Ty's MRI was extremely disappointing. In the 19 days since his surgery, it is growing back and causing significant pressure on his brain stem again. He has bounced back so many times before, but it is taking it's toll and this time it is hitting him pretty hard. We need to get back in the ring immediately and we are ready.
Ironically, I received a phone call from Boston (Mass General) just before seeing the latest MRI report. It turns out that they reviewed his case carefully and did not feel Ty is a good candidate for the proton beam therapy after all. They said that the dosing with protons would be low, the efficacy is expected to be the same as IMRT (which is what we will be doing here at MSKCC) and the side effects will be minimal regardless of which approach. So, there wouldn't be much of an advantage to leave our team here in NYC and drag him all the way to Boston for therapy.
We were disappointed because we were always led to believe that if proton beam was an option, it would give him the best shot at survival. The radio-oncologists we spoke with have reassured us that this is not the case given the characteristics of his tumor and I just hope they are not sugar coating. At the same time, we are also relieved because when we received the terrible news about the tumor growth we realized we simply can't afford to wait for treatment in Boston anyway. Even if he was a candidate, they wouldn't be able to take him for several weeks and in Ty's case every 24 hours is critical at this point.
He was given a high dose of steroids this evening, and it has helped significantly (as suspected). Although it will hamper any strength building in his arms and legs, it will improve his ability to speak and swallow, and it will minimize his nausea and head pain. That alone will make him so much happier. We are already seeing improvements just hours later. He has a hearty appetite for the first time in weeks, he's been relatively happy and having fun (even made it to the toy room for Bingo tonight) and he is having much less pain overall.
It's a whole 'nother story for Lou and I. Our anxiety has spiked and we are completely on edge, but once he is in that machine and starting radiation treatment I think we will both be able to breathe a bit easier. It will work, it simply has to. His first dose may even happen as early as tomorrow. We will keep you posted.
In the meantime, thank you so much for all of your thoughtful comments, emails, gifts and facebook messages. Even though we have little time to respond, please know that we read each and every one of them and are touched beyond words. Without your support I don't know how Lou and I would be able to do this. XOXOXOXO to all of you.