Monday, October 29, 2007
When I was in junior high, I loved crab soccer. Crab soccer requires an over-sized, over-inflated ball, the hands and feet of all team members on the floor, and their bellies pointed to the ceiling. If you could kick like a Rockette, scramble backwards, forwards, and sideways, or at least if you had enough sense of humor to realize how ridiculous everyone looked, you could really appreciate the game. Now, I hate crab soccer.
No I wasn't recently picked last for the local team.
No, crab soccer hasn't shown up filling air time on ESPN2, scheduled right after adult dodgeball.
No, I don't think crab soccer takes Americans away from "real" soccer.
I hate crab soccer because as soon as the weather changes, and it becomes too chilly to hold P.E. outside, the P.E. coaches at Erin's school bring all the children in to the multi-purpose room and start crab soccer tournaments.
Why, you may ask, is that a problem?
Imagine what happens when forty 10 and 11 years olds wipe their noses (and what ever else you want to imagine) on their palms then place their palms on the P.E. room floor for a rousing game of crab soccer. That's one class of crab soccer players. Now, triple that number to 120 because each class plays three times a week. Now, multiply 120 times fifteen (the number of unique P.E. classes in the school) and spread the yuk that gets wiped to include the detritus on the hands of 5, 6, 7, 8, and 9 year olds, too. Add in the lack of hand washing facilities in the P.E. room, and you can see two things clearly: why Erin has been sick twice in the last eight days and why I hate crab soccer.
It is also why I had a rant with (on?) the P.E. coach first thing this morning. Which P.E. coach you may ask? The one whom I met with before school started and in the second week of school about this very issue. The one whom Walter visited with at Open House in late-September about this very issue. The one for whom I bought an industrial-sized bottle of hand sanitizer to use to combat this very problem, with instructions just to mention when he needed more. The one who thanked me graciously and told me he and his assistant coaches really appreciated using the hand sanitizer to keep from getting sick. The one that kept the hand sanitizer hidden from the children.
As a result, last week after rousing games of crab soccer, Erin had a mild brush with a junky virus that left her tired and achy, but not too sick. This weekend, she met squarely with the disease that doesn't let you stray too far from the bathroom. Luckily, it didn't hit until we stopped for lunch on the drive home from the soccer game Saturday, but the last thing you really want to hear when you still have an hour and a half drive time remaining is for your child to announce that she has green diarrhea.
Besides maintaining an umbilical cord distance from the bathroom for the remainder of the weekend, Erin hasn't fared too badly. We did put all activities scheduled for the weekend on hold, so we wouldn't pass on this precious gift. That gave us ample time to catch up on our to-do list around the house and to put the finishing touches on our spooky jack-of-lanterns. This first one is obviously some kind of apparition from the spiritual world.
The second, if you can't easily tell, is the spittin' image of Willie, down to the cocked ear and insanely agile tongue.
The final shot features Erin with her two new friends and creations. This must be what Dr. Frankenstein felt like:
Monday, October 22, 2007
Erin stayed home from school today. . .almost sick. She had vague symptoms: a little fatigue, slight body and joint aches, almost a headache. Last year's dance marathon with Mr. Virus and Mr. Infection led me to err on the side of caution. Furthermore, since Walter actually was sick on Friday and Saturday, I figured that the full blossom of symptoms would appear as soon as I left for work. By the time I returned from work in the middle of the afternoon, I discovered I was wrong. True, Erin was no better, but certainly she was no worse either.
She was, however, ready for some mom time. Which brings us to Halloween decorations. I can't really explain why we didn't get the decorations up over the (gorgeous) weekend. But here we were, less than two week, heck, less than ten days until the big holiday, and not a window or wall of our house had anything orange or black stuck to it. So I dragged them out of the attic and found the scotch tape. You see, our Halloween decorations are not the kind that come from the discount store, require electricity, and take up the front yard. When Davis was about two and a half, we started making construction paper monsters and other Halloween-y things and sticking them on the walls and windows. When they started looking a little raggedy from being taped up and pulled down year after year, I took the lot of them to the teacher's office supply store and had them all laminated. Each year, when Erin or Davis made a new creature at school, I added it to the collection. Now we look eerie, floor to ceiling, wall to wall. Here's a view of Erin's window (note bene: every window in the house looks like this, but with a different theme. The theme here is obviously home decorating tips by Peter, Pumpkin Eater.):
Erin also brought home the project she created for social studies last six weeks, where she had to create a continent. Might I introduce the eighth continent: Erionalista (no little ego here).
As long as I am exploring the talents and creations of Erin Buenger, you might as well hear how her thoughts unfolded this week.
Conversation 1 (between Erin and mom):
Erin: "Mom, how old was Davis when he got his own e-mail address?"
You can see where this is going can't you? Erin doesn't have her own e-mail address, and apparently is the only ten-year-old in America who us so dispossessed and cruelly punished.
Mom: "I think he got one when he got to Rice last fall."
Erin (not the answer she wanted to hear): "Oh, that's right back when Davis was a kid, kid's e-mail wasn't invented yet."
Conversation 2 (between Erin and Nico):
(Overheard from the backseat of the car on the way home from children's bells and choir last week. The two of them were discussing another choir member who always acts dramatically when she misses a note.)
Erin: "I don't know why she has to fall down and moan when she misses a note."
Nico: "Yeah, I know what you mean. I don't know why either."
Erin: "Look at me. I've hit so many wrong notes this year, that if you stacked them all up they would reach to Houston."
Conversation 3 (at the breakfast table):
Erin: "Do you remember in the Winnie-the-Pooh story when he eats too much at Rabbit's house and then gets stuck in the door as he's leaving?"
Mom: "Yes, what about it?"
Erin: "So, didn't he get stuck leaving, with his head and arms on the outside and his feet on the inside?"
Mom: "That's the way I remember it."
Erin: "And he had to stay there a long time until he thinned out?"
Erin: "Well if he was stuck there all that time, where did he go to the bathroom?"
Mom: "I don't think stuffed animals actually go to the bathroom."
Erin: "Then why do they call him Pooh?"
Remember, I'm not skilled enough to make this stuff up.
Tuesday, October 16, 2007
I have watched Erin since July, when she had an elevated TSH (thyroid-stimulating hormone) level in one of her blood labs. TSH isn't something we test very often, so we really didn't have much to compare it to. A consistently high TSH would indicate hypothyroidism (something that would need daily medication, so Erin could grow properly and have enough energy to do the things she wanted to do).
At the time I gave her doctor a "What?-Are-You-Crazy" look, because she knows as well as we all do, that Erin hits the ground running every single day and never shows signs of hypothyroidism (fatigue, sleepiness, weight gain, decreased concentration, etc.). That's when I learned of the condition called subclinical hypothyroidism. Subclinical means you show no clinical signs of disease. It happens when the thyroid may be damaged (How would a thyroid get damaged? Oh, use your imagination. . .perhaps by radiation to the throat, which happens when you have radiation to your total body), but it compensates for the damage by working overtime, putting even more stress on the endocrine system. People with subclinical hypothyroidism can solve most of their problems by taking medicine, but once they start, they usually have to take it for the rest of their lives.
I so didn't want Erin to have to add another set of daily meds to her kit. Frankly, I was prepared to keep her off the meds, unless the doctor made a very compelling case that she needed them. I mean, what's the point of having a beautiful, not over-stressed thyroid if you think you won't have ample opportunity to use it later in life? Her oncologist wasn't terribly worried last summer, but she did suggest scheduling an appointment with an endocrinologist when we came in for scans, just to have a specialist's view point.
So since July, I have watched Erin to see if I could see signs of a struggling thyroid, and since October 2 (after the endocrinology appointment), I've been waiting for the test results that would confirm a thyroid problem.
They came today:
T4,Free(Direct) 1.12 ng/dL 0.82 - 1.58
TSH 4.415 uIU/mL 0.360 - 5.800
THYROXINE (T4) 6.9 ug/dL 4.5 - 12.0
ANTITHYROGLOBULIN Ab <20>
What a relief! I thought of the punch line to the old joke: "Are you going to believe me, or them lying eyes of yours?
I think I'll stick to my lying eyes.
Friday, October 12, 2007
QUICK UPDATE (TWO ITEMS):
- Congressman Chet Edwards with his whole family on speaker phone just called and spent fifteen minutes congratulating Erin on her student council election results. What a guy!
- Visit this website www.dontalmostgive.org and view the public service announcements linked there. The message really hit home for me. I know what the road to H-E-double toothpicks is paved with. I read or hear something and INTEND to follow up, do a good deed, write a letter, make a donation. Then the immediacy of my life takes over and I almost follow up, almost do a good deed, almost write a letter, almost make a donation. If this happens to you, too, let me give you a nudge. Here is a link to Han's webpage, where Han's mother has written an bang-up letter to our Senator. Take a look. Then, don't almost write--write.
The fifth grade trip to Camp Allen exceeded expectations all around: no mosquitoes, mild weather (well, honestly, it was hot with a breeze, but not oppressive), excellent food (at camp? you may ask, but I understand Camp Allen has a well-deserved reputation for serving tasty meals), a crackling camp evening fire with humor geared to 10 year olds, and a copious amounts of free time. When was the last time a school field trip you attended could claim all of those things?
Erin also made a successful bid for student council at her school. Her speech was too funny--long on earnestness and honesty, short on zip, and definitely lacking in sound bites. I don't know exactly what she ended up saying, but it went something like this:
"I wish I could promise that if you elect me to the student council I will get us recess all day, field trips to Disney World, and better food in the cafeteria, but the student council can't do those things. If you elect me, I will listen to you, like Chet Edwards listened to me went I went to Washington, D.C. and work to make our school a better place."
Despite not overpromising anything, she won in a run-off and was exceedingly pleased. Erin also brought home another stellar report card with week, stayed on top of her homework, scored twice during soccer practice last night, and is improving on her Number Sense practice. In addition, she rode horses, sang, rang bells, and played the piano. Mainly, she has just smiled her way through the week. If she can, you should, too.
Now, get back to work, literally ( I have students to teach in about an hour and you have some task or chore at your home or job that you need to attend to), but also in the bidness of cancer advocacy. For motivation, here is a picture of our trip to DC in June when Senator John Cornyn (in the suit at the left) got on board the Conquer Childhood Cancer Act. I sure would like to add a matching one with KBH!
This is a group of Texans who lobbied with us in Washington. Erin didn't want to wear the t-shirt everyone else was wearing because she thought "an outfit would make a better impression." The young man on the far right (with the knee brace) has Ewing's sarcoma. The rest of the group were mainly parents, siblings, and friends of children who had died from cancer and a couple of doctors and nurses who work with pediatric cancer patients. This is what the t-shirts say,
I sentiment we all can agree with.
Monday, October 8, 2007
ADD ON THOUGHTS ABOUT KBH: When I have written Senator Hutchison the "canned" response I have received back indicates that she supports cancer research (but the support for legislation she lists only includes adult cancers) and that she would consider the Conquer Childhood Cancer Act if it ever comes up for a vote.
That's not good enough. Childhood cancer is not adult cancer. It has different characteristics, causes, and treatments. It needs its own funding and research. Even if everything that worked for adults also worked for children, children with cancer do not have fifteen or twenty years to wait for the promising drugs to go through three sets of adult trials, receive approval for adults, then go back into three more sets of pediatric trials, before they are finally approved for children.
Do not be put off by Senator Hutchison's nice, but ultimately hollow, words. We need a Senator willing to step up and fight for our children now.
Folks of an age will remember Schoolhouse Rock and I'm Just a Bill. (Take a trip down memory lane by clicking on this link or this one that takes you to You Tube so you can watch the original music video:)
I'm just a bill.
Yes, I'm only a bill.
And I'm sitting here on Capitol Hill.
Well, it's a long, long journey
To the capital city.
It's a long, long wait
While I'm sitting in committee,
But I know I'll be a law some day
At least I hope and pray that I will
But today I am still just a bill.
That ditty, which tells of the long, drawn out process of how a bill becomes a law attempts to capture the circuitous, sometimes torturous route, but doesn't do the process half the justice it deserves. Case in point: since the Buengers went to Washington to lobby for the Conquer Childhood Cancer Act of 2007 back in June, it looks like not much has happened. The bill is still sitting in the same committees and subcommittees where they landed in March. . .BUT. . .
A lot has happened. Since then, as a result of massive and widespread lobbying by people like you and me, 150 Representatives and 41 Senators have signed on as co-sponsors (you may notice that 41 is awfully close to the 51-person majority the bill would need to successfully pass a floor vote).
What I understand will happen next (and I strongly believe that this will happen this month), is that Senator Ted Kennedy who chairs the committee where the bill (S.911) is sitting will ask for a Mark Up. The committee will then report the bill to the floor, and when it moves up in the schedule, the full Senate will vote on it. I also believe that once the Senate takes up the bill, the House Commerce and Energy Committee (H.R. 1553) will do so as well, following a very similar process.
If you have even a passing connection to one of the Title Categories above (Texas Ex, cheerleader, Junior Leaguer, Citizen of the Lone Start State), I need your help today. My heart is breaking because the senior Senator from the state of Texas, Senator Kay Bailey Hutchison has not signed on to the bill and will not say why, nor will she make suggestions that would make the bill more palatable to her. Given her special status in those Title Categories I thought that perhaps her peers (this is you!) might make an attempt to convince her that the time has come for her to get on board! Write her. Call her. Fax her.
|Senator Kay Bailey Hutchison (R- TX)|
DC fax: 202-224-0776
Link to E-mail: http://hutchison.senate.gov/contact.html
It has been hard for childhood cancer to get the notice it deserves. Yet the years of life lost from childhood cancers are way up there, exceeded only by the two most common adult cancers.
Neuroblastoma, like many pediatric cancers, arises sporadically. It can't be predicted or prevented. As one parent summed it up: It's simply unexplainable." The cruel hand of fate regularly reaches down and taps families on the shoulder from all walks of life: It has visited the families of bankers and builders, farmers and financial traders, doctors and deliverymen, teachers and lawyers, and so many others. There is so much left to learn and so many lives to save. Unfortunately, pharmaceutical companies don't see much chance for profit with children, and most private fund raising for cancer (think American Cancer Society, Lance Armstrong Foundation, or even the Susan Komen Breast Cancer Foundation) overlook children almost entirely.
If you want more fodder for a letter, you can write me and I'll tell you more, or you can check the September 10th entry below for some handy facts, or visit the CureSearch website. The important thing is DON"T WAIT. Let's give her a chance to sign up as a co-sponsor before the committee takes it up.
Besides the advocacy bit, the Buengers are taking life at their usual pace. Erin hit Bryan High Homecoming on Friday night with "the other" Aaron, and apparently had a blast staying up past her parent's bedtime.
Saturday brought another tight loss (1-0) on the pitch, but we are all confident that if we continue to do things right, the victories will start adding up. Saturday night the soccer team descended upon the innocent home of one of her teammates (Sydney Jeter) for a slumberless birthday party. Erin was groggy and complaining when I picked her up early for Sunday school, but we had to get their since the children's choir was singing the anthem for World Communion Sunday. Tomorrow is the fifth grade classes' all day field trip to Camp Allen (I have gotten sucked into serving as a half-day chaperone. . .I'll tell you about the mosquitofest later).
In between these activities, Erin has busily created a large pile of campaign posters and paraphernalia for her big run for Student Council. Since almost everyone in her class is running (each class selects one representative), she figures if she can get three or four votes she'll have a plurality. She has also been working on castle building!
Wednesday, October 3, 2007
If the Olympic Committee offered an event that required stamina and endurance, patience, cheerfulness, scrupulous attention to detail, and the ability to walk miles carrying bags laden with puzzles, stuffed animals, homework packets, medical records, gatorade bottles, and general detritus, I would have medaled yesterday. And Olympic bling hanging around my neck wouldn't have felt better than the phone call from Erin's doctor (as I sat, unmoving, in the HOV lane on the way out of town), telling me that Erin was still stable (clear bone scan, stable CT scan) and that we could continue with the low-dose treatment plan that has given Erin such great quality of life.
For those of you who want the medical details:
Erin's blood numbers
PLT 277,000, all normal.
Chemistries (including BUN and creatinine) all normal.
Liver panel all normal, save the AST, which was 2 points higher than normal, but which has been about double normal but trending downward for the past several draws. This means that cyclophosphamide isn't irritating her system and causing as much inflammation as etoposide did.
For those of you who want the play-by-play:
What Else Went Well:
- I had cunningly called last Friday and put my insurance co-pay and deductible on my credit card, so I wouldn't have delays checking in.
- Erin sucked her oral contrast down for her CT scan quickly and efficiently. We made up time and the CT scan happened as scheduled.
- Dr. Heidi Russell worked us in between our bone scan prep and our bone scan (about three hours earlier than our scheduled appointment) and already had the official CT report showing stable results.
- Sam and Erin entertained each other all day, churning between television, cards, computers, books, hand-held games, and chit chat.
- The gift shop, once again, proved well-stocked. I am waiting for the day that Erin goes in and can't find a single thing that she doesn't already have.
- Even though I had cunningly called ahead of time twice so that we could make the tight schedule between IV placement and CT prep, the IV placer was late, putting us half an hour behind schedule from the get go.
- The CT techs can't figure out why the IV contrast burns Erin so badly that she cries every time it is injected. It's so hard to ask her to lie still on the table, when she and I both know that she's about to be tortured.
- A new (and vigilant) nuclear medicine tech (and presumably a new radiologist) insisted on taking several extra series of bone scan shots of Erin's shins, knees, hands, forearms, and elbows, asking me things like "Has Erin ever broken bones?" (no), "Does she have scoliosis?" (no), "Has Erin sustained a trauma or blow lately?" (no). Erin has never had bone disease, so I never really worry about the bone scan. When he re-did her legs, I thought, "Oh, that's just some deep bruise from soccer." When he re-did her hands (twice), I thought, "Can't he see that she has an IV stuck in the back of her hand that would show the tracer brightly?" When he asked me about her back, I told him about her divot left over from surgery three years ago. I believed everything I said, but I thought having anomalies in the scans show up in all those places at once seemed unlikely. This caused me to obsess about potentially bad results for the next three hours.
- The endocrinologist couldn't tell us anything we didn't already know. She ordered more labs which I had anticipated. I had cunningly called ahead to ask about that possibility and had kept Erin's IV in place all day so that she wouldn't have to face another needle poke. Unfortunately, the lab refused to use the IV, scuttling my plan, and making Erin extremely angry.
- The extra labs, the extra flu shot opportunity, and the extra bone scans shots put us behind schedule getting out of town, but Erin and Sam still thought we could make it for most of soccer practice if I drove efficiently. Unfortunately, something stalled traffic on the 290 HOV lane leaving town, and it took 42 minutes to travel about four miles. After that, traffic eased, and we floated on down the highway--ultimately too late for soccer, but just in time for dinner and a beer night cap (for me, not Erin).