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.
So.
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.
Hot Damn!
FINALLY!!!!!!Lee has an appointment with the ENT group in Baton Rouge on January 31st!!!!!!
There's over $10G in the bank, waiting to cover everything that Medicaid doesn't (although it still might not be enough, depending on what, exactly, Medicaid covers), and we FINALLY might have an answer.
Lee's disease is progressing in much the same fashion as it has been all along. The one eye out of which she can still see somewhat is getting dimmer, her legs are going out from under her more and more often, and she's less and less able to work.
I wish to hell that we had gotten to this point a whole lot sooner, 'cause there is such a thing as "too late," y'know?
Great thanks go out to Feliciana Pharmacy and Ricky's Bar/Audubon Liquor for helping collect a nice chunk of that money in the bank, as well as the independently-owned BP station here in town, whose very compassionate owner has collected and donated almost two grand. He never tells me his name, he just keeps telling me to get ahold of Maury Povich... I never did get the end of that story --- somebody had called the show about Lee's story, Susan communicated with the producers, but then, nothing. So I don't know what happened there. I have personally written to Oprah and Montell Williams, but never received any response from either.
So cross yer fingers, light yer candles, rub your lucky whatever --- let's just all hope together that we have FINALLY found the doctor(s) who can fix Lee's brain tumor for good and bring her back to herself.
Thank you all, so much, from the bottom of my heart, for your love, your compassion, and your help. Just being lucky enough to witness a modern "miracle" of sorts like this has been a life-changing experience for me. Not a conversion, mind you, but it has restored a small glimmer of hope for the human condition.
FINALLY! An update!
Oy.
Okay, here's what I found out from Susan today:
1. Together, with the online efforts and the people here in town (including a really really great guy who is an independent owner of a BP station), y'all have raised about $10G!!!!!! With the reinstatement of Lee's Medicaid, it looks like we'll be able to swing whatever solution that the ENT group will come up with. And I hope to hell that it's SOON.
2. The ENT group in B.R. hasn't contacted Susan since Dec. 23rd, so Lee's still waiting for an actual appointment. I know that there's a lot of information to deal with about her case, it's not exactly lancing a boil here, but the longer they take, the more afraid that I get.
3. Lee, of course, is still doing the Mizz Bravado thang, and won't give me a straight answer about any of this stuff, when I ask about her health, her doctor appointments, etc., but Susan says that her headaches & fatigue are getting worse and worse, and she hasn't been able to work nearly as much since the holidays because her legs are going out from under her more and more often. I actually witnessed her legs failing her not too long ago, and it scared the hell out of me, but of course, Mizz Bravado played it off as just "tripping." Her eyesight doesn't seem to be improving or even stabilizing at this point, so it's just pure willpower that keeps her going and working.
4. With all of the wonderful and truly helpful offers and suggestions that we've received from great people at the University of Alabama at Birmingham, Tulane's Neurofibromatosis Clinic, and other medical facilities, I've been trying to push for Susan to get into contact with any and/or all of these places, but she & Lee seem determined to stay close to home. I just hope that all of you know how much I appreciate the kindness, the expertise, and the advice that y'all have sent our way.
5. As soon as Susan hears from the ENT group, I will let you all know what's happening next. I'd have posted about these issues sooner, but y'all know how it is when you work retail at the holidays --- Susan was harder to pin down than a hummingbird. And why post when you have no news? No one who wanted to help Lee got into this for entertainment or filler, so I didn't want to insult y'all with blank words.
6. I'm especially thankful that Lee has gotten her Medicaid back; I know that it won't cover *everything*, but hopefully the money that y'all have helped raise will be able to cover any gaps. I will always be grateful for and amazed by the response to our efforts here --- when so much else in the world seems so hopeless, real live human beings blow you away with the size of their hearts and their giving souls. And hopefully, we will still get Lee to the help that she needs IN TIME. Time is what scares me the most, for her sake, because tumors don't wait for anyone.
Thank you all, so much, for all that y'all have done and continue to do for Lee --- you have made such a difference in her life, in my life, in the world, period.
More news as it happens.
Local amazement
Y'know, when I started this thing, I figured that I'd get a much bigger response for Lee from my online buds (and their online buds, and so forth, 'cause that's just the kind of people that y'all are) than from the local community here, of which I'm not really a "member," so to speak, being the atheist anarchist hyperlexic weirdo from New Orleans, much less being POOR, but these people really have amazed me.
As is the usual with situations like this, often times much more is promised by "upstanding members of the community" than is ever actually delivered, but the ones from whom you actually ASK... They are the ones who bowl you over. And this thing has grown so much, so fast, that people I'd never even MET have jumped-in to help.
I wish that I could get access to find out who has donated what to help Lee, but since I'm only a depositor on the account, I can't get that information or even send out proper thank-you cards. So, direct deposits to the bank aside, there are three local merchants who have absolutely blown me away with their kindness & generosity (as well as their
patrons/customers, obviously) for Lee.
My local pharmacy, Feliciana Healthmart, and the owners, Mrs. Ginger & Mr. Jimmy, have been wonderful about not only passing out fliers with information about Lee, but also in keeping a contribution jar right next to the register, and every week since they put the jar out, it's been filled --- usually between
$50 and 70 bucks a week! Mrs. Ginger is one of the kindest, most big-hearted people I've ever known, not to mention the best pharmacist that I've ever had.
Ricky's (Audubon Liquor & Ricky's Lounge) put out a milk jug for donations, and gathered
$125.99 in one week! (And I gotta tellya, having bartended in New Orleans, the truth there is the same here --- LOCALS TIP THE BEST. Tourists don't tip worth SHIT.)
And even though I don't know anyone very well at the local BP gas station/convenience store (independently owned, affiliated with British Petroleum, yes, but run by very compassionate people who work their asses off), they put out a collection jar/jug for Lee from the very beginning, and have
already deposited $400 into the bank account, and when I went by this evening to thank the manager/owner for participating in the fund raiser, he had ANOTHER jar full of bills to take to the bank!
And, I might add, he reiterated my long-held view of retail bidness... The TOURISTS don't drop a DIME on a good cause or for good service, but the LOCALS always give as much as they can. And as I've always known, and as most of my online friends have always shown, from Katrina on down ---
those who actually have the least are the FIRST to give, and to give the most of what they have! The rich want to keep it to themselves, the working-class and the poor have the compassion to give all that they can to help another, it's just that simple.
So if y'all ever find yourselves in our neck of the woods, please drop by these bidnesses and show them some love.
Also, and I can't let this go by without comment --- Lee's fellow employees at Fred's have reached into their own not-so-deep pockets and slipped money into the bank account on the sly, because even though none of them are rich, they love her too much to not do SOMETHING. It's no small wonder, when I became a regular resident up here (my parents moved up here in '87, but I was only a visitor until '03, when I came back from Miami) --- that the people who work at Fred's were the first people to reach out to me with anything resembling friendship.
Also, when it comes to who jumped-in-first, I've heard a lot of talk about how every church in the area has SAID that they were going to do everything possible to help Lee, but since I don't know who deposited what, I can't really hold anybody's feet to the fire about whether they delivered or not. When you're raising money like this, you can't EXPECT anything, you just have to be grateful for what does show up. But Grace Episcopal Church, one of the oldest churches on this continent, did call me and promise to contribute, very early-on in this fundraising campaign, and we know that they actually delivered. I'm not very good, myself, at communicating with religious leaders, obviously, but I at least have the manners to say "thank you" when they help someone about whom I care very much.
Now, those of you who are familiar with my regular blogging and my comments on other blogs know that there is no love lost betwixt myself and the local school board, after I was illegally denied employment as a substitute teacher
and blackballed from subbing in TWO parishes because of my atheism.
And when it first became known that Lee's brain tumor was reaching life-threatening levels, a certain member of the school board was the first person to "volunteer" to Susan that he would move heaven and earth to raise money, contact people with money, and try to help find the right surgeons/facilities. When nothing was heard from him or his after a couple of weeks, Susan gave up on him, as he is widely known for being far more about politickin' than actually DELIVERING.
But since I put out these fliers all over town and in the neighboring communities,
kids in the elementary, junior-high and high schools started taking those fliers in to their teachers and principals, saying, over and over again,
"WE HAVE TO DO SOMETHING TO HELP HER!!!"And thus said school board official was shamed by "his" own students into finally RETURNING SUSAN'S CALLS (a week after she gave up on him), but again, nothing came of it. At least, that was the last that we heard of the school board wanting to help.
Then today, I get a phone call from a lady who identified herself only as being "from the school board," who wanted to "let somebody know" that they had just deposited money into the account. Isn't that just wonderful? When you least expect it... People finally do what they've promised, and they make sure that you know about it.
Oh, sure, I'll catch hell again for editorializing on this blog again, I'm sure, but y'know, sometimes you have to take that risk, 'cause the truth needs to be told. There have been DOZENS, probably over a HUNDRED anonymous donors directly to the bank, and online donors who don't want to take any credit for anything, who just want to HELP --- and they've never asked for so much as recognition for their efforts. After all, if you're doing it for the "credit," for the attention, then it's not really "charity" at all, is it.
Now, on another topic, what's got
me worried, as wonderful as it is that the "Save Lee" movement has spread to multiple parishes, is that certain people, like the aformentioned
TICK, might be putting out "fundraising" jars/jugs/raffles/other schemes
IN LEE'S NAME, but that the money will NEVER reach the Bank Of St. Francisville.
And no, I don't personally have the energy, time, money, or mileage left on my truck to go hit every establishment in the tri-parish area that MIGHT have a collection jar out, but believe you me, kids, we're keeping an eye on said
TICK.Did I mention that, as soon as she found out that we were doing this, that we were trying to
SAVE LEE'S LIFE, that the
TICK called Lee
IMMEDIATELY, making that girl feel GUILTY and really SHITTY ABOUT HERSELF,
because OTHER PEOPLE WERE DOING THINGS TO HELP HER, of
our OWN FUCKING VOLITION I might add, and
DEMANDING A ***CUT*** OF THE PROCEEDS?!??!!??!?There have GOT to be laws against this shit. And once we can get Lee the surgery that will save her life, you can betcherass that I'll be exploring every possible legal option to have the
TICK incarcerated for a long, lonnnnnnngggg time.
So, we have good news, and we have iffy news. Sometime this coming week, I look forward to giving y'all some idea of how much money has been raised overall, as well as an appointment date for Lee with the ENT group in Baton Rouge. They've been going through all of her medical records, her CT scans & MRIs & x-rays, etc., for a couple of weeks now, and I'm hoping that they'll come up with a solution that will not only save her life, but allow her to remain HERSELF, above all else. 'Cause as ornery and snarky as she can get sometimes, Lee is definitely a one-of-a-kind original who cannot be lost.
Update 12-13-06
Alright, technically, it's the 14th by now, but whatever.
Talked with Susan last night, and here's what we know thus far:
The ENT group in Baton Rouge, apparently, are specialists in tumors of the head/facial cavities, and since the tumor on Lee's face is connected to the tumor in her brain, they might be able to find a better solution than your standard neurosurgeon. Susan expects to hear from them at least by Monday, as they've been going over Lee's films/MRIs/CT scans, etc. for the past week and a half. And since there'll be three or four doctors covering her case, perhaps they'll manage to come up with a treatment which no one else could imagine.
I'm trying not to get freaked-out by the delays, but when you go into something like this with a literal deadline of a matter of months to save someone's life, every moment not spent in motion seems wasted.
Lee is, as usual, acting like there's nothing in the world wrong with her, carrying on working as much as she can, although Susan makes her take days off when it's obvious that she needs the rest. Her vision (legally blind in one eye, completely blind in the other) is still going downhill, so there's no telling how much longer she'll be able to work at all. She hasn't, to anyone's knowledge, had her legs go out from under her lately, and thus far has had no seizures, but with a situation like this, it seems like only a matter of time.
When I see somebody like Lee, a hard-working, self-sufficient human being who's never wanted anything more than to have her own life and to take care of the people she loves, go through so much, after busting her skinny ass to make a living --- and then have to listen to maggots who call SSI/SSDI "welfare" --- it makes me wonder if there aren't separate species of "humans." There are those with souls and consciences and hearts, and then there are those who seem to operate on nothing more than a nematodic nerve string.
Y'ever notice, when certain politicians come into office crowing about "reform," that it's always the disenfranchised, the working poor, the elderly and the disabled who are the first to get screwed?
History doesn't just repeat itself, it seems to be stuck in a 20-year groove. The "societal" drift in this country at the moment reminds me far too much of when Reagan turned all of the poor/disenfranchised mentally-ill patients out on the street and CREATED "the homelessness problem."
Anyway, more news as I have it --- and great thanks to all of the people online and here in town who have reached out to Lee and who have done so much to help me and to keep this blog functional. Ricky's liquor store patrons chipped in, over the past week, over $125 into the "tip jar." The pharmacy I use has never failed to collect between $30 and $70 almost every week since we started this thing. And as I hear from Susan how much has been contributed in total, I'll be more than happy to let y'all know, because y'all have given so much of yourselves, your time, and your hearts to Lee; granted, money is a crappy way to measure gifts from the heart, you can't quite quantify concern or love, but at least with the financial numbers, we'll know how much has been accomplished thus far.
Also, Susan expects to hear from Medicaid shortly as to the disposition of Lee's case with them, and how much they'll be able to help out, once the surgeons/doctors are finalized and we know what's to be done. Personally, I want to know how quickly these tumors are growing, because I'm hoping that Lee has more time than was originally quoted. You never want to believe them when they give you a finite number, do you.
None of the corporations that
I've contacted have been able to come through thus far, but hopefully Fred's will let Susan know something soon. I am glad that the flier that I sent to the Medicaid office reached someone with the compassion to do something about it.
More news as it comes to me. Thank you all again and again --- it never fails to amaze me how good and generous and truly caring that people can be, even in times like these.
Oy.
Okay, so here's what I know thus far:
They went to the specialist in Shreveport, and he has referred them OUT, to an ENT practice in Baton Rouge (ear nose & throat). Seems utterly illogical to me, seeing as how the original description, via Earl K. Long, was as I stated to y'all at the very beginning --- BRAIN tumor, in addition to the outward facial tumor(s), pressing down on 8 of the 15 major nerve branches IN her brain, and involved in every single major blood vessel INSIDE THE BRAIN.
But now, all of a sudden, the specialist wants somebody ELSE to focus on the OUTER tumor, as if the brain tumor isn't as important. Susan is following his directives, at least until they hear something from the ENT group.
The Medicaid should kick in very soon, hopefully.
I'm still pushing the Tulane clinic, because I think that they would be able to offer far more options and better technology/specialization in Lee's disease. They have an entire CLINIC just for neurofibromatosis, which seems far more logical to me than this ENT thing.
It's
all a clusterfuck right now. I'm hoping that we'll know enough after the ENT visit to finally commit to a plan of action for Lee, and that Lee will know then what she wants to do, and will actually follow through with it.
Y'all are beyond amazing, y'all are the reason that I still believe in doing these projects. I'm just so glad that I have so many wonderful people in my life who are willing to allow me to try and help people who really need it.
So.
I don't know as of today how much money we're going to need, with the Medicaid kicking-in, or if what's already accrued in the bank is enough or too much. If it isn't needed directly for the actual surger(ies), however many there may be at this point, it will most assuredly still be put to a good purpose in Lee's physical therapy and aftercare, which is generally exhorbitant, especially if it's not covered by the Medicaid. IF there is any money left over, I will refund it to you all in proportion to what was donated, or direct it to whatever charitable institution that y'all deem necessary. The checking account is still in Susan's name, so once we know what the next step will be, we will most certainly have a conversation as to where the rest of the money should go, if it is not needed to cover Lee's medical expenses.
Okay. So that's what I know as of this morning. And yes, it's very consternating, it's aggravating, but so is life. I just wish that I could hog-tie Susan to a chair and get ALL of the details out of her; most of our conversations are granted less time than it takes for her to hustle a carton of xmas decorations across the Fred's floor. Getting a straight answer out of Lee is like nailing Jell-O to a tree. Hopefully, by the time of my next post, I'll have much more definite information for all of you.
With the wonderful options that have been offered, from UAB to Tulane to people who have been willing to drive Lee cross-country to any hospital necessary, I've been so hopeful that Lee would be able to take advantage of the kindnesses and medical help offered. Please, do not think that we have cast these offers aside like so much junk mail. I've printed them all out for Susan and Lee, I just don't think that they've had time to properly consider those options in comparison to what is being offered here at home, or if they have, perhaps it is just a matter of real-life constraints that keeps them from responding.
Ironic, really, that communications would be so troublesome for me, but such is life, or at least MY life, it would appear.
Again, more news as it happens. Thank you all so much.
Pro/Con
On the AMAZING front, I got a phone call this morning from the lady who is the Deputy Director of the state Medicaid program, telling me that she'd gotten the flier I'd mailed her department, and she'd viewed this blog
("particularly noticed the... um... language...") and that from what she'd read, that Lee definitely qualifies for this new kind of Medicaid that nobody's ever heard of, but that's not what matters ---
LEE IS GONNA GET MEDICAID!!!!!!!Now, that won't cover everything, I'm sure, because most private doctors in this state REFUSE to take Medicaid, but if the specialist who has pledged his work pro-bono comes through, we might be able to cover the majority. Medicaid will probably cover all of the hospitalization costs and in-hospital therapy/recovery/rehab, and then we'll figure something out about the home-care/after-care. As to the anaesthesiologist, nurses, and any other surgeons who may be called-in for the procedure(s), it's still up in the air.
Now, on the STILL DON'T KNOW front, Susan & Lee headed up to Shreveport eaarrrrrlllllyyyy this morning, I got 'em on the phone while they were on the road to tell them about the call from the Medicaid lady, but I haven't heard from them since.
When I got home around 7:30P CST, Susan's cellphone was turned off, so I assumed that they were either out of range of towers or asleep. Hopefully they got a motel room for the night and crashed out, and will be home tomorrow. OR, more testing was needed, and they had to stay over to do that in the morning (
this morning, if you go by the time mark on this post), and hopefully I'll hear from them sometime today.
Most of what happens from here on out depends on that specialist in Shreveport, so I'm kinda on pins & needles at the moment, and I can't wait to give y'all the (hopefully) good news, 'cause I know that there are dozens and probably hundreds of people out there in the blogoshere who care about Lee and who want her to have the life that she deserves.
When we know what the specialist has said, and has recommended, based upon the wonderful offers and advice that we've gotten from UAB (University of Alabama At Birmingham), at Tulane's Neurosurgery/Neurofibromatosis Clinic, and about a charity hospital in Mississippi that may be out fall-back option. Susan took all of that information up there with him, so hopefully he can advise them as to which program will be the most appropriate for Lee's current condition and for the most positive prognosis.
SO --- more news when I've got it, I'm going to download the PDF for the Medicaid application, which I will be getting to Susan as soon as they get up/get home/get ahold of me & let me know where this thing stands. Great many thanks to all of you who have pitched in, not only financially, but in way of information, education, conduits to all of these amazing programs, and in way of emotional and spiritual support. To all of the Fairy Blogmothers & Blogfathers, to all of the wonderful humans with whom I've been so fortunate to intersect and who have been such a huge help to me, and to Lee, I thank you, so much. With all my heart.
I am still overwhelmed by this whole amazing open-hearted response to Lee's situation. Just when you think that the world can't get any crappier, while you watch Katie Couric verbally fellate the Bush Regime on network television, when you think that there's no hope left via ANY of the "proper channels" --- there y'all go, amazing me all over again.
Thank y'all. So much.
