Day 15 of Proton ... Done! We are half way done today! We also had a conference call today with Dr. Merchant, Dr. Laver, Dr. Bakhazi, Dr. Indelicato among a few others to address all our concerns. As most of you know I am much more involved with Baby Nicholas' regimen and his care so my eyes miss nothing when it comes to my child. We addressed how propofol is administered since Dr. Bakhazi is a very busy man at St. Jude and I felt like he needed to just bridge the gap between the two locations. The way St. Jude administers this drug verses the way they do it here in Jacksonville is very different. At St. Jude never is a student doctor the one holding the syringe, it was always the same staff and Doctors giving the children their drugs. Here, it is a different person any given day and that makes getting into a pattern very difficult. Dr. Bakhazi said their is a learning curve with each child and I agree but there is only a learning curve when the same person is administering the drugs daily to understand the child. They push too fast here and after speaking with numerous families that have been here from St. Jude - they too agree they never experienced their child being sedated so quickly and it alarmed them. I hope they make changes to paying attention to detail with the children's individual needs in order to sedate them safer.

More importantly the conversation about baby Nicholas' radiation plan changing - Dr. Merchant said he had numerous conversations about this and believes the main are of the tumor bed was not compromised. I realize I have to trust them at this point but that doesn't put me at ease with how this whole situation went down or how it was handled. I will never have peace knowing that mistakes were made and not knowing what the future holds for my son. I pray no one experiences this process here in Jacksonville like I did. I whole heartedly know that I was lied to by Dr. Marcus and that he was not straight with me and that he went back to the drawing board and made changes to my sons mapping for radiation of his brain without notifying me of it. I will never understand why this man did not tell me a week ago that he was in fact changing my sons plan .... I will never know the truth - what I know is that everyone is paying attention to this situation and I wish it never happened - this is my baby - my son .. he's my world ....

We stopped by Kim's for a quick minute at the end of the night. She put Christian's Harley cap on him ... lol too funny.