Day 50

     Katie's spinal tap/chemo went without a hitch today.  Her port was still accessed because of the IV antibiotics she has been on, so we didn't have to deal with that stress today.  They took the access out of her port while she was still sleeping, so we didn't have to deal with that either.  Katie also woke up quickly and happily today.  It was amazing!  Each time we do this we have a different anesthesiologist and they each do it differently.  I got today's "formula" so that we can make sure it is done this way each time in the future.  It was so much better today!  Katie hasn't really expressed any pain yet either.  She got a bit grumpy...okay, a lot...but now she seems fine.  I am not sure what to expect tonight or tomorrow, because each time has been so different (okay, by the time I finished writing this, Katie is hurting).  I do know that she is super excited to take a "real" bath tomorrow.  Since we were in the hospital she hasn't been able to take a bath the way she wants to.  She has had to have plastic over her port and access and just a little water in the tub.  It has been extremely frustrating for her.  So she is looking forward to a good bath - she keeps talking about it.
     Today I thought some more about Joseph of the Old Testament.  My understanding is that Joseph was thirty years old when he interpreted Pharaoh's dream and that he was seventeen when his brothers sold him into Egypt.  So, the adversities of his life lasted about 13 years.  I read the following expert today:
"The story of Joseph, the son of Jacob who was called Israel, is a vivid representation of the great truth that 'all things work together for good to those who love God.'  Joseph always seemed to do the right thing; but still, more importantly, he did it for the right reason.  And how very, very significant that is!  Joseph was sold by his own brothers as a slave and was purchased by Potiphar, a captain of the guard of Pharaoh.  But even as an indentured servant, Joseph turned every experience and all circumstances, no matter how trying, into something good.
"Joseph vividly demonstrated why he was favored of the Lord, or, as the scriptures said, why 'the Lord was with Joseph, and he was a prosperous man....' (Gen 39.)  His reliance was upon the Lord.  His trust was in the Lord, and his allegiance ran to the Lord.
"I believe this is the greatest lesson that can be learned by the youth of Zion - to do the right thing because you love the Lord.  It is so vitally important that, I feel, if you do anything in righteousness for any other reason than you love the Lord, you are wrong - at least you are on very shaky ground.  And somewhere your reasons for acting in righteousness will not be strong enough to see you through.  You will give way...Unless your motives are built upon the firm foundation of love of the Lord, you will not be able to stand." (Hartman Rector, Jr., "Live above the Law to Be Free") 
     Like I said, I am trying to take all this in and understand it - what it means to me - all of it, from the scriptures and learning from those who have experienced the deepest opposition to their happiness and well-being, to me and  learning from our experience with Katie.  I know that I can't simply wish change upon myself (as I briefly blew a gasket again today), I know it is a process of "becoming".  I also believe that doing "the right thing" for Katie, or because of Katie, "isn't enough"-that in and of itself won't last or see me through.  I know I need to do it because I love the Lord and am wanting to please him.  It was said in church on Sunday, that Charity isn't something you "do" but something you "become".  (I think that was the quote).  How though?  How does this change take place?  How do I truly internalize all that I am learning and allow it to change me?  I don't have all the answers tonight.  So, I am going to go to bed now... Today I am glad for my dear friend Barbara who is going through a battle with breast cancer.  She is brave, courageous and such an example of righteousness to me.  Her friendship has blessed my life.  She was my first roommate in college and became "family".  Barbara was always making people laugh.  Today, through her example, she reminded me to find laughter even in the most difficult of moments. (She and Katie now have matching hairdos). 

Day 49

     Katie went for her check-up today.  All of her levels were very good.  She is going in tomorrow morning for her last (4th) spinal tap for the month.  We have two more weeks in this consolidation phase and then we will move into the next phase.  Katie has continued to have tummy trouble - we are going through multiple changes of clothes a day and sheets on the bed - hopefully that will get better now that we are going off the antibiotics.  Speaking of which, she had her last dose of antibiotics today.  I am a little worried about that though,  because she has a bad cough still.  Guess we'll see... Conner's glands are still swollen, but he seems to be doing better.
     Today my thoughts turned to Joseph of the Old Testament.  "Jehovah didn't explain to Joseph what He was doing through years of heartache (he was hated by his brothers, sold as a slave, imprisoned, falsely accused of attempted rape, threatened with execution).  He was expected, like you and me to live out each day in something less than complete understanding. (Dr. James Dobson)  "For my thoughts are not your thoughts, neither are your ways my ways, saith the Lord."  (Isaiah 55:8)  Today I am glad for the modern day convenience of a washer and dryer - can you imagine life without them?

Day 48

     Today Katie walked back and forth between her Grandma Epps and me, from couch to chair.  Katie was wobbly, unstable, and as timid as a toddler just learning to walk, but her reaction was that of a 2 & 1/2 year old who has lost and regained her ability to walk.  Each time she reached my arms, she would squeeze me tight, and she just about burst with pride and joy!  She laughed and giggled.  She was so pleased and proud of herself - and I was so proud of her.  Katie is such a trooper!  She is brave and strong and sweet. 
     I have thought much about the lessons I am learning from Katie, and at her expense.  Lessons of charity, long suffering, patience, endurance.  Katie is so young, I doubt she will remember much of her experience with cancer, but I will.  So, it seems this refiners fire is meant for me.  Katie has had to endure so much already, I just don't want any of her pain or suffering to be wasted or in vain. 
     So, maybe having said that, you can appreciate my frustration with myself for once again getting wound so tight, that I blew my top.  Not a big deal really, just a minor infraction, I got mad, raised my voice, and threw something on the ground, it didn't break - my anger was vented....but to my shame, I had offended my husband, and left Conner asking, "Why did you throw that on the ground?"  To which I could only respond, "I don't know."  Then Katie kept questioning, "Why is mommy sad, why is mommy sad?" Over and over again.  I tried to explain I wasn't "sad" - just...tired.  But, do you see?  I feel frustrated at myself, at my lack of self-control, lack of progress, my poor example - my lack of long suffering and patience.  I am not feeling sorry for myself here, and I am not looking for sympathy - just wanting and needing to do better.  I want to progress and grow, I want to learn and improve.  I want to be better for having gone through this - because KATIE had to go through this.  I also wish I could somehow impart the lessons I am learning now, onto Katie later, so she won't have to go through something like this again, in order for her to learn the lessons I am now having to learn at her expense.
     I know the Lord will not allow the negatives in our lives to remain negative, if we choose to make them positive...but that is our choice.  Like Paul affirmed in Romans 8:28, "And we know that all things work together for good to them that love God."  I know this is my choice.  I can let this bring me down and become bitter and play the martyr, or I can deepen my sense of purpose, conversion and worthiness.  Today I read, "It is in the crucible of adversity that the gold of godliness is refined, molded, and shaped to perfection....Perhaps we place too much emphasis on our present sufferings because we do not fully realize the promise of future rewards or the Lord's ability to add the vertical line that makes our present negative into a godly positive.  (S. Michael Wilcox)
     The Lord once comforted the early Saints of this dispensation by saying, "Verily, verily, I say unto you, ye are little children, and ye have not as yet understood how great blessings the Father hath in his own hands and prepared for you; ...be of good cheer, for I will lead you along... The riches of eternity are yours" (D&C 78:17 - 18).  "For since the beginning of the world men have not heard, nor perceived by the ear, neither hath the eye seen, O God, beside thee, what he hath prepared for him that waiteth for him" (Isaiah 64:4). 
     I truly felt as a little child tonight (in front of my husband and children).  I know that our mortal trials are nothing as contrasted with eternal glory...I know that, but the days are long and I am exhausted.  Somehow I need to gain and keep an even greater perspective.  I need to do and be better.  I go back to the definition of charity in 1 Cor 13, "Charity suffereth long, and is kind...Doth not behave itself unseemly...is not easily provoked, thinketh no evil;...Beareth all things, believeth all things, hopeth all things, edureth all things."  Oh, how much I still have to learn!!  But I will not have this experience with Katie be wasted!  I will do my best to "be of good cheer" for I know He will lead me along.

P.S. Conner is doing better now that he is on antibiotics.

Day 47

     Seriously, I don't know what the deal is.  If it's not one of us, it's the other.  Katie is doing fine today, but Conner still has a fever.  We took him to "Twilight Pediatrics" tonight - because nothing else was open today.  His glands are swollen and his fever was 102.6 at the doctors office (on ibuprofen).  We still are not sure what he has, but since his glands are swollen, it isn't a virus (I'm told).  We just got home at 9:50 p.m.  Conner is eating eggs at the moment - the first real thing he has eaten in 2 days.  He will be on antibiotics for the next 10 days.  Katie is still on her intravenous antibiotics 3 times a day (getting her 3rd dose for the day, as I write this), so hopefully, she won't get whatever it is that Conner has.  Hopefully the rest of us won't get it either!  We have been a pretty healthy family - up until now anyway!  We have never had so much sickness as we have during this past month or two.  I don't understand it...
     Dr. James Dobson has said, "Our task is not to decipher exactly how all of life's pieces fit and what it all means, but to remain faithful and obedient to Him who knows all mysteries."  "Draw nigh to God, and he will draw nigh to you..." (James 4:8)  Today we are glad the Freeman's let Scott & Katie, Cooper and Nathan come and ride their mule today - and let Conner collect some eggs.  It was memorable and joyful.
    

Day 46

Merry Christmas!  We had a nice day.  We opened presents, had breakfast, went to church and then went to dinner with Scott's family.  Katie was full of smiles most of the day and seemed pain free.  We came home early from the family dinner, because I discovered Conner has a fever and both he and Katie were tired and fussy.  Conner's fever hit 103.6 by the time I got home and got medication for him!  He told me his legs hurt..?? 
     Today we are glad for the birth of our Savior, Jesus Christ.  "For unto us a child is born, unto us a son is given..."  (Isaiah 9:6, 2 Nephi 19:6)  Again today, we wish to thank everyone for your acts and gifts of kindness, large or small, by word or deed, by mail or doorstep, in person or by prayer - THANK YOU! 
P.S. I didn't get my present - the vacuum part.  Conner said maybe we can look again in the morning. =)

Day 45

     It is day 45, that is amazing to me, here we are, Christmas Eve. We have had quite a journey so far.  As the nurse said on Thursday, "Man, you guys sure have had a rough start, it's sot supposed to be this tough".  It has been tough.  However, it has been a touching sweet journey as well.  So many people have helped lift our burden.  YOU have inspired us!  All of you, with your words and acts of kindness, you have helped us feel the hand of God.  We have truly felt strengthened by all of the prayers offered on our behalf!  Your charity, the pure love of Christ, has humbled us.  How grateful we are to you!  We have been able to make it through this past two months because you have helped us.  THANK YOU!
     I am exhausted and not thinking clearly, we had just gotten home from the grocery store last night when I told Scott, "I didn't buy anything for Christmas Eve dinner."  I wanted to have a nice dinner, but was to tired to go back to the store and I didn't know what I was going to do.  Not 5 minutes later the doorbell rang and there on our doorstep, someone had left us a Honeybaked Ham.  This was our Christmas Eve dinner and an answer to a frazzled woman's prayer.  I felt like someone had been inspired and they had listened to a prompting.  Our need was met.  It was so nice to be together tonight for such a wonderful (and easy) dinner.  It was delicious.  Thank you!
    Tonight we had another generous anonymous giver.  How do we thank you?  We are deeply touched and will forever remember and be grateful for this gift.  There is a plan in place, and this gift will help make this plan a reality, and bring joy to Katie on a regular and ongoing basis.  Thank you!
    It is humbling to be on the receiving end, but we have learned so much, and we are grateful.  We hope and pray we will always remember to be as kind and generous to others and others have been to us.  We are overcome with appreciation and gratitude for your love and Christlike examples of giving.  Again, thank you!  One more time, I am turned to the poems my dad gave me.
"A PATTERN FOR LIVING"
Christmas is more than a day
at the end of the year,
More than a season of joy
and good cheer,
Christmas is really
God's pattern for living
To be followed all year
by unselfish giving...
For the holiday season
awakens good cheer
And draws us closer
to those we hold dear,
And we open our hearts
and find it is good
To live among men As We Always Should...
But as soon as the tinsel
is stripped from the tree
The spirit of Christmas fades silently
into the background
of daily routine
And is lost in the whirl of life's busy scene,
And all unawares we miss and forgo
The greatest blessing that mankind can know...
For if we lived Christmas each day,
as we should,
And made it our aim to always do good,
We'd find the lost key
to meaningful living
That comes not from Getting,
but from unselfish Giving...
And we'd know the great joy
of Peace Upon Earth
Which was the real purpose
of our Saviour's birth,
For in the Glad Tidings
of the first Christmas night,
God showed us
The Way and The Truth
and The Light!
(Helen Steiner Rice)
     Tonight we are glad for your examples and hope to emulate them.  We are also glad Conner gave mommy the missing poop sample today! =)  It was "hiding" under the spare bed in Conner's room...Still no vacuum part though.  Maybe I will get that tomorrow for Christmas!  Katie had a pretty good day, she was hurting this evening, but nothing Tylenol couldn't fix.  She had a fun day with 3 of her brothers (Nathan, Cooper & Conner).  Cooper came to visit.  Katie and Conner cried when he left tonight, but they had fun when he was here.  We are grateful for all of you who follow Katie's blog.  To me, that is a great act of charity, in and of itself.  MERRY CHRISTMAS!

Day 44

      Katie is smiling today and that makes us happy.  After we finished giving Katie her medication last night, at 11:00 p.m., we ALL slept through the night!  First time.  It was great!  So, today we are glad for sleep.  Here is another poem by Helen Steiner Rice (from the booklet my dad gave me). 

"WHERE CAN WE FIND HIM?"
Where can we find The Holy One?
Where can we see His Only Son?
The Wise Men asked,
and we're asking still,
Where can we Find This Man
Of Good Will?
Is He far away
in some distant place,
Ruling unseen
from His throne of grace?
Is there nothing on earth that man can see
To give him proof of Eternity?

It's true we have never looked
on His face,
But His likeness shines forth
from every place,
For The Hand Of God is everywhere
Along life's busy thoroughfare...
And His presence can be felt and seen
Right in the midst of our daily routine,
The things we touch and see and feel
Are what make God so very real...
The silent stars in timeless skies,
The wonderment in children's eyes,
The gossamer wings
of a hummingbird,
The joy that comes from a kindly word..
The autumn haze, the breath of spring,
The chirping song
the crickets sing,
A rosebud in a slender vase,
A smile upon a friendly face...

In everything both great and small
We see The Hand Of God In All,
And every day,
somewhere, someplace,
We see The Likeness Of His Face...
For who can watch
a new day's birth
Or touch the warm, life-giving earth,
Or feel the softness of the breeze
Or look at skies through lacy trees
And say they've never seen
His face
Or looked upon His throne of grace!

     I have seen the hand of God and the likeness of His face!  I have felt his presence.  I am grateful for His grace.

Day 43

     These doctors!  When we went in this morning for Katie's procedure, the doctor walked in and said, "So, I understand Katie had a systemic staff infection."  Huh!?...What?...Excuse me?... I told him I didn't know that she had a staff infection.  After he left I asked Scott if any of the doctors had told him that, I thought maybe I had missed that somehow.  No one had said that to Scott either.  We questioned the doctor further, because we had been told it was possible phenomena, then an intravenous infection, but no one had said "staff".  He said that she had a staff infection running throughout her blood stream, probably related to her having a port.  I just don't understand why we were in the hospital 3 days and no one had told us that.  I guess the important thing is that she is getting the antibiotics she needs.  It is my understanding Katie's staff is unrelated to Nathan having a staff infection a couple of weeks ago.  I think Katie somehow got her infection during or because of her last procedure.  ALthough, no one can say for sure. 
     Katie's procedure went fine today.  She had a hard time waking up, she woke up very upset.  It was difficult.  Tonight, Katie is hurting some and she is tired, but she seems okay.  Our Conner is definitely having a hard time - not just your typical 4 year old issues, but we will do our best to help him through this.  Today we are glad for a roof over our heads and a bed to sleep in (I just hope we get to sleep in it tonight! =)).  Throughout all of this, it has once again been reaffirmed to us, that WE are not in control.  "Know the Lord is in control, and refuse to be shaken in your faith." (Dr. James Dobson)   "For God hath not given us the spirit of fear; but of power, and of love, and of a sound mind." (2 Timothy 1:7)  I refuse to be shaken!  Faith, power, love and a sound mind - that is what I am going for. =)

Day 42

     Katie is home and she is okay.  We hadn't expected this.  Katie was acting fine, even on Saturday night (the night we took her to the hospital) she just had a fever and a slight cough.  We had been encouraged by the doctors to take Katie out and about, they said it would be fine, because her neutropenic level was so high.  We were told not to have Katie "live in a bubble".  We followed that advise, and the result was Katie ended up in the hospital for 3 days and will be on 11 days of antibiotics.  I think we are going to let her "live in a bubble" - because going out was not worth the risk! 
     Last night, I about ripped the Home Health Care Nurses head off, when she arrived at our house at 10:10 p.m. instead of 9:30 p.m. like she was supposed to.  It is crucial that the intravenous antibiotics that Katie is on are given at exact times - she was supposed to have her antibiotics beginning at 10:00 p.m. and the nurse was to teach me how to do it before hand, because I will be doing it for the next 8 days.  So, her arriving at 10:10 was not okay!  A little Joy Nygren (my mom) came out in me last night.  I am just so tired of the incompetence we seem to be surrounded by.  This is my daughter's life we are dealing with.  I will not take it casually.  Scott and I have learned that WE have to manage Katie's health care.  WE have to take control and make sure that what needs to happen, happens.  (We still haven't had a chance to consult with the "new" doctor we are considering switching to.  Our appointment was cancelled by someone, somehow, because we were in the hospital.  Mind you, the hospital is connected to the building where this doctor works.  So, we were not able meet with him and he "couldn't" meet with us - during the 3 days we were in the hospital.)  Frustrating!!! (That is my word for the month - frustrating!)
     Scott and I are worn down and tired.  Our sweet, sensitive 4 year old, Conner, is having issues too.  He is acting out.  Last night, he drew on the bathroom counter, on Scott's reading glasses, and on the phone with a permanent marker (and then left the marker open on Scott's jacket and it leaked on it).  Then, this morning he walked off with Katie's poop sample (it might be kind of funny that I have a bottle of poop missing somewhere in my house, but I have a bottle of poop missing somewhere in my house!..No telling when, where or HOW we will find it!  Plus, I needed to take it to the doctor's office to be analyzed...  Then, this afternoon, Conner poured bubble bath on a material chair that belonged to my grandmother (1930's) - it was in Katie's room, he just walked in there and poured in on the chair and then he tried to hide it with a laundry basket.  Last week, he lost a part on my brand new vacuum cleaner - a part that is needed to make the vacuum work!  We can't find it anywhere - we fear it "somehow" got in the trash and is now at the landfill!  (Big sigh...)  Conner also had nightmares again last night, and every night before he goes to bed he asks me if I am going to be here in the morning.  I answer, and then he asks again, and then again.  He searches the house for me in the mornings.  When he finds me in the morning, he says, "You are still here."  Then he asks me if I am going to the hospital, if I'm going to leave him...etc... He is also throwing temper tantrums.  It breaks my heart that he is having such a hard time with this!  I know he is acting out because of everything going on with Katie.  So, what do I do?  Do I discipline him more, or love him more?  I have decided to do both. 
     Two years from now, we do not want to end up with two spoiled kids, because we were so focused on dealing with Katie's cancer.  However, I also do not want Conner to feel neglected or second best, because we had to focus so much on Katie.  We are trying to make special time with Nathan, Conner and Katie.  But the cancer rears it's ugly head and life gets crazy, we get no sleep, and it is hard to have the energy for anything else - discipline or fun.  It is hard to be consistent - with anything!  However, Life keeps going... Poop gets lost and "poop" still seems to fly around here.  So, it's a lot to deal with, but Scott tells me everyday that everything is okay.  Just one day at a time....But really, can tomorrow be an easier day?...Please!? =)  Oh well, I just realized tomorrow is Thursday and Katie goes in for her chemo spinal tap at 7 a.m., which also means I won't be here in the morning for Conner - and so it all begins again.  Then, each and every night ends with me handing my daughter a cracker with a crushed up chemo pill on it.  (There is nothing like serving your daughter a cracker with chemo on it each night before bed!) No fun. 
     When I was looking for a card today, I came across an old envelope with my name on it, written in my father's handwriting.  Inside the envelope was a small book of Christmas poems written by Helen Steiner Rice.  My dad always liked her poems.  I skimmed a few, but read this poem through.  It goes along with a quote my niece, Tebbanie, sent me this week.  Here are both.
HE WAS ONE OF US
He was born as little children are
and lived as children do,
So remember that the Savior
was once a child
like you,
And remember that
He lived on earth in the midst of sinful men,
And the problems of the present
existed even then;
He was ridiculed and laughed at
in the same
heartbreaking way
That we who fight for justice
are ridiculed today;
He was tempted...He was hungry...
He was lonely...He was sad...
There's no sorrowful experience
that the Savior
has not had;
And in the end He was betrayed
and even crucified,
For He was truly "One Of Us" -
He lived on earth and died;
So do not heed the skeptics
who are often
heard to say:
"What Does God Up In Heaven
Know Of Things We Face Today"...
For, our Father up in heaven
is very much aware
Of our failures and shortcomings
and the burdens
that we bear;
So whenever you are troubled
put your problems in God's Hand
For He has faced all problems
And He Will Understand." 
(Helen Steiner Rice)
     "The Atonement of Jesus Christ and the healing it offers do much more than provide the opportunity for repentance from sins.  The Atonement also gives us the strength to endure 'pains and afflictions and temptations of every kind,' because our Savior also took upon Him 'the pains and the sicknesses of his people' (Alma 7:11) Brothers and sisters, if your faith and prayers and the power of the priesthood do not heal you from an affliction, the power of the Atonement will surely give you the strength to bear the burden." 
(Elder Dallin H. Oaks) 
     Today I am glad for my dad.  (Was it a coincidence that I found that envelope today with Christmas poems in it, 4 days before Christmas?..and the poems saying things I needed to hear?  I don't think so.)  My dad always knew the right things to say and do to make me feel better.  He would take me in his arms and comfort me.  And even though my dad passed away 10 years ago, I belive he found a way today, to take me in his arms again to comfort me.  I miss him.  I needed that.  Thanks dad.

Day 41 (Tuesday 12/20/11)

     Monday night was my night to stay in the hospital with Katie...I wasn't as lucky as Scott.  Katie had a rough night.  She had a low grade fever all night and diarrhea (4 diaper changes).  Her tummy was hurting her all night and her cough is worse.  However, we were released from the hospital last night, about 7:00 p.m.  We were ready to be home. It was a long 3 nights and 3 days!  Katie will be on intravenous antibiotics for 8 more days.  A home health care nurse came over at 10:00 p.m. last night to teach us how to give Katie her medication.  We will give Katie her antibiotics intravenously 3 times a day, for an hour each time (6 a.m., 2 & 10 p.m.)  Katie will go to the clinic again on Thursday for her spinal tap chemo treatment.  She is also on a daily dose of chemo, in the form of a pill that we crush and give to her nightly.  I will write more tonight, I just wanted to catch up on yesterday.

Day 40

Anndrea asked me to write a small post tonight.  I spent the night with Katie last night and she slept most of the night, we are glad tonight for good nurses.  The man nurse last night took good care of us.   Katie received a blood transfusion this evening, she is not feeling well at all tonight.  I stayed home from work and spent most of the day with Anndrea and Katie, I think I needed it the most.  Could you please say a special prayer for Katie tonight? 
                                                        Scott

Day 39

     We discovered last night at 8:30 p.m. that Katie had a fever.  This is very dangerous for her for many reasons.  We called the doctor and were instructed to take her immediately to the emergency room.  We spent the night in the ER.  It was a very frustrating night - as Katie told me this morning - "you are frustrated".  (She has never said the word "frustrated" before, so I was surprised, but then realized I have been using that word a lot lately - so, not so surprising).  Anyway, long story short, It was a rough night.  They finally decided to admit us at 7:30 this morning, because they were unable to get Katie's heart rate lowered (we didn't get into a room until almost 10:00).  The doctor came in around 11:00 a.m. and told us that Katie's blood work came back and that she has some type of a bacterial infection.  Her ex-rays indicate possible phenomena.  (Of course it is the weekend and it is always hard to get definitive answers on the weekends).  
     The doctor told us we would be in the hospital for at least the next 48 hours.  They will be doing cultures to see what antibiotics work and will to continue to monitor her.  I don't know how she got sick...I thought I was so careful, and her neutropenic levels were high.  It doesn't matter, I guess, because she is sick.  Please keep Katie in your prayers.  Today I am glad things aren't worse than they are.  In the hospital room next to Katie's is a 13 year old girl who is also getting chemo treatments.  She was screaming off and on all day and throwing up.  When I asked the nurse what was wrong with her, she told me she was having chemo toxicity.  Which means her body got more chemo than her mind and body can take, and as the nurse put it, "she is nauseous and a little out of her mind".  My heart goes out to her and her parents.  I pray with all of my heart our sweet Katie will not have to endure something like that!  This poem is fitting my mind and heart today. 
"My spirit longs for Thee
Within my troubled breast,
Though I unworthy be
Of so divine a Guest.
Of so divine a Guest
Unworthy though I be,
Yet has my heart no rest
Unless it come from Thee.

Unless it come from Thee,
In vain I look around;
In all that I can see
No rest is to be found.
No rest is to be found
But in Thy blessed love:
O let my wish be crowned
And send it from above!"
(John Byrom)
P.S. Yesterday afternoon, I was trying to learn how to update Katie's blog and somehow a lot of her followers got deleted.  I apologize for that.  I don't know what happened.

Day 38

     Katie has the sweetest voice I have ever heard.  I don't think I am prejudice in saying that - she really does have the sweetest voice.  It is high, sweet and soft...I just wish I could hear more of it again.  She used to be a chatter box.  I miss that!
     I liked this poem I read today.  It is titled "Be Not Afraid" by Greg Olsen.  
"Like children who have lost their way
Alone and comfortless we wander.
Stumbling through woods that grow deep and ever darker,
With no direction, we cry for help
And hear our pleas echo through the canyons.
Is there anyone who can hear us?
Then, like a rushing wind, a voice whispers to our heart.
And through tear-filled eyes, we see an outstretched hand,
There to lead us home.
Though swirling streams may block our way
And slippery stones betray our feet,
He leads us on.  He knows the way, his feet are sure,
And in him we find safe passage."
     Today we are glad for a clean garage.  As stupid as that may sound, it feels good to get rid of the clutter and (as my sister says) "purge".  Thanks Scott & Nathan. 

Day 37

    Feeling tired and worn down.  In some ways things have gotten easier, but in other ways it has gotten harder.  Katie no longer moans and cries all day long, that is easier.  But it is so painful to watch her feel self-conscious about her lack of hair (and frankly, it is painful to see her without her hair).  It is painful to see her wanting to run and play like her brother, like she used to, but like she no longer can.  Time is painful - just the day after day of this - is painful...hard.
     Yesterday and today I have been on the edge of feeling sorry for myself, and on both days I have been humbled.  Yesterday, as we were leaving the doctors office I saw a mother with a boy about the age of 10, her son was in a wheelchair and his whole body was crippled.  Today the same type of thing, at the grocery store, a mother of a teenage boy in a wheelchair with his full body crippled.  My daughters condition is only temporary.  Her hair will grow back, she will walk again, and she will live.  I believe that (the odds are in our favor).  These other mothers, their sons conditions are permanent.  As difficult as our situation is, there are others out there whose situations are so much more difficult than ours.  My heart broke for those mothers and those boys.  I went and talked with the mother in the parking lot at the grocery store today.  She asked if they could pray for Katie.  I said yes.  To my surprise, this mother started praying for us, right then and there...and then so did her son.  It was very touching.  It was a sweet moment, where I felt like heaven and earth connected - right there in the grocery store parking lot.
     I have been amazed by the outpouring of love and charity so many have shown us - from family to strangers.  I have wondered, if the situation was reversed, would I have done the same - would I have done for others what they have so generously done for me/us?  I feel ashamed that I can't say for sure I would have.  Maybe that is why I needed to go through this.  I know my sense of compassion towards others has been magnified.  I hope I will forever after, be as charitable towards others as they have been towards us - family or stranger.
     Tonight we read 1 Nephi 1:20 "...But behold, I, Nephi, will show unto you that the tender mercies of the Lord are over all those whom he hath chosen, because of their faith, to make them mighty even unto the power of deliverance."  Trying to liken the scriptures unto us, I posed the question, "How has the Lord shown his tender mercies towards us?"  Without speaking, my husband answered.  He pointed to me, then to Katie, Conner and Nathan.  We have been blessed.  Things are hard, and I am hurting and sad, but I am also grateful.  Today I am glad for the tender mercies of the Lord (I am glad and grateful for Scott, Katie, Conner and Nathan - and everyone and everything that blesses our lives).

Day 36

     Long night...long day.  So, I am going to keep this short.  Katie went in for her procedure today.  She got a dose of chemo in her spine and a different dose of chemo in her port.  The nurse had trouble accessing Katie's port (not sure what the deal is with that) but that set the mood for the morning.  Things didn't go very smooth, but they went.  (Scott told me today that when they couldn't access the port at the hospital the other morning that the needle was bent when they pulled it out!)  This morning the nurse told me she thought the port had flipped over and we would have to go back to the surgeon.  However, they were able to access the port when Katie was under anesthesia, so...hopefully it is okay, and we won't have any problems with it.  I hope! (pray). 
     Our current Primary Doctor called this evening and said the board of doctors met to discuss Katie's case and that the consensus on what to do for Katie was not unanimous.  What does that mean??? I don't know for sure.  He said they didn't all agree, and blah, blah.  We are meeting with another doctor on Monday.  We will see what he says, as he was on the board as well...
    Anyway, Katie is doing fine.  She has complained of her back hurting from her spinal tap.  Hopefully tonight we will all get some sleep.  Today I am glad someone was kind enough to bring our family dinner.  We are so thankful for the kindnesses large and small that people have shown us.  Here is a quote my niece sent me.  "When you feel like giving up, remember why you held on in the first place." (author unknown).  Today was a day of just "holding on".

Day 35

     I am so tired!  Sleep, I need sleep!  Anyway, Katie went to her appointment today.  Her neutrophil count is at 1700.  Which is down from last week, but it still really good.  All her other tests came back favorable as well.  I hate that tomorrow is Thursday, and we will do the spinal again.  It is so painful to see her put to sleep and then waiting with her to wake up from the anesthesia.  (We have to do this every Thursday this month).  Tomorrow she gets a dose of chemo in her spine and a different dose in her port...and just as she was getting her strength back!  It is a bummer.  Last night, she actually played for the first time, in a very long time.  That was a joyful experience.  She was "making" us dinner and drinks in her play kitchen.  Katie was just getting her strength back.  She had started trying to walk again - which actually was hard and painful to watch.  It is not like a toddler learning to walk...it's like a paralyzed person relearning to walk...hard to explain...Anyway, it is good, but the 2 doses of chemo tomorrow are going to set her back again.  So, frustrating - especially for Katie!
     Katie is definitely becoming Katie again.  She likes our dog again (she wouldn't let Cozy come near her during her steroid treatment).  She is also letting her dad and brothers come near her again (she wouldn't let them come near her during her steroid treatment - that was very hard on her daddy) (and mommy).   She is sleeping with her baby doll again and is freely starting to pass out kisses to us.  I am taking advantage of it as much as she will allow!!  How I have missed her sweet hugs and kisses.  She is doing her best to make up for it though - I think she missed all the hugs and kisses too!  I love to hear her laughing again!!  As I said, sleep is still not coming and her face and tummy are still bloated, but in a week or two, hopefully it should be all out of her system.  We will be starting a new daily pill tomorrow.  This one shouldn't cause too many side effects.
     So, I had a few awkward moments with Katie's primary doctor today (and nurse), but it needed to happen.  I am not good at confrontation (unless I am really mad).  And, I am mad about what happened, however, I already knew our doctor was wrong in what he told us - and I knew he knew it.  So, my anger had abated some, but I needed to address it with him, it was awkward and difficult for me to speak up to the doctor today, but I did it.  However, as the doctor attempted to talk me into circles and skirt the issues, I just said, "I understand all of that, but what I don't understand is why you told us this..."  He started talking me in circles again, and again I stopped him and I said, "okay, but that is not what you told us, that is not what you said before".  He acknowledged that and admitted he had been wrong.  Okay, moment over, I didn't feel anything else needed to be said.  However, in the hallway I could hear the nurse conversing with him, and then he came back in the room with her in tow.  He bluntly said, "So are you going to be switching to Dr. Henry?"  I was taken aback, and I asked, "Where did that came from?" (...I had called the Phoenix clinic this morning and scheduled an appointment for Monday, to meet with Dr. Henry, to check out the Phoenix clinic. Apparently the Phoenix clinic called the Mesa clinic and told our nurse we were switching)...whatever...so, I just told the doctor and nurse that because of everything that had transpired, we had been researching doctors to see what and who would be the best "fit" for Katie.  The doctor we have been meeting with specializes in tumors, not Leukemia.  I told him if we decided to switch, it was because I need my daughter to be with a doctor/doctors who specialize in Leukemia.  Why would I want anything less for my daughter?  I wouldn't!  My daughter has Leukemia, I want someone who specializes in Leukemia.  We thought that is what we had...I'm learning.  Hopefully on Monday, I will finally have my daughter with the doctor/s she needs.  
     Today we are glad for insurance.  Our insurance company has already paid out $100,000 for Katie.  So, grateful we had good insurance!  Today my mind was turned to charity.  1 Corinthians 13:1-13.  I won't quote it all, just parts.  "Though I speak with the tongues of men and of angels, and have not charity, I am become as sounding brass, or a tinkling cymbol.
"Charity suffereth long, and is kind;charity envieth not; charity vaunteth not itself, is not puffed up,
"Doth not behave itself unseemly, seeketh not her own, is not easily provoked, thinketh no evil;
"Rejoiceth not in iniquity, but rejoiceth in the truth;
"Beareth all things, believeth all things, hopeth all things, endureth all things.
"Charity never faileth:
"When I was a child, I speak as a child, I understood as a child, I thought as a child: but when I became a man, I put away childish things.
"For now we see through a glass, darkly; but then face to face: now I know in part; but then shall I know even as also I am known.
"And now abideth faith, hope, charity, these three; but the greatest of these is charity."
Scott and I have not questioned the Lord WHY this has happened, or WHY us, or WHY Katie.  Instead we have questioned WHAT the Lord wants us to learn from this experience.  I believe I have my answer (at least in part today).  My life will never be the same after this.  I am forever changed.  I have a new found perspective.  I hope I will learn the lessons I am meant to learn from this, and become more full of genuine charity, which is the pure love of Christ.

Day 34

    To clarify yesterday's post, we still have to do the same amount of chemo and treatments, the full two years and two months worth.  It just means we will (most likely) be doing the Standard Treatment Plan, rather than the High Risk Treatment Plan.  Katie's results on the MRD coming back showing more than .01% means she would have been on the High Risk Plan and require higher doses of chemo, etc.. during the two years.  We are so grateful not to have to put more chemo in Katie's body than is absolutely necessary! 
     A large panel of doctors from Phoenix Children's Hospital will meet on Thursday to go over all of Katie's records and to "officially" determine her treatment plan.  It will be the Standard Plan (which as you know by now, is not what we had been repeatedly told, for the last few weeks, by our Primary doctor - we were told there was a proven Low Risk Treatment Plan available - that was the most appropriate plan for Katie - that would have meant even less chemo for Katie - ONLY problem is, that plan isn't proven and isn't an option)....So, as a result, we are once again researching doctors, because we are not comfortable with what has happened.  Who would be!?  I have researched online and have signed up for a cancer "support group" hoping, someone out there, who is a little further ahead of us in this process, can steer us to a great doctor in our area, dealing with ALL.  This is our daughter's life, and we want the best for her (or at least someone who knows what they are talking about).  (That may sound harsh, but that is our reality). 
     Katie's head is now a patchwork quilt of bald spots and peach fuzz.  It was a little alarming how much hair came out in the tub today.  I told Scott a week ago that I didn't think all her hair was going to fall out...looks like I was wrong.  (SIGH....)  But Katie is the proud owner of 22 hats, so she has plenty to choose from.  We still haven't rounded the bend yet with sleep, but I am hopeful we will get there soon.  The steroids are still very much present - Katie still has the "moon face" and distended tummy and her emotions are still swinging, but we are seeing more and more of our Katie each day. 
     Today I am glad that Scott had shoulder surgery just before this all began and that he is on light duty, so he is not working 24 hour shifts.  Right now, Scott works 10 hour shifts Monday - Thursday, and he is home every night.  I know I can make it through the day, because I know Scott will be home each night.  I am so grateful for him, his help, love and support!  I am also grateful for heavenly help, love and support.  "I can do all things through Christ which strenghteneth me." (Philippians 4:6-23)

Day 33

     WONDERFUL NEWS TODAY!  Katie's MRD test results came back at 5:00 p.m. and the results show Zero, none, nada, 0 Leukemia cells in Katie's bone marrow!!!  When we started, Katie's bones were 95% full of blasts (and that's bad)  Katie's bones are making marrow again.  That is excellent news!  This means the treatments have been working.  This gives us great cause for hope!  Katie is an "early" responder!  This doesn't mean were are out of danger, it just means no Leukemia is detectable.  There could still be a cell (or more) in our Katie's body, and she will still need the next two years of treatment, to ensure those cells don't multiply into to full blown Leukemia again.  So the next two years of treatment is still necessary, because even during treatment, the Leukemia could reappear at anytime.  BUT for today we will celebrate this great news!!
     The steroids are still very present...we had little to no sleep again last night.  Katie woke up, just as I was falling asleep and she couldn't seem to sleep the rest of the night.  She started having some "roid rage" at 3:00 a.m. so Scott and I drove her around in the car again.  The rage and insomnia should end soon.  We are ready! =)  Today was up and down, but we did get some good smiles.  We are ready for more of those...and kisses!
     Tonight my thoughts turned to these verses in 1 Nephi 4:1-3 "...and let us be faithful in keeping the commandments of the Lord; for behold He is mightier than all the earth, then why not mightier than Laban and his fifty, yea, or even than his tens of thousands?
"Therefore let us go up; let us be strong like unto Moses; for he truly spake unto the waters of the Red Sea and they divided hither and thither, and our fathers came through, out of captivity, on dry ground, and the armies of Pharaoh did follow and were drowned in the waters of the Red Sea.
"Now behold ye know this is true;...wherefore can ye doubt?  Let us go up; the Lord is able to deliver us, even as our fathers, and to destroy Laban, even as the Egyptians."   I don't doubt.  The Red Sea did divide hither and thither...and the Lord is able to deliver us, even as our fathers, and to destroy LEUKEMIA even as the Egyptians!  Praise be the name of the Lord!  Today we are glad for the number ZERO! =)
    
  

Day 32

     We made it to church today, as a family - it didn't go smoothly - but we were there! =)  We had some friends bring us dinner, which was great, because I didn't have anything planned or ready.  Today was a nice day.  Katie is doing a pendulum swing between herself and the steroids, but it is so great to catch glimpses of our Katie again!  We had lots of smiles today and even some laughter and talking.  I hadn't really realized that Katie had stopped talking - but she had.  It was so beautiful today to hear her sweet voice again!    
     I keep reliving what happened a couple of mornings ago, when we took Katie to the hospital for morphine.  (Remember she had her procedures the day before and had been hurting through the night.  We could not get her pain under control, so we were advised to take her to the hospital).  I was totally wiped out before we even got there!  At the hospital three nurses came into the room (I have no idea why it took three) to access Katie's port.  I held Katie in my lap, to restrain her, while one nurse watched and the other two "worked" on Katie.  One nurse put the needle in Katie's port, while the other was injecting saline through the access.  As soon as the nurse put the needle in Katie's port I knew something was wrong.  Katie started screaming and arched her back and was trying to get her hands out of mine.  I told them immediately that something was wrong, and that they were hurting her.  The nurse continued pushing in the saline.  Katie screamed more and I told them something was wrong.  Scott said it was okay - and I told him no, it's never been like this before.  I told them again, "Something is wrong, you are hurting her!"  The nurse holding the needle told the nurse pushing the saline to stop, but she kept pushing, Katie kept screaming, trying to claw her way out of my arms.  At this point I started yelling, "your hurting her, something is wrong, your hurting her!"  At this point, I was still restraining Katie, but Scott was having to restrain me!  I was so upset!  I knew something was wrong!  I must have closed my eyes and mentally checked out for a few seconds because the next thing I remember is the nurses throwing their gloves away and walking out of the room.  I looked down at Katie and her port was not accessed.  I asked Scott, "What just happened?"  He told me the access didn't work and they were going to have to try again.  AGAIN!  I couldn't believe it. 
     The nurses came in again a few minutes later with another nurse in tow (4 nurses).  They tried to explain what "might" have been the problem before, and said they were going to try again.  This time it took three nurses to work on her, while one watched.  (In the clinic, it is one nurse and me).  I told Katie they were going to have to do it again and she started crying.  Then I started crying and told Scott, "I don't think I can do this...I can't handle any more."  Scott offered to take her, but Katie cried louder, saying she wanted me.  The nurses asked if I wanted to leave the room.  I said, "If Katie wants me, I am going to be here for her, I can do this."  I pulled it together and things went quick and smooth that time.  I know in the big scheme of things that what happened wasn't a big deal, (not life or death) but I was (am) traumatized by it - and so was Katie.
    However, just to keep things in perspective, when the doctor came in, he said he understood how we were feeling, because he had a daughter who had Leukemia.  He said he lived in China when his daughter had Leukemia and they did not have the benefits we have.  In China the children did not have ports, so his daughter had to be "poked" all over.  In China they did not have the anti-nausea medicine, so his daughter threw-up all the time.  In China they did not give the children anesthesia when they did the bone marrow scrapes and spinal taps. ---I can't even imagine!  I don't even want to try to imagine, because as I said, I am already traumatized by what we are having to do - with the "luxuries" we have.
     Today I am glad we don't live in China!  We are so blessed to have all the medicines and benefits we have!  My quote for the day is, "If our lives are centered in Christ, nothing can go permanently wrong....if our lives are not centered on the Savior and his teachings, no other success can ever be permanently right." (Howard W. Hunter "Teachings of Howard W. Hunter, 1997, 40)

Day 31

     Our Primary Doctor called later last night and spoke to Scott.   He acknowledged that the treatment plan he had been discussing with us was incorrect (along with some other things he had told us).  That is very disconcerting!  What do we do with that?  Do we switch doctors again?  And switch to who? We are running out of options.  But then, how do we stay with this doctor and have confidence and trust in him?  We will have a meeting on Thursday with him to discuss this further (after we get the results of her most recent test -MRD-).  We again have some decisions to make. 
     On the bright side of things, because Katie's neutropenic level was up so high this week, we have been able to go out with her and do some fun things!  That has been amazing for us.  We have all enjoyed our time out together (including Katie's Uncle Scott, Aunt Janna and grandma GG).  The doctors said her high neutropenic level is temporary, but she will be able to go to church this week.  We will try to sneak in the back and sneak out before anyone notices.  The steroids played a part in this - so that is the one positive I can say about that.  However, the steroids have made this past month intensely difficult.  We are so glad we are done with the steroids.  We can already see the effects starting to wear off.  Katie slept all night last night!! (Only wish I had - I was hurting all night because of my bladder infection - and I am afraid I kept Scott up too).  Katie also smiled to today...she let me kiss her hand...and she actually repeatedly laughed out loud with me, when I was putting her down for her nap.  Laughter has never been so beautiful or sounded so sweet!!!!  It has been a month since we have heard a laugh from her.  It was wonderful to hear!  The steroids are still very much present and rearing their ugly head, but we are starting to get our Katie back! 
     We are so glad today for the help and time we had this week with my brother, sister-in-law and my mom.  We were sad to have to say good-bye to them today.  The scripture that comes to mind today is 2 Corinthians 4: 8-9, 15-18, 5:7  It reminds us that Mortal trials are nothing as contrasted with eternal glory.  "We are troubled on every side, yet not distressed; we are perplexed, but not in despair;
"Persecuted, but not forsaken; cast down, but not destroyed;
"For all things are for your sakes, that the abundant grace might through the thanksgiving of many redound to the glory of God.
"For which cause we faint not; but though our outward man perish, yet the inward man is renewed day by day.
"For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory;
"While we look not at the things which are seen, but at the things which are not seen; for the things which are seen are temporal; but the things which are not seen are eternal.
"For we walk by faith, not by sight:" 
Thank you for your continued prayers!

Day 30 (12/9/11)

     Due to technical difficulties we were unable to post this yesterday...but here it is.  Katie was up hurting throughout the night crying and hurting.  She kept saying, "owe, owe, owe, owe..." At 4:00 a.m. she willingly took 5 cc's of a liquid pain medication, which should prove how much she was hurting!  We haven't been able to get Katie to take liquid medication for anything.  So when she took it willingly, we knew how bad she was hurting (plus she is not a complainer and she has rarely said anything has hurt throughout this whole process - even if it does hurt).  We were unable to get her pain under control so we called the doctor and he told us to take her to the emergency room.  So we went to Phoenix Children's hospital at 6:00 a.m. and Katie was given some morphine. 
     We still haven't been able to talk to our "team" of doctors and get the discrepancies cleared up about Katie's treatment plan.  We are still concerned, frustrated and angry, but we should know more soon. My bladder infection is back with a vengance and I had to go back to the doctor.  And Nathan has broken out in hives.  So, we have reverted backwards a bit....apparently stress, lack of sleep, anger and so forth, don't help a body to heal (imagine that).  My mom gave me a good look over and told me I look terrible. She said "you have dark bags under your eyes, you need to get more sleep".  I could only respond, "Yes I do."  Then later someone came to the door and Scott answered - He was told he looked terrible and looked like he needed some sleep.  Honestly, I think we look worse than Katie at this point!  Cancer is taking a toll on all of us. 
     Today we are glad for pain numbing medication...just wish we could have all had some. (Just kidding!)  Here is my "medication" for the day. Psalms 23:1-6 "The Lord is my shepherd (my protection); I shall not want. 
"He maketh me to lie down in green pastures: he leadeth me beside the still waters. (peace and contentment)
"He restoreth my soul: he leadeth me in the paths of righteousness for his name's sake. 
"Yea, though I walk through the valley of the shadow of death, I will fear no evil: for thou art with me; thy rod and thy staff they comfort me (guide and support).
"Thou preparest a table before me in the presence of mine enemies: thou anointest my head with oil; my cup runneth over. (gifts and blessings)
"Surely goodness and mercy shall follow me all the days of my life: and I will dwell in the house of the Lord for ever."

Day 29

     I had wondered why they have kids on steroids for 28 days...why 28, not lets say 30 days?...well, I think I know the answer.  It is because on day 28, after 56 doses of daily steroids, your child is completely maxed out.  I don't think a child could endure one more day!  Last night was the worst night yet.  I did not even close my eyes once all night.  She was like a mad woman all night - I don't know how else to describe it - and I don't even want to try.  At 3:15 a.m. (after 4 hours of her screaming, crying, etc) Scott and I ended up driving her in the car until 6:00 a.m. (we tried stopping a few times, thinking she was asleep, only to have her start screaming and thrashing again).  At 6:00 a.m I got in the shower to begin the day, Katie managed to finally fall asleep, only to have me wake her at 6:30 a.m. to get her ready for her procedures today.
     Honestly.  I don't have one good thing to say about today.  I am beyond frustrated at the lack of competency.  I am ANGRY.  Please ignore everything I wrote yesterday about Katie's prognosis (possible low risk, treatment and survival rate).  Apparently I had that all wrong...oh, but not because I misunderstood.  Apparently our doctor misunderstood the other doctor, or the other doctor misunderstood our doctor, or one of them, or both of them, have absolutely no idea what they are talking about!  Which doctor is wrong?  Which doctor is right?  What treatment plan is available to Katie?  Who knows!?  Apparently they don't!  I am sooo angry!  We switched to PCH because we were told certain things.  We were reassured about certain things.  We have been given a treatment plan (and have repeatedly gone over it in detail with the doctor the last 3 weeks).  Now today the other doctor said that treatment plan (low risk) isn't even an option for Katie.  I am told our doctor misunderstood or doesn't understand...or something.  Our doctor's nurse calls and tells me the other doctor misunderstood or doesn't understand...or something.  We are told our doctor will call us...no call. 
     My brother wants to assure me that they all want what is best for Katie (and he is right).  However, it is clear, very clear, one of the doctors is very confused.  And that is confusing to me, because I was told they (the doctors) had consulted with each other and they had agreed upon Katie's treatment plan....but apparently not!  So, to sum it all up, we had been repeatedly told (assured) that, WORST case scenario, Katie would get the Standard Treatment Plan - now, today I am told that treatment plan is our BEST case scenario.  We are now waiting on a test to see if she is High Risk (which our doctor had told us wasn't even a possibility or concern for us - but now suddenly today it is).  WHAT!?  So, yes, frustrated, angry.  ---But my brother is right.  We will get this figured out, and whatever the treatment plan is, it is.  BUT my confidence and trust is GREATLY shaken! WHO do I believe?  WHO do I trust...with my daughters life?  I feel so completely helpless...with this and everything that is happening.  My daughter is hurting, I can't take her pain away.  She is sick, I can't heal her.  I can't seem to comfort her or help her...and every doctor I turn to, to help her...are they helping?  Do they even know what they are doing?  And yet, I am handing them my daughter and asking them to fix her.  I am trusting them, because I have no other option, but no doctor has earned my trust or confidence.  I am at a complete loss! 
     Today I am glad for a sister-in-law who reminded me tonight about a scripture in Mosiah 18:8-9. "...and now, as ye are desirous to come into the fold of God, and to be called his people, and are willing to bear one another's burdens, that they may be light;
"Yea, and are willing to mourn with those that mourn; yea, and comfort those that stand in need of comfort, and to stand as witnesses of God at all times and in all things, and in all places that ye may be in, even until death, that ye may be redeemed of God..."  My sister-in-law quoted this to me tonight, and tenderly said how she felt these words, and how she wished she could just take away a measure of Katie's pain, or my pain.  I want her to know that she and my brother have done just that!  By their being here and helping us through this, they have comforted those that stand in need of comfort, and mourned with those that mourn...and listened to a raging mother that only wants to help and protect her daughter.  I thank them for their service to us.  We thank all of you as well for your prayers and acts of service.  We are grateful.  Tomorrow is a new day and we will meet it head on - whatever the day brings.

Day 28

     Today was a great day!  We reached our first milestone, day 28, the end of the Induction Phase.  The end of daily steroids!!! (She will go on steroids again, but never again for this long).  It will take several days to a week for the steroids to wear off, but we are told when they do, we will get Katie "back".   Hopefully after this week she will not longer pick her lips or fingers until they bleed, no more multiple middle of the night snacks.  No more fits, screaming, insomnia!!! Maybe she will even let us kiss her again! 
     Today was a day of mini miracles.  Beginning with the fact that Katie and I actually got some sleep last night/this morning.  After her tests were run, we were told her neutrophil levels are way way up.  So for the first time in over a month, Katie could leave the house (and go somewhere other than the hospital or clinic)!  This isn't permanent, but we will celebrate it while it lasts!  We took her to buy some new pretty dresses (I still had her wear her mask as a precaution) and then we went out to dinner as a family.  It was so great to get out!!  My mom even went!  Like I said, today was a day of miracles. 
     Tomorrow Katie goes in at 7:15 a.m. for another spinal tap and bone marrow scrape.  Tomorrow, day 29, the beginning of the Consolidation Phase, is monumental.  The bone marrow and spinal fluid collected tomorrow will be sent off for a special test, MRD.  We will get the results back in a week.  The results of this test will tell us if Katie is a rapid responder or not.  If so, she will be considered "low risk" rather than "standard risk".  If she is low risk this will improve her prognosis from 80-85% survival rate to a 90-95% survival rate.  This will also determine the course of her treatment for the next 2 years.  No matter what, she will go through 2 more years of treatments, but the amount of chemo will be less if she is low risk.  So far, all indications are that she will be low risk, so we are hopeful.  Please keep Katie in your prayers tomorrow, as it is a BIG day!  The other great news is that other than her procedures tomorrow, Katie gets the week off.  No medications for the week!  This will give her a chance to get her strength back.  Katie has still not been walking and has been extremely lethargic.  The doctor said once the steroids wears off and with no chemo this week, Katie should be able to start walking a little.  That will be so amazingly great! 
     The scripture that kept coming to my mind today was Psalm 46:10 "Be still and know that I am God".  I acknowledge His hand in all things.  Today I am glad for Katie's great neutrophil levels, and to be able to once again take my daughter out.  A couple of weeks ago my husband "kicked" me out of the house and I went to Walmart.  I saw other mothers shopping with their healthy children and it tore at my heart.  Do you know how many times I had previously gone to Walmart and thought I was miserable because I had two rambuctious children with me?  How blessed I felt today to be able to shop with one rambunctious child and one not so rambunctious child, but still both were with me.  How gratetul I am Katie is still here!!  How blessed we are.  Thank you for your prayers in her/our behalf.

Day 27

     It's day 27.  Was there ever anything else?...it all seems so long ago.  I feel weary, yet strong - tired, but strengthened.  Prayer works, we are living proof.  Today was actually a good day in so many ways.  Scott's mom came and helped again today.  I had a couple of friends call.  Our friends, the Bigg's, had offered to paint Katie's "new" bedroom furniture for us, and they delivered it this evening.  Her room is finally coming together and the furniture is beautiful!  It makes me (and I hope Katie) happy to have her surrounded by beauty.  (Thank you so much to the Biggs and the members of my family who added to the makeover).   As great as the room is (and it is great) even greater was the arrival of my brother, sister-in-law (Scott & Janna) and my mom.  (As a sibling said, "She may not remember next week that she came, but you will").  I know it wasn't easy on her (or them) getting her here, but I am so grateful to have my mom.  I will treasure the time. 
     Katie still gets upset when she sees herself in the mirror.  It is crazy how many people in the hospital told us that children Katie's age aren't effected by loosing their hair.  I had my doubts about that, but I hoped they were right...they were wrong!  However, she seems to be adapting.  She picks out a different hat every time we go outside.  I am glad we have options to offer her.  The next couple of days are going to be hard.  We will be back at the clinic tomorrow for tests and on Thursday she will get another spinal tap, bone marrow check and a dose of chemo (sigh...)
      Today I am glad for family and friends.  We appreciate your support so very much!  -Even our "new" friends we haven't met, but who follow Katie's blog.  We are grateful for everyone who has taken an interest in our sweet Katie.  We have been blessed!  There are two scriptures that helped me today: "Live in thanksgiving daily, for the many mercies and blessings which he doth bestow upon you."  - Alma 34:38  "Be careful for nothing; but in every thing by prayer and supplication with thanksgiving let your requests be made known unto God.  And the peace of God, which passeth all understanding, shall keep your hearts and minds through Christ Jesus".  - Philippians 4:6-7

Day 26

     Thank you so much for your comments!  We posted two sets of new pictures today.  What a difference one month can make, but it will all be worth it if our Katie is healed and whole in the end.  Last night I think Katie and I averaged about one hour of sleep.  Thank goodness for Scott's mom, she came and helped today, and Katie and I were able to get a little more rest.  I am feeling the effects of it all tonight - and I just had to apologize to my family for snapping at them.  That is not how I want things to be.  I know I need to find a release, but Katie can't walk and she can't go anywhere except to the clinic.  And if Katie can't go anywhere, then pretty much I can't go anywhere - Scott's back at work and when Katie naps I need to nap.  And if I do go somewhere, it is Christmas shopping (not the most relaxing) but I know things will get better.  We have been told the first 6 months are the hardest - and we are almost done with our first month.  So, there is a glimmer of light ahead...
     It is too hard tonight to focus on what was hard today, so I will focus on what was great today.  Lots of support.  Scott's mom cooked, cleaned, did laundry and lent moral support.  Someone brought a gift by for Conner and Katie (and took the time to walk and talk with us).   Someone brought over Kentucky Fried Chicken for dinner.  We got cards and gifts in the mail (thank you to my nieces and nephews - Tebbanie, Jordanne, Ryan and Tyler).  I would like to send out a special thank you tonight to the person who anonymously sent a beautiful card and gift.  The card brought tears to our eyes.  I would like to quote the card: "Lord, Sometimes life is hard to understand.  And even when we trust You, our hearts still ache.  So I ask that You would bring Your comfort and strength to this one who is facing a difficult time.  With each step she takes, may she feel Your presence with her.  When she is weak, hold her up.  When she is tired, carry her.  Show her Your love in new ways each day, and remind her of how much she matters to You and many others."  (Thank you to this gift giver - Katie loves to wear dresses and to look pretty - she has outgrown most of her winter dresses...so, she will be so excited to get some new dresses - thank you for your generous gift!) 
     Christ's hands are our hands.  I believe the Lord does hear and answer our prayers, but often it is through others that he meets our needs.  - The Lord has heard and answered our prayers, and our needs have been met, through all of you who have reached out to us!  We are so grateful!  Today we are glad for ministering angels, seen and unseen. 
    
     

Our Christmas Pictures

Our Christmas picture 2011

Wanted this to be our Christmas picture, but Nathan had that big reflective dot over his head... These pictures were taken a week after Katie's last chemo treatment and a day after receiving a blood transfusion and 2 days of IV fluids.  Katie looks GREAT - you wouldn't even know she was sick (in these pictures).  These were just taken about 9 days ago...what a huge difference 9 days can make when you have cancer and are on chemo and steroids....what a difference a month can make! 

Pictures: Katie's New "Do"

Reflections in the mirror

"THE" haircut

I don't know who looks more upset...Or tired!

Difficult day

Puffy faced from the steroids

Still our pretty little princess