April 2009

Once again, I have been neglectful in my posting about Nicholas. But, rest assured, that means things are going well. It means that we are home and not around nurses and doctors who can take care of him while I post. We are in our 2nd cycle of the first round of maintenance (cycle is 4 weeks and a round is 3 cycles or 12 weeks - This will repeat until Nov 2011). He should tolerate this very well - compared to what we have already been through, it is almost as if we are done treatment. Typically we only go to the clinic every two weeks, but last week we were there every other day. Nicholas's ANC number was low (ANC is a measurement of how well your body can fight infection) and his medication needed adjustment to bring this back up. He wasn't sick or anything, but you don't want this ANC number to be too low in case you should get something...such as swine flu. They were going to switch his broviac (tubes that go into his body so he doesn't constantly have to be pricked) to a port (a central ine that that goes under the skin and will allow swimming and tubs) last monday, but that got scrapped when his medications needed adjusting and so much lab work to see where he was with things. So this will probably get rescheduled for June 1 when he is due for his quarterly spinal treatment. At least that is early summer and should be good by real swimming time (although some neighbors already have their pools up and going). This was disappointing as dressing changes are not a pleasant time in this house. He can't stand it and I look forward to not having to flush the tubes on a daily basis either.