Christian's PPB Cancer Journey

Day 4 proton radiation done one more day to go.
We spoke with the radiologist today she said we will probably do scans in December. If he does get any side effects it will be during Thanksgiving so if he starts coughing that’s why. He could get fluid in his lung but his pulmonary doctor is already prepared. She said there could be left over scarring from the radiation. This is how fast and aggressive PPB cancer is it grew from the time he did the simulation and the time he started radiation less than two weeks. We also spoke with an oncologist/research doctor today and she had a lot to go over we spent about hour and half talking with her. She discussed several different possible options for new treatment options. All of them are in clinical trial states right now. There’s a promising new med that should be out the first quarter of 2026 but it could be hard to get on the list to get access to it. We are going to push for this options. The other options are mostly depended upon further testing of the last tumor sample they removed from his big surgery last year, which they requested today. He is now on a registry for child oncology group. Some of the medication his oncology can get his hands on other ones our other hospital can and one Saint Jude has and a hospital in China. They know the one will be a major fight with the insurance company. Our insurance company will not approve one medication for his next chemo cycle. It is very complicated to explain everything in full detail with all the different mutations and research treatments. Will be easier when next testing comes back on his last tumor they took out. She did tell us that his oncologist has done amazing job navigating his treatments.