Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: April 19, 2002

BMT + 17

It was a very tough day for Robert. He has been cycling through some very high temperatures ( 39.8=103). I counted four times today and four times yesterday. It starts with a rise in temperature, nausea, high respiratory rate, high heart rate, high blood pressure, higher temperature, and then very high blood pressure (150/105). His blood pressure was so high tonight the resident thought about moving Robert to ICU. Fortunately, with amlodopine and niphetapine his blood pressure did come down. Also, Robert’s lungs did sound a little crackly tonight. Robert tried to be cheerful but had a hard time of it. I could see a huge difference when he was without temperature; he even got out of bed to see what Aunt Michelle sent him today (he thinks Aunt Michelle’s last name is Amazon).

The biopsy came back negative for GvH which just goes to show how unreliable the biopsy is. Now that we have the results, his doctors are starting him on GvH medication to help his body fight it. They are also taking him off one antibiotic and putting him on two others. The dermatologist said the serious skin rash could be an allergic reaction. They are changing his anti-siezure medicine in case he is having a reaction to it. They are leaving him on the dreaded ampiterasin (anti-fungal medication) but they changed the prescription to the very expensive version (50x the other one).

The doctors do believe he has GvH and some VOD (his bilirubin was up to 4.1 today) so they are trying to treat Robert for all three possibilities; GvH, VOD, or an allergic reaction.

A bone marrow transplant is not for the faint of heart. You even find out which are the stronger nurses. They are the ones that will treat these little patients on the tough days when they are in a lot of pain and not very lovable. These are the nurses that put their arms around you when you are crying because you can’t do anything to make your child feel any better (thank you, Beth).

I think I was pretty arrogant about this process after the last bone marrow transplant (the one I call the “walk in the park”) and I want to thank those of you that have gone through it with your children and probably had to hold your tongues with me at times. Thank you for your patience. Brian and Brenda (their son, Parris was in the room we are in back in July when Robert was in last time) have been extremely patient with us, telling us stories of what Parris went through that seem much worse than what Robert is going through (I know its terrible but it is comforting). Brian told me that the doctors told them Parris only had a 20% chance of survival from the bone marrow transplant.

Thanks to all of you who have found “Will Smiths” and sent them to us. I have back-ups now. What a relief! Tonight I had to come home and before I left I couldn’t find one of Robert’s Will Smiths in his bed and I didn’t panic because I knew if Mark didn’t find him we had back-ups.

And thank you to all of you who would like to give me a hug but can’t and have put it in writing instead.