July 8, 2011

                                            You can tell he is not very comfortable today :(

Daner did well with me yesterday while I was with him and I got to be with him until 6pm.  He did have an upset stomach here and there and we were able to stay on top of it with some anti nausea meds.  We played a few games- Operation and UNO, rested, read from his book, and enjoyed the day together.  By afternoon I had talked him into a shower and fresh clothes.  I asked if he could be disconnected for awhile and they did that for him.  He gets really nauseated when he walks around, so I got him a wheelchair and took him to the cafeteria for some lunch which was a vitamin water and an avocado with soy sauce of all things.  He really enjoyed the time out of his room, but we did have to rush back to have his lines reconnected for his chemo and get some anti nausea medicine to stay ahead of the game.  His Dad came around 5 and Dr. Nancy came in and discussed the results from his cardiogram.  His numbers weren't where they needed to be to start his second chemo medicine, mitazandrone, and she felt strongly that this was because the scan had been done to close after his propafal and it had altered his results so she didn't really go into what plan B would be.  It left all of us really uneasy and we were eager to have the cardiogram done again!  We watched the rain out his large picture window in his room for an hour or so.  It was coming down in sheets and was soothing to watch.  I left my boys and they were able to spend the evening together and this morning.  Daner didn't do so well through the night and morning and had gotten sick a number of times.  He went to be early again to try and sleep off his nausea.  They performed another ecco cardiogram again this morning and the doctors came and discussed the results with Dane and his Dad.  The number was close to where it needed to be and they told them that the benefits outweighed the risks and that they were going to go ahead with his treatment as planned.  They did discuss the long term effects on Dane's heart and that he one day may need to take medication for it, but if they did a different treatment plan for him his recovery would not be as promising.  This news was extremely unsettling for Daner and it is so hard to watch a young 11 year old boy have to worry about the future of his heart and life.  They  started him on his smurf juice at about 12:30 and was it ever blue!  The doctor told him his pee will be green and his tears and possible whites of his eyes will turn blue!  Dane didn't like watching it go in so the nurse brought a nice pillow case to cover it with.  He did get sick a few times so the nurse gave him benedryl and off to sleep he went.  It is much easier to see him resting and peaceful than to watch him awake and miserable.