Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: April 14, 2002

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BMT + 12

Today was a very up and down day. My cousin, Tammy found another Will Smith she is mailing to us. Robert’s counts are up. His WBC doubled from .2 to .4 and his neutrophils were higher. Dr. Horn said this was very good news. She said if everything continues positively, she will run an engraftment study next Monday to check to see that it’s the donor’s stem cells are starting to grow. This is all great news.

Unfortunately, we are not out of the woods, while G’Ma was here, Robert spiked a fever of 39.3 (about 103) and they decided to start him on the anti-fungal medicine, amphatericen. This drug can cause tremors and of course, Robert had tremors and his temperature has remained higher than it should be. His respiration rate and heart rate are also up. This is common with fever but doesn’t make it any easier to see. I can tell Robert feels awful tonight. His alarms go off every three minutes.

Counts:

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