Apr 30, day +91 freedom bound second time around

"Just the facts"-- blood levels are improving again,
Chem levels are improving as well. Last day for IV meds! Hair growth is slow going.

It's been 5 days since I last updated B's activity. We have had a lot go on. First, I'm not sure I mentioned last post that B had a crown pop off, well we got that put back on. Putting it back was easier than all the prep. B had to have extra platelets, a note from the doctor to the dentist and take a large dose of an additional antibiotic. The crown was the simple part, but it could not have waited, as B's dry mouth has turned into full blown GVH of the mouth. Ugh. This is very similar to the body rash but in the mouth, in a wet environment, you can just imagine. We are back to bland soft food for a time until we can get this to back off. This development has once again added a new medicine to his routine. This one is for the mouth, a special medicated formula for the mouth used like a mouthwash. We also just found out that he had GVH of the liver! This is in part, why we have been at infusion every day. Those levels are finally getting to normal and we have been given a release from coming here every day. Actually we get tomorrow off for the first time in over 2 months! We are very excited about this.

We keep a close watch on the hair growth, but its like watching grass grow. I should be taking sequence photos of the growth, but that is just to complicated for me right now. In the mean time B has grown a mustache and hair just under the lip. He is so excited about this hair growth. He says that he is not shaving this off till all his hair comes in, it could be a while. He can take on several new looks, non of which any of his friends recognize. Several times he will be walking, say hi to someone he knows and they say hi and walk on not recognizing him. Oh well, just as well because the delay in the walk or the extra conversation will take any extra energy he has. B weighs 147 lbs as of today, so the ice cream is doing it's work! If only I could be on that diet.

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.