Merry Delayed Christmas

12/27/06

Merry delayed Christmas to everyone. We certainly enjoyed the peace of the season and all of us hauled in more than our deserved share of largess. Davis served as liturgist in the morning service on Christmas Eve and read the lesson at the family worship on the afternoon. Erin both sang and rang handbells at that service, as well. I jumped in with my trombone for the prelude music at the evening service, but we all took a pass on the midnight service, so we could be at home at a decent hour.

Walter and Moo had to do their performances at home, since they missed out participating at church. Moo rendered a rousing version of "Twas the Night Before Christmas," and Walter read the Polar Express (managing to do so without crying, which is more than I can say for yours truly, when that is my Christmas Eve duty).

Christmas will continue all week as various aunts and cousins arrive on their own schedules. What could be better than taking the Twelve Days of Christmas literally?

Erin attempted a blood draw yesterday, in hopes of officially being released from the Potassium Tablet Regimen (I say "officially." Unofficially we stopped the dreaded K on Saturday because it caused so much tummy upset. I just thought it was doing more harm than good for her to lose her meals to vomit or loose bowels and to punish her with stomach cramps, as an added bonus.). I was also eager to see if the indicators of infection were back in line with where they should be and if her immune system still needed a boost.

Unfortunately, Erin's veins chose yesterday to be particularly small and rolly. Her favorite nurse could not hit the vein after three tries, so we gave it up, did a finger stick, and left (I believe this torture is going to cost me bathroom furniture for the doll house--there's always a price). With a finger stick you can get a read on white count (low, but okay, showing no infection this week), hemoglobin (slightly low, but okay), and platelets (robust, probably because she hasn't been participating in her usual dangerous activities).

I am still concerned about Erin's diminished appetite and general lack of energy. She seemed pretty normal at Nico's Bunko party yesterday afternoon, but then ate very little at dinner and slothed about until bedtime. This would probably not be concerning to some people (in fact a calm rather than frenetic child might be a welcome relief), but a cancer parent often interprets anything out of the ordinary (and sometimes ordinary things) as a sign that something bad is happening inside. Erin has scans in two weeks, so this concern may be the usual pre-scan anxiety (remember I have written about this before). Relapsed neuroblastoma patients don't usually get twenty-one months of progression free, high quality life. Still, worrying will not keep cancer away nor stop it in its tracks if it's growing, so I will set the worrying aside, unglue Erin from whatever she is doing in her room, and go outside to enjoy the brilliant sunshine and unscheduled day.

What Sugar Plums Dance in Your Head?

12/23/06
What Sugar Plums Dance in Your Head?

The Buengers have myriad answers.

Erin:

• Personal Energizer batteries (it's a bummer running out of steam just when you get to good part)
• A visit from Santa (who may or may not be a real guy, but who's willing to chance it?)
  
• Fewer pills (hard to tell the difference between the viruses and the medication side effects)
  
• That Chet Edwards' delayed throat surgery (January 15) comes out all right, and that he doesn't drive J.T. and Garrison crazy with the summoning bell she suggested

Davis:

• Sleeping in (no explanation needed)
  
• Grades he deserves (is there any other kind?)
  
• That Dean Forman drinks a hefty stein of eggnog for Christmas, then logs on and makes a fatally blundering move in the correspondence chess match

Walter:

• That he regain his stamina (no joke here, just a sincere wish to put the Erin-born viruses behind him)
  
• That he enjoys Davis and Erin and the holiday (Again, no joke here)
  
• All problem faculty from the history department volunteer to teach at A&M's campus in Qatar
  
• No more destructive, wall-paper eating dogs
  
• No more garbage-eating dogs who ingest so much extra stuff that their feet don't touch the ground when they nap on their sides
  
• No more dogs who are almost blind and definitely deaf who wander off after dark and don't come back unless someone stands in the cold and dark calling their name for a half hour

Luke:

• Someone to chew his food (preferably steak tartar) for him,
  
• While rubbing his belly,
  
• And not complaining about the wonderful odors slipping from between his back legs

Uma:

• No one but her getting attention
  
• A closer garbage dump (the walk is getting a little onerous)
  
• A tiara

Willie:

• Someone putting a giant chew stick (12 feet tall), full of tasty wooden, plastic, and glass morsels right in the living room
  
• A daily walk with strategically placed piles of leave desperately needing someone to pee on them (another reason not to jump in random piles of leaves)
  
• An adversarial bunny residing in the nearby tank farm willing to wait coquetishly every morning at 6:00, cotton tail erect, to lead him on a merry romp, and thus delay his real walk by fifteen minutes

Vickie:

• The soccer dream: She shoots. She scores.
  
• A dark chocolate chip and pecan cookie warmed on the lip of the coffee cup each morning before the children awake
  
• Healing for all the children with neuroblastoma and peace for their families

Other than Willie, do you think anyone else's wishes will come true? I'm counting on it!

Power of Positive Thinking

12/21/06

When Walter and I came home last night at 9:30 from dinner out, we found Erin playing poker, perky as a bunny. It's been a while since I used perky and Erin in the same sentence.

She told me it was the power of positive thinking. Davis had told her to tell herself, "I feel good. I feel well." over and over again until it came true. That, a little pixie dust, some prayers, and a Z-Pak will work wonders.

IVIG Aborted

12/20/06

Well, the short version is that Erin ran a fever on Monday while the nurse was doing vitals to prep for the IVIG (intravenous immuno globulin) infusion and they could not go ahead with it. Pause...Erin just wandered in and asked me if I was going to write about the "stinky" day we had on Monday...Resume. I don't think I'll give you the whole run down about how the triage nurse had it on her mind to stuff us right into the hospital without passing go and didn't really want to hear my non-medical opinion that Erin had her port out last March and didn't need to be cultured or hospitalized when she ran a fever. The question I asked was, could we have the IVIG infusion with a fever or should we just go home before we made other people sick. We were only there four and a half hours before we got an answer. . .go home. We didn't need to hear it twice and were on the elevator before you can say scat. We grabbed Davis and his meager basket of essential stuff and headed down the highway.

The longer version would include the story of the Erin who hasn't felt well since the last update. Until today everything pointed towards viruses that just needed to run their course. Today, Dr. Parr found an ear infection and heard a little rattle in her chest. So, Erin started a Z-Pak, and I think she feels a little better already.

It has been so strange to see our little trooper so down and out. She hasn't eaten much in a pretty long time and is lethargic. Her cough could wake the dead, and she is breathing more shallowly than usual. I can't wait for her to feel better so we can get back to our normal routines, another of which was thrown off last night.

We had waited to put our Christmas tree up until Davis got back from college. Yesterday he and Erin picked it out together. It is by far the largest we have ever had. Davis had to do battle with it to cut it, to carry it home, and with Walter, to get it set up in the living room. All the while I made Erin rest so she would feel like putting on ornaments in the evening. We sat down to dinner, where Erin ate eight bites of green chile chicken tamales, got the chills, recorded a temp of 103.1, took a Tylenol, and promptly fell asleep. It put a damper on the festivities.

Today (post Z-Pak) she is feeling well enough to complain of boredom and ask when Walter and I are going out so she can watch television. Things must be getting better!

Hopefully things will get better quickly and I can post a livelier update before Christmas. In the meanwhile, all of our thanks and appreciation go out to our friends who have given up their lunch for Erin. She has earned 314 ornaments thanks to your generosity. I wish I could express my gratitude to each of you in person. It truly resonates the spirit of the season when people busy with their own joys and families can take the time to think of those like Erin, and actually go to the effort to do something to make them better off! Thank you, thank you, thank you.

P.S. We at least had the good news on Monday that Erin's potassium levels had improved and were now merely low (not extra low). Perhaps by next week she can be off the K-tab for good.

Immuno Compromise?

12/15/06

Medical Update--Still good on the cancer front. It's the normal germs that are getting us down.

Erin always fools me. Like the combat soldier that says "Bring it on," she gets up and attacks each day anew. Somehow, over the last month, I let her mesmerize me into believing that she wasn't that sick. I kept telling myself that her cold symptoms were improving, that surely the stomach cramps and lethargy form the gastroenteritis were about to wind down, that she always gets a cough this time of year. Taken in combination with her immunocompromised body, it just isn't true, as her blood count numbers told us yesterday.

White Blood Count--2200 (this is low and has been this level for weeks with no improvement)
Absolute Neutrophil Count--1400 (this is low, but not too dangerous. If she entertained a bacterial infection, she could probably fight it off)
Hemoglobin--11.4 (this is a bit low, probably a result of virus)
Platelets--199,000 (this is normal, but much lower than she has been running. Again a sign of general ill health)

Plus, her blood chemistry was a bit wonky. Especially the potassium. You never want to scan the lab report and and see LL next to one of the numbers. That means Extra Low, which is why Erin has added potassium tablets to her medical regimen, at least until she recovers. Why does potassium drop? Poor diet and diarrhea. Well, that explains that and also why she has lost five pounds in the last month and why we've had to message her cramping calves at night..

Dr. Russell also tested the three components of Erin's immune system. Surprisingly the IGM, which measures the ability of the digestive system to fight off microorganisms was normal (perhaps finally recovering), but both the IGG (which makes up 80% of the body's immune system) and the IGA (not a grocery store) were low. On Monday, Erin will have an infusion of immunoglobulin, which is like getting a plasma transfusion of thousands of people's immune components mixed together. We're hoping this will boost her back to good heath and help her make it through cold and flu season without further difficulties. Nobody really wants to spend their first day of Christmas holidays in the clinic for five or six hours, but since we had to be in Houston to pick Davis up anyway, we thought we might as well get it done with.

Here's to a healthier holiday!

One non-medical update: Erin thanks everyone who has given up lunch for her. She has received 199 ornaments in the week since I posted the request. That is awesome, and we couldn't appreciate it more. Neuroblastoma is a complicated disease, and we do not know enough about it. Every lunch is one step closer to discovering the silver bullet, which is what we are pinning our hopes on.

One More Thing

12/7/06

Just one more thing to add to yesterday's entry. If you have four minutes, take a look at this video of Spencer Dolling. He has had neuroblastoma as long as Erin has. Erin and Spencer are the lucky ones. They have great lives!

Left You Hanging

12/6/06

Didn't mean to leave you hanging. A variety of things have intervened that kept me from updating, but count that as your good fortune as it means more chapters in the saga...

Check out The Davis Report for Chapter 4--Matt and Davis Do the Microplex

Chapter 5--The Household Changes Sizes

Part of the surprise of Thanksgiving was that my sister, Katherine, didn't make it down to Bryan. She succumbed to a violent stomach bug and stayed at home in Sacche weathering the storm. She did, however, send my niece Emma to enjoy the holiday festivities. Emma stayed when the rest of the family went back to Dallas on Sunday afternoon, and Erin and I got to enjoy "the little parrot." Emma is at a very cute age (22 months), where her vocabulary is expanding exponentially, and she likes to try out every word she hears (since I save cursing for very special occasions, this has not been a problem, so far). For a variety of reasons, it looks like my mom and I will have Emma at least through the 15th, and perhaps through Christmas. What I have forgotten about caring for toddlers could fill Reed Arena, but I remember the main rules: love 'em, feed 'em, rest 'em, change 'em.

Chapter 6--'Tis the Season to Be Germy

Sharing and caring. That sums up Erin's philosophy of ordinary childhood illness. Don't have a germ? Get one. Have an extra germ? Pass it on to someone who might not, through no fault of their own, have enough.

Erin's head cold lingered through the week after Thanksgiving, but blood sample evidence, taken on that Thursday, indicated that she was getting better (ANC up a full 1000 points from pre-Thanksgiving levels to 1700). I, on the other hand, found myself host to an increasing number of cold symptoms (sniffles, phlegm, sneezing, lethargy), none debilitating, all irritating. The tiredness and under-the-weather feeling persisted for both of us. Erin even had the nurse call home on Friday with a request that I pick her up early. Of course, when I got there, she had learned that all her buddies were staying at the park after school, and she was no longer rearing to go home. A little head cold didn't stand in her way to see the Live stage production of Scooby Doo on Saturday afternoon either.

Saturday night, Sunday, and Monday were a different matter. Erin somehow picked up the stomach bug circulating in the neighborhood, despite multiple layers of protection from the carriers. We stopped giving her Celebrex when she stopped eating, since it tears the stomach up pretty bad if not taken with food, and Erin wasn't willing to risk eating anything that was going to come out the other end in an unrecognizable format. True to form, she shared with me the gift that just keeps giving.

Through it all, Walter has stood like a rock, but today it looks like chinks are beginning to appear. He stayed home this morning to read in his chair. I wish him a quick recovery. I should have warned him to beware red heads bearing gifts.

Chapter 7--Putting the Semester to Bed (short and sweet)

Those of you used to the circadian rhythm of the semester may have noted that the goings on in the Buenger household of the last couple of weeks have coincided with the end of the academic year. Walter and I have been grading like beavers, holding students' hands who now wish they had studied and attended more when they had the chance, and listening to litanies of unsolvable personal crises.

I also had to confront cheaters.

I can't give you the details but let's just say that the Aggie Honor System Office is now on my Buddy List and my speed dial.

Chapter 8--What's Next?

The Buengers are ready to embrace the Christmas season, as soon as we can get it all together. Erin has another week and a half of school, with a routine clinic visit to Houston on the 14th. We will drop by Davis's that day and pick up anything he won't need during finals but wants to have in Bryan over the holidays. Walter and I should be done with finals and (fingers crossed) grading before then. Davis's has four finals, including Organic Chemistry on Saturday morning, December 16. He'll be done on the 18th, and we will retrieve him then and officially begin Christmas!

Chapter 9--Lunch for Life

It's that time of year again!

PLEASE 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 Code is 21147) 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!

A Multi-Chapter Story

11/28/06

So much time and so many events have passed since my last entry that I have to do this in chapters. . .

Chapter 1: Alabama Folly

Walter and I got away for a long weekend before Thanksgiving--the first time together and alone since Erin relapsed in March 2005. Our prime time, A-list destination? Birmingham, Alabama. . . to a history convention. Does the man love me, or what? We traveled uneventfully, and only tempted fate once. That was the night we decided to walk twenty blocks from our hotel to a restaurant, when it looked like waiting for a taxi would take too long. Did I mention we had walk through (poorly lit) industrial Birmingham? Did I mention we had to cross a bridge over an impressive set of railroad tracks (designed to carry iron ore into the city and steel products out, and perhaps to serve as a hobo outpost)? Did I mention how stupid we thought our choice was upon later reflection? Oh well, at least we had the brains to have a taxi ride home.

After that, we had no place to go but up. And up we went. . .to Walter's college roommate's house in Tuscaloosa. Moses Mortimer "Mort" Swaim and his lovely wife, Minunie, and their daughter Monnish live within blocks of the University of Alabama ("ROLL TIDE") in an 1835 plantation mansion that takes up most of a full block of the city. The whole Swaim family were gracious and lively hosts. Friday night we hung out in the ballroom (how many folks do you know that hang out in their very own ballroom), fully equipped with deluxe sound system with three pedestal mikes, Peavey speakers, a sound board, a full trap set plus a variety of other rhythm instruments for the less rhythmically gifted (tambourine worked for me). Mort played along on the drums with the oldies (I'm sorry. . .classic rock tunes) on the sound system, while the rest of us kept time, danced, and sometimes sang into the microphones. A life-sized Elvis statue accompanied us on guitar in the background (and if I ever get pictures, I promise I will post them). If I remembered any of the rest of our trip, I would tell you about it.

Well, I do remember one thing. Mort picked us up in Birmingham, and we made it home before Minunie did. When she walked in, she had spent the day at Silver City gambling the slots. She walked in (I'm not making this up) a $16,000 winner. The kitchen had signs that this was not the first time this had happened to her!

Chapter 2--While the (Gumby) Cats Are Away

Erin had an extremely big time with the mom and dad unit out of the way. She hung out with her buddy Noah on Thursday and Saturday and spent the night with the Tjoelkers Thursday and Friday night. She was completely amazed (and I might add impressed) with the lifestyle differences at her friends' houses. The Tjoelkers, for instance, did not make her eat oatmeal either morning for breakfast, and apparently made her a lunchbox lunch without her having to find the school menu and prove that what was being served was inedible.

The biggest news was that her parents chose the weekend of the Bryan school district's UIL championship to leave town. Erin was competing in a new event this year, Oral Reading. She chose "The Gumby Cat" by T.S. Eliot and "The Mischievous Dog" by Dylan Thomas. According to Erin, she barely made it to the finals because she forgot to do her introduction and busted headlong into the poems. In the end she took first place and was happy to celebrate with her friends Aaron Wunneburger and Tori Saenz who tied for first in Music Memory. Considering there are sixteen elementary schools in Bryan, with three students competing in each event and only four events for fourth graders, I would say that Mary Branch did really well. They may even have done better than those three mentioned, but I didn't get any more out of Erin on the topic.

Chapter 3--Our Return

Our return trip to Bryan went off smoothly, though we arrived to find Erin suffering from a pretty crummy head cold. She had had the sniffles due to seasonal allergies for at least a couple of weeks before that. I was not excited about having blood work done, knowing full well that a cold could take her white count down far enough so that we would have to go off chemo (perhaps for as long as a week). There was also the added disadvantage that she would have to get a venal puncture this time rather than a finger stick, because we needed to measure BUN (blood urea nitrogen) and creatinine to see if the celebrex was still causing problems. Erin squeaked by with an ANC of 700 (below 500 was the trigger). The BUN was still elevated, but had not gotten higher, so we (Erin's doctor and I) have decided on waitful watching (or is it watchful waiting?) to see if it will come on back down over the next round or so.

The head cold has continued on, with the addition of nightly fevers. Davis explained this process to me. When the body doesn't have a strong enough immune system to fight off a virus, it heats up (runs a fever) in hopes of burning up the viruses that it can't clobber with lymphocytes. Erin and I both celebrated especially hard last week about the decision to have her port removed last March. The port would have solved the problem of the vein stick on Wednesday, but would have landed us in the hospital for at least a three day stay over Thanksgiving. Talk about something to be thankful for!

I'm not through yet, but I have to leave the office for the second shift, which starts soon. I haven't decided whether to add Chapter 4 here or in the Davis Report. Whichever it is, it probably won't be until tomorrow or Thursday.

Dodge Virus

11/15/06

Somehow Erin managed to dodge Nico's virus, even though he spent Wednesday night with us, traveled with us to Houston and back on Thursday, and sat by Erin at Ian's birthday dinner on Friday evening. It's a good thing, too! Erin needed every bit of he strength and energy she could muster to play four games of soccer last weekend, plus sing in a trio (would have been a quartet if Nico had been there) at church on Sunday morning. The Chilis played their hearts out, advancing to the finals on two shut outs and a 1-0 loss. Sundays' championship couldn't have been any tighter (2-1, Red Hot Chili Peppers over the Golden Angels). I have added those photos to the photo page. I also updated the Davis Report (remember the French pronunciation) yesterday.

Mountain of a Week

11/10/06

What a mountain of a week! Last Saturday Erin's soccer team finished off the regular season with a 2-0 win over the second place team, leaving them undefeated with only two goals scored against them for the entire season. Tomorrow is the end of season tournament with 150 minutes of soccer spread over three games--plus a championship game on Sunday if they do well on Saturday. Go Red Hot Chili Peppers!

After a short post-game rest last Saturday, Erin showered and got dolled up in new Aggie duds. We met Chet, Lea Ann, J.T. (10), and Garrison (9) Edwards at the MSC. As part of the festivities, Chet introduced Erin to former President and Mrs. Bush. You may or may not know that the Bushes lost their daughter Robin to leukemia when she was four years old. Perhaps because of that or perhaps because they are genuinely kind people, they both took time to visit with Erin, even to the point of setting their dinners aside briefly. I received pictures of the evening (both at the Presidential buffet and at the game in the President's box), but I had to wait. Becky Gates (married to A&M President and soon-to-be Secretary of Defense Bob Gates) and Lea Ann Edwards served as Erin's photographers, and you may not have noticed, but they both had very busy weeks this week. Luckily, they found my pathetic pleas through email and send me at least one photo before they erased their cameras' memories.

During the Presidential buffet, Chet took Erin and his sons around visiting with various knots of people, mostly receiving best wishes for the upcoming election. Later, when I asked Erin how it felt to be introduced to so many different people, she showed a little bit of pre-teen-a and said, "Well, it was like this," and then she put on her mimicking voice and postured, "Aren't you the cuuutest little thang! Oh, what a cute picture that would be. Smile. Look this way. Smile. Oh your so cuuute. Smile. Look at the camera." I told her we didn't have to do anything like that again if it bothered her and that in all likelihood the photo takers were really only snapping pictures of Chet. She looked at me like I was an idiot and said she didn't mind smiling for a photo. In fact, it was one of her favorite things to do.

We eventually stopped politicking and sat down to eat. Garrison sat between Lea Ann and me, and Chet sat between J.T. and Erin. At some point in the meal, between rapidly flowing conversation and clattering forks, Chet looked over and noticed Erin was eating everything on her plate, except her piece of roast beef. Without missing a beat, he reached over and cut her meat into bite-sized pieces for her and without a word about it, continued his conversation. Now, I don't think cutting other people's meat is necessarily a skill you have to hone to be a good Congressman (in fact, it might bother your colleague if you cut up his meat for him at a Congressional banquet), but it sure told me that Chet was a clued-in dad, and not someone who just gathered his family around him for the photo op.

It was a great experience to get to know the Edwards family. Lea Ann is not only beautiful, but smart as a whip and very down-to-earth. Chet took a large supervisory role over the kids, giving us plenty of time to chat about a whole range of topics. The boys fit Erin's notions of fun friends, and it was really amazing how quickly and completely they took to each other.

The game was splendid, except the outcome. The kids watched the game (on the field, on the big screen in the end zone, and on the tv right above their heads), played cards during the slow parts, and spent a good deal of the time cutting up. Luckily, the really serious fans were sitting pretty far down the way. The man sitting directly next next to them (the rumor passed through the box that he owned a 54,00 square foot house in Beverly Hills. NOTE BENE: that's smaller than a WalMart, but large enough to divvy out 10,000 square feet to each of his five children, including the toddler and the 13 and a half month old) didn't seemed to mind them too much. He even took the time to teach them some card tricks. During the second quarter we took the children down to the decks so they could actually experience the crowd and the feel of the game. We watched half time from the first deck, and Erin has been humming the Aggie War Hymn ever since. She was also particularly amazed at how the band just turned itself into a marching ATM. I think Erin's only real disappointment of the evening was that we rode the elevator down from the box at the end of the game instead of running round and round the ramps to the bottom.

Those of you who know the Buengers personally, know that the magic of the week didn't end on Saturday night. We all stayed up late celebrating on Tuesday night as Chet led the way for incumbent Democrats to hold their seats and for Democratic challengers to win races across the country. I don't think I've seen Walter this happy since he became department chair, and certainly not this happy over an election since 1992. Erin and I figured that Chet was fairly confident in his race or he would have spent the last Saturday before election day campaigning or smoozing or both. The real surpise of the week, though, was that Chet, who had to be in Houston on Thursday for a personal matter, agreed to meet us at Texas Children's Hospital that morning and tour the facility. He was eager to learn what it was like for a child with cancer and what the prospects were for research funding for doctors in the field. I think Erin's doctors impressed him and vice versa.

The medical side of Erin's clinic visit also went well. Her hemoglobin and platelets were solidly normal. The white count and ANC were unimpressive, but better than they had been the last two weeks and just fine for week three of a three-week chemo cycle. Her AST and ALT numbers had crept up a little, probably a signal that she was fighting off a virus (which would be consistent with the nasal sniffles I've been hearing in the mornings and evenings). The only concerning number in the whole set of counts was her BUN. Yes, that is something that doctors actually measure in your blood. It was high, but not dangerously high. Celebrex can raise the BUN, but it is also a indicator for general health and nutrition. I'm guessing that as we have climbed the mountain of a week, we may have depended too heavily on granola bars and jerky, and not brought enough fruits and vegetables along. Now that I think about it, the snack bar in the President's box wasn't overly laden with cumquats and pomegranites.

Anyway, the bottom line was that Erin will start the eleventh cycle of oral etoposide in about a week and continue taking Celebrex every morning and evening. We will have our BUN measured again in two weeks I think I will start tuning into late night television or the Shopping Network to try to find one of those BUN reducing gizmos. It could only help.

Glimpses of Erin

11/7/06

Vignette 1--Erin and mom walking the dogs, chatting, and enjoying the beautiful weather last week.

Background: We eat fairly healthily at our house. Not absurdly healthy, but fairly healthy. Oatmeal once or twice a week, no sodas, limited breakfast meats. Walter has also made a big push to eliminate Trans Fats from our diet. For some reason (maybe because her parents dropped several yummy foods from the grocery list solely because they contain "partially hydrogenated vegetables oils," ie. Trans Fat), Erin is more afraid of Trans Fats than she is of cancer. We're not even allowed to say the words Trans Fat in her presence. It's TF or nothing.

Erin: "Mom, I have a question."

Mom: "Shoot."

Erin: "When I get married . . ."

Mom looks quizzically and wonders where this is going.

Erin (continuing): "And my mother-in-law invites us all to Thanksgiving dinner at her house. . ."

Mom still has no idea where this is going, but she really hopes that the scenario plays out some day, because it will mean that Erin has survived.

Erin: "Will dad come, even if my mother-in-law cooks with TFs?"

Mom, trying to make sense of this whole conversation and wondering how Erin ever got the idea that avoiding artery-clogging foods would be more important than attending a family holiday gathering: "Erin, your father loves you more than he hates TFs. Of course he would go to Thanksgiving at your mother-in-law's house."

Erin: "Would he eat?"

- - - - - - -

Vignette 2--Same scene, a few minutes later. The conversation has wondered to whether dad would ever retire.

Erin: "Do you think dad will ever retire?"

Mom: "Maybe."

Erin: "When he does, do you think he'll be like uncle Dave?"

Mom, thinking what a kind and interesting person Uncle Dave is: "I hope so."

Erin: "So, he'll have all white hair, learn to play golf, and grow a round, little belly in front?"

Mom corrects that impression, then goes on to give convoluted answer about retirement: "Well your dad will probably step down as department head in a few years, then later, he'll stop teaching, but he will probably always do research and read and write books. I doubt if he'll every play golf, and I can't really picture him with a round, little belly in front."

Erin: "Oh, so he'll be like one of those guys that sits alone in a dark corner, reading?"

Mom, thinks to herself: "Not a dark corner. He'll have a three-way bulb or maybe a compact fluorescent bulb, or maybe both. And he definitely won't be alone. I'm sure he'll have a dog at his feet and probably one in his lap."

- - - - - - -

Vignette 3--Riding in the car with mom (Mike, this one is for you.)

Mom has had a hard day and a hard week. She has had intractable, hard-to-figure out problems coming at her from her neighborhood, her family, and her students. She's mumbling to herself that she can't solve everybody's problems.

Erin looks up from the backseat and asks what's the matter. Mom doesn't want to share the burden or give any specifics. She just says, "Oh, sometimes I get into trouble thinking I have to control people's lives and solve their problems. I need to keep my eyes on my own paper (as Bob Leslie always said)."

Erin gives me a sweet smile and says, "You should just cut back on the number of people whose lives you control. You're really good at it."

Mom, thinking what a meddling fool she is, looks up in the rearview mirror. Erin winks and says: "Wisdom from the mouth of a child."

For those of you waiting to hear about game day with Chet. I am going to hold off for a day or two, in hopes that his wife Lea Ann sends me some of the photos she took of Erin, Chet, and their boys, J.T. and Garrison. I will preview that entry, by telling you that we had a wonderful time, despite the score of the game, and that our bubble about what a wonderful Congressman we have has not been burst.

If you haven't voted today, log-off your computer right now and go out and do it!

Reacon, Alcon, and Batcon

10/31/06

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

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

Here's how the conversation goes:

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

Erin: "I'm Reacon."

Nico: "I'm Alcon."

Adam: "I'm Batcon."

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

Erin: "No."

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

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

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

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

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

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

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

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

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

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

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

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

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

Bumping Along

10/24/06

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

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

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

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

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

Celebrating with Celebrex

10/20/06

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

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

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

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

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

Erin is Fine

10/17/06

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

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

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

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

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

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

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

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

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

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

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

Dining By Candlelight

10/5/06

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

"Just in case what?" I asked.

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

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

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

Impromptu Matching Quiz:

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

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

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

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

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

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

Little Miss It's All About Me

09/29/06

Someone in my family (think red hair) chided me last night for posting an update that failed to mention the star of the web site (think red hair): "Mommmm, it's my website. It's supposed to be about me."

I'm thinking, "Nine year olds should not be jealous of sharing their web space, especially with their most-beloved dog." I'm just about to move in and take corrective action (something like, "Oh don't be so spoiled, I've used plenty of bits and bytes on you, not to mention pixels."), when I look up and over at her. She winks:

"Gotcha, mom."

I did get a couple of messages after last night's posting asking for a cast of animal characters in the household. So for your entertainment enjoyment:

Luke (named for Luke Skywalker) is a very old (14+ years) yellow lab. He is the most expensive free dog I have ever owned. Most recently he contributed to the family by pulling a paw nail off and bleeding copiously throughout the house, sticking mainly to carpeted surfaces.

Uma (named, not by us, for Uma Thurman) is a 7 year old Welsh corgi (with papers), given to us by the widow of a friend. This woman parlayed our love for her and her husband into an opportunity to escape from the hell of living with a spoiled brat dog, who barks at everything, including all amorous activity among the household's adults. I am quite sure the ghost of Bob is having a great laught at our expense.

Willie (named for William Marsh Rice) is a 10 month old Rhodesian ridgeback, lab, terrier mix. He brings the worst qualities of those three breeds and packages them in a 60 pound puppy body.

Kitty Muffin (who really knows what a cat is named?) is a 3 year old tabby who is Erin's, but who has been banned to the house next door (my mother's house) by Walter who doesn't tolerate the catness of cats very well.

Alexander (who really cares what a fish is named?), the bata, is our only problem free pet. Having said that, I'll probably find him floating when I get home this afternoon.

On the medical front, Erin's counts remained fairly high this week (normal hemoglobin and platelets; satisfactory white counts). We are also trying to train a new classroom of students and her teachers to remain vigilant about hand washing. The best contribution I can make on a daily basis is to keep Erin as healthy as possible. This means washing germs down the drain, eating right, and making sure she gets enough sleep and exercise. These things are all easier in the summer when the weather is warm, and neither Erin nor I are in the classroom. We are trying our hardest, and so far have not encountered any bugs that have laid us low.

Once again, Erin has a busier schedule this weekend than either Walter or me. Her soccer team is playing an exhibition scrimmage during the half time of the Aggie soccer game tonight, and she has a real game tomorrow morning. Her dear friend Katie has invited her to see Peter Pan put on by The Theatre Company tomorrow night, and I am sure there will be begging for sleepover arrangements as well. Sunday, her choir sings at worship. Just to make it interesting, she started practice for UIL oral reading after school yesterday. I am sure glad she can do all these things without having to worry about whether she can keep up with school or not, because it would be really sad to pull the plug on the activities she loves because of bad grade. Just to prove the point, Erin brought home a stellar report card yesterday with excellent marks in all subjects and conduct. Woohoo!

For our close friends who read the website, here is the Davis Report (Required Legal Disclaimer--the following paragraph may contain information that shocks long-time Davis observers. Any and all damage caused because you become light-headed or fall into shocked convulsions from what you read are not my fault, and I will not be held responsible. You have been duly warned):

Davis has adjusted better than any of us thought he would to campus life. He appears to have changed in at least two fundamental ways since we left him on August 20 to fend for himself in undergraduateland: he studies (maybe every day; maybe even for subjects that are not due the next day), and he keeps his dorm straight (and complains that his roommate doesn't). I hear he made a 100 on his first economics exam and (here comes the really scary part) his English writing class is his second favorite class (yes, he is taking more than two classes). One of his papers for English was about the virtues gained from dog ownership, of which patience was prime. He is also playing a variety of intramural sports, and I suspect socializing at least the median amount. He will be home a week from next Wednesday for four days of Fall Break. Given the schedule he has been keeping, I am expecting him to sleep the entire time.

One other note: Thanks to all of you who sent Davis "real mail." He wrote me that since Ryan (his roommate) had so many interesting posters and wall hangings, his own side of the room looked pretty bare. Davis has solved that problem by hanging all of the cards and letters he received on the wall. This includes the one from first grader Adam Tjoelker who wrote HAVE FUN AT RICE, and spelled out Rice by gluing real rice on the page and the three page chronology of a day in the life of Nico Tjoelker. I knew I could count on all of you to help me out of a jam.

Well, I guess that is it for now. Little Miss It's All About Me should be satisfied (if she ever reads this. . .I don't allow her on the internet, unless it is for a school assignment). I hope you plan on having as relaxed a weekend as I do. Enjoy the first weekend of fall and take care of the ones you love.

Jilted

09/28/09

This probably falls under the heading of Details about the Buengers I Don't Really Need to Know, But Might Be Fun Anyway. We have a rather rigid morning routine. Walter gets up first, maybe 5:20 or so, dresses, coaxes Luke downstairs, lets Uma out of her crate, and frees Willy from the downstairs bathroom. He walks the dogs down the road in the pitch dark, collects the newspaper, and returns about 5:50 (actually, at exactly 5:50) to start the dog feeding process. At that point, yours truly is almost always still abed. . .waiting.

Waiting for what, you may ask. Godot? For the Iceman to Cometh? For Walter to bring me coffee and bon bons in bed? No, for the last six months, at 5:50 every morning, I've been waiting for Willie. He arrives one of two ways: by banging insistently (noisily, stubbornly, incessantly, , , you choose the adverb that fits) on the bedroom door until I let him in or by plunging through the doorway, up onto the bed, dogpiling on me and licking the ice cream cone he thinks I have stored behind my ear. I cozy him up for a few minutes then roust myself to dole out Erin's morning chemo. Willie eats while I dress, then I walk him the mile and a tenth around the lake, so that he will be calm enough to survive the day without doing something so bad that one of his owners kills him on the spot.

So, there I am, yesterday. It's 5:50. No Willie. 5:51, 5:52, 5:53. No Willie. I hear Walter bumping around in the kitchen, mixing doggie kibbles, opening the can, arranging it all artfully in their bowls. Where's Willie? I think to myself, maybe this is the day. Maybe Willie has grown up. Maybe he is setting aside his rambunctious puppy ways and is ready to join the family as a full-fledged, non-remedial, non-probationary dog. I dressed quickly and headed downstairs to tell him what a good dog he was. I found him laying there, head up and cocked, looking first at me and then at something else, something he is guarding between his front paws. I discover he has not given up his bad dog ways. I have, in fact, been jilted. Our morning tete a tete, our daily rendezvous, has been set aside for someone else. A tree frog. I was dumped for a tree frog. A now dead one, at that.

I picked it up, while it was still in one, non-bleeding piece, tossed it in the trash, and reclaimed my puppy, code named "No No Bad Dog."

Oh well, they grow up so fast. Why rush the process?

A Jar of Erin Fortitude

09/22/06

Everything was great at clinic yesterday. We will start round 10 of oral etoposide on Monday and scan on October 19. Erin is feeling very well, and Walter and I along with the medical team are working as hard as we can to keep this trend going.

I did have a follow up conversation with Erin about the horse show last weekend. It crossed my mind at bedtime the other night to probe a little into Erin's state of mind, riding into an arena on a horse that had never been in a horse show, much less inside a covered arena, on a day that performance jets had been flying low and repeatedly over the area (and stirring up a number of the horses to the point that they were trying to kick their way out of the stalls).

Mom: "What did you think about the horse show?"

Erin (straight to the point): "I liked it."

Mom: "Were you nervous or anxious or anything?"

Erin: "What do you mean?"

Mom: "Did it scare you to mount up and ride into the arena with judges and an audience watching? Did you think Scamp might panic? Were you afraid you wouldn't know what you were supposed to do?"

Erin: "No, mom, I was born for that."

And so, no stage fright, no butterflies, no pounding heart. Just a casual ride through the gate and around the arena. You can do that if you were "born for it." I love Erin's confidence. She has joined a new soccer team this year. All girls. All girls who could beat Erin's old (boys) team hands down, every time. Is she nervous? Maybe, but she's not letting on.

I'd really like to can some of this courage. Put a jar of Erin Fortitude off the shelf. Then I could pull it out when I wavered. Like I did this week when a girl that all of you would have liked, died from neuroblastoma. Her name was Christi Thomas. She was Erin's age, diagnosed a month or two after Erin. She was smart as a whip and beautiful. She loved art and science and animals (does all of this sound familiar?). Her parents and doctors went to extrmeme lengths to keep her healthy. They loved her from the bottom of their heart. Anyway, if you visit her website Christithomas.com or her parent's blog christithomas.blogspot.com you will read a heart ripping story of a girl who had much in common with Erin, and you will know why we sometimes need a jar (a gallon, a tank, an ocean?) of courage.

Goodsearch

09/19/06

Information Worth Sharing: Several times a day, I call up google.com on my computer to put my finger on a piece of information that I want or need. I just learned today of a better alternative. Instead of googling, if I go to goodsearch.com for my search, the company will donate a penny to a designated charity (FOR ME, AND I HOPE FOR YOU, THIS IS THE CHILDREN'S NEUROBLASTOMA CANCER FOUNDATION). Imagine, people all over the country/world searching the internet and a penny dropping into the bucket each time they do. It's as easy as that.

I don't know how Davis stayed sane doing a weekly radio show for a year. Our hour on A Family Affair last Friday night set me on edge and left me exhausted, not to mention thirsty. Luckily, no one called in with a question I couldn't answer. Let me re-phrase that. No one called in. I hope any of you who listened could tell that Erin had a great, big grin pasted across her face every time she spoke. I, on the other hand, bordered on the panicked look most of the show. Doug only really caught me offguard once. I mentioned that since Erin became sick, my world had crystallized as to what was important and what was not, and that I didn't do things I didn't want to do anymore. Then I panicked. I couldn't think of anything I had actually stopped doing (although now in my off-air office I can think of plenty: I don't pretend to understand when students lie to me, I have little patience for cheaters, I don't agree to serve on committees just to be a good soldier, I don't wear uncomfortable shoes, even if they make my ankles look attractive). So, I said I don't gossip. That probably wasn't true.

Erin had a fine day on Saturday at the BAHA Horse Show. She only rode in one event. Her horse had never been under a covered arena before, so we weren't sure how he would react. He did great, and so did Erin. She came home with a lovely red (second-place) rosette ribbon for 10 and Under Western Equitation Walk Only. I think some kind folks took digital pictures, so her gleaming eyes and toothy smile may appear on the photo page before too long (I did update the photo page earlier with a couple of fresh pictures of Erin with Chet Edwards).

Erin had a pretty social weekend, otherwise. Her friend Clayton Sue from Fort Worth came to town, and she hung out with us at the horse show, out at Veteran's Park for soccer pictures, and back at our house for general nonsense and some top secret science experiments. Unfortunately (for Erin and CS), we had to share her a little bit with her grandparents, so she didn't get to spend the night. They did meet up for Sunday School and church and added Nico to the mix. After CS headed back home, Erin spent the rest of the afternoon with Nico and Adam, so that she wouldn't have to sweat it out at my soccer game (yes, our record is still in tact, 0 and whatever, with no chance of a victory in sight).

Yesterday brought a goodly amount of homework, so we were both a little relieved that the big rain Sunday night had left the fields too wet to practice. The rest of the week looks pretty low key. We will drive to Houston on Thursday after lunch for clinic. I don't expect any surprises. After clinic we will meet up with Davis for a family dinner (in honor of the anniversary of the day yours truly burst into the world completely naked). We may sneak some swimming in on Friday afternoon. Otherwise, we just have school, homework, soccer, and choir.

Willie has really been too bad to write about. We are losing the vanity in the bathroom a mouthful at a time. We have no toothbrushes left in tact. He has shown more than an academic interest in Barbara Tuchman's The Guns of August. He will come when I call. . .if he wants to. More Barbies have lost hands and feet--no doubt their punishment for stealing and dancing. I wish he were cute. At least then he would have redeeming value.

Fat Hand

9/14/06

Walter and I ran down to Houston this afternoon to visit with Davis and bring him his bicycle. This weekend is parents' weekend at Rice (strange timing, huh?), but none of us really wanted to spend the whole weekend wandering around experiencing campus life together (I, for one, get enough of campus life every day when I go to work). We did want to be supportive though, so we took a batch of cookies, Davis's second pillow (how he thought he could do with only one is beyond me), and the bike and went to pay a friendly call. He had bought a six by eight foot rug at a rummage sale for $5, and it really made the room. The only thing he mentioned that wasn't going so well was the complete absence of mail from home (stab me in the heart son o'mine). Here I was, thinking I was hip and happening because I wrote chatty, but not maudlin e-mails two or three times a week, and ALWAYS waited until he replied before I unleashed more news from home on him. What a slip up.

So, bail me out here Erin (and Davis) fans. If you still know how to use a pen or pencil and can afford the cost of a stamp, drop Davis a line at

Davis Buenger
Will Rice College
6330 Main Street
Houston 77005

Don't tell him you know how badly his mother let him down.

Erin had a good week, save one bad incident. Sunday night out at the soccer fields she got stung by some unknown insect, so she has spent the week with a much fatter than usual hand--so fat that she couldn't hold a pencil, so fat, in fact that we had to run to Dr. Parr's office to find out if she was allergic or infected (infection would have been much worse). Luckily??? it was merely an allergic reaction. She has spent the entire week taking a combo of three different antihistamines. She has also had three soccer practices, children's choir, and an afternoon at Nico's. Tomorrow she will bathe horses after school in preparation for the horse show on Saturday where she will ride Western Equitation (am I the only parent in America who remains clueless about the activities their children are involved in?). Tomorrow night is also Erin's radio debut. She and I will be the guests on A Family Affair, Doug Vance's show on KEOS (89.1) that focuses on children, teens, and families. Tune in 6:00-7:00 p.m.

For those of you who read this update for medical news, there is precious little to report beyond the fat hand. Erin feels well. Her blood counts this week were robust (WBC--4900, ANC 3000, hemoglobin and platelets normal) even though this was the third week of this cycle of chemo. She has clinic next Thursday (9/21), and we fully expect to get the go ahead for one more round of etoposide before the October scans.

I'm going to tuck the fat handed one in now. Until next time!

Handwashing: A Priority

09/08/06 (later)

Thank you for pushing those little neutrophils up! Erin's ANC had moved from 700 on Tuesday to 1900 (almost normal) today. We have thus ducked difficult conversations with doctors, etc. and are primed for a regular weekend. Erin immediately made sleepover plans with Jackson, and who knows what else will grab her attention tomorrow! Whew!

09/08/06

In about three hours, I will take Erin to get her blood counts done for the second time this week. Tuesday, her ANC and WBC (germ fighting numbers) were lower than expected. Not so bad as to keep her home from school, but low enough to make handwashing a top priority for the last several days. I am hoping that the numbers were the result of vigorous play at the local Contamination Factory (a.k.a., McDonald's Playland) on Monday or perhaps because she licked the ice at Arctic Wolf Ice Rink last Saturday. Other than the September Sniffles, shared by many in the Brazos Valley, Erin feels well. BUT, if the ANC is not over 500 this afternoon her doctor will DC (medspeak for discontinue) her chemo until it recovers. Aack! (What a weird world I live in that the possibility of not poisoning my child on schedule distresses me.)

We are stumbling along in the early weeks of school. Erin seems to have mastered her schedule quite easily. Walter and I fall asleep earlier each night than we would prefer, but you know we both need our beauty sleep. Davis appears to have become a True Believer about his Rice education. We get cryptic, but almost entirely positive, e-mails from him a couple of times a week--usually with the date/time stamp of somewhere between midnight and 3:00 a.m. Today I got one that started this way:

I just got back from a 6 mile run with JJ. I went back to the book store and boughta few folders, a model kit, and an ether net cable, and when I was checking outthey put in a five bladed razor, four for broad strokes and one for precision.Also, get this, it had a battery in it to make it vibrate. I know--Wow! Asskeptical as I was, I tried it out and it felt pretty nice. I think I'll use ittill it wears out.

I think he has mastered the college thing: find out where the free stuff is and take advantage.

Erin took another step towards political maturity last week. The evening after she visited with Chet Edwards by phone, she wrote up a letter to the editor on his behalf. You can check it out here in its full glory, or just read the text of it:

To The Editor,

Thank you for running my picture on August 30 and helping me raise awareness for childhood cancer. Chet Edwards is also helping kids like me with cancer by co-sponsoring the Conquer Childhood Cancer Act of 2006. Last June, on my birthday, I went to his office in Washington D.C. to ask for his help with this bill. We were scheduled for a short meeting, but he gave us more time and even made people wait while we finished talking. He listened to me and my mother and took what I had to say seriously.

A couple of months later I saw him again on the A&M campus. He remembered me right off and told me he had been reading about me on my website. When he saw my picture in The Eagle this week, he called to check on me and see how I was doing. I think you should vote for him. He is good to me, and I bet he will be good to you, too.

Erin Buenger, age 9
Bryan
822-6552

I hope that Erin's counts are passing this afternoon. The doctor has suggested discussing the possibility of reducing the dose if her counts give her trouble. We are so in love with this particular regimen (so few side effects or quality of life damaging effects) that we would like to ride the wave much, much longer. I'll let you know.

In the meantime, Erin's dance card is filling up. She has signed up for Oral Reading (UIL event) at school, begun children's choir and bells, started fall soccer, and will ride in her first horse show a week from tomorrow. Maybe her ANC just didn't get the word that the pace had picked up and took a slow start to the week. If that's the case, it better get a move on and catch up--preferrably in the next couple of hours.