One Step Forward, Half a Step Back

Sorry for the late post. I had a chance to have dinner with my best friend...how wonderful!

Here is the latest. The oncologist called us back this morning. She is on her way out of town, but wanted to give us the info she has received from Sloan in more detail. Basically, she told me that she faxed all reports to them (about 325 pages!) and that I needed to call Dr. Laquaglia's office to talk about insurance. I called them during nap time and it was quite frustrating. They told me they have never heard of Brady or spoken to our oncologist...huh??? She also said they hadn't received any fax in regard to Brady. She went through the whole song and dance about what paperwork they would need to even have a chance at an appointment. I reiterated that I knew what they needed because our doctor had called there yesterday and since passed the info on to us. I also told them that our doctor had spoken with someone who told them that late March might be a possibility for surgery. I hung up with them and instantly called the NP at the oncologist's office. She is SO fabulous and got right on it. They re-faxed everything and had no explanation for why Dr. L's office claims to know nothing about Brady. All I know is that they will know quite a bit about Brady by the end of the week because I will be calling daily. Here we go again, advocate, advocate! The secretary did tell me that late March could still work if we can get things together quickly. That is an area for prayer!

I'm in touch with a wonderful case manager at our insurance who has been a great help. She is helping us with the details of making sure things are covered and approved ahead of time.

We continue to rack our brains as to how this whole scenario in NYC will play out. There is just no way to predict how long we will be there and all of the details. We are also in touch with a few families who have walked this road before. We've met one family in cyber world who spends a lot of time at Sloan and to whom I've been able to ask a lot of practical questions. Please pray for this family...their son Eli has Stage IV NB and his battle is much more involved than Brady's and he is a true warrior. There are so many children fighting this fight. My heart aches every day thinking of families who spend months apart in order to seek treatment at Sloan.

Brady is doing great! I gave him his "sink bath" which involves taping up the tubies and being careful not to get the site wet. After his bath I flushed both lines. No tears from my brave boy! He has come so far...my heart bursts with pride at how amazing he is:)