[cathybee1]

Sorry I haven't been on for a while...stuff has been happening here.

First, Chirley, I am so so sorry about your uncle. I'm glad you could be there for your dad. I hope that this time away from daycare will be restorative for you psychologically and that you can enjoy the summer with your pups. I so wish that there were some better choices for you.

Bruce decided to not try the suggested pharmaceuticals. The odds the specialist in L.A. gave for Revlimid or Vidaza working were pretty low, and the immunosuppression side effects of both drugs pretty daunting. So Bruce wants to continue with transfusions.

Bruce had his liver biopsy 5 days ago in a hospital (with conscious sedation thank goodness). The biopsy is being evaluated for both iron and copper. The hematologist called today to say that preliminary results of the iron testing indicate that Bruce has moderate fibrosis in the liver which the hematologist said were due to iron deposition. I wasn't here when Bruce got the call. Bruce told the hematologist he wants to go ahead with a trial of Exjade as soon as all the insurance paperwork allows.

The good news we got today is that Bruce had bloodwork in hospital before the liver biopsy at which time his hgb was at 9.1. Today, he had another blood draw, and his hgb was at 9.4. Different labs but it has been a month since the last transfusion, and it was a pleasant surprise that his hgb levels are still holding. The other pleasant surprise was that the MCV levels are still near normal.

Bruce has had no IV copper since before Christmas. The blood draw today was the first testing for copper done in a month, and we won't know where those levels are at for another week.

For now, Bruce continues to feel well, and yes, we are grateful for our blessings too.

Hugs to you