This weekend was a very good one for Daniel, he spent lots of time having his friends come over and just hang over. Tonight at dinner he made a point of saying how great it was to have them just be with him. Hopefully all this whole past week his body has been working towards finally knocking out the final bit of CMV gone from his body. The obvious advantage of this of course is having the cytomegalovirus gone the secondary bonus will be to slowly be able to reduce the amount antiviral IV drug he gets. This drug is severely depressing his bone marrow production that doesn’t have a fighting chance at this point with all of the antiviral drug. As soon as the virus is out of his body and so is this drug then hopefully his marrow will start coming back. Around this same time or soon after, he will be completing his tapering of his antisuppresant drug. When this phase is completed, the doctor describes it as his body will begin to unleash his own immune system. This is targeted for around June or July I guess. That is when I suppose he is on his own, with his new cells emerging and his brand new immune system developing. As of Friday we experimentally dropped one more pill of the schedule (twice a day), and after I draw labs tomorrow morning and take them in first thing in the morning, we will be waiting for Tuesday night results to see if we are a go for the start of this exciting transition.
Unfortunately, I haven’t had as good of a weekend. I have been stewing on information I got at the doctor on Friday. Not bad health news. All is good and in fact if the above goes as expected, technically Daniel is right where he needs to be, maybe ahead of the game. I have just been sulking like a baby, because I was told NO. NO NO NO to everything. I asked the doctor about allowing Daniel to do a few things. Things like a driving class, things like a mountain weekend, things like school and a family trip next winter and I got NO, NO, NO. I felt defeated, and punished and discouraged all at the same time and it hasn’t passed. I knew it was going to be a long road. I knew that this didn’t end with the ‘all is clear’ after his last bone marrow biopsy. Parenting doesn’t just end and allow you to get your way because you are tired and need a break. The more I think about it, I am acting like a child having a tantrum that isn’t getting her way. I need to change my frame of mind I think and refigure that once again this is a short period in a long life for Daniel that has a long complicated journey. There will be time for weekends away and family vacations and let’s just end it with …Thank Goodness there will be. That is nothing to be upset about. We now have the gift of time to wait.
Unfortunately, I haven’t had as good of a weekend. I have been stewing on information I got at the doctor on Friday. Not bad health news. All is good and in fact if the above goes as expected, technically Daniel is right where he needs to be, maybe ahead of the game. I have just been sulking like a baby, because I was told NO. NO NO NO to everything. I asked the doctor about allowing Daniel to do a few things. Things like a driving class, things like a mountain weekend, things like school and a family trip next winter and I got NO, NO, NO. I felt defeated, and punished and discouraged all at the same time and it hasn’t passed. I knew it was going to be a long road. I knew that this didn’t end with the ‘all is clear’ after his last bone marrow biopsy. Parenting doesn’t just end and allow you to get your way because you are tired and need a break. The more I think about it, I am acting like a child having a tantrum that isn’t getting her way. I need to change my frame of mind I think and refigure that once again this is a short period in a long life for Daniel that has a long complicated journey. There will be time for weekends away and family vacations and let’s just end it with …Thank Goodness there will be. That is nothing to be upset about. We now have the gift of time to wait.