Friday, February 02, 2007

2/2/07 Update

Wellllllllllllllllll, finally tracked Susan down --- Lee went to her appointment on the 31st, and the wunderkind at the ENT group is being less than forthcoming.

Here's what Susan told me: Lee has an appointment to see him again in 3 weeks. He doesn't think that surgery is an option at this point. (AT THIS POINT.) Looks like it'll be radiation to try and shrink the tumor, see if that gives her any relief from the pressure on her brain and her nerve branches. She's been given some kind of medication(s) to help with the headaches and the dizziness and the leg pain. Hopefully, by the next appointment, they'll be able to tell Susan & Lee where they're going from there.

The brain tumor is, as we've known all along, intertwined with the tumor on her face. One of those lovely little bonuses of neurofibromatosis. Because of the strength of the connection between the two, the ENT guy doesn't think that surgery can extract the brain tumor without causing debillitating damage to the rest of her head and possibly her entire central nervous system.


That's what I know as of now.

Not altogether heartening.

I wish that I could give y'all better news. If only we could have gotten to this point SOONER.

I don't mean "this point" in terms of Lee's prognosis as of now, I mean this point as in THIS DOCTOR, or any doctor who would've at least TAKEN A SHOT AT IT. We had so many great offers of help from U of Alabama at Birmingham and Tulane --- and never got to accept them. We've had so many wonderful people sending us information and leads and help --- and now it seems like it was all for naught. If there is any justice left in the universe, the radiation will be the miracle pill.

If you believe in miracles.


At 8:08 PM, Blogger The Fat Lady Sings said...

You know - we have the best, most cutting edge medicine available right here in America; and yet we are unable to provide that medical help to our citizenry. What all those insurance companies and big pharma and million dollar surgeons don't think of is what will happen to their pockets if all those little people they eschew suddenly up and died. Rich people cannot sustain themselves. In no time at all their fairy empires would collapse and they would collapse with them. I am sorry to hear Lee won't be having that surgery. I too will continue to hope for the best. Miracles do happen, honey. That’s why people believe in them.

At 12:48 PM, Blogger Terrible said...

As allways the Fat Lady hits the nail on the head.

At 2:49 PM, Blogger mike said...

Any updates about Lee's treatment?

At 5:03 PM, Blogger Anntichrist S. Coulter said...

Blogger just ate the response I spent 20 minutes writing.

The dog ate my homework.

Lee's going to die. I don't know how else to put it. The fundraiser was for naught, the money is still sitting in the bank, and she and Susan have refused to even TRY going to other doctors or other hospitals, like the University of Alabama at Birmingham, where they do the FDA trials, or the neurofibromatosis clinic at Tulane.

Lee seems to have resigned herself to "whatever happens, happens," and nothing that I've said or done has done anything to change her mind. I am obviously too fucking naive to do stuff like this, because I thought that if I got y'all to help, and y'all have responded with such love and generosity, it still bowls me over --- I thought that we could FIX THIS. I never thought that Lee herself would be the one to refuse access to some of the best medical help in this country.

I know that this is supposed to be about Lee, not about me, but since I'm the one who started this shit, I'm the one to blame. I dropped the ball somewhere, because she's still going to die. My lack of "people skills" can't be fixed with bullshit and bluster this time. I can't make this go away. I wish that I could blame it all on Earl K. Long (and believe me, they are a huge chunk of the problem), I wish that I could blame it on ANYBODY, but I can't. I fucked it up, and she's still going to die. Y'all have been amazing, and have never given up on Lee or me, and I don't even know how to properly enunciate how wonderful that is or how much I appreciate it.

So, last I heard from Susan, they're not even going to try doing the radiation. Lee is on medication for the migraines and the dizziness, she's getting blinder by the day, and while she still works one to two days a week when she can, it's not going to get any easier or any better. I don't know where else it can go from here, nor do I know what they intend to do with the money.

I'm sorry.

At 8:39 AM, Blogger Bitty said...


You didn't "fuck it up." You didn't. You did everything YOU could, but it wasn't all up to you.

One person can make a difference, but one person can't always fix things.

Please don't beat yourself up. It's not your fault.

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At 8:13 AM, Blogger barb michelen said...

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At 6:37 PM, Blogger Senhora Sweeney said...

Your passion for helping your friend is very admirable. My daughter has NF and it is an unpredictable, scary disease. I admire your courage to stand up and face it, and not be frightened by it. It's hard to believe in a age when you can keep almost dead people alive for so long, that there are still illnesses that doctors can't treat.

You have done important work raising awareness about this disorder. There is medical research being done to better understand the disease, but truthfully tumor removal is pretty much the only tool in a neurosurgeon's toolbox at this time. Radiation treatments are seldom effective and can kill you in and of themselves, so I'm not surprised that they're not going that route.

I hope your friend uses the money for a trip to Hawaii or something. She deserves some little perk for having walked through her life with such difficult circumstances.

Thank you for your work.


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