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In the MRI, Gavin watched a movie. He had to rub his eyes a couple of times, but waited for pictures to finish before doing so. His shunt hurt at one point, so we adjusted. He ditched the goggles 2/3 the way through and just listened because his eyes were too itchy and burning. He did what he had to do, and sat as still as possible. I was very proud of him. We avoided sedation. Afterwards, the IV came out and we grabbed a breakfast sandwich quickly before making our way upstairs for his appointments.
Today something amazing happened. Together, Gavin's team and I imagined the end of this long road. We looked at the bully. Without officially getting the radiologist report, Dr. P explained that the tumor looks much more homogeneous which is good, and I could see how much smaller it was. Dr. Petronio explained that Visualase has worked well to get at the bully from 4 different angles, but that another laser (called Neuroblate) is available to Childrens for a few months and he would like to use it. I guess it's slightly different with a side firing mechanism that goes over more tissue surface rather than through it.
What this would do is better coagulate the tumor tissue and make it easier for..... get ready..... years in progress..... SUCKING THE REST OF THE BULLY OUT. Like using a surgical vacuum and sucking the rest of the bully out. Meaning no tumor, no dead tissue, no bully in my son's brain! I had him repeat, and then I repeated this. Because I couldn't believe we were truly seeing the light at the end of the tunnel. I somehow didn't cry, but I paused, in awe of Dr. P and Dr. S, for all they have done to save Gavin. We are going to roll him up in a ball and essentially suck his lifeless body out of Gavin's brain, and I cannot really fathom it.
I can't imagine looking at a picture of Gavin's brain without a bully in the middle taking up residence. Pushing important structures out of the way. Taking some of Gavin with every push. I can't imagine a life without brain surgery. But today, while sitting in a little office, I felt it. I felt that this will happen, and Gavin will live tumor free. We still need to be patient, and schedule this next laser surgery and finally the take down of the bully. But we have a plan to finally defeat.
Was that amazing enough to read? Well I have more. Pending final decision about the fact that there has been no growth on MRI (radiologist needs to make final decision), Gavin may be done with oral chemo forever!! The Palbociclib, that saved his life and stopped Joe Bully may not be needed anymore.... ever. There is no reason to believe that Gavin needs it anymore. Another amazing feeling washed over me as I thought about how hard we had to fight for that medicine, how Gavin wouldn't be here without it. And now we don't need it?!
As you can imagine I left that appointment on top of the world. I turned the corners of the parking ramp, and remembered doing so just two years ago when we had little hope. I could recall the feeling that the world was spinning uncontrollably around me as I replayed what I had just heard - that Gavin has a few months to live. I remember so clearly looking at Gavin in the rear view mirror and not being able to stop the tears from flowing, and feeling the weight of our reality. We were losing him. The fight has been long, but today was a victory. Today we planned the beginning to the end of Joe Bully.