MD Anderson it is!!

What an eventful week. So much going on, my head is just full!!

Tuesday morning the oncologist called and said he'd done his research, made some phone calls and felt MD Anderson was the best place for Megan to get her treatments. He said the endocrinologist was super nice, very helpful and willing to consult with him on Megan's case. His treatment plan was fairly different than Siteman's plan, so the decision was very easy to make.

• They wanted her off any thyroid medicine and on the low-iodine diet for 2 1/2 weeks.
• They will give her a very small dose of radioactive iodine (RAI) on day 1.
• She will come back on day 2 and have a full body thyroid scan.
• Then based on the results of the scan, he will give a second appropriate dose of RAI to kill as much of the active cancer as possible, that is safe for Megan to have.

So our oncologist said he'd email the doctor and start the referral paperwork. My biggest fear was the insurance issue. He was worried about getting and staying there and I said I could handle that, but the deductible and co-insurance amounts is what I'm worried about. He said he'd have his office staff call United Healthcare and start the process with them.

That was a whole lot of great information, but it still left a lot of questions. When do we go? How long will we be there? How will we get there? Where will we stay? How often will we have to go back to Houston? Can she even fly commercially back home since she will be radioactive? Megan gets car sick and she'd have to ride in the very back seat home - how would she do on the ride, especially after just having had her treatment?

I looked up MD Anderson online and starting reading their information. They are an entire Hospital, not center, just for cancer. They are the #1 cancer treatment facility in the country, and one of the top in the world. They obtain more cancer research grants and money than any other facility in the country. They are one of only a few centers that treat pediatric endocrine cancers in the country. WOW. I'm thrilled that Megan is going to have such incredible care.

During this time we were also making the switch from the shots twice a day to Coumadin pills. So she had to get blood taken every 2 days for the past week. Luckily she spiked high number fairly quickly and was able to finish the shots on Tuesday and totally switch to pills. Thursday her levels were high, so he reduced her from 5 pills to 4 pills of Coumadin a day. So now overall, she's down to 11 pills a day, plus the Calcium, inhaler and nose spray. She's done with shots, the steroid (which gave her terrible side effects which will take awhile to completely go away). Her eye sight is still blurry and double off and on, but not near as bad. Her hearing is still dulled some, is tingly in different parts of her body off and on, and her legs, butt and back hurt pretty bad. She just has occasional headaches, but they don't last as long and go away with the pain med. MUCH improvement overall. She's definitely loving TV and the internet again. She loves when the kids get home from school and she can get on Facebook and chat. Animal cops and ABC Family channel are her favorites right now. She's pretty tired of Disney shows reruns - amazing!! She does still like when they have new episodes though. :)

New this week is the low-iodine diet. Wow isn't this a challenge. NO commercial bread products, dairy, soy, egg yolk, rice, almost anything pre-packaged. So I've made from scratch a bunch of things -- banana bread, french bread, cinnamon pancakes, apple juice/applesauce oatmeal, coconut/applesauce oatmeal, no salt added spaghetti sauce, pork chops, fried deer burger, fruit salad and jello. Grocery shopping is interesting. I've looked up products online before even heading to the store. I have to read all the labels and am buying all organic. I'm still not sure if unsalted butter is allowed. I'm guessing no, but I did use it just a little. The breads are with egg whites, oil and applesauce instead of eggs and butter. They were pretty darn good actually. The oatmeal was super too. I made a huge things of spaghetti sauce so she's been stuck eating that a bunch this week. I emailed JIFF peanut butter and they use un-iodized salt so she's had the low-sodium version for sandwiches. Also hot dogs with no bread works. She loves the pure maple syrup for the pancakes. Tomorrow is sausage and egg whites for breakfast. I bought unsweetened cocoa to make a cake for her. They even have a recipe for icing.

I was doing my organic shopping when I ran into my neighbor Gwen. I told her about going to Houston and she was telling me about Wings of Hope and Angel Flight. Carol had mentioned them too. So Gwen's hubby Scott is a professional pilot and flies out of Chesterfield. Long story short -- Scott made some connections with Wings of Hope and they were thrilled to be able to help us fly back and forth to Houston. Gwen even brought over a picture of the pain we will fly in. Megan is super excited!!! I get air sick pretty bad...so I'm calling the doctor and asking for a major dose of motion sickness pills and packing barf bags just in case. eek. but, if Megan can handle cancer treatment, I can handle a little air sickness. :)

My friend Cindy called tonight and she called Ronald McDonald House for me. The lady said the hospital has to make the referral, that I can't just do it myself. So I have to call MD Anderson and talk with their social work department. St. John's was talking about that also on Thursday, that their social worker handles all the lodging for patients coming into St. Louis for treatment. So I guess it all makes sense. The lady also told Cindy that I need to do it very quickly because they book up very quickly. The house has 50 private rooms with bathrooms. It's $25 a night. St. Louis' house is only $5 a night. Interesting. But, the house is walking distance from the hospital and they have a shuttle that goes to the hospital at all times. I actually think it would be neat to stay there. Just the experience of it and being with other families in the same situation. I'm sure not something you'd want to do forever, but just interesting and fulfilling in some way...hard to describe how I feel.

Also while at St. John's on Thursday, they decided we need a nurse case manager, which is available through our insurance. The lady called UHC and set up the process. We should have a call on Monday from someone who will help guide us through the maze of cancer I guess. Not sure exactly what to expect, but I'm sure it can't hurt.

While she was on the phone with the insurance and we were there, she started the referral process for the MD Anderson stuff. She said all the things we'd have to do to get it approved and how to prove that we need to go out of town to get appropriate care. Then the insurance lady asked the Dr. in Houston's name. She looked him up -- and both the endocrinologist and MD Anderson are IN NETWORK!!!! HOLY COW!! Finally some amazing news! That's a $20,000 difference right off the bat I'm sure. I was ready to cry I was so happy. That was the biggest barrier I was scared of. That kind of out-of-network care would be a serious medical debt, especially over time because they will follow her for years to come. 50% of patients that go through treatment have other endocrine issues post-treatment and they follow and track everyone they treat. I think our lives have changed forever.