I'm Overwhelmed

November 9, 2007

I just checked Erin's Giving Tree, and Erin Fans have already decorated with 194 ornaments. This amazes and humbles me! Thank you so much. Lunch for Life is such an awesome way to support research. It is run by families of children with neuroblastoma (and you thought I did a lot with my little cache of spare time). Here's where your lunch money goes:

• ALL funds raised through "Lunch for Life®" go directly to support neuroblastoma research and initiatives.
• Funds are dispersed through a grant review process and funding decisions are based on the direction of the CNCF’s Medical Advisory Board. (This board is an independent and organizationally diverse group of neuroblastoma specialists and researchers committed to hastening a cure.)
• Lunch for Life® is entirely about removing this horrible disease from the face of this earth. It is about speeding up the process.
• Lunch for Life® is about saving children's lives.

It is simple. We are an organized group of families with children, grandchildren, friends, and relatives afflicted by cancer. Our only goal is to erradicate this disease. Our children may or may not benefit from this research. A cure may not come in time for many of our little warriors. But we can keep other families from walking in our shoes and we can keep other children from entering into the world of neuroblastoma. It is for these reasons that we are committed to finding the cure. We have no desire to fund expensive marketing campaigns. We are committed to finding a cure. It is about the children.

I feel privileged to count you all among Erin's special friends and supporters. If you feel like you can, please give up lunch for Erin. Do it as a way to kick back and celebrate Veteran's Day. Or wait a couple of weeks and make it part of your Thanksgiving ritual. Do it for Advent or the Festival of Lights or Kwanzaa or as your personal Ramadan. Pick a day. Have a big breakfast. Skip lunch. Send the money to Lunch for Life. Think about doing that once a month. Ask your friends, family members, neighbors, and co-workers to join you. If you can't bear the thought of missing a meal, eat and donate anyway.

Thanks.

Thanks Texas, Thanks Ted

November 7, 2007

Texans passed Proposition 15 (58-42%) yesterday thus authorizing up to $3 billion in state general revenue bonds to fund cancer research, prevention, early detection and control programs. Thank you voters! Let the trials begin.

After a nine month wait, Ted Kennedy has scheduled S.911 for consideration in Executive Session of the Health, Education, Labor, & Pensions Committee for one week from today (November 14). Thanks Ted! If you haven't written your follow-up letter to Senator Kay Bailey Hutchinson requesting her support on this legislation, do it now. Tell her the Conquer Childhood Cancer train is about to leave without her.

Erin Needs Your Help

November 5, 2007

We spend a lot of time forgetting that Erin has cancer. We focus on her great grades. We relish watching her make a quick tackle, followed by a splendid turn on the ball to throw the attacker off and start the offense for her team. We revel in the charm of her smile and the radiance that overflows from her eyes. We grin at her wit. I spent a long twenty minutes with her yesterday exploring what college courses she should take to prepare herself to serve as our nation's president, and another long spell staring at a mother spider who had just hatched a host of spider babes.

All these moments help fade the fact that she's ten and been staring cancer in the face more than half her life. . .the fact that relapsed neuroblastoma has no cure (yet).

If you are a Texans and a registered voter, you have the opportunity to help Erin, possibly directly, and certainly indirectly, by voting YES for Proposition 15.

Proposition 15 is a constitutional amendment to establish the Cancer Prevention and Research Institute of Texas to:

• Conduct research to prevent or cure cancer
• Support existing cancer research efforts in Texas
• Implement the Texas Cancer Plan, a statewide blueprint for cancer prevention and control

If passed, Prop 15 will authorize up to $3 billion in state general revenue bonds to fund cancer research, prevention, early detection and control programs.

In 2003 the director of the National Cancer Institute stated that we could eliminate cancer suffering and death by 2015. Since that time the Bush administration has cut the NCI budget three consecutive years making the goal unlikely to be reached by that time. The funding level now is less than $5 billion for all cancer research. The amount allocated to children's cancer is less than 5% of that. All of cancer research funding is equivalent to what is spent in Iraq in just a few days and the equivalent amount spent on pediatric cancer research is spent in Iraq in minutes.

If the nation does not view cancer research as a priority, Texans have the opportunity to step into the breach. Did you know that Texas has more children with cancer than Canada does? Can we get some budgeting priorities right? Please vote and encourage others to do so as well.

Even if you don't live in Texas, you can help. Our regular holiday message is GIVE UP YOUR LUNCH FOR ERIN.

Children's Neuroblastoma Cancer Foundation has launched this year's Lunch for Life. Once again, we are getting into the holiday spirit by asking folks to give up their lunch to help find and fund a cure for neuroblastoma.

Here’s how it works: Each child has his or her own virtual giving tree, and your donations will decorate those trees with ornaments and (ultimately) presents. Every donation you make on Erin's behalf has three effects: 1) her tree receives one ornament for every $5 you donate; 2) every donation generates a Giving Code that gets Erin bonus ornaments if you pass it on to a friend to use; and 3) each ornament creates one entry for that child into our Disney World giveaway. For example, if I give up lunch all week ($5/day) and donate $25 to Erin's tree, she gets 5 ornaments on her tree and 5 contest entries. I also get a Giving Code to pass along. (PLEASE NOTE: Erin's Giving Tree Code is 24730) When a tree is full (500 ornaments), those ornaments transform into a present underneath that tree, and the decoration process begins all over again.

I just visited the link and it took less than a minute to give up my lunch! If you're skeptical, spend some time on the Lunch for Life website. ALL FUNDS raised through Lunch for Life go directly to support neuroblastoma research and initiatives. Erin might not benefit from the research, and it might not save her life, but we hope it will. We want to wipe neuroblastoma off of the face of the earth!

One thing you will notice if you have visited Lunch for Life before, the web page has a new look. More importantly, there are new ways to get involved: in your neighborhood and at work. If you have ever thought about passing it forward, this would be the place to start.

One final word on Erin.

I just received the final blood lab report from Erin's work up last week. Nothing in the CBC was quite as good as last month:

WBC 3,300
ANC 1,700
HGB 11.3
PLT 245,000

but the chemistries were all normal. We also measured quantitative immunoglobulins to see if her body has the ability to mount an immune response if faced with viral or bacterial infection. No real surprise that she measured lower than normal (IGg-511 mg/dL when the reference range is 690-1560 for her age and size). Walter and I are investigating how to get her an infusion (IVIG) that would boost her immune system. In the meantime, don't cough on her, smear your boogers on her, or offer her bons bons that you have already licked. In fact, I think you should get into the habit, when someone sneezes, of saying "Bless you. Sanitize." like the children in Erin's fifth grade class do.

Fluency

November 2, 2007

Education researchers have discovered a new correlate to high performance on the TAKS. For you non-Texans TAKS stands for the Texas Assessment of Knowledge and Skills. Public school students in grades 3 through 11 take subject matter tests to demonstrate proficiency in various subject areas. The TAKS is the model for our country's No Child's Left Behind. And what I have never understood is why we would care about a Child's Left Behind and not their Right Behind. I say, it should be Both Behinds or No Behinds, not one or the other.

Butt, I digress.

I learned about the research applicable to the Reading TAKS when I recently had a conversation with the learning specialist at Erin's school. Apparently, at each grade level, reading aloud at a particular speed is an uncanny predictor of success on the reading TAKS. Therefore, fluency has become a crucial part of reading preparation at Erin's school. Each student receives a grade-level appropriate passage on Monday. They practice at home reading the passage out loud, and on Friday, they read as much of the passage to their teacher as they can in exactly one minute. The plan is to continue doing this each week through February, so that all the students can become fluent readers. The first Friday, when Erin had finished her minute and recorded her result, she had read 263 words per minute. This was three words more than the chart she was supposed to record her results on could accommodate. (If you want to measure yourself against Erin, take a look at the October 29th entry below. Turn on your stopwatch and read for a minute out loud. If you made it to the word "lack" as in "lack of hand washing facilities" you matched Erin's first effort.)

The next week, she practiced a little more (actually a considerable amount more. Every evening, after dinner when Walter and I sat down to catch up on the events of the day, Erin sat in front of the microwave, time set to twenty minutes and read and re-read the passage at top speed.). At the end of the week, she sipped through 304 words in a minute. That would be the equivalent of reading this entry from the beginning through the word "little" in the first sentence of this paragraph in sixty seconds. That may not seem so difficult to you when you are reading silently, but do it out loud. Listen to yourself. If you could really talk that fast you would have a career as an auctioneer (and not many other opportunities).

So, when I was visiting with the learning specialist about another matter, I asked about fluency. I was pretty sure that I had stumbled upon the unintended consequences of a well-meaning change in the curriculum. What the teachers (and researchers) expected was that having children read out loud would improve their silent reading, giving them a better chance to finish reading passages on standardized tests with enough time to answer the questions posed. What they got was a goal-oriented child, who already reads waaaaaay beyond her grade level, who is also a motor mouth. If you have ever heard Beaker, from the Muppets, talk, you can imagine what Erin sounded like reading out loud at the speed of sound.

When Erin got home this afternoon, she told me she was done with fluency. Her teacher told her she didn't have to do it any more. She was happy about it, but promised that she would start doing it again, if anyone in the fifth grade reached 305 WPM. Whose child is she?

This whole episode cracked me up.

On to Halloween. . .

For years, Erin has wanted matching mother/daughter outfits. This is not really my thing. I'm a business school professor. I wear suits and sports coats. It's my uniform. There are NOT a proliferation of suits and sports coats available for little girls. Erin wears young girl stuff: capris, skorts, you know the gig. Finally, this fall, she made me a deal. She told me she wanted to dress up for Halloween as a Congresswoman, would I help her get a costume, preferably a suit? Plus, she said, if I would buy her a suit, she would wear it for her Christmas outfit, her Easter outfit, and as her dress-up clothes on Sundays. I cratered.



I can actually picture her as my representative or Senator in a couple of decades. Can you? The lapel pins she is wearing is the gold ribbon for support of childhood cancer! She had a grand time, first hanging with her buds, Jesse, the Egyptian pharaoh, Ian, the bumblebee, Nico, the Ketchup bottle, Adam the skeleton, and Shelby, the lady bug.



We met up with the Mystic '97 soccer girls and got more trick or treating in. I don't think Erin actually understands that Halloween is to dramatize your greatest fear (thus a lot of dead guys trick or treating) or embody something beautiful or funny. Erin thinks you Halloween is a dress rehearsal for your later life. She looks ready to serve.


One other thing before I sign off for the night (can you tell that Walter is out of town. . .academic trip to a conference in Richmond, Virginia?), thanks to you the Conquer Childhood Cancer Act of 2007 will receive its Senate markup next week, if all goes according to plan. As of tonight there are 44 Senators and 160 representatives already committed to the bill's passage. If it makes it through committee in both houses (this is where it found its untimely death last year), it will go for a full vote, then to the President for a signature. If it makes it that far, I will call on you again, because this bill is only an authorization bill. If it passes, the Appropriations Committees will have to find funds to make it happen, and that won't be easy.

Check back again soon. Lunch for Life is launching again soon, and as always. I'd like you to give up your lunch for Erin.

Crab Soccer--UGH!

October 29, 2007

When I was in junior high, I loved crab soccer. Crab soccer requires an over-sized, over-inflated ball, the hands and feet of all team members on the floor, and their bellies pointed to the ceiling. If you could kick like a Rockette, scramble backwards, forwards, and sideways, or at least if you had enough sense of humor to realize how ridiculous everyone looked, you could really appreciate the game. Now, I hate crab soccer.

No I wasn't recently picked last for the local team.
No, crab soccer hasn't shown up filling air time on ESPN2, scheduled right after adult dodgeball.
No, I don't think crab soccer takes Americans away from "real" soccer.

I hate crab soccer because as soon as the weather changes, and it becomes too chilly to hold P.E. outside, the P.E. coaches at Erin's school bring all the children in to the multi-purpose room and start crab soccer tournaments.

Why, you may ask, is that a problem?

Imagine what happens when forty 10 and 11 years olds wipe their noses (and what ever else you want to imagine) on their palms then place their palms on the P.E. room floor for a rousing game of crab soccer. That's one class of crab soccer players. Now, triple that number to 120 because each class plays three times a week. Now, multiply 120 times fifteen (the number of unique P.E. classes in the school) and spread the yuk that gets wiped to include the detritus on the hands of 5, 6, 7, 8, and 9 year olds, too. Add in the lack of hand washing facilities in the P.E. room, and you can see two things clearly: why Erin has been sick twice in the last eight days and why I hate crab soccer.

It is also why I had a rant with (on?) the P.E. coach first thing this morning. Which P.E. coach you may ask? The one whom I met with before school started and in the second week of school about this very issue. The one whom Walter visited with at Open House in late-September about this very issue. The one for whom I bought an industrial-sized bottle of hand sanitizer to use to combat this very problem, with instructions just to mention when he needed more. The one who thanked me graciously and told me he and his assistant coaches really appreciated using the hand sanitizer to keep from getting sick. The one that kept the hand sanitizer hidden from the children.

As a result, last week after rousing games of crab soccer, Erin had a mild brush with a junky virus that left her tired and achy, but not too sick. This weekend, she met squarely with the disease that doesn't let you stray too far from the bathroom. Luckily, it didn't hit until we stopped for lunch on the drive home from the soccer game Saturday, but the last thing you really want to hear when you still have an hour and a half drive time remaining is for your child to announce that she has green diarrhea.

Besides maintaining an umbilical cord distance from the bathroom for the remainder of the weekend, Erin hasn't fared too badly. We did put all activities scheduled for the weekend on hold, so we wouldn't pass on this precious gift. That gave us ample time to catch up on our to-do list around the house and to put the finishing touches on our spooky jack-of-lanterns. This first one is obviously some kind of apparition from the spiritual world.


The second, if you can't easily tell, is the spittin' image of Willie, down to the cocked ear and insanely agile tongue.


The final shot features Erin with her two new friends and creations. This must be what Dr. Frankenstein felt like:

Plumbing the Depths of a Ten-Year-Old

October 22, 2007

Erin stayed home from school today. . .almost sick. She had vague symptoms: a little fatigue, slight body and joint aches, almost a headache. Last year's dance marathon with Mr. Virus and Mr. Infection led me to err on the side of caution. Furthermore, since Walter actually was sick on Friday and Saturday, I figured that the full blossom of symptoms would appear as soon as I left for work. By the time I returned from work in the middle of the afternoon, I discovered I was wrong. True, Erin was no better, but certainly she was no worse either.

She was, however, ready for some mom time. Which brings us to Halloween decorations. I can't really explain why we didn't get the decorations up over the (gorgeous) weekend. But here we were, less than two week, heck, less than ten days until the big holiday, and not a window or wall of our house had anything orange or black stuck to it. So I dragged them out of the attic and found the scotch tape. You see, our Halloween decorations are not the kind that come from the discount store, require electricity, and take up the front yard. When Davis was about two and a half, we started making construction paper monsters and other Halloween-y things and sticking them on the walls and windows. When they started looking a little raggedy from being taped up and pulled down year after year, I took the lot of them to the teacher's office supply store and had them all laminated. Each year, when Erin or Davis made a new creature at school, I added it to the collection. Now we look eerie, floor to ceiling, wall to wall. Here's a view of Erin's window (note bene: every window in the house looks like this, but with a different theme. The theme here is obviously home decorating tips by Peter, Pumpkin Eater.):

Erin also brought home the project she created for social studies last six weeks, where she had to create a continent. Might I introduce the eighth continent: Erionalista (no little ego here).

As long as I am exploring the talents and creations of Erin Buenger, you might as well hear how her thoughts unfolded this week.

Conversation 1 (between Erin and mom):

Erin: "Mom, how old was Davis when he got his own e-mail address?"

You can see where this is going can't you? Erin doesn't have her own e-mail address, and apparently is the only ten-year-old in America who us so dispossessed and cruelly punished.

Mom: "I think he got one when he got to Rice last fall."

Erin (not the answer she wanted to hear): "Oh, that's right back when Davis was a kid, kid's e-mail wasn't invented yet."

Conversation 2 (between Erin and Nico):

(Overheard from the backseat of the car on the way home from children's bells and choir last week. The two of them were discussing another choir member who always acts dramatically when she misses a note.)

Erin: "I don't know why she has to fall down and moan when she misses a note."

Nico: "Yeah, I know what you mean. I don't know why either."

Erin: "Look at me. I've hit so many wrong notes this year, that if you stacked them all up they would reach to Houston."

Conversation 3 (at the breakfast table):

Erin: "Do you remember in the Winnie-the-Pooh story when he eats too much at Rabbit's house and then gets stuck in the door as he's leaving?"

Mom: "Yes, what about it?"

Erin: "So, didn't he get stuck leaving, with his head and arms on the outside and his feet on the inside?"

Mom: "That's the way I remember it."

Erin: "And he had to stay there a long time until he thinned out?"

Mom: "Yes."

Erin: "Well if he was stuck there all that time, where did he go to the bathroom?"

Mom: "I don't think stuffed animals actually go to the bathroom."

Erin: "Then why do they call him Pooh?"

Remember, I'm not skilled enough to make this stuff up.

Why Don't I Trust My Own Eyes?

October 16, 2007

I have watched Erin since July, when she had an elevated TSH (thyroid-stimulating hormone) level in one of her blood labs. TSH isn't something we test very often, so we really didn't have much to compare it to. A consistently high TSH would indicate hypothyroidism (something that would need daily medication, so Erin could grow properly and have enough energy to do the things she wanted to do).

At the time I gave her doctor a "What?-Are-You-Crazy" look, because she knows as well as we all do, that Erin hits the ground running every single day and never shows signs of hypothyroidism (fatigue, sleepiness, weight gain, decreased concentration, etc.). That's when I learned of the condition called subclinical hypothyroidism. Subclinical means you show no clinical signs of disease. It happens when the thyroid may be damaged (How would a thyroid get damaged? Oh, use your imagination. . .perhaps by radiation to the throat, which happens when you have radiation to your total body), but it compensates for the damage by working overtime, putting even more stress on the endocrine system. People with subclinical hypothyroidism can solve most of their problems by taking medicine, but once they start, they usually have to take it for the rest of their lives.

I so didn't want Erin to have to add another set of daily meds to her kit. Frankly, I was prepared to keep her off the meds, unless the doctor made a very compelling case that she needed them. I mean, what's the point of having a beautiful, not over-stressed thyroid if you think you won't have ample opportunity to use it later in life? Her oncologist wasn't terribly worried last summer, but she did suggest scheduling an appointment with an endocrinologist when we came in for scans, just to have a specialist's view point.

So since July, I have watched Erin to see if I could see signs of a struggling thyroid, and since October 2 (after the endocrinology appointment), I've been waiting for the test results that would confirm a thyroid problem.

They came today:

T4,Free(Direct)                   1.12 ng/dL           0.82 - 1.58

TSH                               4.415 uIU/mL         0.360 - 5.800

THYROXINE (T4)                      6.9 ug/dL            4.5 - 12.0

ANTITHYROGLOBULIN Ab            <20>

What a relief!  I thought of the punch line to the old joke:  "Are you going to believe me, or them lying eyes of yours?

I think I'll stick to my lying eyes.

Big Week

October 12, 2007

QUICK UPDATE (TWO ITEMS):

1. Congressman Chet Edwards with his whole family on speaker phone just called and spent fifteen minutes congratulating Erin on her student council election results. What a guy!
2. Visit this website www.dontalmostgive.org and view the public service announcements linked there. The message really hit home for me. I know what the road to H-E-double toothpicks is paved with. I read or hear something and INTEND to follow up, do a good deed, write a letter, make a donation. Then the immediacy of my life takes over and I almost follow up, almost do a good deed, almost write a letter, almost make a donation. If this happens to you, too, let me give you a nudge. Here is a link to Han's webpage, where Han's mother has written an bang-up letter to our Senator. Take a look. Then, don't almost write--write.
   

As a reward for your activism this week, I'll give you a break from my haranguing and share the highlights of Erin's week. If I do, you have to promise not to take your eye off the bigger picture--inundating Senator Hutchison with calls, faxes, letters, and e-mails pushing for her support of the Conquer Childhood Cancer Act of 2007 (see entries on October 8 and September 10 for KBH contact information, description of the bill, and pediatric cancer facts).

The fifth grade trip to Camp Allen exceeded expectations all around: no mosquitoes, mild weather (well, honestly, it was hot with a breeze, but not oppressive), excellent food (at camp? you may ask, but I understand Camp Allen has a well-deserved reputation for serving tasty meals), a crackling camp evening fire with humor geared to 10 year olds, and a copious amounts of free time. When was the last time a school field trip you attended could claim all of those things?


Erin also made a successful bid for student council at her school. Her speech was too funny--long on earnestness and honesty, short on zip, and definitely lacking in sound bites. I don't know exactly what she ended up saying, but it went something like this:

"I wish I could promise that if you elect me to the student council I will get us recess all day, field trips to Disney World, and better food in the cafeteria, but the student council can't do those things. If you elect me, I will listen to you, like Chet Edwards listened to me went I went to Washington, D.C. and work to make our school a better place."

Despite not overpromising anything, she won in a run-off and was exceedingly pleased. Erin also brought home another stellar report card with week, stayed on top of her homework, scored twice during soccer practice last night, and is improving on her Number Sense practice. In addition, she rode horses, sang, rang bells, and played the piano. Mainly, she has just smiled her way through the week. If she can, you should, too.

Now, get back to work, literally ( I have students to teach in about an hour and you have some task or chore at your home or job that you need to attend to), but also in the bidness of cancer advocacy. For motivation, here is a picture of our trip to DC in June when Senator John Cornyn (in the suit at the left) got on board the Conquer Childhood Cancer Act. I sure would like to add a matching one with KBH!


This is a group of Texans who lobbied with us in Washington. Erin didn't want to wear the t-shirt everyone else was wearing because she thought "an outfit would make a better impression." The young man on the far right (with the knee brace) has Ewing's sarcoma. The rest of the group were mainly parents, siblings, and friends of children who had died from cancer and a couple of doctors and nurses who work with pediatric cancer patients. This is what the t-shirts say,


I sentiment we all can agree with.

Calling All Texas Exes, Former Cheerleaders, Junior Leaguers, and Citizens of the Lone Star State

October 8, 2007

ADD ON THOUGHTS ABOUT KBH: When I have written Senator Hutchison the "canned" response I have received back indicates that she supports cancer research (but the support for legislation she lists only includes adult cancers) and that she would consider the Conquer Childhood Cancer Act if it ever comes up for a vote.

That's not good enough. Childhood cancer is not adult cancer. It has different characteristics, causes, and treatments. It needs its own funding and research. Even if everything that worked for adults also worked for children, children with cancer do not have fifteen or twenty years to wait for the promising drugs to go through three sets of adult trials, receive approval for adults, then go back into three more sets of pediatric trials, before they are finally approved for children.

Do not be put off by Senator Hutchison's nice, but ultimately hollow, words. We need a Senator willing to step up and fight for our children now.

Advocacy Update:

Folks of an age will remember Schoolhouse Rock and I'm Just a Bill. (Take a trip down memory lane by clicking on this link or this one that takes you to You Tube so you can watch the original music video:)

I'm just a bill.
Yes, I'm only a bill.
And I'm sitting here on Capitol Hill.
Well, it's a long, long journey
To the capital city.
It's a long, long wait
While I'm sitting in committee,
But I know I'll be a law some day
At least I hope and pray that I will
But today I am still just a bill.

That ditty, which tells of the long, drawn out process of how a bill becomes a law attempts to capture the circuitous, sometimes torturous route, but doesn't do the process half the justice it deserves. Case in point: since the Buengers went to Washington to lobby for the Conquer Childhood Cancer Act of 2007 back in June, it looks like not much has happened. The bill is still sitting in the same committees and subcommittees where they landed in March. . .BUT. . .

A lot has happened. Since then, as a result of massive and widespread lobbying by people like you and me, 150 Representatives and 41 Senators have signed on as co-sponsors (you may notice that 41 is awfully close to the 51-person majority the bill would need to successfully pass a floor vote).

What I understand will happen next (and I strongly believe that this will happen this month), is that Senator Ted Kennedy who chairs the committee where the bill (S.911) is sitting will ask for a Mark Up. The committee will then report the bill to the floor, and when it moves up in the schedule, the full Senate will vote on it. I also believe that once the Senate takes up the bill, the House Commerce and Energy Committee (H.R. 1553) will do so as well, following a very similar process.

If you have even a passing connection to one of the Title Categories above (Texas Ex, cheerleader, Junior Leaguer, Citizen of the Lone Start State), I need your help today. My heart is breaking because the senior Senator from the state of Texas, Senator Kay Bailey Hutchison has not signed on to the bill and will not say why, nor will she make suggestions that would make the bill more palatable to her. Given her special status in those Title Categories I thought that perhaps her peers (this is you!) might make an attempt to convince her that the time has come for her to get on board! Write her. Call her. Fax her.

Senator Kay Bailey Hutchison (R- TX)

DC phone: 202-224-5922
DC fax: 202-224-0776
Link to E-mail: http://hutchison.senate.gov/contact.html

It has been hard for childhood cancer to get the notice it deserves. Yet the years of life lost from childhood cancers are way up there, exceeded only by the two most common adult cancers.

Neuroblastoma, like many pediatric cancers, arises sporadically. It can't be predicted or prevented. As one parent summed it up: It's simply unexplainable." The cruel hand of fate regularly reaches down and taps families on the shoulder from all walks of life: It has visited the families of bankers and builders, farmers and financial traders, doctors and deliverymen, teachers and lawyers, and so many others. There is so much left to learn and so many lives to save. Unfortunately, pharmaceutical companies don't see much chance for profit with children, and most private fund raising for cancer (think American Cancer Society, Lance Armstrong Foundation, or even the Susan Komen Breast Cancer Foundation) overlook children almost entirely.

If you want more fodder for a letter, you can write me and I'll tell you more, or you can check the September 10th entry below for some handy facts, or visit the CureSearch website. The important thing is DON"T WAIT. Let's give her a chance to sign up as a co-sponsor before the committee takes it up.

Besides the advocacy bit, the Buengers are taking life at their usual pace. Erin hit Bryan High Homecoming on Friday night with "the other" Aaron, and apparently had a blast staying up past her parent's bedtime.

Saturday brought another tight loss (1-0) on the pitch, but we are all confident that if we continue to do things right, the victories will start adding up. Saturday night the soccer team descended upon the innocent home of one of her teammates (Sydney Jeter) for a slumberless birthday party. Erin was groggy and complaining when I picked her up early for Sunday school, but we had to get their since the children's choir was singing the anthem for World Communion Sunday. Tomorrow is the fifth grade classes' all day field trip to Camp Allen (I have gotten sucked into serving as a half-day chaperone. . .I'll tell you about the mosquitofest later).

In between these activities, Erin has busily created a large pile of campaign posters and paraphernalia for her big run for Student Council. Since almost everyone in her class is running (each class selects one representative), she figures if she can get three or four votes she'll have a plurality. She has also been working on castle building!

Olympic Gold

October 3, 2007

If the Olympic Committee offered an event that required stamina and endurance, patience, cheerfulness, scrupulous attention to detail, and the ability to walk miles carrying bags laden with puzzles, stuffed animals, homework packets, medical records, gatorade bottles, and general detritus, I would have medaled yesterday. And Olympic bling hanging around my neck wouldn't have felt better than the phone call from Erin's doctor (as I sat, unmoving, in the HOV lane on the way out of town), telling me that Erin was still stable (clear bone scan, stable CT scan) and that we could continue with the low-dose treatment plan that has given Erin such great quality of life.

For those of you who want the medical details:

Erin's blood numbers

ANC 2300
HGB 12.9
PLT 277,000, all normal.

Chemistries (including BUN and creatinine) all normal.

Liver panel all normal, save the AST, which was 2 points higher than normal, but which has been about double normal but trending downward for the past several draws. This means that cyclophosphamide isn't irritating her system and causing as much inflammation as etoposide did.

For those of you who want the play-by-play:

What Else Went Well:

• I had cunningly called last Friday and put my insurance co-pay and deductible on my credit card, so I wouldn't have delays checking in.
• Erin sucked her oral contrast down for her CT scan quickly and efficiently. We made up time and the CT scan happened as scheduled.
  
• Dr. Heidi Russell worked us in between our bone scan prep and our bone scan (about three hours earlier than our scheduled appointment) and already had the official CT report showing stable results.
• Sam and Erin entertained each other all day, churning between television, cards, computers, books, hand-held games, and chit chat.
• The gift shop, once again, proved well-stocked. I am waiting for the day that Erin goes in and can't find a single thing that she doesn't already have.
  

What Went Wrong

• Even though I had cunningly called ahead of time twice so that we could make the tight schedule between IV placement and CT prep, the IV placer was late, putting us half an hour behind schedule from the get go.
• The CT techs can't figure out why the IV contrast burns Erin so badly that she cries every time it is injected. It's so hard to ask her to lie still on the table, when she and I both know that she's about to be tortured.
• A new (and vigilant) nuclear medicine tech (and presumably a new radiologist) insisted on taking several extra series of bone scan shots of Erin's shins, knees, hands, forearms, and elbows, asking me things like "Has Erin ever broken bones?" (no), "Does she have scoliosis?" (no), "Has Erin sustained a trauma or blow lately?" (no). Erin has never had bone disease, so I never really worry about the bone scan. When he re-did her legs, I thought, "Oh, that's just some deep bruise from soccer." When he re-did her hands (twice), I thought, "Can't he see that she has an IV stuck in the back of her hand that would show the tracer brightly?" When he asked me about her back, I told him about her divot left over from surgery three years ago. I believed everything I said, but I thought having anomalies in the scans show up in all those places at once seemed unlikely. This caused me to obsess about potentially bad results for the next three hours.
• The endocrinologist couldn't tell us anything we didn't already know. She ordered more labs which I had anticipated. I had cunningly called ahead to ask about that possibility and had kept Erin's IV in place all day so that she wouldn't have to face another needle poke. Unfortunately, the lab refused to use the IV, scuttling my plan, and making Erin extremely angry.
• The extra labs, the extra flu shot opportunity, and the extra bone scans shots put us behind schedule getting out of town, but Erin and Sam still thought we could make it for most of soccer practice if I drove efficiently. Unfortunately, something stalled traffic on the 290 HOV lane leaving town, and it took 42 minutes to travel about four miles. After that, traffic eased, and we floated on down the highway--ultimately too late for soccer, but just in time for dinner and a beer night cap (for me, not Erin).
  

Merry Christmas!

September 30, 2007

To understand this update you have to have some background. Walter and I have taught an adult Sunday School class for over a decade. We mix Bible study with books on theology and a heavy dose of historical context. We are called the Loose Leaf Bible Study, because during one set of lessons many years ago we learned that early Christians kept their sacred writings (before the Bible was canonized and made "official") in something called a codex rather than in scrolls like the Jewish scriptures. Keeping sacred writings in a codex was sort of like keeping them in a binder. It allowed various house churches and communities of believers to add to or take away from their collection of writings more easily than cutting out the middle of a scroll, then taping it back together (quite difficult in the pre-3M era, when scotch tape was not yet invented). Anyway, rather than continuing as the Sunday school class that didn't have a cool name, we adopted the Loose-Leaf moniker because it described our rather flexible (some might say skeptical) approach to Bible study.

If you have a name like "Loose Leaf," you have to be prepared to take some good natured ribbing from time to time. Consider all the nouns that "loose" modifies. . .lips, change, women, and most frequently screw.

Anyway, a number of years ago, we all got so busy we didn't manage to get our annual Sunday school Christmas party scheduled before Christmas, so we all decided to wait until after Christmas when we had more time. More time didn't materialize until June. We decorated a tree, dressed in our seasonal garb, exchanged gifts, and really had a good time. We decided that summer was absolutely the best time for a Christmas party for a whole bunch of reasons (if you think about it, you can probably create a long list yourself). Since then, we have our turkey dinner and our conviviality on the upbeat, rather than in time with the rest of the world, and it works out great.

This year, we almost slipped up. Summer came and went, and somehow we had not managed to get together for Christmas. Dorothy and Paul Van Riper saved us by opening their home this evening for the extravaganza. We managed to slip last year's Christmas party in barely before the big pre-Christmas sales started locally. If we hadn't we would have had to have two parties next summer, and that would have been difficult to schedule.

Erin was the official party photographer. Here are a few of her shots:


































































So we shared the joy of the season and exchanged gifts (I am now the proud owner of paper copies of the past five years of The Chimes, our church newsletter). Since it no longer comes weekly, I think I have a bona fide collector's item (See me if you want to buy them. Soon. Before I recycle them). Walter scored an elegant ceramic sleigh, though I am skeptical he can fit on it during the next snow. Erin didn't catch on that the gifts were heavy on laughs and light on value, so she was thrilled when several party-goers palmed their white elephants off on her.

What will we do in the afterglow of the holiday? Erin and I have school tomorrow. I will then deliver her to piano lessons, while I make a quick run to the library. Shortly before 5:00 we'll pick up Samantha and head to Houston. Our schedule Tuesday?

7:00 Report to clinic for IV placement and blood labs
7:30 CT prep
9:30 CT scan
11:00 bone scan prep
noon clinic
1:00 bone scan
2:30 endocrinology clinic
3:15 clinic back up (if we don't get seen at noon)
6:00 soccer practice

I'll let you know when we have results.

I Dumped the Sea Monkeys on My Head

September 28, 2007

Here's the burning question. If your mother walked up to you in the hall of your home, and said, "I dumped the sea monkeys on my head" would you have her committed?

That happened to me moments ago, and I'm going to hold off signing my mom's commitment papers for now. If she were locked away, I would have no one to clean Erin's BioSphere aquarium. Erin can't really keep the gourami tank clean herself, because it would require her to touch fish gunk that could contain bacteria or fungus (a no no for an immuno-compromised girl). Touching fish gunk is not high on my list either, and you can't get Walter to touch fish gunk with a ten-foot pole. Moo (that's my mom) to the rescue. For Erin, she's willing to siphon the tank, scrub the rocks, wipe layers of brown yuk off the glass, recondition the water, and so on. It was not really her fault that while she was down on her hands and knees scouring, she knocked the other tank on the table over. That would be the tank where Erin was growing sea monkeys. That would be the tank that fell over onto her head. Rather than rushing home to wash out the sea monkeys, she calmly finished the job, rationalizing, no doubt, that high-protein sea monkeys might do wonders for her "do."

Will Erin miss the sea monkeys? Maybe, but given that she has begged for days for someone to clean Bill and Sue's tank--even leaving bold notes taped to the kitchen counter, the bathroom mirror, the piano bench, her pillow, and the sofa--pleading their case, I don't think she'll be that upset. I suspect she'll use it as an opportunity to make a new potion: Sea Monkey Creme Rinse.

ADDENDUM: When Erin came home from school, Moo ask me if I had told her what happened. I said no. Erin asked, "What happened to what?"

Moo: "The sea monkeys."

Erin looked and noticed they were gone: "Where are they?"

Moo: "In my hair."

Erin started laughing and fell on the floor: "Have you showered?"

Moo: "Not yet. Do you want them?"

Just Being Erin

September 25, 2007

Every weekday morning I take Erin to school, and every afternoon I pick her up. Doing so is a constant in my life. The mornings may vary a little. Sometimes I just drive through the traffic circle and drop her off. If she has something bulky to carry, like a project or weekly classroom snacks, I park and walk in with her. The afternoon duty never varies. I park. I walk in. I wait for Erin to finish socializing.

On Monday, as I walked across the parking lot, her principal David Ogden took a momentary break from directing traffic to say, "Erin is one of the most diplomatic children I have ever met."

Two thoughts crossed my mind simultaneously: 1. It's a joy to have children on each end of the diplomacy spectrum; and 2. Who did Erin insult so tactfully and graciously that the principal considers her diplomatic?

Apparently, earlier in the day, Erin's teacher had sent her to the office to retrieve some paper for the classroom printer. Mr. Ogden found some for her and sent her on the way with this admonition: "Mrs. K will need to pay $100 for the paper." Erin stopped in her tracks and lifted an eyebrow to Mr. Ogden, who assured her that he was joking, but that Erin should give Mrs. K his message anyway.

Later Mr. Ogden happened into Mrs. K's room on another mission, saw Erin, and asked her if she had given Mrs. K his message. Erin nodded, and Mr. Ogden wanted to know the response. Erin apparently attempted to save Mrs. K's bacon by saying, "Mrs. K said that she can't afford to pay at this time." Mr. Ogden glanced over at Mrs. K, who said, "What I said was 'TOO BAD'."

Little Miss Erin will soon be putting her unique spin on things to a broader audience. She will serve on the video announcement team at her school. What does this mean? Twice a week she will head to school early (what was Mrs. Freeze thinking when she thought that Erin could get to school before the last minute?) and either announce, run the camera, or do the music and special effects for the school-wide broadcast of daily announcements. I'm pretty sure this is exactly like what Katie Couric does everyday, so it could be her big break.

Not A Medical Update

September 21, 2007

Have you noticed that I haven't posted a health-watch update or any blood count numbers since the first week of school? I'm not derelict, only excused from clinic. I guess Erin's docs are so used to her having relapsed cancer that they don't want/need to keep close tabs on her. I think the instructions went something like this: We don't need to see her or have labs checked for the next month. If you think she's picked up a bug or something, you can have labs done if you want. Otherwise, bring her in for an office visit after you finish up with scans on October 2.

I don't know how I feel about that.

On the one hand, the free pass on check ups fits into Erin's schedule really well! On the other hand, it leaves me as the one on point. As Erin blithely sails through her daily life, I have to monitor sniffling and coughs: Is twice in an hour enough to cause her white blood count to trend downward? Should we go to the germ-a-rama (insert your favorite retail alternative here) today or stay home? Do I need to insist that her friends follow code red, code orange, or code yellow level sanitation procedures?

When her doctors required weekly counts, I could always extrapolate trends before I decided whether to take a risk or not. Now I just guess. So far, so good. But I'm thinking as the weather cools and the chance for real sickness increases, I won't have the same confidence in my prognostication.

Still, I'm pretty happy with the situation at this point. The longer Erin remains in treatment, and the closer she gets to puberty, the larger the chance that she will begin to balk at the hassles brought by her disease. Having that break right now seems blissful. Especially, in light of the pre-teen who has peeked out at me a couple of time lately.

So, sit back. Enjoy the website. There is no medical news. Barring accident or an illness that even I could recognize, there won't be medical news until after October 2. After that, there will be a whole boatload of medical news, including CT and bone scan reports, blood counts and chemistries, an endocrinology assessment, and of course, a pronouncement on Erin's general health and welfare. I guess until then, you will have to find your worry fodder elsewhere. Or do what the pros do, put your effort into generalized, unspecified worry.

What's So Funny?

September 18, 2007

Why do children loved to swim but hate to bathe? Why does reading become a much higher priority as bedtime approaches? Why does my van smell so bad after carrying little Mystics around? Why do I laugh so hard on the soccer field?

You'd laugh too if you had overheard the following conversation on the pitch this week. . .
















This is Elvis Takow. Elvis trains Erin's Mystic '97 soccer team. It is only one of his many talents. He is also a coach/trainer for the Texas A&M women's team (ranked #5 in the nation) and a Ph.D. student in the Rangeland, Ecology, and Management Department, specializing in computer mapping of forests and other naturally occurring resources.

What else do you need to know about Elvis? Those of you my age may remember Jan-Michael Vincent in his role of Nanu in Disney's The World's Greatest Athlete. For those who can't recall that charming performance (when I googled Jan-Michael Vincent, his mini-bio began "Virile, handsome and square-jawed youthful star. . ."), just picture a really fit thirty-year-old man who looks like he has tucked softballs in his calves. That's Elvis. Having Elvis back in our lives is deja vu. He trained Davis during his first year of competitive soccer, which is coincidentally, the year Erin started knocking a ball around on the sideline at Davis's games (fall 1998).

Despite what the lovely smile on his face (above) may lead you to believe, Elvis is a serious man, with a serious purpose: training young athletes to become good soccer players. The best adjective to describe his sessions? Not fun. Not exciting. Not jolly, merry, nor pleasant. Grueling comes to mind. Maybe harsh. Certainly no-nonsense.

At the end of practice last week, Elvis gathered the players around him and ask them if they had had fun. He didn't get much eye contact and certainly no agreement. He went on to say, "I know that sometimes practice is hard. I make you practice this way so that you can get better. You may not like me very much when I make you work so much. You may even hate me. When I was young, like you, many times I hated my coach. But you know what? Now I like him. Alot. I really appreciate that he made me work."

The girls, all gathered round him in a knot, didn't say anything.

I'm thinking, "He nailed it. At this point they really do hate him. Maybe they are considering that they could like him . . .some day."

I look around at the group. Erin is across from me. She's looking especially thoughtful, but also skeptical. She raises her hand. Elvis notices and calls on her. She say, "You mean, your coach is still alive?"

Elvis gropes to retain the gravity of the moment, but then cracks up. Suddenly Elvis, the other coach Lisa, and I are all falling over with laughter, and the girls don't really know what's so funny. Finally, Elvis said, "How old do you think I am?"

Erin looked a little sheepish, but explained, "I don't really know, but Davis is in college and you were his coach when he was a little kid, so I figured your coach must be getting on up there if he was alive at all."

Another priceless moment came at the game on Saturday. No one can enter the field as a substitute until the ref notices them and signals them on. Typically, Lisa calls from the sideline in a steady cadence when she wants to sub, "REF, SUB. . .REF, SUB. . .REF, SEB" until the ref signals that its okay. This is typically quite effective. Saturday, the ref appeared to hear the other coach's signal for a substitute almost immediately every time, but kept overlooking Lisa's more effective (in my opinion) call. At some point, he looked up, saw a Mystic player standing ready to sub and finally noticed Lisa's "REF, SUB. . .REF, SUB. . .REF, SEB." He took a step towards Lisa and said, "Sorry, coach, you sound just like my wife. I must be tuning you out." Then he turned, jogged up the field, and re-started the game. After that, we lowered our voices as deeply as we could to call for the subs and had no problem getting his attention.

By the way, Erin's team took their first game 5-2 and lost a squeaker on Sunday 2-1. Next week we have the blessing of a home game with an afternoon start. No early morning drives into Houston. No excuse to miss church.

A Use for Willie

September 13, 2007

I forgot to mention something you can do this month to promote Pediatric Cancer Awareness: donate blood. That's what I did this morning. Unplugging a vein and dripping into a bag took 6 minutes and 35 seconds, according to my blood tech. Doing the paperwork took a few minutes longer. Do someone a favor. Save a life. Give blood.

On with the update. . .

Willie resented the start to school more than anyone. Sure, Erin belly-ached about the earlier bedtime, but she more than made up for that inconvenience by getting to hang with her friends and learning all the fifty states. Walter and I might have felt like lounging around for a couple more weeks before we took the plunge into the fast-paced fall, but we appreciate the back-to-work salary that goes with the back-to-work job. Willie appreciates none of it, as demonstrated by the renewed feasting going on at my house in my work-day absence.

In the meantime, I have been pondering the many e-mails and comments prompted by my request for what to say on the radio last Friday. Thank you all for pointing out both the obvious and subtle things that the public ought to know about pediatric cancer. I think we did okay--Dr. Vance invited us to be his guests again next September to celebrate(?) Pediatric Cancer Awareness Month. We agreed, and as everybody knows, once something gets put on my calender, it gets done! But back to the thought I started with (unless it died of loneliness waiting for me to get back to it). I wanted to thank my friend Phyllis Washburn for the following advice:

I think you should stress how your family has tried to maintain a normal life for all of you. I have been so impressed with the upbeat attitude of each member. I believe that your positive outlook on life and your faith has made a real difference in how Erin views her illness.

Now, I'm not sure I know what "normal" is. I have always really considered myself more akin to the brain in the jar presented by Igor (pronounce eye-gore) to Gene Wilder in Young Frankenstein: "Abby somebody, Abby Normal, I think." I do know that whatever we do, we do for love. Cancer has stripped almost everything else that wasn't essential away from our lives.

Beyond love, I have only a few other bits to offer (based on my experience with the stress and tension brought on by approaching scans and the other abbynormalities in our lives).

1. Humor. I rely heavily on humor and constantly look for things, even little things, to laugh at and with. I especially like to share jokes and funny, private moments with Erin.
   
2. Tolerance of Ambiguity. I work very hard at not having to be sure of everything (those who have known me for any length of time realize that this is a real stretch for me, Vickie "Know-it-All" Buenger). I try to look at the positives of fuzziness and remind myself that it is pure hubris to imagine that I have to know/control everything.
3. Valuing Erin. When those two fail and I feel the churn start in my stomach, I just ask myself about how I want to spend my time with Erin. The future holds variations of two scenarios: survival or not. If she's going to survive and grow to adulthood, do I want to waste time in the dark moments of worry and anxiety? Answer: no, that would be counterproductive. If she's going to die, do I want to waste the even more precious time I have with her in the dark moments of worry and anxiety? Answer: definitely no, if I only have her for a short amount of time, I want to squeeze every bit of positive I can out of the time.
   

While these three carry me pretty far, the inevitable dark moments poke their way into my thoughts. Why has Congress kept the Conquer Childhood Cancer Act of 2007 bottled up in committee, while at least eight children I can think of have died since we went to Washington? What will happen if Erin's tumors flare up? What happens to cancer families who can't afford treatment and who lack the support network we have?


Final Solution. Because I have an obnoxious dog who will eat up the house if he doesn't get exercise, I spend the first 25 minutes of every single day walking Willie. I give myself permission to let my mind wander through random thoughts about Erin and her illness and the insidiousness of it all during these mostly pre-dawn walks. Usually, after about ten minutes or so, my mind wanders on to other topics, and by the time I have made it home, I have set aside any negatives and am ready to start the day. If I have any lingering doubts, I look at this (taken at Mark and Alicia's wedding in July) and refer back to #3 above.

300 to 1 or Don't Be a Cow

September 10, 2007

When I started Texas A&M University in the fall of 1978, the formerly all-male university had grown and changed enough that the ratio of men to women had fallen to 3 to 1. My simple eighteen-year-old thinking concluded that the odds weren't that bad. It meant that my dating share was three guys and probably more, since some female student might have already settled down with their true "one" and released their other two back into circulation and other women might not have had the ambition or skill to attract their three. The more I thought about it, the better the odds got. By this way of thinking, things would just get better and better if the ratio went to 30 to 1 or even 300 to 1.

These days, when I hear 1 in 300, all I can think of is the childhood cancer statistic: one in three hundred children in the U.S. will develop cancer before they reach adulthood. That always reminds me of another grim statistic. I read that each and every day of the year--Sunday through Saturday, Spring, Winter, Summer, Fall--a whole classroom of children will hear the cancer diagnosis. Frankly, I always imagined that meant twenty or so children per day. I was horribly wrong. The truly grim reality is based on a classroom size of 35. (If you are thinking you hope your child gets to be in Erin's class since she already has cancer. . .that's not the way statistics work.)

This month, September, is Childhood Cancer Awareness Month around the country and in Brazos County. If you do nothing else all month, you should do something to spread the word and help the cause. Here are some ideas:

• visit a pediatric cancer patient's website (here is a good place to go: Kids Cancer Crusade), and leave a word of encouragement;
• donate to Alex's Lemonade Stand (supports all pediatric cancer), or better yet, make plans to hold a lemonade stand yourself;
• give up your lunch and send what you would have spent to Lunch for Life to (supports neuroblastoma research). Ask your friends and co-workers to do the same;
• Support these dads (by going to Loneliest Road) who are riding their bikes coast to coast to raise money and awareness for Neuroblastoma treatment and research;
  
• Write your Senators and Representative and ask them to support the Conquer Childhood Cancer Act of 2007 (S. 911 and H.R. 1553) and to help get it out of committee and onto the floor of the chambers this month (this will authorize $150 million for research over the next five years);
• Watch this video (http://www.youtube.com/watch?v=AGS4yE5v9rM) and brain storm ways you can help;
  
• Stop by the CureSearch website and read about even more things you can do to help in the fight against childhood cancer.

Thank you to all who have already helped in this cause. Every bit you do makes a difference. When I was a child, everyone I knew who had cancer died. We didn't even say the "C" word. Today, because of heightened awareness and a better flow of research dollars, many can be saved. Nevertheless, it will take millions to find a true CURE.

SOME FACTS ABOUT PEDIATRIC CANCER:

Childhood cancer is the number one disease killer in children.

Neuroblastoma is the most common cancer in infancy.

Neuroblastoma is the most common extra cranial solid tumor cancer in
children.

Every 16 hours a child with neuroblastoma dies.

There is no known cure for relapsed neuroblastoma.

Nearly 70% of those children first diagnosed with neuroblastoma have disease that has already metastasized or spread to other parts of the body. When disease has spread at diagnosis and a child is over the age of 2, there is less than a 30% chance of survival.

Childhood cancer is the leading cause of death by disease in the US and it
kills more children per year than cystic fibrosis, muscular dystrophy,
asthma and AIDS combined.

There are 15 children diagnosed with cancer for every one child diagnosed
with pediatric AIDS. Yet, the U.S. invests approximately $595,000 for
research per victim of pediatric AIDS and only $20,000 for each victim of
childhood cancer.

The National Cancer Institute's (NCI) federal budget was $4.6 billion. Of
that, breast cancer received 12%, prostate cancer received 7%, and all 12 major groups of pediatric cancers combined received less than 3%.

The American Cancer spends less than 70 cents of each 100 dollars raised on childhood cancer.

I'll close with an Erin story and a video. On Labor Day, Erin's team played in a tournament in Austin. At halftime of one of the game, their trainer gave them a lecture about their hard headedness. He pointed out that they continued to dribble the ball straight into their opponents, like they were expecting them to move out of the way. He told them they reminded him of cows. He proceeded to dribble the ball straight into a post and then continue to bump his head, his shoulders, his knees, and his feet into the post, while mooing loudly.

Later that night I came across the girls in the hall of the hotel and shot this quick video:




Now it's your turn to decide: are you going to be a cow and continue what you have always done, or are you going to change something, do something, help in some way?

What should I say?

September 5, 2007

You may remember that September is Pediatric Cancer Awareness Month. Doug Vance, who hosts a radio show on KEOS FM 89.1, invited Erin and me to guest on his show this Friday night from 6:00-7:00 to talk about childhood cancer. We will be his only guests for the entire hour.

My question to you: what do you think are the essentials we should mention?

Sixty-Minute Girl

September 2, 2007

When we last left our heroine she had a day of school under her belt and had traveled to Houston for her latest clinic appointment. She checked out just fine (and relatively quickly, since Shari Feinberg, her nurse practitioner, has two competitive soccer players of her own, and we all needed to hit the door, beat the traffic, and get the kids to practice). Before we actually landed in clinic we dropped off requested stuff at Davis's dorm and talked Davis and his roommate Sam into lunch (not a long conversation).
We headed over to the Rice village to meet . I have written about Sam Hutchinson here before. Sam is a fun-loving, soccer-playing, heelie-wearing, taco-eating, video game- playing, bike-riding, Magic Treehouse book-reading, bionicle-building, transformer-transforming, brother-tormenting, brother-loving, baby brother-kissing, speed-loving red-headed seven year old with relapsed neuroblastoma. Currently, Sam, like Erin, is benefiting from excellent doctor and parent care. When I heard that Neil and Margot (wunderparents not only to Sam, but Andy and Charlie, too) had planned a trip from San Diego, California to Houston, Texas for the last week of August for Sam to take part in an immunotherapy trial open at Texas Children's hospital, I knew they were crazy enough for the Buengers to love them. I was right. We met up for lunch on Tuesday and talked non-stop about children, soccer, treatment, and a thousand other topics and thoughts we shared. Right now, Neil and I are plotting to have Erin marry both Sam and Andy. Andy is four, so Neil figures 7+4 = 11 and Erin is 10, so it would probably work out just fine. The union would practically guarantee red-headed grandchildren for both families (if those darned side-effects from cancer treatment don't rear their ugly heads and put grandchildren out of the equation). Kidding aside, it was a delight and an inspiration to meet the Hutchinsons, and we hope to keep bumping into them and celebrating years of successfully keeping NB at bay.

The rest of last week breezed along like the first part (luckily we got a first week break on piano lessons and church choir or I don't know how we would have fit it all in). The big event of the week was Erin's first out-of-town soccer tournament. We packed up five little girls (and their not-so-little collection of paraphernalia) on Friday night and headed to Austin.


For Walter and I, it was deja vu. We did the usually soccer tournament stuff--forcing players to chug gatorades and water in obscene quantities, slogging through dew-covered fields schlepping gear while watching the sun rise over the cow pasture adjoining the fields, attempting not to poke out our eyes with pointed objects when players arrived without essential uniform parts, despite numerous warnings. We saw a ref from the old days. He asked us what we were doing at the field since Davis had graduated and moved on. We told him we had gone back to "Start" and were taking another go at it. He winked and laughed. As we walked away, we considered (only for a moment) whether we should get busy tonight creating a Mystic or Magic 08 to go with our Magic 88 (Davis) and our Mystic 97 (Erin). We took a secret ballot and decided unanimously that two was plenty.

Erin had enough soccer to last her until Tuesday. Her team charged hard in two losses and a tie. She played every minute of all three games (the only field player to log a solid sixty minutes per game). She also made the (figurative) highlight reel for the tournament, swooping out of no where to clear a sure goal off the goal line and into the clear after the ball had skidded past the sweeper and the diving goal keeper. Here are few more of those Mystics: