Just Being Erin

September 25, 2007

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

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

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

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

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

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

Not A Medical Update

September 21, 2007

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

I don't know how I feel about that.

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

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

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

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

What's So Funny?

September 18, 2007

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

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
















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

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

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

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

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

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

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

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

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

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

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

A Use for Willie

September 13, 2007

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

On with the update. . .

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

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

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

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

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

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

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


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

300 to 1 or Don't Be a Cow

September 10, 2007

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

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

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

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

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

SOME FACTS ABOUT PEDIATRIC CANCER:

Childhood cancer is the number one disease killer in children.

Neuroblastoma is the most common cancer in infancy.

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

Every 16 hours a child with neuroblastoma dies.

There is no known cure for relapsed neuroblastoma.

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

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

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

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

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

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

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




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

What should I say?

September 5, 2007

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

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

Sixty-Minute Girl

September 2, 2007

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

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


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

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

Teacher's Pet

August 29, 2007

Erin almost burst waiting for school to start. I had visited with her principal last week about bathroom options now that Erin was on cyclophosphamide and not supposed to "hold it" all day. During the meeting he let me in on the TOP SECRET information about who Erin's teachers were going to be this year. When I told Erin who she would have, she was singularly unimpressed, having (apparently) figured it out months ago. She had wanted a particular teacher (the inestimable Mrs. Kutzenberger), and Erin "knew" that Mrs. Kutzenberger wanted her. Voila! In Erin's mind it was a done deal.

Following that conversation, I had to broach the delicate subject of what would happen since she and Mrs. Kutzenberger already gee and haw together so compatibly. I didn't want Erin to find herself on the receiving end of taunts or name calling like "teacher's pet" or "brown noser." As I tiptoed around the topic, not wanting to hurt her feelings or spoil her relationship with her teacher, it finally dawned on her what I was trying to warn her about. She said, "Oh you're talking about being the teacher's pet."

"Yep," I lamely replied.

To which she said, "Of course, I want to be the teacher's pet. You'd think everyone would want to be the teacher's pet, wouldn't you? Think of the advantages."

Mom: "I don't know. When I was in school, kids could be pretty mean about the ones the teachers favored."

Erin: "Even if someone called me a name, I wouldn't care. You'd think people could figure out that it really is A LOT better for the teacher to like you than not to like you."

Problem solved.

So, after playing four soccer games this weekend, school started on Monday morning. Erin hopped into the clothes she had laid out the night before, woofed down breakfast, and headed out the door laden with classroom-sized bottles of hand sanitizer, antiseptic wipes, a soccer ball for recess, a lunch box (a one-day-a-week privilege), and the Erin grin plastered on her face. From all reports, the first day went as planned (at least in Erin's mind), with the added bonus that she got to see her big buddies Chet and Lea Ann Edwards that evening (side note: Walter and I showed up to an Edwards fund raiser Monday evening without Erin. Chet was so disappointed and insistent that Erin was always invited to anything he was involved in, we felt compelled to fetch her). Erin went to bed extremely happy Monday evening, basking in the feeling that everything was right with the world.

Somewhat unfortunately, things lurched to a stop on Tuesday, when I had to pull Erin out of school around 10:00 for a trip to Houston for clinic. Fortunately, things looked quite good to the nurse practitioner Shari Feinberg, so I think yesterday will be the last day Erin will have to miss until October 2, when she is scheduled for tests and scans. Erin had gain another half an inch in height and about three pounds in weight. Her counts were all normal or very close to normal. I will bask in that information and the full flush of Erin's complexion for about two or three weeks until scanxiety starts to creep in.

Thanks for stopping by.

Perfect 10--In Photo and Film

August 21, 2007

When you are ten years old, nothing is impossible. You're not too old to cry or too young to laugh. The world is your oyster. You can hurl yourself around like a cannonball in the Crimean War.


Or beautify yourself into a glitter girl.


You can hang with your buds,


But you grab firmly to the solitary moments, as well.



Sometimes you are the helpful "older" kid.



But just as often you serve as the helpful "little" sister (Here she is helping Davis with a brain transplant experiment).


You live for sports.


But you also live to hold nature in your hand (that's a Madagascar hissing cockroach for those of you with smaller monitors).


You bring flair to everything you do, even your chores.



Even when you rest, you look busy, or at least your hair does. . .


I wish I were ten years old.

Does Anybody Really Know What Time It Is?

August 17, 2007

When I took Shakespeare in college, Professor David Stewart introduced me to "time" in a way I had never before considered. I already knew about relativity, always chuckling with the recollection of the Einstein anecdote about how sitting for a minute on a hot stove seemed like an hour, but sitting on the lap of a beautiful woman for the same minute seemed like a second. For Stewart, there was even more to time than relativity. Each play we read had multiple aspects of time: how long it took to write it, how long it took to read it, how long it took to act it, how much time passed for the characters in the play. Time sometimes proceeded linearly and sometimes skipped around, though it could also cycle and double back on itself. For magical plays like A Midsummer Night's Dream, time is suspended and ceases to exist, at least temporarily. Then, of course, there were those Einsteinian aspects of time--did the reading/watching/listening seem to fly by quickly because you were so engrossed or did it drag from lack of appeal. I'm sure I have forgotten the more subtle points of Professor Stewart's lecture.

What sticks with me is that all these ways of looking at time seem to apply to the neuroblastoma world. We count time passing through linearly accumulating milestones (months/years since diagnosis/transplant/relapse, how long a particular treatment works, how many birthdays and first days of school we get to record). We have the grind of each day--sometimes the mundane stuff like laundry and grocery shopping and sometimes the stress, tedium, and terror of hospital stays. We watch the dragging drips of toxic IVs, yet wonder why the days with our precious babies fly by too fast and slip from our grasp. Days at clinic blur into each other like we are caught in Bill Murray's Groundhog Day. On the one hand, we don't rush because we want to savor each moment and linger in the delight of our children, just in case we don't get to keep them forever. At the same time we jam more into the lives we live, just in case we don't get to keep them forever.

All this became crystal clear when I read the following entry, called "Save Room in the Bucket" on Spencer Dolling's website (those of you who do the daily tour of the cyber NB world know that Spencer's dad Steve is the most articulate and irreverent of all NB bloggers):

I suppose it’s time for the post holiday update where I tell everyone about the wonderful vacation and all the things that we did and make people generally jealous or inspired or whatever. Not just the “Isn’t it nice that the cancer family got away for a couple of weeks” but more along the lines of “Oh my God, why can’t we have vacations like that?”

So I should natter on about the 15 knot breeze on the flat water rounding Shark Spit with the sun low in the western sky and the sails full and the boat nicely heeled and try to express in words what it feels like when you know in your heart that you’re living one of life’s great moments and it doesn’t get any better. And the clams in the lagoon off Manson’s Landing where we dug our limit of 225 in ten minutes with our hands and didn’t even disturb more that 4 square feet of sand. And the stunning solo anchorage in Grace harbour where the boys managed to find the perfect rocks for us to jump from. And rock crabs with white wine. And watching the boys jump off the top deck of Al and Sue’s boat with 4 life jackets and 2 boat cushions on so they hit the water like wine corks at terminal velocity. And the biscuits - the ones that went with the chowder of prawns and clams and fresh cod. Swimming in the lakes. Kayaking. The little dog named Pepper. And Foster’s octopus which stayed with us not quite long enough to be given a name before going back to the deep. And just sailing from one cove to the next with those perfect hours where Spencer devoured the new Harry Potter, only disturbed occasionally when there might be a cry of “Dolphins!”

But I won’t. Because it would be misleading. Life isn’t entirely perfect.

Sometimes it’s only moments of perfection otherwise encapsulated in crap.

Because in reality we didn’t even know if we were going to get away or not. The days before we left, Spencer had fever and was in hospital getting transfusions and IV antibiotics. On the way up, we stopped in Powell River. Foster and I went shopping while Tracey and Spencer went for blood work so we could be sure that platelets were stable enough for us to disappear into the wilds of Desolation Sound.

Ten or twelve days of perfection, and on the way back, more fevers and back pains and a stop in Nanaimo hospital for more IV antibiotics. And it would be nice if the antibiotics were fighting infection. But they were only a precaution. The cultures were negative. The pain and the fevers are the cancer. And when we got home it got worse. Much worse. Tylenol and codeine weren’t cutting it. Spencer asked to be taken to hospital in agony. IV morphine did the trick.

And today, there was a bone marrow biopsy and a new plan. And the pain is better managed. And new chemo is flowing. And tomorrow, Tracey is organizing a barbeque, because there are too many kids and parents on 3B stuck inside their rooms on beautiful summer days. And fear is replaced by hope and we move forward.

So the real trick is to encapsulate the crap and let the enjoyment of the moments triumph. Otherwise, you’re just stuck in a bucket of sh*t.

And you really need the bucket for the rock crabs and the octopus.

Steve

And so in a single entry Steve Dolling has captured the essence of what I think I have been trying to do with Erin's home page.

That's not to say that I actually ever realized what I was trying to do. Certainly it has morphed considerably over time (there's that word again). Oh, at first it was easy. Erin was sick. Very sick. Our friends and family wanted to know how she was doing, if she was in or out of the hospital, if she could have visitors, and what was coming up next on the schedule. I complied with very "informative" entries. Here's the first one ever (actually it was an email that we sent which we later incorporated into the website. At the time, I had no concept that anyone who didn't already know us would have the slightest interest in Erin's illness. In fact, I thought most people who received the email would trash it without reading it):

August 2, 2002

Walter and I have put together an email list for Erin's many friends and family members who want to keep up with her progress. We are also in the process of setting up a web site. We will be sure to let you know when that is up and running. Thanks to you all for your many, many messages and very sweet and special thoughts! If you are someone who already receives too much email, just let me know with a reply, and we will take you off this list. (If this email is a shock to you because you have not heard that Erin was sick, email me and I will fill you in)

We got home from Texas Children's on Tuesday evening (July 30). Wednesday and Thursday were kind of rough days with fatigue and vomiting. Erin has lost about 10% of her weight in the last week and a half. Today we seemed to have turned the corner. She is still pretty tired and not too hungry, but at least she is keeping food and drink down. The doctors have been very pleased with the way Erin has tolerated her first round of chemotherapy. They are being very aggressive (so being sick is expected), because they really think they have a chance of getting rid of the tumor and keeping it away.

Erin had blood work done yesterday. All of her counts were in the low normal range, which was a positive sign. That means that Erin's activities are currently not restricted. We expect her blood counts to dip by Tuesday or Wednesday next week. Then she will have to be a lot more careful about who she is around for a week or so (this is normal for someone in this regimen). She takes an injection everyday to help build up her white blood cells.

We go back to the clinic in Houston on Tuesday for a check up and more blood work. Currently, we are scheduled to begin the second round of chemotherapy on Thursday, August 15.

Then, Erin made it through treatment and began acting like a kid again. Through the home page, I worked desperately hard to convince myself that the neuroblastoma chapter of our life was written and behind us. I envisioned Erin's story as an inspiration to others facing treatment. I experimented with humor and adventure tales, with the facts dropped in for leavening. I was fiercely proud of the poise and ferocity that Erin had exhibited during treatment and wanted everyone to know the spark that was Erin. At some point (prior to relapse in March 2005), I became convinced that my mother was the only one reading Erin's website. I didn't have much to say about Erin's health, and it felt a little too self-centered to presume that anyone really cared about the exploits of a healthy girl and her family.

After Erin relapsed, I had a legitimate reason to continue updating, but no desire to go back to "just the facts, ma'am." In addition, for most patients in the world we live in, relapse underscores the question of time. How much do you have left and how do you make the most of it? The home page became a mix of treatment specifics mixed with a healthy dose of "us." As time passed our nightmares of counting the days until the end failed to materialize. Erin responded to treatment. Currently, daily chemo is more akin to the daily vitamin than to the agony-inducing treatments that could be our lot. At many points during the last twenty-one months of stability, I've wondered why I write, and more importantly why you read.

My motivation. Hmmm. Some days, I write so that Erin can read her story through my eyes when she's an adult and has cancer behind her, an elaborate baby book, if you will. Other times, I write so that there will be something to hang on to if she's ever gone. I write for me, because I need to vent, entertain, teach, exhibit my love. I write because people keep reading, though I really have no idea why. I write because another chunk of time has passed, and Erin is still my treasure.

So I will continue my balancing act--enough medical news for the truly concerned, some cute pics and other relics usually confined to baby books, occasional musings for my own benefit, a little advocacy and awareness building, and humor when it strikes me. In essence, I will capture Erin's time and repackage it for anyone who wants it. And who knows, perhaps her biographer will find it useful. You may not have heard, but Erin is not supporting Hillary Clinton's run for the Presidency. When I ask her what she had against Hillary, she said, "Nothing. It's just that if Hillary is elected than I can't be the first woman President of the United States."

Since you've made it to the bottom of this mammoth entry, drop me a line and tell me why you stopped in and/or why you read all the way down. I'd value your comments.

What I Did on My Summer Vacation, A Back-to-School Essay

August 9, 2007

I wish I were the kind of person who had an eye for composition, stood in the right spot, AND had a camera available for capturing and chronicling the Buenger Life. Unfortunately, the easily distracted me often becomes so involved in the happenings of the moment that the perfect photo opportunity passes before I notice that I could have snapped a shot worth keeping. The rest of the time, I might (emphasis added) recognize a prime photo moment, but have no camera at hand.

So, I'm left with a spotty photo album--blurry photos captured of people and objects too close or too far away. Thumbing through the collection reveals multiple shots over the years showing the candles already blown out and small, uniformed athletes on various playing fields who may or may not be one of my children (they are too far away or there's too much glare to really tell), and of course, multiple copies of those ubiquitous shots of Christmas morning, Easter baskets, and vacation landmarks--all the same; all boring. Until I got a camera that embedded to correct date on each print, I spent hours staring at those vastly similar shots taken in different years, trying to recall if Davis got that red bike for Christmas in first or second grade or if Erin wore the same Easter dress two or three years in a row (Erin did help me out a little as she got older by losing her hair to chemo when she was five and later when she was eight, making it much easier to retroactively identify which year I had snapped the shot).

All this rambling, by way of introduction, explains the vacation photos I am about to post. Out of eighty plus photos taken over two weeks, few are what anyone would consider stellar, and fewer still capture the highlights of what we did.

They include the obligatory girl shot of my side of the family (three generations of Luquette women). I'm sure Emma (on the far right) will learn that full-tooth Ultra-Brite smile soon enough. She has already managed "lovin' the camera" with her eyes staring directly at the lens like the other model-wanna-be's in the picture.


Unfortunately, I failed to take any pictures of my nephew and (new) niece's wedding celebration which was a gross oversight on my part since they planned it all themselves, including the stylish five-story wedding cake with bold fuchsia and mango icing with bold geometric patterns to replace the traditional white. Since everyone associated with the wedding were as stylish and happening as rock stars, it's a shame I failed to capture any of it for memory.

Not only did I miss photo ops at the wedding, I left Dallas with only three pictures of anyone from the wedding or the follow-up cousins reception the next day. All of them were of my still-single oldest nephew, Matthew. Although he is quite handsome and photogenic, my imagination went flat setting these up.

We moved on to New Mexico to continue the vacation. There I captured Davis and Erin's shadowed and distracted faces in front of a vacation landmark, in this case the remains of a kiva near Los Alamos in Bandelier National Monument park.


Here's also one of Erin looking as bleached out as the cliff walls filling the entrance to a cave dwelling nearby.


This one of Erin and Carla and Larry's rescued dog, Scarlett, actually turned out pretty well (at least you can tell what it's supposed to be), but people tire fairly quickly of cute kid/pet pics and we have tens, if not hundreds with a similar theme. The rest of the photos from the Santa Fe/Bandelier area failed to make the cut to prime time blogosphere.


I've already mentioned that I failed to capture the most exciting moment on the trip (see the Report for details). I did snap Erin and Jackson and Ruidoso Downs, waiting for the next thunder of ponies to sweep by in front of them. (Are you locals wondering how Erin's school buddy ended up in "Rui" as he calls it? No, we didn't fold him into Erin's duffle, as tempting as it would have been to have someone Erin's age along to keep her entertained. As chance had it, Jackson was visiting with relatives out in the mountains the same week we were there and his Aunt and Uncle were gracious enough to share him with us for the afternoon.)


And finally, here's one called "Waiting for Erin" where Walter captured a whole stable of race horses waiting their turn for Erin to go down the row and give each a nose pet.


So what did I really do on vacation? Besides my usual dark chocolate chip and pecan cookie with my coffee every morning (what could be more indulgent than melting chocolate with the heat from coffee?), for me the highlight of the trip (don't laugh) was reading the seventh Harry Potter book out loud as a family. As you might imagine, this feat took most of our drive time and a non-trivial portion of our mornings and evenings in New Mexico. I found the book most satisfying, not just because of the excellently gripping story J.K. Rowling crafted, but because our family has grown up with Harry. Davis was nine when the first volume came out, but eschewed reading it a full year or more before diving in. Erin fell in love with the books at age five when she had so many long days and nights in the hospital. When we resumed vacations after her initial treatments, we took Harry and company along on the highway with us. We have read all of the books out loud and listened to them on CD. . .more than once. Given that this may be the final real family vacation (Davis had originally signaled this summer was a no go for him, but relented in the end), bringing Harry's story to a finish all together, page by page, was both poignant and memorable. We really didn't care that our friends and family thought it strange that we discussed the possibilities and quandries facing Harry, Ron, and Hermione over dinner or cocktails, or that we each wanted to spin our personal theories about what would happen next. Strange, huh? And it doesn't make a very good photo, either.

We're Back

August 8, 2007

We found our way back to Bryan yesterday. Erin's one month labs were due today, and I am proud to report that Erin took the venopuncture in stride. Even better were the results. I didn't publish the results of the last blood draw we took right before we departed, but I have to say, that at the time I was quite disappointed. I had expected robust numbers and ended up leaving for vacation with the distinct impression that I needed to guard Erin from germs of every shape and form. With an ANC of 1600 (only a little above the prescribed isolation level), I figured we'd arrive back in Bryan with sniffles, a fever, or worse.

Didn't happen. In fact, we all had a healthy vacation, in every sense, and Erin's hemoglobin, white blood count, and platelets were all normal this afternoon. It looks like the predictions about cyclophosphomide being incrementally better on every dimension might well turn out to be true.

I took time today out of the catch up routine (you know unpacking, laundry, shopping, reading back issues of the local paper, and of course eating regular, non-restaurant food) to update the Davis Report. I will try for a better and fuller re-cap of Erin's take on vacation when I swim to the surface again in the next few days. In the meantime, I will leave you with a photo of Erin with Uncle Dave (who Davis is named for) and Aunt Norma.

Silence

July 26, 2007

The Buengers are now breaking off internet contact and leaving for parts known and unknown. Don't expect any Willie tidbits or cute pics until we return.

In years past we have bolted from town to escape the heat. This year we are looking for sanctuary from the rain. Surely the New Mexican desert/lower Rockies will accommodate.

Vacation from Vacation

July 22, 2007

I can't tell you exactly what we have done this week, but we deserve a vacation. Okay. Maybe I exaggerated. "Deserve" may not be the exact word I was looking for. Earned a vacation? Merited a vacation? How about the honest truth? We want a vacation, and we're leaving whether you give us permission or not. Actually, Walter is safe saying he earned a vacation, having spent all of June and a good part of July working through and finalizing his department budget (including salary adjustments). It's me on shakier ground, having finished up summer school at the beginning of the month to devote myself full time to the job of Erin's chief social secretary and chauffeur until the fall term starts on August 27. This included planning and executing the following activities (since Thursday): Carpenter's Kids tour of the local television station and trip to the park and splash pad, an afternoon of volunteering at the church, a splendid dinner party at the Tjoelkers, the release party for Harry Potter 7 (how do you like Erin a.k.a. Tonks?), hosting Erin's buddy Aaron for swimming, Legos, and spy play, whooping it up at the rodeo (including participating in the calf scramble), and attending church. She decided to take it easy today, so I got some weeding done in the yard.

Anyway, whether I deserve it or not, we're off. To keep all you would be burglars flummoxed, I won't tell you our top secret plan to drive to Dallas on Thursday after Vacation Bible School, leave Dallas on Sunday, picking up Davis in Amarillo en route to Santa Fe, and spend the next ten days tromping the mountains of western New Mexico.

"Wait," you say, "Why is Davis in Amarillo?"

He's not yet, but he only wants to miss one Saturday of work at Maddens, so he is staying in town until Sunday morning, when he's catching a flight to Houston and then another hopper to Amarillo.

"Wait," you say, "If you are in Dallas and there is a direct flight from College Station to Dallas, why is he flying to Houston and then Amarillo?"

"Good question," I respond. "American Airlines wants $650 for that puddle jump, so we had to fall back to plan B. That the one-way flight, even through Houston to Amarillo, costs much more than Davis will earn working on Saturday is beside the point (at least to Davis, who apparently is not paying for the plane ticket to join the family on vacation)."

"How about medical news?" you ask.

"So far, so good," I reply, "I couldn't tell any difference between the etoposide CBC and the cyclophosphomide CBC: hemoglobin a little below normal, white count and ANC hovering right at the low end of normal, and enough platelets to burn."

"So, what's up between now and Thursday?" you ask politely, even though you are not all that interested.

"Vacation Bible School, soccer practice, a trip to Snook for PPR Day celebrations (I know, it's a few days late, but who really cares anyway?), horse back riding, piano lessons, and another trip to the UPA lab for blood counts." Can you guess who needs a vacation from their summer vacation?

Water, Water Everywhere

July 17, 2007

Eleven Observations Comparing Cyclophosphamide with Etoposide:

11. Etoposide is easier to spell.
10. Etoposide dose is 21 days out of 28; cyclophosphamide is everyday.
9. Etoposide is refrigerated (even when you travel); cyclophosphamide sits on the counter.
8. Etoposide is an ugly brown gel cap about 3/4" long; cyclophosphamide is a perky aqua blue tablet smaller than a mini M&M.
7. Etoposide is given at 6:00 a.m. rain or shine, school day or holiday; cyclophosphamide is given with breakfast.
6. Both require avoiding St. John's wort (are any of you thinking this is a great loss?), but etoposide requires avoiding grapefruit, while cyclophosphamide allows grapefruit consumption.
5. Cyclophosphamide requires an uptick in fluid intake (more water, juice, or if you think creatively, like Erin does, more juice bars, ice pops, Lil Scribblers, watermelon, cantaloupe, grapes, and so on).
4. Etoposide is a topoisomerase II inhibitor, related to the toxin found in the American Mayapple; Cyclophosphamide is a nitrogen mustard alkylating agent. What does that mean? Both are toxic agents that kill cancer cells, but they use different mechanisms.
3. Long-term use of etoposide sometimes leads to secondary leukemia; long-term use of cyclophosphamide sometimes leads to transitional cell carcinoma of the bladder.
2. Etoposide has allowed Erin's hair to grow back (somewhat thinly); hopefully, the same will be true of cyclophosphamide.
1. Etoposide has worked keeping Erin's tumors in check for the last 20 months; cyclophosphamide has worked keeping Erin's tumor in check for the last seven days.

Conclusions: Almost too close to call, though cyclophosphamide might edge out etoposide on most factors (except spelling and having a week off now and again). We will reserve judgment until we get twenty good months out of the new guy! In the meantime, we will head to the local clinic tomorrow to see where her blood counts will fall on this regimen.

So, in the spirit of adding more fluid into her life, Erin has spent the last week mostly in the water. Last Wednesday, she swam at Bill and Sue Burchill's with Adam, Nico, and Ian, and her new friend Bill. Thursday, she swam at the A&M Outdoor Pool with Carpenter's Kids. Saturday, the Mystic soccer girls came out to the lake for a swim and cook out. They meant to play soccer, but no one was willing to get out of the water long enough to put shoes on, so there they all floated, boated, jumped, and splashed, while the parents sat dockside enjoying water substitutes.

Erin also had her pal Clayton Sue Benson from Fort Worth in for Camp Buenger on Saturday for several days (and nights. . .is this reading like I haven't had as much sleep as I would prefer?), Those two girls' incorporation of water into their daily routine encompassed a range of activities. Many of them involved concocting strange brews, tonics, lotions, and potions (I think in anticipation of Harry Potter and the Deathly Hallows, scheduled to appear, then disappear from booksellers' shelves next weekend). They also built a model of the Gryffidor common room with craft sticks and sculpey (which as best I can tell had no relationship to water, but built on the HP theme) and followed a multistep process (that incidentally, according to the strict rules of wandsmanship, couldn't be started before midnight) for creating working wands. Check them out with "wand at the ready"!



Lest we forget the importance of hydration, Erin and CS insisted we spend the last afternoon at the Adamson Lagoon. There they made full use of the water slides, lily pad hazards, and other floating obstacles placed around the pool. They also managed to snag Nico while we were there for one last night of fun and fancy, with a three-person sleep over (I almost wrote a "three-way" sleepover, which might have crossed the line on this family-friendly home page).


So, that's it for now. See you at the water fountain.

So, I Promised You the Fun Part, Too

July 12, 2007

We snuck out of town on Sunday afternoon to get ready for scans that started at 7:15 on Monday morning. How did we get ready? By heading to the Kemah Boardwalk, otherwise known as The Family Spend-o-matic, for the evening, we guaranteed that we would all be tired enough to sleep through the alarm on Monday morning. For a low, one time price of a couple of jillion dollar, each person in your group earns the right to wear a stylish wrist band. Wait there's more. Proud displayers of wristbands, FOR NO ADDITIONAL PAYMENT, earn the right to stand in line at every attraction.


Some, like the train, required the heart of a lion to actually ride. Note the white-knuckled grip and brave, but terrified looks on these young passengers faces:

Others proved more sedate, as demonstrated in this short video of the Inverter. The blurs in the front two seats are Nico and Erin. I call this video, "Famous Last Words: Mom, What Does Inverter Mean?"




Adam didn't actually trust any of the rides that Erin and Nico wanted to ride, but eventually agreed to go on the Aviator. . .once:


He would not ride Pharoah's Fury with them, and who can blame him? We ended the evening, after a tasty meal at Joe's Crab Shack and more opportunities to have their guts shaken and stirred, with Erin, Nico, and Adam prancing and cavorting like water sprites in the dancing fountain.




On Monday, the children traded their blue outfits for green ones, and (at least for Erin) their amusement park wrist bands for hospital ID tags and a contrasting-colored, take-home-overnight IV.


Their reward for patience through, the IV placement/blood lab, the five-hour GFR test and the echocardigram (9 hours total)?


Well, an apple and a movie. Just after we paid (the outrageous) parking fee and pulled out of the parking garage to head to the theater, my cell phone rang with news that Erin's potassium (you remember, it was dangerously low in December?) was now dangerously high. "It was probably an error, but could you just drop back by the clinic for a re-check?" With dragging feet (remember it was 4:00 now, and we had been hanging around the hospital since 7:05 a.m., which begs the question of why someone had not tracked us down some time in the previous nine hours when we were just hanging out having blood draws every hour or two. Must have been late breaking, hot-off-the-press news.), we returned to clinic. . .where believe it or not, the nurse couldn't get the IV to work and told us to go home that we we try again tomorrow (I guess Erin wasn't in that much danger, after all). That's when we made a break for it, just in case someone with more authority rescinded the order. We made it to Ratatouille just in time (not that big of a stretch since it was playing on four screens with a new showing starting about every other minute or so).

The decision to bail turned out sound. As I mentioned in the last post, the re-done blood chemistries on Tuesday showed everything, including potassium as normal! After another long day at the hospital on Tuesday, we headed back to Bryan, arriving just in time for Erin to change into soccer cleats for practice and pickup games against boys teams. She had just enough energy on Wednesday to go to piano lessons, visit her third grade teacher (Jennifer Steen) and her very cute one-year-old Matthew, and swim at the Burchills on Wednesday. What did she do today? Headed out to Carpenter's Kids for an all-day excursion. Go figure. She had been in training for a long day all week.

You Can Breathe

July 11, 2007

For those of you holding your breath for news on Erin's scans, feel free to breathe. Erin made it through all of the various tests and scans on Monday and Tuesday with almost universally good news:

GFR (kidney functioning): normal
Echo Cardiogram (heart functioning): normal
Bone Scan: normal
CT Scan: unchanged from previous scan on April 4 (stable)
Blood Chemistries: normal
Complete Blood Count: adequate

One blood number came up a little high (TSH--Thyroid Stimulating Hormone), so we will keep an eye on it to make sure that Erin's thyroid was not somehow damaged as a result of all of the treatment she's had. While the number was on the high side, the clinical signs to look for if she had hypothyroidism (lethargy, lack of growth, weight gain) are completely absent, so we will watch and wait.

I will update you with the fun part and some picture later, but now I have to go pick figs, before it gets too hot. Before I leave, I would like to thank Davis for updating the site on Sunday and letting everyone know what we were doing. I slipped out of town without doing it myself.

A Short Vacation

Erin and Vickie are taking a trip to Houston for scans and will be back Tuesday. They took along Adam and Nico and made a visit to the Kemah Boardwalk. It had a variety of carnival rides, but none as appealing as the Lighthouse Lift. We are all looking forward for them to get back to town and for Erin to continue with clean scans.

Count von Count

July 4, 2007

Erin had monthly clinic last Thursday and passed with flying colors. Her height and weight were proportional, and Dr. Parr couldn't turn up anything worrisome (this mom could tell that Erin was feeling very well, partly from her vigor, but also from the fresh crop of inch-and-a-half-long hair that has filled in the spaces between her longer hairs that the ravages of last winter's serial illnesses left). On Monday she started her last cycle of etoposide. Pending stable scans and doctor recommendations next week, she will switch to cyclophosphomide tablets. We hope to continue getting good results for many more months.

We waited until Monday afternoon to get the results of her blood labs:

WBC: 3600 (a little low, but not dangerous; mainly she has a lagging lymphocyte count, which makes her a bit more vulnerable to viruses.)
ANC: 1900 (low normal; okay ability to protect against bacterial infection)
HGB: 11.3 (low normal, good enough to spark Erin's engine)
PLT: 330 (just where it needs to be)

The chemistries were also pretty good, though I suspect Heidi Russell will have something to say about her elevated BUN (31, when 7-18 is the normal range; this is something we watch because of the celebrex). Her AST and ALT (measuring liver function) continue to hover above normal, indicating (my interpretation) the constant irritation of treatment and its effects. Her sodium, glucose, and bilirubin were a shade low as well, but we haven't received a call from Houston with instructions or admonitions, so I guess we'll check them again next week and ignore them until then.

Other than the clinic appointment Erin is just doing the usual stuff. She has fit horseback riding in between the rain twice since we returned from DC, had a piano lesson, and wiled away an afternoon painting pottery with Carpenter's Kids from church. Katie Lockett spent the day and night on Friday, and they used much of their time together to don costumes and plan and put on shows. Mary Beth and Rachel (twin granddaughters of our next door neighbors and infamous kicker-outers of Erin's front tooth) arrived yesterday for a few days. We are all waiting (some not so patiently) for the Tjoelkers to get back from their vacation. We misted Adam's slugs for them while they were gone, but given our sorry stewardship of the Tjoelker's triops last summer, we'd like to have our friends back before we let them down again. Besides, Nico and Adam will need a couple of down days before we nab them for the scanarama next Monday and Tuesday.

I read a post today on the ACOR (American Cancer Online Resource) neuroblastoma site from my friend Angela Thomas (see her blog for her daughter Christi) who was updating the group about the progress Dr. John Maris of Children's Hospital of Philadelphia was making with the tumor cell line he grew from Christi's tumor (at the Thomas's request he named it FU-NB-06). He is studying it to see what made it so aggressive after it acted so gently and cooperatively for so long. This type of research is definitely interesting to me, because it might provide answers for us as well, since Erin's tumor (so far) has been compliant and indolent, but we know has the potential to turn on a dime.