Today we spent all day at the hospital. Once every three weeks Daniel has to have an all day infusion that is an anti pneumonia drug. It is a precautionary measure and since Daniel has had pneumonia already it is important that he keep up on it. The time isn’t a big deal. He didn’t mind. Typically we would have done it yesterday but this particular drug makes him feel terrible and he didn’t want to feel bad for his Monday radio show (priorities people). The perk to doing the all day infusion today was that we cancelled school for him. He will make it up on Friday though. That being said after a full day of sitting around the clinic feeling lousier by the minute, he had to end the day with an hour of physical therapy. Kristen does not let up and works him hard, regardless of how he feels. She knows it is best for him and honesty it is that much harder on him because he isn’t really doing too much on his own at home lately. He has been slacking and it is really showing. Kristin (P.T.) explained that for every single day he does nothing is like 3 days going backwards. This is so evident as far as his physical conditioning. There is only so much nagging I can do, and believe me Daniel reminds me I am doing a fabulous job of it but to no avail. It is so hard for him. Both to do the exercise and to fit it in during his video gaming and now obsessive Game of Thrones binge watching. But good news came at his appointment alast weeknd as usual he checked out well. Sounds and looks good from top to bottom, and by this I mean that every single time we go to clinic several times a week they do a physical check from temperature and bloodpressure, weight (still too low) height (going up) to a scalp to soles of feet look. So thorough and not a thing ever missed EVER. We always have questions and nothing is ever considered silly or a waste of time. So today was exciting to learn that the biggest drug of all Cyclosporin, Daniel’s antirejection medication was stopped a few days ahead of schedule today. This is a big milestone. This means that in a couple weeks onc it has worked it’s way out of his system it will totally unleash his new cells to be on their own in his body and live on their own. This is the biggest step to the final step in the transplant process but for us we are hung up because instead of moving through the process Daniel is on a long term cliff hanging over the edge. This fricken CMV (virus) is holding the progress up, and just when we thought we were past the hurdle last week it has escalated again. Did I say Fuck this virus. I really mean it this time. I am frustrated and tired and sick of the whole thing right about now. I just so want to be done with this whole medication thing. But no such luck for now. Not yet. We must keep at it. So as of right now we stay the course AGAIN and stay with twoce a day anti viral IV as we have been bt since we are now off the antirejection pills we need to increase his amount of Filgrastim (GCSF) which is the booster for his bone marrow because the viral meds are knocking it out. It is all such a vicious cycle. It is all so crazy that he is really feeling okay through all of this. His only complaints are school and being woken up in the morning. Hmmm sounds like a pretty typical 15 year old. H eis talking lately about one more week until he gets his permit and is really excited so we will just keep talking about that instead of talking about what his numbers will do in the next week. Maybe the driving will be the scarier thing????
Today we spent all day at the hospital. Once every three weeks Daniel has to have an all day infusion that is an anti pneumonia drug. It is a precautionary measure and since Daniel has had pneumonia already it is important that he keep up on it. The time isn’t a big deal. He didn’t mind. Typically we would have done it yesterday but this particular drug makes him feel terrible and he didn’t want to feel bad for his Monday radio show (priorities people). The perk to doing the all day infusion today was that we cancelled school for him. He will make it up on Friday though. That being said after a full day of sitting around the clinic feeling lousier by the minute, he had to end the day with an hour of physical therapy. Kristen does not let up and works him hard, regardless of how he feels. She knows it is best for him and honesty it is that much harder on him because he isn’t really doing too much on his own at home lately. He has been slacking and it is really showing. Kristin (P.T.) explained that for every single day he does nothing is like 3 days going backwards. This is so evident as far as his physical conditioning. There is only so much nagging I can do, and believe me Daniel reminds me I am doing a fabulous job of it but to no avail. It is so hard for him. Both to do the exercise and to fit it in during his video gaming and now obsessive Game of Thrones binge watching. But good news came at his appointment alast weeknd as usual he checked out well. Sounds and looks good from top to bottom, and by this I mean that every single time we go to clinic several times a week they do a physical check from temperature and bloodpressure, weight (still too low) height (going up) to a scalp to soles of feet look. So thorough and not a thing ever missed EVER. We always have questions and nothing is ever considered silly or a waste of time. So today was exciting to learn that the biggest drug of all Cyclosporin, Daniel’s antirejection medication was stopped a few days ahead of schedule today. This is a big milestone. This means that in a couple weeks onc it has worked it’s way out of his system it will totally unleash his new cells to be on their own in his body and live on their own. This is the biggest step to the final step in the transplant process but for us we are hung up because instead of moving through the process Daniel is on a long term cliff hanging over the edge. This fricken CMV (virus) is holding the progress up, and just when we thought we were past the hurdle last week it has escalated again. Did I say Fuck this virus. I really mean it this time. I am frustrated and tired and sick of the whole thing right about now. I just so want to be done with this whole medication thing. But no such luck for now. Not yet. We must keep at it. So as of right now we stay the course AGAIN and stay with twoce a day anti viral IV as we have been bt since we are now off the antirejection pills we need to increase his amount of Filgrastim (GCSF) which is the booster for his bone marrow because the viral meds are knocking it out. It is all such a vicious cycle. It is all so crazy that he is really feeling okay through all of this. His only complaints are school and being woken up in the morning. Hmmm sounds like a pretty typical 15 year old. H eis talking lately about one more week until he gets his permit and is really excited so we will just keep talking about that instead of talking about what his numbers will do in the next week. Maybe the driving will be the scarier thing????
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July 2016
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