[Wife of Diver Down]

Thank you all for your responses. The doctors here were trying to taper the steroids and keep the Tacrolimus level low in hopes of a possible GVL benefit. Unfortunately the skin GVH was getting more severe and exfoliation followed; 10 d ago it began to involve his oral mucosa and lips - unable to eat. He was therefore readmitted last week and started on IV steroids - Solumedrol 40 mg twice daily and the Tacrolimus increased to get his level up to 12. He responded well and is now eating 2300 calories a day and his skin though still severe is significantly improved. He is looking much better and felt well enough to get out of bed and walk in the hall of the unit today. Unfortunately this treatment has compromised the underlying persistent MDS and he is now requiring very frequent platelet and RBC support. I don't know where to turn or what to do- The team here is afraid to add Vidaza or other chemotherapy for fear of placing him at higher risk of infection and risk of aplasia. I don't know where to turn.

I love him so... we just "celebrated" our 29th anniversary last night...