Things went MUCH smoother at radiation today and yesterday, and I have to say that I am confident it will all get worked out. The Radiation Oncologist came first thing yesterday morning to talk with me and get my view of the events yesterday. He hadn't been there the day it happened because of a tumor conference he was at, but he had been making phone calls (including some to me, but we never caught each other) since he heard what happened. He apologized profusely, and told me the steps he had already taken to rectify the situation and make sure it didn't happen again in the future.
One of the steps he had taken went as far as contacting Primary Children's to see if they would be able to send someone who does this regularly over each Monday to access Mason's port before radiation, so it can be a good experience for him. That wouldn't work out because of how early we have to go in each morning, but I appreciate that he at least thought about trying it. I also have an idea of a possible solution, but I'm going to talk to his doctor at Primary Children's before I reveal it. For now, his Radiation Oncologist has spoken with the director of anesthesiology, and they are going to try to get things worked out so that there will only be an anesthesiologist who knows how to access ports working when he needs to be accessed. And I am pretty sure that we won't be seeing that other anesthesiologist or vein specialist again at all.
I think things will go a lot smoother from now on, except that Mason has been terrified and woke up crying about being poked, until I reminded him that he is still accessed. We're back to square one with that. It's been planned out, though, to where he will only need to be accessed four more times for radiology and most of his chemo...if it all goes as planned. In the meantime, I'll be working with him about his fear, and I plan to have the Child Life Specialist keep working with him.
On a different subject, when talking to the Radiation Oncologist, he also shared something interesting about Mason's tumor. I've known that they hold regular conferences where all of his medical staff involved in his care get together and discuss his treatment. One of these is with other Radiation Oncologists to discuss the best approach for treating his tumor with radiation without affecting parts of his brain that don't need to be treated; thereby reducing side-effects to those parts of his brain. He talked with me bout Mason's tumor and how his case is so unique, that they have to develop a new protocol to treat it. I guess usually, they use the same protocol to treat medulloblastoma because the tumor usually just grows in the base of the brain (cerebellum). But Mason's wrapped around his brain to the sides of his head (his right ear, and behind his right eye where his second surgery was). So after they finish the radiation treatment on his spinal column, before they move on to the intense brain treatment, he's going to take his case national and get more opinions on how to treat it.
Whether that's good or bad news, I don't know...should I be happy my son's tumor is getting specialized attention and care, or do I worry about how specialized that attention needs to be? It at least sounds like a step in a positive direction, and so that's how I am going to take it. Either way, I think Mason is receiving good care from this doctor.
Now about the care from other people involved, well, we'll just have to see.