September 12, 2010
Friends all over the country have done a much better job calling awareness to Pediatric Cancer Awareness Month. There was even a letter in my local paper today, AND I DIDN'T HAVE TO WRITE IT. Even President Obama outdid me, signing a proclamation last Thursday:
http://www.whitehouse.gov/the-press-office/2010/09/10/presidential-proclamation-childhood-cancer-awareness-month
I'm going to do my part this Friday and jump back into the lanyard game with both feet. I know that Bryan High has an in-town football game (come early and you can still make kick-off), but Rudder's game is out of town and Consol has an off week. A&M is in-town against Florida International, but that still frees your Friday afternoon/evening up for fun and friendship.
It has been way too long since I have spent time with my beading friends. What better way to to spend time than to do something you like that creates beauty and also does good in the world?
Showing posts with label Advocacy. Show all posts
Showing posts with label Advocacy. Show all posts
Sunday, September 12, 2010
Friday, May 2, 2008
Conehead, the Barbarian No More
May 2, 2008
Willie still has his contact lens (until Monday), but the cone came off first thing this morning after nine style-filled days. His reaction really reminded me of the early years of Walter and my marriage. For many years in our early married life, Walter and I had ten-and-a half month contracts with the university at what I now consider laughably low wages. During the six-week summer stints when we had no pay checks (and practically nothing saved), we had to scrimp to make ends meet, dining on pasta and anything else we could afford on our stretched-thin budget. We became experts at making special combos from whatever we had in the house, until even our imaginative brains were taxed by the pantry that held only a jar of olives, a box of pearl barley, and a quart of V-8 juice. Once that regular fall paycheck hit the bank, all of our pent-up spending urges would come swooshing out, and salespeople at any shop we entered could boost their commissions.
When we took the cone off Willie this morning, he did two things in quick succession. First, he apologized profusely for whatever it was he had done to merit such a wicked punishment and swore he would never do whatever it was again. Second, he made a break for it, as if he had pent up urges of his own, much like our spending urges after a long summer. In this case, he had to investigate across every fence, under every out building, and through every narrow space that he had been barred from for the last week plus. Wearing the cone apparently adversely affected his hearing because in every test we ran this morning (regardless of pitch, decimal, or tone of voice), he did not return when called. When he finally dragged his sorry self back to the house, he was happy as a clam (can anyone tell me why in the world a clam would be happy and where this simile came from?).
Erin had the TAKS tests this week (a make-up reading test for having taken a pre-spring break vacation the first time it was offered and the fifth grade science test). Neither did any good for her back. Apparently, the teachers/principals/administrators want everyone taking the test to try their hardest. To discourage anyone from rushing through the test in the hopes of finishing early and having fun, no one is allowed to do anything except sit at their desk and read until every single person taking the test is done. One child got sent to the office for drawing at her desk (too much fun?). Since Erin was taking the re-test in reading with the students who had not passed the first time, everyone was very concerned that the test takers take their time. Erin finished her test at 11:25, but had to stay seated until 2:59 when the last child finished. Thursday, I was wiser and picked her up from school when she finished. Unfortunately, the Wednesday session had wreaked havoc with her back. In physical therapy on Thursday she was so knotted up that the whole session was heat and massage (no exercises, not even any stretching). Anyway, for a variety of reasons I'm glad to get this week behind us. Hopefully, she can continue making progress on her back after this setback.
We did manage to turn Thursday into a productive day. With Davis home for a couple of days and Erin out of school over the lunch hour, we made it a family event to attend the opening day of Gina's. For those of you wondering if the new Gina's would be as good as the old Gina's. . .all I can say is try it. We're going back (Leslie, do you want to meet there after church on Sunday?).
I'm going to end with a story that some of you will think I have made up. I swear everything I'm about to write is true and totally Erin.
At breakfast the other day, Erin started asking roundabout questions about her Make-A-Wish trip. After a few exchanges, I gleaned that she was trying to figure out if she could ever have a second wish. I figured she was wrangling for another trip to Wyoming (which was going to have to come on our own dime next time). When I finally asked her what she had in mind, if she ever did have another wish. She said she would ask to meet all the Senators and Representatives in Washington personally, so she could ask them to support the Conquer Childhood Cancer Act. I told her that it probably wouldn't do much good to meet them all, because she wasn't their constituent. So she amended her wish, and said that she wished she could meet Senator Kay Bailey Hutchison in person to tell her about the bill and ask her to support it. I told her that was a good idea. Then she looked at me and said, "I think the Senator doesn't support the bill because she's not informed. And I think she's not informed because her staff is incompetent." Another adult at the table said, that that wasn't true. She didn't support the bill because she was a [and he named something that starts with trog and rhymes with lodyte]. Anyway, I had to agree with Erin's assessment. I don't think the bill is on the Senator's radar at all. This would be a good time to go to my April 11 entry and refresh your memory about how to contact legislative aids.
Willie still has his contact lens (until Monday), but the cone came off first thing this morning after nine style-filled days. His reaction really reminded me of the early years of Walter and my marriage. For many years in our early married life, Walter and I had ten-and-a half month contracts with the university at what I now consider laughably low wages. During the six-week summer stints when we had no pay checks (and practically nothing saved), we had to scrimp to make ends meet, dining on pasta and anything else we could afford on our stretched-thin budget. We became experts at making special combos from whatever we had in the house, until even our imaginative brains were taxed by the pantry that held only a jar of olives, a box of pearl barley, and a quart of V-8 juice. Once that regular fall paycheck hit the bank, all of our pent-up spending urges would come swooshing out, and salespeople at any shop we entered could boost their commissions.
When we took the cone off Willie this morning, he did two things in quick succession. First, he apologized profusely for whatever it was he had done to merit such a wicked punishment and swore he would never do whatever it was again. Second, he made a break for it, as if he had pent up urges of his own, much like our spending urges after a long summer. In this case, he had to investigate across every fence, under every out building, and through every narrow space that he had been barred from for the last week plus. Wearing the cone apparently adversely affected his hearing because in every test we ran this morning (regardless of pitch, decimal, or tone of voice), he did not return when called. When he finally dragged his sorry self back to the house, he was happy as a clam (can anyone tell me why in the world a clam would be happy and where this simile came from?).
Erin had the TAKS tests this week (a make-up reading test for having taken a pre-spring break vacation the first time it was offered and the fifth grade science test). Neither did any good for her back. Apparently, the teachers/principals/administrators want everyone taking the test to try their hardest. To discourage anyone from rushing through the test in the hopes of finishing early and having fun, no one is allowed to do anything except sit at their desk and read until every single person taking the test is done. One child got sent to the office for drawing at her desk (too much fun?). Since Erin was taking the re-test in reading with the students who had not passed the first time, everyone was very concerned that the test takers take their time. Erin finished her test at 11:25, but had to stay seated until 2:59 when the last child finished. Thursday, I was wiser and picked her up from school when she finished. Unfortunately, the Wednesday session had wreaked havoc with her back. In physical therapy on Thursday she was so knotted up that the whole session was heat and massage (no exercises, not even any stretching). Anyway, for a variety of reasons I'm glad to get this week behind us. Hopefully, she can continue making progress on her back after this setback.
We did manage to turn Thursday into a productive day. With Davis home for a couple of days and Erin out of school over the lunch hour, we made it a family event to attend the opening day of Gina's. For those of you wondering if the new Gina's would be as good as the old Gina's. . .all I can say is try it. We're going back (Leslie, do you want to meet there after church on Sunday?).
I'm going to end with a story that some of you will think I have made up. I swear everything I'm about to write is true and totally Erin.
At breakfast the other day, Erin started asking roundabout questions about her Make-A-Wish trip. After a few exchanges, I gleaned that she was trying to figure out if she could ever have a second wish. I figured she was wrangling for another trip to Wyoming (which was going to have to come on our own dime next time). When I finally asked her what she had in mind, if she ever did have another wish. She said she would ask to meet all the Senators and Representatives in Washington personally, so she could ask them to support the Conquer Childhood Cancer Act. I told her that it probably wouldn't do much good to meet them all, because she wasn't their constituent. So she amended her wish, and said that she wished she could meet Senator Kay Bailey Hutchison in person to tell her about the bill and ask her to support it. I told her that was a good idea. Then she looked at me and said, "I think the Senator doesn't support the bill because she's not informed. And I think she's not informed because her staff is incompetent." Another adult at the table said, that that wasn't true. She didn't support the bill because she was a [and he named something that starts with trog and rhymes with lodyte]. Anyway, I had to agree with Erin's assessment. I don't think the bill is on the Senator's radar at all. This would be a good time to go to my April 11 entry and refresh your memory about how to contact legislative aids.
Friday, April 18, 2008
60
April 18, 2008
Give a shout! Thanks to Wayne Allard, Republican Senator from Colorado, and Claire McCaskill, Democratic Senator from Missouri (who both signed on as co-sponsors yesterday), the number of Senate co-sponsors for the Conquer Childhood Cancer Act now stands at 60! Who says that politics has to be polarizing. Thoughtful and compassionate people from both sides of the aisle can see the merits of this bill and take a stand to cooperate. Isn't America great?
I do not know when this bill will get to the floor, but it now has enough support to pass in the Senate. And as I said yesterday, we are one supporter away from a majority in the House (although the bill is still in subcommittee as far as I know. . .come out, come out wherever you are).
This is progress.
Give a shout! Thanks to Wayne Allard, Republican Senator from Colorado, and Claire McCaskill, Democratic Senator from Missouri (who both signed on as co-sponsors yesterday), the number of Senate co-sponsors for the Conquer Childhood Cancer Act now stands at 60! Who says that politics has to be polarizing. Thoughtful and compassionate people from both sides of the aisle can see the merits of this bill and take a stand to cooperate. Isn't America great?
I do not know when this bill will get to the floor, but it now has enough support to pass in the Senate. And as I said yesterday, we are one supporter away from a majority in the House (although the bill is still in subcommittee as far as I know. . .come out, come out wherever you are).
This is progress.
Friday, April 11, 2008
You Have to Know the Rules
April 11, 2008
As I fumbled around the bedroom this morning, looking for suitable attire for a parent-teacher conference first thing, I heard Walter talking downstairs in the kitchen. It seemed unlikely that Erin was awake already, and I hadn't heard the phone ring, so I listened more closely. I heard the following one-sided conversation:
"If you you want to live peaceably in this house, Teddy, you have to know the rules. I always give Luke his medicines first. Your job is to stay out of Luke's way so that he doesn't mistake you for one of his pills and out from under my feet so I don't step on you and squash you. Then I will arrange all the bowls on the counter and fill them with dry food. . ."
Walter proceeded to explain to Teddy the exact routine he followed every morning getting the dogs fed and ready for their longer walk (which I perform, when I come downstairs) with special pointers on what Teddy's job was at each juncture. I know we all feel more confident knowing how we fit into the larger picture.
Teddy was a little behind the curve, because for her first two weeks she had been sleeping in until we rousted her for breakfast. This morning, she decided to join in the early morning dog party, and for some reason thought her very presence would shoot her to the front of the chow line. Now she knows that there is a greater scheme into which she needs to fit. As best I can tell she understood it all perfectly.
It looks like Erin will survive what has been an un-fun week. She hasn't slept well this week, mainly because of various aches and pains. She made enough progress through the week at physical therapy and with her home exercises that she lasted about an hour at soccer practice last night. She is starting to get frustrated at the slow pace of it all. I think we'll head to the park after school today, and of course, she has Tiffany's birthday slumber party tonight, so I guess the week will end less drearily than it started.
I've had some messages from people outside of Texas looking for info about how to contact their Senator or Representatives legislative aide for health directly.
Here is the e-mail convention for all Senate staffers:
If the person you are trying to e-mail is named Betty Brown and she works for Senator Beebop, you would write her at Betty_Brown@Beebop.senate.gov
Here is the e-mail convention for all Representative staffers:
If the person you are trying to e-mail is named Bobby Black, and he works for Representative Hohum, you would write him at Bobby.Black@mail.house.gov
You can call the DC office and ask the staffer's name or you can go to this link. If you enter your zip code (if your zip has more than one representative you may have to put in your more specific address) and enter, the page will return links to both of your senators and your representative. Click on the person you are interested in. On this new page you will see his or her picture. Under the picture are three buttons "bio & contact info," "send message," and "staff members." Click on "staff members" and find someone who does Health. Then you have the name you need.
Write now, right now.
As I fumbled around the bedroom this morning, looking for suitable attire for a parent-teacher conference first thing, I heard Walter talking downstairs in the kitchen. It seemed unlikely that Erin was awake already, and I hadn't heard the phone ring, so I listened more closely. I heard the following one-sided conversation:
"If you you want to live peaceably in this house, Teddy, you have to know the rules. I always give Luke his medicines first. Your job is to stay out of Luke's way so that he doesn't mistake you for one of his pills and out from under my feet so I don't step on you and squash you. Then I will arrange all the bowls on the counter and fill them with dry food. . ."
Walter proceeded to explain to Teddy the exact routine he followed every morning getting the dogs fed and ready for their longer walk (which I perform, when I come downstairs) with special pointers on what Teddy's job was at each juncture. I know we all feel more confident knowing how we fit into the larger picture.
Teddy was a little behind the curve, because for her first two weeks she had been sleeping in until we rousted her for breakfast. This morning, she decided to join in the early morning dog party, and for some reason thought her very presence would shoot her to the front of the chow line. Now she knows that there is a greater scheme into which she needs to fit. As best I can tell she understood it all perfectly.
It looks like Erin will survive what has been an un-fun week. She hasn't slept well this week, mainly because of various aches and pains. She made enough progress through the week at physical therapy and with her home exercises that she lasted about an hour at soccer practice last night. She is starting to get frustrated at the slow pace of it all. I think we'll head to the park after school today, and of course, she has Tiffany's birthday slumber party tonight, so I guess the week will end less drearily than it started.
I've had some messages from people outside of Texas looking for info about how to contact their Senator or Representatives legislative aide for health directly.
Here is the e-mail convention for all Senate staffers:
If the person you are trying to e-mail is named Betty Brown and she works for Senator Beebop, you would write her at Betty_Brown@Beebop.senate.gov
Here is the e-mail convention for all Representative staffers:
If the person you are trying to e-mail is named Bobby Black, and he works for Representative Hohum, you would write him at Bobby.Black@mail.house.gov
You can call the DC office and ask the staffer's name or you can go to this link. If you enter your zip code (if your zip has more than one representative you may have to put in your more specific address) and enter, the page will return links to both of your senators and your representative. Click on the person you are interested in. On this new page you will see his or her picture. Under the picture are three buttons "bio & contact info," "send message," and "staff members." Click on "staff members" and find someone who does Health. Then you have the name you need.
Write now, right now.
Wednesday, April 9, 2008
The Gang
April 9, 2008
Do you remember Fat Albert and his Gang? Not the movie, released in 2004, which was live-action, but the original Saturday morning cartoon from the early 1970's.
If you watch this video clip of the show's opening theme song, you will get a little glimpse of how I have felt recently (note especially the images at the 18-20 second mark). No, I haven't reached the portly proportions of Fat Albert nor the comic genius of Bill Cosby. As a youngster, I would watch the cartoon of the Cosby gang (they were a gang, not a club, back when being a gang wasn't a life-threatening proposition) walking down the sidewalk and just marvel at their motley-ness. Their personalities showed through their gait, and even though they were each unique and also essentially flawed (think about it, their names were Weird Harold, Mush Mouth, and Dumb Donald, to name the ones I can remember), they had each other's backs and had a great time moving through life.
Fast forward to Vickie's life. Every day (usually several times a day) I head down the road with a collection of people and animals. Picture me, with Erin skipping rope, or dribbling a soccer ball, or adorning her hair and clothes with daisy chains and wildflowers she has collected from the road side. Add in Walter, usually wearing a fedora, but sometimes in a bucket hat and my mother, either nattily dressed for work or more casual in yard work duds. Now picture Willie, our two-year old Rhodesian Ridgeback, alternating between racing ahead, leaping after crickets and lizards in the tall grass, and trotting along with the group. Put Uma, our overweight Welsh corgi, into your mental image, short legs completely disproportional to her giant meatloaf shaped body, but always walking with a princess-like prance in her step. Don't forget Luke, our fifteen-year-old yellow lab, who has extreme arthritis and no cartilage left in his rear stifles (knees). He can barely get up and down the road, but he always has an eager look in his eyes and a smile on his face. Round out the picture with Teddy, who at 10 pounds with a shaved body, full-lion mane, and "C"-shaped gait, spends a great deal of time trying not to get stepped on. Sometimes we add the neighbors' weiner dog puppies for a few minutes, and sometimes a weimaraner, sleek but dumb, and her blind-in-one-eye golden retriever buddy join us.
Can you tell why I think of myself as Fat Albert or at least the leader of his gang? A motlier crew I can't imagine, nor can I imagine not having them and not loving them. It's a comic image, yet, it is that image that metaphorically captures the essence of Erin's cancer experience, and perhaps of humanity itself. None of us are perfect. None of us are whole. If we think we are, it's probably an illusion. Instead, we are made up of many others who surround us and support us. We are made up of those we share the road with. . .those willing to be in our gang. Today, I owe a thanks to all of you for being part of The Gang. Thanks for walking down the road with us, even if you're a little ahead or a little behind. . . even if you have your own pace and gait. Remember we're together, and I appreciate it.
Now, for other updates:
I wish I could tell you that Senator Hutchinson has seen the light and signed on to the Conquer Childhood Cancer Act. Not yet. I do appreciate your efforts and hope you are not too fatigued to fight on. Hans Weberling's mom, Lara, went to the effort to create a touching and powerful powerpoint presentation, which I'm sure will be convincing to anyone who views it. I guess the trick is to get someone who matters to take the time (it's only 14 slides). If you have a chance, stop by Han's website. He has just started his sixth and last round of accutane and is nearing the end of treatment. We hope, like his family does, that this will be the final chapter in his face-off with neuroblastoma.
To continue with happy news: The long weekend with Davis and his buddy and co-math major Paul Munger from Portland, Oregon went great. They both got enough to eat and enough sleep. I even caught them working math problems a couple of times. (As a side note, I posted on The Davis Report that Davis had accepted a position as a math intern at the University of Pittsburgh medical school for the summer and wondered if I had any readers from that general area who might be willing to be an emergency contact for him this summer, May 19-July 25. I'm also looking for a similar person or persons in Budapest, Hungary for the fall when he studies abroad, but I'm guessing that's a long shot.)
Erin kept it pretty low key all weekend (forced into a lower key than desired, by her mother, who is trying to create ideal conditions for back healing. This included nixed plans for ice skating at her friend Andy's birthday party. Drat!) She did some rather impressive art for Davis and Paul to take back to their dorms. When I say impressive what I mean is that she used every single marker she owns in each of the 2 ft X 2 ft pieces. I didn't count how many markers she used, but when she laid them out (side by side, not end to end), they stretched across her entire room (I'm guessing about ten feet, maybe twelve).
We culminated the weekend with an outing to the Texas A&M baseball game, where Erin and the other members of the Bryan Honor Choir sang the national anthem. We didn't stay the whole game because we also wanted to take Davis out to dinner for his birthday. We momentarily thought we had made a bad logistical choice of restaurants, since A&M's biggest formal was Saturday night and a generous portion of the couples appeared to have chosen Cenare's as their pre-dance eatery. Luckily, we had a great server, who got our orders through and we didn't end up starving while we waited for our food to clear the kitchen congestion.
Unfortunately, whatever gain we made on Erin's back by avoiding ice skating were undone yesterday, when Erin had to stay seated at her desk most of the day for TAKS testing. No PE. No recess. By the time she got home her back was cramping and grabbing. Kelli, the physical therapist, gave her some pain relief with wet heat, a deep message, and some light stretches, but not enough to clear her for soccer practice last night. With South Texas Cup play approaching on the first weekend of May, Erin rues every moment that she has to sit out (and Erin's parents rue every moment, even the simplest soccer practice, that cancer robs her of).
This weekend promises to be an upbeat one. Aunt Kat and Emma are coming back, even though they just visited. Our mom is hosting a party for her master naturalist group. On Sunday, Erin has her spring piano recital.
Do you remember Fat Albert and his Gang? Not the movie, released in 2004, which was live-action, but the original Saturday morning cartoon from the early 1970's.
If you watch this video clip of the show's opening theme song, you will get a little glimpse of how I have felt recently (note especially the images at the 18-20 second mark). No, I haven't reached the portly proportions of Fat Albert nor the comic genius of Bill Cosby. As a youngster, I would watch the cartoon of the Cosby gang (they were a gang, not a club, back when being a gang wasn't a life-threatening proposition) walking down the sidewalk and just marvel at their motley-ness. Their personalities showed through their gait, and even though they were each unique and also essentially flawed (think about it, their names were Weird Harold, Mush Mouth, and Dumb Donald, to name the ones I can remember), they had each other's backs and had a great time moving through life.
Fast forward to Vickie's life. Every day (usually several times a day) I head down the road with a collection of people and animals. Picture me, with Erin skipping rope, or dribbling a soccer ball, or adorning her hair and clothes with daisy chains and wildflowers she has collected from the road side. Add in Walter, usually wearing a fedora, but sometimes in a bucket hat and my mother, either nattily dressed for work or more casual in yard work duds. Now picture Willie, our two-year old Rhodesian Ridgeback, alternating between racing ahead, leaping after crickets and lizards in the tall grass, and trotting along with the group. Put Uma, our overweight Welsh corgi, into your mental image, short legs completely disproportional to her giant meatloaf shaped body, but always walking with a princess-like prance in her step. Don't forget Luke, our fifteen-year-old yellow lab, who has extreme arthritis and no cartilage left in his rear stifles (knees). He can barely get up and down the road, but he always has an eager look in his eyes and a smile on his face. Round out the picture with Teddy, who at 10 pounds with a shaved body, full-lion mane, and "C"-shaped gait, spends a great deal of time trying not to get stepped on. Sometimes we add the neighbors' weiner dog puppies for a few minutes, and sometimes a weimaraner, sleek but dumb, and her blind-in-one-eye golden retriever buddy join us.
Can you tell why I think of myself as Fat Albert or at least the leader of his gang? A motlier crew I can't imagine, nor can I imagine not having them and not loving them. It's a comic image, yet, it is that image that metaphorically captures the essence of Erin's cancer experience, and perhaps of humanity itself. None of us are perfect. None of us are whole. If we think we are, it's probably an illusion. Instead, we are made up of many others who surround us and support us. We are made up of those we share the road with. . .those willing to be in our gang. Today, I owe a thanks to all of you for being part of The Gang. Thanks for walking down the road with us, even if you're a little ahead or a little behind. . . even if you have your own pace and gait. Remember we're together, and I appreciate it.
Now, for other updates:
I wish I could tell you that Senator Hutchinson has seen the light and signed on to the Conquer Childhood Cancer Act. Not yet. I do appreciate your efforts and hope you are not too fatigued to fight on. Hans Weberling's mom, Lara, went to the effort to create a touching and powerful powerpoint presentation, which I'm sure will be convincing to anyone who views it. I guess the trick is to get someone who matters to take the time (it's only 14 slides). If you have a chance, stop by Han's website. He has just started his sixth and last round of accutane and is nearing the end of treatment. We hope, like his family does, that this will be the final chapter in his face-off with neuroblastoma.
To continue with happy news: The long weekend with Davis and his buddy and co-math major Paul Munger from Portland, Oregon went great. They both got enough to eat and enough sleep. I even caught them working math problems a couple of times. (As a side note, I posted on The Davis Report that Davis had accepted a position as a math intern at the University of Pittsburgh medical school for the summer and wondered if I had any readers from that general area who might be willing to be an emergency contact for him this summer, May 19-July 25. I'm also looking for a similar person or persons in Budapest, Hungary for the fall when he studies abroad, but I'm guessing that's a long shot.)
Erin kept it pretty low key all weekend (forced into a lower key than desired, by her mother, who is trying to create ideal conditions for back healing. This included nixed plans for ice skating at her friend Andy's birthday party. Drat!) She did some rather impressive art for Davis and Paul to take back to their dorms. When I say impressive what I mean is that she used every single marker she owns in each of the 2 ft X 2 ft pieces. I didn't count how many markers she used, but when she laid them out (side by side, not end to end), they stretched across her entire room (I'm guessing about ten feet, maybe twelve).
We culminated the weekend with an outing to the Texas A&M baseball game, where Erin and the other members of the Bryan Honor Choir sang the national anthem. We didn't stay the whole game because we also wanted to take Davis out to dinner for his birthday. We momentarily thought we had made a bad logistical choice of restaurants, since A&M's biggest formal was Saturday night and a generous portion of the couples appeared to have chosen Cenare's as their pre-dance eatery. Luckily, we had a great server, who got our orders through and we didn't end up starving while we waited for our food to clear the kitchen congestion.
Unfortunately, whatever gain we made on Erin's back by avoiding ice skating were undone yesterday, when Erin had to stay seated at her desk most of the day for TAKS testing. No PE. No recess. By the time she got home her back was cramping and grabbing. Kelli, the physical therapist, gave her some pain relief with wet heat, a deep message, and some light stretches, but not enough to clear her for soccer practice last night. With South Texas Cup play approaching on the first weekend of May, Erin rues every moment that she has to sit out (and Erin's parents rue every moment, even the simplest soccer practice, that cancer robs her of).
This weekend promises to be an upbeat one. Aunt Kat and Emma are coming back, even though they just visited. Our mom is hosting a party for her master naturalist group. On Sunday, Erin has her spring piano recital.
Wednesday, April 2, 2008
Looking for Action
April 2, 2008
Erin fans,
It's time for another big push on the Conquer Childhood Cancer Act (I put this link in so that you can see exactly what I'm asking you to support). I need you, but it's not the same old, same old. I have a new page for the play book.
Here's the background:
We now have the support of 58 of the 60 Senators we need to get a vote on the Conquer Childhood Cancer Act. You can check here to see if both your state's Senators have signed on. If you are from Texas, don't bother. Senator Hutchison is not there. . .yet. We also have 212 (need 218) Representatives signed on. Doesn't this just FEEL so close?
Anyway, you can use the traditional way of contacting the members directly. Here are a pair of links to the CureSearch website that will help you with some text (and addresses, of course) if you are at a loss for words:
To your Representative
To your Senator
Or you can try to by-pass the Congressional email system which often is automated or staffed by lower level employees who may only record a check on an issue for or against, generate an appropriate form letter response, and send your well-thoughtout missive to the recycle bin rather than alerting your Congress person about your preferences.
For Texans I recommend contacting Senator Kay Bailey Hutchison's legislative aide for health issues. She is Cameron Krier. She is relatively new, but I have some evidence that she "gets it" with regard to this passion of mine. You could also call the Senator's office in DC at 202-224-5922 and ask to speak to her directly.
If you are not from Texas, you could probably find your senator's legislative aide for health on their official web page. If not, call the office and ask who it is. These people are very influential with their Senators because they do the research and make recommendations to their bosses.
Here is why I am hopeful that a new effort on our part might do some good. Senator Hutchison is working with Senator Ted Kennedy to write a big cancer bill and she has recently (3/7) signed on as a co-sponsor of a breast cancer bill, Breast Cancer and Environmental Research Act of 2007, S579 that is very similar to the Conquer Childhood Cancer Act and is in the same position as ours (it has been approved by the HELP Committee). That’s actually the strongest argument to getting her to co-sponsor the Conquer Childhood Cancer Act, if breast cancer, why not children? (The cynic in me says that they are not the same because people with breasts and those who love people with breasts can vote and children can't, but I'm trying to shake that view and give her a chance to do the right thing.)
Let's push this over the edge. Call or write KBH or do what I did, write Cameron Krier. Tell her how important it is. I want to be doing the celebration dance by next week!
I'm leaving you with one more link. I found this when I was trying to building a coherent letter to Ms. Krier. Its a 2006 article about why childhood cancer drug development needs more help. Very interesting (and easy to read).
By the way, here is what I wrote:
Erin fans,
It's time for another big push on the Conquer Childhood Cancer Act (I put this link in so that you can see exactly what I'm asking you to support). I need you, but it's not the same old, same old. I have a new page for the play book.
Here's the background:
We now have the support of 58 of the 60 Senators we need to get a vote on the Conquer Childhood Cancer Act. You can check here to see if both your state's Senators have signed on. If you are from Texas, don't bother. Senator Hutchison is not there. . .yet. We also have 212 (need 218) Representatives signed on. Doesn't this just FEEL so close?
Anyway, you can use the traditional way of contacting the members directly. Here are a pair of links to the CureSearch website that will help you with some text (and addresses, of course) if you are at a loss for words:
To your Representative
To your Senator
Or you can try to by-pass the Congressional email system which often is automated or staffed by lower level employees who may only record a check on an issue for or against, generate an appropriate form letter response, and send your well-thoughtout missive to the recycle bin rather than alerting your Congress person about your preferences.
For Texans I recommend contacting Senator Kay Bailey Hutchison's legislative aide for health issues. She is Cameron Krier. She is relatively new, but I have some evidence that she "gets it" with regard to this passion of mine. You could also call the Senator's office in DC at 202-224-5922 and ask to speak to her directly.
If you are not from Texas, you could probably find your senator's legislative aide for health on their official web page. If not, call the office and ask who it is. These people are very influential with their Senators because they do the research and make recommendations to their bosses.
Here is why I am hopeful that a new effort on our part might do some good. Senator Hutchison is working with Senator Ted Kennedy to write a big cancer bill and she has recently (3/7) signed on as a co-sponsor of a breast cancer bill, Breast Cancer and Environmental Research Act of 2007, S579 that is very similar to the Conquer Childhood Cancer Act and is in the same position as ours (it has been approved by the HELP Committee). That’s actually the strongest argument to getting her to co-sponsor the Conquer Childhood Cancer Act, if breast cancer, why not children? (The cynic in me says that they are not the same because people with breasts and those who love people with breasts can vote and children can't, but I'm trying to shake that view and give her a chance to do the right thing.)
Let's push this over the edge. Call or write KBH or do what I did, write Cameron Krier. Tell her how important it is. I want to be doing the celebration dance by next week!
I'm leaving you with one more link. I found this when I was trying to building a coherent letter to Ms. Krier. Its a 2006 article about why childhood cancer drug development needs more help. Very interesting (and easy to read).
By the way, here is what I wrote:
Dear Ms. Krier,
I understand that you are the current LA for health issues for Senator Hutchison and as such would be the most informed person on her staff to consider the merits of S. 911—the Conquer Childhood Cancer Act. This bill, proposed jointly last year by Senator Jack Reed and Senator Norm Coleman, passed out of the HELP committee without amendment in December and has garnered the support of 58 Senate co-sponsors. It proposes to amend the Public Health Service Act to advance medical research and treatments into pediatric cancer and authorizes $30 million annually for five years.
There are both rational and emotional reasons to support this bill. Most childhood cancers arise without warning and seemingly without cause. Most can't be predicted or prevented. The cruel hand of fate regularly reaches down and taps families on the shoulder from all walks of life: It has visited the families of bankers and builders, farmers and financial traders, doctors and deliverymen, teachers and lawyers, and so many others. There is so much left to learn and so many lives to save. Unfortunately, pharmaceutical companies don't see much chance for profit with children, and most private fund raising for cancer (think American Cancer Society, Lance Armstrong Foundation, or even the Susan Komen Breast Cancer Foundation) overlooks children almost entirely. This leaves two options for raising research dollars: grieving and stressed parents and our elected officials.
One amazing thing that the Senator may not know about pediatric cancer care in this country is that children and their parents overwhelmingly elect to participate in scientific cancer trials as part or all of their treatment. This contrasts with fewer than 3% of adults with cancer who choose clinical trials as part of their treatment plans. With the vast majority of children with cancer participating in clinical trials, progress towards more effective treatment can be more systematic, leading to more lives saved and fewer negative long-term effects for survivors. Unfortunately, funding for clinical trials has remained steady or even dropped over the last several years, making it more difficult for children to take advantage of the latest scientific breakthroughs. And, as I mentioned before, the smaller market size (and thus, the profit potential) for developing and testing drugs for children does not meet the ROI requirements for most private drug companies.
Some might argue that children can benefit from investments made to treat adult cancers. There are many weaknesses in this argument, including the fact that many children’s cancers are different than adult cancers on a phenotypic and molecular level. Beyond that, they behave differently, suggesting that treatment paths may need to follow different routes. Even for children’s cancers that may be amenable to treatments developed for adult cancers, problems exist making those treatments available for children. Of the 120 new cancer therapies for adults approved by the FDA between 1948 and January 2003, only 30 have shown use in children. Of those 30 drugs, only 15 acquired any labeling for pediatric use during that same 55-year period. I am aware of only 2 new drugs approved for pediatric oncology only in my lifetime. (If you are interested in learning more about problems with pediatric cancer drug development, I encourage you to following this link to a 2006 article in Molecular Cancer Therapeutics.)
I believe strongly in the ingenuity of our scientists and researchers to solve the health problems facing Americans. I just don’t believe our children show up on the radar often enough. My own child has fought cancer for half her ten-year-old life. There is no cure for her disease, relapsed neuroblastoma. She depends on drugs developed for adults three or four decades ago to keep her tumors at bay. Despite her cruel prognosis, she attacks and relishes life in ways that I wish you could witness. If you saw the way Erin and other cancer children live their lives, you could not possibly let Senator Hutchison stand on the sideline in this battle. Erin wrote her own letter to the Senator a few weeks ago. I think you can sense how important this issue is to us.
Thank you for weighing the merits of this bill. I hope you can recommend that the Senator sign on as a co-sponsor to this bill. Please allow me to address any further questions you may have about the bill or the need it fills.
Sincerely,
Vickie Buenger
(979) 820-1755
http://erinbuenger.blogspot.com
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?
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.
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, October 12, 2007
Big Week
October 12, 2007
QUICK UPDATE (TWO ITEMS):
The fifth grade trip to Camp Allen exceeded expectations all around: no mosquitoes, mild weather (well, honestly, it was hot with a breeze, but not oppressive), excellent food (at camp? you may ask, but I understand Camp Allen has a well-deserved reputation for serving tasty meals), a crackling camp evening fire with humor geared to 10 year olds, and a copious amounts of free time. When was the last time a school field trip you attended could claim all of those things?
Erin also made a successful bid for student council at her school. Her speech was too funny--long on earnestness and honesty, short on zip, and definitely lacking in sound bites. I don't know exactly what she ended up saying, but it went something like this:
"I wish I could promise that if you elect me to the student council I will get us recess all day, field trips to Disney World, and better food in the cafeteria, but the student council can't do those things. If you elect me, I will listen to you, like Chet Edwards listened to me went I went to Washington, D.C. and work to make our school a better place."
Despite not overpromising anything, she won in a run-off and was exceedingly pleased. Erin also brought home another stellar report card with week, stayed on top of her homework, scored twice during soccer practice last night, and is improving on her Number Sense practice. In addition, she rode horses, sang, rang bells, and played the piano. Mainly, she has just smiled her way through the week. If she can, you should, too.
Now, get back to work, literally ( I have students to teach in about an hour and you have some task or chore at your home or job that you need to attend to), but also in the bidness of cancer advocacy. For motivation, here is a picture of our trip to DC in June when Senator John Cornyn (in the suit at the left) got on board the Conquer Childhood Cancer Act. I sure would like to add a matching one with KBH!
This is a group of Texans who lobbied with us in Washington. Erin didn't want to wear the t-shirt everyone else was wearing because she thought "an outfit would make a better impression." The young man on the far right (with the knee brace) has Ewing's sarcoma. The rest of the group were mainly parents, siblings, and friends of children who had died from cancer and a couple of doctors and nurses who work with pediatric cancer patients. This is what the t-shirts say,
I sentiment we all can agree with.
QUICK UPDATE (TWO ITEMS):
- Congressman Chet Edwards with his whole family on speaker phone just called and spent fifteen minutes congratulating Erin on her student council election results. What a guy!
- Visit this website www.dontalmostgive.org and view the public service announcements linked there. The message really hit home for me. I know what the road to H-E-double toothpicks is paved with. I read or hear something and INTEND to follow up, do a good deed, write a letter, make a donation. Then the immediacy of my life takes over and I almost follow up, almost do a good deed, almost write a letter, almost make a donation. If this happens to you, too, let me give you a nudge. Here is a link to Han's webpage, where Han's mother has written an bang-up letter to our Senator. Take a look. Then, don't almost write--write.
The fifth grade trip to Camp Allen exceeded expectations all around: no mosquitoes, mild weather (well, honestly, it was hot with a breeze, but not oppressive), excellent food (at camp? you may ask, but I understand Camp Allen has a well-deserved reputation for serving tasty meals), a crackling camp evening fire with humor geared to 10 year olds, and a copious amounts of free time. When was the last time a school field trip you attended could claim all of those things?
Erin also made a successful bid for student council at her school. Her speech was too funny--long on earnestness and honesty, short on zip, and definitely lacking in sound bites. I don't know exactly what she ended up saying, but it went something like this:
"I wish I could promise that if you elect me to the student council I will get us recess all day, field trips to Disney World, and better food in the cafeteria, but the student council can't do those things. If you elect me, I will listen to you, like Chet Edwards listened to me went I went to Washington, D.C. and work to make our school a better place."
Despite not overpromising anything, she won in a run-off and was exceedingly pleased. Erin also brought home another stellar report card with week, stayed on top of her homework, scored twice during soccer practice last night, and is improving on her Number Sense practice. In addition, she rode horses, sang, rang bells, and played the piano. Mainly, she has just smiled her way through the week. If she can, you should, too.
Now, get back to work, literally ( I have students to teach in about an hour and you have some task or chore at your home or job that you need to attend to), but also in the bidness of cancer advocacy. For motivation, here is a picture of our trip to DC in June when Senator John Cornyn (in the suit at the left) got on board the Conquer Childhood Cancer Act. I sure would like to add a matching one with KBH!
This is a group of Texans who lobbied with us in Washington. Erin didn't want to wear the t-shirt everyone else was wearing because she thought "an outfit would make a better impression." The young man on the far right (with the knee brace) has Ewing's sarcoma. The rest of the group were mainly parents, siblings, and friends of children who had died from cancer and a couple of doctors and nurses who work with pediatric cancer patients. This is what the t-shirts say,
I sentiment we all can agree with.
Monday, October 8, 2007
Calling All Texas Exes, Former Cheerleaders, Junior Leaguers, and Citizens of the Lone Star State
October 8, 2007
ADD ON THOUGHTS ABOUT KBH: When I have written Senator Hutchison the "canned" response I have received back indicates that she supports cancer research (but the support for legislation she lists only includes adult cancers) and that she would consider the Conquer Childhood Cancer Act if it ever comes up for a vote.
That's not good enough. Childhood cancer is not adult cancer. It has different characteristics, causes, and treatments. It needs its own funding and research. Even if everything that worked for adults also worked for children, children with cancer do not have fifteen or twenty years to wait for the promising drugs to go through three sets of adult trials, receive approval for adults, then go back into three more sets of pediatric trials, before they are finally approved for children.
Do not be put off by Senator Hutchison's nice, but ultimately hollow, words. We need a Senator willing to step up and fight for our children now.
Advocacy Update:
Folks of an age will remember Schoolhouse Rock and I'm Just a Bill. (Take a trip down memory lane by clicking on this link or this one that takes you to You Tube so you can watch the original music video:)
I'm just a bill.
Yes, I'm only a bill.
And I'm sitting here on Capitol Hill.
Well, it's a long, long journey
To the capital city.
It's a long, long wait
While I'm sitting in committee,
But I know I'll be a law some day
At least I hope and pray that I will
But today I am still just a bill.
That ditty, which tells of the long, drawn out process of how a bill becomes a law attempts to capture the circuitous, sometimes torturous route, but doesn't do the process half the justice it deserves. Case in point: since the Buengers went to Washington to lobby for the Conquer Childhood Cancer Act of 2007 back in June, it looks like not much has happened. The bill is still sitting in the same committees and subcommittees where they landed in March. . .BUT. . .
A lot has happened. Since then, as a result of massive and widespread lobbying by people like you and me, 150 Representatives and 41 Senators have signed on as co-sponsors (you may notice that 41 is awfully close to the 51-person majority the bill would need to successfully pass a floor vote).
What I understand will happen next (and I strongly believe that this will happen this month), is that Senator Ted Kennedy who chairs the committee where the bill (S.911) is sitting will ask for a Mark Up. The committee will then report the bill to the floor, and when it moves up in the schedule, the full Senate will vote on it. I also believe that once the Senate takes up the bill, the House Commerce and Energy Committee (H.R. 1553) will do so as well, following a very similar process.
If you have even a passing connection to one of the Title Categories above (Texas Ex, cheerleader, Junior Leaguer, Citizen of the Lone Start State), I need your help today. My heart is breaking because the senior Senator from the state of Texas, Senator Kay Bailey Hutchison has not signed on to the bill and will not say why, nor will she make suggestions that would make the bill more palatable to her. Given her special status in those Title Categories I thought that perhaps her peers (this is you!) might make an attempt to convince her that the time has come for her to get on board! Write her. Call her. Fax her.
DC phone: 202-224-5922
DC fax: 202-224-0776
Link to E-mail: http://hutchison.senate.gov/contact.html
ADD ON THOUGHTS ABOUT KBH: When I have written Senator Hutchison the "canned" response I have received back indicates that she supports cancer research (but the support for legislation she lists only includes adult cancers) and that she would consider the Conquer Childhood Cancer Act if it ever comes up for a vote.
That's not good enough. Childhood cancer is not adult cancer. It has different characteristics, causes, and treatments. It needs its own funding and research. Even if everything that worked for adults also worked for children, children with cancer do not have fifteen or twenty years to wait for the promising drugs to go through three sets of adult trials, receive approval for adults, then go back into three more sets of pediatric trials, before they are finally approved for children.
Do not be put off by Senator Hutchison's nice, but ultimately hollow, words. We need a Senator willing to step up and fight for our children now.
Advocacy Update:
Folks of an age will remember Schoolhouse Rock and I'm Just a Bill. (Take a trip down memory lane by clicking on this link or this one that takes you to You Tube so you can watch the original music video:)
I'm just a bill.
Yes, I'm only a bill.
And I'm sitting here on Capitol Hill.
Well, it's a long, long journey
To the capital city.
It's a long, long wait
While I'm sitting in committee,
But I know I'll be a law some day
At least I hope and pray that I will
But today I am still just a bill.
That ditty, which tells of the long, drawn out process of how a bill becomes a law attempts to capture the circuitous, sometimes torturous route, but doesn't do the process half the justice it deserves. Case in point: since the Buengers went to Washington to lobby for the Conquer Childhood Cancer Act of 2007 back in June, it looks like not much has happened. The bill is still sitting in the same committees and subcommittees where they landed in March. . .BUT. . .
A lot has happened. Since then, as a result of massive and widespread lobbying by people like you and me, 150 Representatives and 41 Senators have signed on as co-sponsors (you may notice that 41 is awfully close to the 51-person majority the bill would need to successfully pass a floor vote).
What I understand will happen next (and I strongly believe that this will happen this month), is that Senator Ted Kennedy who chairs the committee where the bill (S.911) is sitting will ask for a Mark Up. The committee will then report the bill to the floor, and when it moves up in the schedule, the full Senate will vote on it. I also believe that once the Senate takes up the bill, the House Commerce and Energy Committee (H.R. 1553) will do so as well, following a very similar process.
If you have even a passing connection to one of the Title Categories above (Texas Ex, cheerleader, Junior Leaguer, Citizen of the Lone Start State), I need your help today. My heart is breaking because the senior Senator from the state of Texas, Senator Kay Bailey Hutchison has not signed on to the bill and will not say why, nor will she make suggestions that would make the bill more palatable to her. Given her special status in those Title Categories I thought that perhaps her peers (this is you!) might make an attempt to convince her that the time has come for her to get on board! Write her. Call her. Fax her.
| Senator Kay Bailey Hutchison (R- TX) |
DC fax: 202-224-0776
Link to E-mail: http://hutchison.senate.gov/contact.html
It has been hard for childhood cancer to get the notice it deserves. Yet the years of life lost from childhood cancers are way up there, exceeded only by the two most common adult cancers.
Neuroblastoma, like many pediatric cancers, arises sporadically. It can't be predicted or prevented. As one parent summed it up: It's simply unexplainable." The cruel hand of fate regularly reaches down and taps families on the shoulder from all walks of life: It has visited the families of bankers and builders, farmers and financial traders, doctors and deliverymen, teachers and lawyers, and so many others. There is so much left to learn and so many lives to save. Unfortunately, pharmaceutical companies don't see much chance for profit with children, and most private fund raising for cancer (think American Cancer Society, Lance Armstrong Foundation, or even the Susan Komen Breast Cancer Foundation) overlook children almost entirely.
If you want more fodder for a letter, you can write me and I'll tell you more, or you can check the September 10th entry below for some handy facts, or visit the CureSearch website. The important thing is DON"T WAIT. Let's give her a chance to sign up as a co-sponsor before the committee takes it up.
Besides the advocacy bit, the Buengers are taking life at their usual pace. Erin hit Bryan High Homecoming on Friday night with "the other" Aaron, and apparently had a blast staying up past her parent's bedtime.
Saturday brought another tight loss (1-0) on the pitch, but we are all confident that if we continue to do things right, the victories will start adding up. Saturday night the soccer team descended upon the innocent home of one of her teammates (Sydney Jeter) for a slumberless birthday party. Erin was groggy and complaining when I picked her up early for Sunday school, but we had to get their since the children's choir was singing the anthem for World Communion Sunday. Tomorrow is the fifth grade classes' all day field trip to Camp Allen (I have gotten sucked into serving as a half-day chaperone. . .I'll tell you about the mosquitofest later).
In between these activities, Erin has busily created a large pile of campaign posters and paraphernalia for her big run for Student Council. Since almost everyone in her class is running (each class selects one representative), she figures if she can get three or four votes she'll have a plurality. She has also been working on castle building!
Wednesday, June 27, 2007
Inside the Beltway
June 27, 2007
No one, and I mean NO ONE, likes to read vacation blogs, so I'm going to spare you all but the barest details of our DC trip. I can tell you that even the willful Willie missed us and is now lying obediently at my feet, patiently waiting for a gentle stroke or kind word which, he has discovered in our absence, is all he really needs to survive in this world (well, that and a little woodwork to nibble).
Here is a list of things we did:
Ian, Erin, Chet, Adam, and Nico on our actual office visit.
A rousing game of Hide-and-Go-Seek in Statuary Hall. Adam and Erin made it back to base. Nico is still hiding.
Okay, we also went to the World Children's Festival and added to the 60 by 40 foot mural of the United States made entirely out of Legos.
We didn't actually "Reach the Day," but we did add co-sponsors and raised the probability that the bill will actually get referred out of committee for a floor vote later this year. Like everything else with cancer Nothing is Certain, But We Always Have Hope.
No one, and I mean NO ONE, likes to read vacation blogs, so I'm going to spare you all but the barest details of our DC trip. I can tell you that even the willful Willie missed us and is now lying obediently at my feet, patiently waiting for a gentle stroke or kind word which, he has discovered in our absence, is all he really needs to survive in this world (well, that and a little woodwork to nibble).
Here is a list of things we did:
- Marine Corp Evening Parade
- Museum of Natural History (two trips)
- The Smithsonian Castle
- Afternoon with the Edwards
- National Zoo
- International Spy Museum
- Eight Congressional Office Visits (2 Senators and 6 Representatives)
- Capital Tour--led by Congressman Chet Edwards (with hide-and-go-seek in Statuary Hall. . .Mr. Burke of North Dakota is "home base".)
- On the House floor with Chet during an actual vote! Wow! Democracy in Action!
- White House Tour (Erin refused to look at any photos showing the current administration.)
- Supreme Court (the building not the justices)
- Reach the Day Rally in Senate Park
- Photo Op with Senator John Cornyn on the Capital Steps to Celebrate the Newest Co-Sponsor of the Conquer Childhood Cancer Act of 2007
- And, so the list won't end on unlucky thirteen, we ate twelve meals, took six Metro subway rides and three Capital Hill subway rides, walked a marathon (estimate), and managed to sleep soundly every night.
Ian, Erin, Chet, Adam, and Nico on our actual office visit.
A rousing game of Hide-and-Go-Seek in Statuary Hall. Adam and Erin made it back to base. Nico is still hiding.
Okay, we also went to the World Children's Festival and added to the 60 by 40 foot mural of the United States made entirely out of Legos.We didn't actually "Reach the Day," but we did add co-sponsors and raised the probability that the bill will actually get referred out of committee for a floor vote later this year. Like everything else with cancer Nothing is Certain, But We Always Have Hope.
Monday, June 25, 2007
Working for a Cure
We're laptopless in DC, but I found a computer that I could use for a minute to post this link to this morning's Eagle story about our lobbying efforts: http://www.theeagle.com/stories/062507/local_20070625024.php
Dave McDermand is the newpaper's best photographer. He wanted to capture our "grim determination" with our mission, rather than our usually smiling faces. We look kind of odd, don't you think?
Dave McDermand is the newpaper's best photographer. He wanted to capture our "grim determination" with our mission, rather than our usually smiling faces. We look kind of odd, don't you think?
Friday, June 23, 2006
Priceless
June 23, 2006
I sometimes wonder what the gelcap Erin takes every day actually has inside. Certainly, it has some anti-tumor something, because her tumor is keeping its head down. But could that be all? Consider her schedule for the last week:
Last Saturday--ninth birthday party (lake swimming with 18 of her best friends), plus a sleepover
Last Monday--shopping for a kicky outfit to wear to Washington (successful)
Last Tuesday--fly to Washington DC (first flight cancelled for equipment issues; second flight delayed because of weather). Total travel time: 12 hours.
Last Wednesday--lobby on Capitol Hill--6 meetings. (missed departure flight; caught later flight--no seats available for College Station, so Walter picks us up at Intercontinental in Houston; arrive home at midnight)
Last Thursday--depart for Houston at 7:30 (a.m.) for a day with her church group at the Houston Aquarium
Yesterday--errands, including blood counts (white count has finally returned to the normal range--first time since we returned for Disney), and an evening festivities at the Tjoelkers
Today--leave for Temple at 8:00 (again, in the morning) for a birthday party at a horseback riding school plus swimming. When she returns at 4:00 she will go to a second birthday party/sleepover
Are you feeling sluggish in comparison?
Let me tell you a little more about Gold Ribbon Days and our visit with Chet Edwards. We had meetings scheduled with staffers and aides from the following offices: Kay Bailey Hutchison (her staff calls her Senator KBH), John Cornyn, Joe Barton, and Kay Granger. We actually got the see Chet himself.
He met us at the door, brought us in to his office, sat Erin down right next to him at the conference table, and proceeded to share Skittles with her while he listened attentively and took notes for the next 40 minutes. Twice his staffers slipped in and tried to move him along to his next appointment, but he brushed them off so he could continue to listen to what we had to say. He asked intelligent questions. When he had heard what I had to say, he looked me in the eye and told me we could count on his support for the Conquer Childhood Cancer Act of 2006.
A night in the Holiday Inn in the nation's capitol: $198
Meals and snacks in various airports while waiting for flights: $40
Having a Congressman listen: priceless
Monday, June 19, 2006
We Speak for Ourselves and Others
June 19, 2006
Erin's party was blessed. We got much needed rain on Friday night and Saturday morning, and plentiful sun by party time. I have said it before, but it bears repeating: Erin has great friends, and we never take for granted the time we get to spend with them. Thanks to everyone for making it such a special day.
But On To The Business At Hand. . .
Erin and I leave tomorrow for Gold Ribbon Days in Washington, D.C. We plan to make the best of our time and hope to bring a piece of our lives to the men and women who make our laws and govern our country. You all know our story, and most of you agree that we have a story worth telling. I want to introduce you to some of the young cancer patients we have met along the way.
The first is Hannah. Hannah lives in Tomball with her parents and older sister. She is one of Dr. Russell's patients and was diagnosed at age 2, right around the time Erin was diagnosed. She had a very rough time with treatment. She lost her hearing and one kidney. The other kidney struggles. She spent a lot more time in ICU than Erin, but like Erin, always left the hospital with a beautiful smile on her face. I remember that she wore the cutest outfits with matching hats that her father sewed for her. She has just learned that her permanent teeth have no root development because of the harsh chemo she received. Her family hopes that the scans she has scheduled for today and tomorrow will confirm the good news that she is still cancer free.
Ryan, AKA Batman, is another one of Dr. Russell's patients. This boy charms all the nurses at Texas Children's and attacks the world each day with vigor and a terrific sense of fun. Ryan is just drawing near the end of his treatment and is also having scans this week that will hopefully bring tears of joy and relief to his parents. Ryan has had to follow his own path because his body couldn't produce enough stem cells to risk transplant. This has meant extra rounds of chemo instead of transplant. He has also had to have around 50 transfusions just to make it through to this point. Imagine having to keep up with a high energy superhero who is continually on the low side for platelets!
We'd also like you to meet Colby. Colby is just finishing the second leg of his tandem stem cell transplant this week. His mom and dad hope they can make it back to College Station by Wednesday with their precious cargo. The pictures on his website tell the whole story of a much loved little boy who is fighting his hardest to throw off the cancer monster and return to what children do best: playing.
Our friend Razak, with his sparkling eyes and upbeat attitude, seems like he has licked the beast. He has welcomed a new little brother in to his life and is ready to put cancer behind him. We think he is a great model to follow.
There are also children with compelling stories whom we have not met, but whom we follow because we share something in common. Christi Thomas is Erin's age, with Erin's spunk. She was diagnosed right around the time Erin was, but unfortunately has never been able to enjoy even a day where her doctors declared that she was No Evidence of Disease. Despite that she leads a full (full with a capital FULL) life and meets her challenge head on. Her website is one of the spiffiest around. Since April most of the new news has been put on the link marked Blog. Brian from Oklahoma is a tad younger than Erin but has had a very similar experience and is currently on the same roadmap that Erin is following. Spencer lives in Canada and his father's blog makes you laugh even in the face a Spencer's numerous set backs. Sarah also has a parent who captures the pediatric cancer experience eloquently.
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