Robert’s Road to Recovery Journal
Presented by the International Society for Mannosidosis & Related Diseases.
Kathleen’s Diary: July 14 2001
Robert’s BMT-5 Personal Information
Robert’s medications changed today. He started a new medication today, Fludarabin. This medicine will kill off his immunities. He has finished taking his busulfan.
Robert still doesn’t have much energy but does have an appetite. He ate 6 chicken McNuggets for dinner last night and then three fruit roll ups. The fruit roll ups were an incentive to get him to take the oral medications. Today, he kicked one right out of my hands and onto the floor. The nurse had to draw a new one.
Robert was so hungry this morning he asked for a second bagel. I had one in the antechamber that I bought in the cafeteria but I couldn’t give it to Robert because it hadn’t been wrapped in plastic before arriving here. In fact, two meals had to be sent back to be repackaged.
Nick is with his dad today. Uncle Dan is taking Marie, Allyssa and Matt to the Jungle and Mark is in a planning meeting for work. Marie and Allyssa are going to Grandma Hedda’s next week. Marie will get to celebrate her 12th birthday at Grandma Hedda’s. I think this is nice for her and for us.
Robert is currently watching Flicka. He loves horses and there are plenty in the movie. Hard to believe the movie was filmed in 1943 and that Roddy McDowell has not changed one bit. Maybe this movie is where he learned his love of animals and took it onto even better things like “Planet of the Apes”.
It is now almost 6:00 p.m. and I have rewound the dance scene in Angels in the Infield 8 times. Robert is getting pretty good as saying “again” very clearly. He also says, “Just do it” just like the angel at the beginning of the scene. I wonder if he can beat Julia’s 35-time record. Will the tape last? If any of you have not seen it you must rent it and you will know exactly which scene I am talking about. I wonder if he will still want to watch it as much after the BMT. Is it just a King/Stark thing or does it affect all children the same way? Uncle Robert should negotiate his contracts based on how many times children watch certain scenes. I think he could make more money. If it wasn’t such a great scene I could type more but I have to get up again and rewind.
