Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: September 3, 2001

Robert’s Update BMT + 46

Robert’s white blood cells and neutraphils were lower today, but still at a safe level for him to leave the hospital. This is because he didn’t get GCSF yesterday. However, his platelets were up slightly, so his bone marrow seems to be in good shape. The consensus now is that his bone marrow is not under immediate attack, and he should be able to come home this week regardless of the results of the engraftment studies. We will have to continue to do regular blood tests at home, but this is normal for BMT patients. Robert was taken off the IV today, so he will not need it at home. He has been feeling very good, and a number of the nurses in the unit said they could hear him all day long.

Both Kathleen and I got to spend the day with the other kids, thanks to Robert’s uncle Dan, who put in a long day watching him. It was great to be together as a family for the day, and we are really looking forward to have Robert joining us. We will have to continue regular oral medications and blood draws at home, but both of us feel ready for this.

Thank you for your continued good thoughts and prayers.

Best regards, Mark