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.
Friday, February 29, 2008
Wednesday, February 27, 2008
Spring
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.
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.
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.
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).
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.
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.
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).
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.
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.
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).
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).
Thursday, January 31, 2008
Quick Counts
January 31, 2008
After sluggish counts at the beginning of the month, I am proud to report Erin's CBC registered in the normal reference range on everything when we had counts done today.
With everything nasty that's going around Erin's school and (seemingly) everywhere else she goes, I am relieved to see that she can mount a response to any infections or viruses she encounters. For you locals, Erin was the Smile of the Day in The Eagle this morning. With all the thunderstorms that passed through it was nice to have something to brighten the breakfast table.
After sluggish counts at the beginning of the month, I am proud to report Erin's CBC registered in the normal reference range on everything when we had counts done today.
WBC 4.5 K/uL
ANC 2.9
HGB 11.8 g/dL
PLT 312 K/uL
With everything nasty that's going around Erin's school and (seemingly) everywhere else she goes, I am relieved to see that she can mount a response to any infections or viruses she encounters. For you locals, Erin was the Smile of the Day in The Eagle this morning. With all the thunderstorms that passed through it was nice to have something to brighten the breakfast table.
Monday, January 28, 2008
Legos and Ice Skates
January 28, 2008
Erin, Colby, Courtney (three extremely cute kids!), and a large number of really generous folks plan to get together at the Arctic Wolf Ice Rink this evening to kick off the founding of a local chapter of Candlelighters. Candlelighters, if you don't already know, "provides hope, support, education, and advocacy to every member of any family whose child has been diagnosed with cancer."
Even though more children than you can possibly imagine are diagnosed with cancer in our area, we don't yet have the facilities to treat them in town. Most travel to Houston, Temple, Austin, or much farther for their entire treatment plan and follow-up schedule. Those of you who know us, realize how much time we have spent in Houston (or on the road getting there and getting back) over the last five and a half years. Candlelighters attempts to make that necessity more palatable through tangible support for families during and after treatment. Please read more about them at their website, http://www.brazosvalleycandlelighters.org/. The founder, Melanie Chandler, knows first hand that childhood cancer changes everything. Her daughter, Lindsey (a twelve year survivor of childhood leukemia and the inspiration for her mom's effort to start this organization here in the Brazos Valley), can't attend One Cool Event tonight. This young college student has spent the last week battling pneumonia and whooping cough. Did I say whooping cough? Yep. Her transplant treatment took away the effectiveness of her immunizations, making her susceptible for the remainder of her life to diseases that most of us think went away when our grandparents passed. Most of us live gladly with such negative long-term effects, as the price we pay for successfully eradicating cancer from our children's body. Sigh.
Anyway, Erin is one of the guests this evening, and I think in addition to the Atkinson Scion zamboni ballet, a demonstration by some of the finest young skaters in the area, and some other yet-to-be-revealed attractions, Erin is going to captain a chair ice hockey team. In the meantime, I'm trying to figure out what in my shabby, very Southern wardrobe, I can wear to a black-tie/cocktail formal gala at an ice rink (where, incidentally, I have shivered in my polar tech and stadium coat every other time I have visited). Another sigh.
Yesterday, I thought Erin might be another no-show at the event. She bounced up for breakfast after a good night sleep and promptly fell back asleep on the sofa after she finished her French toast. I tried to rally her, since the children's choir was scheduled to sing at worship, but she had a drippy nose, croaky throat, and not enough oomph to get dressed. Walter and I left her with my mom. She seemed to feel better by the time we returned, but I've learned about enforcing downtime when she gets a little under the weather. I insisted on a pajama day and quiet play. No company.
She had me pull out all twelve drawers of Legos and the box with the Lego instruction booklets. Many of you know that the only gift Davis requested for birthday, Christmas, or any special occasion for about a decade was Legos. After he put together a set, following the instruction guide, he would store the new ones with all the old ones in drawers, organized by color and function. So all the wheels and axles from all the sets went in one drawer, all the Lego people parts and accessories, in another, hinged pieces in another (you get the idea). Plain pieces (the only ones they made when I was a kid) had their own drawers, too: black, white, red, and so on for the rest of the colors.
What did Erin have in mind? She is unsorting all of Davis's sets. She pulls out a set of instructions, finds and assembles all the required pieces, and then puts the item along with the instructions in a slider bag so that pieces from one set don't have to intermingle with pieces from disparate sets. It kept her busy for hours yesterday, and if she sticks with the plan may keep her busy until she leaves for college. I finally made her slip on some shoes and take a stroll around the lake to check our blue bird nesting boxes (sadly not much blue bird action. . . yet).
Say it again, with feeling: "Vickie and Walter, you have such interesting children."
I'd like to end this entry by referring you to Alex Podeszwa's website. Alex traveled from the Dallas area to Texas Children's Hospital last year to take part in an experimental treatment, as part of an effort to scrub up his thus-far recalcitrant neuroblastoma. In addition to doing a bang up job caring for Alex, Sophie, and Charlotte, Ann and David have taken a very active advocacy role in trying to secure passage of the Conquer Childhood Cancer Act. They have recently returned from a lobbying trip to D.C. and have posted a very informative Q and A about the whole pediatric cancer funding issue. If you need fodder for your next letter (nudge, nudge, hint, hint) you should check out their link.
Erin, Colby, Courtney (three extremely cute kids!), and a large number of really generous folks plan to get together at the Arctic Wolf Ice Rink this evening to kick off the founding of a local chapter of Candlelighters. Candlelighters, if you don't already know, "provides hope, support, education, and advocacy to every member of any family whose child has been diagnosed with cancer."
Even though more children than you can possibly imagine are diagnosed with cancer in our area, we don't yet have the facilities to treat them in town. Most travel to Houston, Temple, Austin, or much farther for their entire treatment plan and follow-up schedule. Those of you who know us, realize how much time we have spent in Houston (or on the road getting there and getting back) over the last five and a half years. Candlelighters attempts to make that necessity more palatable through tangible support for families during and after treatment. Please read more about them at their website, http://www.brazosvalleycandlelighters.org/. The founder, Melanie Chandler, knows first hand that childhood cancer changes everything. Her daughter, Lindsey (a twelve year survivor of childhood leukemia and the inspiration for her mom's effort to start this organization here in the Brazos Valley), can't attend One Cool Event tonight. This young college student has spent the last week battling pneumonia and whooping cough. Did I say whooping cough? Yep. Her transplant treatment took away the effectiveness of her immunizations, making her susceptible for the remainder of her life to diseases that most of us think went away when our grandparents passed. Most of us live gladly with such negative long-term effects, as the price we pay for successfully eradicating cancer from our children's body. Sigh.
Anyway, Erin is one of the guests this evening, and I think in addition to the Atkinson Scion zamboni ballet, a demonstration by some of the finest young skaters in the area, and some other yet-to-be-revealed attractions, Erin is going to captain a chair ice hockey team. In the meantime, I'm trying to figure out what in my shabby, very Southern wardrobe, I can wear to a black-tie/cocktail formal gala at an ice rink (where, incidentally, I have shivered in my polar tech and stadium coat every other time I have visited). Another sigh.
Yesterday, I thought Erin might be another no-show at the event. She bounced up for breakfast after a good night sleep and promptly fell back asleep on the sofa after she finished her French toast. I tried to rally her, since the children's choir was scheduled to sing at worship, but she had a drippy nose, croaky throat, and not enough oomph to get dressed. Walter and I left her with my mom. She seemed to feel better by the time we returned, but I've learned about enforcing downtime when she gets a little under the weather. I insisted on a pajama day and quiet play. No company.
She had me pull out all twelve drawers of Legos and the box with the Lego instruction booklets. Many of you know that the only gift Davis requested for birthday, Christmas, or any special occasion for about a decade was Legos. After he put together a set, following the instruction guide, he would store the new ones with all the old ones in drawers, organized by color and function. So all the wheels and axles from all the sets went in one drawer, all the Lego people parts and accessories, in another, hinged pieces in another (you get the idea). Plain pieces (the only ones they made when I was a kid) had their own drawers, too: black, white, red, and so on for the rest of the colors.
What did Erin have in mind? She is unsorting all of Davis's sets. She pulls out a set of instructions, finds and assembles all the required pieces, and then puts the item along with the instructions in a slider bag so that pieces from one set don't have to intermingle with pieces from disparate sets. It kept her busy for hours yesterday, and if she sticks with the plan may keep her busy until she leaves for college. I finally made her slip on some shoes and take a stroll around the lake to check our blue bird nesting boxes (sadly not much blue bird action. . . yet).
Say it again, with feeling: "Vickie and Walter, you have such interesting children."
I'd like to end this entry by referring you to Alex Podeszwa's website. Alex traveled from the Dallas area to Texas Children's Hospital last year to take part in an experimental treatment, as part of an effort to scrub up his thus-far recalcitrant neuroblastoma. In addition to doing a bang up job caring for Alex, Sophie, and Charlotte, Ann and David have taken a very active advocacy role in trying to secure passage of the Conquer Childhood Cancer Act. They have recently returned from a lobbying trip to D.C. and have posted a very informative Q and A about the whole pediatric cancer funding issue. If you need fodder for your next letter (nudge, nudge, hint, hint) you should check out their link.
Thursday, January 24, 2008
AWOL
January 24, 2008
I didn't mean to leave you hanging last week, but for several days my unpaid job (number two assistant to Davis Buenger, college student extraordinaire) has superseded my other unpaid job of blog captain for Erin Buenger. Davis not only found himself making sit down dinner for sixteen last weekend (remember, he lives in a dorm), but he also found himself hip-deep in applications for summer research internships. I swear on a big stack of whatever you want me to swear on, that I did not fill out applications for him (I hold a grudge against helicopter parents who can't seem to cut the apron strings and let their college students fend for themselves), but there were some parts of the process he asked my advice on and some other ways I could help without violating my own code of honor. I admit, I had an ulterior motive. I really would like him to spend two months of next summer living elsewhere, having experiences he has never had.
Erin didn't seem to notice that she wasn't front and center in my daily routine. Ayesha came over from Round Rock for the long weekend. They did the usual stuff, which means I am only vaguely aware of how they spent their time. They did play makeover one afternoon, with strict instructions that they needed to wash their supermodel make up off if they left the house. They did two versions.
The very made up version:
And the very, very made up versions:
Frankly, I couldn't tell the difference.
We did have them scrub up before we went out for Walter's birthday Saturday evening.
As relaxed as the weekend was, we picked up the pace on Tuesday. Erin competed in the local piano teachers guild theory test/competition. We won't know how she did until next week, but it was a great way to kill a couple of hours on a nasty weather day. Yesterday, she helped Jackson celebrate his eleventh birthday with an after school party, followed by bells and choir practice. Tonight its back to soccer (in preparation for three tournaments over the next four weekends).
In some ways, Erin is growing so much, it's hard to keep track. At breakfast one recent morning, after discussing the causes of the War of 1812 (a topic I recalled very little about, though I did --apparently erroneously, thanks to the anonymous commenter who helped me on my history lesson. Shhh don't tell Walter, and don't remind me that I have two degrees in history--remember that it was the inspiration for the fine piece "The Overture of 1812"), she turned to Walter and said, "Now tell me dad, how come generals always get all the credit for winning a war, when really their soldiers do the fighting and it's probably their assistants that make the battle plans." To which Walter said, "I think you should ask your social studies teacher that question."
She is also working on a letter to Senator Kay Bailey Hutchinson. I asked her teacher to do this with her as a school project because I wanted it to be her words and not mine. I sent some cancer facts to the teacher along with a link to the curesearch website, so Erin could arm herself for a persuasive paper. After the first day that she worked on it, we were riding home together in the car. Erin asked me, from the back seat, "Is it true that every sixteen hours a child with neuroblastoma dies?" I told her not literally, but on average it was true, that enough children died each year from neuroblastoma that it was like one dying every sixteen hours. She was uncharacteristically quiet. I ask her if that scared her. She said "No, but it sure is hard to understand why my Senator won't sign the bill to save some of those kids' lives. Why is she so stubborn?"
I have to say it's hard for me to understand, too.
Anyway, that's it for now. I'll publish Erin's letter here when she's done. Maybe you'll take the time to write your Senator or Representative today. The Senate bill will come to a vote before too long, and its gaining momentum in the House (up to 194 co-sponsors!).
I didn't mean to leave you hanging last week, but for several days my unpaid job (number two assistant to Davis Buenger, college student extraordinaire) has superseded my other unpaid job of blog captain for Erin Buenger. Davis not only found himself making sit down dinner for sixteen last weekend (remember, he lives in a dorm), but he also found himself hip-deep in applications for summer research internships. I swear on a big stack of whatever you want me to swear on, that I did not fill out applications for him (I hold a grudge against helicopter parents who can't seem to cut the apron strings and let their college students fend for themselves), but there were some parts of the process he asked my advice on and some other ways I could help without violating my own code of honor. I admit, I had an ulterior motive. I really would like him to spend two months of next summer living elsewhere, having experiences he has never had.
Erin didn't seem to notice that she wasn't front and center in my daily routine. Ayesha came over from Round Rock for the long weekend. They did the usual stuff, which means I am only vaguely aware of how they spent their time. They did play makeover one afternoon, with strict instructions that they needed to wash their supermodel make up off if they left the house. They did two versions.
The very made up version:
And the very, very made up versions:
Frankly, I couldn't tell the difference.
We did have them scrub up before we went out for Walter's birthday Saturday evening.
As relaxed as the weekend was, we picked up the pace on Tuesday. Erin competed in the local piano teachers guild theory test/competition. We won't know how she did until next week, but it was a great way to kill a couple of hours on a nasty weather day. Yesterday, she helped Jackson celebrate his eleventh birthday with an after school party, followed by bells and choir practice. Tonight its back to soccer (in preparation for three tournaments over the next four weekends).
In some ways, Erin is growing so much, it's hard to keep track. At breakfast one recent morning, after discussing the causes of the War of 1812 (a topic I recalled very little about, though I did --apparently erroneously, thanks to the anonymous commenter who helped me on my history lesson. Shhh don't tell Walter, and don't remind me that I have two degrees in history--remember that it was the inspiration for the fine piece "The Overture of 1812"), she turned to Walter and said, "Now tell me dad, how come generals always get all the credit for winning a war, when really their soldiers do the fighting and it's probably their assistants that make the battle plans." To which Walter said, "I think you should ask your social studies teacher that question."
She is also working on a letter to Senator Kay Bailey Hutchinson. I asked her teacher to do this with her as a school project because I wanted it to be her words and not mine. I sent some cancer facts to the teacher along with a link to the curesearch website, so Erin could arm herself for a persuasive paper. After the first day that she worked on it, we were riding home together in the car. Erin asked me, from the back seat, "Is it true that every sixteen hours a child with neuroblastoma dies?" I told her not literally, but on average it was true, that enough children died each year from neuroblastoma that it was like one dying every sixteen hours. She was uncharacteristically quiet. I ask her if that scared her. She said "No, but it sure is hard to understand why my Senator won't sign the bill to save some of those kids' lives. Why is she so stubborn?"
I have to say it's hard for me to understand, too.
Anyway, that's it for now. I'll publish Erin's letter here when she's done. Maybe you'll take the time to write your Senator or Representative today. The Senate bill will come to a vote before too long, and its gaining momentum in the House (up to 194 co-sponsors!).
Thursday, January 17, 2008
Three Bits of Good News
January 17, 2008
First bit: I feel well enough to post. I didn't mention last Sunday, but Walter spent last week battling a flu/upper respiratory jobber that kept him from feeling his best for the good part of a week. He graciously shared. So, I have mostly stayed home with my junky cough and my less-than-energetic, feverish body this week, making an art of elbow bumping so that I could keep my germy hands to myself. If feeling better weren't enough, I am pleased to announce that Erin has lived at Germ Central for ten days and has not yet succumbed like the older and weaker spirited adults she lives with. Can you say IVIG?
Second bit: Yesterday, out of the blue, Erin received a gift card in the mail to Toys R Us. We need to thank you. Accompanying the card was the explanation that in 2007 you had hung 575 ornaments on Erin's Giving Tree at Lunch for Life, which earned her the special treat of a sponsored trip to the toy store. All of that donated money goes to neuroblastoma research, and it was a privilege to present her with that card (although for the life of me I can't imagine a single thing available at Toys R Us that we do not already own and have in our own home. Erin assures me she can find something.). For any of you keeping track, Lunch for Life raised over a quarter of a million dollars for neuroblastoma research this year by asking people to give up their lunches.
Third bit: State team leaders from CureSearch just returned from a trip to Washington D.C. to push some more on the Conquer Childhood Cancer Act. In two days worth of visits they convinced nine more Representatives to sign on as co-sponsors of the bills, bringing the total to 185 (remember we would need 218 for a positive vote). This is by far the closest we have ever come to the bill even getting out of committee. Hopefully, when Congress re-convenes this bill will pop up on the agenda.
First bit: I feel well enough to post. I didn't mention last Sunday, but Walter spent last week battling a flu/upper respiratory jobber that kept him from feeling his best for the good part of a week. He graciously shared. So, I have mostly stayed home with my junky cough and my less-than-energetic, feverish body this week, making an art of elbow bumping so that I could keep my germy hands to myself. If feeling better weren't enough, I am pleased to announce that Erin has lived at Germ Central for ten days and has not yet succumbed like the older and weaker spirited adults she lives with. Can you say IVIG?
Second bit: Yesterday, out of the blue, Erin received a gift card in the mail to Toys R Us. We need to thank you. Accompanying the card was the explanation that in 2007 you had hung 575 ornaments on Erin's Giving Tree at Lunch for Life, which earned her the special treat of a sponsored trip to the toy store. All of that donated money goes to neuroblastoma research, and it was a privilege to present her with that card (although for the life of me I can't imagine a single thing available at Toys R Us that we do not already own and have in our own home. Erin assures me she can find something.). For any of you keeping track, Lunch for Life raised over a quarter of a million dollars for neuroblastoma research this year by asking people to give up their lunches.
Third bit: State team leaders from CureSearch just returned from a trip to Washington D.C. to push some more on the Conquer Childhood Cancer Act. In two days worth of visits they convinced nine more Representatives to sign on as co-sponsors of the bills, bringing the total to 185 (remember we would need 218 for a positive vote). This is by far the closest we have ever come to the bill even getting out of committee. Hopefully, when Congress re-convenes this bill will pop up on the agenda.
Sunday, January 13, 2008
Snap, Crackle, Pop
January 13, 2008
I have something today that very few Americans have. I'm actually willing to make a small wager that none of our "regulars" have what I have: a sparkling clean floor under both my range and my refrigerator, accompanied by pristine walls surrounding them. I have not just moved into a new house.
Yesterday, as we took a leisurely start to the day, pre-heating the oven for sticky buns, sipping coffee, and thumbing through the paper, we heard a snap, some crackling, and a pop. I was not serving Rice Crispies.
The heating element in our range had broken (after years of use), causing a smallish fire as the electricity arced across the break trying to complete the circuit. I've seen this happen before, so I didn't panic. Unfortunately, the range of my experience didn't guide me in what happened next. Apparently, the arcing got so hot that the element didn't immediately burn itself out. Instead, if you imagine an incense stick (only 1000 times brighter and about 3/8 of an inch thick. Actually, I think you'd have a more accurate image if you pictured someone welding), the fire followed the path of the element along the bottom of my oven. I turned the oven off. It didn't waver. Walter and I considered what would happen if it made it all the way around to where the element entered the oven: would it just fizzle out or would there be some grander (and less palatable) end. Walter grabbed the box of baking soda (which I handily keep right by the stove), and dumped the contents on the fire. It burned as bright, if slightly more colorfully. I grabbed the fire extinguisher and quickly scanned the label to learn if fire extinguishers worked on electrical fire. Luckily, it had pictorial directions, showing an electrical outlet with tongues of flame and the word OK next to it. I pulled the pin and pumped the contents into the oven. The fire didn't falter. Walter grabbed the fire extinguisher and gave it a more manly quantity. No effect. We closed the oven door again and wondered what would happen next.
For the record, despite all of our grace under pressure, we did not think to un-plug the range or run outside and flip the breaker off.
We waited as the nova-like end of the element ate its own body up. Then, it made another tiny snap, crackle, or pop and snuffed itself out.
Have you ever used a fire extinguisher? They have a variety of contents: the main one ours had was monoammonium phosphate. That's an ingredient in a lot of fertilizers. It's not particularly toxic, but you neither want to eat nor breathe in a lot of it. You really don't want it lying in piles around your kitchen, with a noticeable dusting on your forks and spoons, cookware, and coffee pot. Had the fire extinguisher actually contributed to saving our lives, our kitchen, our range. . .Had the cloud of yellowish haze done anything at all. Perhaps then, we wouldn't have felt so burdened by the massive clean up job facing us as the inside of the oven darkened to its usual cave-like appearance.
Nevertheless, nine hours later, every bit of the yellow dust that clung to the floor and the walls, the inside and outside of the range, nearby cabinets, drawers and all their contents, was gone. All day, I felt like the children in The Cat in the Hat, who tried to get the last of the pink stuff out of the house before mother returned, only to find more of it at each turn. Without the aid of little cat Vroom, we finally ran the dish washer one last time, took the mess of rags and towels to the washer, and left for dinner out.
I have to say, that I try very hard to look at the bright side, and most times its easy. So give me a chance to brag on my clean kitchen. It's small solace, given the myriad of other ways I had considered spending my rare, free Saturday.
Also, Ellen, forgive me for making you all hang fire waiting for the photos from The Trip. With A&M starting classes tomorrow, I had put off updating about Erin's grand time until I had my courses sorted out and set up. Yesterday was going to be the big day. Ooops.
You may remember that Erin had a New Years getaway to Fort Worth on the 2nd through the 5th. I didn't get too many details, because apparently the Benson's hit the road running much like the Buengers do, and don't slow down for much. I think they fit in basketball, swimming, pizza, skating, fairy play, and a museum trip, not necessarily in that order. Here are Erin and Clayton Sue. Their expression says it all. . .something like "will work for fun!"
You non-Texans may not understand what I'm about the explain. In fact, it took Erin twice (or maybe thrice) to splain it to me. One day they went to the Natural Science Cowgirl Museum. Doesn't that just scream Fort Worth? I think the Fort Worth Museum of Science and History is temporarily housing the Cowgirl Museum while it's under construction, but I can't think of a better combo to share digs if you want to encourage young women to think outside the box. Here they are (dare I say this, given the disaster at Buengerville yesterday) building a circuit.
At least Erin understands some of the benefits of actually completing the circuit:
It wasn't all brain food for these girls:
I have something today that very few Americans have. I'm actually willing to make a small wager that none of our "regulars" have what I have: a sparkling clean floor under both my range and my refrigerator, accompanied by pristine walls surrounding them. I have not just moved into a new house.
Yesterday, as we took a leisurely start to the day, pre-heating the oven for sticky buns, sipping coffee, and thumbing through the paper, we heard a snap, some crackling, and a pop. I was not serving Rice Crispies.
The heating element in our range had broken (after years of use), causing a smallish fire as the electricity arced across the break trying to complete the circuit. I've seen this happen before, so I didn't panic. Unfortunately, the range of my experience didn't guide me in what happened next. Apparently, the arcing got so hot that the element didn't immediately burn itself out. Instead, if you imagine an incense stick (only 1000 times brighter and about 3/8 of an inch thick. Actually, I think you'd have a more accurate image if you pictured someone welding), the fire followed the path of the element along the bottom of my oven. I turned the oven off. It didn't waver. Walter and I considered what would happen if it made it all the way around to where the element entered the oven: would it just fizzle out or would there be some grander (and less palatable) end. Walter grabbed the box of baking soda (which I handily keep right by the stove), and dumped the contents on the fire. It burned as bright, if slightly more colorfully. I grabbed the fire extinguisher and quickly scanned the label to learn if fire extinguishers worked on electrical fire. Luckily, it had pictorial directions, showing an electrical outlet with tongues of flame and the word OK next to it. I pulled the pin and pumped the contents into the oven. The fire didn't falter. Walter grabbed the fire extinguisher and gave it a more manly quantity. No effect. We closed the oven door again and wondered what would happen next.
For the record, despite all of our grace under pressure, we did not think to un-plug the range or run outside and flip the breaker off.
We waited as the nova-like end of the element ate its own body up. Then, it made another tiny snap, crackle, or pop and snuffed itself out.
Have you ever used a fire extinguisher? They have a variety of contents: the main one ours had was monoammonium phosphate. That's an ingredient in a lot of fertilizers. It's not particularly toxic, but you neither want to eat nor breathe in a lot of it. You really don't want it lying in piles around your kitchen, with a noticeable dusting on your forks and spoons, cookware, and coffee pot. Had the fire extinguisher actually contributed to saving our lives, our kitchen, our range. . .Had the cloud of yellowish haze done anything at all. Perhaps then, we wouldn't have felt so burdened by the massive clean up job facing us as the inside of the oven darkened to its usual cave-like appearance.
Nevertheless, nine hours later, every bit of the yellow dust that clung to the floor and the walls, the inside and outside of the range, nearby cabinets, drawers and all their contents, was gone. All day, I felt like the children in The Cat in the Hat, who tried to get the last of the pink stuff out of the house before mother returned, only to find more of it at each turn. Without the aid of little cat Vroom, we finally ran the dish washer one last time, took the mess of rags and towels to the washer, and left for dinner out.
I have to say, that I try very hard to look at the bright side, and most times its easy. So give me a chance to brag on my clean kitchen. It's small solace, given the myriad of other ways I had considered spending my rare, free Saturday.
Also, Ellen, forgive me for making you all hang fire waiting for the photos from The Trip. With A&M starting classes tomorrow, I had put off updating about Erin's grand time until I had my courses sorted out and set up. Yesterday was going to be the big day. Ooops.
You may remember that Erin had a New Years getaway to Fort Worth on the 2nd through the 5th. I didn't get too many details, because apparently the Benson's hit the road running much like the Buengers do, and don't slow down for much. I think they fit in basketball, swimming, pizza, skating, fairy play, and a museum trip, not necessarily in that order. Here are Erin and Clayton Sue. Their expression says it all. . .something like "will work for fun!"
You non-Texans may not understand what I'm about the explain. In fact, it took Erin twice (or maybe thrice) to splain it to me. One day they went to the Natural Science Cowgirl Museum. Doesn't that just scream Fort Worth? I think the Fort Worth Museum of Science and History is temporarily housing the Cowgirl Museum while it's under construction, but I can't think of a better combo to share digs if you want to encourage young women to think outside the box. Here they are (dare I say this, given the disaster at Buengerville yesterday) building a circuit.
At least Erin understands some of the benefits of actually completing the circuit:
It wasn't all brain food for these girls:
Thursday, January 10, 2008
A Few
January 10, 2008
My grandmother used to tell this joke:
A farmer asked his mule if he wanted some oats. The mule said a feeeeeew. Not funny at all, unless you're eight, and it's your grandmother, and she draws out the "few" to make it sound like a mule passing gas.
[Aside, for context: my grandmother on my mother's side was a character, long on flair, an able weaver of tales. She like to "keep the conversational ball rolling," which translated nicely means she could converse ably with a post. This being the South, you would recognize her by other women you may know from books, movies, or television: Aurora from Terms of Endearment, maybe Blanche Deveroux from Designing Women.]
Anyway, I was reminded of the joke during an e-mail exchange with Erin's oncologist, Dr. Heidi Russell earlier this week, when she wrote to comment on how nice Erin's images were on Monday (including the bone scan, for any of you who did not trust my amateur opinion in my post on Monday evening). She also noted that Erin's ANC had been lower than usual and wondered if Erin had been sick. Another possibility she suggested was transient neutropenia triggered by antibodies in Erin's IVIG. In either case, Dr. Russell, went on to say, "I wouldn't mind, though, if you had it re-checked in a few weeks, just to be sure it is resolving."
Since we ordinarily have blood draws once a month (and since I take the care and maintenance of Erin seriously, I tend to follow doctor's instructions rather literally--friends may remember when I thought that Dr. Russell's instructions to give Erin her medicine every day at the same time meant every day at 6:00 a.m., plus or minus two minutes. She gently corrected me--after a few months--that the same time every day meant plus or minus two hours), I wondered what "a few weeks" meant. I sent her a return message asking for clarification. This is what she wrote back:
So, in 20 to 30 days from last Monday, Erin will run by the local clinic and have her oil checked. Doctor's and lexicographer's orders.
My grandmother used to tell this joke:
A farmer asked his mule if he wanted some oats. The mule said a feeeeeew. Not funny at all, unless you're eight, and it's your grandmother, and she draws out the "few" to make it sound like a mule passing gas.
[Aside, for context: my grandmother on my mother's side was a character, long on flair, an able weaver of tales. She like to "keep the conversational ball rolling," which translated nicely means she could converse ably with a post. This being the South, you would recognize her by other women you may know from books, movies, or television: Aurora from Terms of Endearment, maybe Blanche Deveroux from Designing Women.]
Anyway, I was reminded of the joke during an e-mail exchange with Erin's oncologist, Dr. Heidi Russell earlier this week, when she wrote to comment on how nice Erin's images were on Monday (including the bone scan, for any of you who did not trust my amateur opinion in my post on Monday evening). She also noted that Erin's ANC had been lower than usual and wondered if Erin had been sick. Another possibility she suggested was transient neutropenia triggered by antibodies in Erin's IVIG. In either case, Dr. Russell, went on to say, "I wouldn't mind, though, if you had it re-checked in a few weeks, just to be sure it is resolving."
Since we ordinarily have blood draws once a month (and since I take the care and maintenance of Erin seriously, I tend to follow doctor's instructions rather literally--friends may remember when I thought that Dr. Russell's instructions to give Erin her medicine every day at the same time meant every day at 6:00 a.m., plus or minus two minutes. She gently corrected me--after a few months--that the same time every day meant plus or minus two hours), I wondered what "a few weeks" meant. I sent her a return message asking for clarification. This is what she wrote back:
I have attached the formal definitions of "few" below. I usually like theShe went on to write:
Merriam Webster Dictionary over the Random House, but alas, this came up first on
google.
few Pronunciation[fyoo] Pronunciation Key - Show IPA Pronunciation adjective, -er,
-est, noun, pronoun
-adjective
1.
not many but more than one: Few artists live luxuriously.
-noun
2.
(used with a plural verb) a small number or amount: Send me a few.
3.
the few, a special, limited number; the minority: That music appeals to the few.
-pronoun
4.
(used with a plural verb) a small number of persons or things: A dozen people
volunteered, but few have shown up.
-Idioms
5.
few and far between, at widely separated intervals; infrequent: In Nevada the towns
are few and far between.
6.
quite a few, a fairly large number; many: There were quite a few interesting things
to do.
_____
[Origin: bef. 900; ME fewe, OE féawe; c. Goth fawai; akin to L paucus few, paulus
little, pauper poor, Gk paûros little, few]
Dictionary.com Unabridged (v 1.1)
Based on the Random House Unabridged Dictionary, © Random House, Inc. 2006.
The HVR definition for clarification is 3 to 4 weeks (or 20 to 30 days ifFor some reason this just cracked me up. I really think you have to appreciate someone who did not have their sense of humor excised in medical school. Some pediatrics specialist fake a sense of humor by tickling children so that they can palpate them or pretend to see Big Bird or Sponge Bob in their ears when they are using their otoscope. But you don't always find someone willing to be cheeky. So, to her long list of accomplishments, I would like to give Dr. Heidi V. Russell some additional props for making me chuckle (of course we all know that's a lot easier to do the week after stable scans than the week before).
you'd rather)
So, in 20 to 30 days from last Monday, Erin will run by the local clinic and have her oil checked. Doctor's and lexicographer's orders.
Monday, January 7, 2008
Home and Stable
January 7, 2008
I want to collapse in bed, but not before letting you know that Erin's CT scan came back stable. Her counts were fine, and I'm not expecting any bad news from the bone scan results, which I will probably get back tomorrow.
I want to collapse in bed, but not before letting you know that Erin's CT scan came back stable. Her counts were fine, and I'm not expecting any bad news from the bone scan results, which I will probably get back tomorrow.
Saturday, January 5, 2008
Happy or Sad?
January 5, 2008
I easily fall into the trap of putting myself at the end of the queue, behind those I love: Walter, Erin, and Davis, my mom who lives next door, my students, my friends, my intrepid, but demanding pups, even my meager set of home page fans. I'm not complaining. I'm a pretty low maintenance chick. I take my responsibilities as a mother, wife, friend, and professor seriously. Having a full day (mostly) in the service of others is not a bad thing, all else considered.
So, what happens when Walter jets off to an academic conference in DC and Erin's buddy Clayton Sue snatches her away to Fort Worth for four days? Sure, Davis is still here, but our schedules don't mesh all that well (he stays up a tad later than me--three or four hour--and sleeps away a good portion of my waking hours). My mom is next door, of course, but she has her own schedule and only needs me to lift heavy things occasionally. School isn't in session; my friends are traveling. I have time on my hands.
What happens then? Woohoo! I can watch a t.v. show without considering whether it has adult themes. I have first choice on where to sit and what to eat (for instance I don't have to set a good example by eating all of my oatmeal). I can actually finish something I start, instead of putting it on hold to start supper or move the laundry along. I can wait until it's light out to walk Willie. If this state of the world went on very long, I could keep my house as neat as a pin, have all the family photos labeled and in albums, and the gardens denuded of weeds.
But I don't get completely caught up in this happy fantasy. I know that Erin has plans for overnight camp this summer, so I'll have a few days to do a re-enactment. But I'm not ready for her permanent departure, and that is the problem when you raise a child with cancer. The notion that Erin could be gone forever always colors my time alone. I love the sanctuary of my home and having it to myself from time to time, but I can't appreciate it entirely. It feels too selfish and perhaps too much like a reality I don't want to explore.
Somehow it's different with Walter and even Davis. I know that the world can change on a dime. Something tragic could happen to either one of them, unexpected and unwanted, that would rob me of them without warning. Still, when they are away, I don't look at their empty chairs, walk through their empty rooms, straighten their left behind gear, and wonder what it would be like to lose them. I have confidence (perhaps misplaced) that I will always have them. With Erin, I look and see a question mark.
For the record, I hope one day Erin will head out for college, leaving me (and Walter) to rattle around the house, with no cause to complain about her clutter or that her science experiments take up all the space on the bathroom vanity. But we don't want that to happen before August 2015.
So, this morning, I could be happy or sad. Happy that I can call the shots on how I will spend my morning without having to consider anyone else's wants, desires, or feelings. I don't have to cart Erin to yet another activity, time breakfast to fit everyone's schedules, or put my to do list at the bottom of the page. Yet I also have to look into Erin's currently tidy room and consider the ramifications of it staying tidy. . .and how, if she were gone for good, I would wish for mess, mess, and more mess.
I never linger on sad for long (at least sad brought on by my imagination). I will put my wistfulness behind me and enjoy my last few hours of freedom before it's back to my purpose in life, featuring the mom-role, the wife-role, the professor-role, the friend-role, the daughter-role, the constant-and-vigilant-guardian-of-the-world-from-the-destruction-wreaked-by-Willie role (oh, I forgot, I was never off the clock on that one). Here's a reminder of two of my great purposes in life, loving Erin and petting Willie (for the record, I'm not required to dress like either one of them, but occasionally I do, voluntarily):
I easily fall into the trap of putting myself at the end of the queue, behind those I love: Walter, Erin, and Davis, my mom who lives next door, my students, my friends, my intrepid, but demanding pups, even my meager set of home page fans. I'm not complaining. I'm a pretty low maintenance chick. I take my responsibilities as a mother, wife, friend, and professor seriously. Having a full day (mostly) in the service of others is not a bad thing, all else considered.
So, what happens when Walter jets off to an academic conference in DC and Erin's buddy Clayton Sue snatches her away to Fort Worth for four days? Sure, Davis is still here, but our schedules don't mesh all that well (he stays up a tad later than me--three or four hour--and sleeps away a good portion of my waking hours). My mom is next door, of course, but she has her own schedule and only needs me to lift heavy things occasionally. School isn't in session; my friends are traveling. I have time on my hands.
What happens then? Woohoo! I can watch a t.v. show without considering whether it has adult themes. I have first choice on where to sit and what to eat (for instance I don't have to set a good example by eating all of my oatmeal). I can actually finish something I start, instead of putting it on hold to start supper or move the laundry along. I can wait until it's light out to walk Willie. If this state of the world went on very long, I could keep my house as neat as a pin, have all the family photos labeled and in albums, and the gardens denuded of weeds.
But I don't get completely caught up in this happy fantasy. I know that Erin has plans for overnight camp this summer, so I'll have a few days to do a re-enactment. But I'm not ready for her permanent departure, and that is the problem when you raise a child with cancer. The notion that Erin could be gone forever always colors my time alone. I love the sanctuary of my home and having it to myself from time to time, but I can't appreciate it entirely. It feels too selfish and perhaps too much like a reality I don't want to explore.
Somehow it's different with Walter and even Davis. I know that the world can change on a dime. Something tragic could happen to either one of them, unexpected and unwanted, that would rob me of them without warning. Still, when they are away, I don't look at their empty chairs, walk through their empty rooms, straighten their left behind gear, and wonder what it would be like to lose them. I have confidence (perhaps misplaced) that I will always have them. With Erin, I look and see a question mark.
For the record, I hope one day Erin will head out for college, leaving me (and Walter) to rattle around the house, with no cause to complain about her clutter or that her science experiments take up all the space on the bathroom vanity. But we don't want that to happen before August 2015.
So, this morning, I could be happy or sad. Happy that I can call the shots on how I will spend my morning without having to consider anyone else's wants, desires, or feelings. I don't have to cart Erin to yet another activity, time breakfast to fit everyone's schedules, or put my to do list at the bottom of the page. Yet I also have to look into Erin's currently tidy room and consider the ramifications of it staying tidy. . .and how, if she were gone for good, I would wish for mess, mess, and more mess.
I never linger on sad for long (at least sad brought on by my imagination). I will put my wistfulness behind me and enjoy my last few hours of freedom before it's back to my purpose in life, featuring the mom-role, the wife-role, the professor-role, the friend-role, the daughter-role, the constant-and-vigilant-guardian-of-the-world-from-the-destruction-wreaked-by-Willie role (oh, I forgot, I was never off the clock on that one). Here's a reminder of two of my great purposes in life, loving Erin and petting Willie (for the record, I'm not required to dress like either one of them, but occasionally I do, voluntarily):
Tuesday, January 1, 2008
Un-Able to be Corriged
January 1, 2008
That's Willie: the dog unable to be corriged. I know all dogs do naughty things, but I was hoping for a better start to the new year than having Willie attempt to pull the ten pound pork loin onto the floor for a gnosh, while we entertained the new minister and his family in the living room. All I heard was his nails scrabbling on the formica (am I the only person in America that still has formica counter tops?), but I knew that scrabbling nails were just a precursor to incorrigible behavior. I was not wrong. When I punished Willie by putting him up in my bedroom (risking gnawing or worse among my personal possessions), the tender-hearted, dog-loving pastor plead his case (even though he knew not the exact nature of Willie's transgression). I told him that letting Willie lounge around on my bed and rest his chin on my down pillows wasn't exactly like sending him to Gitmo.
Disaster averted. Dinner saved. But hope for the new year dashed. Oh well, I wouldn't want to waste all my positive energy on getting my dog to behave when we have scans coming up.
That's Willie: the dog unable to be corriged. I know all dogs do naughty things, but I was hoping for a better start to the new year than having Willie attempt to pull the ten pound pork loin onto the floor for a gnosh, while we entertained the new minister and his family in the living room. All I heard was his nails scrabbling on the formica (am I the only person in America that still has formica counter tops?), but I knew that scrabbling nails were just a precursor to incorrigible behavior. I was not wrong. When I punished Willie by putting him up in my bedroom (risking gnawing or worse among my personal possessions), the tender-hearted, dog-loving pastor plead his case (even though he knew not the exact nature of Willie's transgression). I told him that letting Willie lounge around on my bed and rest his chin on my down pillows wasn't exactly like sending him to Gitmo.
Disaster averted. Dinner saved. But hope for the new year dashed. Oh well, I wouldn't want to waste all my positive energy on getting my dog to behave when we have scans coming up.
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