November 23, 2004- Appointment & Kids' Results

Well at my appointment today Dr L went over my ER visit and let me know that the blockage in my right kidney doesn't seem to be a stone and the infection is very mild which means I shouldn't have the kind of pain I'm having. So we're thinking it's cancer or pheo related. Ugh, more problems. I'm still taking my meds for now until they are done.

She gave me a copy of my medical records and also went ahead and faxed a copy to Dr LK in Tampa. His secretary had left a message earlier saying that basically they wouldn't do any tests this visit because they didn't have my medical records ahead of time and I would have to come back AGAIN the next week. Now, they shouldn't have any problem deciding what tests to run on me since they have my records and hopefully save me a trip back down.

Dr L also doesn't agree with my decision to get my pheo surgery in Tampa simply because it is going to be VERY expensive...WAY expensive and she hates us having those high bills but she is behind me no matter what choice I make.

Then she asked me to please have a seat. Then she started to cry. I told her "This can't be good" and through the tears she told me that the good news was that Lil Man's test for MEN2A came back negative. So he doesn't have it, he never will, and he will never have to go through any of this. The bad news was that BOTH Big B and Sis do have MEN2A. Both of my children now have this awful mutation that will effect the rest of their lives. Tomorrow they have to have blood drawn at the lab and then on Sunday they will have to do the 24 hour urine test. What we have to find out now is if either of them has medullary cancer or pheochromocytomas. If they do then this all starts again. IF they don't then they will just get the thyroidectomies and will NEVER have to worry about medullary cancer. The pheos will be something they will have to be checked for for the rest of their lives but the cancer at least will be no threat.

I'll be honest, I won't even allow myself to even consider that my kids don't have cancer or pheos. I won't set any of us up with any kind of hope like that. I told them it's highly unlikely that they will have cancer or pheos but in my heart I'm already trying to ready myself for it. I won't hope for anything at this point and fall on my knees with heartfelt thanks if I am finally lucky enough to have my children not be dealt this blow as well.

Both of the kids took it okay. Sis is scared because she hates giving blood and the whole thought of surgery is scary obviously but I told her I will be there for her through all of it. Big B basically made jokes about the whole thing so I honestly don't know how he feels about it. Neither one of them held it against Lil Man though that he doesn't have it and Sis even said "I'm glad Lil Man doesn't have it".

So tomorrow they have blood drawn.

Sunday they do the 24 hour urine test which I drop off on Monday.

Tuesday (November 30th) thru Friday (December 3rd), Lil Man and I will be gone to Tampa for my appointments.

The kids should have an appointment in Tallahassee, Florida with a Pediatric Endocrinologist the week after that to start discussing their surgeries. I'm hoping to have the surgeries done during their Christmas vacation so they dont have to miss any school.

Possibly the middle of December I will have my first pheo surgery.

The next week I will have a follow up with my doctor for me.

Then the last week of December hopefully surgeries for the kids.

For everyone else the holiday season has begun. For us it is already over because life is going to be going full force whether we like it or not.