TED-dy

March 28, 2008

Erin double dipped yesterday after school: dentist and physical therapist. On the teeth front, I can report no cavities and only four remaining baby teeth (three of which are currently loose). Since the tooth fairy in her zone delivers a dime for each year of age she is, she's hoping to put off teeth loss until after June 20, so she can garner forty more cents. Physical therapy also went well, in that Kelli gave her thirty-five minutes of deep massage and helped her stretch her quads and hips (which is apparently crucial to easing what's going on in her back). It might have hurt, but it didn't require Erin to work very hard (which is the way physical therapy always looks on television). I think if she can get her pain under control and avoid her back locking up on her several times a day, then Kelli will introduce the harder part next week: building up her core muscles, with home workouts. I can't tell you how giddy with relief I am that we have a plan for eliminating Erin's pain, and that it doesn't involve any form of chemotherapy at all (or have anything to do with tumors).

Erin's giddy, too, but not for the same reason. Yesterday, Erin finally got the pay off for all the times in the last months that she has wished on the first star, thrown a penny in a fountain for a wish, and relied on the fortunes of a wishbone. Teddy came to live with us. Teddy is short for TED (not really shorter, but you know what I mean), and TED is short for Totally Erin's Dog. So this dog is neither a tribute to our pastor (sorry Ted) nor some environmental statement about Turtle Extrusion Devises.


Erin had worked and saved $95 so she could get her own lap dog from the animal shelter. Her three criteria were that it had to be relatively quiet (so its barking didn't stir up the other three dogs), it had to be cute and small (more on that later), and it had to love her. It has taken two weeks of visiting the shelter every day to find "the one." Teddy is a female Shih tzu mix, maybe a couple of years old (and already housebroken). She weighs less than 10 pounds, but I forgot to ask exactly how much.

Erin was a great little caretaker last night. . .very solicitous of Teddy's needs. She spent the evening cozied up with the little dog, who conformed to all the expectations that Erin's had conjured from her vivid imagination over many weeks about what "her" dog would be like. Without too much convincing, Teddy curled up just inside Erin's armpit with her chin on Erin's chest, while Erin read, almost like she had seen an advanced copy of Erin's script. Erin also took care of the feeding, watering, and potty duties. Bedtime was crate time. Erin had gone to the effort of sleeping with an old bath towel nightly since spring break to imprint her smell in hopes it would comfort Teddy when she put her and the towel in the crate for the night. That didn't work perfectly, as Teddy protested the crating a bit, but eventually they both drifted off to sleep.

The rest of the family hasn't welcomed Teddy quite as enthusiastically as Erin, but we're trying, and so far so good (although I must admit, she hasn't seen the Full Willie yet, only the I'm-Trying-to-Be-on-My-Best-Behavior Willie). At the risk of hurting Erin AND Teddy's feelings later, if they read this entry, I have to say that in my opinion, Teddy only meets two and a half of Erin's three criteria. So far, she hasn't barked much. She really does seem affectionate. And especially by Buenger household standards, she is small. But cute? You be the judge.

Physical Therapy

March 26, 2008

Erin's appointment with the physical therapist confirmed some thoughts Walter and I had about Erin's back. She has two places, one on either side of her spine, that appear to knot up, grab, and trigger muscle spasms (how come every time I write that word I spell it S-P-A-M-S the first time and have to go back and correct it? I also start humming "Spam, spam, spam, spam" a la Monty Python. Hmm.). I think each troubling area covers about six or seven inches vertically and a couple of inches wide--pretty much most of her middle back. Apparently, a variety of factors may contribute to these cascading events, all related to that damned divot on her back. And how wrong is it that when I heard this news from Walter, my heart got lighter, celebrating that Erin has lived with backs spasms and large muscle cramps for the last week and a half? I guess almost anything trumps tumor progression.

Now we are waiting for the physical therapist to develop a plan and run it through the channels (pediatrician, onc doc, the surgeon who created the divot). Erin is hoping for a heavy dose of hydro therapy and many massages, though I suspect the PT will opt for repetitive and perhaps painful exercises and stretches. In that event I will hope to read your ideas for affordable bribes. I think we will sit out soccer for a bit, until we can keep her from tying up every time she exerts herself.

Radio Silence

March 24, 2008

I haven't updated in a week. Have you noticed?

Besides the usual foot dragging that comes with leaving spring break behind and plunging back into the semester, we faced last week with Easter rushing at us at full speed and a pair of out-of-town soccer matches scheduled for Saturday. Did I mention we expected company for the weekend? Oh, and I got behind on midterm grading by actually taking a "Break," instead of laboring, so I had essays and reports to read every day.

Of course, we had to take time every day (I mean that literally) to stop in the Brazos Valley Animal Shelter. Erin has saved her shekels and now can afford to purchase her very own dog. (Asking whether we need a fourth dog is like asking whether I need another hole in my head.) Of course, we could forbid it, or even delay it until Luke has moved on to doggie heaven. However, that cunning child o'mine has used uncanny reasoning and negotiation skills to back us into a corner. Everything else she has listed that she might do with her hard-earned money does not fall into the category of Make Your Parents Jump Up and Down with Excitement and Anticipation. A new dog seems "the lesser of two weevils" so to speak.

So far, the Gods seem to be with us (Walter and I) on dragging the process out. Erin has very specific criteria for her dog-to-be: it must be mostly a non-barker (so it doesn't stir up the existing pack), it must be cute and lap-dog sized, and it must demonstrate that it will attach to her (not to her leg with its teeth). We have hit two out of three several times, but so far we haven't adopted. We'll try again this afternoon.

Erin also had counts done last Thursday (a little lackluster, in my opinion):

HGB: 11.4

WBC 3.1

ANC 1.8

PLT 262

BUN 29 (5-26), I wonder what Dr. Russell will have to say about this (it's no higher, but it's also no lower than last time)

Creatinine .9 (.5-1.5)

AST 33 (0-40)

ALT 20 (0-55), I threw these in because its pretty rare for Erin to have these liver function numbers bot in the normal range. That's a good thing.

I view all the busy-ness as particularly helpful last week. It gave me very little time to contemplate the ramifications of the fact that Erin was asking me for Tylenol for back pain almost every day, some times several times a day, and often first thing in the morning before she had done anything more strenuous than dragging herself out of bed and into the kitchen. She also had serial headaches. At times I hoped she would develop a fever or some other symptoms that would put her aches and pains in the context of some easily identifiable childhood illness (other than neuroblastoma), but nothing materialized. I was left continuously wanting to press her belly to feel for tumors bulging against her spine and searching her face for the telltale signs of raccoon eyes (both very real impulses for neuroblastoma parents)

Finally, on Thursday, when we went for blood labs, my anxiety had reached a level where I affably agreed to hang around the doctor's office for a couple of hours so that Dr. Parr could palpate Erin thoroughly. He could not feel a thing. After a long discussion of possibilities and in the absence of any other evidence, we think that Erin is just growing and putting a lot of strain on her back (which, because of the surgery to remove what we cheerfully refer to at our house as the atypical spindle cell neoplasm to distinguish it from other tumors Erin has grown, is missing quite a lot of muscle tissue necessary for back support. . .if you have no clue about what I am talking about, you might want to review entries from late summer and fall of 2004). She has an appointment with a physical therapist tomorrow to get an assessment and, hopefully, a program to help ease the pain and give her more strength, stability, and flexibility.

The pain didn't stop after Thursday, but I did re-group and start thinking about it differently (much less panick-y). We had a relaxing day of Friday with Erin's buddy Jesse over for some romping around and fresh hair cuts for both me and Erin. We checked the status of the blue bird boxes, and now have four hatched babies in each of two boxes, and eggs in waiting in six others. We also spent the evening eating and laughing with my sister Elisabeth and her daughter Annabelle. We were sure glad they made it down for (a much warmer) Easter this year.

Well, I've been holding back they news I should have led with, but if you have read this far, you deserve a reward. Erin scored her first goal in a real game. She scored the only goal her team made all day. She acted like she did that sort of thing all the time. Sydney dribbled the ball past her defender up the right side line and flicked a short pass to Megan at the edge of the 18-yard box. Megan got her head up (like we taught her) and spotted Erin standing near the 6-yard box and managed to get the ball right to Erin's feet. Erin took the pass with her outside foot, controlled it, and plugged it right past the keeper's weak side. Wow! A Kodak moment. It took the edge off the pain (and the pair of close losses: 0-1 and 1-2), leaving us ready to meet the hope of Easter head on.

Easter brought a lovely worship service, beginning with an Easter lily procession manned by the children of the church. Erin, Nico, and Adam, along with their compadres chimed their bells for some very special music. I have to say it was the most complex piece they had ever attempted, and they pulled it off well. Very inspiring. And it's always so cute to see their little furrowed brows, total concentration or their faces, and their lips moving in sync, counting out the beats of each measure.


We adjourned to a lovely restaurant for an Easter buffet (who had time to cook, much less shop?). Erin's church service art work, displayed above, provided a suitable centerpiece for our table. We even got Willie to look at the camera, almost, for the family snapshots when we got back home.


I ended the weekend with my own Easter miracle. My soccer team (the Soccer Mom's Club) recorded our first non-loss, a 4-4 tie against the team from St. Mary's. I suspect they were not at their best having celebrated the day, no doubt, in much grander style than us.

A Friend I Never Met

March 18, 2008

What do these two pictures have in common?



This is Harrison Nichols. This is his birthday cupcake.

Why are these images on Erin's website?

Harrison and Erin were diagnosed with Stage IV neuroblastoma weeks apart (Harrison in May 2002; Erin a few weeks later in early July) and a thousand miles apart. We never met, but I have cybervisited him almost every day for half a decade. When I first tuned in to Harrison's website, the first thing I noticed was his incredible strength and vivaciousness. I also felt an intensely compassionate and intelligent voice speaking for him through his website. Many times the entries began with an apropos quote that captured the essence of the journal entry or set the reader's eyes on something inspirational or uplifting.

Later I noticed a certain theme in the path that Harrison was following. Every three months or so, his mother, Gina, would write "still stable" and "disease remains stable" and at the time (before Erin relapsed), I had no clue about why she would be so happy about her child still having measurable disease. Eventually, I figured it out and am now the one trying to explain to others why it makes me happy to report when Erin has a stable scan.

You may remember that I reported dropping some stitches in February (losing the check book among other things). On the whole I was just "off." Part of it was because of Harrison. You see, he died on February 17, a month shy of his ninth birthday, after surviving neuroblastoma and its various treatments for almost six years. The club of children diagnosed in Erin's cohort lost another member. In fact, it's getting to be quite an exclusive and small club (perhaps a topic for another day).

I was reminded of Harrison's passing this week by two separate things. The obvious one is his birthday today, and Gina's admonition "Harrison would have celebrated his 9th Birthday, this Tuesday, March 18th. I will not have the strength for an update on that day but please think of him and that beautiful sweet face and maybe eat a green cupcake or two!" I bought green cupcakes yesterday for the Mystic soccer practice tonight, in honor and memory of Harrison.

I also thought deeply about Harrison when I read Pat Lacey's blog Abyss last week. He wrote:

Eventually this disease drags the child it has in its grip to the edge of the abyss. It pulls along the child and their family kicking and screaming with it. . . .

Knowing that eventually we will have to take a final stand against impossible odds has always been a reality. However, now that I know who will be standing there with me gives me such extraordinary strength, resolve, and peace.

He has found a peace that I hope the Nichols found, and I hope the Buengers will find, as well.

Gina's Restaurant

March 15, 2008

This update is for folks in the Brazos Valley. I have kept this under my hat for several weeks, and I still don't have complete information, BUT I want all of you to know that Gina's Restaurant will re-open (it looks like soon) on Groesbeck in Bryan.

Gina's was the Buenger's favorite restaurant for eighteen years. It opened months before Davis was born and close months before he left for college. We ate there about once a week during the intervening years. Once Gina Cortez got all of her children through college (and Eddie through South Texas Law School, a feat that took longer than it should have), she closed up shop to take a much needed rest.

A few weeks ago I drove by a tidy brick building on the way home from downtown when I saw someone painting a sign that looked like it was going to say "Gina's." I crossed my fingers and added Groesbeck to my regular errand route. Evidence has mounted enough that I feel confident announcing the return of Gina's. (Note to self: although there is only one stoplight between my house and Gina's, please remember to stop on red, as Leonard and 2818 is a dangerous intersection.)

What Would You Do Next?

March 13, 2008

Last time I updated we had returned from our mini-vacation to Corpus Christi, and I had made the quick trip down to Houston to return Davis to campus. We buzzed through a couple of loads of laundry and re-packed suitcases for me and Erin. First thing Monday morning (well, when I say first thing what I really mean is second thing. . .the real first thing was watching the bottom fall out of the sky to start an all-day rainfest) Erin and I headed to Anderson Park for our three day mini-soccer camp extravaganza.

You might doubt my sanity.

I chose to spend the first three days of my spring break staying in a (rather rundown) hotel suite with seven 10 and 11 year-old girls. My friend and co-coach Lisa Villalobos did exactly the same thing right across the hall way from me. We didn't make it outside at all on Monday, though First Presby Church gave us a break and we used the fellowship hall (Marie, notice I didn't claim that our church had a gym) to run around, play, and dissipate some of the energy that had built up in the fourteen girls over eight consecutive hours of indoor tactical sessions. It really wasn't as dreary as all that. Lisa had made up a variety of games like Soccer Trivia (not really trivial trivia , like who scored the winning goal against Romania in the EasterEuro Cup Quarter Final match in 1967. More like soccer terminology that we might use that novice players might not know) and my favorite, What Would You Do Next? In What Would You Do Next? we showed the girls various field situations and asked them what options they would have for moving with and without the ball. They really got into this and proposed creative and sometimes appropriate alternatives.


We also let them swim in the not heated pool, which was somewhat akin to letting them swim in Puget Sound in February.


After blowing off some steam with indoor soccer, we showered, ate, and played a little cards before dropping off to sleep.


Erin tucked in with Sydney; Kylie and Kaitlyn shared a room, and Megan, Morgan, and Emily thought they could squash all three of them into a double bed in the third bedroom. I kissed them each goodnight on the forehead, and got my room (AKA the living room) ready for bed. That's right. I drew the sofa option. . .the sofa option had five feet four and a half inches of seating (or lying) space. I'm five foot six inches. Almost (I emphasize almost here) perfect. Oh well. It had the strategic benefit of being in the cross traffic to both bathrooms.

On Tuesday, the sun came out, and even though we had two inches of rain on Monday, the ground was firmer than it had every right to be. We headed out to the park and knocked it around. The rest of the camp went exactly as planned: lots of soccer, lots of laughs. When we weren't on the field we did soccer crafts and watched a soccer game and a soccer movie.

We even had the girls write their parents thank you notes for letting them come to camp: Here is my little Mystic writing her note:


The only other remarkable thing was that I got to play my own bonus round of What Would You Do Next?

Here's how it went: Spending three days with fourteen pre-teens is not hugely consistent with privacy and quiet time. I had the cunning plan of waking about forty-five minutes earlier than everyone, dressing, having a cup of coffee, and doing a bit of reading before the mayhem. The first day went off without a hitch, and I began the camp day with a peaceful heart. The second day started fine. I made the coffee. When I went to toss out the packaging the coffee came in I noticed housekeeping had not picked up the full trash can, so we would have not place to put our breakfast detritus.

What Would You Do Next?

I did just what you would do. I found an extra trash can liner, tied up the full trash bag, and went to set it out in the hall. Unfortunately, since I was doing my usual domestic duties, I momentarily forgot I was in a hotel. As I moved a few feet down the hall to put the trash somewhere that the girls would not trip over when they stormed into the hall, I heard to door click shut. . .with my key inside. . .and my cell phone inside. . .and my shoes inside. . .and my non-pajama clothes inside.

What Would You Do Next?

That's right. I knocked on the door. None of the girls, sleeping behind the closed doors of their bedroom, heard me.

What Would You Do Next?

Since it was 6:30, I thought I might risk a quick trip down to the lobby to get another key. As I walked up to the desk, I said, "Does it ever happen that someone locks themselves out of their room accidentally?" The clerk said that he had actually done that himself once in Austin. He started looking for an extra key, but I seemed to have the only two for that room. I was ready for that and asked if he would just call someone from housekeeping or just get the housekeeping master key and let me into the room. Shea (that's what he said his name was) said he'd love to do that, but since that very night was his first night on the job, he had no idea where such a key might be. He added that if I just hung on until 7:00, his manager might show up and solve the problem.

What Would You Do Next?

I asked Shea to call up to the room, and I would get whoever answered to let me in. He started dialing, but couldn't seem to get through. He said, "Oh, it would help if I didn't use the broken phone." When he tried on the other phone, he had no more luck than on the broken phone. I was getting a little less understanding by this point. It's true that the mistake was mine in the first place, but it was easy to forget that when I was standing bare-footed on cold marble in my pj's talking to a newbie desk clerk who couldn't work a phone. He said, if I called the hotel, he KNEW he could transfer my call to the room. KNOW is a relative term. I think he knew theoretically how to do it, but not actually.

What Would You Do Next?

I went back upstairs, intent on knocking until someone answered or until I bloodied my knuckles. As I started knocking I heard my cell phone alarm, "Fanfare" going off. I knocked and knocked and knocked some more. Eventually, I heard little footsteps stomping across the floor and a voice that said, "Okay, okay. I'm coming. I'm coming." The door cracked and my little red- and toussle-headed daughter looked up at me through the crack in the door, smiled, and let me in.

I think I won.

We're Back, for a Moment

March 9, 2008

The Buenger's quick trip to Corpus Christi created some weather angst. For Erin's part, hitting the south Texas coast meant that we missed the (ever so brief) snow here in the Microplex on Friday morning. It also took us directly into the face of high winds, shivery temperatures, and a nearby tornado. We were unaffected by the Nueces County tornado, but did get a full face of wind, rain, and the shivers. In fact, Davis, Erin, and I were stranded for about an hour in Betty's Cat House on Water Street in Corpus when a heavy downpour interrupted our shopping date (that's right, Betty's is a boutique with cat accoutrement, not a baudy business as you might have suspected). We had made some small purchases and were headed to the door, when I noticed that we would have to cross ankle deep water just to make it to the door. We hied it to the opposite end of the store, and even though the street it faced was not named "Water," it was inconveniently not named "Dry Land" either. With our way blocked on both ends, no car, no umbrellas, and no rain gear, we decided that we hadn't shopped at Betty's long enough. The young proprietress seemed unfazed by either our lingering or by the water rising into her shop from under the front door. She pulled a shop vac from some tucked away storeroom and vacuumed up bucket after bucket of water, until the rain finally stopped and the Buengers took their token purchases and departed.

In addition to some light shopping, we made it to the Texas State Aquarium and to the movies to see the Spiderwick Chronicles (which had opened and closed here in Bryan faster than we could get organized to see it). On the way down to the movie house, Erin and I saw something that made us both say Hmm. We passed a Methodist Church with a fifteen foot tall statue of Jesus (no that wasn't the Hmm part. Such a site is fairly routine in the city called "body of Christ"). No, what made us say Hmm virtually simultaneously was the marquee next to the statue that said, "PET BLESSING AND FREE VET CHECK, TODAY!" and there we were without Willie who needs all the blessings he can garner AND without Luke who has had many, many vet checks before, but they haven't been free or even affordable in a long time. We also made it to the Corpus Christi Museum of History and Science, where Erin not only tried out all the hands on exhibits, but she also conversed freely with clutches of historians gathered there (did I mention the reason we went to CC was to attend Walter's history convention?).

The high point of the convention for Erin, besides swimming every day, was the book exhibit, which she insisted on calling the Book Fair, like at her school. Gayla Christianson, who is the Director of Marketing for the Texas A&M University Press, had the cunning idea to tell Erin that her dad had an open account with the press, so if she saw any books that she wanted, just to tell the person at the register to put it on her dad's tab. Let me just say that Erin couldn't carry all the books she bought "without money." The Press paid Erin back a little for her patronage by sponsoring a lovely dessert reception on Thursday evening. Erin may have erased whatever profit the Press had on her purchases by consuming copious amounts of cheesecake squares and mousse cups. Thanks Mary Lenn!

We got back yesterday, just in time to washed all of Davis's clothes, have a nice family meal together, then head out the door this morning to return him part two of the semester. Tomorrow, Erin and I head out across town to do a three day mini-camp with her soccer team. There will be a little work, and I hope a lot of giggling and bonding, as we work on some team building and tactics for the upcoming Cup season. I promise I will update The Report later in the week when I have time to reflect on my wonderful son and digest the information that he may spend next fall in Budapest, Hungary studying at the Institute of mathematics there.

Bill Clinton Has Nothing on Erin Buenger

March 4, 2008

As I sat at breakfast yesterday reading the local paper, the story that jumped out at me was that former President Clinton had visited our relatively small community on Sunday to campaign for Hillary. The article noted that he had made similar stops (an hour speech, plus ten minutes of hand shaking) on Sunday in Wichita Falls, Abilene, Houston, and Marshall. Click on this map to blow it up, then view the territory he covered.


This seemed like a pretty hectic day. By the time I finally put Erin to bed last night, I had decided the Bill Clinton had nothing on Erin. She started her day at school (8:00-3:00), did her study council hall monitoring duty afterwards, flew straight to piano lessons, then to Honor Choir rehearsal. After that she went to a Girl Scout meeting. No, she has not started scouting. She was the invited speaker for Troop 9080. These girls have decided to support Lunch for Life as their philanthropic project this spring, and wanted Erin to fill them in on the details of having cancer and what funding cancer research means to her. By 7:00 we were back in the car to meet Walter and Davis for dinner at Chef Cao's, leaving only homework and ablutions before she could hit the bed.


I, on the other hand, eventually crumble when faced with an ever-expanding, impossible-to-maintain schedule. Case in point: last month, Erin's soccer team that I coach, was scheduled to play in tournaments over three consecutive weekends. This, in addition to my professoring, housekeeping, and wifing duties was probably too much, as evidenced by the fact that I never remembered to look for my toiletry kit hanging behind the bathroom door in the Georgetown hotel where we stayed for the second tournament. I had to phone and sheepishly request that they mail my kit, having to add "and quickly, too, because I need it for the tournament next weekend." Not a huge slip up, but a sign that I wasn't dotting my "i"s or crossing my "t"s.

Unfortunately, that was not the worst of it. Here's a dirty little secret: I've been looking for our family checkbook for over a week. I remembered writing a check on February 20, but had no recollection of it after that. Yesterday, I found it. It arrived in the mail with a note of apology for its mangled state from the Dallas, Texas post office (you can check out the map again to note that Dallas isn't the next city over from Bryan). From what I can pull from the dim recesses of my memory, I must have finished paying some bills, walked outside to place the envelops in the mailbox and to return the checkbook to my purse in the car and absent-mindedly put the whole stack in the mailbox. . .and off went my checkbook like a stowaway on Bill and Ted's Excellent Adventure.

Luckily for me, with coaching school behind me (that's right I am now Licensed to Coach, sort of like James Bond), and spring break approaching, I think I can get a handle on the runaway schedule. We leave tomorrow for a little break down in Corpus Christi, and I will still have some time to catch up and re-group before we have to get back in the groove. I guess I'm lucky in a way. I have this built any alarm system that let's me know when I have taken on too much. I just start dropping stitches, then I know I need to cut back.

Erin's Letter

February 29, 2008--Second Post Today

I don't know if it's the unusual date (Leap Day) or the spectacular number of visitors to the site today (WELCOME SARAH SMITH FANS AND THANK YOU FOR STOPPING BY OUR CORNER OF THE INTERNET), but I was moved to post again. This time with the letter Erin has been working on for her senator:

Dear Senator Hutchinson,

My name is Erin Buenger. I am 10 years old and live in Bryan,
Texas. I am a happy and energetic girl. I play soccer and piano and
sing in the choir. I am on the Student Council at my school, and I
recently set the school endurance record for jumping rope. I
have met former President George Bush and Barbara Bush, Senator John
Cornyn, and my Representative Chet Edwards. My dream when I grow up
is work for the government as a Congresswoman, as President or maybe
both. Also one more fact about me is that I have cancer.

You may not know much about cancer in kids like me. Cancer kills
more kids than any thing else. It kills more kids in the US than
cystic fibrosis, muscular dystrophy, asthma, and AIDS combined. In
fact every sixteen hours a child with my kind of cancer,
neuroblastoma, dies. Think about how many kids that is! I do not
know the exact number, but it is a lot.

When I was first diagnosed with neuroblastoma, I was five years
old. I was in the hospital for 75 of the first 150 days I was in
treatment. That sounds like a lot, but compared to other kids with
neuroblastoma, I was pretty lucky. By the time first grade rolled
around, I was as good as new and growing hair. I'd like to tell you
that everything turned out great, but it didn't. I relapsed when I
was in the second grade. Talk about a bad way to spend spring
break. Finding out you have cancer again is pretty bad. (My parents
didn't tell me at the time, but now I know that relapsed
neuroblastoma has no known cure. I'm hoping that doctors and
scientists can discover something to change that.).

I am writing to you so that you will know first hand about a kid
with cancer. Since you are my Senator, I figured you would want to
know, so that you could vote for the Conquer Childhood Cancer Act (S.
911). Before you can vote for it, it has to get to the Senate floor,
which means it has to have 60 co-sponsors. It has 53 today, and I
wish that you were one of them.

Your Friend,

Erin Buenger

Don't look for any more posts until at least Monday. At 6:00 this evening I start an eighteen-hour training course to get my "E" License to coach soccer (three hours tonight, nine tomorrow and six on Sunday). I'm pretty good at book learning, but thirteen of the hours are out on the field and involve the students (like me) pretending like they can actually play soccer. I can already tell I'm out of shape just thinking about it. Did I mention I was old, too?

Advocacy Update: Calling All Erin Fans

February 29, 2008

Some of you may wonder why the Senate has not yet voted on the Conquer Childhood Cancer Act (S.911). Here is my, probably flawed, understanding:

Historically, any Senator has the right to filibuster any bill. This means they can take the floor and speak continuously without yielding, thus "talking the bill to death." A vote for cloture breaks a filibuster. That means that if three-fifths of the Senators want the bill to be considered, they can break the filibuster. It also means that 41 Senators can keep a bill from consideration because they can threaten to vote against cloture.

Right now, 53 Senators have signed on as co-sponsors to the Conquer Childhood Cancer Act, S. 911, and 47 have not. So, even though a majority of Senators obviously support the bill (as evidenced by their willingness to publicly co-sponsor) and even though it only takes a majority to pass the bill, it will not get to the floor for a vote until it can demonstrate enough support (60 co-sponsors) to pass cloture without ever actually having to filibuster (can you imagine someone standing up and filibustering against the CCCA? I can't, but unless the members in favor can get 60 publicly on their side, those against the bill don't have to reveal themselves).

What does this mean? It means bad news for all of you who got very friendly letters from your Senators who have not yet signed on, saying something like "should S. 911 come for consideration before the full Senate, you may be certain that I will keep your views in mind." They make it look like they will weigh your views, but they may not intend for the bill to ever reach the full Senate.

Earlier this week (Monday night), a couple of the bill's co-sponsors (Senator Jack Reed of Rhode Island and Senator Ron Wyden of Oregon) used floor time to plea their case to their colleagues blocking the bill. This is a link to a fifteen minute video of their speeches. Today is the day you should pick up the phone and call your non-sponsoring Senators. Ask them to sign on so that the bill can get a hearing and pass, if it is the will of a majority in the Senate.

Here is a list of all the non-sponsoring Senators, as of noon today. Texans should note that Senator Hutchinson still remains in this category. There is also a handy email link for each of these Senators. If you don't have time to phone them. Drop them one more line. Please.

Tell them Erin is going to keep jumping rope in protest until they get with the program.

Spring

February 27, 2008


I know we haven't made it to the official start of spring, but living in Texas allows you to cheat winter a little. Having trudged through February, spending much of the month with nagging little worries about Erin's overall health, we have now set winter aside both metaphorically and literally. Monday temperatures locally reached above 80 degrees, only to drop yesterday to the low forties and this morning to the low thirties. This afternoon, however, bloomed in the perfect way: not too hot and not too cold. . . and thankfully not too windy.

Erin had school day to match the weather. Here's the conversation I had with her teacher, when I stopped by her classroom this afternoon to ask about the days she will miss next week when we go down to Corpus Christi:

Ms. K: "Did you hear what happened to Erin at P.E. this morning?"

Mom: "No, I haven't seen her."

Ms. K: "I could barely keep from crying when it happened."

Mom (thinking, did I miss a call from the nurse?): "Is she okay?"

Ms K: "Yes. She's fine. She set a new school endurance record for jump rope. She just kept jumping and jumping. Mr. Jennings [the P.E. coach] kept saying stop Erin, stop. . . you're going to get sick. But she just kept jumping. The whole class was yelling encouragements and got into rhythm saying go Erin, go, until they all drowned out Mr. Jennings. I could barely keep from crying."

At that point Erin skipped into the classroom, fresh from her after-school hall monitor duty. I turned, expecting her to report about this great feat. She said, "Guess what, mom?" I knew, but wanted her to get to tell me, so I shrugged. She said, "I got chosen for the City Honor Choir today. We're going to sing at an A&M baseball game. It's only the best fifth and sixth grade choir students from all twenty schools. Can I do it?"

Talk about a great way to slam the door on winter and the malaise it always brings my sweet precious girl. She hates the cold. She hates the germs. She hates the early darkness everyday. Did I mention, she hates the cold? But today is spring in every sense of the word. She can jump like a tiger and sing like a bird. Her doctor had no complaints about her lackluster counts last week, and actually thought they looked nice considering she had fought off an infection and some inconvenient drug side effects. My only regret about spring's arrival, is that Erin probably won't spend as much time with the Lego Project, and her room may be destined to suffer until cold weather returns next December.

Award-Winning Studette

February 22, 2008

The blood chemistries and CBC came back this afternoon. I had hoped for better:

Hemoglobin: 11.4 (low normal)
Platelets: 206,000 (sort of low for Erin, but just fine)
White blood count: 3500 (lowish)
ANC: 2100 (low normal)

BUN: 25 (high)
Glucose: 117 (high. . .don't stop at Sonic before counts)
AST: 46 (high)
ALT: 38 (high)

everything else normal

What does this mean? I hope Erin's doctor interprets the high BUN as a result of a bad health week and a reaction to the antiobiotics, rather than weak kidneys.

As you can see, Erin looks like she has made a complete recovery. She received two awards today, one for P.E. prowess and the other for her volunteer work after school for the student council.

Bit by Bit

February 21, 2008

What good turn did you do to make you so deserving of three posts in four days? I don't know, but I hope it was good and that someone else benefited.

Erin's body, I believe, has pumped most of the remnants of cefnidir out, and she has bounced back to something approaching normal. Her fatigue has dissipated (although that, too, has its downside since she busted her lip with an especially powerful kick while juggling her soccer ball last night). Her digestive track has returned to normal, as evidenced by the double servings of roast chicken, cole slaw, and pasta last night. For you tongue-watchers out there, the most powerful muscle in her body has resumed its usual size and acerbity. She still has a headache, common in the Brazos Valley these days, as the warm February has prompted the cedars (called junipers everywhere else in America, I think) to load their tips with yellow pollen.

Erin finished the three day topper of zithromax last night (you can imagine the bribes it cost me to get her to take even three days of a liquid medicine). We had counts done this afternoon. Since it took two sticks to get the venopuncture done, I didn't try for early returns to satisfy my base curiosity by making her do a fingerstick, too. I will have to wait until the next day like the general public.

We are getting ready for the weekend. I got a note home with Erin's report card today (lowest grade in any class this six weeks? 97), telling me I needed to report for parent duty tomorrow afternoon because Erin was receiving an award for her P.E. performance (little jock that she is). Our friends Bill and Sue, who moved to Ashville, North Carolina, have returned to town for a visit, so we will get together with them for dinner tomorrow, as well. Saturday Erin will bake for Sunday's Older Elementary Fellowship bake sale that they will hold on Sunday. Other than that, I hope we can find a little time for chores.

Her Tongue

February 19, 2008

My mother and I play a game called "Things that make you say hmm." (As a side note, "hmm" is said with a musing note, not with disgust or disapproval, like a harumph. It is usually a very brief exclamation intoned in the back of the throat, accompanied by lifted eyebrows and widening eyes, indicating wonderment, as to suggest, "I didn't expect that.")

Yesterday, as I waited six steps back from the customer in front of me (to ensure privacy, even though I have perfectly good hearing and eyesight, even at six paces) for Erin's new prescription, I heard a distinct clack, clack, clack, clack, clack, with an occasional click thrown in. I had chosen a point somewhere at middle distance to focus my eyes, to avoid looking like I was trying to eavesdrop on the pharmacy customer ahead of me. When I heard the noise, I looked around.

The first thing I spotted was a couple grocery shopping (my pharmacy is inside a grocery store, so this isn't remarkable or worth a "hmm." Although it almost was, because the man was carrying a pair of six month old babies, one on each hip, as he followed the woman pushing the cart through the produce section. I could think of several other, more convenient ways to shop with twins, but their choice wasn't that unique.).

I listened a bit more, and finally spotted a young girl, maybe 10 or 11, marching around the store. This sight made me say "hmm," because of the incongruity of what I spotted. She was wearing a blue, sparkly mini-dress and tap shoes (she seemed on the old side of dress up out in public) and talking loudly on a cell phone (she seemed too young to have a cell phone pressed to her ear while she roamed around the store). The combination (marching, costume, tap shoes, cell phone, too old, too young) created a "hmm" moment.

Here's another one:

Yesterday I corresponded with Erin's pediatrician about how Erin was reacting to the antibiotic she was on. I noted her fatigue, some headache, and unexplained moodiness. I concluded with "yesterday, she began noticing that her tongue 'felt wrong'."

The email program I was using underlined "her tongue" in both red and blue as if I had spelled tongue wrong and also used poor grammar. I checked the spelling, which I seemed to have gotten correct the first time, proofread the the whole message more carefully, and hit "send." Here comes the "hmm" part. The software popped up a warning box with the message that the mail I was trying to send would be offensive to most people. . . APPARENTLY BECAUSE I USED THE TWO-WORD PHRASE "HER TONGUE."

How do tongue doctors or shoe makers send e-mail if "her tongue" is offensive and blocked?

On the health front, Erin seemed less moody this morning though still more tired than usual. I have to pick her up from school in a bit, and I'm keeping my fingers crossed for a resolution of some of the side effects, including I hope, HER TONGUE. (I guess as long as I am going to be offensive to most people, I should go all the way).

A While Longer, Apparently

February 18, 2008

Last week, when I wrote "how long can it last?" I meant how long can Erin go without contracting the flu. This week, I mean how long can she go without feeling 100%, and the answer is "a while longer apparently."

When we last left our heroine, she was feeling punk and droopy, but had a diagnosis of bacterial infection and a new prescription for what I mistakenly called cefanex (actually cefdinir). I figured, let the good times roll: no flu and a quick go with a miracle drug. Erin had a four game weekend scheduled against a variety of pretty tough teams, so the quicker the recovery, the better.

Luckily for us (though not for the rest of Texas and the South) storms with heavy rains rolled through, washing out the soccer tournament and sidelining the Mystic '97. Erin probably didn't have the juice for a weekend of games. In addition to the usual handmaiden to antibiotics (stomach upset and diarrhea), cefdinir came accompanied by fatigue, headaches, and moodiness (in increasing quantities as the weekend wore on). Erin did rally to sing in church on Sunday morning, after having fallen asleep on the floor in her room waiting for breakfast. Since the sun was shining (finally) I drug her out to the Aggie Soccer Complex to watch some college games in the spring 7 v 7 tournament, and as long as she could prop herself up against me, she felt okay.

ASIDE: one cool thing happened to make the afternoon even more brilliant than the sunny skies we sat under. The Lady Aggies came out for their 3:00 game and were doing a usual warm up: high knees in one direction, butt kicks in the other. As the whole team jogged shoulder to shoulder towards the stands, Amber Gnatzig, (who is a superstar in my opinion, and who may be even harder headed than Erin Buenger) looked up, spotted Erin sitting several rows up and called out, "look everyone, it's Erin." The whole team (even the ones that didn't know her) caught Erin's eye, waved, and called her name. It did make Erin sit taller for a while.

Today, after some e-mail exchanges, Dr. Parr and I decided to blame the antibiotic for Erin's slump. We've stopped the cefdinir and will fill in the remaining three days with zithromax. Hopefully, "a while longer" will pass quickly and I can have my Erin back fit and full of vinegar.

How Long Could It Last?

February 13, 2008

Often I field the question, "How is Erin doing?" Answering requires some decoding. Does the inquirer mean "How's the cancer?" or are they more interested in her day-to-day health, "Has she avoided the crud that's going around? Does she feel fit and energetic?" or are they just making conversation?

Most times I go with, "She's still stable and currently feeling quite well. Thank you for asking." This year, in particular, with various flu bugs rampant and a lot of other niggling illnesses passing from person to person, people are usually surprised by my answer. They comment how unlikely it is that she hasn't succumbed to the flu that has ripped through our area, laying low even those who took their flu shots last fall.

Yesterday, when Erin came home from school complaining of a sore throat, headache, and general droopiness, I thought the jig was up. Nico and Adam had both missed school with the flu, that according to Elaine came with sore throat, headache, body aches, and a fever. I called the pediatrician's office, who told me that the doctor had left for the day, but he could see Erin this morning at 10:00. I said okay, and crossed my fingers that we'd still be on the early side getting Tamiflu into her system to speed her recovery. I thought to myself, "Well, I knew avoiding the flu wouldn't last forever."

This morning, Erin didn't seem any better, and I was waiting for the fever to pop. I drug Erin to the doctor with a promise of no pokes for blood counts. When Dr. Parr walked into the exam room, he noted the "sitting on mom's lap" symptom, the "curled up like a ball" symptom, and the "thumb near the mouth" symptom. Three for three on the doc's quick inspection of whether a child is actually sick or not. However, after an exam, he decided that Erin's sore throat was one sided, probably indicating sinus drainage, and that she seemed more like a kid with a bacterial infection than the flu. We left with a prescription for Cefanex rather than Tamiflu, and I answered my own question of "How long can it last?". . . "a bit longer."

As long as we are on the question how long can it last, I want to mention that today is the twenty-fifth anniversary of Walter's and my first date. He made a very romantic evening of it, lo those many years ago, and stole my heart. I have always thought that celebrating Valentine's on the 13th rather than the 14th was a blessing because it allowed us to give a little jab back at the greeting card industry (independently celebrating our true love, without having to do it on the actual date they picked, but still being able to take advantage of a plentiful supply of readily available chocolate). After children, it was also a lot easier to find a baby sitter for the 13th than the 14th. Only later, when practicality almost trumped romance, did I think maybe he should have waited until the 15th, so we could get our cards and goodies at reduced-price, after-holiday sales.

Anyway, I'll tell you how long it could last. Walter and I agreed to an (implicit) sixty-four year contract when we married. We promised to stick together for the first sixty-four years before we did any renegotiations. We're not even half way yet, and although we have faced things as a couple that we never expected (think of the last five-and-a half years if I've stumped you on this one), we are more committed today than we were on our wedding day, and I am thankful every day that neither of us has to walk alone.

Heading to Georgetown

February 8, 2008

I have floated Erin's eyeballs this week. If low fluid intake had caused her uptick in BUN and creatinine last week (as I suspected), rather than her having weak or damaged kidneys cause by celebrex and cyclophosphamide (as her doctor supposed), I wanted to prove that the more virtuous would prevail. I packed Erin off to school each day with a sports bottle filled with a juice and water combo. I cooked spicy food so she would have motivation to finish her water at mealtime. Uncharacteristically, I even set a good example by downing my whole glass of water each meal. I may have even emptied a beer mug or two to show her that keeping hydrated was easy (I did not explain that beer was actually dehydrating rather than hydrating, lest I confuse her. The point was swallowing more liquids).

I got the faxed results a little while ago and the results are a bit difficult to interpret because the sample was sent to a different lab with different reference ranges. Here's how they compare:

Last week:

BUN 30 which was above the cut off for normal (>25)
Creatinine .8 which was in the normal range but significantly higher than the .5 in early January

This week:

BUN 15 which is below the cut off for normal (>18)
Creatinine .64 which is also in the normal range

I could tell I had done a good job getting liquids in her because I managed to dilute her hemoglobin from 11.8 to 10.6.

After school today we will pack up the soccer van and head to Georgetown for a weekend of kick-it-around. I like our chances in our bracket and full well expect to make it to the second day of play. I like our chances even more of Erin resuming celebrex (No, I haven't gotten a call from clinic yet giving us the green flag, but our engines are revving, and I'm sure we'll get the signal).

Just Okay

February 4, 2008

If you have to pick a time to go off of celebrex after fifteen months, it probably shouldn't be the Friday before the first soccer tournament of the season. It almost certainly shouldn't be the Friday before the first of three weekends in a row when you have soccer tournaments, where you will have three to five hour-long games each weekend.

Going off of celebrex makes most patients say "Yikes, the pain!" just because it does such a good job masking aches and pains that patients forget that they have those issues. In fact, when I googled "discontinuing celebrex" I found that the common feedback from users was just that, or as one user put it: "Bam I am in pain, sluggish, wore down, joints hurt worse then ever, thought I had the flue bug, but figured it out." Erin did fine at the games on Saturday, as long as I kept the Tylenol/Motrin rotation coming, but Sunday, when I cut back, she remembered the second reason why she took celebrex (the first being its surprising anti-tumor effects).

The Mystic '97 had a respectable first tourney, winning one and losing two. All the games were close scorewise (0-2, 2-1, and 0-1), but we actually dominated the run of play in the first game we lost (except for two ugly goals we let in when our defense pushed up too far and went flat). It truly was one of those unlucky games (we missed both a PK and an indirect kick in the six-yard box) when we couldn't finish our chances from anywhere on the field and the other team did. We bounced back in the middle game and played quite well. It was Erin's best game of the day. She marked quite a fast and athletic forward and really didn't allow any guff. In the final game we stayed tied at zero until the last five minutes when a series of breakdowns put the other team's most skilled and speedy striker one on one with our keeper.

Had we won another game, we would have played again on Sunday, but for Erin it was probably better that she took it easy. Erin did watch the AKC championships Saturday night and fell in love with every single dog she saw. Sunday, she didn't feel like doing much: back pain, her left (non-tumor) side hurt, and she had absolutely no get up and go. She continued to unsort the Legos, processed a little email, watched the football game, and except for church and Sunday school that's about all (practically nothing for her). I sent her to school this morning with more Tylenol and a drinks bottle for hydration and got an email from the teacher a bit ago that said "So far so good."

I can't wait for the blood draw this week so we can resume the celebrex and get back to normal.

Spoke to Soon

February 1, 2008 (2nd Entry today)

I received news of Erin's blood chemistries drawn yesterday and had the disappointing news that Erin's BUN was up to 30 and that her creatinine had doubled to .8. Dr. Russell told me to take Erin off of celebrex for a week or two and see if we can get the numbers back down to where they need to be. The entire family is complicit in this situation, because rising BUN and creatinine when taking celebrex means she's inadequately hydrated. It's much harder to get her to drink enough when its cold outside, and frankly we've (I've) just been asleep at the switch.

Keep Breathing

February 1, 2008

The You Tube video on the left bar was put together by Mark Dungan of Fort Worth as part of his no-holds-barred strategy to find a cure for neuroblastoma. We care about the children in this video and wish none of them had to suffer.

Look for Erin towards the end (right before the three minute mark).