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.