Wednesday, March 25, 2009

Answering Your Questions

Today has been another day of insurance headaches. Here is the bottom line at least how I understand it today: The doctors we are seeing at Sloan DO participate in our insurance, however we have to seek prior authorization for procedures done on an out-patient basis because we are technically traveling "out of network" for treatment. Once Brady is in the hospital, all care will be covered without having to do this process. So, for all appointments and tests next week I have had to call separately to our oncologist at Strong and request that they will out a form documenting medically necessity for whatever the procedure and then send it to the insurance. The insurance company then approves it and sends the approval on to Sloan. My suggestion? Once a child gets a cancer diagnosis, someone should authorize all treatment, scans, and tests that bring that child closer to a cure. There would be no reason to want frivolous testing done on your child, so it seems this system would be cost effective for everyone involved. Why should we all waste so much time calling, faxing, and filling out paperwork when it is ridiculously obvious that my child is sick and needs this treatment to live. Sorry, I needed to get that out to a willing audience:)

I also found out that Brady will need CT scans done under anesthesia while we are there next week. Apparently they want areas done that weren't done at Strong on Mar6th. So, we are squeezing three appointments and CT scans into our 1 1/2 days of time available. It is going to be difficult to have Brady with us, probably grouchy and tired from anesthesia and be able to focus during these appointments. We both want to be at all appointments, so we will have to make it work!

Now to answer the questions posted yesterday:
1. Any news on getting approved to see our "doctor of choice?"
I think I answered this one above. Things are falling into place, but this is still an area for prayer.

2. How are the other triplets handling Brady being sick?
Eli and Cara are handling things so well. The toughest part for them has been the times when Matt, Brady, and I have been away. Our parents help out a lot which is wonderful, but also it is confusing to them to have so many adults in charge! Cara certainly pays attention when Brady is getting his tubies flushed or dressing changed. She doesn't like when he cries and will come next to me and pretend to cry herself. Eli is quite oblivious to everything going on, he is a happy-go-lucky type kid. Other than that they treat each other much the same as always. Brady is actually starting to bully Eli a little. He loves to wrestle, Eli doesn't, so Brady crawls around after Eli and tries to tackle him. Eli justs runs the other way!

3. How long will the surgery be?
We won't know this until after the surgery! I think Dr. L will give us an estimate next week, but I have heard that his answer will be "it takes as long as it needs to." From other parents I have spoken with, Dr. L is meticulous during surgery and peels away cells one by one to make sure that he gets all he can. His goal is always a complete resection (removal) of the tumor. I have heard some surgeries that have lasted only 3 hours, some as long as 12.

4. Is Brady's hair falling out now that it is buzzed?
Actually we think Brady's hair is starting to grow back in. He never lost his eyelashes which made mommy so happy! It seems as though he has some new fuzz coming in on that cute head of his. I'm not sure how long it takes to come back fully after chemo.

5. Will he need more chemo after surgery?
The goal of surgery is to achieve NED (no evidence of disease) status. We will have to repeat the MIBG scan after surgery to see if any NB lights up. If not, then we achieved NED, if so, then we decide what to do next. We will have to rely on the advice of the doctors at Sloan and our own research to decide what to do next. We are always prayerfully considering the best path to take. NB is an unpredictable and scary disease. Relapse is VERY common even after achieving NED. We are willing to be more aggressive with treatment now in order to hopefully lessen the chance of relapse. That might include more chemo.

Thank you to all who submitted questions. If you ever have more, please feel free to ask. We hope to raise awareness about NB through Brady's story and want everyone to learn as much as possible about this disease.


  1. much info....
    I am with you 100% on the part about insurance covering all costs of treatment seaking a cure. that should be a given! I don't get why they make it so hard to get the coverage you need...its not fair! Good luck at your next appts! I hope all goes smoothly! I'll be praying for you and Brady and your whole family!

  2. God bless you guys......stay strong.
    -Colleen, PA

  3. Lots of info today! Thanks. How sweet Cara and Eli are! As I'm sure everyone knows, insurance companies put up ridiculous hurdles so that people will get discouraged or confused, not complete the exact process for payment, and the company will have less payouts. I do think it's completely ridiculous and unfair. I really think it should be illegal when you're dealine with a chronic illness. Of course, I agree with you 100% correct that it's very inefficient and wastes lots of time. I agree no one wants to put their child through unnecessary tests and procedures--particularly those associated with cancer. (Apparently, it's a soap box issue for me. ;) ) I'm sorry you have to constantly wade through all of this balogna, but you are doing a terrific job! Don't give up!! :o)


  4. meg-
    so glad you explained how we could comment "anonymous" so that i could send my prayers and love to you guys. i haven't had a chance to see matt at work and i wanted so badly to let you know we are all sending our love. i have been following everyday and amazed by the videos. "go brady". faith has gotten you this far, and it will continue to see you through until as you said NED! love to the whole family- kristie (stepbystep)

  5. Thanks for all the info. Glad things seem to be in place. And I agree, once someone gets any diganosis that will need treatment for a long period of time, should be pre-approved in and out of network. It's hectic enough, but to add to the phone calls and paperwork is absurd!

  6. God bless you for your courage and fortitude. Also blessings to all those helping you get through this process. Praying daily for you and the family and especially Brady.
    Love ya, Bonnie

  7. Matt and Meg-

    It is with the most love and respect that I tell you this, YOU TWO ARE AMAZING! You are great friends, great parents, and all around great people. Always know that you have our complete supprt!

    Frank M.

  8. Our thoughts and prayers continue to be with you. Thank you for the time you spend keeping all of us in up to date.
    Perhaps, in the future when Brady is well, you can begin a campaign to limit the pre-approval hoops put in place by insurance companies. A diagnosis of cancer for children or adults should eliminate the need for any more stress. No one goes to Strong or Roswell for the fun of it. I will help you, if you decide to pursue it.
    Thinking of you,
    Anne and Ed

  9. hank you for answering all of these questions. ice to get to know a little more about your adorable triplets.
    Keeping your family in my constant thoughts and prayers.

  10. Sending prayers your way from the United Kingdom. Stay strong and think positively. Hugs to you all, especially Brady. Pam x

  11. Meg,
    Sczudlo here.....I always knew how amazing you were. I check your blog often to keep me connected. I will continue to pray you and your family and hope for the best as you enter the next stage of this process. I think you and Matt have tremendous strength and I am in awe of how you keep it positive. Let me know if I can help out in any way.


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