Robert’s Road to Recovery Journal

Presented by the International Society for Mannosidosis & Related Diseases.

Kathleen’s Diary: March 14, 2002

Robert’s Bone Marrow Transplant + almost eight months

Yesterday was pretty scary to me; Robert’s ANC level was 230. For you blissfully unaware parents, a child must have an ANC above 500 for three days in a row before they are allowed to leave the hospital and go home. To me, this meant Robert should be in the hospital. I calmed down after I talked to my father-in-law (do you all remember Dr. Fred?) and Mark. Fred said to make sure Robert doesn’t get a virus with that low number but that it was fine to have Robert at home. Mark said the lab sheet also stated Robert was developing immature neutrofils. This means his count should be going up. And today his ANC’s were 460.

Also, Dr. Cowan passed on a message to us saying the donor has agreed to donate again (I know each of you were praying and that it really helped).

Today, Mark and I were running and I was thinking about how quickly I could get Robert’s blood into the lab and I took a nasty fall (pretty messy and lots of blood flowing). At that moment I realized how stressed I was. I also realized that we would go through bone marrow transplant with Robert 10 times if that is what it will take to keep that new sparkle in his eyes, his ability to run with Matt and not fall all the time and his new communicating skills (Hey, what you doing? And You know what?). He is a different, more complete child now than he ever has been in the past.