Day 232

     Last night was not Katie's best night, and she still wasn't quite herself yesterday, but she was better than the day before.  Today started with a tummy ache, but hopefully as the day goes on she will feel better.  We are always glad for the feel good days. 
    Our next appointment at the clinic is on July 11th, to start Katie's last phase called "Maintenence".  Katie starts off the Maintenence phase with a spinal tap (where they take spinal fluid out and put chemo in) and she will get two doses of chemo in her port.  During Maintenence Katie will be on a daily chemo pill called 6MP.  She will also take 5 Mexotrexate chemo pills every Friday (in addition to the 6MP) - both medications are to be taken on an empty stomach with no citrus or dairy.  So, every morning when Katie wakes up, she will take 1 to 6 pills and have to wait an hour before she can eat or drink.  We aren't quite sure how we are going to manage that!  Katie will also go to the clinic once a month and get two doses of chemo.  During this phase, they will be "poking" her in new places, as they are wanting to try IV's in her hands and/or arms so they can remove her port as soon as possible.  (Removing the port will require surgery).  Katie will also be taking steroids twice a day for 5 days each month (so monthly we will be dealing with the effects of the steroids).  Katie will also be getting a spinal tap (with chemo) every 3 months.  She will take an anti-nauesa pill on an as needed basis.  --This will be our new-new norm for about the next year and a half.
     The good thing about Maintenence is that after the first month or two, they say her levels will stabalize more, with not so many ups and downs (at least not so high and low).  They say her risk for life threatening complications lessens (especiallly after Katie's port is removed).  They say that "generally" the chilld's hair grows back and most likely will not fall out again (although it could).  They also told us one of the most difficult parts of being in Maintenence is that when Katie's hair grows back and she starts feeling better, that our friends and family will all think (and say) that everything seems fine, Katie seems to be doing great - and expect us to feel and act the same - but the reality is, we will still have a daughter with Leukemia and there will still be a lot happening at home that others can't and won't see.... 
     At this moment it all still seems overwhelming to me.  Katie is going to start going to church again - and start preschool - our life can resume some normalicy - but it still sounds hard and difficult and a lot for Katie to continue to go through.  I hope as we get further into Maintenence things will seem easier or better (like they keep saying it will) (although this last time, they did tone it down, saying they didn't want to build up Maintenence too much because they didn't want to give us too high of an expecation - because there can and will be some complications and difficulties).  So.... that basically sums it up.... we are headed for Maintenence (which will continue until January 12, 2014).  We will take it as it comes - one day at a time. 
     "The Lord puts challenges in your path to mold your character.  For your own personal growth He will often let you struggle with a matter for a while, even when you are pleading for help.  But as you follow true principles, He will finally see you through.  He intends that when you have reached your extremity, you will turn to Him for comfort, peace, and assistance.  He will send these through the quiet prompting of the Spirit.  He will give reassurance and guidance that are essential to correct decisions in your life.
     "You are learning powerful, eternal lessons.  Be sure you understand them.  The Lord does not abandon your urgent pleas, nor is He ever, for even a moment, unmindful of your anguish and heartache.  He hears every supplication.  He invariably answers according to spiritual law.  Understanding that law will help you appreciate how the Lord answers your prayer.  His slicence and seeming absence at times are a powerful means to expanding your vision and understanding as you continue in faith to do your best."  (Richard G. Scott, "Making the Right Choices" (CES fireside for young adults, Jan. 13, 2002),