September 28th - 2012

It was a long day for us. We began the day with an ERG (this is an eye test that is done while Peyton is under anesthesia) and then an MRI. It always takes Peyton awhile to wake up, so from start to finish it was about 5 hours. This meant Peyton didn't have time for chemo afterwards. The oncologist ended up coming downstairs and meeting with us in the recovery room. She confirmed that it wasn't necessary that Peyton went upstairs for treatment. She said she felt good about the progress he's been making and didn't think missing one treatment would set us back. We were anxious about getting the results of the MRI. She told us that one tumor continues to shrink since starting this new treatment. The others are stable with no new growth. We will continue on this path and have another MRI done in 3 months. MRI days are always stressful for us. As I've mentioned, we are always nervous and anxious about the news. We are lucky to have such a wonderful oncologist that doesn't make us wait for results. She shares it with us immediately; that way we can go home without worrying and wondering. We have come to think of these doctors and nurses as our family/friends. I know that sounds strange but it's true. You become very close. They have seen us laugh, cry, break down to the point we feel we can't go on, and just about every other emotion you can imagine. Peyton's oncologist for the past 2 years, informed us on Friday she will be moving to Ohio in December. I once again found myself in tears talking to her, but for a different reason. She has been with us since the beginning. Our whole journey has been with her by our side. She's so wonderful! Not only is she an oncologist but she knows a lot about Neurofibromatosis. I feel like Children's Hospital is losing such an amazing doctor. She is moving "back home" to be around more family. She and her husband recently became parents, and I know how that seems to put life in perspective for all of us. They are doing what is best for their family and I respect that tremendously. We are just going to miss her and all the knowlege she has. Not sure who will be the new oncologist. Guess we'll see...... On another note, Peyton can have the surgery to correct his "shorter palate" whenever we are ready to go ahead with it. We have decided to not do anything until summer time. That gives us time to visit with doctors and get all our questions answered. Peyton will have to be off of chemotherapy for a month prior to surgery. This will require some advanced planning but I would rather not rush into anything. All in all it was a good weekend. We took the boys shopping for their Halloween costumes. That's always fun! Looks like Batman and Robin this year!