First of all: INSURANCE COMPANIES SUCK!!
(No offense intended to anyone who works for an insurance company...unless you are one of their fat cat CEOs)
This has been a day of the run around. Charlotte's catheterization was probably the easiest part of the whole day (and that wasn't all that peachy).
The short of it is: we will not begin chemo tomorrow. Instead, we are doing whatever we can to figure out what the insurance company will and will not cover and what our next options might be.
Dr. Khan is working with us and will do whatever he can to set an appeal that allows us to stay at MCV. I have also spoken with someone at Care Connection (thanks for the advice!) and they are going to try to help us navigate this process including figuring out exactly what the insurance company is and is not willing to do right now (Dr. Khan and I keep getting different answers from different people) and what we can do to get what Charlotte needs. The tricky part is that we do not have a lot of time. Her cancer is very aggressive and we need to start treatment sooner rather than later. We can't waste time with appeals. We have a "short list" of hospitals where Charlotte can get care. All are reputable but all are far from home (the closest still being Duke).
A friend of ours who works at the Library of Congress is planning to hand deliver copies of our letters to our Senators in Washington DC. I will be revising the previous letter with updated information. We shall see what happens. (Thanks Ginny!)
In the meantime, please direct your prayers to our advocates and physicians as well as to giving us the time we need to make this happen.
Somehow we are still holding it all together. Roger is working his heinie (sp?) off at Romp n' Roll and I apologize publicly for giving him major distractions yesterday and today. I have not been the most helpful spouse the last two days. I am home with the cathetered princess who has been such a brave and strong little girl today!
A few bits of good news: her follow up with the orthotic specialist was great and we may not need the brace much longer. She is also on a "regular" schedule and not needing laxatives. We do still have a fiber/flax rich diet but that doesn't hurt anyone, does it? :-)
PLUS: It's Wednesday which means it's LOST night. Also means it's Business Time. If you don't know what that means, go see Flight of the Conchords. Ha ha!! (That one's for Roger)!
A new batch of bracelets were delivered to Romp n' Roll today if anyone "local" needed to pick some up.
HUGS to all,
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