Be not weary

Nicole had clinic today.  She is now 42 days post transplant.  Things are going according to the textbook.  Her blood counts are holding their own.  They are not perfect but they are holding steady.  We are going to start to taper down her anti-rejection medication.  This is when it gets a little scary for us.  Hopefully, she will not get any GVHD.  We will need to watch closely for signs of rejection.  In two weeks Nicole will be getting four weeks of lp or chemo in her spine (it will all be out-patient). They want to be sure that they get all of her leukemic cells.  This is protocol with patience who relapse with leukemia in the central nervous system.  Once Leukemia been in the brain it's hard to be sure they got it all.  The leukemic cells like to hide in the brain.

It's been a long few weeks.  Nicole spends most of her morning throwing up (It is just part of the healing process for her).  Most morning we just start the day throwing up.  Some mornings she throws up her feeding tube.  I tell most people that she throws up once a day.  But in truth she throws up for at least an hour or two every morning.  We spend most morning sitting in our room together just waiting for this period of the day to be over.  Then when she is finally done we get cleaned up, put her feeding tube back in, slowly start giving her meds she needs in the morning (it takes about an hour to just give her medication).  We start laundry and cleaning up from the morning. She then goes about her day if nothing happened and I am ready for a nap:)

I have had so many thought go through my mind this week.  I wish I could truly express the feelings of my heart.  I don't know if people really want to hear.  In the pass when I have shared feeling or lessons I have learned with people they have been offended and not truly listened to how I felt or what I was trying to say.  They have been quick to judge.  When you have walked down a road when you are fighting to save your child life you change, you see things differently.  The gospel takes on new meaning.  One thing I love about the scriptures is that each time you read a verse you learn something new.  The spirit is teaching you what you need to learn right now.  This week the scripture that keeps coming in my mind is Doctrine and Covenants 64:33 "Wherefore, be not weary in well-doing, for ye are laying the foundation of a great work. And out of small things proceedeth that which is great."  Each day as I get tired of washing sheets. I think "be not weary in well-doing"  Or each time someone does a small act of service. I think "of small things proceedeth that which is great".  Each time this scripture comes to my mind I feel my savior love encircling me, to strengthen me to continue with the day to day task of helping Nicole heal.  How grateful I am for the strength of the scriptures and the words of the modern day prophets.   

Michelle and Nicole hanging out

Nicole at clinic today