo shot.
I rushed out to take a shower.
It was going to be a good day.
I got a nice hot shower.
Evalette snoozed for an hour.
Next thing on the list.
Chemo.
Finally, the muscle shot was over.
Then two antibiotics were finished
and nap time was here again
This time for both of us.
I conked out, but Evalette had different plans.
Every time I drifted in and out of sleep,
I heard my baby laughing.
She was playing in her crib,
jabbering away with Miss Happy.
I was fine with that and went back to sleep.
Miss Happy, you are a fabulous babysitter!
I needed that nap.
After naps, another set of vitals.
Tommy was our tech today.
Evalette and I really enjoy him.
He is so good with her and he makes sure I have what I need.
"Your hair looks great today.
You look beautiful!" He told me.
"Is someone special coming to see you?"
hinting that maybe my hubby was on his way.
I wish.
Nope...I just feel better when I get ready.
His comment boosted my spirits,
especially since I didn't have any makeup on.
And it was a nice change from the normal,
"Are you the mother?  You must be because you look so tired."
that I hear from her new nurses.
Sweet Tommy.
That was just what I needed to hear.
The rest of the day passed quickly.
Dinner, vitals, and meds.
Last the antibiotic before bed.
Then a visitor showed up.
A friend from high school.
She had brought us a gift that she was delivering
from other friends of mine from high school.

A huge gift.
It was bigger than Evalette!
Thanks Maren.
Evalette was excited.
It was another time that I got to hear her laugh.
We opened it up and couldn't believe our eyes.
So many thoughtful things.

What wonderful friends I have.
Thank you, Dannielle and Kaye.
It was amazing!
Soon she was off to bed,
content and happy unlike the night before.
Then I got on Facebook and
learned that another good friend from high school
and her two boys had dropped off some blankets at the hospital
and had left a special PINK one for Evalette.
She loves blankets.
And another friend from home is going to make a special book for my boys.
One from me to them.
So touched.
And then when I talked with James,
he mentioned a letter that had come in the mail.
It was from my aunt and uncle and cousins.
Enclosed was a gift card of which they said was from grandma.
Or would have been if she was alive.
My Grandma Karen, my namesake.
I cried.
It meant so much.
I miss my grandma.
But I know that she is near.
How had so many people known that Evalette and I needed encouragement today?
Then I thought about all of the wonderful things people have done for us.
Aunts, Uncles, cousins that have visited and sent cards.
An aunt that sent gifts for the boys,
so they won't feel left out.
They loved that!
Friends who write comments on Facebook and share support and give us strength.
One of my best friends, Jessica, stopped by a while ago.
She remembered Evalette's birthday and had brought a gift.
Cute, adorable purple leggings.
Something I had been wanting to get but had never had the chance.
I can't believe how LOVED we are.
I can't help but feel so underserving.
Thank you all for taking the time to show us that we are loved.
It gives us strength to move forward with positive thoughts and courage.
Here is too a fabulous day tomorrow!!!

VISITORS

Today was grandparents day at the hospital.
Not really.
But for us it was.
Evalette was able to see both sets of grandparents today,
minus her grandpa Sparks
(we missed you).
She loved her visitors.
Daddy and the boys stopped by.
We always love seeing them.
(I need to get those pictures off daddy's phone)

Then our good friends that we haven't seen in a year
dropped by.
I cried with joy.
I was so happy to see them.
Then my cousin Shawn brought us dinner.
It was amazing.
And she just adores him.
Then the cousins came.
She smiled and let them hold her.

We just loved all of our visitors today.
We feel loved.
Thank you.

Letting Go.

“I recognize that, on occasion, some of our most fervent prayers may seem to go unanswered. We wonder, ‘Why?’ I know that feeling! I know the fears and tears of such moments. But I also know that our prayers are never ignored. Our faith is never unappreciated. I know that an all-wise Heavenly Father’s perspective is much broader than is ours. While we know of our mortal problems and pain, He knows of our immortal progress and potential. If we pray to know His will and submit ourselves to it with patience and courage, heavenly healing can take place in His own way and time.”

—Russell M. Nelson, “Jesus Christ—the Master Healer,” Ensign, Nov. 2005, 86

People have been asking me
"How are you doing"
to which I reply,
"Doing very well."
I feel that I have gotten used to our
"NEW NORMAL".
We have a routine.
We do what we have to do.
We see a bright future.
"I am doing well."
But then a couple of days ago, I did something that tipped me over the edge a bit.
I read our family blog.
I love that blog.
It is the place I poured out my heart for 5 years.
Jarom's birth,
Tyrell's first owie,
Our first house,
Our family trips,
my third pregnancy,
the birth of our third son,  Lance,
a NICU stay,
our moves,
our fun, crazy, exciting,
never boring life.
It was all there.
My last couple of posts
were about us as a family,
at home together;
laughing,
playing,
dealing with four little children (ages 6 and under),
the ups and downs,
but still we were together loving life.
I cried,
ok lets be honest here,
I sobbed.
Oh how I missed and ached to go back
and to relive those memories.
Now I was here,
 miles away from home with Evalette.
The boys and daddy were at home,
separated from us.
How is that fair?
We are family.
We were supposed to be together.
My heart ached, literally ached.
I just couldn't bear it.
But I couldn't deal with it now.
Much had to be done.
I shook it off,
shut the laptop,
pushed away my emotions and confusion,
and went to take care of my baby.
She needed me and I desperately needed her.
That night, we skyped like usual.
I struggled to keep my composure as I watched my boys.
I missed them.
I needed them.
They missed me.
They needed me.
I watched them as they laughed, talked, and told me about their day.
I ached to pull their little bodies next to mine.
To rub their tender heads,
to whisper words of love in their ears,
to sing them their lullabies,
to tuck them snug in their beds,
and to be there when they woke up the next morning.
I was/am their mother.
But instead I was away.
Their daddy was mommy and daddy at night.
Their wonderful aunts and grandma were their mommies during the day.
Because their mommy was gone.
It hurt.
I cried again as we said goodbye.
The emotions I had held at bay for 3 weeks, broke.
I longed to be home with my entire family;
all of us together.
Just as it was before.
The realization that our life was different hit me hard.
For the next two years, we would be different.
Evalette and mommy at the hospital.
Daddy and the boys at home.
I understand that that was the way it needed to be.
But it didn't make the hurt, the pain, and ache go away.
I needed my family, my entire family.
More than anything, since I can remember
I had wanted to be a mother.
People would ask me what I wanted to be when I grew up and I would say,
"A mom."
Simple as that.
And now I could only be a mother to one of my precious children.
Even though I knew that my boys were being mothered just fine right now,
I still felt guilty for not being the one doing the mothering.
Just like my dad said,
the guilt hit me like a rock.
They needed me and I had promised to be there always and I wasn't.
Today, they come up to visit.
I met them outside as they pulled up.
I ran to them, my arms opened wide.
I embraced them, kissed them, hugged them close.
My heart hurt less and my arms felt full again.
I was already dreading the time when we were separated again.
I took my boys to lunch while Daddy played with his princess.
The hospital staff would comment as we passed;
they were so good,
so well behaved,
such a handsome bunch.
I was proud.
A young couple sat next to us.
We chatted and exchanged stories of why we were here.
A while later, as the couple left,
the woman touched my shoulder and said,
"I just have to tell you good luck and
that I can tell that you are a very good mother."
Your boys adore you and you them.
You are such a good mother."
My eyes filled with tears and I thanked her.
Her words had meant to much.
I am a good mother.
And I can still be a good mother to my boys while I am away.
I was encouraged.
I was reminded that I can do this.
I CAN DO HARD THINGS.
We are blessed.
And although we are apart,
we will be together soon.
We love each other and that doesn't change no matter where we are or what is going on.
We all feel that.
Soon it was time to go,
I gathered my boys around me and reminded them of my love.
"How much do I love you?" I asked
"Forever and Always!" they answered.
I have told them that every night since they were born.
They know I love them.
They know I will be home soon.
And when I leave again that I will come back.
They are safe,
they are loved,
and they are being watched over.
I can still be their mother from afar.
So I am a work in progress.
Learning to let go.
To let go of control.
To let go of guilt.
To let go and
to trust
and to let us be guided by HIM who knows us best.
Letting go.
Letting go.
I am letting go.

Code. Blue.

*Please nobody begin to worry...Evalette is fine.  The code blue was not for us.

Night time at the hospital is quiet.
Well as quiet as a hospital with all its beeping noise can be.
It is the time that I lay my little sweetie to sleep.
Tuck her between her special blankets
and kiss her as she drifts off to sleep.
Oh wonderful sleep.
Then I sneak away.
I can't sleep.
There is no way
that I am going to lay down  on that
so called couch,
"rock hard couch" that is,
until I absolutely have to.
And there is no way that I can sit in the room with baby.
She is too light of a sleeper.
I guess I am to blame...she got it from me.
So I wonder off.
Usually I find myself in the family consultation room
catching up on bills,
checking up on family things,
doing insurance paper work,
reading,
blogging of course, and
having late night talks with my one and only.
And then sometimes I wonder out to the family room outside of the unit.
I watch people as they go by,
try to get a glimpse into their lives, and understand who they might be.
Last night was no different,
I found myself in the family room watching the doctors sped by
as if they had something so important to do and
families coming and going.
I sat, lost in my needless thoughts when the alarm rang.
CODE BLUE,
CODE BLUE
it blared.
My heart jumped and
then it began to race.
CODE BLUE,
third floor ROOM #3061.
My heart stopped.
My friends,
my dear friends that I had just met in the unit a couple of weeks ago,
they had just been moved down there.
Their little Eli was in critical condition.
"Not Eli, please not little Eli",
I pleaded silently to heaven.
The doctors suddenly appeared,
running, racing, and ready to help the child in need.
I waited and waited but the code was not cleared.
So I prayed more.
"Bless Eli, bless Liz and Logan, his parents.
Bless whoever is in need at this moment.
Bless them with peace."
I was so overcome with a great deal of sadness for whomever was experiencing this ordeal.
I couldn't imagine.
Yes, my child was sick,
but yet my child was safe in her bed.
Breathing,
heart beating,
alive,
and well.
She was stable.
And she is doing fantastically well.
Suddenly I was so grateful.
So grateful to have only of been given the trial of having "the best childhood cancer"
I guess you could say.
A cancer that is curable.
A cancer that is beatable.
A cancer that can have nasty complications and side effects,
but still a cancer that babies miraculously do well with.
A cancer that will not necessarily claim the life of my sweet child.
How did I get so lucky.
How did I get so blessed.
I thanked my Heavenly Father
for allowing my more time here on earth with my daughter.
For sparing her life.
That she was still sleeping, tucked away in her favorite blankets.
Safe, warm, and alive.
Then I prayed again for that family who was watching their child struggle to live.
I prayed that if it could be so that their child could live also.
I went to bed soon after that.
Still shaking with the realization of how fragile life really is.
I couldn't sleep so I prayed more.
I prayed especially for Eli, Liz, and Logan.
Finally I fell asleep.
The first thing upon waking up, I was determined to find Liz and Logan.
I needed to know if all was well.
Sure enough, they were in the parents lounge.
All had to be well.
They were there.
I told them that I had been so worried when I heard the CODE BLUE.
Liz laughed and said, "Did you hear the first or second one?"
Come to find out,
little Eli did CODE last night.
But he wasn't the first call at 10:30 pm that I had heard.
His came later at 2:30 am.
He had had a blood clot,
but though the skill of good doctors,
they got the clot before it went to his heart.
A very close call but his life had been spared.
Liz and I hugged.
I was so grateful,
so relieved,
so glad that little Eli had been given more time
and that I had prayed in his behalf shortly before the code was called.
Being here my eyes have been opened to a new world.
A world where life has new meaning.
Where the physical and monetary things of the world matter little.
For much more is at stake.
Truly family is the most important thing.
Let us pray for the family's who's special sweethearts are being called home
and let us pray for the little sweethearts who are still fighting hard.
They will find strength from our prayers.
To little Eli and his family, you guys amaze me with your strength.
Keep fighting.


It seems that after Evalette's diagnosis
every time I see a helicopter fly over head,
hear the sirens of the ambulance,
or the blare of the CODE BLUE alarm,
my heart stops.
I pray and pray for the family being affected.
For I have been in those shoes and
know how it feels to feel helpless and
lost.
I know how it feels
to surrender your child to God
and ask him
and beg him
to spare your child's life.
And I now understand that no matter what
that HE will bring you peace.
For HE truly is over all and loves us all.
He is our ever loving father.
He has his arms open wide,
welcoming all who are called home early.
Those strong little ones.
Truly they are amazing.
I thank God everyday for my precious daughter
and for the time I have with her here on this earth.

So I am told...

I am told
that this rat's nest

on the back of my baby's head
is the start of her precious hair
falling out.
It is a clumpy, frizzy,
ratty mess.
And from what I am told
no amount of brushing, combing, bathing,
or use of any product for that matter will fix this mess.
And once again, we hear that classic phrase,
"It is normal."
She has seemed to thin out in the front,
but to everyone's surprise she still has most of her hair.
Maybe we will be one of the lucky ones.
If not its ok, my baby looks gorgeous with hair
and will look gorgeous without hair.
Either way,
I decided that the ratty, matty mess
had to GO.

Now it is just a frizz mess.

Oh well, who notices the back anyway.
Still cute as ever!

Today...

The last couple of days
I have felt a bit down.
Now nobody flip out.
I am fine, but day after day
at a hospital starts to wear you out.
Everything has started to blend together.
The gray walls, the brown couch...
all the muted colors going together.
BORING.
DRABBY.
UGH.
Chemo and meds.
Chemo and meds.
Vitals and
more vitals.
No time to shower.
No use dressing up.
I am grateful to be BORING in the medical sense,
but other than that BORING just isn't me.
So I celebrated her last day of ARA-C,
daily chemo with dressing up.
BRIGHT ORANGE and BOLD PINK sure brightened up the place.
No worries, no longer BORING here!!
Dr. Affify even noticed us as she came by.
"How bright and lovely.  I love the colors!"
Yes.
Exactly what we were going for.
Lets brighten up the place!

Bumpity, Bump.

We hit a road bump today.
Just a little one.
Not to worry.
Right after Evalette's chemo,
(her daily chemo is done for this first 5 week induction;
it was a muscle shot and a push chemo today)
she took a nap.
I just kept having a feeling to check on her.
I did and sure enough she was very warm.
Nurse took her temp and it was 102.
In one hour she went from normal to 102.
Guess that is what happens when you don't have white blood cells to fight off infections.
So they did blood cultures, started an antibiotic, and started fluids.
They aren't sure if she got a fever from the chemo, if it is an infection, or what,
but after we saw a million doctors,
got some meds,
started the fluids,
and rocked in our chair for hours
her fever went down, she sat up,
and ate some squash.
She has been fine since.
Already over that bump
and still moving forward.
Fingers and toes crossed
that next week we are homeward bound!
Thank you for your prayers and good wishes...
we are blessed.

GRATEFUL!

It seems as of late, it is hard to see the good in the world; the boston marathon bombings, the common core initiative that has us all worried, missing kids, and so much more.  Darkness looms over us, threatening our peace, and weighs its dark self down upon us.  Although there is much darkness, the opposite must always also exist.  And I have witnessed so much of the good lately.  I must share.
 I am so overcome with gratitude for the great goodness of the people around me.
So many families in our neighborhood at home
 have been bringing my family dinner every night
since I have been away.
Truly there is still good in the world.
We received a package at the hospital the other day.
Evalette and I were so excited.
A friend from my hometown, lovingly put it together.
Each thing was just what I had been thinking we needed.
She made a beautiful sign of her name.
I hung it across Evalette's crib.
It brightens the room and reminds me that we are loved.
Truly there is still good in the world.
A dear friend of mine
sent me a hospital survival kit.
It has seriously saved the day for me many times.
She didn't have to put that all together for me, but she did.
Truly there is still good in the world.
My dear friend from school did a fundraiser for us.
She was able to raise enough to get Evalette some oils.
I diffuse them in the hospital room.
All the nurses and doctors love the smell of our room.
They have brought me comfort and help me relax.
Truly there still is good in the world.
Our neighbor made me some signs of the quotes I just posted on Sunday.
I cried when I saw them.
How thoughtful.
How perfect.
How kind.
Truly there is still good in the world.
My wonderful aunts, uncles, and cousins have visited.
Even though we haven't been in touch much in years,
they have been here in my family's time of need.
Truly there is still good in the world.
My mom and sisters have lovingly watched my boys
while their mommy has been away.
They love them like their own.
My heart is full of thankfulness.
Truly there is still good in the world.
The endless support, the prayers, and kind words of
many people through emails, Facebook, and cards.
Thank you.
We are touched.
Truly there is still good in the world.
To all the wonderful people that I don't know,
that have made donations to the Ronald McDonald Foundation....
Thank you.
You made it possible that my family could stay close
as we have an extended stay at the hospital.
You helped provide us with home cooked meals and
warm beds to sleep in.
Thank you from the bottom of my heart.
Truly there is still good in the world.
So although there is much darkness, there is always light.
I am so grateful for those that have shared their light with my family!
God Bless You ALL!