Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: August 10, 2001

Robert’s Update BMT + 22

It is now official; Dr. Horn said Robert might go home next Thursday. Even though she has that strong German accent, she says Thursday very clearly.

Robert’s white blood count went from 600 yesterday to 1400 today. It was too late in the morning when the doctor found out to order the blood test to check whose blood is growing in Robert, the donor’s or his. They will take the blood for the test on Monday and it will take about a week to get the results. Kara, our favorite nurse said it takes a lot of blood for that test, enough to fill his whole hand.

Robert’s ANC (absolute neutrophil count was 890. To go home it must be over 500 for three consecutive days. Robert’s platelets are 41 so he won’t need a transfusion today.

Robert has been having really bad diarrhea and has a yeast infection going on his rear end. He also may have thrush in his mouth. He did not eat very much today. Grandfather Fred says this is all pretty common when the white blood count starts increasing. Aunt Michelle, Uncle Robert and Sophia came up this weekend to help watch whichever kids are at home. Tonight, Mark, Mom, Dan, Robert, Michelle and Judy were watching Matthew. I know he is quite a handful but I am not sure all the adult attention improves his behavior. Rumor has it that Matt put his head under the water for the first time at swimming today.

Marie and Allyssa are going to come home tomorrow and we can hardly wait. Grandma Jody helped Marie get her ears pierced again. Hopefully the third time is a charm.

Today, Uncle Dan came up to watch Robert while I took a walk outside. It was beautiful outside. If you are going to have a bone marrow transplant in San Francisco you may get very few pretty days in the summer. As Mark Twain said, “The coldest winter he ever lived through was a summer in San Francisco.”