Two steps forward, one step back
The neurosurgeon phoned today. Given the results of the post-operative MRI, they are recommending another surgery to remove residual tumor. He explained that this path would better poise Madi in the quest to prevent any recurrence.
Another step in our journey forward.... the surgeons and oncologists presented to the Chief Oncologist, who presented to the board/decision makers. All have agreed to refer Madi's Proton radiation treatment (only) out of the network.
Starting the Journey
We are working several angles at this point to identify the best treatment approach. We have contacted numerous treatment programs and clinical trials including Mass General's program in Boston, Penn Medicine's Abramson Cancer Center in Pennsylvania, USC, UCLA, Children s Hospital, and Loma Linda here in SoCal.
We met with Kaiser's medical oncologist Monday 9/23. He confirmed that chemo does not help fight Chordoma. Radiation is the key to success. However, it is not just about normal photon radiation, we need proton radiation. So, our first challenge is with our healthcare provider to get them to refer us out to a hospital that is equipped to handle proton radiation (ours does not). At this point, we are waiting for the doctor to speak with the chief to present the recommendation to the board.
Radiation will be 5 days a week for 6-8 weeks. The side effects of proton radiation will be little if anything until halfway through it. And then, maybe some fatigue, nausea, and a sore throat.
Treatment should start within 6-8 weeks of surgery (8/24), so 2-4 weeks from now.