There are thousands of parents like us caring for a son or daughter who is more precious to us than our own lives, trying to fight for cures and more funding so that our children will be able to live past 10 years old. The truth is that pediatric cancer research gets a very small portion of government funding AND that funding is then split amongst the hundreds of various pediatric cancers. To reach the point after just 2 relapses when the doctors look at you and tell you that there "is no other curable treatment" is perhaps more devastating than hearing your child has cancer. They give you the option to go to clinical trial (if there is one available at the time) or to do nothing...
Doing "nothing" is not acceptable to us and we don't believe that this would be acceptable to you if you were in our shoes. Below are a few key points that we want you to know (feel free to look this up on your own - the numbers will surprise you!):
1. Wilms Tumor while it is commonly a pediatric cancer, it is "rare" in that it only makes up about 5% of pediatric cancer patients. When trying to get funding for new drugs to be made available to our children with Wilms, we are fighting an uphill battle because we are only talking about 25 or so children who would be using the drug.
2. Pharmacuetical companies look at the profit margin vs. the liability when releasing new drugs to new groups of patients. When it comes to children, they are very worried about the liability involved in giving kids new or experimental drugs. We understand this concern, however, when there is no other option available for our children and their Doctors feel that a particular new drug is promisingin their treatment,we feel that the possible benefit far outweighs the risk.
We feel that since there is a power in numbers (and numbers are what "rare" cancer patient's lack) we are compiling two lists of supporters to try to make this new drug available to our small group of precious children who are running out of treatment options. One list will be compiled of people with direct, vested, interest in this particular study and who will use the drug once made available (the patients and their parents) and then another group of people who want to show their support and who want to help.
The question we leave you with is this…
Even if there was just 1 child whose
life could potentially be saved through a breakthrough treatment medicine,
shouldn’t we (as parents, friends, aunts, uncles, cousins, doctors,
pharmaceutical companies, government, etc.) find
a way to make it available and give that child a chance at life?
Meet ourchildren ~
Updates
July 13, 2013
The petition reached 500 signatures this morning. I am finalizing a formal letter to the National Cancer Institute to request a meeting regarding clinical trial accessibility.
Reached 500 supporters
July 13, 2013
Reached 100 supporters
July 8, 2013
13 Comments
Kids are our future. Give them the funding that they need for pediatric cancer research!
Supporting Alex Green and his family has drawn my husband and me to donate to St. Jude's Children's Cancer Fund on a monthly basis. We also donate to Alex Green as often as possible. So much needs to be done and so many lives have been lost due to cancer...doesn't matter what name or label it carries, it's still deadly and still cancer.
FUND THE CURES!!!! Our kids deserve a fighting chance.
My heart breaks for these families. No parent should ever hear that there are no options left for their child. We have to do better.
Too many kids are losing their lives to these diseases. Please put more money into research so these rare cancers arent ignored anymore.
In late January of 2015 my 6 year old daughter was diagnosed with Stage 4 Wilms tumor. She has undergone 6 weeks of Chemo to shrink main tumor and after resection of main tumor this last week it was discovered that her tumor is of favorable histology BUT hers is considered high risk as it is Blastemal Predominant and from my readings online of research websites These kind if relapsed only once have a 10 percent chance of survival and have a high rate of relapse. I love my daughter more than my own life as she is my little angel who is very sweet and always snuggles me and I have had to go see a shrink and get medded ip to deal with my depression from this and am a devastated father and am desperate as I couldnt live without her. I get angry as well a lot and want to join some sort of protest group or start one in my area to kick down doors and demand more funding. This is total bs. The current drugs she is on are drugs they were using on kids back in the 1970s( 2 others with Doxirubicon) she is about to be switched to a higher intensity drugs after her recovery from surgery and we meet with the oncology team next week. I am ready to tell them that there drugs are garbage and there treatments in general are a joke and if they actually get her to NED with these higher intensity chemos then that is the end with our relationship with the hospital. Im not bringing her in every 6 weeks or 3 months for ct scans to put our family through more stress with scanziety if all you have to offer us is 10 percent. She would be better off not knowing she has the disease nor the rest of the family knowing and just go at home. Our main oncologist from what im hearing keeps sugar coating stuff to my wife, shes not even a Wilms specialist,.she specializes in pediatric head and neck cancers as there is no "wilms" specialist at Childrens Minneapolis as they see about 10 Wilms Cases a year. I think I know more about my childs cancer then she does from researching online constantly the last
In late January of 2015 my 6 year old daughter was diagnosed with Stage 4 Wilms tumor. She has undergone 6 weeks of Chemo to shrink main tumor and after resection of main tumor this last week it was discovered that her tumor is of favorable histology BUT hers is considered high risk as it is Blastemal Predominant and from my readings online of research websites These kind if relapsed only once have a 10 percent chance of survival and have a high rate of relapse. I love my daughter more than my own life as she is my little angel who is very sweet and always snuggles me and I have had to go see a shrink and get medded ip to deal with my depression from this and am a devastated father and am desperate as I couldnt live without her. I get angry as well a lot and want to join some sort of protest group or start one in my area to kick down doors and demand more funding. This is total bs. The current drugs she is on are drugs they were using on kids back in the 1970s( 2 others with Doxirubicon) she is about to be switched to a higher intensity drugs after her recovery from surgery and we meet with the oncology team next week. I am ready to tell them that there drugs are garbage and there treatments in general are a joke and if they actually get her to NED with these higher intensity chemos then that is the end with our relationship with the hospital. Im not bringing her in every 6 weeks or 3 months for ct scans to put our family through more stress with scanziety if all you have to offer us is 10 percent. She would be better off not knowing she has the disease nor the rest of the family knowing and just go at home. Our main oncologist from what im hearing keeps sugar coating stuff to my wife, shes not even a Wilms specialist,.she specializes in pediatric head and neck cancers as there is no "wilms" specialist at Childrens Minneapolis as they see about 10 Wilms Cases a year. I think I know more about my childs cancer then she does from researching online constantly the last
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There are thousands of parents like us caring for a son or daughter who is more precious to us than our own lives, trying to fight for cures and more funding so that our children will be able to live past 10 years old. The truth is that pediatric cancer research gets a very small portion of government funding AND that funding is then split amongst the hundreds of various pediatric cancers. To reach the point after just 2 relapses when the doctors look at you and tell you that there "is no other curable treatment" is perhaps more devastating than hearing your child has cancer. They give you the option to go to clinical trial (if there is one available at the time) or to do nothing...
Doing "nothing" is not acceptable to us and we don't believe that this would be acceptable to you if you were in our shoes. Below are a few key points that we want you to know (feel free to look this up on your own - the numbers will surprise you!):
1. Wilms Tumor while it is commonly a pediatric cancer, it is "rare" in that it only makes up about 5% of pediatric cancer patients. When trying to get funding for new drugs to be made available to our children with Wilms, we are fighting an uphill battle because we are only talking about 25 or so children who would be using the drug.
2. Pharmacuetical companies look at the profit margin vs. the liability when releasing new drugs to new groups of patients. When it comes to children, they are very worried about the liability involved in giving kids new or experimental drugs. We understand this concern, however, when there is no other option available for our children and their Doctors feel that a particular new drug is promisingin their treatment,we feel that the possible benefit far outweighs the risk.
We feel that since there is a power in numbers (and numbers are what "rare" cancer patient's lack) we are compiling two lists of supporters to try to make this new drug available to our small group of precious children who are running out of treatment options. One list will be compiled of people with direct, vested, interest in this particular study and who will use the drug once made available (the patients and their parents) and then another group of people who want to show their support and who want to help.
The question we leave you with is this…
Even if there was just 1 child whose
life could potentially be saved through a breakthrough treatment medicine,
shouldn’t we (as parents, friends, aunts, uncles, cousins, doctors,
pharmaceutical companies, government, etc.) find
a way to make it available and give that child a chance at life?
Meet ourchildren ~
Updates
July 13, 2013
The petition reached 500 signatures this morning. I am finalizing a formal letter to the National Cancer Institute to request a meeting regarding clinical trial accessibility.
Reached 500 supporters
July 13, 2013
Reached 100 supporters
July 8, 2013
13 Comments
Kids are our future. Give them the funding that they need for pediatric cancer research!
Kids are our future. Give them the funding that they need for pediatric cancer research!
Supporting Alex Green and his family has drawn my husband and me to donate to St. Jude's Children's Cancer Fund on a monthly basis. We also donate to Alex Green as often as possible. So much needs to be done and so many lives have been lost due to cancer...doesn't matter what name or label it carries, it's still deadly and still cancer.
FUND THE CURES!!!! Our kids deserve a fighting chance.
My heart breaks for these families. No parent should ever hear that there are no options left for their child. We have to do better.
Too many kids are losing their lives to these diseases. Please put more money into research so these rare cancers arent ignored anymore.
In late January of 2015 my 6 year old daughter was diagnosed with Stage 4 Wilms tumor. She has undergone 6 weeks of Chemo to shrink main tumor and after resection of main tumor this last week it was discovered that her tumor is of favorable histology BUT hers is considered high risk as it is Blastemal Predominant and from my readings online of research websites These kind if relapsed only once have a 10 percent chance of survival and have a high rate of relapse. I love my daughter more than my own life as she is my little angel who is very sweet and always snuggles me and I have had to go see a shrink and get medded ip to deal with my depression from this and am a devastated father and am desperate as I couldnt live without her. I get angry as well a lot and want to join some sort of protest group or start one in my area to kick down doors and demand more funding. This is total bs. The current drugs she is on are drugs they were using on kids back in the 1970s( 2 others with Doxirubicon) she is about to be switched to a higher intensity drugs after her recovery from surgery and we meet with the oncology team next week. I am ready to tell them that there drugs are garbage and there treatments in general are a joke and if they actually get her to NED with these higher intensity chemos then that is the end with our relationship with the hospital. Im not bringing her in every 6 weeks or 3 months for ct scans to put our family through more stress with scanziety if all you have to offer us is 10 percent. She would be better off not knowing she has the disease nor the rest of the family knowing and just go at home. Our main oncologist from what im hearing keeps sugar coating stuff to my wife, shes not even a Wilms specialist,.she specializes in pediatric head and neck cancers as there is no "wilms" specialist at Childrens Minneapolis as they see about 10 Wilms Cases a year. I think I know more about my childs cancer then she does from researching online constantly the last
In late January of 2015 my 6 year old daughter was diagnosed with Stage 4 Wilms tumor. She has undergone 6 weeks of Chemo to shrink main tumor and after resection of main tumor this last week it was discovered that her tumor is of favorable histology BUT hers is considered high risk as it is Blastemal Predominant and from my readings online of research websites These kind if relapsed only once have a 10 percent chance of survival and have a high rate of relapse. I love my daughter more than my own life as she is my little angel who is very sweet and always snuggles me and I have had to go see a shrink and get medded ip to deal with my depression from this and am a devastated father and am desperate as I couldnt live without her. I get angry as well a lot and want to join some sort of protest group or start one in my area to kick down doors and demand more funding. This is total bs. The current drugs she is on are drugs they were using on kids back in the 1970s( 2 others with Doxirubicon) she is about to be switched to a higher intensity drugs after her recovery from surgery and we meet with the oncology team next week. I am ready to tell them that there drugs are garbage and there treatments in general are a joke and if they actually get her to NED with these higher intensity chemos then that is the end with our relationship with the hospital. Im not bringing her in every 6 weeks or 3 months for ct scans to put our family through more stress with scanziety if all you have to offer us is 10 percent. She would be better off not knowing she has the disease nor the rest of the family knowing and just go at home. Our main oncologist from what im hearing keeps sugar coating stuff to my wife, shes not even a Wilms specialist,.she specializes in pediatric head and neck cancers as there is no "wilms" specialist at Childrens Minneapolis as they see about 10 Wilms Cases a year. I think I know more about my childs cancer then she does from researching online constantly the last
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Kids are our future. Give them the funding that they need for pediatric cancer research!