Memorial Day

I hope everyone had a chance to remember our fallen heroes today and the holiday was not just lost in burgers and family cookouts - although those are great, too!  We were in Richmond for the last day of Chris' volleyball tournament and I saw some of the coverage of the ceremonies at the War Memorial on TV.  Actually I was in clinic while Brant and Katie were down the street at the Convention Center with Chris.  We had a really nice 3-day weekend in Richmond with the other volleyball families, and it made my commute to clinic on Sat and Mon very quick!!

I know I haven't posted in a while.  It has been an up and down time for me. We have been in Richmond WAY too much over the last two weeks and the kids have had very busy schedules, too.  I am behind on my own personal journal, which I really like as a daily reference as to how I was feeling, what the docs changed, what the family did, etc.  As many of you saw on FB, we lost a good friend in the transplant program last week, and then later in the week I found out another has been placed in Hospice with not much time left.  It just really takes the wind out of your sails as you try to get up each day and fight to be positive.  Especially when you are having issues of your own.

My blood counts are not as high as they were last month and my platelets have really fallen.  I am back to getting platelet transfusions every day or every other day.  I was able to do my two days of photopheresis last week on Wed/Thurs.  My WBC count hung in there at 2.0 on Day 1 and 1.8 on day 2.  It wasn't too bad.  Just lots of sitting.  After photopheresis on Thursday, one of the Dr's told me they have seen some blasts circulating in my blood for the last three samples - could be leukemia....could be something else......  They sent off for more special tests but due to the holiday weekend I have no results.  They are trying to move up my biopsy to this coming week.  The medical team has pretty much said they can't tell me what is going on until we have good biopsy results.  So we will try to give all those worries to God until that point at which we have information to know what is happening.  "Can anyone of you by worrying add a single hour to your life?"  Matthew 6:27.  And until that point, back to our motto - we need to try to enjoy each day as it comes.

I am down to 30 mg of prednisone now and should be completely done in 2-1/2 more weeks.  Donuts and Oreos are much safer.  They are tapering me down quickly in case it is suppressing the bone marrow and/or the immune response of my donor cells to kill leukemia.  I have felt so tired and achy - especially after photopherersis - and have used a lot of Tylenol and had low grade fevers.  The nurses told me that it is not easy coming off of prednisone as you own body has to ramp back up making cortisol.  So it was good to hear a possible explanation other than leukemia which is always where my mind always tends to wander...... 

I went to clinic to get repletions today and needed blood and platelets.  I spiked a temperature of 102.6 in clinic but it came down with Tylenol.  That earned me two bags of IV antibiotics and a return trip to clinic tomorrow.  Door #2 was getting admintted...... We went with Door #1. By the afternoon I felt much better and have had no fevers or aches to speak of.  I enjoyed sitting outside for a bit today in the evening shade and looking at our plants.  It really was a gorgeous weekend.

We ask for prayers of peace as we wait out a few more weeks of uncertainty.  And we are always trusting that God is bigger than this and will see us through.