Vacation from Vacation

July 22, 2007

I can't tell you exactly what we have done this week, but we deserve a vacation. Okay. Maybe I exaggerated. "Deserve" may not be the exact word I was looking for. Earned a vacation? Merited a vacation? How about the honest truth? We want a vacation, and we're leaving whether you give us permission or not. Actually, Walter is safe saying he earned a vacation, having spent all of June and a good part of July working through and finalizing his department budget (including salary adjustments). It's me on shakier ground, having finished up summer school at the beginning of the month to devote myself full time to the job of Erin's chief social secretary and chauffeur until the fall term starts on August 27. This included planning and executing the following activities (since Thursday): Carpenter's Kids tour of the local television station and trip to the park and splash pad, an afternoon of volunteering at the church, a splendid dinner party at the Tjoelkers, the release party for Harry Potter 7 (how do you like Erin a.k.a. Tonks?), hosting Erin's buddy Aaron for swimming, Legos, and spy play, whooping it up at the rodeo (including participating in the calf scramble), and attending church. She decided to take it easy today, so I got some weeding done in the yard.

Anyway, whether I deserve it or not, we're off. To keep all you would be burglars flummoxed, I won't tell you our top secret plan to drive to Dallas on Thursday after Vacation Bible School, leave Dallas on Sunday, picking up Davis in Amarillo en route to Santa Fe, and spend the next ten days tromping the mountains of western New Mexico.

"Wait," you say, "Why is Davis in Amarillo?"

He's not yet, but he only wants to miss one Saturday of work at Maddens, so he is staying in town until Sunday morning, when he's catching a flight to Houston and then another hopper to Amarillo.

"Wait," you say, "If you are in Dallas and there is a direct flight from College Station to Dallas, why is he flying to Houston and then Amarillo?"

"Good question," I respond. "American Airlines wants $650 for that puddle jump, so we had to fall back to plan B. That the one-way flight, even through Houston to Amarillo, costs much more than Davis will earn working on Saturday is beside the point (at least to Davis, who apparently is not paying for the plane ticket to join the family on vacation)."

"How about medical news?" you ask.

"So far, so good," I reply, "I couldn't tell any difference between the etoposide CBC and the cyclophosphomide CBC: hemoglobin a little below normal, white count and ANC hovering right at the low end of normal, and enough platelets to burn."

"So, what's up between now and Thursday?" you ask politely, even though you are not all that interested.

"Vacation Bible School, soccer practice, a trip to Snook for PPR Day celebrations (I know, it's a few days late, but who really cares anyway?), horse back riding, piano lessons, and another trip to the UPA lab for blood counts." Can you guess who needs a vacation from their summer vacation?

Water, Water Everywhere

July 17, 2007

Eleven Observations Comparing Cyclophosphamide with Etoposide:

11. Etoposide is easier to spell.
10. Etoposide dose is 21 days out of 28; cyclophosphamide is everyday.
9. Etoposide is refrigerated (even when you travel); cyclophosphamide sits on the counter.
8. Etoposide is an ugly brown gel cap about 3/4" long; cyclophosphamide is a perky aqua blue tablet smaller than a mini M&M.
7. Etoposide is given at 6:00 a.m. rain or shine, school day or holiday; cyclophosphamide is given with breakfast.
6. Both require avoiding St. John's wort (are any of you thinking this is a great loss?), but etoposide requires avoiding grapefruit, while cyclophosphamide allows grapefruit consumption.
5. Cyclophosphamide requires an uptick in fluid intake (more water, juice, or if you think creatively, like Erin does, more juice bars, ice pops, Lil Scribblers, watermelon, cantaloupe, grapes, and so on).
4. Etoposide is a topoisomerase II inhibitor, related to the toxin found in the American Mayapple; Cyclophosphamide is a nitrogen mustard alkylating agent. What does that mean? Both are toxic agents that kill cancer cells, but they use different mechanisms.
3. Long-term use of etoposide sometimes leads to secondary leukemia; long-term use of cyclophosphamide sometimes leads to transitional cell carcinoma of the bladder.
2. Etoposide has allowed Erin's hair to grow back (somewhat thinly); hopefully, the same will be true of cyclophosphamide.
1. Etoposide has worked keeping Erin's tumors in check for the last 20 months; cyclophosphamide has worked keeping Erin's tumor in check for the last seven days.

Conclusions: Almost too close to call, though cyclophosphamide might edge out etoposide on most factors (except spelling and having a week off now and again). We will reserve judgment until we get twenty good months out of the new guy! In the meantime, we will head to the local clinic tomorrow to see where her blood counts will fall on this regimen.

So, in the spirit of adding more fluid into her life, Erin has spent the last week mostly in the water. Last Wednesday, she swam at Bill and Sue Burchill's with Adam, Nico, and Ian, and her new friend Bill. Thursday, she swam at the A&M Outdoor Pool with Carpenter's Kids. Saturday, the Mystic soccer girls came out to the lake for a swim and cook out. They meant to play soccer, but no one was willing to get out of the water long enough to put shoes on, so there they all floated, boated, jumped, and splashed, while the parents sat dockside enjoying water substitutes.

Erin also had her pal Clayton Sue Benson from Fort Worth in for Camp Buenger on Saturday for several days (and nights. . .is this reading like I haven't had as much sleep as I would prefer?), Those two girls' incorporation of water into their daily routine encompassed a range of activities. Many of them involved concocting strange brews, tonics, lotions, and potions (I think in anticipation of Harry Potter and the Deathly Hallows, scheduled to appear, then disappear from booksellers' shelves next weekend). They also built a model of the Gryffidor common room with craft sticks and sculpey (which as best I can tell had no relationship to water, but built on the HP theme) and followed a multistep process (that incidentally, according to the strict rules of wandsmanship, couldn't be started before midnight) for creating working wands. Check them out with "wand at the ready"!



Lest we forget the importance of hydration, Erin and CS insisted we spend the last afternoon at the Adamson Lagoon. There they made full use of the water slides, lily pad hazards, and other floating obstacles placed around the pool. They also managed to snag Nico while we were there for one last night of fun and fancy, with a three-person sleep over (I almost wrote a "three-way" sleepover, which might have crossed the line on this family-friendly home page).


So, that's it for now. See you at the water fountain.

So, I Promised You the Fun Part, Too

July 12, 2007

We snuck out of town on Sunday afternoon to get ready for scans that started at 7:15 on Monday morning. How did we get ready? By heading to the Kemah Boardwalk, otherwise known as The Family Spend-o-matic, for the evening, we guaranteed that we would all be tired enough to sleep through the alarm on Monday morning. For a low, one time price of a couple of jillion dollar, each person in your group earns the right to wear a stylish wrist band. Wait there's more. Proud displayers of wristbands, FOR NO ADDITIONAL PAYMENT, earn the right to stand in line at every attraction.


Some, like the train, required the heart of a lion to actually ride. Note the white-knuckled grip and brave, but terrified looks on these young passengers faces:

Others proved more sedate, as demonstrated in this short video of the Inverter. The blurs in the front two seats are Nico and Erin. I call this video, "Famous Last Words: Mom, What Does Inverter Mean?"




Adam didn't actually trust any of the rides that Erin and Nico wanted to ride, but eventually agreed to go on the Aviator. . .once:


He would not ride Pharoah's Fury with them, and who can blame him? We ended the evening, after a tasty meal at Joe's Crab Shack and more opportunities to have their guts shaken and stirred, with Erin, Nico, and Adam prancing and cavorting like water sprites in the dancing fountain.




On Monday, the children traded their blue outfits for green ones, and (at least for Erin) their amusement park wrist bands for hospital ID tags and a contrasting-colored, take-home-overnight IV.


Their reward for patience through, the IV placement/blood lab, the five-hour GFR test and the echocardigram (9 hours total)?


Well, an apple and a movie. Just after we paid (the outrageous) parking fee and pulled out of the parking garage to head to the theater, my cell phone rang with news that Erin's potassium (you remember, it was dangerously low in December?) was now dangerously high. "It was probably an error, but could you just drop back by the clinic for a re-check?" With dragging feet (remember it was 4:00 now, and we had been hanging around the hospital since 7:05 a.m., which begs the question of why someone had not tracked us down some time in the previous nine hours when we were just hanging out having blood draws every hour or two. Must have been late breaking, hot-off-the-press news.), we returned to clinic. . .where believe it or not, the nurse couldn't get the IV to work and told us to go home that we we try again tomorrow (I guess Erin wasn't in that much danger, after all). That's when we made a break for it, just in case someone with more authority rescinded the order. We made it to Ratatouille just in time (not that big of a stretch since it was playing on four screens with a new showing starting about every other minute or so).

The decision to bail turned out sound. As I mentioned in the last post, the re-done blood chemistries on Tuesday showed everything, including potassium as normal! After another long day at the hospital on Tuesday, we headed back to Bryan, arriving just in time for Erin to change into soccer cleats for practice and pickup games against boys teams. She had just enough energy on Wednesday to go to piano lessons, visit her third grade teacher (Jennifer Steen) and her very cute one-year-old Matthew, and swim at the Burchills on Wednesday. What did she do today? Headed out to Carpenter's Kids for an all-day excursion. Go figure. She had been in training for a long day all week.

You Can Breathe

July 11, 2007

For those of you holding your breath for news on Erin's scans, feel free to breathe. Erin made it through all of the various tests and scans on Monday and Tuesday with almost universally good news:

GFR (kidney functioning): normal
Echo Cardiogram (heart functioning): normal
Bone Scan: normal
CT Scan: unchanged from previous scan on April 4 (stable)
Blood Chemistries: normal
Complete Blood Count: adequate

One blood number came up a little high (TSH--Thyroid Stimulating Hormone), so we will keep an eye on it to make sure that Erin's thyroid was not somehow damaged as a result of all of the treatment she's had. While the number was on the high side, the clinical signs to look for if she had hypothyroidism (lethargy, lack of growth, weight gain) are completely absent, so we will watch and wait.

I will update you with the fun part and some picture later, but now I have to go pick figs, before it gets too hot. Before I leave, I would like to thank Davis for updating the site on Sunday and letting everyone know what we were doing. I slipped out of town without doing it myself.

A Short Vacation

Erin and Vickie are taking a trip to Houston for scans and will be back Tuesday. They took along Adam and Nico and made a visit to the Kemah Boardwalk. It had a variety of carnival rides, but none as appealing as the Lighthouse Lift. We are all looking forward for them to get back to town and for Erin to continue with clean scans.

Count von Count

July 4, 2007

Erin had monthly clinic last Thursday and passed with flying colors. Her height and weight were proportional, and Dr. Parr couldn't turn up anything worrisome (this mom could tell that Erin was feeling very well, partly from her vigor, but also from the fresh crop of inch-and-a-half-long hair that has filled in the spaces between her longer hairs that the ravages of last winter's serial illnesses left). On Monday she started her last cycle of etoposide. Pending stable scans and doctor recommendations next week, she will switch to cyclophosphomide tablets. We hope to continue getting good results for many more months.

We waited until Monday afternoon to get the results of her blood labs:

WBC: 3600 (a little low, but not dangerous; mainly she has a lagging lymphocyte count, which makes her a bit more vulnerable to viruses.)
ANC: 1900 (low normal; okay ability to protect against bacterial infection)
HGB: 11.3 (low normal, good enough to spark Erin's engine)
PLT: 330 (just where it needs to be)

The chemistries were also pretty good, though I suspect Heidi Russell will have something to say about her elevated BUN (31, when 7-18 is the normal range; this is something we watch because of the celebrex). Her AST and ALT (measuring liver function) continue to hover above normal, indicating (my interpretation) the constant irritation of treatment and its effects. Her sodium, glucose, and bilirubin were a shade low as well, but we haven't received a call from Houston with instructions or admonitions, so I guess we'll check them again next week and ignore them until then.

Other than the clinic appointment Erin is just doing the usual stuff. She has fit horseback riding in between the rain twice since we returned from DC, had a piano lesson, and wiled away an afternoon painting pottery with Carpenter's Kids from church. Katie Lockett spent the day and night on Friday, and they used much of their time together to don costumes and plan and put on shows. Mary Beth and Rachel (twin granddaughters of our next door neighbors and infamous kicker-outers of Erin's front tooth) arrived yesterday for a few days. We are all waiting (some not so patiently) for the Tjoelkers to get back from their vacation. We misted Adam's slugs for them while they were gone, but given our sorry stewardship of the Tjoelker's triops last summer, we'd like to have our friends back before we let them down again. Besides, Nico and Adam will need a couple of down days before we nab them for the scanarama next Monday and Tuesday.

I read a post today on the ACOR (American Cancer Online Resource) neuroblastoma site from my friend Angela Thomas (see her blog for her daughter Christi) who was updating the group about the progress Dr. John Maris of Children's Hospital of Philadelphia was making with the tumor cell line he grew from Christi's tumor (at the Thomas's request he named it FU-NB-06). He is studying it to see what made it so aggressive after it acted so gently and cooperatively for so long. This type of research is definitely interesting to me, because it might provide answers for us as well, since Erin's tumor (so far) has been compliant and indolent, but we know has the potential to turn on a dime.

Inside the Beltway

June 27, 2007

No one, and I mean NO ONE, likes to read vacation blogs, so I'm going to spare you all but the barest details of our DC trip. I can tell you that even the willful Willie missed us and is now lying obediently at my feet, patiently waiting for a gentle stroke or kind word which, he has discovered in our absence, is all he really needs to survive in this world (well, that and a little woodwork to nibble).

Here is a list of things we did:

1. Marine Corp Evening Parade
2. Museum of Natural History (two trips)
   
3. The Smithsonian Castle
   
4. Afternoon with the Edwards
5. National Zoo
6. International Spy Museum
7. Eight Congressional Office Visits (2 Senators and 6 Representatives)
8. Capital Tour--led by Congressman Chet Edwards (with hide-and-go-seek in Statuary Hall. . .Mr. Burke of North Dakota is "home base".)
9. On the House floor with Chet during an actual vote! Wow! Democracy in Action!
   
10. White House Tour (Erin refused to look at any photos showing the current administration.)
    
11. Supreme Court (the building not the justices)
    
12. Reach the Day Rally in Senate Park
13. Photo Op with Senator John Cornyn on the Capital Steps to Celebrate the Newest Co-Sponsor of the Conquer Childhood Cancer Act of 2007
14. And, so the list won't end on unlucky thirteen, we ate twelve meals, took six Metro subway rides and three Capital Hill subway rides, walked a marathon (estimate), and managed to sleep soundly every night.

Ian, Erin, Chet, Adam, and Nico on our actual office visit.

A rousing game of Hide-and-Go-Seek in Statuary Hall. Adam and Erin made it back to base. Nico is still hiding.

Okay, we also went to the World Children's Festival and added to the 60 by 40 foot mural of the United States made entirely out of Legos.

We didn't actually "Reach the Day," but we did add co-sponsors and raised the probability that the bill will actually get referred out of committee for a floor vote later this year. Like everything else with cancer Nothing is Certain, But We Always Have Hope.

Working for a Cure

We're laptopless in DC, but I found a computer that I could use for a minute to post this link to this morning's Eagle story about our lobbying efforts: http://www.theeagle.com/stories/062507/local_20070625024.php

Dave McDermand is the newpaper's best photographer. He wanted to capture our "grim determination" with our mission, rather than our usually smiling faces. We look kind of odd, don't you think?

Nelson Willie

June 21, 2007

Just a few days ago I was pondering Erin's approaching birthday and thinking how exciting it was that a neuroblastoma kid was still living with the disease almost five years after original diagnosis and more than two years after relapse. I had had my usual (annual) conversation with her about "what's something you will be able to do this year that you haven't or couldn't do when you were nine (or eight or seven)?" Her response: "Go to overnight camp. Remember, mom? You told me I could go to Mo Ranch next summer. . .and also next year I'll be old enough to spend the night in the Callaway House for A&M Soccer Camp."

Having your youngest put a decade in the can is one way to start feeling a little decrepit, but mainly I thought how old Erin was getting. How her interests will probably begin to change. How she is no longer a little girl, and soon she will leave girlhood behind for young womanhood. We walked along together, towards the horse barn for Erin's lesson, and I thought I saw a little touch of hips that hadn't been there the last time I looked and wondered how soon she would replace the smear of lip protectant sun block with lip gloss.

As we passed the GasTec propane gas tank farm, Erin pointed to the sign and asked: "Is that the stuff Nelson Willie was smoking that got him arrested?"

Mom (confused and wondering who Nelson Willie was): "I don't think anybody smokes propane."

Erin: "Yes they do."

Mom (thinking the youngest dog in the family had both a new nickname and a new way to get into trouble): "And who is Nelson Willie?"

Erin: "You know. He is the singer with braids that was on Monk one time."

Mom (clueing in): "Oh, yeah. I know who you're talking about. And you think he got arrested for smoking propane?"

Erin: "I don't know. That's why I was asking you."

Mom: "Well, I don't know whether you can get arrested for smoking propane, but I think if you smoked it, you would explode. I haven't heard of Nelson Willie having a nasty explosion, so I don't think that's what he was smoking."

Erin: "Okay."

Mom (thinking to herself): "Ten is not so old after all. She thinks Willie Nelson is a guest star on a detective show, and she doesn't really know what stuff, when smoked, can get you into trouble."

We walk along together, and when I reach out to take Erin's hand, she squeezes back instead of brushing me away. I walk on, with a little lift in my step at the realization that my baby's not almost out the door (yet).

Yesterday, Erin officially hit the mark. We celebrated at home, just family. By some strange coincident, my mother gave her the same thing she gave me on my 10th birthday: a Hot Wheels track. That would be funny if she had done it on purpose, but I think it is even funnier that she didn't. Walter and I bought Erin a bicycle because her knees were hitting the handle bars of Davis's hand-me-down that she had been riding. I was glad we did after recently reading about "No Child Left Inside," an idea taking hold across the country to pull kids away from tv/computers/video stations, etc. and get them playing outdoors more. According to the article, American children spend 6.5 hours A DAY in electronic-mediated activities. We even shot some video showing Erin, Davis, and Willie approaching the sound barrier, or at least 17.5 miles per hour:



So, yesterday was Erin's birthday. Today is the first day of summer (a laughable concept if you live in Bryan, Texas where the thermostat started showing 90+ readings over six weeks ago). Tomorrow, Walter, Erin, and I will jet off to Washington D.C. for another round of lobbying, hoping to Reach the Day. We will visit on Capital Hill in support of the Conquer Childhood Cancer Act of 2007. If you can't join us in DC or drive to one of the many state capitals where joint "Reach the Day" childhood cancer awareness events are planned, at least be there with us in spirit, helping us choose the right words and appeal to those who hold the power to authorize $150 million towards pediatric cancer research over the next five years. It wouldn't hurt if you could also help us ward off those nasty airplane germs that made Erin so sick last time she flew.

Splashin' Good Time

June 17, 2007


I should have taken a picture of everyone gathered around at Erin's birthday party on Friday. Instead, I got this lovely picture of the cake with several feet and a load of shots of Erin taken individually with each of her guests. (Erin's friends decorated door hangers with photos of themselves and Erin as party favors.) This is the shot of Ayesha used for hers:


We managed to get in a splashin' good time between thunderstorms. I would write more now, but we are all getting ready to watch the Rice Owls in the College World Series. Drop by later this week for a more complete report.

Jezebel

June 15, 2007

Wickedness must run in the family. The culmination of music camp today was a production of Elijah!, and your favorite little Buenger trod the boards as Queen Jezebel. While the script stopped short of defenestration, it definitely called for Erin to act haughty, arrogant, and rude. Here is a two minute, poor quality video of one of her numbers. You can get the gist of it by skipping the first half minute and then watching about 15 or 20 seconds. Notice that Nico is serving as her Guard, even though it meant that he had to be a follower of BAAL.

Gemini

June 12, 2007

From what I can tell, September must be the month for Lovers. How do I know? Erin has fielded birthday invitations left and right since school let out, and we've had several e-mail messages from fellow Geminis as well. Do the math. To have a June birthday, something must be going on in September. Instead of summer romances petering out in the dog days of August, couples appear to get it together by the time the weather starts to cool (I'm talking hypothetical cooling here in Texas, not actual cooler temperatures).

This picture is fellow Gemini Noah DeAtley (in the middle, doing his best impression of a very cool and handsome pre-teen). Joining Noah and Erin is Aaron "A," so named to differentiate him from Erin "E" when they have the same teacher in school.


Here is Aaron looking less like a bug and more like the handsome young man he is:


I have casually checked our family's horoscopes a couple of times a week for years (maybe even decades). I started looking over them when the local paper added them to the comics page. I read both for laughs. The problem is that for Erin's whole life, I have checked her horoscope as Cancer, not Gemini. I'm not sure how I got it wrong, but today when I received an email from cancer mom, fellow-Gemini Margot Hutchinson (see her lovely son, Sam's, website here), I figured out Erin's Not Cancer. She's Gemini. Doesn't Gemini sound so much better than Cancer? So much better, in fact, that I will assume it's a sign to be taken literally as well as astrologically.

So, what's your sign? Erin's is Not Cancer. I hope all the children with cancer learn that they are really Geminis today.

Head West

05/25/07

Yesterday was the last day of fourth grade for Erin, so I packed her into the car and headed west. Can you think of a better way to start summer vacation than with a long weekend in Round Rock, partying and relaxing with Ayesha and her family? Before the litany of summer fun begins, let me give you a run down of the last week of the school year. Buckle your seat belt!

As I mentioned, we brought Aunt Kat and Emma back with us from Dallas, which was a source of alot of fun. Erin was a much-in-demand slide partner at the park:

Erin and I also had a blast at the Red Hot Chili Peppers End-of-an-Era Bash at the A&M Rec center. This is Katie, Cat (not Aunt Kat), Erin, and Marla making the most of the college pool experience.

What a way to warm up for four days at the coast. We had never stayed at Port Aransas before, but now consider it a possible destination for future beach trips. On the plus side: we had the nicest, best-maintained condo accommodations we've ever had at the beach and better shells than we usually find in Galveston (both my mom and Erin found whole sand dollars). On the minus side: the easterly wind had blown in loads of sargassum (sea weed) which piled up on the beach edge, and perhaps most damning, the restaurants tended towards mediocre. On the whole, we had a fine beach experience.


Even Walter and I loosened up to have some fun:


You should ask yourself, why is Walter laughing? Is it because I have just told an amusing story? Or is it the only reasonable response to being surrounded by "The Ladies" while vacationing?


Erin continued to prosper when she returned to school on Monday. During the end of year awards ceremony, she received the President's Award for Educational Excellence, along with Jesse, Jackson, Morgan, and of course, Nico. Monday evening brought her season-ending softball game and trophy party. The Tornadoes managed to scratch another mark in the win column, but the season was a lot more about getting used to kid pitch and new stealing rules than about winning ballgames. She ended up playing about two-thirds of the game at short stop (a new experience and one that I had to question the coach's wisdom about. Erin can field almost anything on the ground, but I just don't think she has the oomph to throw the ball across the diamond.)

Erin has finally put the spring to bed, making it through another grade (something I always hope for, but never count on) and garnering heaps of awards and accolades in the process. Her final report card demonstrated her excellent mastery of everything tossed at her this year. Her reading scores place her in the 99th percentile of children her age, and I think her math is slightly better than her reading. We shall now relax and take it easy. . .you know us.

Mish Mash

05/16/07

Not only will this journal entry feel like a mish mash of topics and activities, so do our lives. For Erin school is gradually winding down. Last Friday was Field Day, which apparently involves mayhem, loud squealing, and a variety of relays designed to transfer water onto the participants. I didn't attend, but my friend D'Anna sent me these two pics of Erin resting between events. I loved it because she captured Erin in a rare un-posed moment and then turned around and got the Erin gleam.
We did try to take it easy on Saturday, but Sunday was another story. Our Day of Rest found us listening to Erin sing and ring with the children's choir and children's bell choir at church before she and I slipped out of the sanctuary (pre-sermon, oops) to dash up to Garland for Aunt Elisabeth's Business Debut with Mary Kay Cosmetics. That's right. My sister has become an MK Commando! When we returned to Bryan Sunday evening (3.5 hours each way, for those of you trying to imagine the dimensions of our day), we brought Aunt Kat and Emma with us.

Monday brought the beginning of a new era, with the first (of many) social opportunities for the new Mystic '97 girls soccer team. We had pizza (and a few other dinner additions with healthier content), several rounds of four-way Mancala, and a lot of giggling and bonding. I slipped away after about an hour to join Walter and members of the PNC (Pastor Nominating Committee) who were simultaneously celebrating the victory of hiring a new pastor and the, perhaps larger, triumph of dissolving their committee, having fulfilled their mandate.

Yesterday Erin rode Napoleon and produced buckets of sweat in the 90+ degree weather. Napoleon seems to be behaving better, although I wouldn't consider him the politest horse I have ever met. He can't seem to keep his mouth to himself, so Erin has to keep a constant eye on his head. In contrast, Jericho, behaves almost all the time, but is not yet ready to perform as a lesson horse. He has conquered most of his fears, but when he does get scared he bucks. Oh well, I guess we'll stick with the lesser of two evils--if it's nip and buck, we'll stick with nip.

After cooling down, resting a minute and grabbing an early supper, we headed to the softball game for her penultimate game this season. After a tough first inning, the Volcanoes settled down. Erin fielded cleanly, but had a tough time getting her throw down last night. Her bat didn't leave her in the lurch though. She made contact both at bats, grounding out to second her first time up and hitting a sharp grounder right inside the third base line and out into left field the next time. Through a combination of aggressive base running and fielding mistakes, she ended up on third. She really thought she had hit a triple.

Just as we began a new era with the Mystics, tonight marks the end of an era with Erin's rec soccer team, the Red Hot Chili Peppers. This afternoon we will head over to the University rec center for indoor soccer, rock climbing, swimming, and who knows what else. This big party is just a warm up for tomorrow when the Buengers (and the rest of the Luquette women, Moo, Aunt Elisabeth, Annabelle, Aunt Kat, and Emma) head to Port Aransas for a pre-summer beach outing. Hopefully, we will return with everyone's appendices (and other essential and non-essential body parts) intact (See the 06/17/05 entry in the archives if you have no idea what I'm talking about).

Since we are leaving on vacation, I feel some obligation to set up a trip for you, so that you don't languish at home. If you are in the mood to travel, let's go.

Today on the Vickie Travel Channel, you will visit with three children who have been in the game as long or longer than Erin. We'll start with Sarah from North Carolina. Sarah is close to Erin's age and also has a fantastic older brother (getting ready to leave for college next year). She had a local relapse after being NED for quite a while, but she responded exceptionally well to treatment and (I think) is now just watching and scanning, rather than treating. Next is Zachary from Florida. Zachary has been at this a very long time. . .long enough to move out of childhood into the early teens and put his parents in that unique dilemma of celebrating his life, while the having to put up with the natural antics of a junior high kid. Harrison has one of the first neuroblastoma websites I started visiting. His family really puts the face of joy on everything they do.

The final place I'm sending you today is to Laura's place. Laura died right before Christmas last year and her corgi Kirby died this April, also from cancer. You may be thinking about skipping this destination because of the pain of looking in on someone who has died. I encourage you to stop by anyway. Laura's mother is a gifted writer and ably captures much of the emotional and psychological gamut experienced by cancer parents and a very gentle and sensitive way.

If you have made it this far, you might also want to go to the movies. Remember Penelope? Her father has spent the time since I last sent you to her website trying to convince pharmaceutical companies to release potential treatments for her on a compassionate basis. The Wall Street Journal picked up the story and shortly after that the following video appeared on MSNBC

http://www.youtube.com/watch?v=FnxaOx6anEw

Saying "No" to Penelope

This is a video from MSNBC.

A Mother's Day Tribute: My Nasty Maturalist

05/12/07--Part II

My mother, whom my children call Moo, moved next door to me in December 1998, when Erin was a year and a half and Davis was almost eleven. I've fielded the question, "How can you stand to live next door to your mother?" and Walter has fielded the son-in-law version (frequently spoken with much more bite) hundreds of time. All I can say is that it was our blessing.

My mother doesn't look or act like a traditional grandmother. She's more likely to be in the kitchen whipping up a pot of shrimp gumbo or a batch of spicy party mix, than oatmeal cookies. When she stays with Erin so Walter and I can catch an evening out, I'll leave them playing and return to find them playing. Of course, it's never dolls or video games. Instead, it might be a lively game of witch, where my mom pretends she is just like The Witches in Ronald Dahl's book, with a bald head and square feet, and Erin pretends she has to figure out and foil the evil doer. They also got at it hammer and tong at poker, Shoot the Moon, and Scrabble. According to Davis, she's daft about tomatoes and taught him to eat them with gusto. She's always up for a walk, whether it is at night with flashlights, just down the road for a quick look around, or all the way round the lake to check on the Monarch caterpillars in the milkweed by the dam or to look for deer tracks in the picnic area. What other grandmother do you know who would do ACL surgery on her knee at 60+, so that she would have a strong enough stride to pull Erin down the road in the wagon all those times during treatment when she wanted a walk, but needed a ride? Though active to an extreme (she could turn the home-to-second-to-home double play as a fast-pitch second baseman well into her forties), she reads more and more widely than anyone I know, and is always willing to talk books.

Most importantly, she is a living model to my children and me on three things she considers crucial: living a balanced life, as suggested by the Aristotelian mean, finding harmony in life, and living a genuine life (such as Polonius advised Laertes in Act I, Scene 3 of Hamlet "This above all – to thine own self be true.").

She carries out these three things in everything she says and does. Doing so has put her ahead of her time much of her life. Her main passions are nature and environmentalism. She drove a high gas mileage car long before it became de rigeur among celebrities. She opposed the war from the start, because it implied that oil was more important that human life. She made choices that showed how she valued life on this planet. As Davis told the world in a tongue-tied KEOS public service announcement last year, she is a Nasty Maturalist (what he meant was that she was a Master Naturalist, trained and committed to understanding and making the most of our natural world).

When people ask me how I can stand to live next door to my mother, I say, "Who wouldn't want my mother for a neighbor? The world would be a much better place if she was everybody's neighbor."

Happy Mother's Day, mom. I Love You.

Mystic

05/12/07--Part 1

Erin made the team. She is now officially a member of the ASC '97 Mystics.

In other quick news:

Congratulations Jennifer Channing, my cousin John and Betty's oldest, who grduated Magna Cum Laud last night from A&M. Have fun on your trip to Italy! My cousin Kyle and his daughter Kylie came in for the occasion. Don't they look like professional models?

Stalker

05/07/07

I didn't update you earlier about Erin's soccer tryout, because the club postponed it last week after heavy rains. She'll have another go at it this evening (and the rest of the evenings this week), and I'll let you know how things turn out. In the meantime, we figured out how to stay out of trouble. Erin walked home from school with Nico on Friday afternoon, so that I could give a couple of final exams. That evening our family attended a Cinco de Mayo fiesta at the Villalobos's house. Apparently, we called it a night just in time. Soon after we departed, the dance-portion of the party began, and all the children and adults danced in earnest to body-rattling, teeth-jarring music with lyrics you prefer your children didn't sing along to. Whew! Dodged another bullet.

Saturday, Walter carted Davis and the remainder of his stuff home from Rice. I think he is having a bit of trouble living on the ground floor again, having spent the last nine months a few flights up. We had a most enjoyable evening Saturday night, sitting on the deck and staring at the sunset. I don't think Davis (or really any of us) had slowed to that pace in a long while. I will update The Davis Report with more details when I get a chance.

Sunday brought a happy day for our family. Walter presented the Pastor Nominating Committee's recommendation to the congregation, who approved calling Reverend Ted Foote to Bryan. Welcome Foote family! We'll see you in July.

Sunday also marked the end of the adult soccer season. I am bursting with pride to tell you two important milestones associated with Sunday's season finale. 1. We played a perfect season. . .no wins to lead to an inflated ego in this house. 2. I played a perfect season. . .no injuries, serious or otherwise. If everything goes as expected, Lisa will return to the line up in the fall and relieve me of goal keeping duty. I'll probably be begging to get back in the goal the first time I make a run down the field in the 90+ degree heat next September, but until then I will imagine how fast and skillful I will be.

Another thing that has happened in the past couple of weeks is that I have added an invisible counter to Erin's page. The counter that you see at the bottom of this page is fine for registering hits, but not much else. Our new counter (that you can't see) keeps track of the country, state, and city where each visitor originates. I can't tell you how much fun it is for Erin to check the stat counter and see visitors from across the country and around the world. In the last two weeks we have had folks drop by from seventeen different countries, thirty-two different states, and 128 different cities. I suspect most of them stumbled on to Erin's website by accident looking for Erin Brockovich or some other celebrity Erin.

This counter is not problem free. One day last week or the week before (some occasion when I was updating the journal), I took a look at the counter statistics and noted that there were a dozen or more hits from Tyler, Texas. I thought to myself, "Oh, poor family. They are probably recently diagnosed, and have found Erin's website, and are looking back through the archives for details about treatments. I do hope reading about Erin will inspire them and provide hope that things can be bright in a cancer patient's life."

The next day, as I continued to work on the journal entry, I noted that we were still getting a lot of hits from Tyler. I thought, "Wow, those folks are really thorough."

I few days later, I noticed that Tyler had more hits than any other city again, even College Station and Bryan, where we live, and Houston and Dallas where we have friends and relatives who I know read regularly.

I began to have second thoughts, "What if there is a crazy, mad person living in Tyler stalking our family? What if they are studying the details of our life through the website? I've included a lot of details on the site, including our address and phone number. I often tell everyone when we are headed out of town. Ack!"

I spent the next couple of days worrying about the Tyler Stalker and wondering what precautions I should take on behalf of my family. At some point during the process, I chanced upon an embedded feature of the stat counter. I can drill down in the data and actually see the IP of the connecting computer. IPs are usually expressed by long numbers with decimals in them, like xxx.xxx.xx.xx.xxxx . Because they are just numbers, there's really no reason to look at them, but I did. I thought "Ah Ha! Now, I have evidence against this person who keeps visiting Erin's website. If I really get nervous, I can show this to the police." Then, as I stared at the screen, I had the DUH moment. There sitting right next to the IP address was the Host Name: SuddenLink. I realized I had been stalking myself. The more I checked on Erin's website to see what damaging secrets I was including, the more times stat counter registered that a person from Tyler (i.e, that a person using the internet service provider, SuddenLink, whose server is housed in Tyler) was visiting.

Don't tell anybody, but I'm the information system instructor in my department.

Doing My Part with a Hybrid

05/03/07

Celebrities drive them. Environmentalists promote them. I have a hybrid, and I think I'm going to keep her. She's not exactly a gasoline/electric hybrid. She's a long-term survivor/still-in-treatment hybrid. At least that is what I learned when I took Erin to clinic yesterday. It began with the question, "So, Heidi, Erin will hit the five year mark since diagnosis this summer. That is half the milestone you need to be moved into Zoanne Dryer's survivor clinic at TCH [aside: being off treatment for two years is the other]. Is someone on the solid tumor team keeping track of the issues that the survivor clinic would monitor? You know, things like late effects from treatment?"

Heidi looked at me like I was clairvoyant and said, "That's exactly what I've been wondering."

It turns out no one has. So, when scan time rolls around again in July, we will add some additional tests into the scantravanganza: echocardiogram (heart function), GFR (kidney function), and extra blood work (thyroid function and growth hormone function). In the meantime, Erin appears to be doing so well [cue drum roll] that we have the thumbs up to schedule clinic for her locally both in late May and late June. That means Houston is a recreation-only destination for the foreseeable future. Blood counts were especially robust yesterday, and included a hemoglobin count of 12.1 (normal) as well as normal white count and platelets. Heidi downgraded her assessment of Erin's counts from AAA to AA because she was running fairly high on the eosinophils (which are an indicator of allergic response. . .go figure. We live in the Brazos Valley, Motto: "If the Pollen Doesn't Get You, the Mold Will.").

We have also opened talks (which may turn into serious negotiations in July) over whether to switch Erin off of oral etoposide. Heidi recommends moving off of that onto an oral version of cyclophosphomide, which she thinks is incrementally better on almost every dimension. The big concerns for continuing etoposide is that Erin's tumor may become resistant to it and/or she may develop secondary cancers from taking it so long. The big concern for stopping etoposide is that something else might not work as well keeping Erin's tumor pinned to the mat. I'll have to research it for a while, so if you have any thoughts, experience, or comments about it, drop me an email.

In the meantime, we had Erin tested again to see if she has ever had Epstein-Barr virus. If she has, then she would become a candidate for Heidi's latest vaccine program. I'll let you know if EBV was one of the many things that plagued Erin last winter.

Before I close, I would like to tell you that Willie was not the worst dog in the world this week. A friend of mine has an old German short hair (as well as a couple of other dogs, whom she wouldn't mind sharing with a needy, but clueless, family). On Tuesday, my friend was out doing works of great and selfless value (delivering meals on wheels to the homebound). She received her first round of punishment for this good deed when the sky opened up and let out a massive thunderstorm, which seemed to intensify every time she jumped out of her car to trot a meal up to a house. The second, more long-lasting punishment came when she arrived home to discover that her old dog, crazed by the storm, had removed and eaten the sealing gasket from her refrigerator door. That's right the refrigerator still cools, but now she has to use duct tape to keep the cool air in. . . at least for the next week while she waits for new parts. For a moment, Willie shines in comparison. I can only wonder how he will top that.

On the Pitch

Belated thanks to everyone who bought lemonade at the Alex's Lemonade Stand hosted by the elementary Sunday school classes at First Pres on Sunday. Alex's Lemonade Stand Redux will be held between Sunday school and worship on the patio next Sunday (5/6). The children have loved helping others and running a lemonade stand! All proceeds go to support childhood cancer research.

04/30/07

You may want to take cover. I'm about to wax nostalgic about youth sports. It was nine years ago this month that Davis told us he was going to try tryouts for the local competitive soccer team. The announcement astonished me. Davis wasn't the best player on his recreational team that spring. He wasn't even in the top three. I would have been hard pressed to swear he was in the top half. No one else on his team tried out. As best I can recollect, no one else in his whole league tried out. Davis did, along with seventeen other ten year olds. Eighteen boys made the team. The Buengers' lives changed.

At first, it was just a matter of juggling the lawn care and the gardening schedule, so that we fit it in on Saturday mornings before we left for Houston or even pushed it back to Sunday afternoon some days, if we had an especially long road trip. By the end, our yard was no longer the envy of the neighborhood, and we bought tomatoes from the store in the summer if we wanted them. We started out with a sedan, but soon traded up for a van, not just for gear, but to carry other boys along. By the end Walter and I each drove minivans, in case we had to take the whole team somewhere. As newbies, we hollered "Kick it!" or "Clear it." After a few years we knew enough to suggest "Composure" or perhaps just "Easy." In the end Walter rarely spoke at all on the side lines, and I just added the occasional "Well struck." We eventually understood what the referee meant when he signaled off side and knew the difference between a foul with advantage and one without. One birthday, Davis chose to take three buddies to a 3 v 3 tournament in lieu of a party, and we thought it a grand choice.

Competitive soccer tryouts for Erin's age group start tomorrow, and much to my astonishment, Erin will be there. I say astonishment, not because she is not capable of trying out and making the team. She is. In the Neuroblastoma world, children in relapse rarely feel like running around the soccer field, especially at that level, and frankly, most parents can't honestly sign a contract that commits their child to play for a year. Not the Buengers. We'll gladly sign the bottom line. . .and put up the money. Walter was even talking last night at dinner about trading in his sedan for a second van again. All I can say is that if you need us. . . look for us on the pitch.


Not much else is going on around here. Walter has moved the church one step closer to having a new (and I believe splendid) pastor in place by the first of July. Davis has knocked off all of his finals and is wrestling his History of Science term paper to the mat as I write. Erin had a break from school today, because the teachers needed one last work day to get organized for the final run to the finish line. She and Nico and Adam spent the day doing their usual stuff, which, as always is top secret, as well as incomprehensible (at least to me).

I did take the opportunity to meet an old friend on Saturday. Angela Thomas, matriarchal head of the Thomas Team and mother to angel Christi and angel on earth Shayla, and wife to the uberbanker Shayne, flew into Houston on Saturday on business. She graciously made time to visit. We had both thought that our daughters (same age, diagnosed within a month of each other, witty, creative, and bright) would meet some day and share laughs about their silly old mothers. Sadly, it will never happen. Christi had a good run, but not good enough for those of us who loved and admired her. Christi died last September, but she is a child who continues to bring out the best in people, even those like me, who never had the privilege to know her. You should stop by her blog or her permanent website christithomas.com and get to know her, too. You will find your heart and imagination growing as you read about her. Here are Erin and I wearing our new Ohio State shirts in honor of Christi's cat, Buckeye (who I am told was named after the candy and not the university mascot).