neurotwitch

Monday, May 05, 2008

sunday in the garden

Sunday was beautiful—about 70°, clear with a nice breeze. Stanley mowed the lawn. I could smell the onion grass. Which I love: it makes me feel calm and like things are okay. I guess because I always associate it with working in the yard with Stanley and summer and feeling content with my life.

I planted some perennials in the shade garden and we trimmed the old grasses. Stanley put in a new rosebush and planted a new lilac bush (it’s small—it’ll take about five years to get big enough to get even one bloom, I think, but it’s a start). Ginger was goofy, doing the silly bunny dance she does when she’s really happy. The lilac bush we planted a couple of years ago is loaded with buds and there is a lot of amazing growth on shrubs we put in over the years. Daddy Cardinal swooped down at us when we got too close to the nest tucked into the wild rosebush and clematis drapped over an arch. We watched the finch feed her babies where they’re tucked safely in the bat house (we would prefer bats in the bat house but aren’t about to evict the finch family).

The wood hyacinths and violets are wildly in bloom, with the periwinkle and lily of the valley making a showing. The Japanese dogwood is spectacular this year—it began blooming about ten days ago. The American dogwood had scant bloom. All the trees except the mimosa and the catalpas have at least baby leaves—it seems like the butternut leaves grew an inch overnight. Oh, and there are lots of dandelions. I know they’re weeds, but I love them. All of the peonies have buds.

A bleeding heart I planted a couple of years ago finally showed up (click the images to enlarge them):

The violets are abundant this year:

Our lilac bush is only about 6.5 feet tall right now, but it’s going to have lots of bloom. They should be open and smelling like nirvana by next Sunday:

Here’s a shot of the dogwood among the other trees and wisteria—I took this from the back porch. It’s hard to see the dogwood flowers in this view—I will have to get another shot of them from an upstairs window to do them justice:

Very few tulips came up this year—I think the squirrels must’ve eaten most of them. Will try to plant some more this fall.

And here is my happy girl. She’s doing well on chemo—but has lost the whiskers over her eyes (eyebrows?) and some of the fur on her nose:

Stanley felt better with the lawn mowed—I kinda like the meadow look, but it bugs him. He also planted a rosebush and the new lilac bush:

I took this shot a few days ago and love it so I’m posting it. It’s been so cold and wet that I’ve needed to use the space heater in our office—even though it gulps electricity, there’s no point in wasting oil to heat the whole house all day, not at current rates. Anyway, the space heater is next to my chair, below the counter you see here. Twitch, heat-seeker by profession, is stretched out on this counter because it’s very warm—and his butt is directly above the heater. Makes it kind of hard for me to use my keyboard, which is located to the left (you can’t see it) and I can’t rest my elbow on the counter, but he looks so content I manage to work around him.

We even managed to get a tiny bit of work done this weekend. Never enough to catch up, but better than not doing any work. I’m not going to complain about having too much work—I’m glad that we do. It was a great weekend.

posted by lee on 05/05/08 at 01:02 AM
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Sunday, May 04, 2008

a great resource about ftd

The doctors’ report says this:

... PET scan ... that showed focal decreased metabolism in the left lateral midfrontal cortex as well as mild reduction in the premotor frontal lobe and possibly in the posterior parietal cortex of the left hemisphere. The posterior cingulate FDG metabolism was not significantly reduced. The frontal changes were conspicuous than the parietal changes.

Since I’m not up on my brain anatomy or what the various areas of the brain are responsible for (Stanley knows more about this than I—but grad school was so long ago!) what function, trying to decipher this report has been making my eyes cross.

But, I found an article that helps a lot. Actually, I asked a question about the side effects of Trazodone on the FTD Support Forum and one of the members posted a link to this article, which briefly mentions Trazodone at the bottom. The article is Frontotemporal Dementias: A Review in the Annals of General Psychiatry. It helps to tie the report to the symptoms. Not a cinch to translate, but much more useful than anything else I’ve seen so far.

posted by lee on 05/04/08 at 08:09 PM
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Wednesday, April 23, 2008

frontotemporal dementia resources (& ginger too)

Yesterday, I received the book ”What If It’s Not Alzheimer’s?: A Caregiver’s Guide to Dementia” and started reading it. It’s not a quick read, but from what I’ve read so far, it gives a careful, detailed presentation of what FTD is and is not, what happens in the brain, the different types and symptoms of the different types. I’m only a couple of chapters in (I just started the chapter on genetics) and I already understand things better. It’s not a pretty picture and it’s really distressing to read the details, but I much, much prefer to know the whole truth about everything than to bury my head in the sand and have hope not based in reality. I sent a copy of this book to Dad and he should get it in a few days.

Another resource is a private support group: FTD Support Forum. To join this, you register and post a message to the moderators to tell them why you have an interest in joining and within a pretty short period of time, they approve you (if your reason is legit). You will see me there as “wordsilk” if you join.

The Association for Frontotemporal Dementias has a lot of resources, though it’s a confusing site to navigate.

Though this information is for medical practitioners and not specific to just FTD, I found it very useful: Dementia: Update for the Practitioner. It’s not as dense as some medical articles I’ve tried to read.

Frontotemporal Dementia Caregiver Support Center is very useful. It’s a great place to start.

The Pick’s Disease Support Group is a British organization, but has lots of useful information. In particular, reading Pick’s from the inside out by Dr. Bob Fay really helpful—it’s his own story as an FTD patient.

Neurology Now, while covering a broad range of neurological problems, makes its articles available online. I think you can subscribe to a print edition of it for free.

What I still need to find out is what kind of resources are available in Michigan, such is there a way to get a referral to a social worker in my parents’ neck of the woods who can help them get what they need in terms of in-home or respite care or any other things available. That’s my next task, unless someone else in the family can find this information faster than I can.

GINGER
Last week, the onco vet told us that since her white blood cell count was down so much after each treatment, she was worried that the lymphoma had gotten into Ginger’s bone marrow or than Ginger had a genetic predisposition to drug resistance and would need to be tested for this if the WBC count was low again on Monday. Which really depressed me, worrying about this (on top of worrying about Mom and Dad and my brother). Fortunately, the WBC count was perfect on Monday. So the chemo is working and she’s officially in remission. She has one more weekly treatment next Monday, then every other week for six treatments, then it’s every three weeks until she’s discharged. I feel much better now. She gained three pounds, though, so now we have to cut back a bit on the food again. It won’t do her much good to be cancer-free but unable to waddle up the stairs!

And my brother got a diagnosis for a problem he is having that is not the fatal, incurable disease they thought he had, but one that is treatable—I am immensely relieved by that.

posted by lee on 04/23/08 at 12:14 PM
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Tuesday, April 08, 2008

on a hamster wheel

Several sites going, several reports due, one big project (over)due, bookkeeping to finish so the taxes can be done, billing to get out, files to be sent, logins to be tested. Another big project to start, a database filter to figure out and entry form to design. Spring cleaning barely started (but at least it’s started), seeds to start, yard to clean up if the weather gives us a break this weekend. Car needs to go in for a checkup (that damned “check engine” light is on ... ) Brunch with a friend, dinner with another friend, calls and email to family. Dog to be dosed daily and back to the oncologist on Monday (she’s still doing really well and the bill is up to more than $3K). Diet is going well (more than 20 pounds so far!), exercising needs to begin. Lots and lots of little tasks to take care of. Three books half read, two crossword puzzles nearly finished, ten rolls of film that need developing (at the photo developers less than a mile from here). Trip to U-Mass Amherst soon to take Kate out to dinner. If she has time for us. Watching the cat stare at something only cats can see. Taking care not to watch the news too much so I can avoid the rage at the damage and the stupidity. Relief that a loved one is not as sick as we thought he might be. Too much clutter—where to begin? Need more sleep; lately I’ve been falling asleep at my desk but very productive when I wake up (prompted by guilt at napping, maybe? Whatever works.) Right now, laundry to finish.

And daily I fight the cats for my fake suede and cat-furry office chair (click to enlarge):

We just have too much stuff—I have a strong urge to declutter, to pare things back to that the only things we keep are our books and artwork and collections of things that mean something to us. There are too many pieces of paper taking up space here. I don’t want minimalism in my home, I just want less stuff. After I file our taxes, I am going to get rid of paperwork that I really don’t need to keep “just in case” dating before 2005. Oh, and obsolete manuals for software that we stopped using two operating systems ago. And clothes I never wear.

It’s just starting that’s the hard part.

Sometimes I wish I could just turn the thinking, thinking, thinking off. I was halfway into this article: A Disease That Allowed Torrents of Creativity before I realized I was in this weird sort of denial that I was reading an article about frontotemporal dementia, the disease that is stealing my mother, slowly, but unremittingly. I read the words “frontotemporal dementia” and saw the abbreviation FTD and was annoyed because I didn’t know what they were talking about. But I did. It was so strange.

Several months after the definitive diagnosis, it is still so painful to me that my stomach clenches and my eyes tear up. Grief at the loss that is and loss to come. Rage at the asshole in the White House for hampering stem cell research. Worry about my father, who has to deal with this every single day. And having those times when I’m just pissed off at the universe. I still can’t watch reruns of “The King of Queens,” or anything with those actors, because my mother’s insistence on watching reruns of this show a couple of years ago was when I knew, without a doubt, that something was very wrong.

Okay, the hamster wheel has stopped long enough ... I don’t want to think about it any more today. So I’ll go hang my t-shirts to dry and then go to bed. Yeah, that’s the ticket ...

posted by lee on 04/08/08 at 11:54 PM
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Thursday, March 27, 2008

this week’s drug is cytoxan

Ginger is still doing well. Last week’s dose of vincristine—besides turning her doggie farts lethal—lowered her white blood cell count. Not below the cutoff for the next round, but enough so that her onco vet asked us if we wanted to postpone the next treatment for a few days. We opted to go ahead with the cytoxan and feed her antibiotics and keep a close eye on her rather than disrupt the schedule. Since I work at home, I am able to watch over her. And trip over her. She keeps very close to me most of the time.

Cytoxan was administered with a diuretic—Dr. Elpinar told us we had about 20 minutes from the time of treatment to get her home and get her outside to pee. Ginger, of course, kept her own schedule and we had to make her go out. She’s on an antibiotic, half a dose of prednisone, her K-9 Immunity stuff, Omega 3s, and I just added flax seed oil.

Oh, and she overdid it running with Tattoo last Saturday and had a terrible limp for a couple of days, so I added glucosamine chondroitin to the list. The vet told us we shouldn’t give her aspirin while she is on prednisone because it will upset her stomach and gave us a painkiller that is safe with it. Seems to do the trick quite nicely. She isn’t limping any more—she usually does get over it after a couple of days, but this time she hurt so much on Monday that Stanley had to carry her down the stairs. So Tuesday, since she was still limping, Stanley dosed her with the painkiller about a half an hour before I got up so she could go downstairs herself.

The thing that’s making me crazy about this is Ginger has lost five pounds in two weeks. The vet says it’s because it takes a lot out of her to fight the cancer—and I know she’s right, but 5% of her body weight in two weeks seems like a lot to me. She started out at 86.5 pounds and is down to 81.5 pounds. It’s weird to go from worrying about her weighing too much (she was eating Beneful Healthy Weight!) to worrying about whether she’s eating enough to fight her cancer. (If only she could eat lots of Greenies every day—I still haven’t figured out what so addicting to dogs about those things!)

Update on the costs so far: $2,000 (two trips for diagnosis to her vet, intake and three chemo treatments by the oncology vet, K-9 Immunity kits, prednisone, antibiotics, and pain medicine. Oh, and high-end puppy chow, high-protein wet dog food, bones with vitamins, and lots and lots of string cheese. Stop ‘n’ Shop string cheese works best, especially if you take it out of the fridge about 30 minutes before you need it.)

In other news, we had a really nice time over Easter. I was going to use the time to catch up on stuff, but I was just too tired and barely checked my email.

THE CONNECTICUT SCHOOL OF ETIQUETTE REDESIGN
And today we soft-launched the completely redesigned website for The Connecticut School of Etiquette: http://www.morethanmanners.com which I quite like so far. There are some glitches I need to work out and there is more content and photos and a bit of programming to add, but it’s a site the owner can pretty much update herself once she gets the hang of the interface and how it works. Done with ExpressionEngine, of course. The original design we put up quite a while ago—more than five years ago, I think—and while nice, it needed a redesign and needed to be easier to maintain because the owner’s business is expanding.

One of the things I need to do is make the black bar with the etiquette words at the very top of the screen work cross-browser. Looks fine in IE6 or 7, but has this annoying one- or two-pixel border at the top that shows the background pattern through in Firefox and Safari. Not sure yet how to handle this. Border and margin for the body are set to zero, so that shouldn’t even be there—I’ll check various CSS guru sites to see if there’s something I’m not doing that I should be. Every time I think I’ve gotten a handle on CSS, something new that doesn’t work right comes up and I realize I have miles to go—especially since I don’t want to use any hacks.

Friday I’ll be finishing putting together a database in Access. Among several other things. Work is not dull, that’s for sure.

posted by lee on 03/27/08 at 11:59 PM
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Sunday, March 16, 2008

john adams on hbo

We watched John Adams, parts 1 and 2, this evening. I was really looking forward to it and I wasn’t disappointed.

The things that I noticed right away were the details of the house interior and the streets of Boston—the cloth over the entry door to keep out the winter drafts, the grubbiness of the Boston streets. I love it when movie makers pay attention to details such as this—it bodes well for the history part of it.

Since I haven’t yet read John Adams by David McCullough, though it’s on my list, I never knew that Adams defended the British soldiers accused of murder for the Boston Massacre. In fact, I never realized that the whole incident was provoked. I’m looking forward to the entire series.

It was also interesting to see what tarring and feathering really involved—it’s pretty barbaric. I never really thought much about it before. And the trial was interesting—what a difference from how trials are conducted now. I’m not sure if it’s an improvement. Stanley made a comment about people in this country not taking too well to occupiers.

I’m not crazy about David Morse portraying George Washington—first off, he sounds like he’s got too much cotton stuffed in his cheeks, like he can’t handle the make-up. Second, I’ve never been crazy about David Morse, period, plays everything a lot on the too morose side. But Paul Giamatti and Laura Linney are really good in their roles so far. And Tom Wilkinson as Benjamin Franklin is great.

In the morning, Ginger gets her second chemo treatment. Not sure what drug this time. She’s doing really well so far, lumps are no longer noticeable and she has loads of energy—spent part of the evening rolling Twitch on his back and trying to get him to play with her. Twitch was one mad kitty. Not sure if this way expensive K-9 Immunity supplement is helping any (beta glucan therapy, whatever that is—near as I can tell it comes from mushrooms) or if it’s a lot of hooey, but she’s doing so well so far I don’t want to change anything just yet.

posted by lee on 03/16/08 at 11:25 PM
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Friday, March 14, 2008

found out the cell type

And it’s B cell. Which is the less virulent form of lymphoma. Which means the prognosis is better—the vet told Stanley that this type usually responds well to chemo. Ginger seems full of piss and vinegar today, and her lymph glands seem back to their normal size.

Just a quickie update!

posted by lee on 03/14/08 at 02:59 AM
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Tuesday, March 11, 2008

she started chemotherapy

We went to see the vet oncologist yesterday—Ginger’s doctor is Amanda Elpiner. Ginger seems to like her, though not as much as she likes Dr. Re. Dr. Elpiner filled us in on what lymphoma is, treatment options, costs, things like that.

She said at this point, they stage the cancer, which is determining what organs are affected and whether or not she’s acting sick. Staging is taking bone marrow (while Ginger is under anesthesia), doing an ultrasound, and determining which type of lymphoma Ginger has: b-cell or t-cell. T-cell is the more virulent form. Complete staging costs $800, and other than determining which type of cancer cell Ginger has, does not determine treatment. The initial drug, Elspar, is what would be given for either b-cell or t-cell. We already knew we wanted to most aggressive treatment option.

While on one level I would like to know all of the staging details, thinking about Ginger, what I really want is for her not to be prodded and poked and stuck with needles and put under anesthesia any more than is necessary for treatment. Stanley and I decided to forgo the staging and spend the money on treatment.

Treatment is not cheap. It’s going to cost us at a minimum $6,000—could even be up to $10,000 depending on how long she needs treatment. It’s once a week for six treatments, every other week for six treatments, then every third week for the rest of the year. Or something like that. That’s for the treatment—food and supplements will add to the bill, though we’ve always opted for higher premium foods so the food bill won’t be that much higher. I guess we won’t be taking any luxury vacations or cruises any time soon. Treatment, if it’s b-cell and all goes well, can get her anywhere from one to three years of remission, 10% to 30% of her expected lifespan. We’ll know the cell type by Wednesday or Thursday.

So, Ginger has been on K-9 Immunity for three days, got her chemo drug yesterday, and was put on prednisone for a month (descending dosages, to taper her off), to get the swelling of the lymph nodes down. Her lymph nodes have already gone down quite a lot—I was shocked at how much and how fast. Pleased too.

Ginger, of course, turned into dead weight when she was supposed to go into the back room for her treatment. Stanley and I had to drag her back there while they did the cell test and gave her the first injection. She shied away from Dr. Elpiner when the doc tried to examine her—like she does with Dr. Re. But, after her treatment, the door opened and she came running over to us, in pretty good spirits. She then went into Dr. Post’s office to see who that guy was, and she liked him, wagging her tail like crazy. Then went back into Dr. Elpiner’s room to say goodbye to her, tail wagging. Trotting around the place like she’s an old pro already. I hope it’s not a battle to get her in next week—there will be times when I have to take her by myself and there’s no way I can lift her. So hopefully she’ll remember the nice people who petted her afterwards rather than the before stuff.

Today, she’s been sleeping a lot. She was really mean to Slink last night, so we’ll have to watch for prednisone-induced personality changes. She seems tired rather than sick, though her nose is warm and dry. And the prednisone makes her drink a lot, which makes her have to pee a lot and when she’s gotta go, she’s GOT TO go. Clients will, I hope, understand when I suddenly have to put them on hold to let her out.

Oh, and I discovered the best way to give her pills is to stick them in the middle of pieces of string cheese. I put the fish oil in a small can of wet dog food—those are too big for the cheese. And I have to keep remembering that she’s right under my chair—she’s taken to curling up as close to my ankles as she can get. (Here is a photo Stanley took of Ginger curled around my chair. Click to enlarge.)

Jeopardy is starting—I should go see if Stanley is awake—he had a new post installed for his new replacement crown and came home from the dentist with a bad headache, so I told him to just go lie down. Which he did—he rarely corks out during the day, only when he really doesn’t feel well.

posted by lee on 03/11/08 at 05:20 PM
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Saturday, March 08, 2008

another journey i didn’t ever want to make

Right now, I’m kind of numb. On Thursday, Dr. Re, Ginger’s vet, called. Ginger has lymphoma:

The lymph system is the body’s “other” circulatory system, circulating white blood cells and most importantly, lymphocytes. These are specialized cells involved in immune function found throughout the body. In normal healthy dogs, these cells are manufactured in the bone marrow, go through a life span of around 30 days, and then die off and are re-absorbed into the body or eliminated through the waste channels. In Lymphoma, the regulation of production is lost and these cells proliferate in large number, or they lose their programed life cycle and continue to live on, overwhelming the other blood cells. High white blood cell count and swollen lymph glands are the characteristic signs of this disease, followed by lethargy, loss of appetite and leading eventually to death unless treated.

When we found Ginger at the Westport Connecticut Humane Society in October 2001, they said she is a Golden Retriever, but had no papers. Whether she’s a purebred or not doesn’t really matter to us—we chose the dog, not the background. But we’ve discovered that goldies face some problems that most other breeds and mutts don’t, and one of them is a 1 in 8 chance of developing lymphoma. As I said to Stanley, that’s why, when we brought her to Dr. Re last week, she just knew what was wrong. We could see it in her face.

We saw Dr. Re Friday at noon, Ginger in tow. She briefly laid out our options, ranging from making her comfortable until she dies to treating it aggressively and seeing if we could get her into remission. Without treatment, she’ll die in a couple of months. With treatment, we can give her a year to two years of life—a good quality of life.

Ginger appears to be a good candidate for aggressive treatment since she’s not yet sick from the cancer. We caught it very, very early—she didn’t have the lumps, or if she did they weren’t noticeable, when Stanley bathed her on February 23 (before heading to Natick to watch the Oscars). The only way she wouldn’t be is if she has, I think, the T-cell form instead of the B-cell form, as the T-cell form is particularly virulent and does not respond to chemotherapy.

Mostly, we don’t want Ginger to be in pain. There would be no point to prolonging her life if she is going to be miserable. But from everything we’ve read, from what the vet said, most dogs respond very well to chemotherapy and have an excellent quality of life. She’s a good dog and we love her, so of course we want to keep her alive as long as possible. She makes our lives fuller and I, for one, couldn’t have gotten through Stanley’s surgeries and other problems without her. She kept me sane. We owe her life for all she’s given us. Yes, it’s going to be expensive—thousands of dollars, from what we’ve been able to discover. We can’t really afford it, but what else can we do? So we’re going ahead with treating her—if we can give her at least one more summer on the beach in Oscoda, it will be worth it for all she’s given us.

We have an appointment at 10 a.m. Monday with the oncology vet, at the Veterinary Oncology & Hematology Center here in Norwalk. It is headed by Dr. Gerald Post, whom Dr. Re praises highly. There Ginger’s cancer will be staged and they will outline treatment options and we’ll get started. I already know I will have to document this whole journey in order to get through it—writing it all out here helped me get through Stanley’s operations and his near-death brushes.

Also, I read a lot about diet and immunotherapy (I’ve read a lot already—bless the Internets ... ). Ginger needs a high-protein, high-fat diet, low in carbs since carbs, apparently, feed the cancer. We got some IAMs puppy chow for her, as that is one of the brands recommended on http://www.dogcancer.net—it’s first ingredient is chicken vs. a grain or corn. We also purchased a month’s worth of K-9 Immunity (painfully expensive)—the one-month kit. It came this morning.

Giving her the pills is fairly easy—I just poked them in the middle of a piece of string cheese and Ginger gobbled them down. I have to give her nine of these per day. The fish oil capsules were a problem—she ate the cheese and spit out the capsules. Stanley said to put them in her wet dog food—that worked just fine. The immune factor tablet is supposed to taste like liver—after hesitating, she finally chomped it down. I gave her half this morning and will do the other half this evening—but the instructions say they can all be done at once so that’s what I’ll do starting tomorrow. A new daily ritual. If it helps, it’s worth it. I will ask her vet about it on Monday—they also offer immunotherapy as one of the treatments so they’ll know more about it. I want to try everything that works—I’m shooting for a two-year remission at least. Why not? She’s only seven years old and other than the cancer, very healthy.

I’m going to put a donation button up—if readers want to contribute to her treatment, I welcome the donations. In exchange I promise to faithfully document everything, including costs, so that others facing this will know what to expect, what works for us, what doesn’t, pitfalls and victories, everything. I don’t expect any donations, but they sure would help. We’ll find out more on Monday how much this is going to cost us—the estimate, anyway. So my ten-year, get-out-of-debt-including-the-mortgage-plan takes eleven years—Ginger is worth it.

posted by lee on 03/08/08 at 04:27 PM
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Wednesday, March 05, 2008

waiting for a diagnosis

About a week ago, I was scratching Ginger’s ears and neck and I felt some lumps in her throat. Her lymph nodes, I’ve since learned. I figured she had an infection or something. I didn’t really notice them for a few more days, so it slipped my mind. Then I noticed them again—they didn’t seem to be getting any smaller. I asked Stanley what he thought, and he agreed that they were enlarged.

Ginger, in Natick, Christmas 2007

Since one of Ginger’s teeth is cracked, we just assumed it got infected, or maybe something from a tick. We took her to see her vet, Dr. Re at Strawberry Hill Animal Hospital, yesterday. Dr. Re found more enlarged lymph nodes in her legs and mammary area, and said there were several possibilities, including lymphoma, a kind of cancer that Goldies are particularly prone to. So Dr. Re aspirated the lumps to send samples out for testing.

We were supposed to hear today, but had gone out to dinner with our friend George by the time Dr. Re had a chance to call. Her message just said she’d call in the morning to talk about what to do—since she didn’t say, “It’s not cancer,” we assume that’s what the diagnosis is. I’m still hoping we’re wrong.

So if it is cancer, lymphoma, it is treatable, according to articles we read on vet sites on the Internet. Something like 85% go into remission for about a year after chemotherapy, which, the articles all say, dogs seem to handle well.

Waiting sucks. It’s going to suck even worse if we’re right about the diagnosis. She just turned seven years old. I can’t stand this.

posted by lee on 03/05/08 at 11:42 PM
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