We went to see the oncologist at St. John's yesterday. I'd had 2 days to think on the Siteman Center treatment plan vs. the St. John's treatment plan. Bottom line -- I'm confused. They are just so different. Many of the differences don't really matter a whole lot, but one does -- the dosage of radioactive iodine given. So I brought up my confusion and frustration. How do I know what's right? Why don't they know how to treat it? I was in tears...
Siteman only sees typically 5 kids a year. No one else in St. Louis treats kids for thyroid cancer. Is it that much different than adult thyroid cancer? Well, kids typically present with much more advanced cases. Megan had 4 hard tumors, spreading to lymph nodes and is possibly in the lungs. That's not typical in adults. When it is, it's much more complicated to treat. St. John's sees an equal amount of thyroid cancer patients as Siteman, but Siteman includes the 5 kids a year. Plus, their nuclear medicine dr. doesn't agree with the Siteman Dr.'s dosage plan for Megan (and he doesn't like the dr. either). Siteman wants to give a small dose and St. John's a small dose and 2 days later a large dose. So, the oncologist agreed we need a third opinion. I said I'm open to any option -- in-state or out-of-state. He said he'd call a Dr. friends at St. Jude in Memphis and MD Anderson in Houston. He would have to call them, send her case information and get a response. It would take at least a week before he'd have more information.
So I went home and got on-line. St. Jude doesn't really seem to specialize in thyroid cancer either. They have "hard tumor" clinical trials, but none that are specifically endocrine. They do consult with doctors. I guess that's part of their protocol - sharing knowledge with other doctors for treatments to be done in their own home hospitals. When they choose to take a case, it seems like they have to participate as part of their clinical trials. The good news is - it's free. Insurance pays their portion and the rest is paid for through donations. Lodging is also covered. That would be a huge bonus. Plus it's only in Memphis.
MD Anderson actually has a whole pediatric thyroid cancer program!!!! They are one of only a few in the country that specialize in this cancer in children. Amazing! Of course, they wouldn't be free. I guess it would be out-of-network coverage and a higher $15,000 deductible per year. Maybe they could consult with the oncologist and help direct the treatment at St. John's? If not, maybe we go to Houston? It's a 14 hour drive, plus stops. Carol already mentioned Wings of Hope for possible flight? Ronald McDonald House? My aunts co-worker friend's brother in law could possibly get us free hotel stay when necessary??
Gosh, so many complicated thoughts are in my mind...
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