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.