Monday, October 7, 2013

Increased pain

Hello to all,

As always, we sure do appreciate your prayers!

Derek has had increased pain in the last couple of weeks.  He is on a tylenol / ibuprofen regimen with maybe one daily dose of a narcotic.  Of course, this has to be timed so that he doesn't drive 6 hours after taking it.  The pain is generally in his head and shoulder area, but many times is taken away by the medicine.  I'm so thankful for pain meds!  His legs have become weaker, causing him to move a lot slower.  This, however, does not slow down his desire for fellowship including us visiting others and others visiting us.  We are so encouraged by being with others.

We've received the Votrient (the next chemo drug prescribed) in the mail, and it is covered by insurance (big plus).  He has not started taking this drug, because in the mean time we heard of a clinical trial he may qualify for in Maryland.  This is run by the National Cancer Institute and is trial #08C0121.  It is specific to cancers which have spread beyond their original site and are not responding to treatment.  The first steps here are to see if Derek is positive for the HLA blood test marker A0201.  If he is, we can proceed to see if his tumor presents with the NY-ESO-1 protein.  If it does, then we can proceed to a 2 week initial screening visit to Bethesda, MD.  We are awaiting these first steps.  In order for him to be entered into the clinical trial, he has to be OFF of chemo drugs for 1 month prior to starting the study.  This is why he has not taken Votrient yet. The clinical study is ran by Dr. Rosenberg.  Here is a link detailing the study:

Also, part of my time has been devoted to obtaining a van (equipping it with a lift), powerchair, and discussing ramp options for our house.  My goal is to keep Derek as independent as possible.  He still loves his job, and is able to work at least half days.  He claims he can't remember as well and processes things slower, but in reality he still does just fine.  He keeps me in line!

We've enjoyed a couple weekend trips, church, finishing up the gardens, watching the pipeline come through the fields to the north of us, wiener roasts, and teaching our kids.  Lexi is still loving to read.  She's really improved on piano this year, and makes a few dollars "babysitting" Lainey while I get other things done.  She and Wesley have joined a choir this year, and I love hearing them practice singing in the van.  Wesley is using his slingshot to hunt, playing more baseball for fun, and he turned 8 last week!  Whitley is in preschool, and she can't get enough letters and numbers right now.  Lainey isn't quite walking yet, but she makes her requests known.  Her newest thing is climbing up on tables.  I'm thankful we are all sleeping quite well.

My Jesus I Love Thee, I know Thou Art Mine.  I'm so thankful for His shed blood that by believing we have eternal life.



  1. Thank you, Leann, for the update. You continue to be in my prayers.

  2. Continuing to pray for all of you that God will hold you in the palm of His hand! love Jon & Marla

  3. We continue to lift up all of you in our prayers. Thank you for sharing this update.
    Emily Baum