Wednesday, February 28, 2007
I couldn't believe Erin's blood count numbers yesterday.
WBC--7300 (solidly normal)
ANC--5500 (solidly normal)
Hemoglobin--10.6 (still lagging from the hard winter, but just fine)
Platelets--368,000 (solidly normal, perhaps even high normal)
These numbers have held for two weeks in a row (despite the fact that we are in the middle of week three of three in the 24th round of chemo since relapse in March of 2005). When these fantastic numbers showed up last week, I discounted them because I thought the infection she had and the Z-Pack she was on probably puffed them up a bit. BUT I have to tell you I was thrilled to see them again this week. It speaks to her overall health and reinforces the notion that she has put the winter behind her, much as Richard III did: "Now is the winter of our discontent Made glorious summer by this sun of York."
So happy am I about Erin's current health that I'm not even complaining about how the pace has picked up around the joint. Somehow two soccer practices plus a game each week morphed into two soccer practices, a game, and two scrimmages this week (this does not include my game and practice). Add this to the already scheduled horseback riding and the newly inaugurated piano lessons, and you get quite a marathon. Erin also took special care on a school project about Patricia Roberts Harris this week. I didn't know much about Secretary Harris, but I think Erin captured her essence in this short assignment. Here is what she wrote (I have left it in the exact form that Erin turned it in, punctuation errors and all. I think it is hilarious that her research turned up a reference to the incident with Bill Proxmire, but no description of it, so she just stuck it in because it sounded interesting and daring.):
The person I am writing about is Patricia Roberts Harris, an African American born on May 31, 1924 in Mattoun, Illinois. She lived in many interesting places including Chicago, Washington D.C., and Luxembourg. She dies on March 23, 1985 in Washington D.C. at the age of 60.
Harris had a lot of first for African American women including being the first African American woman in the cabinet (she was a Democrat!), the first lady African American chosen dean of a law school, and the first African American ambassador. In 1946 she was a program director for the Young Women Christian Association. She served as the United States secretary of health and services under president Jimmy Carter, and in that position had a very famous exchange with Senator William Proxmire. She also earned a partnership in a very large law firm.
I wish I could have met Patricia Roberts Harris because she was such a accomplished and good woman. Also, if I had met her I would have asked her what it felt like to be the first at something. What would you have asked?
As long as we are on Froth and Light, I'll show you one of the masterpieces Erin produced this week. I don't know about other children, but both of mine need downtime as much as they need activity in their lives. For Davis and Erin, downtime means holing up in their rooms and listening to audio books, while working on arts and crafts. I know, this doesn't sound relaxing to everybody, but it is to them. It also explains why I have a large investment in craft sticks, why empty paper towel tubes rain down on my head whenever I open the cabinet above the stove, and why pipe cleaners and glitter glue are permanent items on my shopping list. Besides this beautiful two-dimensional expression, Erin has also been building a castle. It has a long way to go, but she's not worried, there are a lot of audio books in the world. She told me I could take a picture and post it when she was done.
I didn't get this posted on Thursday (like many of you were hoping), so here is an add on. Erin and her soccer playing buddies played in and won a scrimmage against an older team last night, 3-1. We then loaded a couple of then into the van and headed over to the Aggie Soccer Complex, where the Houston Dynamos were playing against Puntarenas F.C. of Costa Rico. This was the second of a two game series for advancement to the semifinals of the CONCACAF Championship tournament. Since Houston lost the first game 1-0, they had to win last night by two or more to advance. We had great seats (five rows from the field, right near the midfield line) and could see everything: players heads cracking together when they went up to head the ball, sweat flying, and jersey grabbing. The girls also got an eyeful and an earful from the passionate fans that paraded around, beating drums and sounding horns. The picture at the left are the tamer ones. The rest looked like they had hitchhiked over from Mardi Gras in a tank truck hauling orange paint. Their language was as colorful as their outerwear, and I was momentarily grateful I had not yet started on Erin's bilingual education. The game also provide Erin an opportunity to work on pumping her weight back up to pre-Thanksgiving levels. What did you have for dinner last night? Erin had a hot dog, a huge tub of popcorn, a bag of skittles, cotton candy, and whatever Sam and Cat shared with her from their stash. I think she covered all of the main food groups, except chocolate. Junk food, just one more dimension of the cultural experience offered by el juego bonita.
What's up next for the intrepid Buenger clan? I'll leave in a couple of hours to fetch Davis home for his spring break (and to gather new bits for the DavRep). Uma, "the Martel of Dogs," is road tripping with me at Davis's request. I think he wants to prove to his buddies that such an obviously cat-like dog actually exists. Erin is walking home from school with Nico and company for a rousing Monopoly tournament this afternoon. Tomorrow, the Red Hot Chili Peppers face off against one of their big rivals. Erin has arranged for a little outdoor tromping around time tomorrow afternoon if the weather holds. Because she doesn't have to go to clinic in Houston this month, we decided to ditch school anyway and head to San Antonio at the end of next week. This gives Davis a little Spring Break vacation, and let's travel us a family to the Texas State Historical Association meeting with Walter.
I told you this was going to be froth and light. Not a serious thought has entered my mind in the writing of this entry. I had considered an entry organized around the theme, "Can Dogs Go to Hell?" in the aftermath of finding that Willie had eaten my Bible last week, but decided that weighty theological questions were out of place in an entry meant as dessert.
Tuesday, February 27, 2007
I read the following parable on Ryan Malarkey's website and felt it spoke directly to the conversation I started with you last week. I will leave this up for today, then update you about Erin tomorrow (I promise).
A mouse looked through the crack in the wall to see the farmer and his wife open a package.
"What food might this contain?" The mouse wondered - he was devastated to discover it was a mousetrap.
Retreating to the farmyard, the mouse proclaimed the warning, "There is a mousetrap in the house! There is a mousetrap in the house!"
The chicken clucked and scratched, raised her head and said, "Mr.Mouse, I can tell this is a grave concern to you, but it is of no consequence to me. I cannot be bothered by it."
The mouse turned to the pig and told him, "There is a mousetrap in the house! There is a mousetrap in the house!"
The pig sympathized, but said, I am so very sorry, Mr.Mouse, but there is nothing I can do about it but pray. Be assured you are in my prayers."
The mouse turned to the cow and said, "There is a mousetrap in the house! There is a mousetrap in the house!"
The cow said, "Wow, Mr. Mouse. I'm sorry for you, but it's no skin off my nose."
So, the mouse returned to the house, head down and dejected, to face the farmer's mousetrap alone.
That very night a sound was heard throughout the house -- like the sound of a mousetrap catching its prey.
The farmer's wife rushed to see what was caught. In the darkness, she did not see it was a venomous snake whose tail the trap had caught.
The snake bit the farmer's wife. The farmer rushed her to the hospital, and she returned home with a fever.
Everyone knows you treat a fever with fresh chicken soup, so the farmer took his hatchet to the farmyard for the soup's main ingredient.
But his wife's sickness continued, so friends and neighbors came to sit with her around the clock.
To feed them, the farmer butchered the pig.
The farmer's wife did not get well; she died.
So many people came for her funeral, the farmer had the cow slaughtered to provide enough meat for all of them.
The mouse looked upon it all from his crack in the wall with great sadness.
So, the next time you hear someone is facing a problem and think it doesn't concern you, remember-- when one of us is threatened, we are all at risk.
We are all involved in this journey called life. We must keep an eye out for one another and make an extra effort to encourage one another.
CANCER IS EVERYONE"S PROBLEM! So, if you haven't sent your letters to your congressmen to stop the cuts in Cancer Research you can do so now. Go to the Curesearch site and pass the link on to friends as well! Thanks.
Tuesday, February 20, 2007
(I added the Senators from the Senate Appropriations Health Subcommittee to the list of key Representatives to target, if you are checking back)
Looking for something frothy and light from this entry? Check again next week. What you are about to read is deadly serious.
I don't know if you saw the video clip that aired last week on the ABC News about the President's budget request as it affects funding for clinical trials for cancer. There are (at least) two points to think about when viewing the clip:
1. The heads of the Children's Oncology Group will have to decide which clinical trials get funded and which don't, which means deciding which children get treated with the latest available options and which don't. At the proposed funding level 20 of the 90 scheduled trials will be canceled (22%).
2. Children like Erin with rarer childhood cancers will be one of the groups most affected by these cuts.
This stuff makes me mad.
Fifty years ago only one or two out of every ten children diagnosed with childhood cancer survived. Some very hard-working and compassionate doctors pulled together to build cooperation and trust in the clinical trial system. Today about three-quarters of all children with cancer are treated under clinical trials (this compares to about 2 percent--not a typo--two percent of adults that take advantage of trials). Because of the rapid expansion of knowledge about treatment afforded by the use of clinical trials, the survival rate across the board for pediatric cancers has risen to 78%. This is good news and good science.
It is also necessary. Pharmaceutical companies are not that interested in developing new drugs to treat pediatric cancers because the market is too small (12,500 new diagnoses each year). Without the motive for high profits, there is market failure. When markets fail, governments have the obligation to step in and provide incentives. That's why it makes no sense to me to cut funding for trials. AND I'm not talking about billions of dollars. I'm not even talking about hundreds of millions of dollars.
Taking $9 million dollars from the budget for pediatric clinical trials is not trimming "waste, fraud, and abuse," it is taking 400 children further from their dream of surviving the nightmare of having cancer.
Don't get me wrong. I'm glad we have the drug that Erin has taken for the past fifteen months that has kept her stable. That drug was developed (for adults) in the early 1970s and has been cleared for use by the FDA for over thirty years. What I'd really like is progress in clinical trials of some of the agents that are not cytotoxic (poisons). As it is, each month that goes by, Walter and I have to weigh the positives of Erin's current situation with the real possibility that taking even low-doses of cytotoxins for an extended period will result in secondary cancers and other health issues. Progress can not happen fast enough for children like Erin. That is why it breaks my heart when clinical trials are delayed or canceled.
On the advice of our Congressman, Chet Edwards, who has been one of Erin's staunchest friends, we are looking for people around the country to help get the message out. Writing your Senators and Representatives is good, BUT IT WOULD BE EVEN BETTER if you lived in one of the districts we are targeting. These districts are represented by individuals on the Appropriations Subcommittee that decides funding for the National Cancer Institute. Check out the list below and see if you live in one of these districts or if you know someone who does (I have listed the biggest cities I could think of in each district, so if you are geographically challenged you might can still figure it out).
If you feel moved by what I have written Click Here. This will take you to a place that has the email address of every member of Congress, by zip code. You can do this RIGHT NOW.
Wisconsin-7th (Wausau and Ashland look like the biggest cities)
New York-25th (Syracuse)
New York-18th (New Rochelle, White Plains, and Yonkers)
Connecticut-3rd (New Haven, Middletown, and Naugatuck)
Illinois-2nd (Chicago Heights, Park Forest, and Calumet City)
Rhode Island-1st (Providence, Bristol, and Newport)
California-34th (Los Angeles County, I'm not sure how much of LA,
looks like east and south east)
California-9th (Berkley and Oakland)
New Mexico-3rd (Santa Fe, Gallup, and Clovis)
California-15th (Santa Clara)
Minnesota-4th (St. Paul)
Ohio-17th (Youngstown and Kent)
Ohio-16th (Canton and Medina)
Pennsylvania-5th (State College and Lewiston)
Florida-15th (Kissimmee and Vero Beach)
Idaho-2nd (east part of Boise, Twin Falls, and Idaho Falls)
Montana-1st (whole state)
The following Senators serve on the Senate Appropriations Health subcommittee:
Tom Harkin (Chairman) (IA)
Daniel Inouye (HI)
Herb Kohl (WI)
Patty Murray (WA)
Mary Landrieu (LA)
Richard Durbin (IL)
Jack Reed (RI)
Frank Lautenberg (NJ)
Arlen Specter (PA)
Thad Cochran (MS)
Judd Gregg (NH)
Larry Craig (ID)
Kay Bailey-Hutchison (TX)
Ted Stevens (AK)
Richard Shelby (AL)
Note: KBH has not signed on to the Conquer Childhood Cancer Act yet,
and needs to hear from all us Texans.
If you don't know what to write, you can go to CureSearch.org for more details. I also found this article by Liddy Shriver to be useful if you want even more statistical ammo.
Okay. So I can't resist a little froth and light. Yesterday was PPR Day! Erin and her buddies pulled on their PPR shirts and hit the wilderness behind the dam. I understand there was a problem again with the rule following in the Houston Affiliated Group of the PPR. More punishments were meted out.
Wednesday, February 14, 2007
No, that's not my favorite radio station. That was Erin's temperature when I took it Monday evening. It really surprised me. I had noticed that she had the sniffles. I had noticed that her cough had flared up again, just a few days after finishing a round antibiotics for lung gunk. I had even noticed that her ears weren't quite right. She said they felt like she had cups over them (I thought she was just ignoring me when I asked her to pick up her dirty clothes). BUT, she had not revealed illness to me over the course of her rather active day. On invitation from her kindergarten teacher, Leslie Borski, she spent the morning at her old school as a helper. She loved assisting various five year olds make melted crayon hearts and valentine people. She also had a blast with Jackson on Monday afternoon building Legos and playing SimCity. But what can I say, I got back from walking Willie and Uma around the lake about 6:00, and I could tell she was warm. Did I say warm? I mean blazing!
This discovery bought her a forced holiday from school, although after a dose of Tylenol Monday evening, her temp stayed normal. Walter set his schedule aside and stayed home with her on Tuesday so I could get my classes taught (the ability to work from home on the newly acquired computer with super-fast modem did a lot to ameliorate the decision). When I returned home at 2:00, Erin and I began the odyssey to discover the driver of the fever. Dr. Parr found two infected ears, but also sent us out for a chest x-ray, just to make sure. Fortunately, lung-wise, Erin was clear. She started a Z-Pack last night and felt well enough for school this morning.
Which is a good thing, since today is Valentine's Day, which for grader schoolers everywhere, means a party with high sugar content. Erin worked diligently on her valentines this year. She decided on a puzzle booklet. The cover is below. By clicking on the following options, you, too, can have the pleasure of solving the sudoku, the logic problem, the word find, the word scramble, and the word game that Erin designed.
Monday, February 12, 2007
Last Monday's clinic brought us the decent news all around. Erin's blood counts looked solid in every category, except hemoglobin. For you economists out there, hemoglobin is a "lagging" variable. It reflects the past two or three months of blood health, so Erin's hemoglobin count is still hovering a point or two below where it was before she got sick around last Thanksgiving. Given her overall improvement in health we ought to see that number climb slowly up as spring dawns. I see this surge as essential to support Erin's plans for herself, which involve soccer, softball, horse back riding, church music, and the newly inaugurated piano lessons. The other bit of clinic news was that Erin could have her next physical and full labs here in the microplex with her pediatrician, Jesse Parr. Dr. Russell gave Erin a pass since we had a complicated schedule that week with the side note that joked "Erin has been so stable. We have to keep her on the meds just so you don't forget us." I would gladly put a portrait of Heidi Russell and her whole NB team in my living room and build a little memorial around it to remember them if it would let Erin go off of meds and leave the world of neuroblastoma behind.
Davis and Brian Benjamin joined Erin and I for dinner Monday evening, and as I had hoped we had an unremarkable evening. The boys had a lot to say about "Fun Fun" math (Calculus IV) and "Imaginary" math (Complex Analysis), but the big topic of conversation was "Orgo" (Organic Chemistry). Both Brian and Davis were preparing for an 8-hour orgo day on Tuesday, with a one hour class, a four hour lab, and then in the evening, a three hour exam. On the whole, they seemed to have a pretty good attitude about it. Brian, one of the PPR day rule breakers, also seemed sanguine about taking his punishments. Davis had chosen a fellow Will Ricer, known only as Niceville, to arbitrate and pass judgment on the punishment definitions, to make sure the rule breakers received just punishment.
Erin had the delight of watching those amazing Harlem Globetrotters on Wednesday night at the invitation of her buddy Jackson. I sent her along with a $20, so she could buy souvenirs for herself and Jackson. She brought home what I used to call a whirly gig and no change. I was okay with the no change part until Thursday, when Erin's souvenir became a "willie gig," a pricey chew toy that had lost it ability to fly without frequent flier miles.
The weekend took the Buengers in four different directions. I am on a need-to-know basis about Davis and can not report his whereabouts, but I know he wasn't with me, Erin, or Walter. Walter had to attend to secret church business most of the weekend (no, he's not in a cult--just the opposite--we're Presbyterian). Erin and I had a tough call to make. We were invited to birthday parties--one in Sachse (Emma's Big Number Two!)
and one here at home (Terriana's First Annual Super Girlie-Girl Party).
I opted to let Erin stay in town to be with her friends and avoid the long car trip. Thankfully, Erin's friends treated her like a progressive dinner and just passed her along from house to house all weekend. Thank you ladies and gentlemen! Here is Erin on one of the beds she could have slept on.
Sunday, February 4, 2007
Tournament results: Erin's team 0 wins, 3 losses. The first game was the worst, a 7-0 shellacking by a Super 2 team of fifth graders who had traveled from San Antonio with every intention of winning all of their games. The second game was also a shut out, 3-0 against the other girls in the Bridge program. . .disappointing but understandable. The third game was a 0-0 until the last two minutes of play, when the local U-11 team muscled one in and brought the game to a close.
How long did Erin worry about the result?
About a minute.
Saturday, February 3, 2007
January has turned to February, and the Brazos Valley is actually having winter this year. Bob French, the local weather guru, says that we've only had five days this year with below freezing temperatures, but there have been many more that have hovered right above freezing. In general, this January has felt more like winter in Nashville--plenty of bone-chilling, dampish days in the thirties and low forties. I know, anybody from Buffalo or St. Paul reading this is chuckling about how wimpy we south central Texans are. My main concern doesn't center on my personal body temperature. I have enough extra layers of body fluff to keep pretty toasty. I'm just ready for it to warm up so that the children will all run outside and spread out, instead of hunching together around electronic devises swapping germs.
We have (have I said this before?) finally gotten a handle on Erin's childhood illnesses. The hyperactive bowels are merely active now. She has started to edge back up on weight (having lost seven pounds to illness in December and January) thanks in part to evening milk shakes and possibly that her mother now spreads peanut butter on every piece of toast and each cracker that passes her way. We also took on another round of antibiotics for the stubborn cough that refuses to retire. With just three days left of the Cefzil, Erin sounds and feels better than she has since Thanksgiving. We have clinic in Houston on Monday for a general check up and okay for the next round of chemo. I think the Dr. Russell and Shari Feinberg, NP will be exceedingly pleased with Erin's come back.
The last week has brought few surprises. Erin is testing the waters of competitive soccer. Her team is playing in the Aggieland Classic today and tomorrow, and for Walter and I the whole experience has induced flashbacks to Davis's early days with Magic soccer. As much fun as he had and as big a part of his life that soccer became, the prospects of starting over again with Erin gives me pause. I guess that happens with second children. You go into everything with much wider eyes. Of course, the second time around there is a lot less angst. I didn't stop for a moment when the coaches called a last minute practice that conflicted with Erin's already scheduled handbell and choir rehearsal. I just said sorry, we have another commitment. I knew that missing one hastily schedule practice would not hurt her soccer career in the least. For the rest of the parents who want to make sure their child has every opportunity to play, the choice seemed tougher. Maybe that wasn't the second time soccer parent perspective. Maybe that was the parent of a cancer child perspective. It becomes much harder to obsess about A team/B team, playing times, and position selection, when you're just glad your child is in the game.
Erin also got back to horse back riding this week. I understand Napoleon was quite a pill this week, which all comes when horses don't get ridden regularly. She can hardly wait to give the new horse, Jericho, a try. He is a rescued race horse (thoroughbred) and is coming along nicely.
Lest you think it's all work and no play at our house, let me report that Erin played at the park after school one day with her chums, went to Jackson's house one day and got plenty muddy, and had Noah, Aaron, and Heather over last night. I'm not sure what Erin and her friends play, but they sure do have a rip roaring time. For instance, last night when Erin and her buds came to the table for supper, each one had a small, black label (the kind that you stamp out on a sticky, plastic strip from a label gun) with random letters, stuck to a different part of their face. Erin's was on the tip of her nose. Heather had a chin sticker. Noah's was smack in the middle on his forehead, and Aaron had two, one on each cheek right under the eyes. From a distance it looked like the smudges that ball players make to block the glare. I thought about ignoring the signs, but could tell from the expectant look on everybody's faces that they were bursting to explain.
So here's what I gleaned from their explanation: They are spies. The labels are code for their jobs and special skills. Noah provides the brain power (hence he wears his on his forehead). Erin sniffs out clues. Heather is on the move (her chin moves up and down) and is a fast talker, and Aaron sees where no one else can. Hearing this, I started rapidly reviewing what the adults had been talking about before we called them for dinner (it was Friday evening cocktail hour, for heaven's sake). Had we been talking about "adult" things, secret things, things better off not shared with children. Like good spies they refused to divulge any information they picked up by spying.
Erin and her friends have also had a thorny problem to deal with. You have read in these updates that they have a club, called the PPR Club, whose primarily mission is to allow the members of the club to tromp around in the woods--making discoveries, building forts, and having various special PPR kinds of activities. The club has a hierarchy with job specialization, policies, and rules. One important rule is that club members have to celebrate PPR Day on the 19th of every month.
When Davis came home for Thanksgiving, he designed a PPR shirt for Erin (which he later silk screened for the whole club). Because the design of the shirt was so cool, his friend Matt, who was visiting for the holiday, wanted one and wanted to become an affiliated member. The interest in joining the PPR club spread when Davis and Matt went back to Rice, and some other folks from Will Rice College also became affiliated members and got t-shirts. A problem arose because last month, Brian and Matt, came to celebrate PPR Day, without their t-shirts. Quelle horreur! What should the punishment be? It was the second rules violation for Brian and the first for Matt.
To deal with this and any subsequent problems with affiliated members, they have created a list of punishments (shown below). For the first punishment, the violator can choose and perform one item from the list. The second time they must complete two items. The third time they must do three. Etc. Each time different items must be chosen. No repeats. She had originally thought that violators would need to do 19 of the 30 activities for each violation, but we talked her into softening her position.
- 19 sit ups
- 19 push ups (no girl push ups)
- 19 cart wheels
- 19 somersaults
- 19 backwards somersaults
- 19 toe touches
- 19 crunches
- 19 laps around Rice University (this is for affiliated members only)
- 19 jumping jacks
- 19 scissor steps
- 19 hand stands
- 19 donkey kicks
- 19 piggy back rides
- 19 skips
- 19 broad jumps
- 19 duck walks
- pig stools for 19 seconds
- 19 bunny hops
- 19 runs up and down the stairs
- walk 19 steps with a book on your head
- 19 calculus problems (this option is for Matt only)
- blow up 19 balloons
- 19 cherry pickers
- 19 free throws in a row (if you miss you start over)
- do 19 favors for people
- 19 runner's stretches
- make 19 different funny faces
- 19 sword fights in a row
- make 19 different funny noises