July 29, 2008
I didn't update Erin's page when the U.S. Senate passed the Conquer Childhood Cancer Act by unanimous consent about a week and a half ago (in the middle of our Pittsburgh vacation), and I should have. This was a monumental event, made possible by thousands of people involving themselves in the political process (some for the first time ever!). Anyway, I received word this morning that President Bush will sign the bill into law this morning at 9:55 Bryan time. Please pause and give yourself a pat on the back for all the emails, cards, letters, and prayers you sent that pushed this through. This is a tribute to the process, and I'm proud to be an American where the government can be responsive to the citizenry.
When I went into the bedroom to see Erin's reaction to this news, she didn't get up to dance a jig. When I asked why she was just sitting there and what she was concentrating so intently on, she told me she was setting her watch for 9:55, so she would know exactly when the bill became law! She wasn't going to celebrate until then.
Showing posts with label Conquer Childhood Cancer Act. Show all posts
Showing posts with label Conquer Childhood Cancer Act. Show all posts
Tuesday, July 29, 2008
Thursday, June 12, 2008
Conquer Childhood Cancer Act Passed!!!!
June 12, 2008
The U.S. House of Representatives UNANIMOUSLY passed the Conquer Childhood Cancer Act (now called the Caroline Pryce Walker Conquer Childhood Cancer Act) today with 416 positive votes (as if anyone in Congress would have the huevos to vote against cancer kids). Thank you for the over 20,000 letters, faxes, and e-mails you have sent that helped sway your representatives. Hopefully, the Senate will follow suit soon, and of course, that the President will sign the bill into law. When those two things happen, we will have a new mission. We must once again return to full action to get appropriations to support the bill.
Erin and I are already back in town. Days three and four went as scripted and we're set to go sledding tonight (for those of you trying to figure out Texas geography, A&M has a ski mountain with artificial turf where they teaching skiing as a PE class and let locals schedule sledding parties. Once you get over the idea of sledding on damp, green plastic grass, you can have a great time). Erin will do physical therapy in the pool while I teach tomorrow, then we will depart for the final day of chemo with our friends Tonie and Janice Sahm (her real name not just a pseudonym for stay-at-home-mom). The IV version of irinotecan has required more zofran for stomach upset, but less imodium (actually no imodium) for diahrrea.
The U.S. House of Representatives UNANIMOUSLY passed the Conquer Childhood Cancer Act (now called the Caroline Pryce Walker Conquer Childhood Cancer Act) today with 416 positive votes (as if anyone in Congress would have the huevos to vote against cancer kids). Thank you for the over 20,000 letters, faxes, and e-mails you have sent that helped sway your representatives. Hopefully, the Senate will follow suit soon, and of course, that the President will sign the bill into law. When those two things happen, we will have a new mission. We must once again return to full action to get appropriations to support the bill.
Erin and I are already back in town. Days three and four went as scripted and we're set to go sledding tonight (for those of you trying to figure out Texas geography, A&M has a ski mountain with artificial turf where they teaching skiing as a PE class and let locals schedule sledding parties. Once you get over the idea of sledding on damp, green plastic grass, you can have a great time). Erin will do physical therapy in the pool while I teach tomorrow, then we will depart for the final day of chemo with our friends Tonie and Janice Sahm (her real name not just a pseudonym for stay-at-home-mom). The IV version of irinotecan has required more zofran for stomach upset, but less imodium (actually no imodium) for diahrrea.
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.
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!
Monday, July 10, 2006
No Rebounds
July 10, 2006
Things seem a lot quieter around here today. Both sisters and both nieces returned to Garland yesterday. We've shoved the extra mattresses back under the beds, taken Raffi out of the CD player, and returned the borrowed baby equipment (and managed to do it without renting a U-Haul). Erin had great fun with both Emma and Annabelle despite the large age gap among the cousins. We kept it pretty low key for the Fourth of July, but did manage to get some swimming and movie watching in later in the week.
I really had few expectations about Erin's blood counts last Friday. I thought we might see high numbers inflated by antibiotics or steady numbers since we were early in this cycle of chemo. I never expected borderline neutropenic (ANC=500) and self-imposed house arrest for the weekend. I made the tech run the sample a second time (ANC=400). Oops. I talked (bribed) Erin into a venopuncture (ANC=300). Double oops. I tried to convince myself that I just caught her in the trough following an illness and that Monday would bring better number. I even entertained the thought that the machine had validity and reliability issues.
Erin did not take the news well. Believe it or not, Erin was invited to a birthday party on Saturday (not unlike every other Saturday for a long time). Walter and I played the heavy and made her stay home. We rented Wallace and Grommit and some other less palatable kids films. We tried to remember the rules of neutropenia (the only one that readily came to mind was the one about repeat handwashing, so based on the notion of cleanliness being next to Godliness, we proceeded to act like obsessive-compulsive handwashers for the next three days).
We returned for more blood work this morning, convinced we were going to see the biggest rebound since Dennis Rodman retired from the Detroit Pistons. "Uh oh." I looked the print out and then at the technician. "Did you hand me the results from last Friday? These look very familiar. . .Oh, these are today's?" Seeing numbers in the same ranges as last Friday left us with a tough decision. Do we continue the self-imposed house arrest or let Erin attend Creative Arts Camp? What would you do? We armed her with her own personal bottle of hand soap and sent her off to camp. We'll check her blood again on Thursday. In the meanwhile chemo is still on hold.
What does this all mean? First, it makes us a little nervous to delay treatment for a week, but we did it last fall when Hurrican Rita closed down the clinic with no ill effect. Since we have scans scheduled in a little over two weeks, I don't think the decision will have much effect and will hopefully give her counts a chance to recover on their own.
Why did her counts fall? I have three thoughts about that.
1. Erin has been sicker then usual this summer (first the lung gunk (post Disney) then the ear infection (post DC trip). Her immune system may just need time to recover.
2. We have been poisoning her with chemo for 14 months ,and her immune system has taken a hit and will continue to drop lower and take longer to recover, regardless of the number of germs she encounters.
3. Something (tumorwise) is going on causing her counts to drop.
1. Erin has been sicker then usual this summer (first the lung gunk (post Disney) then the ear infection (post DC trip). Her immune system may just need time to recover.
2. We have been poisoning her with chemo for 14 months ,and her immune system has taken a hit and will continue to drop lower and take longer to recover, regardless of the number of germs she encounters.
3. Something (tumorwise) is going on causing her counts to drop.
At this point I am pulling strongly for #1, discounting #3 because her other counts like hemoglobin and platelets are normal and don't seem to be crowded out by tumor cells in the marrow, etc., and hoping we don't have to face either #2 or #3 ever or at least for a very long time.
I checked on thomas.loc.gov this weekend and was pleased to learn that Chet Edwards, true to his word to Erin, joined the list of Congressional co-sponsors for the Conquer Childhood Cancer Act of 2006. If your representative is not on this list, you should write or call them and ask why not.
I'll close for now, but will not leave you hanging for a week or ten days before I update the status of Erin's immune system.
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