A New Way of Life

Last night I had the privilege of speaking with Ryan's pulmonologist at Stanford. I love her. She is an expert in all things lungs and I am grateful that she took the time on a weekend to speak to me. She is thorough and I wish we lived closer to her.

I told her that I had a hard time believing that Ryan has had this disease for most of his life. As I've watched Ryan over the past 2 years and I've seen his lungs change, I just can't bring myself to believe that he's been dealing with this since he was 2. If that was the case, why didn't he have cysts at the age of 10? She agreed with me. She too said she didn't think there was any way that he's had this forever. She said "Whatever caused Ryan's bronchiolitus obliterans is static. It came in and did its damage and then it left." We discussed viruses that could have cause the damage. I've always felt that it was chemotherapy that did the damage. I still believe that it had a role in shaping his lungs for this outcome, but I don't believe that the chemotherapy was the absolute cause. Other things happened. It just doesn't make sense that he was fine for 11 years and then all of a sudden he wasn't.

I asked her to be completely frank with me. As the surgeons have spent time with me over the past few days, they have made Ryan's prognosis direly grim. Yesterday the surgeon told me that Ryan would make cysts with his lungs for the rest of his life. Over and over again. I couldn't help picturing his lungs just constantly filling with these nasty air pockets. I asked our doctor if we should expect to enjoy our last days with Ryan, or if she really felt like he could get past this and live a long life. I asked her if we could do a lung transplant - if one good lung would be better than two bad ones. She talked to me about Ryan's lung function studies and how they haven't really changed over the past 3 years. She said that if he were in dire circumstances, his lung function would be worse. She said that he is not close to being sick enough for a lung transplant and that it would be our last resort.

Dr Conrad recommended a different treatment regimen for Ryan's lungs. She explained in detail how the air-trapping works, and what we can do to clear those airways on a more consistent basis. We will take her recommendations and we will hopefully prolong the use of his lungs. In essence, we will now have a new way of life. I will do everything to have him one more day.