Apr 24, Day +85 Happy Easter!

"Just the Facts"--  Had a pretty good day, weight is stable at 145, rash seems to be backing down again. Energy is hard to keep consistent.

It has been an interesting few days, since I last wrote.  The improvements seems to inch along.  We have been focused on this one drug that doesn't appear to be working.  It is a different manufacturer that the first prescription we got.  This drug is suppose to keep the GVH rash at bay, but while it is not registering, the rash has been coming back a little bit each day.  This first thing we do in the morning is check to see how red B is.  He says it is like having a sunburn.  Well we ran out of this drug and got a refill, this time another manufacturer, and wouldn't you know after one days dosage, the rash is retreating.  As of now, a couple days later the rash continues to retreat, so we are sure that the other manufacturers drug doesn't work.  As the rash retreats, B works on getting his energy back.  It is hard and he needs to focus.  Any activity he does, draws from a very small resource and empties it.

One of the many side issues for BMT patients is GVH of the mouth.  Because of this possibility they insist that all patients make sure they have their dental work done prior to this treatment.  We did this before B went into the hospital.  And till now his mouth has done great.  But with the drug to prevent this not working, this has allowed an open door for some mouth GVH.  Small fleshy sores inside.  Also with all the drugs a patients tends to get "dry mouth".  This is fairly common things for patients on lots of meds.  This particular side effect will complicate GVH of the mouth as well.  So just in time for the refilled prescription of the working medicine to kick in and reverse the mouth GVH.  But in this process B lost a crown off one of his molars.  So to go to the dentist we have to schedule so that he is filled up on platelets, takes an anti-biotic prior to his visit and I have a prescription from the BMT doc to the Dentist.  They have to just be really careful with their work.  We are hoping the sores retreat enough so that when the dentist works on the tooth, they are not bothering the sores.  Boy, could this guy just get a break!  In spite of all the issues, we had a good weekend, were blessed in many ways by family and friends and by the gift of Life! Happy Easter to all.
Until next time,
Hopeful Believer.