And The Winner Is:

"Bob, Tell us who the winner is going to be.  Will it be the illustrious Dr. Crazy Hair at UW and the McCast we've all grown so fond of or the mysterious 'super-experts' at the National Institute of Health (who better darn well be good if they're expecting us to travel 3000 miles to see them)?"   


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And the winner is......NIH!!! 

I'm settling there.  It's time to settle.  Or else Andrew will kick me in the head from going back and forth and obsessing about every little detail with him each and every night before finally dozing off mid-quandary (when he'd probably rather be doing other things... like...  sleeping).

I had a really encouraging conversation this week with the research nurse involved with  the Para/Pheo Study at NIH, who I believe does a lot of the coordinating of patients.  Within a minute of talking to her I knew this was the way to go.

I am not chasing zebras.  She assured me of that immediately  It is my belief that while the doctors I have talked to here are excellent and proficient doctors that they aren't maybe as current on some of the more recent research about paragangliomas.  A lot of new information has come out even just in the last few years and with a diagnosis as rare as this I think it would be easy for that research to go unnoticed.  Do I think that they could have done the surgery just fine?  Absolutely.  Do I think that I would have had all of my questions answered and/or been set up for follow-up down the line to see what may or may not happen after Tomas takes a hike?  No.  And I think that within the parameters of TriCare and the referrals process it would have been difficult, maybe not impossible, to find a doctor who knows enough about Paras for me to feel comfortable.  This is the way to go.  It might not be the 'easy road' logistically, but I think in the end it will allow me to 'rest easier' knowing that I have ALL the information that I can get about my Tumor and what that means for my future.

The travel and the logistics will be difficult.  I hope, that in the end, it will be worth it to know that I covered all of my bases.  Even if I find out that I DON'T have any need to worry about the 'extra stuff' with gene mutations and recurrence and what not I will feel relieved to hear that from THE experts in this field.  AND if I do deal with this on down the line I'll already know where to go to be taken care of from all angles of these cases.

I even found out that with some pumping and dumping there is a good chance that I'll be able to continue to breastfeed and that does this hormonal Mama's (who doesn't know what to do with a baby outside of that option--though I'm no Lactivist to be sure) heart good.

On top of all that, my experience so far is that these people go the extra mile to make sure that a patient is informed and reassured about care there.  This amazing woman called me on her cell phone while driving to a conference  in another state.  The ensuing conversation was a little choppy and humorous because the state of Pennsylvania's cell phone signal is apparently spotty at best, but still...  That's service.

There will be an initial visit after I make contact with NIH for the scans and full work up to make sure that this is ALL we're dealing with, to find out about the gene stuff, and to get a good solid look at Tomas really for the first time since my scan options have been limited because of the pregnancy.  While we're there we'll talk to the surgical team and find out the whens and hows and why are we doing that's of the surgery which will occur sometime after the testing. 

Having this piece settled is a relief.  I've been agonizing over 'the right decision' for so long.  I think it's time to hitch my wagon to this and make it 'the plan' if only to hold onto my sanity.

(Since this entry isn't at all funny, I will simply add here that when I found out that C's Kindergarten teacher's name was "Ms. Thomas" I immediately thought, "Oh Great!  She has the same name as my tumor!!!!") 

For those of you who pray, I do have one thing for you to especially pray for now that we have this settled:  I want to look forward to my new little miracle's arrival.  I want to think all things pink and soft and tulle-y and anticipate her little nails and ears and eyebrows and coos and smiles without immediately jumping to "After the baby comes, I have surgery," in my brain.  To be sure, once she is here she will be cherished.  To be sure she is already especially cherished--maybe even more so because of the x-factors that landed in this pregnancy.  It has been hard for me though to let myself feel excited without feeling trepidatious either about the tumor and the treatment and all that will follow or about another thing coming out of left field that could be harmful for me or baby.  Please pray that I could experience the joy of expecting this little girl (who for now is called Beanetta Fae Hillary Beula R. because of the many people who love her with us ;)).   And you know...  also pray that all would go well with this surgery and there would be no surprises and that I could, ya know...  Be around for years and years and years with my gorgeous trio of R. princesses.