Tomorrow the kids get back home. I sure do miss them. I'm kinda sorry that Cody did not start his chemo on Monday. We are going to have a good juggling act trying to find places for the kids to go if Cody goes in tomorrow.
Cody and I went to see the movie Hell Boy today. It was a pretty good movie and Cody seemed to really enjoy it. We are just going to be chilling for the rest of the day. Both of the dogs must have got into something last night. I cleaned up dog crap when I got up and again when we got home from the movie. I really don't need this extra stress....
I will let you all know if things get started tomorrow.
Thursday, July 24, 2008
Monday, July 21, 2008
This says it all.
This is a story from Australia's version of 60 minutes. If you wondered what it is like to go through what Cody and my family is going through, this is it. It made me cry because it is exactly the way it is... We have to find a cure!!!!!!!
Just to show you how on the money this is, I drove into DC this afternoon only to have Diane call me right before I crossed the Key Bridge going into Georgetown. She said go home. Cody's blood is not ready to start yet. His platelets are too low. We have to take him back in on Friday to have it retested. You can't plan anything!
Just to show you how on the money this is, I drove into DC this afternoon only to have Diane call me right before I crossed the Key Bridge going into Georgetown. She said go home. Cody's blood is not ready to start yet. His platelets are too low. We have to take him back in on Friday to have it retested. You can't plan anything!
Sunday, July 20, 2008
A fabulous Sunday..
Well it was the day that we took Daniela and Justin down to Brass Camp in Southern Md. I'll tell you, this camp could not have come at a better time. This week is going to be very stressful because Cody starts his hard chemo Tuesday morning. We dropped them off at the camp which is located in Lenardtown Md. They were busy taking their swimming tests before we left. So, we told them we love them and said goodbye.
Diane told me there was a small lighthouse very close to the camp so we decided to drive a little further south to see it. This was not the beach but for 30 minutes it was almost as good for Cody. I took some nice pictures and a couple movie clips while we were there. The movie is to the right on the blog. I hope you enjoy it and the pictures.
Note:
Cody will not be getting a stem cell rescue after this chemo. He would have to go to Duke because Georgetown is not certified to do that procedure. They feel he is on the edge of recovering on his own. Time will tell...
Piney Point Lighthouse in Md.
He could hardly wait.
The water was very warm. It was like bath water.
Stick with me kid and you can have a big beer belly too.
Diane told me there was a small lighthouse very close to the camp so we decided to drive a little further south to see it. This was not the beach but for 30 minutes it was almost as good for Cody. I took some nice pictures and a couple movie clips while we were there. The movie is to the right on the blog. I hope you enjoy it and the pictures.
Note:
Cody will not be getting a stem cell rescue after this chemo. He would have to go to Duke because Georgetown is not certified to do that procedure. They feel he is on the edge of recovering on his own. Time will tell...
Piney Point Lighthouse in Md.
He could hardly wait.
The water was very warm. It was like bath water.
Stick with me kid and you can have a big beer belly too.
Friday, July 18, 2008
My fund raising update....
After a very successful fund raising Spring I will now focus my attention totally on neuroblastoma. National Cancer Society is a great organization but they do not funnel enough money to children's cancer research. Here are the results of a meeting that the BOP had with Dr. Cheung at MSK this week. It is kinda long but there is some very exciting stuff here. The bottom line is we need to raise funds. Here is a link to my new fund raising page. Please give if you can... Thank You...
Dear Families,
Several board members traveled to New York for a few hours Monday night for our semi-annual board meeting with Dr. Cheung. Dr. Kushner and Modak were also there.
The news is all good! While we are waiting for the manufacturing and testing phase of the HU/CH3f8 project to come to the clinic and in children he had several things to explain to us that are going to be starting in the next few months!!! Here is a "simple" summary of our meeting.
Dr. Cheung was very encouraged with the progress that has been made on the humanizing project. He had a general timeline on a power point slide. He told us a year ago that it would take 1-2 million dollars to get the antibody into testing phase and he is going to be right on target. He is testing not only the Humanized version, but the Chimeric version too. There are 4 humanized constructs and two chimeric he will test. The one that yields the best results is the one that will go into production. This antibody should be in the prototype phase in the next 8 weeks. Dr. Cheung should have a manufacturer picked out and the production, testing and manufacturing stage will then begin. This is the longest phase and he anticipates the drug to be in our children by the last quarter of 2010. This seems like a long way away but in the drug development business it is really pretty remarkable.
In the meeting Dr. Cheung kept emphasizing that we should not stop at the humanized 3f8. He wants target treatments so that our children, especially relapses, will have an arsenal of weapons to attack. It is BECAUSE of the BAND OF PARENTS and their efforts that he is able to move forward on new treatments that may have been much longer in coming. We need an arsenal and we're going to work hard to build the weapons!
All of his efforts are focused on approaching the disease with multiple options because EVERY child has different responses to different treatments. In that light he proceeded to explain several other things he would like the Band of Parents to consider.
1. The regular 3f8 dosage will be escalated 4 times the current dose for standard therapy with a target date of 6 months from now. It is a matter of having enough money secured to open the trial. This will be available for relapses who don't have hama and as the standard therapy. This new dosage allows higher levels of saturation of 3f8. So, in essence one round will be a powerful punch 4 times more potent that the current therapy.
The challenges is... it is a lot of antibody and needs a lot of ONGOING funding. Here are the numbers.
Now $500.000.00 covers 80 children for 3f8
With the high dose as the standard that number drops to 20 for the same money. They are looking for long term funding of this project.
The advantage of the high dose is that hama chances are reduced and the effectiveness appears to be increased. This will be available to relapse patients as well who are not hama positive. It will also be the frontline antibody therapy.
2. 3E7 antibody
Dr. Cheung was very excited to talk about this really promising therapy. It is an antibody that was explored twenty years ago at another research facility for other cancers, specifically ovarian cancer. The funding could never be completed but the clinical data was very encouraging and was found to be a good antibody for neuroblastoma. Dr. Cheung strongly believes there is a lot of promise in using this antibody in our "arsenal". Here are his reasons.
a. It enters the neuroblastoma cells and infiltrates instead of attach to NB like 3f8
b. Because it enters the cells agents can possibly be attached to it which can kill the cells.
c. It
inhibits proliferation of tumor cells
There were several other very technical things it does.. all good but complicated to explain!
The bottom line is that this is the first antibody besides 3f8 that has a completely different way of attacking the tumor cell.
Dr. Cheung had a timeline for this project and a projected cost.
He hopes to have it funded and in the clinic in trial by end of 2010
Funding needed 1.8 million
3. NKcell strategy with 3f8
This would be a relapse option and could be in trial very soon. We don't need to fund this, except for the ongoing 3f8 money. It has been used without 3f8 with leukemia with success so we are just piggy backing on their trial.
A donor would be used to harvest the NK cells on the machine that harvests stem cells. The cells would then be
implanted into the patient. The next week the high dose 3f8 would be administered.
Their belief is that the 3f8 after the NK cells are implanted would enhance and "fix" what 3f8 alone perhaps didn't do with relapse.
The high dose 3f8 and the NKcell with 3f8 could be starting in the next few months.
The HU/CH3f8 is projected to be in the clinic by the last quarter of 2010 if all continues to on target.
The 3E7 if funded would also be projected to be in the clinic by last quarter of 2010
Please keep in mind that all of these are timeline goals and actual dates can't be assessed.
Now... the VACCINE!
Band of Parents has nothing to do with the vaccine. We did ask about it though. It is sitting on the shelf packaged and ready... The internal review Committee at Sloan is meeting next week (July 22nd), and if everyone is comfortable, the protocol will be submitted to FDA. Upon submission, the FDA has 30 days to say "no" to the trial going forward if they have any concerns. So it looks like we are looking at vaccine to start some time in the next couple of months. The vaccine will be ready for relapsed patients who are in a second remission or a case by case scenario. The vaccine trial is a 6 month trial. You get 7 injections with lots of blood work in those 6 months. It is not an iv it is an injection. They are in the process of assembling a list of those patients they believe will most benefit from the vaccine.
So the bottom line is.... the Band of Parents has a great opportunity to move forward and continue to build the arsenal of weapons that Dr. Cheung believes will give many more kids many more options with low toxicity and lots of hope! We need to start a converation among our members as to how best to raise the next 3 million dollars in the next two years. We have pledged to the hospital to finish the last phase of the HU/ch3f8 project as soon as he has a signed contract with the company that will start the production of the project That pretty much uses up the money raised to date. If we help out with high dose 3f8 AND fund a large portion of 3E7 we need some huge donors and huge help!
We need to regroup and refocus and target our money to the next things that Dr. Cheung has on the table.... High Dose 3f8 and 3E7. Please comment and give us your thoughts on how to do build our options quickly!!!!
Thanks so much, Your board of directors
Dear Families,
Several board members traveled to New York for a few hours Monday night for our semi-annual board meeting with Dr. Cheung. Dr. Kushner and Modak were also there.
The news is all good! While we are waiting for the manufacturing and testing phase of the HU/CH3f8 project to come to the clinic and in children he had several things to explain to us that are going to be starting in the next few months!!! Here is a "simple" summary of our meeting.
Dr. Cheung was very encouraged with the progress that has been made on the humanizing project. He had a general timeline on a power point slide. He told us a year ago that it would take 1-2 million dollars to get the antibody into testing phase and he is going to be right on target. He is testing not only the Humanized version, but the Chimeric version too. There are 4 humanized constructs and two chimeric he will test. The one that yields the best results is the one that will go into production. This antibody should be in the prototype phase in the next 8 weeks. Dr. Cheung should have a manufacturer picked out and the production, testing and manufacturing stage will then begin. This is the longest phase and he anticipates the drug to be in our children by the last quarter of 2010. This seems like a long way away but in the drug development business it is really pretty remarkable.
In the meeting Dr. Cheung kept emphasizing that we should not stop at the humanized 3f8. He wants target treatments so that our children, especially relapses, will have an arsenal of weapons to attack. It is BECAUSE of the BAND OF PARENTS and their efforts that he is able to move forward on new treatments that may have been much longer in coming. We need an arsenal and we're going to work hard to build the weapons!
All of his efforts are focused on approaching the disease with multiple options because EVERY child has different responses to different treatments. In that light he proceeded to explain several other things he would like the Band of Parents to consider.
1. The regular 3f8 dosage will be escalated 4 times the current dose for standard therapy with a target date of 6 months from now. It is a matter of having enough money secured to open the trial. This will be available for relapses who don't have hama and as the standard therapy. This new dosage allows higher levels of saturation of 3f8. So, in essence one round will be a powerful punch 4 times more potent that the current therapy.
The challenges is... it is a lot of antibody and needs a lot of ONGOING funding. Here are the numbers.
Now $500.000.00 covers 80 children for 3f8
With the high dose as the standard that number drops to 20 for the same money. They are looking for long term funding of this project.
The advantage of the high dose is that hama chances are reduced and the effectiveness appears to be increased. This will be available to relapse patients as well who are not hama positive. It will also be the frontline antibody therapy.
2. 3E7 antibody
Dr. Cheung was very excited to talk about this really promising therapy. It is an antibody that was explored twenty years ago at another research facility for other cancers, specifically ovarian cancer. The funding could never be completed but the clinical data was very encouraging and was found to be a good antibody for neuroblastoma. Dr. Cheung strongly believes there is a lot of promise in using this antibody in our "arsenal". Here are his reasons.
a. It enters the neuroblastoma cells and infiltrates instead of attach to NB like 3f8
b. Because it enters the cells agents can possibly be attached to it which can kill the cells.
c. It
inhibits proliferation of tumor cells
There were several other very technical things it does.. all good but complicated to explain!
The bottom line is that this is the first antibody besides 3f8 that has a completely different way of attacking the tumor cell.
Dr. Cheung had a timeline for this project and a projected cost.
He hopes to have it funded and in the clinic in trial by end of 2010
Funding needed 1.8 million
3. NKcell strategy with 3f8
This would be a relapse option and could be in trial very soon. We don't need to fund this, except for the ongoing 3f8 money. It has been used without 3f8 with leukemia with success so we are just piggy backing on their trial.
A donor would be used to harvest the NK cells on the machine that harvests stem cells. The cells would then be
implanted into the patient. The next week the high dose 3f8 would be administered.
Their belief is that the 3f8 after the NK cells are implanted would enhance and "fix" what 3f8 alone perhaps didn't do with relapse.
The high dose 3f8 and the NKcell with 3f8 could be starting in the next few months.
The HU/CH3f8 is projected to be in the clinic by the last quarter of 2010 if all continues to on target.
The 3E7 if funded would also be projected to be in the clinic by last quarter of 2010
Please keep in mind that all of these are timeline goals and actual dates can't be assessed.
Now... the VACCINE!
Band of Parents has nothing to do with the vaccine. We did ask about it though. It is sitting on the shelf packaged and ready... The internal review Committee at Sloan is meeting next week (July 22nd), and if everyone is comfortable, the protocol will be submitted to FDA. Upon submission, the FDA has 30 days to say "no" to the trial going forward if they have any concerns. So it looks like we are looking at vaccine to start some time in the next couple of months. The vaccine will be ready for relapsed patients who are in a second remission or a case by case scenario. The vaccine trial is a 6 month trial. You get 7 injections with lots of blood work in those 6 months. It is not an iv it is an injection. They are in the process of assembling a list of those patients they believe will most benefit from the vaccine.
So the bottom line is.... the Band of Parents has a great opportunity to move forward and continue to build the arsenal of weapons that Dr. Cheung believes will give many more kids many more options with low toxicity and lots of hope! We need to start a converation among our members as to how best to raise the next 3 million dollars in the next two years. We have pledged to the hospital to finish the last phase of the HU/ch3f8 project as soon as he has a signed contract with the company that will start the production of the project That pretty much uses up the money raised to date. If we help out with high dose 3f8 AND fund a large portion of 3E7 we need some huge donors and huge help!
We need to regroup and refocus and target our money to the next things that Dr. Cheung has on the table.... High Dose 3f8 and 3E7. Please comment and give us your thoughts on how to do build our options quickly!!!!
Thanks so much, Your board of directors
These are for you Mom....
That well water can be pretty cold..
Daniela's cucumber...
This is a strange bug that looks like a humming bird at first glance. It's big but very friendly...
Here you go mom..
Superman to the rescue...
Thursday, July 17, 2008
Great News...
This information is from our Band of Parents group.
The Senate of the United States works in strange and
wonderful ways. Late this
afternoon we were notified that Senator Jack Reed
planned to bring the Caroline
Pryce Walker Conquer Childhood Cancer Act to the
floor of the Senate to see if
it would pass by unanimous consent. I am so pleased
to let you know that there
were no objections.
The bill passed.
Tomorrow we will send out the official press release
but tonight I wanted to you
to know how grateful I am for the hard work you have
all done to make this
happen. This is historic and you should all be very
proud that you have had a
part in changing the world for children with cancer.
Here is the official press release.
The bill, first introduced in the Senate by Senators Jack Reed (D-RI) and Norm Coleman (R-MN), passed by unanimous consent, echoing a similar 416-0 vote June 12th in the U.S. House of Representatives. Senator Ron Wyden (D-OR) requested, and received, this unanimous consent on the Senate floor.
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 treatment and research for children with cancer and their families.
"Too many young people's lives were cut short by cancer, but their hopes were not," said Reed. "We have made great advances in treating cancer, but there is still much more to be done. The Conquer Childhood Cancer Act will deliver much needed hope and support to children and families battling cancer and more resources for vital pediatric cancer research programs."
Senator Coleman, an original sponsor, noted that the legislation passed unanimously in both Houses of Congress, and lauded the overwhelming bi-partisan support of the measure, which addresses a critical national health issue that is finally receiving the attention it deserves.
"Passage of the Conquer Childhood Cancer Act in the Senate is a monumental step in the fight against childhood cancer," said Coleman. "I am proud that my colleagues were able to come together and pass legislation that will provide the resources to not only support children and families with childhood cancer, but also find a cure."
CureSearch supports the life-saving research of the Children's Oncology Group, the world's premier cancer research collaborative. Treating 90 percent 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 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," stated Gregory Reaman, MD, Chair of the Children's Oncology Group.
"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 leaders in the Senate. Only research cures childhood cancer."
"We applaud the leadership of Senators Reed and Coleman and their colleagues in the Senate who through the passage of this bill have made finding the cure for childhood cancer an urgent national priority. Together with their colleagues in the House, Congress has given childhood cancer the attention and support that is long overdue and much needed," said Stacy Pagos Haller, Executive Director of CureSearch.
Having passed both the House of Representatives and the Senate unanimously, the bill now heads to the White House, where President Bush is expected to sign it into law.
I will also be posting some great info later today. It is a long read but I'm posting it in hopes that someone out there can help.
The Senate of the United States works in strange and
wonderful ways. Late this
afternoon we were notified that Senator Jack Reed
planned to bring the Caroline
Pryce Walker Conquer Childhood Cancer Act to the
floor of the Senate to see if
it would pass by unanimous consent. I am so pleased
to let you know that there
were no objections.
The bill passed.
Tomorrow we will send out the official press release
but tonight I wanted to you
to know how grateful I am for the hard work you have
all done to make this
happen. This is historic and you should all be very
proud that you have had a
part in changing the world for children with cancer.
Here is the official press release.
CureSearch Praises Passage of Landmark
"Conquer Childhood Cancer Act"
by Unanimous Consent in the United States Senate
Children with Cancer and Their Families to Benefit from Legislation
The bill, first introduced in the Senate by Senators Jack Reed (D-RI) and Norm Coleman (R-MN), passed by unanimous consent, echoing a similar 416-0 vote June 12th in the U.S. House of Representatives. Senator Ron Wyden (D-OR) requested, and received, this unanimous consent on the Senate floor.
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 treatment and research for children with cancer and their families.
"Too many young people's lives were cut short by cancer, but their hopes were not," said Reed. "We have made great advances in treating cancer, but there is still much more to be done. The Conquer Childhood Cancer Act will deliver much needed hope and support to children and families battling cancer and more resources for vital pediatric cancer research programs."
Senator Coleman, an original sponsor, noted that the legislation passed unanimously in both Houses of Congress, and lauded the overwhelming bi-partisan support of the measure, which addresses a critical national health issue that is finally receiving the attention it deserves.
"Passage of the Conquer Childhood Cancer Act in the Senate is a monumental step in the fight against childhood cancer," said Coleman. "I am proud that my colleagues were able to come together and pass legislation that will provide the resources to not only support children and families with childhood cancer, but also find a cure."
CureSearch supports the life-saving research of the Children's Oncology Group, the world's premier cancer research collaborative. Treating 90 percent 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 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," stated Gregory Reaman, MD, Chair of the Children's Oncology Group.
"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 leaders in the Senate. Only research cures childhood cancer."
"We applaud the leadership of Senators Reed and Coleman and their colleagues in the Senate who through the passage of this bill have made finding the cure for childhood cancer an urgent national priority. Together with their colleagues in the House, Congress has given childhood cancer the attention and support that is long overdue and much needed," said Stacy Pagos Haller, Executive Director of CureSearch.
Having passed both the House of Representatives and the Senate unanimously, the bill now heads to the White House, where President Bush is expected to sign it into law.
I will also be posting some great info later today. It is a long read but I'm posting it in hopes that someone out there can help.
New Pop Pop
My daughter Corie had her baby early this morning. Devin Njume Mboh was born at Bethesda Naval Hospital at 02:42 July 17th. He is 9lbs, 6ozs and 21.5 inches long. Mother and baby are doing fine...
Man I feel old....
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