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.