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Sunday, September 30, 2007

Merry Christmas!

September 30, 2007

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

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

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

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

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


































































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

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

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

I'll let you know when we have results.

Friday, September 28, 2007

I Dumped the Sea Monkeys on My Head

September 28, 2007

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

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

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

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

Moo: "The sea monkeys."

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

Moo: "In my hair."

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

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

Wednesday, September 26, 2007

Just Being Erin

September 25, 2007

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

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

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

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

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

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




Friday, September 21, 2007

Not A Medical Update

September 21, 2007

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

I don't know how I feel about that.

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

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

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

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

Tuesday, September 18, 2007

What's So Funny?

September 18, 2007

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

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
















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

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

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

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

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

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

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

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

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

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

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

Thursday, September 13, 2007

A Use for Willie

September 13, 2007

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

On with the update. . .

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

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

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

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

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

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


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





Monday, September 10, 2007

300 to 1 or Don't Be a Cow

September 10, 2007

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

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

This month, September, is Childhood Cancer Awareness Month around the country and in Brazos County. If you do nothing else all month, you should do something to spread the word and help the cause. Here are some ideas:
  • visit a pediatric cancer patient's website (here is a good place to go: Kids Cancer Crusade), and leave a word of encouragement;
  • donate to Alex's Lemonade Stand (supports all pediatric cancer), or better yet, make plans to hold a lemonade stand yourself;
  • give up your lunch and send what you would have spent to Lunch for Life to (supports neuroblastoma research). Ask your friends and co-workers to do the same;
  • Support these dads (by going to Loneliest Road) who are riding their bikes coast to coast to raise money and awareness for Neuroblastoma treatment and research;
  • Write your Senators and Representative and ask them to support the Conquer Childhood Cancer Act of 2007 (S. 911 and H.R. 1553) and to help get it out of committee and onto the floor of the chambers this month (this will authorize $150 million for research over the next five years);
  • Watch this video (http://www.youtube.com/watch?v=AGS4yE5v9rM) and brain storm ways you can help;
  • Stop by the CureSearch website and read about even more things you can do to help in the fight against childhood cancer.
Thank you to all who have already helped in this cause. Every bit you do makes a difference. When I was a child, everyone I knew who had cancer died. We didn't even say the "C" word. Today, because of heightened awareness and a better flow of research dollars, many can be saved. Nevertheless, it will take millions to find a true CURE.

SOME FACTS ABOUT PEDIATRIC CANCER:

Childhood cancer is the number one disease killer in children.

Neuroblastoma is the most common cancer in infancy.

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

Every 16 hours a child with neuroblastoma dies.

There is no known cure for relapsed neuroblastoma.

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

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

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

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

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

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

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


video

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

Wednesday, September 5, 2007

What should I say?

September 5, 2007

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

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

Sunday, September 2, 2007

Sixty-Minute Girl

September 2, 2007

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

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


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

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