May is brain tumor awareness month. I hope that many have spread the word to help in getting the message out about brain tumors and our children. Brain tumor are the number 1 solid mass tumor affecting our children, the deadliest is DIPG. I would like to share several things with you that you can share with others. I hope that spreading the word about DIPG will help us get closer to finding a cure for all the children effected by this monster. Thank you all for following me and learning more about my cause.
http://www.thetimes-tribune.com/news/1.10183 Article about Aimee and I
http://www.youtube.com/watch?v=lZ_EKFLQHZY Video showing the faces and facts of DIPG. Thanks to www.icouldbeyourchild.org Thank you for all the love and care you put into your videos in remembering all the children, past and present.
http://www.cafepress.com/btwallofcourage May gear showing support for pediatric brain tumors Thanks to Pediatric Brain Tumor wall of courage. Thank you for all you do for the pediatric brain tumor community. Always caring about all the children.
Please, go to these sites to learn more about DIPG and brain tumors, learn how you can help.
God Bless you all today and always.
Annette
Saturday, May 30, 2009
Sunday, May 17, 2009
It's just not right
I am having a very hard time reading about the boy and his family that refused Chemo, so his Dr. decided to call in Children's Services and the boy was removed from his home. Then a judge stating that this child has no understanding of what he is going through since he is only 13 orders the child to receive Chemo. The chemo can kill the child before the cancer will, plus chemo for children is just watered down chemo they use on adults, so the doctor's and drug companies are all ready playing with our children's lives and making a huge profit as well. All this really bothers me a great deal. Primarily because my daughter Aimee was 12 and she was 100% aware of her illness with DIPG (diffused intrinsic potine glioma) or as most call it an inoperable brainstem glioma. She did so much research on alternative medicine, natural remedies, since conventional medicine said there was NOTHING they could do for her and she was going to die anyway why bother. Kinda like they didn't care, about her so they gave up and were willing to let her die. Should I have taken them to court for neglect as well. Since this has been forced into play, I feel it is just a matter of time before the courts and our government remove all rights of a parent when it comes to the care of their child.
This would then bring me to a new meeting of the FDA, with Doctor's who are now trying to put into play that they want to do biopsies on newly diagnosed DIPG children. Most of their presentation was based on research held in France. I can sorta see where they are coming from, in wanting to do biopsies, in order to get better tissue samples with no Chemo or Radiation in the child's body which would change the tissue sample. The thing that bothers me the most is that by doing so it will NOT help the child in question but be used for future scientific purposes. This procedure may kill the child or cause disabilities. Even though it is not 100% guarantee that the will survive the procedure how can they even want to put a child's life on the line for science. How can this be considered right. When a parent is first told your child has maybe at the most 6-12 months to live, but we would like to preform a biopsies that may KILL them NOW or cause damage that would bring their quality of what is left or their life way down. How can a parent honestly make a very informed decision when hit with a question like that. I am against this mostly because there is no way I would have taken the chance to lose even one day with my daughter who even though the doctor's only gave her a maximum of 6 months gave me 14 of the most incredible months of my life. Looking back I am so thankful and blessed to have had that time. We were also very blessed that she never received Chemo so her quality of life during this time was much better then it could have been. I guess what I am really tiring to say here is that I am sure that it will be just a matter of time before the FDA and courts demand that the parents take the chance and demand that their child have a biopsies done. To me this is so wrong. This is not right and we as parents really need to ban together to make sure this does not happen for scientific purposes. I donated my daughters brain after her death for scientific purposes which to me is when it should be done, don't ask me to take a chance and give up what little time I have with my child that is not fair to either of us especially, her. How can you look her in the eyes and say your going to die anyway so why not let us do a biopsies today which you may not even come out of, just so we may use your tissue sample to save a child 10 years from now. I am sorry and yes I may be selfish here but MY child deserves to have the best possible life she can for as long as she can. NO ONE CAN TELL ME SINCE SHE IS GOING TO DIE ANYWAY WHY NOT TAKE THE CHANCE. MY ANSWER, I WOULD HAVE MISSED OUT ON 14 OF THE MOST INCREDIBLE MONTHS OF MY LIFE. Plus, she would have never be able to start her dream to find a cure WITHOUT killing a child, to stop childhood cancer and brain tumors. I really can't understand how some parent's who have lost a child to DIPG, but never had this done on their child can support the doctor's or FDA for wanting to do this. My question to them would be if you were presented with this question at the time of your child's DX would you have done this? And having the time you had with your child, looking back would you really be welling to take this chance on their life. Or is it that since it doesn't apply to you but someone else you will support it. And suggest that newly DX children and parents should really think about it. I can only hope and pray that this issue never comes to the point where our government steps in and orders a parent to do this or your child would be removed from your custody. THE DOCTOR's & our GOVERNMENT our not GOD no matter how much they think they are. I will stop at nothing to make sure this DOESN'T EVER happen.
This would then bring me to a new meeting of the FDA, with Doctor's who are now trying to put into play that they want to do biopsies on newly diagnosed DIPG children. Most of their presentation was based on research held in France. I can sorta see where they are coming from, in wanting to do biopsies, in order to get better tissue samples with no Chemo or Radiation in the child's body which would change the tissue sample. The thing that bothers me the most is that by doing so it will NOT help the child in question but be used for future scientific purposes. This procedure may kill the child or cause disabilities. Even though it is not 100% guarantee that the will survive the procedure how can they even want to put a child's life on the line for science. How can this be considered right. When a parent is first told your child has maybe at the most 6-12 months to live, but we would like to preform a biopsies that may KILL them NOW or cause damage that would bring their quality of what is left or their life way down. How can a parent honestly make a very informed decision when hit with a question like that. I am against this mostly because there is no way I would have taken the chance to lose even one day with my daughter who even though the doctor's only gave her a maximum of 6 months gave me 14 of the most incredible months of my life. Looking back I am so thankful and blessed to have had that time. We were also very blessed that she never received Chemo so her quality of life during this time was much better then it could have been. I guess what I am really tiring to say here is that I am sure that it will be just a matter of time before the FDA and courts demand that the parents take the chance and demand that their child have a biopsies done. To me this is so wrong. This is not right and we as parents really need to ban together to make sure this does not happen for scientific purposes. I donated my daughters brain after her death for scientific purposes which to me is when it should be done, don't ask me to take a chance and give up what little time I have with my child that is not fair to either of us especially, her. How can you look her in the eyes and say your going to die anyway so why not let us do a biopsies today which you may not even come out of, just so we may use your tissue sample to save a child 10 years from now. I am sorry and yes I may be selfish here but MY child deserves to have the best possible life she can for as long as she can. NO ONE CAN TELL ME SINCE SHE IS GOING TO DIE ANYWAY WHY NOT TAKE THE CHANCE. MY ANSWER, I WOULD HAVE MISSED OUT ON 14 OF THE MOST INCREDIBLE MONTHS OF MY LIFE. Plus, she would have never be able to start her dream to find a cure WITHOUT killing a child, to stop childhood cancer and brain tumors. I really can't understand how some parent's who have lost a child to DIPG, but never had this done on their child can support the doctor's or FDA for wanting to do this. My question to them would be if you were presented with this question at the time of your child's DX would you have done this? And having the time you had with your child, looking back would you really be welling to take this chance on their life. Or is it that since it doesn't apply to you but someone else you will support it. And suggest that newly DX children and parents should really think about it. I can only hope and pray that this issue never comes to the point where our government steps in and orders a parent to do this or your child would be removed from your custody. THE DOCTOR's & our GOVERNMENT our not GOD no matter how much they think they are. I will stop at nothing to make sure this DOESN'T EVER happen.
Saturday, May 2, 2009
May is brain tumor awareness month
Did you know that May is Brain Tumor Awareness month, and Gray is the color signified for Brian Tumors. Did you know that Brain tumors are the #1 solid mass tumor cause of death among our children. Did you know that there are 120 different types of brain tumors in children.
DIPG is the deadliest, no cause and no cure. Although, some may not be as deadly they are still very severe and need attention, most can leave the child both physically and mentally disabled for the rest of their lives. How is that fair to them and the families that live this horror. Please, write to all your House, Senate, and every other politician out there and ask them all to support HR 653 and S 305 National Childhood Brian Tumor Prevention Network 2009, tell them they need to step up to the plate and start allocating money for the research and cure for all Pediatric Brian Tumors and Childhood Cancers. Write to the American Cancer Society and ask why only 3% of their revenue is split between all 12 types of Childhood Cancer. Wow, how can that be. I was told once that Children just don't get sick. Well how is 12,000+ children each year being diagnosed with some form of cancer, of that 35% or 4,200 will die. So, please tell me now that children just don't get sick. Did you know that none of the providers caring for our children shares information about new studies, treatments, and other options a family may have in the well being of that child. You need to let all the politicians know that every single medical facility and doctor out there needs to share that information with everyone. We need to make the insurance companies pay the claims on all possible treatments for the children, no matter if it's conventional, homeopathic, natural, if you have to travel from one state to another in order for the possibility to save your child. The insurance companies to chip in and help save our children. The pharmaceutical companies need to start doing research into cure for children, even though to them there is no money and again I am told children just don't get sick. So let's just keep poisoning our children, with the same Chemo drugs you give to the adults but in a watered downed form. How is that safe, to our kids when they all ready know what happens to adults when you put those toxins into them. DIPG's have been around for over 50 years when it was first tracked, and we are no closer to a cure today then we were 50 years ago. Please, consider wearing Gray or a gray ribbon all during the month of May and when people ask what it's for, tell them OUR FUTURE. We all need to ban together to make that happen. Thank you and God Bless.
DIPG is the deadliest, no cause and no cure. Although, some may not be as deadly they are still very severe and need attention, most can leave the child both physically and mentally disabled for the rest of their lives. How is that fair to them and the families that live this horror. Please, write to all your House, Senate, and every other politician out there and ask them all to support HR 653 and S 305 National Childhood Brian Tumor Prevention Network 2009, tell them they need to step up to the plate and start allocating money for the research and cure for all Pediatric Brian Tumors and Childhood Cancers. Write to the American Cancer Society and ask why only 3% of their revenue is split between all 12 types of Childhood Cancer. Wow, how can that be. I was told once that Children just don't get sick. Well how is 12,000+ children each year being diagnosed with some form of cancer, of that 35% or 4,200 will die. So, please tell me now that children just don't get sick. Did you know that none of the providers caring for our children shares information about new studies, treatments, and other options a family may have in the well being of that child. You need to let all the politicians know that every single medical facility and doctor out there needs to share that information with everyone. We need to make the insurance companies pay the claims on all possible treatments for the children, no matter if it's conventional, homeopathic, natural, if you have to travel from one state to another in order for the possibility to save your child. The insurance companies to chip in and help save our children. The pharmaceutical companies need to start doing research into cure for children, even though to them there is no money and again I am told children just don't get sick. So let's just keep poisoning our children, with the same Chemo drugs you give to the adults but in a watered downed form. How is that safe, to our kids when they all ready know what happens to adults when you put those toxins into them. DIPG's have been around for over 50 years when it was first tracked, and we are no closer to a cure today then we were 50 years ago. Please, consider wearing Gray or a gray ribbon all during the month of May and when people ask what it's for, tell them OUR FUTURE. We all need to ban together to make that happen. Thank you and God Bless.
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