And speaking of the real world, we are at DAY 90. Today Daniel put on his mask and we went to Target to get something. I don’t let him touch doors, or a cart and honestly the way people look at him in his mask is awful. I know they are thinking- What does that kid have that he is going to give to us? But in reality it is what does everyone else have that they are going to be giving to Daniel that is the problem. He will need to wear the mask outside of the house for the ENTIRE YEAR. He hates it. It is uncomfortable and it is hard to breathe in. I have worn it and it is bad. You smell your own breath and it is suffocating and stuffy and there is no fresh air, so to say let’s go get some fresh air on a beautiful Colorado day doesn’t really work, because it is always stuffy. Today Daniel said he is counting down the next 10 days. I asked why and he said because he can’t wait to see his friends again. I feel like I want to start setting appointments now and let the parade start but I also don’t want to set him or anyone up for disappointment. We need to remain cautious as we will need to for the whole year. Again ebbs and flows ups and downs and we don’t want to jinx anything. We also are not going to bombard him on DAY100 with a party. We will do something special I am sure. I have lots of ideas, but I am also treading lightly because I know that DAY100 can actually come and go from the hospital. I do know that next Thursday he has a few final exams he is taking for school regardless of him being home or in the hospital and there is no negotiation on that. Everyday is a new day and new experience and I look forward to embracing each one head on, whatever it may bring because at least we have it.
Plugging along and trying to chip away at this stupid cytomegalovirus. We got our newest set of counts back tonight and although we are headed in the right direction with the numbers going down (229,000 to 91,017 ) we have two differing schools of thought circling the BMT team discussion table. One side says: stay the current course and see how things go with the increased single drug course he is one and hope the counts continue to go down. The concern here is that the viral load has stayed high for so long it could cause serious organ damage (although we have not really seen any yet that has not been treatable, meantionably his lungs). The opposing side says: readmit Daniel and begin and aggressive dual drug approach that has an increased potential of causing serious organ complications but can also potentially knock out the virus faster. I am personally pushing to keep him home and then when discussing these options with Daniel he throws me for a loop and says he is fine with going back to the hospital if that is the best choice and that I shouldn’t play doctor and make the decisions. Well what the hell???? I have been fighting with the doctors so hard to keep him home and he now says he doesn’t have a problem with checking back in to the hospital. Well damn. I just see it as a setback when maybe he doesn’t as much as me I guess. Maybe it is harder on me than him. I think he likes the nurses. We will see what it will be. If he stays healthy and numbers keep improving then I think maybe we will stay the course. Another piece of this puzzle is that we JUST started weaning him slowly, and I mean very slowly from his anti rejection/anti suppression medication. This is very, very huge. It means the first big steps toward regaining his own new immune system. Once this starts happening, and the first steps of this will be his own lymphocytes coming back they will also start fighting against the virus. Hopefully the CMV will be mostly or completely gone before then but by the time he is completely weaned from these meds in months to come he will be in fighting mode with his own T-cells and more to be entering back into the world.
And speaking of the real world, we are at DAY 90. Today Daniel put on his mask and we went to Target to get something. I don’t let him touch doors, or a cart and honestly the way people look at him in his mask is awful. I know they are thinking- What does that kid have that he is going to give to us? But in reality it is what does everyone else have that they are going to be giving to Daniel that is the problem. He will need to wear the mask outside of the house for the ENTIRE YEAR. He hates it. It is uncomfortable and it is hard to breathe in. I have worn it and it is bad. You smell your own breath and it is suffocating and stuffy and there is no fresh air, so to say let’s go get some fresh air on a beautiful Colorado day doesn’t really work, because it is always stuffy. Today Daniel said he is counting down the next 10 days. I asked why and he said because he can’t wait to see his friends again. I feel like I want to start setting appointments now and let the parade start but I also don’t want to set him or anyone up for disappointment. We need to remain cautious as we will need to for the whole year. Again ebbs and flows ups and downs and we don’t want to jinx anything. We also are not going to bombard him on DAY100 with a party. We will do something special I am sure. I have lots of ideas, but I am also treading lightly because I know that DAY100 can actually come and go from the hospital. I do know that next Thursday he has a few final exams he is taking for school regardless of him being home or in the hospital and there is no negotiation on that. Everyday is a new day and new experience and I look forward to embracing each one head on, whatever it may bring because at least we have it.
1 Comment
Baba cookie and zaida earnie
2/10/2015 02:52:51 pm
We are pleased that your virus numbers are coming down and your days post transplant are going up to reach 100 days . Keep going and remember we love you and all your family and are proud of all of you how you have dealt with this illness and are coming out of it stronger and appreciative of the opportunity that the bone marrow transplant has given all of us . Keep up the good fight
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