Update 1*21*08

Ok, so we went and got the radiation scans today. They had to do their own scans into the actual radiation machine and system so that each time he goes to get radiation, the machine knows exactly (VERY EXACTLY!) where to point the beams. He will be getting IMRT which is Intensity Modulated Radiation Therapy. It sends beams of radiation to all different angles of the tumor. He had to be sedated today and will have to be sedated every time he goes in for radiation. We will go in Wednesday for a mock run to make sure that the machine is correctly calibrated and lined up exactly and then we'll start radiation on Thursday. We will go in for 12 days (except weekends) at 7:30 each morning for therapy and then come home. Our major concern was the side effects it will have on all the bones, eyes, brain. Lukas will be getting a very light dose so the side effects to his growing bones and eyes are very minimal, (the bones could grow weird, but it's a cosmetic side effect if that happens), but they still have to be extremely careful with his brain. The radiation oncologist is planning on not hitting his brain at all with the beam, that's the goal. There could be learning disabilities, but that's the same with chemo, so that is where Early Childhood Intervention will come into play. We will get an appointment set up for them to come and evaluate Lukas now and make sure he's on track and then they'll continue to monitor his development. There are also the other side effects like nausea, vomiting, diarrhea, skin burns and lack of appetite.Lukas is also starting back on steroids today and will be on them until the oncologists feel they have helped. Those come with their own fun side effects. Swelling, either an insatiable appetite or no desire for food at all, and either a great mood or really cranky and tired, stomach distress (which he'll be on Zantac to help that side effect).. The list could go on!We are interrupting chemo for radiation. As soon as we are done with radiation, we'll start up chemo again. We don't know if the damage to his optic nerves is permanent or reversible, don't know if when the tumor shrinks enough he'll be able to see again, that's all unknown still. We'll just have to take it one day at a time and see how it goes. There is a possibility of hospitalization if he stops eating and we can't keep fluids in him, he might have to have transfusions if his counts get too low for him to be on anesthesia... So it will literally be one day at a time for us for the next 3 weeks.