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.