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.

Spring has Sprung

03/29/07

The full blush of spring has overtaken the Brazos Valley, making me feel lazy and romantic. I don't want to rush away from the Dutch irises in the front bed to hunker down at the office with a set of reports or blue book exams. I don't want to stop long enough at my computer to update Erin's website when I could just as easily wander out and see what message the heart-shaped leaves unfurling shyly on the red bud tree have for me.


Solution: Do the update while I'm teaching.

My students are beaving away at their midterm exam, so the computer has beckoned me over for a short interlude. The benefit? I don't accidentally fall asleep while proctoring the test, and readers don't get stuck with last week's news.

Not that I have that much to offer. Erin is handling the added schedule pressure of playing soccer and softball simultaneously. Her first softball game was pretty even, and the girls looked like they had a passing familiarity with a ball and glove. The second game was a slaughter, with Erin's team barely able to bat around the order before the game ended. Personally, Erin is on much more solid ground with fundamentals of soccer than softball. She played second base last game and understood the concept of covering the bag on throw downs (which she did pretty well). The problem arose on potential doubles, where she so intrepidly kept her eye on the runner rounding first that she would have been beaned from behind had any of her teammates had the sense or ability to throw the ball in from the outfield. She did make one of the only put outs for her team (besides strike outs) when she fielded a grounder and successfully made the throw. It was one of the few highlights on a very short reel.

I wish I could tell you that Erin's ears had improved mightily from the round of Omnicef. She'll finish the course tomorrow, and she still feels like she has a banana in her ear. Hopefully, the ENT doctor will get a handle on it during our visit in the morning. In the meantime, we'll stop by the dentist after school. Maybe she has done such a lousy job brushing that the plaque build up has overflowed into her ear canal.

Davis got the news that his time trials last Saturday were fast enough to put him on Will Rice's Beer/Bike team. He told me he did the "Willie smile" for thirty minutes after his race and for thirty more minutes after he was named to the team. Here is a picture of the "Willie smile."

It's Davis's imitation of Willie where he draws his lips tightly back so his teeth show and then pastes on a big smile. They both look simultaneously ecstatic and ferocious when they do it.

Keep us all in your prayers over the next week. Erin, Nico, and I will leave for Houston Tuesday evening for an all-day scanfest on Wednesday. We sure would like to see stable or improved pictures this time. Davis has Maundy Thursdsay and Good Friday off from school, so we will drag him back with us so the Easter bunny will know where to find him. For my part, I'm going to try and be as brave as Elizabeth Edwards, who doesn't want cancer to keep her from doing anything this week that she could or would have done last week. The Buenger's won't be prisoners to cancer either.

Anniversary Retrospective--Oops, a long one

03/21/07

Ear update: Yesterday's trip to the pediatrician turned up normal blood counts in every category, including a hemoglobin of 12.0 (slipping back into the normal category for the first time since Thanksgiving). One ear had cleared of infection, but the other merited a fourth round of antibiotics. What's up on the hit parade? Omnicef. I made an appointment with the ENT for next week to see what is going on.

How do you celebrate anniversaries? A night out on the town? A quiet dinner at home? A gathering of your forty closest friends? A daring trip? A silent soliloquy to yourself in your journal?

That question leads to the next. Why do we mark them at all? Perhaps we want to celebrate how long we’ve been at something or to note that it’s been so long we can’t possibly be at it for that much longer. Sometimes we use them to reflect on what is past and to hope for the future. Sometimes we just marvel at the unlikelihood of it all.

I can remember going steady for the first time as a young girl. I think we marked anniversaries by the week (this was before we knew what the “anni-“ in anniversary actually meant). No one expected those early boy/girl things to last long, so if you were going to celebrate, you had to do it by the week. Later, it was a Special Occasion if we actually reached A Year together. When I married Walter (1984), I changed my perspective. At first I was sort of bummed that our anniversary number from dating zeroed out and we had to start the count over. But from Day One we had an agreement. We weren’t counting on staying married forever. We contracted for sixty-four years. After that we gave each other permission to re-evaluate and either sign up for more or withdraw from the contract. We made jokes after a year. . .”And they said it wouldn’t last.” Last October we hit 22 years. Still a decade before we reach halfway, but so far, so good. I’m withholding judgment about whether to re-enlist until we get a lot closer to 64 (like 63 and a half).

This week anniversary mean something different. We are celebrating three rather different anniversaries in the Buenger household: one year since Luke overdid on a beautiful spring day like yesterday and found himself the unwilling butt of many I’ve-fallen-and-I-can’t-get-up jokes, one year since Willie chose our house as his personal teething ring, and two years since Erin relapsed with neuroblastoma.

We still have Luke. He is no longer spry. In fact, he’s beyond pokey. But, he eats heartily every morning, can “hold it” until he gets outside, and will still hobble up the stairs for a treat and a pet. Luke is on the way to fifteen years old, ancient for a yellow lab. When we think back over the last year (which included high dollar, synthetic drugs and doggie water aerobics), we celebrate how long we’ve enjoyed this pup and note how few grains he has left in his hourglass.

Willie’s one-year anniversary as a member of the household means so much more. Given the longevity of the Buenger pets, I can only wonder what (if anything) he will leave behind. I mean, we only have so much stuff. For an incomplete (yet growing) list of items eaten by Willie click here. Place your bets on whether we will run out of “things” before Willie needs dentures, and join us in marveling at the unlikelihood of it all.

Some of you know how joyous (and unlikely) celebrating two-year post relapse for neuroblastoma is. I guarantee it deserves more than a mention in the website update. It deserves a party, with floaty balloons and confetti. When you reach such a milestone, you should drink deep of the spirit of life all around you. Instead, Erin will walk the same path she does every day. She will wake and make the most of what she encounters, whether it is a spelling test, a chance to get together with Nico and company, a cozy book, or a rousing game of soccer.

I will watch her as she glides through her day and count the milestones: another class picture to add to the scrapbook, another pair of new Easter shoes (For a while my children marveled at how the Easter bunny knew their size and what would perfectly match their Easter outfit. Later they just assumed the bunny cobbled shoes on the side). I collect the moments and hold them like a talisman against a future I don’t want and probably can’t prevent. I sneak peaks at her when she won’t notice. She works in front of her mirror to get her hair up into tiny, toddler-sized pigtails. She faces the pitcher, no longer batting off a tee, smacks a grounder, and almost beats it out. I wonder what the next year will bring. None of us know, but we all want our full measure.

Now on to more lighthearted fare. Thanks to Michelle Braden for alerting me to the Starlight, Starbright Children’s Foundation contest. If you click on this link:

http://www.colgate.com/app/Colgate/US/Corp/CommunityPrograms/Starlight/HomePage/South.cvsp

you can vote for Texas Children’s Hospital to win a FunCenter. The five hospitals with the most votes will receive a FunCenter mobile entertainment system for patients use. This takes less than a minute, maybe less than ten seconds.

Another opportunity for you to help comes from George Stuart who plays with me in the Carter Creek Brass. He has traveled to Odessa (Ukraine, not Texas) on mission trips over the last year and has given special attention to an orphanage there. He hopes to go back before the end of the school year and would like to take musical instruments with him for the boys and girls (read more here). If you have a leftover band instrument sitting around your house, give him a call (979.229.4954) or an e-mail (gstuart2001@ hotmail.com) and help him out. Consider it part of your spring cleaning.

In the meantime, Erin is thriving. She finished her ranch project (see the map below) and got it to school Monday. The gang celebrated PPR Day on Monday with a full crew (perfect attendance). We have not heard if the affiliated chapter at Rice had an equally good turn out. Maybe not. Yesterday Erin rode, and Napoleon did much better than he had lately. I think they switched back to the bit they had used earlier and he responded much more eagerly to her commands.


The only question mark continues to be her ears. She does not have ear pain, but they remain congested, with muffling. She completed the course of amoxicillin last Friday (3/16), which is, as you may recall, the third sequential course of antibiotics (along with cefzil and Z-pack) for her ears since the last week of January. She reports that her ears seem somewhat improved, in that she can clear them momentarily by holding her nose while blowing out, but they do not remain open. Related (possibly?) to that is a weird thing I saw when I was watching the Weather Channel night before last. An ad for Singulair came on, and as part of its disclaimers noted the mild side effects of taking it, INCLUDING EAR INFECTIONS. We’ll run this past Jesse Parr when we are in for blood counts this afternoon.

Thanks for reading all the way to the end. As you metaphorically celebrate Erin’s extra measure with us today, remember those children (and their families) whose time ran out too soon. We are thinking especially about Vince Lopez, who we met doing chemo for relapsed Ewing’s Sarcoma when Erin was doing outpatient chemo summer before last. He died night before last, too late to receive the honorary degree from Blinn College that had been given him by the faculty and administrators. His family will receive it for him at his memorial tomorrow. You can also browse Angel Warriors to learn the stories of children no longer in the earthly fight against neuroblastoma.

Home Schooled

03/14/07

Spring Break. What a relief. We go at it hammer and tong during the semester, so we really look forward to the unplanned, unscheduled days that always arrive just in the nick of time. Walter took Davis back to Rice Sunday morning. We miss him, but . . .we know he is incredibly happy and doing well academically and socially. That is what parents hope for.

Last night we had the most remarkable meal available in the Brazos Valley. Meatloaf might not sound like much to you, but if you consider that the entire meal (click on the menu shown below to enlarge it) was prepared and served by Erin, Nico, and Adam, you might change your mind. We had four appetizers: chips and salsa, trail mix, boats (snap peas stuffed with sesame sticks), and torpizzas (tortillas with pizza sauce, pepperonis, cheese, and olives), lettuce salad with mandarin oranges, croutons, sunflower seeds, and blackberry walnut dressing, a main course of meatloaf, French green beans, and baked potatoes. The dessert included brownies with a masterpiece sauce made from melted ice cream mixed with fresh kiwis, strawberries, and blueberries. They even cleaned up as they went, loading and unloading the dishwasher no less than three times over the course of the day as they prepared the various parts of the meal.
I am getting a little ahead of myself. Despite the fact that we have had five-and-a-half inches of rain since the weekend, we have really enjoyed ourselves. Erin played in a soccer scrimmage Sunday afternoon at left forward, right midfield, and center stopper. She looked better on the field than she has since last fall. Her eat-chocolate-at-every-opportunity weight-gain diet seems to be working. You can see her "bulging" muscles straining her UnderArmor as she trains Willie after the game. (I'm not sure he needs any more training on how to grab things in his mouth, but what do I know?)


Nico spent the night Sunday night, so they could take an early start on the PPR explorations they had planned. After breakfast, they geared up and headed behind the dam for several hours of animal tracking, plant identification, and general enjoyment of nature's laboratory. Next Monday is the real PPR Day (19th of every month, in case you have forgotten), and everyone will be over, so they took the chance to get things in order and take notice of new discoveries to share with the gang. Willie helped. As a prelude to the occasion, Nico composed this, "The PPR National Anthem." Feel free to sing along (you can see the words more clearly by clicking the image)!


After roving and tromping, they took a break for lunch and some errands (including making the first shopping run for the planned dinner party). When we made it back to the house, they took advantage of Annabelle's willingness to play with them for a while, devising a game that involved shaking a blanket like a parachute, while doing various maneuvers over and under it. One of the stages of the game involved doing a move while not making noise or laughing. This, apparently, was very difficult to accomplish.

The other days of the break have been equally loaded and equally fun. Sudoku puzzles, shared reading time, watching episodes of West Wing, a little gardening, a dash of house keeping. If I had only know that teaching science (PPR fun), music, P.E., the culinary arts, and history (last week's trip to SA), reading, and math (sudoku) was so easy, I might have been home schooling all along. NOT! I value free play way too much to buckle down to a curriculum. I'm just glad that there are dedicated educators willing to do it for me! Thank you teachers. You can have her back next week.

Health update: I almost forgot that some of you stop by to read the latest on the medical front. Erin's local clinic visit went just fine last week, except that Dr. Parr discovered that Erin had still not shaken the double ear infection that she has taken both a Z-Pack and a second round of a different (why can't I remember right now?) antibiotics for. That means we signed up for a third round: Amoxicillin this time, with the hope that it will do the trick. We had a message on the answering machine when we returned from San Antonio that Erin's blood urea nitrogen (you remember the infamous BUN) had crept up again. We will keep an eye on that in early April, when Erin returns to Houston for clinic AND quarterly scans.

Free Willie

03/10/07

What would you do? Let's pretend you have a dog who eats your house when he is indoors and who aggravates your neighbors to the point of distraction when he is left out. You are leaving town for four days, having just liberated him from the hoosegow at a cost of 100 smackeroos (fees plus generous donations to keep the shelter staff from putting him on the adoption/euthanasia list next time he backslides). You have found an angel to feed your various animals in your absence. What do you tell her about the now-free Willie? Mum's the word.

Actually, the trip worked out just fine. Willie only ate a little woodwork around the kitchen bar area and Davis's second flip flop. He was not arrested, detained, incarcerated, nor did he become a ward of the state in our absence. In addition, the Buengers all hung our together without fussing or even disagreeing much. We all considered it a major victory. San Antonio turned out better than I expected. It is still tourista extreme, but we managed to do our own thing a good amount of the time. Translation: no Sea World; no Fiesta Texas; no Splashtown; limited evening meals on the Riverwalk; only a brief trip by the Alamo (and fie upon the myriad of people who started conversations with Erin by asking her what she was going to do in San Antonio? Go to Sea World?).

We substituted plenty of walking; a lot of visiting with friends; a really bang-up reception hosted by the Texas A&M University Press and the A&M History Department (where Erin and Davis comported themselves like pros and kept the conversational ball rolling right along. Thanks Mary Lenn!); a trip to the Witte Museum; and a substantial dip into the "other" missions of San Antone. NOTE: This first image is not the Alamo. It is the Mission Concepcion. You can tell it's not the Alamo because it has two bell towers flanking the sides. The original Alamo was flat all the way across, unlike the second image below which most people are familiar with (that elegant hump in the middle was added about fifty years after the Battle of the Alamo).


As a side note, look carefully at the two photos above. Now guess which one is the object of a $30 million dollar fundraising effort by the Daughters of the Republic of Texas? If you guessed Mission Concepcion, you would be wrong. If you recognized that $30 million would fully fund all 90 planned NCI trials for pediatric cancer for 2007, you would be correct. Unfortunately, The Alamo sells; cancer trials and lesser-known missions do not.

Erin, Davis, and I actually spent quite a bit of time exploring the city, while Walter did the hard work of attending banquets and meetings. Here are some of the highlights:

Erin discovered a remnant of a tree with seating for two. Rosie wore her sun visor to protect her sensitive skin, but Erin caught the rays, au naturale.





She also fell in love with a family of ducks and duckling that lived not far from our hotel. There were five ducklings. Not enough really to adopt the monikers of the ducklings in Make Way for Ducklings: Jack, Kack, Lack, Mack, Nack, Ouck, Pack, and Quack. But we did it anyway. We just took the first five names and hoped the mother duck would sit again before the summer. This one is Lack. I couldn't tell that he (she?) lacked anything, except the will to hold still.






Perhaps the highlight of the trip for Erin was discovering a long tropical-like leaf floating by. With the help of some handy Duct-tape (not provided by Davis, who found himself in the nation's 10th largest city without his usual stash of DT. Instead, our dear old friend Larry Hill, who is recognized by all who know him as a Fine Figure of a Man, saved the day with a roll of regular colored duct tape that he found rolling around behind the seat of his pick up). With said duct tape, Erin transformed the leaf into a long canoe, suitable for transporting ear-plug people across the hot tub (there was a big pool, but the shade from the super tall building across the street kept the pool temperatures much too cool to swim, or boat , comfortably. Hence the hot tub.)


Luckily for us, we don't have to get back to the grind anytime soon. We have a week of spring break to dispose of before we have to go back to work. . .well all of us except Davis. Davis returns to Rice tomorrow to finish of the last seven weeks of the semester. I have all the confidence in the world that he will acquit himself in fine style. (Check out the Report soon, I will have details of several near arrests and, of course, details about the upcoming Beer/Bike Race.)

Mixed Emotions

03/07/07

I'm leaving soon to see if I can bust Willie out of jail. That is, if he is there. He went off missing yesterday after school and didn't come home last night. Erin thinks he might have gone down to the PPR ravine, wondered into the cow herd, and got trampled to death. Davis is sure that some dog lover found him, recognized his obvious value, and claimed him for his own. Walter is sure he is dead, flattened by a passing semi or shot by an angry homeowner who didn't want his bunnies agitated. I'm fairly certain he was smote down by a vengeful god, peeved by the Destruction of the Word. But, we heard through the grapevine that a neighbor thought her husband might have taken an animal fitting Willie's description to the Animal Shelter last night because they were afraid he might try to cross a busy road. So, on the off chance I am doing good by protecting the flimsy shelter cages from the destructo dog, I am WITH MIXED EMOTIONS going to see if he is there.

I have to do it now, because we leave for a four-day family vacation to San Antonio as soon as I get home. Sorry to have to keep you in suspense, but I'll let you know if I find him in the local equivalent to the Folsum County Prison when I return on Saturday.

Froth and Light

02/28/07

I couldn't believe Erin's blood count numbers yesterday.

WBC--7300 (solidly normal)
ANC--5500 (solidly normal)
Hemoglobin--10.6 (still lagging from the hard winter, but just fine)
Platelets--368,000 (solidly normal, perhaps even high normal)

These numbers have held for two weeks in a row (despite the fact that we are in the middle of week three of three in the 24th round of chemo since relapse in March of 2005). When these fantastic numbers showed up last week, I discounted them because I thought the infection she had and the Z-Pack she was on probably puffed them up a bit. BUT I have to tell you I was thrilled to see them again this week. It speaks to her overall health and reinforces the notion that she has put the winter behind her, much as Richard III did: "Now is the winter of our discontent Made glorious summer by this sun of York."

So happy am I about Erin's current health that I'm not even complaining about how the pace has picked up around the joint. Somehow two soccer practices plus a game each week morphed into two soccer practices, a game, and two scrimmages this week (this does not include my game and practice). Add this to the already scheduled horseback riding and the newly inaugurated piano lessons, and you get quite a marathon. Erin also took special care on a school project about Patricia Roberts Harris this week. I didn't know much about Secretary Harris, but I think Erin captured her essence in this short assignment. Here is what she wrote (I have left it in the exact form that Erin turned it in, punctuation errors and all. I think it is hilarious that her research turned up a reference to the incident with Bill Proxmire, but no description of it, so she just stuck it in because it sounded interesting and daring.):

The person I am writing about is Patricia Roberts Harris, an African American born on May 31, 1924 in Mattoun, Illinois. She lived in many interesting places including Chicago, Washington D.C., and Luxembourg. She dies on March 23, 1985 in Washington D.C. at the age of 60.

Harris had a lot of first for African American women including being the first African American woman in the cabinet (she was a Democrat!), the first lady African American chosen dean of a law school, and the first African American ambassador. In 1946 she was a program director for the Young Women Christian Association. She served as the United States secretary of health and services under president Jimmy Carter, and in that position had a very famous exchange with Senator William Proxmire. She also earned a partnership in a very large law firm.

I wish I could have met Patricia Roberts Harris because she was such a accomplished and good woman. Also, if I had met her I would have asked her what it felt like to be the first at something. What would you have asked?



As long as we are on Froth and Light, I'll show you one of the masterpieces Erin produced this week. I don't know about other children, but both of mine need downtime as much as they need activity in their lives. For Davis and Erin, downtime means holing up in their rooms and listening to audio books, while working on arts and crafts. I know, this doesn't sound relaxing to everybody, but it is to them. It also explains why I have a large investment in craft sticks, why empty paper towel tubes rain down on my head whenever I open the cabinet above the stove, and why pipe cleaners and glitter glue are permanent items on my shopping list. Besides this beautiful two-dimensional expression, Erin has also been building a castle. It has a long way to go, but she's not worried, there are a lot of audio books in the world. She told me I could take a picture and post it when she was done.





--

I didn't get this posted on Thursday (like many of you were hoping), so here is an add on. Erin and her soccer playing buddies played in and won a scrimmage against an older team last night, 3-1. We then loaded a couple of then into the van and headed over to the Aggie Soccer Complex, where the Houston Dynamos were playing against Puntarenas F.C. of Costa Rico. This was the second of a two game series for advancement to the semifinals of the CONCACAF Championship tournament. Since Houston lost the first game 1-0, they had to win last night by two or more to advance. We had great seats (five rows from the field, right near the midfield line) and could see everything: players heads cracking together when they went up to head the ball, sweat flying, and jersey grabbing. The girls also got an eyeful and an earful from the passionate fans that paraded around, beating drums and sounding horns. The picture at the left are the tamer ones. The rest looked like they had hitchhiked over from Mardi Gras in a tank truck hauling orange paint. Their language was as colorful as their outerwear, and I was momentarily grateful I had not yet started on Erin's bilingual education. The game also provide Erin an opportunity to work on pumping her weight back up to pre-Thanksgiving levels. What did you have for dinner last night? Erin had a hot dog, a huge tub of popcorn, a bag of skittles, cotton candy, and whatever Sam and Cat shared with her from their stash. I think she covered all of the main food groups, except chocolate. Junk food, just one more dimension of the cultural experience offered by el juego bonita.

What's up next for the intrepid Buenger clan? I'll leave in a couple of hours to fetch Davis home for his spring break (and to gather new bits for the DavRep). Uma, "the Martel of Dogs," is road tripping with me at Davis's request. I think he wants to prove to his buddies that such an obviously cat-like dog actually exists. Erin is walking home from school with Nico and company for a rousing Monopoly tournament this afternoon. Tomorrow, the Red Hot Chili Peppers face off against one of their big rivals. Erin has arranged for a little outdoor tromping around time tomorrow afternoon if the weather holds. Because she doesn't have to go to clinic in Houston this month, we decided to ditch school anyway and head to San Antonio at the end of next week. This gives Davis a little Spring Break vacation, and let's travel us a family to the Texas State Historical Association meeting with Walter.

I told you this was going to be froth and light. Not a serious thought has entered my mind in the writing of this entry. I had considered an entry organized around the theme, "Can Dogs Go to Hell?" in the aftermath of finding that Willie had eaten my Bible last week, but decided that weighty theological questions were out of place in an entry meant as dessert.

Ryan's Parable

02/27/07

I read the following parable on Ryan Malarkey's website and felt it spoke directly to the conversation I started with you last week. I will leave this up for today, then update you about Erin tomorrow (I promise).

A mouse looked through the crack in the wall to see the farmer and his wife open a package.

"What food might this contain?" The mouse wondered - he was devastated to discover it was a mousetrap.

Retreating to the farmyard, the mouse proclaimed the warning, "There is a mousetrap in the house! There is a mousetrap in the house!"

The chicken clucked and scratched, raised her head and said, "Mr.Mouse, I can tell this is a grave concern to you, but it is of no consequence to me. I cannot be bothered by it."

The mouse turned to the pig and told him, "There is a mousetrap in the house! There is a mousetrap in the house!"

The pig sympathized, but said, I am so very sorry, Mr.Mouse, but there is nothing I can do about it but pray. Be assured you are in my prayers."

The mouse turned to the cow and said, "There is a mousetrap in the house! There is a mousetrap in the house!"

The cow said, "Wow, Mr. Mouse. I'm sorry for you, but it's no skin off my nose."

So, the mouse returned to the house, head down and dejected, to face the farmer's mousetrap alone.

That very night a sound was heard throughout the house -- like the sound of a mousetrap catching its prey.

The farmer's wife rushed to see what was caught. In the darkness, she did not see it was a venomous snake whose tail the trap had caught.

The snake bit the farmer's wife. The farmer rushed her to the hospital, and she returned home with a fever.

Everyone knows you treat a fever with fresh chicken soup, so the farmer took his hatchet to the farmyard for the soup's main ingredient.

But his wife's sickness continued, so friends and neighbors came to sit with her around the clock.

To feed them, the farmer butchered the pig.

The farmer's wife did not get well; she died.

So many people came for her funeral, the farmer had the cow slaughtered to provide enough meat for all of them.

The mouse looked upon it all from his crack in the wall with great sadness.

So, the next time you hear someone is facing a problem and think it doesn't concern you, remember-- when one of us is threatened, we are all at risk.

We are all involved in this journey called life. We must keep an eye out for one another and make an extra effort to encourage one another.

CANCER IS EVERYONE"S PROBLEM! So, if you haven't sent your letters to your congressmen to stop the cuts in Cancer Research you can do so now. Go to the Curesearch site and pass the link on to friends as well! Thanks.

http://www.curesearch.org/news_and_media/news_article.aspx?id=4470

Write Congress, Right Now

02/20/07

(I added the Senators from the Senate Appropriations Health Subcommittee to the list of key Representatives to target, if you are checking back)

Looking for something frothy and light from this entry? Check again next week. What you are about to read is deadly serious.

I don't know if you saw the video clip that aired last week on the ABC News about the President's budget request as it affects funding for clinical trials for cancer. There are (at least) two points to think about when viewing the clip:

1. The heads of the Children's Oncology Group will have to decide which clinical trials get funded and which don't, which means deciding which children get treated with the latest available options and which don't. At the proposed funding level 20 of the 90 scheduled trials will be canceled (22%).

2. Children like Erin with rarer childhood cancers will be one of the groups most affected by these cuts.

This stuff makes me mad.

Fifty years ago only one or two out of every ten children diagnosed with childhood cancer survived. Some very hard-working and compassionate doctors pulled together to build cooperation and trust in the clinical trial system. Today about three-quarters of all children with cancer are treated under clinical trials (this compares to about 2 percent--not a typo--two percent of adults that take advantage of trials). Because of the rapid expansion of knowledge about treatment afforded by the use of clinical trials, the survival rate across the board for pediatric cancers has risen to 78%. This is good news and good science.

It is also necessary. Pharmaceutical companies are not that interested in developing new drugs to treat pediatric cancers because the market is too small (12,500 new diagnoses each year). Without the motive for high profits, there is market failure. When markets fail, governments have the obligation to step in and provide incentives. That's why it makes no sense to me to cut funding for trials. AND I'm not talking about billions of dollars. I'm not even talking about hundreds of millions of dollars.

Taking $9 million dollars from the budget for pediatric clinical trials is not trimming "waste, fraud, and abuse," it is taking 400 children further from their dream of surviving the nightmare of having cancer.

Don't get me wrong. I'm glad we have the drug that Erin has taken for the past fifteen months that has kept her stable. That drug was developed (for adults) in the early 1970s and has been cleared for use by the FDA for over thirty years. What I'd really like is progress in clinical trials of some of the agents that are not cytotoxic (poisons). As it is, each month that goes by, Walter and I have to weigh the positives of Erin's current situation with the real possibility that taking even low-doses of cytotoxins for an extended period will result in secondary cancers and other health issues. Progress can not happen fast enough for children like Erin. That is why it breaks my heart when clinical trials are delayed or canceled.

On the advice of our Congressman, Chet Edwards, who has been one of Erin's staunchest friends, we are looking for people around the country to help get the message out. Writing your Senators and Representatives is good, BUT IT WOULD BE EVEN BETTER if you lived in one of the districts we are targeting. These districts are represented by individuals on the Appropriations Subcommittee that decides funding for the National Cancer Institute. Check out the list below and see if you live in one of these districts or if you know someone who does (I have listed the biggest cities I could think of in each district, so if you are geographically challenged you might can still figure it out).

If you feel moved by what I have written Click Here. This will take you to a place that has the email address of every member of Congress, by zip code. You can do this RIGHT NOW.

Wisconsin-7th  (Wausau and Ashland look like the biggest cities)
New York-25th (Syracuse)
New York-18th (New Rochelle, White Plains, and Yonkers)
Connecticut-3rd (New Haven, Middletown, and Naugatuck)
Illinois-2nd (Chicago Heights, Park Forest, and Calumet City)
Rhode Island-1st (Providence, Bristol, and Newport)
California-34th (Los Angeles County, I'm not sure how much of LA,
looks like east and south east)
California-9th (Berkley and Oakland)
New Mexico-3rd (Santa Fe, Gallup, and Clovis)
California-15th (Santa Clara)
Minnesota-4th (St. Paul)
Ohio-17th (Youngstown and Kent)
Ohio-16th (Canton and Medina)
Pennsylvania-5th (State College and Lewiston)
Florida-15th (Kissimmee and Vero Beach)
Idaho-2nd (east part of Boise, Twin Falls, and Idaho Falls)
Montana-1st (whole state)

The following Senators serve on the Senate Appropriations Health subcommittee:

Tom Harkin (Chairman) (IA)
Daniel Inouye (HI)
Herb Kohl (WI)
Patty Murray (WA)
Mary Landrieu (LA)
Richard Durbin (IL)
Jack Reed (RI)
Frank Lautenberg (NJ)
Arlen Specter (PA)
Thad Cochran (MS)
Judd Gregg (NH)
Larry Craig (ID)
Kay Bailey-Hutchison (TX)
Ted Stevens (AK)
Richard Shelby (AL)
Note:  KBH has not signed on to the Conquer Childhood Cancer Act yet,
and needs to hear from all us Texans.

If you don't know what to write, you can go to CureSearch.org for more details. I also found this article by Liddy Shriver to be useful if you want even more statistical ammo.

Okay. So I can't resist a little froth and light. Yesterday was PPR Day! Erin and her buddies pulled on their PPR shirts and hit the wilderness behind the dam. I understand there was a problem again with the rule following in the Houston Affiliated Group of the PPR. More punishments were meted out.