So last night was rough. After a 2 hour meeting with our oncologist, Dr. Wood; Woody (talk about a sign, Dr. Wood and my husband, Woody:)) and I were completely overwhelmed and had no idea where to turn. We were basically given 2 options for Ronan’s treatments and had only heard the opinions of our one oncologist here (who is amazing) and his “team.” Around 9:30 p.m. we called in our own special team to consult with. My twins’ godmother, Karen Kotalik,(who i would trust with my life) her brilliant husband, E.J.,my dearest friend and Ronan’s godmother, Trish, her amazing boyfriend, Max and last but not least, my other BFF, Lauren, via telephone… who has been researching morning, noon, and night for me. We sat in the cafeteria for hours and hashed out numbers, results, treatments, side effects, doctors, hospitals, resources, etc…. I felt lost, scared and exhausted. It also may have had a little something to do with the fact that I’ve had about 5 hours of sleep in the past few days. Our doctor basically wanted an answer in 24 hours. I freaked. 24 hours to decided the fate of my precious little guy. How in the world did they expect us to come to such a huge decision so quickly? It seemed so unfair and cruel. But unfortunately, time is not on our side. And decisions have to be made sooner rather than later. We compiled a list of the people we needed to get in touch with for the next day. The best of the best doctors in neuroblastoma, hospitals, people who have been through this, etc…. We spent all of today making phone calls and getting Ronan’s information to all the right people. I was amazed at the positive responses we got from doctors all over who were willing to take their time to talk with us. After a morning spent researching, I went home and met up with Woody and we were both in agreement on what to do. The way that the pieces fell together was almost like a little bit of magic/art/science/ and love. I’m not going to go into details about what road we are taking on here. That would take way too long and the details are very difficult to explain as a mom. I can tell you that after meeting with Dr. Wood again tonight, that he is in agreement with us that we have chosen the right path. Last night when we met with him Woody straight asked him, “If we do this treatment, is this what you would do for your son? ” He wouldn’t give him us an answer. Tonight with the different way we’ve chosen to go, Woody asked him the same question. His response was, “absolutely.” I know in my mind, body and soul that this is the right path for us to take. This is our best shot. Dr. Wood also said something tonight that will remind me that Ronan is no ordinary boy. He told us out of all his patients he’s seen over the years, that he’s never seen anyone with the disease that Ronan has, act the way that Ronan is acting. Basically, Ronan should be acting like he is very, very, sick. This child is acting the complete opposite of that. If it weren’t for his black eye, incision across his head, the broviac catheter in his chest, you would never know that he is fighting for his life. This just proves what I’ve known all along about my beautiful little boy. He is a fighter, he is strong, and he is unlike anyone on this earth. My friend Lauren told me tonight after spending sometime with us that she physically felt something protecting us as soon as she walked into our hospital room. I couldn’t agree more. It’s almost like Ronan has his own private force field surrounding him at all times. It is a beautiful thing to see and feel. There is more to this than just this awful disease. Something bigger is out there and there is a reason why this is happening to us.
Thank you for following my blog and loving Ronan the way you do. Even the people who don’t know us at all. I am trying my best to read all of your comments and beautiful words. They are so comforting to me, especially when I am waiting around for Ronan to come out of anesthesia or back from test results. Mama needs to snuggle up with her little angel now. Goodnight to all my sweet angels out there. I will never be able to thank you enough for all you are doing. I am going to save that job for my Ronan Sean.
Ronan with one of his angels, our Mimi Kay