I can't really tell you all how frustrating today has been. All optimism left me hours ago, and I guess I'm just downright tired, grumpy, and discouraged.
Here was our day:
8am Arrived at Sloan at which time we were supposed to start giving Brady contrast to drink for his CAT scan
9:30 Finally got contrast, Brady wouldn't drink it. They had to put a tube down his nose into his stomach and put in all 8 oz of contrast/juice. Then pulled tube out.
9:30-11:30 We were told the scan would be delayed because you have to wait 2 hours after contrast. We also learned that because the scan was delayed, that we wouldn't be able to meet with Dr. Laquaglia today because he needed the scan first, and he was headed to surgery.
12:00 Finally had the scan. It lasted about 15 minutes. Brady woke up really well and was starving. Keep in mind he hadn't had any food all day.
12:00-4:30 We waited for 4 1/2 hours to meet with the oncologist (Dr. Kramer) and the neurosurgeon.
4:30 Met with Dr. Kramer (the oncologist). We have waited weeks for this appointment. It lasted about 10 minutes. Brady was tired, we were tired, Brady was grouchy. She basically told us that with his type/stage of tumor that it would be treated with surgery. We felt rushed, didn't have time to ask a lot of questions, and honestly were really let down about this meeting. She was very nice though...She ordered a 24 hour urine collection. They put a urine bag with a huge tube/bag attached to collect Brady's urine until tomorrow morning. He was VERY upset/tired...still no nap.
5:00 We met with Dr. Bilsky the neurosurgeon. He told us that he WOULD NOT be participating in the surgery to remove the part of the tumor left in the spine. He explained that because Dr. Laquaglia's part of the surgery will be very long/involved (removing the large tumor in Brady's chest) and because he will be going in from the front, that to have to flip Brady and go in to remove the spinal part would be too much surgery at this point. This was a big let down for us. This means we will not get the full-resection that we hoped for. Brady will come home with that part of the tumor in his spine. We aren't sure if they will just leave that part and watch it, or if they will test what is taken out of his chest and then determine if it is aggressive enough to warrant going back in.
6:30 pm Back to the Ronald where Brady promptly had diarrhea and we had to take off the urine bag...so once again we won't have his HVA VMA levels. We had pizza in the basement with many of the other families. There are so many people here, so many children suffering. I'm not sure if I will ever be able to fully describe how hard it is to see what we are seeing here...please be praying for all of these families.
So, today we accomplished a CAT scan and two brief meetings in 9 hours. Matt and I are discouraged I guess and maybe had too high of expectations about today. We are meeting with Dr. L at 9am(I'll believe it when I see it) and a neurologist at 10am to assess Brady's motor skills right now.
Brady was a very good boy considering. He wore his bunny ears throughout the day and of course everyone thought he was adorable. Our flight home tomorrow is in the early evening which will put us home kind of late. I will try and update tomorrow after our appts, but we are hoping to do a carriage ride in Central Park before we go.
Pray for me to have restored optimism...His joy comes in the morning!