We had a good day of infusions and a very quick bone marrow aspiration today. Probably his fastest procedure and wake up yet. The hardest part for Daniel of course is waiting all day with not being able to eat. Biopsy went fine and we expect results next week. As far as Monday’s MRI and CT, the results were mixed, but okay. There is still residual evidence that lights up on an MRI in Daniel’s hips. There is continued conversation between Oncology, the Orthopedic Surgeon and Infectious Disease as to the direction we will go. Once results from todays biopsy comes back we will have even more refined information. We think it will include ending Daniel’s long term antibiotic and then following up in a couple months with another MRI to see if there is any difference. The CT scan shows that the diffuse CMV in Daniel’s lungs may be improving and consolidating to more defined nodules. I am not exactly sure how this sounds better but this is what they told us today. We have cut one more IV drug out of the routine tonight but added in 8 more pills and switched up a few more things. Ach, just when I had the whole schedule down to timed perfection. Oh well. One thing that is big is that they have made another significant jump in his antirejection /suppression drug. We are ahead of schedule on this wean which may be pushing his system a little bit but he seems to be tolerating his levels fairly well with only some side effects that he is handling like a champ. It is kind of a vicious cycle because while the drug to knock out the cmv also compromises his bone marrow he is doing really well. He gets some added support, and as slow as I think it is going the doctors assure us they are okay with the weekly progress of the way it is all going.
We are still on high precautions and although I am wanting to have visits with friends and get Daniel out of the house a little bit more it seems that cold and flu season for everyone else is putting a damper on our social agenda. Mother nature isn’t helping with getting out for a little fresh air either.
Not sure if you remember from a while back but Daniel has a big rivalry going with his favorite Dr. Bob and made him wear a cheese head all day when the Packers beat his Patriots, well yes payback is a bitch and Bob didn’t hold back. All is far in love and football when it is that important to you. Yes, I gave him permission and yes Daniel was a good sport about it, but Bob better sleep with one eye open I tell you.
We are still on high precautions and although I am wanting to have visits with friends and get Daniel out of the house a little bit more it seems that cold and flu season for everyone else is putting a damper on our social agenda. Mother nature isn’t helping with getting out for a little fresh air either.
Not sure if you remember from a while back but Daniel has a big rivalry going with his favorite Dr. Bob and made him wear a cheese head all day when the Packers beat his Patriots, well yes payback is a bitch and Bob didn’t hold back. All is far in love and football when it is that important to you. Yes, I gave him permission and yes Daniel was a good sport about it, but Bob better sleep with one eye open I tell you.