Feb. 24-26

I am happy to report that Megan is starting to feel much better. :0) She is eating and drinking normally, though she has lost a total of 40 pounds now. I'm wondering if I'm going to have to buy new pants for her again...She had gained 20 pounds this fall (and now we know why) - and I had to buy her all new pants -- but cancer is not a fun way to lose the weight! She is also watching tv now, playing on the internet and able to read small amounts at a time, so no books yet. Her vision still isn't the greatest, but a bit better. She has started to walk slowly with the walker around the second floor of the house. She took a visit to the first floor down the steps and she said it was too hard getting back up to do it often. At least she tried! She did take a fall in the shower too, but just some minor bumps to be had. She didn't want to have me come in to get her the face soap...silly girl. :) Her head pain is getting better, just tolerable pain right now, which is awesome. She's still taking the Dilaudid for pain during the day, but none at night now. If only the medicine's side effects would go away, she'd be very happy. :)

We had a set-back on Thursday, which made me pretty upset. The oncologist called to say that the pediatric endocrinologist at Cardinal Glennon decided she didn't want to take Megan's case because it's just too rare and complex. He tried the adult dr's, but they wouldn't take her either, so unfortunately she can't get her cancer care at St. John's. He said he'd try to find her someone in the Washington University system.

Friday morning I got a call from a nurse who works for the two doctors who see thyroid cancer patients in the radiation department at Siteman Cancer Center at Barnes. She was very helpful, providing plenty of useful information about their Radioactive Iodine (RAI) treatment program. They do see everyone, ages 5 - 97. They handle the entire care, no separate endocrinologist is usually required. Their program does seem to be less restrictive than St. John's program. They do the entire treatment on an out-patient basis as opposed to staying in the hopital 2 days like St. John's was going to require. They only do one thyroid scan 5 days after the treatment, as opposed to one 2 days before and 1 week after at St. John's. St. John's also wanted her to be completely off any thyroid medicine for 6 weeks and Barnes wants her on medicine to a thyroid level of 30 before she goes off the medicine for 2 weeks prior to treatment. Of course, she isn't on the medicine they want her on. So, we go to see the new doctor on Tuesday morning. More info to follow...

So Friday afternoon I spent calling different departments getting medical records and scans on CD and took them to Siteman. The only part I'm sort of upset about, is that Siteman isn't in a "kid-friendly" area - it was kind of depressing when I was there. Nothing compared to going into the Cardinals Care Kids Cancer Center at St. John's. I'm sure Children's Cancer Center (an extention of Siteman) is awesome too, but they don't treat her cancer there. So boring adult cancer center it is. But, the only thing that matters is that they have incredible cancer care. Period.

Of course the bills have started coming in and they are fun to go through and see how much they bill for a service and how much insurance allows for each of them. And someone with out insurance would pay the whole amount?? unimaginable. The bad news on Wednesday night was that I realized they were denying the claims starting with the second surgery because of "pre-existing condition". Didn't seem right to me since we've been with United HealthCare for 3 years. I called and they said it did look wrong but I'd have to call back on Thursday. So I called and talked to the review department. Turns out our policies group number changed on Jan. 1 so it flagged us all for pre-existing conditions. They unflagged us and she started to put through the denied claims. Whew! I had huge anxiety knots in my stomach from that one...that's all I would need on top of deductibles and copays...sheesh.