IT PASSED!! The Caroline Pryce Walker Conquer Childhood Cancer Act Passes 416-0 in U.S. House of Representatives! Now the bill only has to pass the Senate.
Here is the information from Kate Shafer, at CureSearch:
Dear Advocates,
Below you will find the Curesearch press release announcing passage of the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008. This success has been the result of many things but the more than 20,000 letters sent by advocates to members of Congress about childhood cancer and this bill have been a key factor. This brings us all one step closer to enacting a law that will make a critical difference to children with cancer.
Thank you for your letters. Please take a moment to thank your Representatives and continue to contact your Senators to urge passage in the Senate.
FOR IMMEDIATE RELEASE
CureSearch Praises Passage of the "Caroline Pryce Walker Conquer Childhood Cancer Act" in U.S. House of Representatives
Children with Cancer and their Families to Benefit from Landmark Legislation
June 12, 2008 (Bethesda, MD) - CureSearch National Childhood Cancer Foundation salutes the United States House of Representatives for passage of H.R. 1553, the "Caroline Pryce Walker Conquer Childhood Cancer Act," which promises to significantly increase federal investment into childhood cancer research.
During markup of the legislation, the bill was renamed the Caroline Pryce Walker Conquer Childhood Cancer Act of 2008, in memory of Caroline Pryce Walker, daughter of Congresswoman Deborah Pryce (R-OH), who succumbed to neuroblastoma in 1999 at age nine.
The bill authorizes $30 million annually over five years, providing funding for collaborative pediatric cancer clinical trials research, to create a population-based national childhood cancer database, and to further improve public awareness and communication regarding available treatments and research for children with cancer and their families.
"For far too long, children suffering from pediatric cancer have gotten short shrift on federal resources," said Pryce, original author of this groundbreaking legislation.
"The bill we passed today dramatically expands federal investment into childhood cancer research and education, and will make an historic difference in the lives of the more than 12,000 children who will be diagnosed with cancer each year. A nation with our resources, our scientists, our committed doctors and oncologists, and our inherent and insuppressible fighting spirit can and should do more to put an end to so much suffering."
Congressman Chris Van Hollen (D-MD), one of the original co-sponsors of the Carolyn Walker Pryce Conquer Childhood Cancer Act, stated that conquering childhood cancer has transcended partisan politics, and addresses a critical national issue that is finally receiving the attention it deserves.
"I am pleased that the House passed this important legislation, which will bring us one step closer to eradicating pediatric cancer," said Van Hollen. "This bill will enhance and expand pediatric cancer research activities at the National Institutes of Health, establish a pediatric cancer registry, and increase informational and educational outreach efforts to patients and families affected by pediatric cancer. No child should have to experience and suffer the effects of cancer, and no parent should have to see their child suffer."
CureSearch supports the life-saving research of the Children's Oncology Group, the world's premier cancer research collaborative. Treating 90% of children with cancer, the Children's Oncology Group includes more than 5,000 experts in childhood cancer research and treatment, located at more than 200 leading children's and university hospitals across North America.
"The Caroline Pryce Walker Conquer Childhood Cancer Act allows for translation of the very best research discoveries into clinical evaluation and practice, in order to improve the cure rates for all children with cancer," noted Gregory Reaman, MD, Chair of the Children's Oncology Group. "Only research cures childhood cancer. On behalf of my colleagues in the Children's Oncology Group and the children with cancer and their families who are our partners in clinical research, we thank our Congressional leaders."
"On behalf of CureSearch, we applaud the steadfast leadership of Representatives Chris Van Hollen and Deborah Pryce and their colleagues in the House who through the passage of this bill have made finding the cure for childhood cancer an urgent national priority," said Stacy Pagos Haller, Executive Director, CureSearch.
Companion legislation in the United States Senate (S.911), sponsored by Senator Jack Reed (D-RI), cleared the Senate Health, Education, Labor and Pensions (HELP) Committee unanimously in November, 2007. The Senate version of the Conquer Childhood Cancer Act currently has 63 co-sponsors; a full Senate floor vote on the bill is expected this summer.
About CureSearch
CureSearch seeks to conquer childhood cancer, conquer it sooner, conquer it fully and for all time. Through public education, advocacy and fundraising, the National Childhood Cancer Foundation, a non-profit 501 (c) (3), supports the work of the Children's Oncology Group (COG), the world's premier pediatric cancer research collaborative. This network of more than 5,000 healthcare professionals dedicates their lives to finding answers and sharing results. More than 12,000 children are diagnosed with cancer each year, and more than 40,000 children and adolescents are currently in treatment. Only research cures cancer. For more information, visit www.CureSearch.org.
Thank you to everyone who took time to write, phone, and email your senators and congressmen and women. Together we all made a difference that will help further research to find a cure for pediatric cancer. Now that's worth fighting for!!!
♥♥♥♥♥♥ Kim ♥♥♥♥♥♥
Wednesday, June 11, 2008
Can you tell I'm getting slower with my postings? I think I'm just getting slower in general :)
An update on the Hats on for Hannah Cutchogue East fundraiser. Total is up to $3195.11 WOW!!! I'm sure the 11 cents came from those kids emptying their pockets, giving all they had with them to help.
Hannah made a thank you poster for the school that she will take in tomorrow to hang in the hallway. She also wrote a thank you letter to the student council for organizing and holding the event that we will give to them tomorrow also. We'll have pictures of all of that soon.
Hannah's clinic visit from Monday went well. Her counts are trending up, very slowly. They tell me this is typical, the counts will continue to trend slowly back into normal ranges on all accounts. She had lost about a pound, but still in the normal range for her weight.
All of the blood work came back, and I have been trying to decipher it since then. This is a bit more than I am used to, I asked for 5 tests, the neurologist asked for a few and they did some initial blood work for the endocrinologist also. Everything appears to be in normal ranges, the one thing that is a bit low is her parathyroid. This affects her growth and could also contribute to her osteopenia. I am researching on my own, and will know more after our appointment with the endo on June 19th.
I also want to share two videos with you. The first is from Mimi, Julian's mom. I'm sure you all remember Julian, who passed away from medullblastoma. His mom has put together this video to honor cancer kids and also raise awareness about children's cancer. Julian's dad Ken will be taking this video to DC to raise awareness at an event there. You may want to view this yourself before allowing your kids to view it, it's quite sad, and meant to shock some people into action. The video includes photos of kids pre-diagnosis, during treatment, and after treatment. This video includes all of the angels. She has another video also for survivors, which Hannah is included in, since she couldn't fit all the photos she was sent in just one video.
The second video to share is from a care pages friend from California, also with cancer. His name is Bailey and he is a riot! His family is taking a trip across the country this summer, stopping in Atlanta and hoping to meet with Paula Deen. This 7 year old is in love with Paula Deen-the chef-isn't that funny? As Peggy (Coleman's mom) says "he should be on tv." If anyone knows Paula, or could help out by bombarding her with emails, please take a minute and help. You can check out Bailey's care page HERE
Here is his video to enjoy also, take a couple minutes and watch this, it's great. His website also explains how we can help by contacting Paula Deen. She is having a contest to nominate a deserving fan to come and meet her on her show. Wouldn't that be great for him? Maybe when they hear he has recurrent cancer with less than 10% survival rate, they will nominate him!
And just a tip from my 11 year old techno daughter-if the video keeps starting and stopping, press the pause button to allow the video to load for a minute, then press play again. This way it won't start and stop.
xoxo Kim
An update on the Hats on for Hannah Cutchogue East fundraiser. Total is up to $3195.11 WOW!!! I'm sure the 11 cents came from those kids emptying their pockets, giving all they had with them to help.
Hannah made a thank you poster for the school that she will take in tomorrow to hang in the hallway. She also wrote a thank you letter to the student council for organizing and holding the event that we will give to them tomorrow also. We'll have pictures of all of that soon.
Hannah's clinic visit from Monday went well. Her counts are trending up, very slowly. They tell me this is typical, the counts will continue to trend slowly back into normal ranges on all accounts. She had lost about a pound, but still in the normal range for her weight.
All of the blood work came back, and I have been trying to decipher it since then. This is a bit more than I am used to, I asked for 5 tests, the neurologist asked for a few and they did some initial blood work for the endocrinologist also. Everything appears to be in normal ranges, the one thing that is a bit low is her parathyroid. This affects her growth and could also contribute to her osteopenia. I am researching on my own, and will know more after our appointment with the endo on June 19th.
I also want to share two videos with you. The first is from Mimi, Julian's mom. I'm sure you all remember Julian, who passed away from medullblastoma. His mom has put together this video to honor cancer kids and also raise awareness about children's cancer. Julian's dad Ken will be taking this video to DC to raise awareness at an event there. You may want to view this yourself before allowing your kids to view it, it's quite sad, and meant to shock some people into action. The video includes photos of kids pre-diagnosis, during treatment, and after treatment. This video includes all of the angels. She has another video also for survivors, which Hannah is included in, since she couldn't fit all the photos she was sent in just one video.
The second video to share is from a care pages friend from California, also with cancer. His name is Bailey and he is a riot! His family is taking a trip across the country this summer, stopping in Atlanta and hoping to meet with Paula Deen. This 7 year old is in love with Paula Deen-the chef-isn't that funny? As Peggy (Coleman's mom) says "he should be on tv." If anyone knows Paula, or could help out by bombarding her with emails, please take a minute and help. You can check out Bailey's care page HERE
Here is his video to enjoy also, take a couple minutes and watch this, it's great. His website also explains how we can help by contacting Paula Deen. She is having a contest to nominate a deserving fan to come and meet her on her show. Wouldn't that be great for him? Maybe when they hear he has recurrent cancer with less than 10% survival rate, they will nominate him!
And just a tip from my 11 year old techno daughter-if the video keeps starting and stopping, press the pause button to allow the video to load for a minute, then press play again. This way it won't start and stop.
xoxo Kim
Sunday, June 8, 2008
Here are a few more pictures from the birthday and Hats on for Hannah day. Even the lunch ladies had hats on!!
Tomorrow Hannah goes to clinic for a regular blood count and check up. Hopefully we will also get the results of the blood tests from last week. I'm especially interested in her copper levels, Vitamin D levels, and the blood work for the endocronologist. I am also going to check with them regarding something called a dexascan-which will check Hannah's bone density level.
We were melting here today it was so hot. Colby had a lacrosse game at 9am but it was so hot even at that time. Then we came home to spend some time in the pool, it was wonderful.
Hannah declared that it was "the best wish!" Then, Colby had a softball game this afternoon, just before the big thunderstorms hit. That was fun. Hannah thought we should all just sleep together (Dave and I got a kick out of that one.) Here is dad enjoying the pool!
♥♥♥♥♥♥ Kim ♥♥♥♥♥♥
Tomorrow Hannah goes to clinic for a regular blood count and check up. Hopefully we will also get the results of the blood tests from last week. I'm especially interested in her copper levels, Vitamin D levels, and the blood work for the endocronologist. I am also going to check with them regarding something called a dexascan-which will check Hannah's bone density level.
We were melting here today it was so hot. Colby had a lacrosse game at 9am but it was so hot even at that time. Then we came home to spend some time in the pool, it was wonderful.
Hannah declared that it was "the best wish!" Then, Colby had a softball game this afternoon, just before the big thunderstorms hit. That was fun. Hannah thought we should all just sleep together (Dave and I got a kick out of that one.) Here is dad enjoying the pool!♥♥♥♥♥♥ Kim ♥♥♥♥♥♥
Saturday, June 7, 2008
Hannah's birthday was Friday, June 6th...which is why I have been too busy to update her blog. What a day she had! How many kids have the ENTIRE school wearing party hats (Hannah designed her own hat for the day, and even the lunch ladies had hats on), telling her Happy Birthday, announcing her name over the speakers during the day, posting birthday wishes throughout the hallways and get a $2460 present????
Hannah said to me after seeing how much was raised that we have to do something "really special" for the kids with cancer. We'll be talking to Childlife at the hospital and other kids with cancer to get their input, and we would love yours too! Please write in and let us know your ideas here on the blog.
More pictures tomorrow, having trouble loading them tonight.
xoxo Kim
Tuesday, June 3, 2008
It's 10pm and I just now got an email from Alyssa, Dr. Atlas' wonderful PA to say that Hannah's
Thank God. When am I going to start feeling the relief? It did feel good to get the good report, now I have to let it sink in a bit and realize that it is the truth. Thank goodness for wonderful people like Alyssa who took the time at 10pm at night, after a family emergency took her away from the hospital this afternoon, to access the hospital's computer system from her home and then email me. Many a doctor could learn from that kind of care.
So, on to the other news for Hannah. On Friday we met with the orthopedist at Schneider's. He evaluated Hannah and then looked at her xrays. At first he said that maybe the films were just of poor quality so we moved to the computer to view them digitally. But, they were no different. The variations that I noticed on the xrays were telltale signs of osteopenia. What? Osteo meaning bone and penia meaning poor (bone mineral density). Basically she has low bone density. We don't know exaclty how low yet because she has yet to have a bone density test, but we know that the bone density is low enough to see through the bones on the xrays. The doctor showed me an xray from a child with a normal bone density. Wow, what a difference. It was more homogeneous, more of a milky appearance and not transparent like Hannah's. Hannah's scans were see through with patchiness and a honeycomb pattern in some places (indicative of osteopenea/osteoporosis.)
What is causing this? It is probably a combination of things. The steroids she was on including the decadron before and immediately after surgery, the horrible megace that she was on for months to increase her appetite, the neurontin she was on to try and stop the leg pains after surgery, her poor diet for several months and the amount of time she was unable to walk, thus not using her muscles and bones. All of those things can lead to a decrease in bone density, especially the steroids.
The treatment? The orthopedist recommended walking, and walking quickly, any type of impact activity. Using the bones in the feet by continuing to walk on them and place pressure on them will eventually help to thicken them. Although it may be painful at times, it is essential to building the bone density. We had been doing the opposite-trying to find low impact activities because she was experiencing so much pain. Hannah was swimming, and being carried around by us quite a bit. We learned that that is not the correct thing right now for her.
We also have to meet with the peds endocrinologist regarding treatment. They may recommend some type of calcium supplement, but there are some risks to children with some of them. We visit with them on June 19th.
Other than that she has been feeling ok. Still stomach pain and nausea in the morning, not sure if that will ever go away. Her energy level is still a bit low, she would sleep every day until 10 or 11 if she could. But as long as it's still NED, we'll take anything else that comes our way.
I'll leave you with Hannah's own ponytail from Relay...
xoxo Kim
MRI's today were clear, NED...No Evidence of Disease
Thank God. When am I going to start feeling the relief? It did feel good to get the good report, now I have to let it sink in a bit and realize that it is the truth. Thank goodness for wonderful people like Alyssa who took the time at 10pm at night, after a family emergency took her away from the hospital this afternoon, to access the hospital's computer system from her home and then email me. Many a doctor could learn from that kind of care.
So, on to the other news for Hannah. On Friday we met with the orthopedist at Schneider's. He evaluated Hannah and then looked at her xrays. At first he said that maybe the films were just of poor quality so we moved to the computer to view them digitally. But, they were no different. The variations that I noticed on the xrays were telltale signs of osteopenia. What? Osteo meaning bone and penia meaning poor (bone mineral density). Basically she has low bone density. We don't know exaclty how low yet because she has yet to have a bone density test, but we know that the bone density is low enough to see through the bones on the xrays. The doctor showed me an xray from a child with a normal bone density. Wow, what a difference. It was more homogeneous, more of a milky appearance and not transparent like Hannah's. Hannah's scans were see through with patchiness and a honeycomb pattern in some places (indicative of osteopenea/osteoporosis.)
What is causing this? It is probably a combination of things. The steroids she was on including the decadron before and immediately after surgery, the horrible megace that she was on for months to increase her appetite, the neurontin she was on to try and stop the leg pains after surgery, her poor diet for several months and the amount of time she was unable to walk, thus not using her muscles and bones. All of those things can lead to a decrease in bone density, especially the steroids.
The treatment? The orthopedist recommended walking, and walking quickly, any type of impact activity. Using the bones in the feet by continuing to walk on them and place pressure on them will eventually help to thicken them. Although it may be painful at times, it is essential to building the bone density. We had been doing the opposite-trying to find low impact activities because she was experiencing so much pain. Hannah was swimming, and being carried around by us quite a bit. We learned that that is not the correct thing right now for her.
We also have to meet with the peds endocrinologist regarding treatment. They may recommend some type of calcium supplement, but there are some risks to children with some of them. We visit with them on June 19th.
Other than that she has been feeling ok. Still stomach pain and nausea in the morning, not sure if that will ever go away. Her energy level is still a bit low, she would sleep every day until 10 or 11 if she could. But as long as it's still NED, we'll take anything else that comes our way.
I'll leave you with Hannah's own ponytail from Relay...
xoxo Kim
Monday, June 2, 2008
RELAY FOR LIFE FINAL...131 LUMINARIAS!!!!
Our final total was 131 bags. Thanks again everyone, you helped us raise money for finding a cure to this horrible disease.
Our relay-well, the forecast was for rain. I understand it has rained every year since they started relaying here in Southold.This year was no different. It rained in the morning, but stopped in the afternoon in time for everyone to set up and get ready. We arrived around 3pm to set up. It was SO windy, everything was whipping around the field. We had a difficult time securing our canopies and tarps. But everything was placed around and our area was decorated nicely. Our team name was Maui Mamas, so I'm sure you can guess what the theme was.
Dave and Hannah and I headed over to the Survivor dinner at 5:30. It was so nice, they had gift bags for all the survivors and a nice catered dinner. Hannah looked around and said "why am I the only kid here?" I told her we knew lots of kids with cancer, just none of them lived in our town. Everyone was so nice to her, it was quite a sight seeing her in that little purple Survivor t-shirt. We then headed back to the field for the first lap of the relay. The first lap is for Survivors only. The crowd lines the field and claps and cheers as the survivors walk the lap. I walked with Hannah (who was waving and smiling and talking to her sister on the walkie talkie) and our friend Pam's mom, also a cancer survivor. I think Hannah really got a kick out of everyone cheering her on and yelling her name. Next came the survivors and caregiver walk, so Dave and I both walked with her. Next was the entire crowd.
We got all three laps in before the weather started coming in. It began to rain, it poured. We all took cover, it didn't last that long. After the downpour (with thunder and lightening), it stopped. It was warm out, so it wasn't miserable at all. Next thing we knew, it was 7:45pm and the police were coming around telling everyone that the relay had been cancelled and we had to pack up and get out asap. I guess the American Cancer Society heads in Connecticut heard that we were going to get severe lightening and hail. Anyone that lives here on Long Island knows that it is a weird place for weather. We are located between the Long Island Sound and the Peconic Bay, and often weather that hits elsewhere does not hit us. Our relay chairs tried to convince the ACS people to give us a half hour to wait and see, but they were having none of it. We were so disappointed. We had anticipated a long fun night of walking and remembering and talking, but by 9pm, we were packed and off the field.
We were able to get in the most important part of the relay-the survivor lap, so I'm happy that Hannah was able to experience that. We know now that there are other kids in Southold with cancer, some living and some that have passed away. Wow.
I also wanted to share the Wall of Courage with you. My online friend Heidi, mom of Jessica who passed away last year on June 9th from a brain tumor, created this wonderful Wall of Courage with many kids pictures with brain tumors, and lots of brain tumor facts too.
It was an amazing display, and I was so honored that she allowed me to use it. The girls and I put it together, and here is a picture of it at home along with all of our luminaria bags. Thanks so much Heidi. Everyone at the relay was very moved by the display. Many people stopped to look at it, and ponder all of the kids with brain tumors, many of whom had passed away. When it got dark, people came over with their flashlights to see it. Well it was out in the rain, and although the pictures were laminated, the board became warped a bit. 
Here is the board again after a bit of rain, but doesn't it look great? On Sunday night, we all came back to the field for the luminaria and closing ceremony. We showed up early-with our Wall of Courage to display again and to help set up. We filled all the luminaria bags with the candles and helped set them around the track. There were more than 4,000 bags displayed. That is both honorable and tragic at the same time I think. But the ceremony was very special and moving for all of us there.
Tina Koslosky, who ran a scrapbook fundraiser for Hannah last year, spoke about losing her son at age 3 to leukemia. I had not even known that she had a son that died from cancer. Everyone in the crowd was crying. When it got dark we lit all the candles, and then began with a bagpipes version of Amazing Grace. Everyone followed the bagpiper around the track in silence looking at all the luminarias in honor of those fighting cancer, or who have lost their battle with cancer, or who are supporting someone with cancer. It was very quiet and humbling. We were also joyful at looking at all of the bags in honor of Hannah, and all of the other bags we made that you all had ordered from us. Very exciting too! Here are some of my favorite pictures.So, our first relay was a very positive experience for Hannah. She enjoyed being one of the honored survivors, and also got to do some fun things like play putt putt golf, eat cotton candy, and meet lots of other survivors and supporters. And check out the big trophy in the picture here from Mrs. Smith-she really got a kick out of that one, thank you!
Back to reality. We're at the hospital tomorrow for her brain and spine MRI's-about 3 1/2 hours in all. Fingers crossed and lots of prayers tonight.
xoxo Kim
Sunday, June 1, 2008
Hello everyone, just a quick update tonight before we all head off to bed. Our relay was wonderful, even though it was cancelled! Yes, cancelled last night at 7:45pm, less than two hours after it started. Weather, oh the weather. I'll have more on that later.
We were able to get in the first few laps, it was a very moving walk, with the crowd lining the inside of the field cheering on the survivors. Hannah was smiling and waving the whole time.
Due to the cancellation we went back tonight to do the luminaria walk. Wow, lots to say on that one too. It was incredible. Thanks to all of you, Hannah had so many bags honoring her. The girls really enjoyed looking at all of the bags they created from all of you too, that was nice.
Lots more on everything tomorrow........when my eyes are open.
So, the whole family is going to bed at 11pm on a school night. This should be fun in the morning!
xoxo Kim
We were able to get in the first few laps, it was a very moving walk, with the crowd lining the inside of the field cheering on the survivors. Hannah was smiling and waving the whole time.
Due to the cancellation we went back tonight to do the luminaria walk. Wow, lots to say on that one too. It was incredible. Thanks to all of you, Hannah had so many bags honoring her. The girls really enjoyed looking at all of the bags they created from all of you too, that was nice.
Lots more on everything tomorrow........when my eyes are open.
So, the whole family is going to bed at 11pm on a school night. This should be fun in the morning!
xoxo Kim
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