Today’s treatment was 1000 times better than the last one. Aside from the fact that Daniel came out of sleeping very combative and agitated (which they said was normal) everything else was much, much easier. We will make some more slight adjustments on Thursdays treatment and hopefully get it down pat for all the next treatments to come. Best of all, all he really needed was lots and lots of sterile drops afterwards and a simple Tylenol instead of all those heavy narcotics he had last week. Less was definitely more in this case. Always happy with the less drug option after what I know has gone through his body. Straight after his morning eye procedure we went over to The Children’s Hospital next door for his regular Monday infusion and were so pleasantly greeted with great news from our primary Doctor. He told us we finally caught a break and that we got some test results in from a few weeks go that pleased him very much. He explained that Daniel is producing Lymphocytes specific to fight CMV. To explain this in simple terms, our blood cells produce many different components and several different types of lymphocytes. Each type of lymphocyte is specifically matched to fight a different virus. This test specifically went looking for the lymphocyte that the body makes to fight only cytomegalovirus. Low and behold Daniel’s own immune system is producing this lymphocyte now on its own and even in good amounts despite getting an antiviral drop in high doses twice a day that is knocking it down. He is still producing enough on his own to call “an immune system”. The doctor was very pleased and me…Well. What can say? I have never loved lymphocytes so much. I am thrilled, excited and elated all at the same time. Again we are not out of the woods as Doc Craddock says but we are definitely headed in the right direction. This was enough to help ease the idea of the schedule we will have to ensue for these eye shots. Twice a week for three weeks and then once a week for 3 months. No kidding. This is not going to be fun, but damn, it better work, we now are leaning the other direction away from readmittance and full body systemic treatment that has a high chance of damaging his kidneys and this is great news. Even Daniel said that this isn’t the best or easiest thing in the whole process but like everything else, he will get through it. Again thank you all for your continued support and well wishes sent our way.
Speaking of wonderful well wishes our wonderful local restaurant AMBLI that has beautiful lovely owners Pariza and Kelli have always had a fondness for Daniel, well before his diagnosis. They are so thoughtful in thinking of Daniel and honoring him at an event they are having this week. Incidentally Kelli is coming up on the 25th anniversary of her bone marrow transplant so they are truly kindred spirits and understand what Daniel is going through in isolation like he is. They have decided to gift Daniel a portion of the proceeds from their fun fashion show they are hosting on Thursday so that Daniel can do something fun for himself this summer since he lost his summer last year. Regardless of if you can make it on Thursday, if you are in Denver I encourage you to go to AMBLI and enjoy everything about their little place. We love it and go whenever we get a chance to get out.
Speaking of wonderful well wishes our wonderful local restaurant AMBLI that has beautiful lovely owners Pariza and Kelli have always had a fondness for Daniel, well before his diagnosis. They are so thoughtful in thinking of Daniel and honoring him at an event they are having this week. Incidentally Kelli is coming up on the 25th anniversary of her bone marrow transplant so they are truly kindred spirits and understand what Daniel is going through in isolation like he is. They have decided to gift Daniel a portion of the proceeds from their fun fashion show they are hosting on Thursday so that Daniel can do something fun for himself this summer since he lost his summer last year. Regardless of if you can make it on Thursday, if you are in Denver I encourage you to go to AMBLI and enjoy everything about their little place. We love it and go whenever we get a chance to get out.