Quick Counts

January 31, 2008

After sluggish counts at the beginning of the month, I am proud to report Erin's CBC registered in the normal reference range on everything when we had counts done today.

WBC  4.5 K/uL
ANC  2.9
HGB  11.8 g/dL
PLT  312 K/uL

With everything nasty that's going around Erin's school and (seemingly) everywhere else she goes, I am relieved to see that she can mount a response to any infections or viruses she encounters. For you locals, Erin was the Smile of the Day in The Eagle this morning. With all the thunderstorms that passed through it was nice to have something to brighten the breakfast table.

Legos and Ice Skates

January 28, 2008

Erin, Colby, Courtney (three extremely cute kids!), and a large number of really generous folks plan to get together at the Arctic Wolf Ice Rink this evening to kick off the founding of a local chapter of Candlelighters. Candlelighters, if you don't already know, "provides hope, support, education, and advocacy to every member of any family whose child has been diagnosed with cancer."

Even though more children than you can possibly imagine are diagnosed with cancer in our area, we don't yet have the facilities to treat them in town. Most travel to Houston, Temple, Austin, or much farther for their entire treatment plan and follow-up schedule. Those of you who know us, realize how much time we have spent in Houston (or on the road getting there and getting back) over the last five and a half years. Candlelighters attempts to make that necessity more palatable through tangible support for families during and after treatment. Please read more about them at their website, http://www.brazosvalleycandlelighters.org/. The founder, Melanie Chandler, knows first hand that childhood cancer changes everything. Her daughter, Lindsey (a twelve year survivor of childhood leukemia and the inspiration for her mom's effort to start this organization here in the Brazos Valley), can't attend One Cool Event tonight. This young college student has spent the last week battling pneumonia and whooping cough. Did I say whooping cough? Yep. Her transplant treatment took away the effectiveness of her immunizations, making her susceptible for the remainder of her life to diseases that most of us think went away when our grandparents passed. Most of us live gladly with such negative long-term effects, as the price we pay for successfully eradicating cancer from our children's body. Sigh.

Anyway, Erin is one of the guests this evening, and I think in addition to the Atkinson Scion zamboni ballet, a demonstration by some of the finest young skaters in the area, and some other yet-to-be-revealed attractions, Erin is going to captain a chair ice hockey team. In the meantime, I'm trying to figure out what in my shabby, very Southern wardrobe, I can wear to a black-tie/cocktail formal gala at an ice rink (where, incidentally, I have shivered in my polar tech and stadium coat every other time I have visited). Another sigh.

Yesterday, I thought Erin might be another no-show at the event. She bounced up for breakfast after a good night sleep and promptly fell back asleep on the sofa after she finished her French toast. I tried to rally her, since the children's choir was scheduled to sing at worship, but she had a drippy nose, croaky throat, and not enough oomph to get dressed. Walter and I left her with my mom. She seemed to feel better by the time we returned, but I've learned about enforcing downtime when she gets a little under the weather. I insisted on a pajama day and quiet play. No company.

She had me pull out all twelve drawers of Legos and the box with the Lego instruction booklets. Many of you know that the only gift Davis requested for birthday, Christmas, or any special occasion for about a decade was Legos. After he put together a set, following the instruction guide, he would store the new ones with all the old ones in drawers, organized by color and function. So all the wheels and axles from all the sets went in one drawer, all the Lego people parts and accessories, in another, hinged pieces in another (you get the idea). Plain pieces (the only ones they made when I was a kid) had their own drawers, too: black, white, red, and so on for the rest of the colors.

What did Erin have in mind? She is unsorting all of Davis's sets. She pulls out a set of instructions, finds and assembles all the required pieces, and then puts the item along with the instructions in a slider bag so that pieces from one set don't have to intermingle with pieces from disparate sets. It kept her busy for hours yesterday, and if she sticks with the plan may keep her busy until she leaves for college. I finally made her slip on some shoes and take a stroll around the lake to check our blue bird nesting boxes (sadly not much blue bird action. . . yet).

Say it again, with feeling: "Vickie and Walter, you have such interesting children."

I'd like to end this entry by referring you to Alex Podeszwa's website. Alex traveled from the Dallas area to Texas Children's Hospital last year to take part in an experimental treatment, as part of an effort to scrub up his thus-far recalcitrant neuroblastoma. In addition to doing a bang up job caring for Alex, Sophie, and Charlotte, Ann and David have taken a very active advocacy role in trying to secure passage of the Conquer Childhood Cancer Act. They have recently returned from a lobbying trip to D.C. and have posted a very informative Q and A about the whole pediatric cancer funding issue. If you need fodder for your next letter (nudge, nudge, hint, hint) you should check out their link.

AWOL

January 24, 2008

I didn't mean to leave you hanging last week, but for several days my unpaid job (number two assistant to Davis Buenger, college student extraordinaire) has superseded my other unpaid job of blog captain for Erin Buenger. Davis not only found himself making sit down dinner for sixteen last weekend (remember, he lives in a dorm), but he also found himself hip-deep in applications for summer research internships. I swear on a big stack of whatever you want me to swear on, that I did not fill out applications for him (I hold a grudge against helicopter parents who can't seem to cut the apron strings and let their college students fend for themselves), but there were some parts of the process he asked my advice on and some other ways I could help without violating my own code of honor. I admit, I had an ulterior motive. I really would like him to spend two months of next summer living elsewhere, having experiences he has never had.

Erin didn't seem to notice that she wasn't front and center in my daily routine. Ayesha came over from Round Rock for the long weekend. They did the usual stuff, which means I am only vaguely aware of how they spent their time. They did play makeover one afternoon, with strict instructions that they needed to wash their supermodel make up off if they left the house. They did two versions.

The very made up version:


And the very, very made up versions:


Frankly, I couldn't tell the difference.

We did have them scrub up before we went out for Walter's birthday Saturday evening.


As relaxed as the weekend was, we picked up the pace on Tuesday. Erin competed in the local piano teachers guild theory test/competition. We won't know how she did until next week, but it was a great way to kill a couple of hours on a nasty weather day. Yesterday, she helped Jackson celebrate his eleventh birthday with an after school party, followed by bells and choir practice. Tonight its back to soccer (in preparation for three tournaments over the next four weekends).

In some ways, Erin is growing so much, it's hard to keep track. At breakfast one recent morning, after discussing the causes of the War of 1812 (a topic I recalled very little about, though I did --apparently erroneously, thanks to the anonymous commenter who helped me on my history lesson. Shhh don't tell Walter, and don't remind me that I have two degrees in history--remember that it was the inspiration for the fine piece "The Overture of 1812"), she turned to Walter and said, "Now tell me dad, how come generals always get all the credit for winning a war, when really their soldiers do the fighting and it's probably their assistants that make the battle plans." To which Walter said, "I think you should ask your social studies teacher that question."

She is also working on a letter to Senator Kay Bailey Hutchinson. I asked her teacher to do this with her as a school project because I wanted it to be her words and not mine. I sent some cancer facts to the teacher along with a link to the curesearch website, so Erin could arm herself for a persuasive paper. After the first day that she worked on it, we were riding home together in the car. Erin asked me, from the back seat, "Is it true that every sixteen hours a child with neuroblastoma dies?" I told her not literally, but on average it was true, that enough children died each year from neuroblastoma that it was like one dying every sixteen hours. She was uncharacteristically quiet. I ask her if that scared her. She said "No, but it sure is hard to understand why my Senator won't sign the bill to save some of those kids' lives. Why is she so stubborn?"

I have to say it's hard for me to understand, too.

Anyway, that's it for now. I'll publish Erin's letter here when she's done. Maybe you'll take the time to write your Senator or Representative today. The Senate bill will come to a vote before too long, and its gaining momentum in the House (up to 194 co-sponsors!).

Three Bits of Good News

January 17, 2008

First bit: I feel well enough to post. I didn't mention last Sunday, but Walter spent last week battling a flu/upper respiratory jobber that kept him from feeling his best for the good part of a week. He graciously shared. So, I have mostly stayed home with my junky cough and my less-than-energetic, feverish body this week, making an art of elbow bumping so that I could keep my germy hands to myself. If feeling better weren't enough, I am pleased to announce that Erin has lived at Germ Central for ten days and has not yet succumbed like the older and weaker spirited adults she lives with. Can you say IVIG?

Second bit: Yesterday, out of the blue, Erin received a gift card in the mail to Toys R Us. We need to thank you. Accompanying the card was the explanation that in 2007 you had hung 575 ornaments on Erin's Giving Tree at Lunch for Life, which earned her the special treat of a sponsored trip to the toy store. All of that donated money goes to neuroblastoma research, and it was a privilege to present her with that card (although for the life of me I can't imagine a single thing available at Toys R Us that we do not already own and have in our own home. Erin assures me she can find something.). For any of you keeping track, Lunch for Life raised over a quarter of a million dollars for neuroblastoma research this year by asking people to give up their lunches.

Third bit: State team leaders from CureSearch just returned from a trip to Washington D.C. to push some more on the Conquer Childhood Cancer Act. In two days worth of visits they convinced nine more Representatives to sign on as co-sponsors of the bills, bringing the total to 185 (remember we would need 218 for a positive vote). This is by far the closest we have ever come to the bill even getting out of committee. Hopefully, when Congress re-convenes this bill will pop up on the agenda.

Snap, Crackle, Pop

January 13, 2008

I have something today that very few Americans have. I'm actually willing to make a small wager that none of our "regulars" have what I have: a sparkling clean floor under both my range and my refrigerator, accompanied by pristine walls surrounding them. I have not just moved into a new house.

Yesterday, as we took a leisurely start to the day, pre-heating the oven for sticky buns, sipping coffee, and thumbing through the paper, we heard a snap, some crackling, and a pop. I was not serving Rice Crispies.

The heating element in our range had broken (after years of use), causing a smallish fire as the electricity arced across the break trying to complete the circuit. I've seen this happen before, so I didn't panic. Unfortunately, the range of my experience didn't guide me in what happened next. Apparently, the arcing got so hot that the element didn't immediately burn itself out. Instead, if you imagine an incense stick (only 1000 times brighter and about 3/8 of an inch thick. Actually, I think you'd have a more accurate image if you pictured someone welding), the fire followed the path of the element along the bottom of my oven. I turned the oven off. It didn't waver. Walter and I considered what would happen if it made it all the way around to where the element entered the oven: would it just fizzle out or would there be some grander (and less palatable) end. Walter grabbed the box of baking soda (which I handily keep right by the stove), and dumped the contents on the fire. It burned as bright, if slightly more colorfully. I grabbed the fire extinguisher and quickly scanned the label to learn if fire extinguishers worked on electrical fire. Luckily, it had pictorial directions, showing an electrical outlet with tongues of flame and the word OK next to it. I pulled the pin and pumped the contents into the oven. The fire didn't falter. Walter grabbed the fire extinguisher and gave it a more manly quantity. No effect. We closed the oven door again and wondered what would happen next.

For the record, despite all of our grace under pressure, we did not think to un-plug the range or run outside and flip the breaker off.

We waited as the nova-like end of the element ate its own body up. Then, it made another tiny snap, crackle, or pop and snuffed itself out.

Have you ever used a fire extinguisher? They have a variety of contents: the main one ours had was monoammonium phosphate. That's an ingredient in a lot of fertilizers. It's not particularly toxic, but you neither want to eat nor breathe in a lot of it. You really don't want it lying in piles around your kitchen, with a noticeable dusting on your forks and spoons, cookware, and coffee pot. Had the fire extinguisher actually contributed to saving our lives, our kitchen, our range. . .Had the cloud of yellowish haze done anything at all. Perhaps then, we wouldn't have felt so burdened by the massive clean up job facing us as the inside of the oven darkened to its usual cave-like appearance.

Nevertheless, nine hours later, every bit of the yellow dust that clung to the floor and the walls, the inside and outside of the range, nearby cabinets, drawers and all their contents, was gone. All day, I felt like the children in The Cat in the Hat, who tried to get the last of the pink stuff out of the house before mother returned, only to find more of it at each turn. Without the aid of little cat Vroom, we finally ran the dish washer one last time, took the mess of rags and towels to the washer, and left for dinner out.

I have to say, that I try very hard to look at the bright side, and most times its easy. So give me a chance to brag on my clean kitchen. It's small solace, given the myriad of other ways I had considered spending my rare, free Saturday.

Also, Ellen, forgive me for making you all hang fire waiting for the photos from The Trip. With A&M starting classes tomorrow, I had put off updating about Erin's grand time until I had my courses sorted out and set up. Yesterday was going to be the big day. Ooops.

You may remember that Erin had a New Years getaway to Fort Worth on the 2nd through the 5th. I didn't get too many details, because apparently the Benson's hit the road running much like the Buengers do, and don't slow down for much. I think they fit in basketball, swimming, pizza, skating, fairy play, and a museum trip, not necessarily in that order. Here are Erin and Clayton Sue. Their expression says it all. . .something like "will work for fun!"


You non-Texans may not understand what I'm about the explain. In fact, it took Erin twice (or maybe thrice) to splain it to me. One day they went to the Natural Science Cowgirl Museum. Doesn't that just scream Fort Worth? I think the Fort Worth Museum of Science and History is temporarily housing the Cowgirl Museum while it's under construction, but I can't think of a better combo to share digs if you want to encourage young women to think outside the box. Here they are (dare I say this, given the disaster at Buengerville yesterday) building a circuit.


At least Erin understands some of the benefits of actually completing the circuit:

It wasn't all brain food for these girls:

A Few

January 10, 2008

My grandmother used to tell this joke:

A farmer asked his mule if he wanted some oats. The mule said a feeeeeew. Not funny at all, unless you're eight, and it's your grandmother, and she draws out the "few" to make it sound like a mule passing gas.

[Aside, for context: my grandmother on my mother's side was a character, long on flair, an able weaver of tales. She like to "keep the conversational ball rolling," which translated nicely means she could converse ably with a post. This being the South, you would recognize her by other women you may know from books, movies, or television: Aurora from Terms of Endearment, maybe Blanche Deveroux from Designing Women.]

Anyway, I was reminded of the joke during an e-mail exchange with Erin's oncologist, Dr. Heidi Russell earlier this week, when she wrote to comment on how nice Erin's images were on Monday (including the bone scan, for any of you who did not trust my amateur opinion in my post on Monday evening). She also noted that Erin's ANC had been lower than usual and wondered if Erin had been sick. Another possibility she suggested was transient neutropenia triggered by antibodies in Erin's IVIG. In either case, Dr. Russell, went on to say, "I wouldn't mind, though, if you had it re-checked in a few weeks, just to be sure it is resolving."

Since we ordinarily have blood draws once a month (and since I take the care and maintenance of Erin seriously, I tend to follow doctor's instructions rather literally--friends may remember when I thought that Dr. Russell's instructions to give Erin her medicine every day at the same time meant every day at 6:00 a.m., plus or minus two minutes. She gently corrected me--after a few months--that the same time every day meant plus or minus two hours), I wondered what "a few weeks" meant. I sent her a return message asking for clarification. This is what she wrote back:

I have attached the formal definitions of "few" below.  I usually like the
Merriam Webster Dictionary over the Random House, but alas, this came up first on
google.

few   Pronunciation[fyoo] Pronunciation Key - Show IPA Pronunciation adjective, -er,
-est, noun, pronoun
-adjective

1.
not many but more than one: Few artists live luxuriously.
-noun

2.
(used with a plural verb) a small number or amount: Send me a few.


3.
the few, a special, limited number; the minority: That music appeals to the few.
-pronoun

4.
(used with a plural verb) a small number of persons or things: A dozen people
volunteered, but few have shown up.
-Idioms

5.
few and far between, at widely separated intervals; infrequent: In Nevada the towns
are few and far between.


6.
quite a few, a fairly large number; many: There were quite a few interesting things
to do.
_____

[Origin: bef. 900; ME fewe, OE féawe; c. Goth fawai; akin to L paucus few, paulus
little, pauper poor, Gk paûros little, few]


Dictionary.com Unabridged (v 1.1)
Based on the Random House Unabridged Dictionary, © Random House, Inc. 2006.

She went on to write:

The HVR definition for clarification is 3 to 4 weeks (or 20 to 30 days if
you'd rather)

For some reason this just cracked me up. I really think you have to appreciate someone who did not have their sense of humor excised in medical school. Some pediatrics specialist fake a sense of humor by tickling children so that they can palpate them or pretend to see Big Bird or Sponge Bob in their ears when they are using their otoscope. But you don't always find someone willing to be cheeky. So, to her long list of accomplishments, I would like to give Dr. Heidi V. Russell some additional props for making me chuckle (of course we all know that's a lot easier to do the week after stable scans than the week before).

So, in 20 to 30 days from last Monday, Erin will run by the local clinic and have her oil checked. Doctor's and lexicographer's orders.

Home and Stable

January 7, 2008

I want to collapse in bed, but not before letting you know that Erin's CT scan came back stable. Her counts were fine, and I'm not expecting any bad news from the bone scan results, which I will probably get back tomorrow.

Happy or Sad?

January 5, 2008

I easily fall into the trap of putting myself at the end of the queue, behind those I love: Walter, Erin, and Davis, my mom who lives next door, my students, my friends, my intrepid, but demanding pups, even my meager set of home page fans. I'm not complaining. I'm a pretty low maintenance chick. I take my responsibilities as a mother, wife, friend, and professor seriously. Having a full day (mostly) in the service of others is not a bad thing, all else considered.

So, what happens when Walter jets off to an academic conference in DC and Erin's buddy Clayton Sue snatches her away to Fort Worth for four days? Sure, Davis is still here, but our schedules don't mesh all that well (he stays up a tad later than me--three or four hour--and sleeps away a good portion of my waking hours). My mom is next door, of course, but she has her own schedule and only needs me to lift heavy things occasionally. School isn't in session; my friends are traveling. I have time on my hands.

What happens then? Woohoo! I can watch a t.v. show without considering whether it has adult themes. I have first choice on where to sit and what to eat (for instance I don't have to set a good example by eating all of my oatmeal). I can actually finish something I start, instead of putting it on hold to start supper or move the laundry along. I can wait until it's light out to walk Willie. If this state of the world went on very long, I could keep my house as neat as a pin, have all the family photos labeled and in albums, and the gardens denuded of weeds.

But I don't get completely caught up in this happy fantasy. I know that Erin has plans for overnight camp this summer, so I'll have a few days to do a re-enactment. But I'm not ready for her permanent departure, and that is the problem when you raise a child with cancer. The notion that Erin could be gone forever always colors my time alone. I love the sanctuary of my home and having it to myself from time to time, but I can't appreciate it entirely. It feels too selfish and perhaps too much like a reality I don't want to explore.

Somehow it's different with Walter and even Davis. I know that the world can change on a dime. Something tragic could happen to either one of them, unexpected and unwanted, that would rob me of them without warning. Still, when they are away, I don't look at their empty chairs, walk through their empty rooms, straighten their left behind gear, and wonder what it would be like to lose them. I have confidence (perhaps misplaced) that I will always have them. With Erin, I look and see a question mark.

For the record, I hope one day Erin will head out for college, leaving me (and Walter) to rattle around the house, with no cause to complain about her clutter or that her science experiments take up all the space on the bathroom vanity. But we don't want that to happen before August 2015.

So, this morning, I could be happy or sad. Happy that I can call the shots on how I will spend my morning without having to consider anyone else's wants, desires, or feelings. I don't have to cart Erin to yet another activity, time breakfast to fit everyone's schedules, or put my to do list at the bottom of the page. Yet I also have to look into Erin's currently tidy room and consider the ramifications of it staying tidy. . .and how, if she were gone for good, I would wish for mess, mess, and more mess.

I never linger on sad for long (at least sad brought on by my imagination). I will put my wistfulness behind me and enjoy my last few hours of freedom before it's back to my purpose in life, featuring the mom-role, the wife-role, the professor-role, the friend-role, the daughter-role, the constant-and-vigilant-guardian-of-the-world-from-the-destruction-wreaked-by-Willie role (oh, I forgot, I was never off the clock on that one). Here's a reminder of two of my great purposes in life, loving Erin and petting Willie (for the record, I'm not required to dress like either one of them, but occasionally I do, voluntarily):

Un-Able to be Corriged

January 1, 2008

That's Willie: the dog unable to be corriged. I know all dogs do naughty things, but I was hoping for a better start to the new year than having Willie attempt to pull the ten pound pork loin onto the floor for a gnosh, while we entertained the new minister and his family in the living room. All I heard was his nails scrabbling on the formica (am I the only person in America that still has formica counter tops?), but I knew that scrabbling nails were just a precursor to incorrigible behavior. I was not wrong. When I punished Willie by putting him up in my bedroom (risking gnawing or worse among my personal possessions), the tender-hearted, dog-loving pastor plead his case (even though he knew not the exact nature of Willie's transgression). I told him that letting Willie lounge around on my bed and rest his chin on my down pillows wasn't exactly like sending him to Gitmo.

Disaster averted. Dinner saved. But hope for the new year dashed. Oh well, I wouldn't want to waste all my positive energy on getting my dog to behave when we have scans coming up.