Wednesday, 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."
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.
Tuesday, 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.
Friday, 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):
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.
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.
Friday, August 10, 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.
Wednesday, 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.