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.