Friday, May 22, 2009

Quaking and Shaking With Good Results

On Tuesday we flew to Los Angeles to visit with Jules's doctor. Jules has an intracranicular schwannoma, otherwise known as an acoustic neuroma, also known as a benign, operable brain tumor that normally presents as a vestibular schwannoma, but in his case doesn't, because Jules is a different kind of kid. Period. The words "benign" and "operable" are what make it possible for me to keep breathing.

Now why would we travel all the way from San Antonio to Los Angeles to see a doctor? Don't we have doctors here, you ask? Yes, we do. And we saw several of them. They said:

1. your son has a brain tumor
2. if you had caught it sooner we could have saved the hearing in his right ear
3. he has a genetic disorder called neurofibromatosis type II
3. he will likely develop more tumors and could end up completely deaf with facial paralysis
4. he will possibly need spinal surgery
5. we need to do surgery to remove the existing tumor....let's get the ball rolling. we don't want to take the "wait and watch" attitude with a patient this age....(jules was 7 at the time)

Now then, all of this information? Had me crazy. Truly, I was running around with my hair on fire screaming, "My kid has a brain tumor! Somebody do something!" And the somebodies, when they bothered to return my calls at all, agreed that yes. we. should. do. something. In 3 weeks we can see your son for 3 more weeks we will bless you by having you sit in the waiting room for 2 hours (because we are busy and important people) and then spend 2 minutes to go over the results of the test....which we will not remember having ordered because it was so dang long ago...and who are you, again? And please, do not hesitate to call us if you have any concerns or questions. By the way, we do not mean that. Please do not call us. We have failed to tell our nurses and receptionists to expect your hysterical calls and they will not cooperate, and in fact, they will most likely be quite snippy with you. We train them to be this way. Otherwise we would just be calling people back all day instead of visiting with pharmaceutical reps in short skirts and spending 2 minutes with patients in between. We might have to get to the office on time or cancel a golf game. We'd prefer not to do that. In the meantime, read over this little pamphlet - it explains the risks of the brain surgery we want to do on your son. Oh, and also, here is an out-of-service number for a geneticist. Because this is the only geneticist we know. When you discover that the geneticist no longer works at the UT Health Science Center....feel free to call us for another referral. We will not call you back. Because we are busy and important and hey, it isn't like it is OUR kid with a brain tumor....You should just find a geneticist on the Internet, or something. She won't bother seeing you but she will tell you, on the phone, that the odds are overwhelming that your son has neurofibromatosis Type II and she will recommend that all of your kids undergo testing. She will also let you know that the testing isn't covered by insurance but it is extremely important that you do this testing because you don't want your other kids to go deaf, do you? Because if you had caught it sooner they could have saved some of his hearing....why didn't you catch it sooner?

Do I sound bitter? I hate it when I sound bitter. So let me soften it. The wonderful, sweet, adorable, and okay I admit it, handsome doctor who found the tumor is definitely on my A List. The problem is that Dr. Charming is "just" an ENT and had to refer me to the Hot Shot to handle what he discovered in my kid's head. And when the Hot Shot (known around here as Dr. Jack-ass-on) wouldn't call me back? Dr. Charming called him for me. He is a doll. Also - I would be remiss, while talking about nice doctor-types, not to mention our good friend who is a GP. When I decided I couldn't wait 3 weeks for the results of the spinal MRI because I couldn't go that long without sleep, our friend called the radiologist and got the results, just by identifying himself as a doctor. Then he called me immediately. I was sitting in the parking lot of the Wittee Museum. My cell rang. I said, "Hello" and he said, "There are no tumors on his spine." He didn't say "Hey, this is Steve, how are you doing, well, I got the results back....." He just said, "There are no tumors on his spine." Because he is a parent. And a friend.

Also, I find it hard to maintain a constant state of bitterness while also acknowledging the fact that The Universe used that quirky little fate trick to make sure we ended up exactly where we needed to be, and just in the nick of time. In the middle of all of the hysterical phone calling, my cousin, an anesthesiologist, came down from LA to help move my aunt into an assisted living facility. He had his hands full but managed a phone call to me where he casually said, "You know, there is a place in LA where they treat more of these kinds of tumors than anywhere else in the world (really? and Dr. Jack-ass-on failed to tell me this?)- if it were me that is where I would take Jules. It is called The House Ear Clinic."

So we called the House Ear Clinic and they said, "Can you be here on Friday?" and I was like, "This Friday? What about the 3 weeks of waiting we should do to make you people feel important?" and they were like, "We can even see you Wednesday if you can make it here that soon." Wow. So we hopped on a plane with our frequent flyer miles and headed to The House Ear Clinic. Based on the fact that Hot Shot Jack-ass-on had told us Jules needed surgery and he needed it NOW (now being a very relative term to Important People) we were prepared to have to make a second trip to LA for surgery. Because the surgical procedure used worldwide to remove this type of tumor? Was developed at The House Ear Clinic. The end result is a mortality rate the same as an appendectomy procedure - down from a previous 60%. The local neurosurgeon couldn't tell us how many of these tumors he'd removed (not many) whereas The House Ear Clinic could tell us how many they'd removed in the last month.

When we arrived at The House Clinic they sent Jules for an MRI at St. Vincent's Hospital across the street. Why? We had already done MRI's at home - 2 on the brain - 1 on the spine - all under sedation. They were day-long events that began with waiting in waiting rooms, waiting in admitting offices, waiting in the pre-procedure room, waiting for the anesthesiologist to respond to the page, waiting for the machine to be repaired, waiting for Jules to go in, come out, recover...waiting waiting waiting for the results, which nobody would share with us because we were just the parents and we had to wait until Dr. Jack-ass-on was good and ready to share it with us, which even though the radiologist read the film within an hour, would be in about 3 weeks.

The House Clinic simply said, "Well, we like to read the film from our own won't take long."

Right, we thought. We had been conditioned to just accept that stupidity was part of the procedure. But guess what? We went in. We registered. Jules had an MRI (without sedation - they had insisted on sedation at home). They printed the film and we carried it back across the street to a waiting Dr. Brackman. All in about an hour.

"Well, look at this!" he said immediately, after a mere glance at the film. "This is interesting. Jules's tumor is on the cochlear branch, not the vestibular branch. That is unusual. And it explains his sudden loss of hearing. Nothing could have been done to save his hearing in that ear." Ahhhhh, folks. I started crying. I had listened to 3 people tell me that if only I had caught it earlier they could have saved his hearing. They had all looked at the same tumor in the same head. And none of them, the radiologist included, had noticed that the tumor was not on the vestibular branch. They saw what they expected they'd see (from reading literature, no doubt). Even though they had all expressed surprise that Jules could walk a straight line and was not experiencing dizziness...none of them had bothered to ask the question, "why?" Because normally this tumor is on the vestibular branch. And normally, it has to get pretty darn big to rub up against the cochlear branch and cause total deafness. And Jules's tumor was pretty darn small. So, uhhhh, shouldn't someone have said, "why?" The fact that it was supposed to be on the vestibular branch didn't change the fact that it wasn't. The fact that he could, in fact, walk a straight line...and he could not, in fact, hear a damn thing out of his right ear SHOULD have made them ask why...why...maybe the tumor is on the cochlear (hearing) branch, instead. But no. All they said was, "We need to get this thing out right away! Of course, we don't know where it is but that doesn't matter! And if only you'd caught it sooner we could also have done this and that procedure to save his hearing!" As if having a uterus didn't already cause me enough guilt.

So, yeah. Dr. Brackman glanced at the film and immediately saw the obvious answer where nobody else had even seen a question. And he relieved me of massive amounts of guilt with the simple statement, "Nothing could have been done to save his hearing." Then he said the unbelievable. "We're just going to take a wait and watch approach. Who knows? This thing might not grow and it isn't currently causing him any problems. We'd take it out if we thought it was going to damage his hearing but its already done that."

What? Dr Jack-ass-on said that was the last thing we wanted to do. But Dr. Jack-ass-on didn't know what he was talking about and didn't want to admit it. He didn't want to say, "Hey guys, I really don't have a lot of experience with this. Why don't you take him to this famous place known to ENT's and Neurottologists everywhere? Look, the phone number is right here in my rolodex." I have no doubt that if it were Dr. Jack-ass-on's kid? He'd have had him sitting in Brackman's office.

"And what about his neurofibromatosis type II?" we asked. "Can you test him here? We know all of the kids need to be tested...."

"Why would you want to do that?" Brackman asked. "The test is inconclusive unless it is positive - and it wouldn't change his treatment." Then he added that he didn't think it was a concern for Jules. We were like, WHAT??? And he said, "I don't think the kid has it."

"But," we said, "the odds are overwhelming that he has it!"

To which Brackman replied that they weren't exactly overwhelming. Statistically speaking, he had a good chance of having it. But he explained that the statistics come from his clinic. They are his patients. And Jules is an atypical presentation for this type of tumor and he doesn't think he has it. Either way, he doesn't need to be tested. Because a negative would be inconclusive and a positive would result in the exact same treatment he is already getting, which is regular MRI's to monitor tumor growth and look for new tumors. And as far as the rest of the kids undergoing expensive testing not covered by our insurance? Well, it turns out that they can't have it. If Jules has it, it is a spontaneous genetic development. So his kids could have it, but not his siblings. Again, Dr. Jack-ass-on didn't know this WHY? And the geneticist didn't know this WHY? And more importantly, why didn't they say they didn't know and send us to somebody who did?

Anyway, so that was all when Jules was 7. We were told to come back in 6 months for another MRI. Then we were told to come back in 9 months. Now we are going yearly. And there has been absolutely no measurable tumor growth, and no new tumors. No signs of neurofibromatosis type II. No brain surgery. Is it possible that Jules will never need brain surgery? Yes, Dr. Brackman says anything is possible. Jules (now age 11) is his youngest patient. He says he doesn't know what to expect. Atypical means you don't know what to expect. That is why we're waiting and watching. Going in and doing serious surgery that requires a long and stressful recuperation period, would have been an irresponsible knee-jerk reaction. And it was what the local doctors wanted to do. And remember, they didn't even know exactly where the tumor was. And the possible side effects of surgery resulting in nerve damage, facial paralysis, etc that we were warned about? Are way less likely to happen if the surgery takes place in LA - where the House Clinic doctors are used to removing this type of tumor and are not having to read the instructions like they were putting together IKEA furniture. Shouldn't somebody have said, "Hey, by the way, the people who write the instructions for this know, you could just get them to take it out. They might be better at it...."

Anyway - that was a long-winded rant, wasn't it? The moral of the story is:

Somewhere in the world there is always somebody who knows what he's talking about. Before you have your head cut open - you should find him. It can make all the difference. And of course, this applies to things other than brains. I am now a firm believer in second, third, fourth, and fifth opinions.

We had a good time in LA. Oh! And we had a small earthquake! We had been in our hotel room for about 20 minutes when it started wobbling like jell-o. It lasted about 3 seconds. Jules immediately called Joel to make him jealous. "Hey! Dude! We just had an earthquake!!" To which Dude replied to his brother with the brain tumor, "NO WAY! You get to have all the fun!"

So now we go for another year with the brain tumor thing on the back burner. I never thought I would be able to do this. I didn't think I could live my life in 1-year increments. Turns out I can.

I came home from LA sick. I have a cough, fever, and a sore throat. Swine flu? God I hope not. I do not want to be the person known in the news as the "one who got on a plane and spread swine flu all over the smucking place." (smucking, you say? yes, i say. i just finished a stephen king novel and now his word is stuck in my head.) Anyway, so I'm not feeling so well and you should all leave me comments to make me feel better and give me something to look forward to :).

I'm signing off as a Grateful and Relieved Sardine Mama to Jules - the middle fishie in my little school. The one with the tumor who can't hear out of his right ear, the one who has braces and glasses and Asperger's Syndrome...the one who keeps teaching me that I can do all kinds of things I thought I couldn't. The one who gives spontaneous little hugs throughout the day and holds up his index finger when he speaks...the one who likes to twirl outside under the pecan tree with a light saber in his hand...the one with the massive turtle collection....the massive key collection....the one who never questions the things that just keep coming his way....because a boy just simply has to do what a boy has to do...and he does it all beautifully. And speaking of making me feel good with comments? Leave me some at Social Skills, too. Funny post, there.

Wednesday, May 13, 2009

It's Official

Yep. It's official. Summer is here.

I know this because my kids smell like sunscreen and chlorine, I have a hankerin' for watermelon, and it is hovering around 100 degrees here every afternoon ALREADY thanks to the "natural warming trend" (as folks around here like to refer to the global warming caused by zillions of cars and flatulent cows and other scientific stuff.)

For Jasper, last summer was eons ago. It probably seems like a dream. Anyway, we ran into some technical difficulties with the swimsuit situation yesterday. He was confused as to what to do with his underwear. This picture was actually snapped just after he removed them. He had been wearing them OVER his swim trunks. I had not noticed because he had pulled his jeans on over the whole arrangement (because he is a spy - that is the reason he gave) and so when he began to strip at the pool, revealing the undies over the trunks, he was met with some snickering and belly-laughing of which he was not appreciative. He immediately pulled them off. Dang. I was not quick enough with the camera. I was just glad the local "Don't those people homeschool?" fan club was not at the pool (they were in school...suckers).

Anyway, summer is not really officially here according to the calendar. It is like a month away, or something. But I'm not going to get bogged down by minor details like that considering the fact that I could literally fry an egg on my sidewalk around 4:00 every afternoon. I guess for those of you who live in areas where the "natural warming trend" is showing itself through massive flooding and freak snowstorms, this is hard to relate to. And for those of you who live in areas where massive chunks of ice are falling into the ocean? Sorry. I admit to driving a really humongous gas-guzzler (I would change this if I could afford to, believe me) and to owning a herd of flatulent cows (because I live in Texas). Really. Truly. Sorry. But hey! I recycle! And I don't use any plastic bags. Well, actually I occasionally do but it is by mistake and I really really hate it when people catch me with my shameful plastic bags because I wrote a guest editorial for the local paper about just how awful the things are and so it is embarrassing when I am dragging 30 or 40 of them across the parking lot of the local supermarket while people think to themselves (and surely they do because the world revolves around me and what I'm doing) that I am a massive hypocrite.

Speaking of plastic bags, it has always irked me to have to put my veggie and fruit items inside the little thin, clear plastic bags even though all my other groceries were going into canvas. I try to not use them at all, but when putting a dozen or so apples into the cart, it is hard to avoid them. So I was extremely thrilled to discover that a solution has been right under my nose this entire time! My friend, Diane, over at Go Baby Go, sells these awesome little veggie bags! Yesterday I traded her some eggs for a couple of the large bags and one small size. They are very lightweight and thin. The checkers can actually see the labels through the bags. Yay! This almost makes up for the fact that another foot or two of the polar icecaps melt every time I start up the old 12-seater full-sized commercial vehicle known affectionately as my wretched van.
Check out Go Baby Go if you're in the market for other reusable products, especially in the baby department. I am proud to say that I turned Diane on to cloth diapering and baby-wearing and now she sells lots of different brands of cloth diapers and accessories and baby slings and wraps. My favorite baby carrier of all time would be the Moby Wrap.
OK, well, gotta run. I told the kids I'd take them to the pool today and I have at least a zillion things to do between now and then. Number 14 on the list goes something like this:
Swimsuits. Bleh.
A Summery Sardine Mama

Friday, May 1, 2009

No Bite - Just Attitude

There's been much excitement around here, lately. Spring has sprung, we had some rain, and there's all types of insanity with nature and stuff and this gets the little people all stirred up. As if I didn't already have enough excitement around here.

Yesterday morning I sent Jules out to feed the chickens. Now Jules is my low-key kid. I never thought I'd say that because he was born in a somewhat hysterical state and remained that way for about 8 years, but now that he's 11 he has calmed down. He has calmed down so much that sometimes I'm not sure he's breathing. His voice is already slightly lower and he has started the "mumble". Anyway, so I sent him out to feed the chickens and he came back in way too soon.

"Did you feed the chickens?"



"Mumble, mumble, mumble, mumble, RATTLESNAKE, mumble, mumble, mumble."

"There's a rattlesnake in the coop?"

"No. Mumble, mumble, mumble, LIGHT SWITCH, mumble."

I didn't quite know what to make of that. I pondered and puzzled and tried to make a sentence out of the two discernible words but I wasn't able to do it. I hated to try again, as speaking seemed to be excruciatingly painful and exhausting for Jules, who was sighing and trying to go back to bed; but I tried again, anyway.

"There's a rattlesnake on the light switch?" This seemed implausible.

"YES. Mumble, mumble, ATTACKED ME mumble, mumble, mumble."

Our store room, where we keep all the animal feed and things, has unfinished walls. So the light switch plates are these blue box-things...that are nestled against 2X4's....and I tried to picture a rattlesnake perched on top of one and as soon as the image settled in my mind I did what any good mother would do. I began searching for another kid to go out and substantiate the unlikely (but still possible) story. First choice (teenage boy) was taking a 3-hour shower. Second choice, teenage girl, was surly but willing.

She went out. She came back in and said, "Yep. It looks like a rattlesnake on the light switch."

Dang. Husband. Gone. OF COURSE.

"Did it rattle?"

"Huh?" said the teenager who had already lost interest in the whole thing.

"Did it RATTLE?"

" it didn't. It just sat there."

"Was it curled up and all angry and stuff?"

"No. Not really."

This was not sounding like a rattle snake. When I had a rattlesnake on my patio last year, it literally threw itself into the glass french door trying to kill me. To use Jules's words..."It attacked me." And I could hear it rattling from inside the house. If it had, indeed, been a rattlesnake on the blue box, it probably really would have tried to bite Jules when he tried to turn on the light. The snake would have known he was there the minute he opened the door and would have started rattling.

So, once I decided there was probably no danger I went out to take a look, myself. I'm not proud of this, mind you. Anyway, this is what I saw. No rattles.

Rattlesnakes are scary and serious business in these parts. Don't you like how I said, "in these parts"? I like it. Anyway, just a few miles over, we have friends who live in what we call The Sand Hills. And none of them have seen rattlers on their properties. They have copperheads. Copperheads are also pit vipers. And they bite. But they're not aggressive. You pretty much have to step on one or pick one up to get it to bite you. Some of our friends have also seen corral snakes, which are extremely deadly but very shy and not aggressive. We've never seen a copperhead or a corral snake on our farm. Just lots and lots of rattlesnakes. When my husband was a boy growing up on this farm, one of his jobs was to move irrigation pipes with his siblings every morning before school (and my kids whine about unloading the dishwasher). The pipes were extremely long and he said as they moved them they could hear the rattles echoing through the pipes from the snakes inside. We usually see one or two per summer and we never stop saying, "Watch out for snakes!" whenever a kid goes outside, which is once every two minutes. After awhile, I'm sure it ceases to be effective.

Yesterday Jasper walked into the house carrying a shovel full of dirt (I had just vacuumed - which proves how stupid I am) while screaming,"Look! Dirt worms! Dirt worms!" Indeed, his shovel full of dirt held several earthworms, which we played with for awhile and then stuck in our compost.

And this morning I awoke to the sounds of Camille screaming, "Look! Baby birds!" We have several families of swallows who summer with us every year. A lot of people consider these birds to be quite pesky, but we welcome them with open arms. They do poop on the porch, and that is annoying. But we adore watching the parents build the nests, lay eggs, feed the babies peeping out of the nests, and of course, FLYING LESSONS! We love flying lessons. The nests are all over the eaves of our porches and the little guys end up on our chairs, our pots, and US in their wobbly landing attempts. We ward off the cat. I almost said cats, as in plural, but one of our cats, Socks, has never even walked fast, much less caught a bird. Now Gatoman? The dude can catch a bird. Here's a picture of Socks doing his imitation of a bear skin rug.

We have a nail on our porch that holds a wind chime. And every year in late March a single swallow scout arrives and perches on that nail for about a week. Then he leaves, and later he returns with the whole brood.

And guess what's been eating my parsley? Caterpillars! Bleh. I called organic pest control (Camille, Jasper, and Jules) who gathered them and promptly stuck them in jars. And they fed them parsley that they picked from the garden. Sigh. Anyway, luckily they didn't have to feed them too long because they looked around here at the mess from within their glass jars and did what any sane caterpillar would do. They said, "Holy cow - what a mess!" And went into cocoons. So we're waiting.....

I could go on. Because I've only covered a small percentage of the goings-on of Mother Nature around here. But I won't. Because I am a Mother, too. And I'm a busy one. So let's just say we are grateful for the rain and all it has birthed. We literally went from a parched, dead place to a green place bursting with life - overnight. We are still about 13 inches behind in rain. It is unlikely we'll catch up. Our ponds are still mostly dry. And probably, in a month we'll be back to brown and crunchy. But for now? We'll enjoy the green, springlike atmosphere.

We've had none of the wildflowers we're famous for. Not one bluebonnet or Indian pink on our place. In years' past our fields have been so full of these that the sweet aroma wafting through my windows would give me a slight headache by the end of the day. But all of our prickly pear are blooming. We've been remiss in grubbing up prickly pear over the past couple (decade) of years. But currently they're providing us with our only splash of color. And we're grateful for their beauty. They are usually overshadowed and outdone by the wildflowers...hardly noticeable. But this year we're appreciating and enjoying them immensely. photo of the blooming cacti. Maybe next time.

Well, Obama just celebrated his 100th day in office. And this is my 100th post to Sardines in a Can. That's cool.

I'm going to go eat breakfast, now. Because yesterday? I ate nothing the entire day. I was on a 24-hour water-only fast. Curious as to why I would do such a crazy-a** thing? Click here.

A Famished Sardine Mama