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
Showing posts with label brainstem tumors. Show all posts
Showing posts with label brainstem tumors. Show all posts
Saturday, May 30, 2009
Tuesday, March 17, 2009
Will never understand
Today as I sit here with a heavy heart remembering the loss two years ago, of one very special little boy who lost his battle to this dreaded disease called DIPG. I hear of another who had past last night. And several more just learning and hearing your child has a brain tumor called DIPG and there is NOTHING we can do. My heart will never stop aching for all these children and there families. Unless, you have walked this path you will never really feel our pain. I wish that someone would tell me what it's going to take to save these children from DIPG and childhood cancers?
I do know that we really need to talk about this to anyone and everyone we meet, the problem is no one wants to hear that a child was effected by a brain tumor, let alone any other type of cancer. The general public doesn't want to believe this is even out there. It scares them, so they won't listen.
I am now devoting my life to fulfill Aimee's dream, to find the cure. Whether I have to do it by lobbing Congress, the FDA, providers or the whole health care industry, I will. I will knock on every door I come to. When they slam it in my face I will give it a few day's and go back again until they decide to open the door and listen to me. I will hold as many fund-raising/awareness events as I possibly can. I will sit in the lobby of the newspaper, TV, and radio stations until someone will listen. I will not take NO for an answer.
I have been blessed enough to met some very incredible people through Aimee's journey, and I know that together we will find the answers. I ask everyone out there write to your state's government officials and yes even the president and demand that they take action in finding a cure and saving our children. Our children and theirs are our future give them the chance to experience it.
Here are some thoughts for a letter:
1...Ask that all providers from coast to coast must share any and all new treatments, alternatives, natural cures. Some may not know that if you live in a state and your only Children's hospital is not one of the FDA approved to participate in clinical studies (which usually are only the bigger ones) your child will never be offered that treatment, and in most cases your child's doctor may not even be aware that it's out there. To me this is a very large problem within our health care system and needs to be fixed ASAP.
2...We need some new kind of tissue data base network set-up. I know that when you have a child with a DIPG tissue samples are not an option, unless the child passes away. In most cases parents are not asked to donate their child's brain tissue, and since we are grieving it isn't even a though that enters our minds. I am an organ donor, so my daughter also wanted to be an organ donor, but unfortunately she could not because of her DX of DIPG. She did however, tell the doctor's that if they didn't take her brain to find the cause of her tumor, they will never find the cure. My problem here is yes we donated her brain but according to the hospital, and doctor's she was seeing in the end, the brain tissue is for their use and their use only. This is wrong, I feel that since it is impossible to collect enough tissue samples from coast to coast what is collected should be shared by all. I also know that some facilities have more research resources available to them then others. If we do not work together we will not find the cure.
3...Demand that the insurance industry must pay for any and all treatments for a child with a terminal illness, When you are told that there is NOTHING else out there for your child then you stumble across a Dr. or clinic that offers treatment not yet approved by the FDA, the insurance company refuses to pay for it. Also, EX: I live in PA, if I go to NY for treatment I am out of my provider network therefore, most claims WILL not be paid because I didn't go to a participating provider. To me this is very very wrong, what gives them the right to deny my child any treatment that may save her life. How can they sleep at night when they put a price tag on my child's life? Now remember these denials are coming from the same companies that our govt bails out and then the top CEO's receive million's in bonuses for saving the company so much money in denied claims. Where and how is this fair to my child and yours. Those bonuses could save many children, and adults as well. We need to stand together and see to it that our children have the future they so richly deserve.
I would love to hear if anyone has any other thoughts on this. Please, don't be afraid to write to every single, house, senate, congressional, member you know. Remember the squeaky wheel gets the oil. I hope you all will help.
I do know that we really need to talk about this to anyone and everyone we meet, the problem is no one wants to hear that a child was effected by a brain tumor, let alone any other type of cancer. The general public doesn't want to believe this is even out there. It scares them, so they won't listen.
I am now devoting my life to fulfill Aimee's dream, to find the cure. Whether I have to do it by lobbing Congress, the FDA, providers or the whole health care industry, I will. I will knock on every door I come to. When they slam it in my face I will give it a few day's and go back again until they decide to open the door and listen to me. I will hold as many fund-raising/awareness events as I possibly can. I will sit in the lobby of the newspaper, TV, and radio stations until someone will listen. I will not take NO for an answer.
I have been blessed enough to met some very incredible people through Aimee's journey, and I know that together we will find the answers. I ask everyone out there write to your state's government officials and yes even the president and demand that they take action in finding a cure and saving our children. Our children and theirs are our future give them the chance to experience it.
Here are some thoughts for a letter:
1...Ask that all providers from coast to coast must share any and all new treatments, alternatives, natural cures. Some may not know that if you live in a state and your only Children's hospital is not one of the FDA approved to participate in clinical studies (which usually are only the bigger ones) your child will never be offered that treatment, and in most cases your child's doctor may not even be aware that it's out there. To me this is a very large problem within our health care system and needs to be fixed ASAP.
2...We need some new kind of tissue data base network set-up. I know that when you have a child with a DIPG tissue samples are not an option, unless the child passes away. In most cases parents are not asked to donate their child's brain tissue, and since we are grieving it isn't even a though that enters our minds. I am an organ donor, so my daughter also wanted to be an organ donor, but unfortunately she could not because of her DX of DIPG. She did however, tell the doctor's that if they didn't take her brain to find the cause of her tumor, they will never find the cure. My problem here is yes we donated her brain but according to the hospital, and doctor's she was seeing in the end, the brain tissue is for their use and their use only. This is wrong, I feel that since it is impossible to collect enough tissue samples from coast to coast what is collected should be shared by all. I also know that some facilities have more research resources available to them then others. If we do not work together we will not find the cure.
3...Demand that the insurance industry must pay for any and all treatments for a child with a terminal illness, When you are told that there is NOTHING else out there for your child then you stumble across a Dr. or clinic that offers treatment not yet approved by the FDA, the insurance company refuses to pay for it. Also, EX: I live in PA, if I go to NY for treatment I am out of my provider network therefore, most claims WILL not be paid because I didn't go to a participating provider. To me this is very very wrong, what gives them the right to deny my child any treatment that may save her life. How can they sleep at night when they put a price tag on my child's life? Now remember these denials are coming from the same companies that our govt bails out and then the top CEO's receive million's in bonuses for saving the company so much money in denied claims. Where and how is this fair to my child and yours. Those bonuses could save many children, and adults as well. We need to stand together and see to it that our children have the future they so richly deserve.
I would love to hear if anyone has any other thoughts on this. Please, don't be afraid to write to every single, house, senate, congressional, member you know. Remember the squeaky wheel gets the oil. I hope you all will help.
Tuesday, February 24, 2009
New Course
As my last post may have offended people, please know that was not my intent. The whole purpose I started this blog was to bring awareness to DIPG's and all childhood cancer. And that through my experience I can offer, support to other families that I am sad to say have been thrown into this ugly world of childhood cancer. I did however go off track only because of an injustice that I felt was caused upon another parent. But, to me now that is water under the bridge. No child or parent should ever have to go through this and I mean ever. It was and always has been my daughter Aimee's dream to put a stop to this so her niece will never have to hear the words your child has cancer and their is NOTHING we can do. Aimee has always been a very caring child, caring more for others then for herself, she was also a very intelligent child far beyond her age. If anyone has had the chance to really know her or myself then you would know this.
Some of you may be aware that last June, and again in October Aimee and I had tried to join a local support group through the American Cancer Society. Only to discover that the support group was for children with Leukemia only. When I had called to ask when and where the meetings were I was told that Aimee and I could not attend, because we have no idea what those families are going through. They were correct because Aimee and I didn't know what it was like to have hope of a cure because unfortunately there is none for DIPG. Not yet anyway.. Aimee's DX of DIPG to me was nothing more then a death sentence. Again I am sorry if I have offend anyone with my words. These are my own personal feelings. This type of tumor has been around for over 30 years and they are no further ahead today with finding a cure then they were 30 years ago.
I have now and actually have since the beginning been focusing mainly on bringing awareness and much needed funding for research to this cause as well as all childhood cancer. To me if know one knows this is out there how will we ever get total support. I am working with lawyers to make Aimee's foundation a non-profit 501 (c)(3) status. This is gruelling work. I would now like to let everyone know what I have been up too, since some tell me that I need to chanel my work to the positive and not negative as in weeks past.
Since even before Aimee had pasted we were working to start a local support group for all families of childhood cancer to be involved. Which now I am working with and organization to do so. So as you can see I am working for the good of all the families. I have been invited to speak and tell Aimee's story at a meeting in March. This support group is for anyone who has suffered a loss of a child not just cancer. I have also contacted Aimee's end of life specialist at CHOP to let them know what I am doing and to see if they would mention me to patients families that live in my area. It is my hopes that these families will soon learn that they are not alone. I also hope that from my own and others past experiences we can support each other. My older two children have even offered to join in as adding a support group for siblings. Even though my children are much older then most brother and sisters going through this they both fully understand what it is like to watch your sister suffer and then pass from this dreaded disease.
I have also scheduled Aimee's walk for September 13th 2009. More on that later. So even though some may feel that I have been channelling my energy for the negative I have not. I have been sending many letters to Government officials to help in the cause of bringing awareness and funding. Which, I am happy to say I have many officials that are coming to support Aimee's dream in September. Even though I have said many times that this is not about Aimee or Aimee's foundation someone needs to host the event so that will be Aimee. I have also invited many families to come and tell their stories, which I am also happy to say there will be many. So as you can see even though Aimee's Army is hosting the event it is not nor will it be all about Aimee but about all the children, past present and future.
My recent anger, and past anger towards others has mainly been due to the fact that some have lost focus on the main reason these support groups have been started in the first place. And even though we all have different opinions as to what treatment is best, or what support is best they are still just opinions none should be greater then the other. I have never nor will I ever push Aimee's dream or her foundation on to others. If you want to be there and support her cause Thank You, if you don't then I feel that is your choice and who am I to try and force you to change. May God bless you all and let us work together being soldiers to win this fight with DIPG and all childhood cancer.
Annette
Some of you may be aware that last June, and again in October Aimee and I had tried to join a local support group through the American Cancer Society. Only to discover that the support group was for children with Leukemia only. When I had called to ask when and where the meetings were I was told that Aimee and I could not attend, because we have no idea what those families are going through. They were correct because Aimee and I didn't know what it was like to have hope of a cure because unfortunately there is none for DIPG. Not yet anyway.. Aimee's DX of DIPG to me was nothing more then a death sentence. Again I am sorry if I have offend anyone with my words. These are my own personal feelings. This type of tumor has been around for over 30 years and they are no further ahead today with finding a cure then they were 30 years ago.
I have now and actually have since the beginning been focusing mainly on bringing awareness and much needed funding for research to this cause as well as all childhood cancer. To me if know one knows this is out there how will we ever get total support. I am working with lawyers to make Aimee's foundation a non-profit 501 (c)(3) status. This is gruelling work. I would now like to let everyone know what I have been up too, since some tell me that I need to chanel my work to the positive and not negative as in weeks past.
Since even before Aimee had pasted we were working to start a local support group for all families of childhood cancer to be involved. Which now I am working with and organization to do so. So as you can see I am working for the good of all the families. I have been invited to speak and tell Aimee's story at a meeting in March. This support group is for anyone who has suffered a loss of a child not just cancer. I have also contacted Aimee's end of life specialist at CHOP to let them know what I am doing and to see if they would mention me to patients families that live in my area. It is my hopes that these families will soon learn that they are not alone. I also hope that from my own and others past experiences we can support each other. My older two children have even offered to join in as adding a support group for siblings. Even though my children are much older then most brother and sisters going through this they both fully understand what it is like to watch your sister suffer and then pass from this dreaded disease.
I have also scheduled Aimee's walk for September 13th 2009. More on that later. So even though some may feel that I have been channelling my energy for the negative I have not. I have been sending many letters to Government officials to help in the cause of bringing awareness and funding. Which, I am happy to say I have many officials that are coming to support Aimee's dream in September. Even though I have said many times that this is not about Aimee or Aimee's foundation someone needs to host the event so that will be Aimee. I have also invited many families to come and tell their stories, which I am also happy to say there will be many. So as you can see even though Aimee's Army is hosting the event it is not nor will it be all about Aimee but about all the children, past present and future.
My recent anger, and past anger towards others has mainly been due to the fact that some have lost focus on the main reason these support groups have been started in the first place. And even though we all have different opinions as to what treatment is best, or what support is best they are still just opinions none should be greater then the other. I have never nor will I ever push Aimee's dream or her foundation on to others. If you want to be there and support her cause Thank You, if you don't then I feel that is your choice and who am I to try and force you to change. May God bless you all and let us work together being soldiers to win this fight with DIPG and all childhood cancer.
Annette
Subscribe to:
Posts (Atom)
