This week has been one for the books. I honestly do not know what day it is right now. We have been at the hospital long days doing testing and quite frankly I am exhausted. I don’t really know if this is current testing for his current virus or if this is 6 month out testing from his actual transplant. Whatever it has been tiring for both me and Daniel. A lot of sitting in rooms waiting. Monday’s blood draw I did so that was quick. We did that at home so no waiting around for that. Delay on the midday CT Scan because of power outages at hospital and three trips back and forth to the hospital because of SOMEONE (who shall remain nameless) forgetting his computer at home. These are times I am grateful we are only 15 minutes from the hospital, but still three times in one day is a bit much. Afternoon radio show was a treat and comic relief at it’s best though. Daniel’s bestie teacher/friend Josh came to his show for the first time to see what it was all about and I think was very impressed. Daniel was excited all weekend before that Josh was coming and was so proud to share his hospital life with Josh, after all Daniel devotes so much time to his radio show in the Seacrest Studio. Long Day #1. Plus Matthew finished first day of finals and had two more to go. Tuesday was finals for Daniel in the morning and I had a meeting for my mother in law, rush rush rush. Thank Goodness she is doing so well. One less thing I am worrying so much about. Back home to get Daniel then to all day treatment and I know there was another test and I already can’t even remember what it is. OMG it was only yesterday. At least we found out that the CT scans looked improved and his lungs are showing less to no evidence of CMV. Unfortunately we found out there was a problem with the labs for his CMV blood work and they were unreadable. Seriously?!?!?! SO there goes our hope of a second negative read in a row. Well they drew blood again for a Thursday read so fingers crossed. Wednesday came after very little sleep. Last day of school for Matthew which is exciting for him (sort of-he will have 3 weeks of summer school) School all morning for Daniel and then rushed to hospital for another full day. This time we started with meeting one of the heads of the hospital for some excting news to come. That is all I can say about it for now. (Spoiler alert ‘Broncos Go’ ). Next up EKG and Ecocardiogram , no idea how that went yet. I assume fine, although after the next test I should stop assuming anything from now on. Down from 3rd floor Cardio to 1st floor outpatient for an eye exam. This is Daniel’s least favorite of appointments. He hates his eyes dilated and has had it done so many times. It is long and boring and just a nuisance. In the past he has had a few flecks of blood that were due to low platelets but resolved as his numbers got better, but because of this he had to come for eye visits every couple weeks and has really grown to dislike this department, so this time when he took the same pictures as always and we got a very different reaction than ever before my heart dropped immediately. Geez, what now. Don’t get me started on the fact that we are three days away from 1 year from diagnosis day. Don’t give me bad news. But being around this place as much and as long as we have now you know that pause, you recognize that silence and you know something immediately isn’t right when the doctor leaves the room and comes back and tells you they have called for an immediate specialist to come in because something doesn’t look good. What now? Sure enough, we do not have all the details yet but it looks as if Daniel’s stubborn CMV has found it’s home in his eyes. This is one of the organs that CMV typically targets. Eyes, lungs and gut. He has had it in the lungs and it seems to have cleared, and so far no sign of gut issues but now his eyes and this is the most worrisome of them all. To me especially. After all he has been through we are not going to let him loose his eyes. I am now freaking out and not hearing anything. The highs of our earlier good news is now gone. I actually can not hear a single thing being said in the room. Daniel is listening for the both of us. A specialist from next door at University Hospital has been called in quickly at 530 after being sent pictures from the doctors cell phone (He rode his bike over) and seemed to quickly determine that this is what it was. They have told us what will happen but I stop all the talk at once. Daniel is comprehending it all but I know it all has to go through Dr. Craddock and BMT first. No one knows Daniel and everything about him and his care like them. They literally know every cell in his body. It is now after 6:00 and we have moved upstairs for Dr. Craddock to meet us after the clinic has closed but he and Julie our regular nurse have stayed to try and explain and calm me down. It is not great. We will know more tomorrow after Daniel has to go for so not so fun tests. He will need to have needles in his eyes. My G-d this is a kid that couldn’t stand needles and now you are going to tell me they are going to stick them in his eyes. I really was surprised at how much I was able to handle up until this point but I think this is my limit. Daniel very rationally discussed a full course of tests and treatments to come with Dr. Craddock while I was pretty much in shock. I was so amazed and how proud Daniel single handedly took over and advocated for himself. He needed too for his sake and mine. They discussed different options and one very likely is that we may be admitted for different systemic treatment tomorrow or maybe Friday. I am still processing this and not really thinking about it. Right now we are testing out a valium to see if it calms Daniel down . Not sure if anyone remembers Daniel’s paradoxical reaction to Adivan a while back. Hopefully it has a calming effect tonight and then tomorrow when he has to go for a test to check if his eyes really do have CMV in them or if it is something else and we will decide the course of treatment from there. I think I will be taking the extra Valium to try and sleep tonight. I promise to keep you all informed but can not handle a single other thing tonight.