Day 545

      Katie had her appointment at the clinic on Thursday and the doctor increased the amount of Katie's daily chemo pills.  We were expecting this (but not wanting it).  Katie has been doing "too well" the past couple of months.  She has been too strong and her numbers have been up.  This happened one time before, and we had to increase her chemo.  However, this time they increased her daily chemo by 25%.  That seems like a lot!  Katie also needed to get an IGG infusion, because (ironically) those numbers were too low.  (The IGG infusion takes several hours, so it made for a very long day at on Thursday).  The IGG infusion makes Katie have flu like symptoms - and she is also back on steroids - plus the daily increase in her chemo - and the chemo she got intravenously on Thursday - it has all taken it's toll on her.   
     Yesterday and today Katie has been saying things like, "I am having a hard day" or "I am having a hard time."  It is hard for us to see her like this.  We knew she wouldn't make it through church today, so I stayed home with her.  Katie asked to go on a walk around the block.  I thought ahead and brought the stroller - Katie only made it as far as the neighbor's driveway and then asked to ride.  When we got home she said she was tired and wanted to take a rest (it was 10:30 a.m.).  She is still sleeping now.
     Every month Katie takes a 5 day high dosage of steroids, and she always has certain cravings during this time.  Most of the time she craves bagels and cream cheese (mostly the cream cheese!).  Although, she also seems to continually crave whatever she first "desires" at the onset of the steroids.  This time it has been hot chocolate.  It is 95 degrees outside and she is drinking hot chocolate multiple times a day.  I know it comforts her, and I am glad she can have something she enjoys!  Another interesting thing about the steroids (and it has been this way from the very beginning for anyone who might remember) is that Katie only wants Mommy during this time.  She doesn't want anyone else to help her with anything - anything from holding her to turning on the TV, getting her a drink, taking her upstairs, etc...  She doesn't want to let me out of her sight.  Sometimes when she isn't tired, she will let her Daddy help her, or hold her, but for the most part it is Mommy.  I know it kind of bothers Scott (because he wants to do for her), and sometimes it is hard for me, but for the most part, I am so glad she wants me and I so am glad I can help her.
     It has been a long road and we still have a ways to go.  It is strange how I have felt the loss of support since Scott's mom has been hospitalized.  I don't know that "loss of support" is the right wording - it is more a feeling of a loss of security - just knowing she was there to help us, if and when we needed help.  Scott's mom has been such a source of help and comfort to us.  She has always been a caregiver for so many.  I know that as hard as things are for her physically, she is probably also suffering because she can't do - give - help.  I wish I knew better what to do for her and how to help her.  Her stomach is still shut down, and so she is still unable to eat or drink.  She is on IV fluids only.  I feel so bad for her (her name is Marie by the way) and I feel bad for Scott's dad.  This was not what any of us were expecting at this time... But life has a way of challenging us with the unexpected.  We will simply do our best and carry on.  - Which reminds me to mention the corn starch - it is yucky for her, but it seems to be doing it's job of helping Katie's blood sugar stay stable throughout the night.  So, onward and upward.  President Dieter F. Uchtdorf said, "As we draw near to God, He will draw near to us. And day by day, the hope of God’s light will grow within us, 'brighter and brighter until the perfect day' ("The Hope of God's Light").