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)