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).

Second Strike

04/24/07

Wicked, wicked, wicked. That's what I am. I didn't actually play fairly with you last week. I pretended to give you a respite from the grind, by sending you off on a cross-country adventure through website land. Sending you wasn't the problem. I suspect that those who wanted to travel did. Otherwise you stayed home. The problem arises because I sent you one place and immediately headed out for some place better. You had to cope with the reality embedded in each website, and in the meantime, I was lolling about on the banks of the Guadalupe River like a sun-drenched river otter. That's right. Last weekend the Buengers hopped in their car and headed to one of their favorite spots, Mo Ranch Family Retreat, where they traded cellphones, email, weblogs, and television for hiking, horse back riding, and river swimming.

Those of you who follow the Willie angle (DO NOT EVER, EVEN FOR A MOMENT, SWITCH THE "l" and the "e" IN THE PRECEDING WORD) are probably wondering what he did in our absence. My mother (who has mentioned twice in the last month that she doesn't get much space in the journal. How's this for customer service, mom?) volunteered (I use this word very loosely, sort of like when parents volunteer to clean up their pre-schooler's vomit) to watch him, and Uma and Luke. As best I can tell, he inflicted very little damage to the house in our absence, and everything that I noted could be classified as Nibble Damage, as opposed to Chewing, Gnawing, Crunching, Chomping, or Masticating Damage. In fact, he fell far short of the usual verb categories: Ruin, Wreck, Destroy, and Demolish. And for that I am grateful?

Mo Ranch is not a working ranch, much to Erin's dismay, but it is a 500 acre camp and conference center nestled in the north fork of the Guadalupe River west of Hunt, Texas. Getting there takes some trouble, but once you've arrived, you immediately slow your pace and set your cares aside. Celtic tradition has a word for spots like this. They call them "thin places," to denote somewhere that the material world and the realm of the spirit come close together.


Erin claims she loves Mo because of the horse back riding and opportunity to play by the water's edge, which is true enough.














I know the truer story. When we go to Mo, Erin believes she has total freedom. It is a place where everyone does what he feels like doing. Want to hike? Go ahead. Read a book? Go ahead. Take a nap? Fish? Canoe? Romp? Build crafts? Sure. At 9:00 p.m. when Erin looks out the window into the pitch black and says, "Mom, can Nico, Clayton Sue, and I go exploring." I say, "Sure. Take a flashlight." She pauses for a minute to consider whether I have lost my mind, then skitters out the door before I recover. Have I lost my senses? Notice that I said that she "believes" she has total freedom. With 117 other folks from out congregation along for the weekend, it would be awfully difficult for Erin to actually stray into trouble without someone showing up to warn her off or even rescue her if she needed it.

So, if she wants to swim in the icy cold river until her skin turns blue, I say why not? And I mean it.
We got back to town Sunday evening and have had a hard time matching the pace of the normal world. Oh well. We'll catch up eventually. Erin had her follow up appointment with the ENT doc today. As best he can tell, her fluid has cleared, although the right ear has some lingering scarring behind the ear drum, I suppose from the serial ear infections. Anyway, the bottom line is no ear tubes for now, which makes us very happy. We also had week three counts done today. Erin's hemoglobin was a hair under the normal range today, and everything else looked fine. We'll have clinic in Houston next Wednesday and barring the unexpected will start in on the 18th round of etoposide the following Monday.

By now, you may be wondering why I called this entry "Second Strike." The first strike was sending you to Penelope's page last week. I enticed you into taking a look at a child suffering and her parents trying to make sense of it all. It might have depressed you or made you cry. If you read this journal for the fun of it, to catch up with Buenger highlights, or for some other light hearted reason, sending you to that page probably wasn't what you hoped for. If that describes you, you should stop reading right now. I am going back into advocacy mode. What I am about to show you is gruesome and will ruin your day. Frankly, it may be too much to look at.

This year's Pulitzer Prize for feature photography, announced last week, was awarded to Renee C. Byer of The Sacramento Bee for ''her intimate portrayal of a single mother and her eleven-year old son as he loses his battle with cancer.'' The boy had neuroblastoma, and these photos show something that every cancer parent fears more than anything.

Last week I sent this link to the Senators from my state, telling them that this is every cancer parent's nightmare and asking them to sign on as co-sponsors to Senate bill 911 which support funding for research for pediatric cancer. I would like you to do the same for your Senators and your Representative (HR 1553), if they are not yet sponsors. Half the children we know diagnosed with neuroblastoma will die unless we make progress towards a cure. Almost all of the ones who relapse will.

Background information in case you decide to write: 13,500 children will be diagnosed with cancer in the US this year. Most will never know the cause. A lot of them won't survive, and those that do may have to cope with severe effects from the treatment that saved them. While 13,500 is a big number, it is not big enough to catch the pharmaceutical companies' attention. There is not enough profit in designing, testing, and seeking approval for drugs and treatments for a population that small. In fact, as best I can tell there have only been two drugs developed and brought to market for pediatric cancer in the last thirty years. Everything else are hand-me-down drugs developed for adults (that children had to wait a long, long time for). In instances when the free market fails, as it does with finding a cure for pediatric cancers, the government has a responsibility to help. There are two bills in front of Congress (S. 911 and H.R. 1553) right now to further the fight for cancer funding for children. The Senate bill has one sponsor and six co-sponsors (click here to see the bill and check if your Senators are in). The House bill has one sponsor and 53 co-sponsors (click her to see the bill and check if your Representative is in).

My Congressman, Chet Edwards, is on the list, but my Senators (and yours if you live in Texas) are not. I think they should be and told them so through an e-mail to their website. You can find who represents you in Congress by clicking here. It will be worth your time. Ask them specifically to sign on to the bill as co-sponsors. If Senator KBH tells you the Conquer Childhood Cancer Act never made it to the floor last year for a vote (and by implication that she would have supported it), ask her why she never signed on as a co-sponsor and encourage her to do so now.

I wouldn't ask you to do this if it weren't important.

You Deserve a Vacation--First Leg

04/18/07

That's right. You deserve a vacation, and I'm here to give it to you.

The Buengers have already started to make summer vacation plans. First up? A long weekend at the beach at Port Aransas in May. Walter, Davis, and I will have our semester flushed, and Erin doesn't mind a respite from the grind from time to time. DC is on the calender for late June, and we hope to get to somewhere cooler once the heat sets in in the second half of summer.

In the midst of end-of-semester grading, student hand holding, and generally not having enough time to keep up with grocery shopping and laundry, I am more than ready. I'll bet, you too, feel the lazy, hazy days of summer approaching, though not quickly enough. It's in that spirit that I invite you to take a journey with me. No, I'm not inviting you down to your local library for a mind-journey into literature. Over the next few days or weeks (I envision this as an occasional foray), I want you to take the trip I take every morning. Come along with me as I visit children with neuroblastoma.

First, I stop in to take a peek at the local kids, all treated by Heidi Russell at Texas Children's in Houston. This will be a breeze. Everyone is doing well. Even Colby (first picture below. . .imagine his mother's delight that he covered his hands with permanent marker) who relapsed after Erin is having a great response to treatment. Colby recently had scan results that showed his tumor load improved, so everyone at their house is riding high. I also usually stop by Hannah's place. She has been out of treatment for a really long time and her parents don't update her site very often. Still, I stop by every morning, and last week I was rewarded for my loyalty with a new long and heartfelt entry. Ryan (shown with his beautiful sister Haley, who apparently has a voice to match her looks) now sports a a full head of curls to go with the impish smile he never lost. CD, who does much of the writing on Ryan's website, would love for you to add a note to Ryan's guestbook. He is especially fond of the Aggies (NOT) so you should highlight them in any comments you leave. Ryan had a nontraditional path through treatment ,and it took a long time to get free of the cancer beast, but their family pulled together strongly.

For those of you who love the west coast, I also check on Sam in California. Sam shares Erin's red hair and love for soccer. He has two younger brothers (Charlie is in the picture with him), and I think the pack of them move at a pretty fast pace. Earlier this spring, Sam's great Aunt (whom I admired almost beyond words) Molly Ivins died. If you scroll down to last week's entry (April 12) you can catch a glimpse of the pre-scan experience that I write about every few months. His mom captured it to a T. There is a link on the main page of Sam's website that takes you to a site called Magic Water. Magic Water supports parent-driven pediatric cancer research dedicated to finding and funding promising treatments, quickly bringing them into the clinic to save as many lives as possible.


Sam's dad works diligently to find ways to help children before it is to late. He and Penelope's dad have made great strides, but for Penelope the time is running out too fast. For the past many weeks, she has been held in the loving arms of her family, while they hope for a miracle. I know that none of you want to spoil this vacation journey by think sad thoughts, but these parent's love for their daughter is too heart-felt and well-expressed for me to let you pass them by. Don't stop with the most recent entry. Click on journal history and read a few of the entries to appreciate the love and humanity created by this little girl.


I've sent you to Spencer's website before. His dad doesn't update that often, and there is rarely very much information about treatments or symptoms or concrete things that parents look for when they cruise the internet. In fact, the site isn't all that "useful" at all. But boy does it make me laugh. I think I'm going to stop adding new places to visit right now, just in case you get a hankering to dig into all the past entries on Spencer's site. If you're up to it, start with the first one, back on November 11, 2002 (that's right, they've been in the game almost as long as we have) and go from there. Now that I have single-handled undermined North American productivity for the rest of the day, I'm going to sign off. Don't come looking for me, I'm reading Spencer's journal.

Not Too Young to Wear Purple

04/13/07

I failed to do justice to last week's scantravaganza with either wit or photojournalism. In some ways, it was enough to announce that our stool hasn't started to wobble (translation: things remain stable). Still, I'd like Erin to have this diary when she's an old survivor and read about the fun that we mixed in. In that spirit, here are a couple of photos (before and after) from the Lighthouse Lift at the Houston Aquarium on Tuesday night. Both are completely staged by a couple of professional hams.

Before twenty-five rides on the machine that carries you up thirty feet into the air and then drops you (Alternative title: A Good Day with Cancer):














After twenty-five rides on the machine that carries you up thirty feet in the air and then drops you (I think you can click on the image and get a closer view of Erin and Nico's interpretation of A Bad Day with Cancer):















I even used my still camera to take some motion video. If I can figure out how to set that up on a sidebar, I will.

Since Scan Day, we have charged into April: three softball games, two birthday parties for Davis, a craftfest at the church, two soccer practices, an Easter performance by the Carter Creek Brass, a Walter/Vickie dinner date, dental sealants for Erin, horse back riding, and a quick trip to Houston to return Davis to Riceland.

For Easter we coordinated our outfits with Erin's. To hell with "When I Get Old I will Wear Purple." I decided the right time was right now. We even managed to throw off our coats long enough to snap this shot.

Erin's blood counts on Wednesday showed that all was still right with the life fluid circulating around her body. All the different numbers we pay attention to (hemoglobin, white counts, and platelets) met the minimal standard for normal. She brought home another satisfying set of numbers yesterday: a fantastic report card. Only one more six week grading period and Erin will become a fifth grader, or as Walter told her at breakfast this morning, "You'll be on the top of the heap at Mary Branch!" I, for one, am not in that big of a rush to get to next fall. In fact, I'm not in that big of a rush to get to next week. Instead, I plan on enjoying the weekend end-of-season soccer tournament and the sleepover Erin planned for this evening. I will also tune my eyes on her singing "Feed My Sheep" at church on Sunday. If the timing works out, she may do Walk/Trot Equitation in the BAHA Spring Horse Show and that would be great, too. Davis played in the semi-final match of Rice soccer intramurals last night, but I don't know the outcome. Tomorrow is the day of the re-scheduled Beer/Bike race. I will update the Report with birthday pics and other stuff when I find out the results of those two biggies. Thanks for stopping by! P.S. No news on the Agent Cool Blue front. I did make it through to the automated consumer help line, which helpfully read out loud the information in the press release and directed me to my health care provider. Since I have heard nary a word from my HCP, even though I emailed with specific questions, I am going to put my concerns on hold.

Agent Cool Blue

04/12/07

Just when I think I can enjoy a worry-free moment, something happens that places all bets off. I followed my usual routine this morning, snuggling in bed between 5:15 and 5:45 listening to Walter's morning routine: dress, walk dogs, allow dogs to rough house and bark incessantly while waiting for their breakfast, feed dogs. Having re-awakened to the blissful notes of dogs agitating each other, I popped downstairs to give Erin her chemo, then dressed for my pre-daylight walk around the lake with Willie. I even had a chuckle when the piranha-like pack of wee white doggies from across the lake (all three of them look like oddly pristine cleaning accoutrements) chased Willie the Brave, out of their yard and down the road. Both of us survived. By 6:30 I had returned home and settled at the table with a cup of coffee and the local paper. Five minutes into a six-minute newspaper (you know, the kind that you can’t train a puppy on), I read that Agent Cool Blue, the “plaque detecting rinse” Erin had talked me into after her dentist office visit a couple of weeks ago was recalling 4 million units of its product line.

“Interesting,” I thought to myself, “The container probably contains small parts that could choke a three-year old.”

Nope.

I read further and discovered that because the product doesn’t contain alcohol (a relatively good thing for most products geared to go in children’s mouths), it does not protect against the proliferation of certain micro-organisms. ALL units of the product that have ever been manufactured were recalled. I ran upstairs, revved up the computer, and visited the website the newspaper article had referred me to. This is what I read:

My child has been using this product. Should I be concerned?

• McNEIL-PPC, Inc. conducted a thorough assessment and concluded that the risk of illness in healthy individuals following use of this product is very low. Ha Ha, I thought. Erin’s safe. Then I read further. . . However, there could be a significant health risk to individuals with weakened or suppressed immune systems. To date, there have been no consumer adverse health events reported that are related to this issue. If you have further concerns, please consult your healthcare professional.

Ack! That’s not what I wanted to read. The “innocent” product I bought so that my child who has chemo-weakened teeth has a better chance to preserve her smile puts her at risk for bacterial infection.

So far, I haven’t gotten through on the consumer line to see how dire our predicament is. Erin’s blood counts were solidly low normal yesterday, so I’m not actually all that worried. It’s just that I’d rather not be worried at all.

I had intended to give you a full weekly report today, along with lovely pics. Be patient. I will fill in the details of the convergence of the peak of softball season, the coming finale of soccer, Davis’s birthday, Easter, and all the other Buenger details. The opportunity just hasn’t bubbled to the top yet.

Stable, Not Just a Place to Hold Horses

04/05/07

Our day yesterday was fragmented, grueling, and ultimately great. The radiologist declared the CT "stable" with all the January anomalies (that we had hoped were related to lung gunk and general bad health) resolved. The bone scan was negative for disease, and Erin's blood counts looked solid: BUN and hemoglobin returned to normal, white count and ANC remained a little low, but fine for someone on chemo, and the balance tested out just where they were supposed to. Erin had even grown a bit in height and put back on some of the pounds she lost over winter. She's now 4 foot three and a half inches, and 57 and a half pounds (Erin thinks it's quite important to include those "halfs").

Now I can rest easy for about a month or six weeks before I start looking in earnest for signs that things are not going well.

Davis caught a ride back home with us, and is refilling his metaphorical tanks before returning back to school for the final three weeks of mayhem, plus the torture of finals. When I get over the glow lit by the realization that Erin can continue doing what she's been doing and that our family doesn't have to stop, regroup, and make a new plan, I will post a livelier update.

Beer/Bike/Teeth/Ear Update

04/02/07

Here's a quickie.

Beer/Bike race--postponed until April 14. Rainy weather, complicated by a campus tragedy (a student overdosed and died) unrelated to the race.

Erin's teeth--no cavities. . .yet. Because of the harsh, high dose chemicals used to treat Erin and the radiation she had over her entire body, including her head, Erin's teeth are starting to deteriorate a bit. Her Number 14 and her Number 30 (I think those are both towards the back) have soft spots developing down in the crevasses. Her dentist, Sig Kendall, will try sealants as the first line of defense. We'll do that in a couple of weeks.

Erin's ears--still fluid-y. No infection in the left ear, milky look in the right ear. The ENT Andrew de Jongh was unwilling to call it pus. We're giving it three more weeks for the fluid to drain on its own, then he will recommend ear tubes. I'm not sure where I stand on that. One more surgery (even though, it's a mole hill compared to the mountains Erin has climbed before) is not high on my list, especially since the ears don't hurt and her overall health seems fine. Still, hosting serial infections in an immuno-compromised child is like playing with fire. Right now, the lake seems to be the deciding factor. If he could make her waterproof molds that she could swim in, I think I would give it the okay, if needed.