Daniel has really turned it around in the last 24 hours. So much of it is drug related. Yes he still definitely has the issue of the CMV virus to contend with but that takes time and the antiviral meds that take their sweet time to do their thing. On top of those drugs he got two others today that are once a week to combat the virus and build his immune system. He is also still getting the bone marrow booster daily because the anti viral medicine is knocking down his marrow, but this is to be expected right now. His BK virus is somewhat behaving and although he has blood clots he is passing he is now controlling pain with a morphine pain pump. He is using it sporadically and thank goodness it is not making him sick. His nausea is under control because he is taking less pain medicine and because it is he is awake and back to eating his normal self. He is a very determined kid. I think this is because he heard the doctors say (threaten) after 2 days of sleeping so much and not eating and throwing up that they will need to reconsider reinserting the NG tube by Monday…well Daniel just polished off a full meal from Elway’s steakhouse for dinner so I am not really concerned of this happening.
Actually his whole last night and day has been stupendous. He has eaten well, moved well and had maybe one of his best radio (call in) shows to date. He did a bunch of homework and has been in great spirits. I hope I can keep up with his pace through the weekend. He is really demanding with his needs but continues to be appreciative and respectful to me and all of the nurses and doctors here. I could not be more proud of how well he is coping with all of this. I am repeatedly told of what a great kid he is and how well he is handling this but I don’t really need to be told this. I already know it.
This reminds me of someone else that has handled things in stride. One year ago today, my sister Rochelle was diagnosed with Breast Cancer and began her year from hell. It is certainly far from over but so is her life. The two of us have grown closer than any sister’s possibly can as we have supported each other through the unthinkable. My minute by minute with Daniel has helped her take her mind of her minute by minute problems and distract her from her health problems so she wouldn’t obsess (like she tends to do-sorry sis, I couldn’t resist that one). She has been a constant liason to my parents that I have not been able to be for a variety of reasons. We have been at each other’s fingertips from the start of the year. From her diagnosis, to my having to leave her devastated in recovery at her surgery to be with Daniel at the beginning of his journey at her urging to my surgery with her unequivocal support to her every minute with me on the phone since the second of Daniel’s diagnosis. In fact that is why I couldn’t get this blog done because we couldn’t stop texting with each other. We constantly laugh and cry all day with each other and I wouldn’t have it any other way. We both know we couldn’t have gotten through each day without each other and there is not a morning that goes by that there is not a text from my sister waiting for me on the phone. If I haven’t checked in by a certain hour to let her know everything is fine I know she is worried and I am in trouble. (I told you obsessive) I try very hard to get to Rob first, but that doesn’t always happen. I made a big sign for her (with her kids) before her surgery that reads BE STRONG that we hung in front of her bed so that she could see it when she woke up from recovery. That was almost a year ago. It still hangs there and reminds her of how strong she is. She tells me the same when I am tired and to Daniel when he struggles but she is truly one of the stongest people I know. As she reaches this milestone I have to say how proud I am of her. She is strong and she is beautiful and she is courageous and she is loved and she has a long future ahead of her. She is a survivor.
Actually his whole last night and day has been stupendous. He has eaten well, moved well and had maybe one of his best radio (call in) shows to date. He did a bunch of homework and has been in great spirits. I hope I can keep up with his pace through the weekend. He is really demanding with his needs but continues to be appreciative and respectful to me and all of the nurses and doctors here. I could not be more proud of how well he is coping with all of this. I am repeatedly told of what a great kid he is and how well he is handling this but I don’t really need to be told this. I already know it.
This reminds me of someone else that has handled things in stride. One year ago today, my sister Rochelle was diagnosed with Breast Cancer and began her year from hell. It is certainly far from over but so is her life. The two of us have grown closer than any sister’s possibly can as we have supported each other through the unthinkable. My minute by minute with Daniel has helped her take her mind of her minute by minute problems and distract her from her health problems so she wouldn’t obsess (like she tends to do-sorry sis, I couldn’t resist that one). She has been a constant liason to my parents that I have not been able to be for a variety of reasons. We have been at each other’s fingertips from the start of the year. From her diagnosis, to my having to leave her devastated in recovery at her surgery to be with Daniel at the beginning of his journey at her urging to my surgery with her unequivocal support to her every minute with me on the phone since the second of Daniel’s diagnosis. In fact that is why I couldn’t get this blog done because we couldn’t stop texting with each other. We constantly laugh and cry all day with each other and I wouldn’t have it any other way. We both know we couldn’t have gotten through each day without each other and there is not a morning that goes by that there is not a text from my sister waiting for me on the phone. If I haven’t checked in by a certain hour to let her know everything is fine I know she is worried and I am in trouble. (I told you obsessive) I try very hard to get to Rob first, but that doesn’t always happen. I made a big sign for her (with her kids) before her surgery that reads BE STRONG that we hung in front of her bed so that she could see it when she woke up from recovery. That was almost a year ago. It still hangs there and reminds her of how strong she is. She tells me the same when I am tired and to Daniel when he struggles but she is truly one of the stongest people I know. As she reaches this milestone I have to say how proud I am of her. She is strong and she is beautiful and she is courageous and she is loved and she has a long future ahead of her. She is a survivor.