Friday, February 29, 2008

Erin's Letter

February 29, 2008--Second Post Today

I don't know if it's the unusual date (Leap Day) or the spectacular number of visitors to the site today (WELCOME SARAH SMITH FANS AND THANK YOU FOR STOPPING BY OUR CORNER OF THE INTERNET), but I was moved to post again. This time with the letter Erin has been working on for her senator:

Dear Senator Hutchinson,

My name is Erin Buenger. I am 10 years old and live in Bryan,
Texas. I am a happy and energetic girl. I play soccer and piano and
sing in the choir. I am on the Student Council at my school, and I
recently set the school endurance record for jumping rope. I
have met former President George Bush and Barbara Bush, Senator John
Cornyn, and my Representative Chet Edwards. My dream when I grow up
is work for the government as a Congresswoman, as President or maybe
both. Also one more fact about me is that I have cancer.

You may not know much about cancer in kids like me. Cancer kills
more kids than any thing else. It kills more kids in the US than
cystic fibrosis, muscular dystrophy, asthma, and AIDS combined. In
fact every sixteen hours a child with my kind of cancer,
neuroblastoma, dies. Think about how many kids that is! I do not
know the exact number, but it is a lot.

When I was first diagnosed with neuroblastoma, I was five years
old. I was in the hospital for 75 of the first 150 days I was in
treatment. That sounds like a lot, but compared to other kids with
neuroblastoma, I was pretty lucky. By the time first grade rolled
around, I was as good as new and growing hair. I'd like to tell you
that everything turned out great, but it didn't. I relapsed when I
was in the second grade. Talk about a bad way to spend spring
break. Finding out you have cancer again is pretty bad. (My parents
didn't tell me at the time, but now I know that relapsed
neuroblastoma has no known cure. I'm hoping that doctors and
scientists can discover something to change that.).

I am writing to you so that you will know first hand about a kid
with cancer. Since you are my Senator, I figured you would want to
know, so that you could vote for the Conquer Childhood Cancer Act (S.
911). Before you can vote for it, it has to get to the Senate floor,
which means it has to have 60 co-sponsors. It has 53 today, and I
wish that you were one of them.

Your Friend,

Erin Buenger

Don't look for any more posts until at least Monday. At 6:00 this evening I start an eighteen-hour training course to get my "E" License to coach soccer (three hours tonight, nine tomorrow and six on Sunday). I'm pretty good at book learning, but thirteen of the hours are out on the field and involve the students (like me) pretending like they can actually play soccer. I can already tell I'm out of shape just thinking about it. Did I mention I was old, too?

Advocacy Update: Calling All Erin Fans

February 29, 2008

Some of you may wonder why the Senate has not yet voted on the Conquer Childhood Cancer Act (S.911). Here is my, probably flawed, understanding:

Historically, any Senator has the right to filibuster any bill. This means they can take the floor and speak continuously without yielding, thus "talking the bill to death." A vote for cloture breaks a filibuster. That means that if three-fifths of the Senators want the bill to be considered, they can break the filibuster. It also means that 41 Senators can keep a bill from consideration because they can threaten to vote against cloture.

Right now, 53 Senators have signed on as co-sponsors to the Conquer Childhood Cancer Act, S. 911, and 47 have not. So, even though a majority of Senators obviously support the bill (as evidenced by their willingness to publicly co-sponsor) and even though it only takes a majority to pass the bill, it will not get to the floor for a vote until it can demonstrate enough support (60 co-sponsors) to pass cloture without ever actually having to filibuster (can you imagine someone standing up and filibustering against the CCCA? I can't, but unless the members in favor can get 60 publicly on their side, those against the bill don't have to reveal themselves).

What does this mean? It means bad news for all of you who got very friendly letters from your Senators who have not yet signed on, saying something like
"should S. 911 come for consideration before the full Senate, you may be certain that I will keep your views in mind." They make it look like they will weigh your views, but they may not intend for the bill to ever reach the full Senate.

Earlier this week (Monday night), a couple of the bill's co-sponsors (Senator Jack Reed of Rhode Island and Senator Ron Wyden of Oregon) used floor time to plea their case to their colleagues blocking the bill. This is a link to a fifteen minute video of their speeches. Today is the day you should pick up the phone and call your non-sponsoring Senators. Ask them to sign on so that the bill can get a hearing and pass, if it is the will of a majority in the Senate.

Here is a list of all the non-sponsoring Senators, as of noon today. Texans should note that Senator Hutchinson still remains in this category. There is also a handy email link for each of these Senators. If you don't have time to phone them. Drop them one more line. Please.

Tell them Erin is going to keep jumping rope in protest until they get with the program.

Wednesday, February 27, 2008


February 27, 2008

I know we haven't made it to the official start of spring, but living in Texas allows you to cheat winter a little. Having trudged through February, spending much of the month with nagging little worries about Erin's overall health, we have now set winter aside both metaphorically and literally. Monday temperatures locally reached above 80 degrees, only to drop yesterday to the low forties and this morning to the low thirties. This afternoon, however, bloomed in the perfect way: not too hot and not too cold. . . and thankfully not too windy.

Erin had school day to match the weather. Here's the conversation I had with her teacher, when I stopped by her classroom this afternoon to ask about the days she will miss next week when we go down to Corpus Christi:

Ms. K: "Did you hear what happened to Erin at P.E. this morning?"

Mom: "No, I haven't seen her."

Ms. K: "I could barely keep from crying when it happened."

Mom (thinking, did I miss a call from the nurse?): "Is she okay?"

Ms K: "Yes. She's fine. She set a new school endurance record for jump rope. She just kept jumping and jumping. Mr. Jennings [the P.E. coach] kept saying stop Erin, stop. . . you're going to get sick. But she just kept jumping. The whole class was yelling encouragements and got into rhythm saying go Erin, go, until they all drowned out Mr. Jennings. I could barely keep from crying."

At that point Erin skipped into the classroom, fresh from her after-school hall monitor duty. I turned, expecting her to report about this great feat. She said, "Guess what, mom?" I knew, but wanted her to get to tell me, so I shrugged. She said, "I got chosen for the City Honor Choir today. We're going to sing at an A&M baseball game. It's only the best fifth and sixth grade choir students from all twenty schools. Can I do it?"

Talk about a great way to slam the door on winter and the malaise it always brings my sweet precious girl. She hates the cold. She hates the germs. She hates the early darkness everyday. Did I mention, she hates the cold? But today is spring in every sense of the word. She can jump like a tiger and sing like a bird. Her doctor had no complaints about her lackluster counts last week, and actually thought they looked nice considering she had fought off an infection and some inconvenient drug side effects. My only regret about spring's arrival, is that Erin probably won't spend as much time with the Lego Project, and her room may be destined to suffer until cold weather returns next December.

Friday, February 22, 2008

Award-Winning Studette

February 22, 2008

The blood chemistries and CBC came back this afternoon. I had hoped for better:

Hemoglobin: 11.4 (low normal)
Platelets: 206,000 (sort of low for Erin, but just fine)
White blood count: 3500 (lowish)
ANC: 2100 (low normal)

BUN: 25 (high)
Glucose: 117 (high. . .don't stop at Sonic before counts)
AST: 46 (high)
ALT: 38 (high)

everything else normal

What does this mean? I hope Erin's doctor interprets the high BUN as a result of a bad health week and a reaction to the antiobiotics, rather than weak kidneys.

As you can see, Erin looks like she has made a complete recovery. She received two awards today, one for P.E. prowess and the other for her volunteer work after school for the student council.

Thursday, February 21, 2008

Bit by Bit

February 21, 2008

What good turn did you do to make you so deserving of three posts in four days? I don't know, but I hope it was good and that someone else benefited.

Erin's body, I believe, has pumped most of the remnants of cefnidir out, and she has bounced back to something approaching normal. Her fatigue has dissipated (although that, too, has its downside since she busted her lip with an especially powerful kick while juggling her soccer ball last night). Her digestive track has returned to normal, as evidenced by the double servings of roast chicken, cole slaw, and pasta last night. For you tongue-watchers out there, the most powerful muscle in her body has resumed its usual size and acerbity. She still has a headache, common in the Brazos Valley these days, as the warm February has prompted the cedars (called junipers everywhere else in America, I think) to load their tips with yellow pollen.

Erin finished the three day topper of zithromax last night (you can imagine the bribes it cost me to get her to take even three days of a liquid medicine). We had counts done this afternoon. Since it took two sticks to get the venopuncture done, I didn't try for early returns to satisfy my base curiosity by making her do a fingerstick, too. I will have to wait until the next day like the general public.

We are getting ready for the weekend. I got a note home with Erin's report card today (lowest grade in any class this six weeks? 97), telling me I needed to report for parent duty tomorrow afternoon because Erin was receiving an award for her P.E. performance (little jock that she is). Our friends Bill and Sue, who moved to Ashville, North Carolina, have returned to town for a visit, so we will get together with them for dinner tomorrow, as well. Saturday Erin will bake for Sunday's Older Elementary Fellowship bake sale that they will hold on Sunday. Other than that, I hope we can find a little time for chores.

Tuesday, February 19, 2008

Her Tongue

February 19, 2008

My mother and I play a game called "Things that make you say hmm." (As a side note, "hmm" is said with a musing note, not with disgust or disapproval, like a harumph. It is usually a very brief exclamation intoned in the back of the throat, accompanied by lifted eyebrows and widening eyes, indicating wonderment, as to suggest, "I didn't expect that.")

Yesterday, as I waited six steps back from the customer in front of me (to ensure privacy, even though I have perfectly good hearing and eyesight, even at six paces) for Erin's new prescription, I heard a distinct clack, clack, clack, clack, clack, with an occasional click thrown in. I had chosen a point somewhere at middle distance to focus my eyes, to avoid looking like I was trying to eavesdrop on the pharmacy customer ahead of me. When I heard the noise, I looked around.

The first thing I spotted was a couple grocery shopping (my pharmacy is inside a grocery store, so this isn't remarkable or worth a "hmm." Although it almost was, because the man was carrying a pair of six month old babies, one on each hip, as he followed the woman pushing the cart through the produce section. I could think of several other, more convenient ways to shop with twins, but their choice wasn't that unique.).

I listened a bit more, and finally spotted a young girl, maybe 10 or 11, marching around the store. This sight made me say "hmm," because of the incongruity of what I spotted. She was wearing a blue, sparkly mini-dress and tap shoes (she seemed on the old side of dress up out in public) and talking loudly on a cell phone (she seemed too young to have a cell phone pressed to her ear while she roamed around the store). The combination (marching, costume, tap shoes, cell phone, too old, too young) created a "hmm" moment.

Here's another one:

Yesterday I corresponded with Erin's pediatrician about how Erin was reacting to the antibiotic she was on. I noted her fatigue, some headache, and unexplained moodiness. I concluded with "yesterday, she began noticing that her tongue 'felt wrong'."

The email program I was using underlined "her tongue" in both red and blue as if I had spelled tongue wrong and also used poor grammar. I checked the spelling, which I seemed to have gotten correct the first time, proofread the the whole message more carefully, and hit "send." Here comes the "hmm" part. The software popped up a warning box with the message that the mail I was trying to send would be offensive to most people. . . APPARENTLY BECAUSE I USED THE TWO-WORD PHRASE "HER TONGUE."

How do tongue doctors or shoe makers send e-mail if "her tongue" is offensive and blocked?

On the health front, Erin seemed less moody this morning though still more tired than usual. I have to pick her up from school in a bit, and I'm keeping my fingers crossed for a resolution of some of the side effects, including I hope, HER TONGUE. (I guess as long as I am going to be offensive to most people, I should go all the way).

Monday, February 18, 2008

A While Longer, Apparently

February 18, 2008

Last week, when I wrote "how long can it last?" I meant how long can Erin go without contracting the flu. This week, I mean how long can she go without feeling 100%, and the answer is "a while longer apparently."

When we last left our heroine, she was feeling punk and droopy, but had a diagnosis of bacterial infection and a new prescription for what I mistakenly called cefanex (actually cefdinir). I figured, let the good times roll: no flu and a quick go with a miracle drug. Erin had a four game weekend scheduled against a variety of pretty tough teams, so the quicker the recovery, the better.

Luckily for us (though not for the rest of Texas and the South) storms with heavy rains rolled through, washing out the soccer tournament and sidelining the Mystic '97. Erin probably didn't have the juice for a weekend of games. In addition to the usual handmaiden to antibiotics (stomach upset and diarrhea), cefdinir came accompanied by fatigue, headaches, and moodiness (in increasing quantities as the weekend wore on). Erin did rally to sing in church on Sunday morning, after having fallen asleep on the floor in her room waiting for breakfast. Since the sun was shining (finally) I drug her out to the Aggie Soccer Complex to watch some college games in the spring 7 v 7 tournament, and as long as she could prop herself up against me, she felt okay.

ASIDE: one cool thing happened to make the afternoon even more brilliant than the sunny skies we
sat under. The Lady Aggies came out for their 3:00 game and were doing a usual warm up: high knees in one direction, butt kicks in the other. As the whole team jogged shoulder to shoulder towards the stands, Amber Gnatzig, (who is a superstar in my opinion, and who may be even harder headed than Erin Buenger) looked up, spotted Erin sitting several rows up and called out, "look everyone, it's Erin." The whole team (even the ones that didn't know her) caught Erin's eye, waved, and called her name. It did make Erin sit taller for a while.

Today, after some e-mail exchanges, Dr. Parr and I decided to blame the antibiotic for Erin's slump. We've stopped the cefdinir and will fill in the remaining three days with zithromax. Hopefully, "a while longer" will pass quickly and I can have my Erin back fit and full of vinegar.

Wednesday, February 13, 2008

How Long Could It Last?

February 13, 2008

Often I field the question, "How is Erin doing?" Answering requires some decoding. Does the inquirer mean "How's the cancer?" or are they more interested in her day-to-day health, "Has she avoided the crud that's going around? Does she feel fit and energetic?" or are they just making conversation?

Most times I go with, "She's still stable and currently feeling quite well. Thank you for asking." This year, in particular, with various flu bugs rampant and a lot of other niggling illnesses passing from person to person, people are usually surprised by my answer. They comment how unlikely it is that she hasn't succumbed to the flu that has ripped through our area, laying low even those who took their flu shots last fall.

Yesterday, when Erin came home from school complaining of a sore throat, headache, and general droopiness, I thought the jig was up. Nico and Adam had both missed school with the flu, that according to Elaine came with sore throat, headache, body aches, and a fever. I called the pediatrician's office, who told me that the doctor had left for the day, but he could see Erin this morning at 10:00. I said okay, and crossed my fingers that we'd still be on the early side getting Tamiflu into her system to speed her recovery. I thought to myself, "Well, I knew avoiding the flu wouldn't last forever."

This morning, Erin didn't seem any better, and I was waiting for the fever to pop. I drug Erin to the doctor with a promise of no pokes for blood counts. When Dr. Parr walked into the exam room, he noted the "sitting on mom's lap" symptom, the "curled up like a ball" symptom, and the "thumb near the mouth" symptom. Three for three on the doc's quick inspection of whether a child is actually sick or not. However, after an exam, he decided that Erin's sore throat was one sided, probably indicating sinus drainage, and that she seemed more like a kid with a bacterial infection than the flu. We left with a prescription for Cefanex rather than Tamiflu, and I answered my own question of "How long can it last?". . . "a bit longer."

As long as we are on the question how long can it last, I want to mention that today is the twenty-fifth anniversary of Walter's and my first date. He made a very romantic evening of it, lo those many years ago, and stole my heart. I have always thought that celebrating Valentine's on the 13th rather than the 14th was a blessing because it allowed us to give a little jab back at the greeting card industry (independently celebrating our true love, without having to do it on the actual date they picked, but still being able to take advantage of a plentiful supply of readily available chocolate). After children, it was also a lot easier to find a baby sitter for the 13th than the 14th. Only later, when practicality almost trumped romance, did I think maybe he should have waited until the 15th, so we could get our cards and goodies at reduced-price, after-holiday sales.

Anyway, I'll tell you how long it could last. Walter and I agreed to an (implicit) sixty-four year contract when we married. We promised to stick together for the first sixty-four years before we did any renegotiations. We're not even half way yet, and although we have faced things as a couple that we never expected (think of the last five-and-a half years if I've stumped you on this one), we are more committed today than we were on our wedding day, and I am thankful every day that neither of us has to walk alone.

Friday, February 8, 2008

Heading to Georgetown

February 8, 2008

I have floated Erin's eyeballs this week. If low fluid intake had caused her uptick in BUN and creatinine last week (as I suspected), rather than her having weak or damaged kidneys cause by celebrex and cyclophosphamide (as her doctor supposed), I wanted to prove that the more virtuous would prevail. I packed Erin off to school each day with a sports bottle filled with a juice and water combo. I cooked spicy food so she would have motivation to finish her water at mealtime. Uncharacteristically, I even set a good example by downing my whole glass of water each meal. I may have even emptied a beer mug or two to show her that keeping hydrated was easy (I did not explain that beer was actually dehydrating rather than hydrating, lest I confuse her. The point was swallowing more liquids).

I got the faxed results a little while ago and the results are a bit difficult to interpret because the sample was sent to a different lab with different reference ranges. Here's how they compare:

Last week:

BUN 30 which was above the cut off for normal (>25)
Creatinine .8 which was in the normal range but significantly higher than the .5 in early January

This week:

BUN 15 which is below the cut off for normal (>18)
Creatinine .64 which is also in the normal range

I could tell I had done a good job getting liquids in her because I managed to dilute her hemoglobin from 11.8 to 10.6.

After school today we will pack up the soccer van and head to Georgetown for a weekend of kick-it-around. I like our chances in our bracket and full well expect to make it to the second day of play. I like our chances even more of Erin resuming celebrex (No, I haven't gotten a call from clinic yet giving us the green flag, but our engines are revving, and I'm sure we'll get the signal).

Monday, February 4, 2008

Just Okay

February 4, 2008

If you have to pick a time to go off of celebrex after fifteen months, it probably shouldn't be the Friday before the first soccer tournament of the season. It almost certainly shouldn't be the Friday before the first of three weekends in a row when you have soccer tournaments, where you will have three to five hour-long games each weekend.

Going off of celebrex makes most patients say "Yikes, the pain!" just because it does such a good job masking aches and pains that patients forget that they have those issues. In fact, when I googled "discontinuing celebrex" I found that the common feedback from users was just that, or as one user put it: "
Bam I am in pain, sluggish, wore down, joints hurt worse then ever, thought I had the flue bug, but figured it out." Erin did fine at the games on Saturday, as long as I kept the Tylenol/Motrin rotation coming, but Sunday, when I cut back, she remembered the second reason why she took celebrex (the first being its surprising anti-tumor effects).

The Mystic '97 had a respectable first tourney, winning one and losing two. All the games were close scorewise (0-2, 2-1, and 0-1), but we actually dominated the run of play in the first game we lost (except for two ugly goals we let in when our defense pushed up too far and went flat). It truly was one of those unlucky games (we missed both a PK and an indirect kick in the six-yard box) when we couldn't finish our chances from anywhere on the field and the other team did. We bounced back in the middle game and played quite well. It was Erin's best game of the day. She marked quite a fast and athletic forward and really didn't allow any guff. In the final game we stayed tied at zero until the last five minutes when a series of breakdowns put the other team's most skilled and speedy striker one on one with our keeper.

Had we won another game, we would have played again on Sunday, but for Erin it was probably better that she took it easy. Erin did watch the AKC championships Saturday night and fell in love with every single dog she saw. Sunday, she didn't feel like doing much: back pain, her left (non-tumor) side hurt, and she had absolutely no get up and go. She continued to unsort the Legos, processed a little email, watched the football game, and except for church and Sunday school that's about all (practically nothing for her). I sent her to school this morning with more Tylenol and a drinks bottle for hydration and got an email from the teacher a bit ago that said "So far so good."

I can't wait for the blood draw this week so we can resume the celebrex and get back to normal.

Friday, February 1, 2008

Spoke to Soon

February 1, 2008 (2nd Entry today)

I received news of Erin's blood chemistries drawn yesterday and had the disappointing news that Erin's BUN was up to 30 and that her creatinine had doubled to .8. Dr. Russell told me to take Erin off of celebrex for a week or two and see if we can get the numbers back down to where they need to be. The entire family is complicit in this situation, because rising BUN and creatinine when taking celebrex means she's inadequately hydrated. It's much harder to get her to drink enough when its cold outside, and frankly we've (I've) just been asleep at the switch.

Keep Breathing

February 1, 2008

The You Tube video on the left bar was put together by Mark Dungan of Fort Worth as part of his no-holds-barred strategy to find a cure for neuroblastoma. We care about the children in this video and wish none of them had to suffer.

Look for Erin towards the end (right before the three minute mark).