Tuesday, October 31, 2006

Reacon, Alcon, and Batcon


Happy Spook Day! I wish I could report on Erin's costume choice for tonight, but it's not that simple. First, I would have to explain to you the game that Erin, Nico, and Adam made up that is played either in her room, in the fort, in the climbing tree, or on the kayak in the lake. Then, I would have to tell you how each of them is from a different planet (Alconia, Reaconia, and Batconia) and each has a different pair of jobs: Nico is captain and hunter; Erin is the mapper and the herbalist; Adam is the navigator and the look out and maybe something else, too. Then, I'd have to figure out the purpose and roll of the myriad of shiny, colored pebbles scattered around on the floor that are clearly important to the game (I'm pretty sure they are not food or weapons. They may form some sort of mysterious map or coded instructions for mission completion. Or they may just be magic). Even if I could figure out the little stones, how could I explain the electric piano, and the mission-crucial role it plays?

So, imagine you are in my shoes this evening, walking door-to-door with three children begging for candy. Erin is wearing red shoes, red tights, a short, pleated skirt made out of aluminum foil, a red turtle neck, and a shiny silver cap bestrewn with jewels. She is carrying two bags: one to hold her ill-gained loot; the other stuffed with maps, herbs, and shiny stones. The other two will have on something completely different, but equally, uh, idiosyncratic.

Here's how the conversation goes:

Purveyor of Candy: "Look, Harold. What cute trick or treaters. What are you supposed to be?"

Erin: "I'm Reacon."

Nico: "I'm Alcon."

Adam: "I'm Batcon."

P of C: "Oh. . .are you from a tv show?"

Erin: "No."

P of C: "Oh, well I haven't seen that movie."

Erin: "We're not from a movie."

P of C: " Oh. what are you then?"

Mom (daringly dressed as a business professor, tries to clarify the situation): "These are characters from a game called Gateway Explorer."

P of C: "Ah, I get it. A video game."

The children (together): "No. It's not a video game."

P of C (with diminishing enthusiasm for the conversation) stares with a blank look on her face, hoping to eventually light it up with recognition: "A board game, then?"

Mom (jumps in, hoping to switch the light bulb on): "They invented this game, you see. They're from different planets. They have different jobs and wear different colors. They go on missions determined by the electric piano and the shiny glass pebbles kept in a treasure box . . ."

P of C gives out more candy to shut me up and quickly turns off the porch light. Maybe I've stumbled on a winning strategy.

Not to run the sartorial theme of this journal entry into the ground, but Erin and I have another problem that involves wardrobe choices: Chet Edwards invited Erin to the A&M/OU game next Saturday. His wife and two sons are flying in, and we will join him and his family at the game. So the big question: what do we wear? Red for the campaign (probably not, since that's what OU will be wearing)? Maroon for the home team (a likely choice, but one that will involve a shopping expedition)? Or green (the color that looks best on Erin)?

To have such high class problems! Can you believe that Chet would spend the last Saturday before election day with someone who had his vote from the start and someone who won't be able to vote for another nine years, instead of with a high rolling donor or someone still sitting on the fence? Wow!

In other news, those of you who laid down bets on Team Buenger with the local bookie last week can now collect. PharmaCare approved Erin's prescription for Celebrex (indefinitely BTW, so we don't have to repeat this process every month or even every year) for the normal copay (which happens to be $155/month less than they wanted us to pay originally). She took the first dose last night, and headed off for developmental soccer training. She didn't mention any side effects. However, when I asked her after practice whether her stomach bothered her enough to warrant a banana milkshake on the way home, she was sure that her tummy had been at least that grindy.

I will stop for now, with the thought that I will be getting back to the journal sooner rather than later with more Erin news and hopefully an update to the Davis Report (remember the French pronunciation). For now I have homeworks and projects waiting to be graded, exams coming in tomorrow, and a fresh pumpkin to carve as soon as I get home.

Tuesday, October 24, 2006

Bumping Along


Things are bumping along at the Buengers. Erin's big weekend left her exhausted Sunday night, and Monday morning brought complaints of ear, throat, eye, and back pain. I dismissed the back pain as soccer related, since we had good scans just last Thursday. The rest left me scratching my head--bacterial infection? virus? allergies? too much of a good time? We went ahead and started chemo (but not Celebrex, which is another story to follow in a couple of paragraphs). She had no fever and the other complaints were relatively niggling, so we sent her on to school. We stopped in at University Pediatrics after school. Her white blood count and ANC were lower than I would have liked but improved over last week. Jesse Parr looked her over, and we decided to forego antibiotics for the nonce, and see if Erin's little complaints improved or worsened over the next day or two.

Good call. We made it home, and I exercised The Wildman while Erin did her homework. Today Willie had only eaten about six mouthfuls of the bathroom cabinets, so I declared it a training victory. Erin felt better and better, so by the time we snacked, put the homework to bed, and ate a bite of supper, she was feeling pretty spry. We headed out the door. First, to stop by the Hilton to show our support for Chet at the candidate's forum, and second to hop over to Veteran's Park for soccer practice. By the end of the evening Erin was back on track and not mentioning any of the aches and pains from earlier in the day.

The official CT report came in over the fax this morning. I am, at some point, going to have to return to school for a degree in radiology so that I can actually understand more of the report than the currently understandable articles and conjunctions. The bottom line is Erin had another stable scan: "stable soft tissue density in the posterior mediastinum and retroperitoneum without evidence of progression of disease." That's fine with us.

Now, , ,on to the Celebrex. Apparently, our pharmaceutical drug insurance provider is under the impression that nine-year-olds do not need Celebrex, regardless of what their doctors may think. Therefore, we can either do without or pay ourselves. We thought of a third option, and that is for our doctor, nurse practitioner, and oncology nurse to triple team them until they realize that Erin is not seeking Celebrex as a recreational drug, and instead agree that she is a sick child who needs out-of-the-box thinking to maintain her health and quality of life. Are you placing any bets about who is going to win this one? My money is on Team Buenger.

This day last year, Erin was tied to an IV pole having topotecan and cyclophosphomide drip into her port, while her third-grade classmates took "Flat Erin" (a large photo of her) around to all the rides and attractions at the Renaissance Festival. She was mightily disappointed to miss the (only) third grade field trip, but she made the decision herself and stood by it, based on her desire to get chemo over with, rather than having to go in-patient over the weekend. Today, to make up for last year, her buddies Jesse, Nico, and Adam talked their mothers into letting them ditch school so they could take "not flat" Erin to the Renaissance Festival. What a treat!

Friday, October 20, 2006

Celebrating with Celebrex


Final Bone Scan Report: normal
Preliminary CT Scan Report: stable
Blood Counts: White Count and ANC: lowish; Hemoglobin and platelets: normal
Buenger Report: happy, relieved

What's next (medically): On to Round 11 of oral etoposide, starting on Monday. We are also adding 400 mg of Celebrex daily (200 mg at breakfast and 200 mg at dinner) to the mix. No, Erin has not developed arthritis. Unexpectedly, celecoxib, the active ingredient in Celebrex, appears to have a couple of anti-tumor effects: 1) it reduces the level of a particular protein (cyclin D1) that is important for cell replication (thus, if there is less cyclin D1, tumor cells can't "grow and prosper" as well); and 2) it blocks the signal tumor cells send calling for more blood vessels to form--without new blood vessels to feed them, the tumors die. We don't expect this to be a miracle cure, but we do figure if we keep punching away at Erin's tumor cells on a daily basis and in different ways we'll have a better shot at making it behave (or perhaps leave the party altogether because we've been so inhospitable).

What's next (life): Erin is going to help her buddy Adam celebrate his 7th birthday this afternoon! The rest of the weekend looks very soccery. The RHCP (Red Hot Chili Peppers) take the field tomorrow morning to try and keep their perfect record in tact. Then on Sunday, Erin and several of her teammates have been invited to take part in a couple of "friendlies," matches that are not part of a league, tournament, or organized competition. Two teams of girls from the Woodlands are coming over to play. Afterwards, most of the girls will cheer on the Aggies in their match against Missouri. Then a select few (actually, Erin and Samantha--whose mother also plays with me) will get to top off the weekend by watching my match.

Next week, the fourth graders at Mary Branch will perform their musical program--songs with a decidedly eerie theme. Erin will also continue practicing for the UIL Oral Reading contest coming up in mid-November, and if the rain holds off and the pasture dries a bit, she will get back into the groove of horseback riding. Add in church choir and homework, and her life is more than complete.

One Final Note: I am adding a new link on the left frame, The Davis Report (remember to use the French pronunciation for "Report"--ra-'por) to track the latest happenings of College Man!

Tuesday, October 17, 2006

Erin is Fine


I know. I was starting to worry you. Don't worry. Erin is fine.

I doubt I have time to cover all the Erin happenings of the last twelve days (yes, thanks for the e-mails reminding me how long it had been. You know how we Buengers are in math). They include two shut out soccer matches (5-0, and 8-0, I think) for the Red Hot Chilis, a day trip to Sea World (think seven hour car trip, plus the Big Shamu) with Abby and Ayesha, and a crack-up gem of a project on Karankawa Indians, who apparently neglected a couple of levels in their food pyramid and lived in disposable houses.

We also watched the Chet Edwards/Van Taylor debate with about fifty other Chet supporters in a local eating and drinking establishment. Erin kept everyone supplied with plenty of Chet stickers and a great deal of native exuberance, as well. She kept yelling at the big screen tv, "If Mr. Taylor can't say something nice, he shouldn't say anything at all," much to the howling delight of the rest of the audience.

Erin did spend a good portion of the last several days on the potty with loose bowels. Most of you probably don't know, but neuroblastoma tumors secrete a protein that loosens the bowels. I spent a good deal of the weekend wishing digestive problems on myself, thinking that if it were a virus, it would be contagious. By Sunday evening, I was out of luck. . .output as firm as ever. So, when Elaine called to talk about the Karankawa project and told me that Nico had diarrhea, I practically did a celebration dance in the kitchen. I know, it is quite rude to cheer when a close friend's child gets sick, but I think she forgave me. When Erin ran into the nurse at school yesterday, she confirmed that there was a stomach bug going around Mary Branch with just the symptoms Erin had.

The only other news we've had is that Davis was home for a few days for fall break. Erin and I had been working a large jigsaw puzzle in his room for the past few weeks. When he arrived, he immediately got with the program so that we could finally finish it. We made so much progress on Thursday night, in fact, that we could clearly tell that about 40 pieces were missing. I know what you are thinking. . .check Willie's stomach contents, but we had been vigilant about protecting the pieces and didn't think that was the answer. We searched under furniture and eventually decided we had bought a defective product. Sunday Davis took it apart, so that we could start a different one. He also decided he wanted to take a puzzle to school as a stress-reducing(?) pastime.

The list of things that Davis wanted to take back with him was assorted (to say the least):

  • 25 pounds of rice (supposedly to snack on)
  • coat hangers (does he really have that many clothes, and is he really hanging them up rather than tossing them on the floor?)
  • jump rope
  • measuring cup (is he learning to mix drinks?)
  • two chess sets (anyone for doubles?)
  • winter clothes (in Houston?)
  • folding table and chair
  • tennis racket
  • a one-gallon plastic jug (He says his coffee mug doesn't hold enough. I say enough what?)

This is almost more than he took with him the first time. He also decided to dig the old puzzle keeper out of the attic so that he could close the puzzle away when he and his buddies got rowdy. Lo and behold, when he got it out and dusted it off, eureka, he found the the missing pieces from the now dismantled puzzle.

I can't say we did much with Davis home. I cooked all the requested favorites. We stayed up together and watch the Daily Show and Colbert Report. He and Moo did a fish rescue behind the dam on yesterday when it rained so much. I put off updating Erin's website.

Walter drove him back to Houston today. Tomorrow, Erin and Nico and I will follow that identical route, in preparation for Thursday's scans day. I promise I will update sooner rather than later.

One other bit of personal privilege: Happy Birthday Baby Sister!

Thursday, October 5, 2006

Dining By Candlelight


I don't know what you did Tuesday during the power outage that affected nearly 100,000 households in the Brazos Valley, but I wish all of you could have had as much fun as Erin did. She started off in blissful ignorance of the whole rush hour fiasco caused by the black/brown out, practicing soccer with her team, the Red Hot Chili Peppers. The girls knocked it around for an hour, never noticing the bumper-to-bumper traffic crawling past on two adjacent streets. Our own drive home, made lengthy by too many cars and not enough functioning traffic lights, just gave us the chance to sing longer and louder to Erin's favorite CDs (current favorites--Paul Simon's "Graceland" and Jerry Jeff Walker's "Viva Luckenbach"). Her first order of business at home was to inventory and organize the various alternative light sources--flashlights, lanterns, and candles--just in case.

"Just in case what?" I asked.

"Just in case the power never comes back on."

"Okay," I say, but I think to myself, "Lighting for the evening is going to be the least of our worries if the power never comes back on, but oh well."

She was categorizing and ordering everything so thoroughly and carefully that I thought she might be a bit scared of the approaching evening of darkness. I suggested that we walk the dogs together in the fading light which is always a hoot, given the wildly disparate pace each dog chooses.

Impromptu Matching Quiz:

1. Luke a. bolt
2. Uma b. mosey
3. Willie c. waddle

If you guessed 1-b; 2-c; 3-a, you win the prize.

As it turns out, Erin was just putting off starting her homework, so that when she finally got to it, she could work in the dark by lantern-light--"just like the old days." Then came dinner preparation. She had definite ideas about what a dinner without power would be like, from the menu to the table setting. We set up the flashlight and arranged the candles strategically around the kitchen and began chopping and assembling ingredients. We ended up with a lovely continental type cold supper with various crackers and specialty breads, cheeses, fruit, peanut butter, and of course, chocolate as the finisher. She set the table so that the most charming candles lit our dinner and the rest were relegated around the great room to create a mood. After dinner we hung out in the living room chatting and scratching the dogs. Disappointedly, the light came back on before bedtime and stayed on. She ended the evening with the wish that we could do this again some time. Why? She'd never had a candle lit dinner before, and it was the best way to eat.

At that moment, I wondered how many people had spent the evening raging (or worrying) in the dark about canceled or interrupted plans or if anyone appreciated the chance to slow down and enjoy a few of the littler things, like walking the dogs at dusk or eating snacks that were passing as supper in the flickering candle light. It's a theme that repeats in my head fairly often: does anyone really appreciate the chance to do simple, maybe mundane things with their children, their family, their loved ones? This gift I give to you, freely, hoping that you don't need to experience the trying uncertainty our family lives with before you appreciate it.

Speaking of trying uncertainty, Tuesday morning brought that to our house in spades. Erin woke up with an acute backache, at or near "the spot." Tylenol with breakfast, a pillow for school, more Tylenol after lunch, some more before soccer. Did I mention that she has scans in two weeks and that my tension and worry would be ramping up even in the absence of evidence that things were not going well? Of course, I racked my brains trying to remember if she had been tackled by a defensive end, involved in a car wreck, or thrown off of a bucking bronco on Monday. Sadly, all I could think of was that she had had a busy weekend and a taxing soccer practice the night before. Not really enough to establish cause and effect. I also knew someone at her table at school had gotten sick over the weekend, but the classmate's symptoms (sore throat and fever) did not really match up.

Tuesday evening's "dinner in the dark" helped me de-escalate, and by Wednesday, all of Erin's complaints had stopped and I had re-grouped. I can't promise I won't worry again in the next two weeks, or that I am confident that the results will be the ones we're hoping for. But. . .for now. . .I am satisfied that everything is okay.