Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: April 22, 2002

BMT + 20

Robert was more uncomfortable today, and his rash seemed worse. He also had a slight fever in the evening. His liver blood proteins were actually improved slightly, except for GGT. The doctors were not too concerned with the blood tests showing some reduction in kidney function, because that may have been caused by either his medications, or it may be due to some dehydration. Robert did have a lot of diarrhea today, and that may have lowered his fluids. There was also a fair amount of blood coming out, as well; so he needed two platelet transfusions today be ready for the TPA treatment tonight.

The doctors now think Robert probably has both VOD and GVH, and they are treating both. Most children recover from these diseases, provided they don’t progress to a severe stage. Robert is not at a severe level, so we are hoping to see reversal of symptoms. Obviously, this is a very frightening time for our family, and we appreciate everyone’s support, prayers, and good wishes.