Tuesday, March 10, 2009

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:)


  1. sorry for the frustrations, i know the battle, and losing our paperwork three times, learned to keep my own copies and send things certified. But you will move mountains to get the help Brady needs i know it, nothing like a mother scorned!Brady will be so proud when he looks back to see how his parents fought to get him what he needed. Hold on better days ahead!

  2. bless you heart...it must be frustrating. i'm frustrated here just reading it. and hooray for no tears on the bath...he's certainly coming along and getting so big!!! yeah for brady.

  3. By the count in the post's title, even with the frustration you're still half a step ahead! :o) Progress is progress. You're amazing. Keep fighting for what you need. You're doing an awesome job. Sorry for the frustrations today, but your determination is unbeatable. It's great that you were able to spend some time with your dear friend and that Brady continues to do so well. Yay Brady!! :o)


  4. Megan,
    I dont know if this is anything that you can use - but in NYC there is a house cancer families can stay at - Hope Lodge. Maybe it is worth checking out. We are thinking of you all....

  5. Hey!
    My name is Haley, I am 19 years old, and am also a triplet. BGB. I also have neuroblastoma, I was diagnosed when I was 5, NED at 8, relapse at 16 and still fighting. I hope Brady is doing well!

  6. Hi Matt and Megan,
    Never fear, God hears and knows the need. He will take care of it all. Keep trusting and going in faith. Prayers continue to flow, and for all those with this battle ahead, God hears just reachout and realize all he has to offer. Yvonne


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