Saturday, March 29, 2008

Uncertainty Ahead

Well, Dr. Sholler in Burlington, Vermont said that Jovee would qualify for her clinical trial. Insurance company said they'd pay if Dr. F here at Sacred Heart deems it necessary and justifiable to go over there for treatment. Dr. F said she'd call and talk to Dr. Sholler and also bring Jovee's case up to the COG (Child Oncology Group) on Tuesday, April 1st. Dr. F also said there's another route that we could take instead of going to Vermont. What Jeannine and I don't understand is why wasn't this supposed route not mentioned to us when we inquired about if there was anything that we could do after the Accutane, which we were told there was nothing. So with Vermont, if this is the course that we decide for Jovee, we'd go there early April, start on her med and go there about once a month for check up. Yes, the cost, if Jeannine, Jovee, and I went would be quite spendy. Whatever. It's just money. Or credit. We could wait 3 months and do her treatments in San Diego (that's when this med is going to be accepted in San Diego). I really don't think, well, I'm convinced that we don't do nothing to try to kill the remaining cancer.
Just the thought of her losing her hair and having her go through chemotherapy again just bums us both out. A lot. She'll receive cyclophosamide (which she already had) and topotecan (new chemo for her - which could be good because it might kill the NB). Anyways, just a lot of wind taken out of us to think that we basically start all over again. The clinical trial with nifurtimox, cyclophosamide, and topotecan will last approximately 6 months. Hospital stays, high fevers, lots of money, possibly long flights in the air to Vermont, zero ANC levels, away from Tyson, Brooke, and Bennet, etc, etc, etc, etc....been there, dont' want to do all that again but if (which there is no guarantee) just if it kills the NB, we will gird up our loins, fresh courage take, and do what we will have to do for Jovee.

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