Childhood cancer awareness month

September is Childhood Cancer Awareness month. The GOLD ribbon is the symbol for childhood cancer. Did you know that over 12,000 children are diagnosed each year. 4,500 die each year from cancer and over 40,000 each year are in treatment. Did you know that brian tumors are the number one cause of death from solid mass tumors in children, more then asthma, cystic fibrosis, and Aids combined. Here are some things you can do to help spread the word. Visit www.teamunite.net to find out many ways you can help in spreading the word. Maybe even purchase some Gold Gear in support of all the children past, present and future that are or have been and unfortunately will be fighting this monster called cancer. To learn more about Brian Tumors please visit www.icouldbeyourchild.org see the face and read the stories of the devastation these families go through in caring for a child with cancer. Also September 13th, Aimee's Army www.aimeesarmy.com will be hosting the annual Aimee Dickey walk for childhood cancer at Nay Aug Park, Scranton, PA 11-5. There will be many families to share their stories, several state and federal representives, music and so much more. PLEASE, I ask you all to help us parents save our future, remember it could be your child, grandchild, or even a close family friends child. HELP stop it now before that happens. Thank you and God Bless,Annette (angel aimee's mom) forever 12

Possible causes to brain tumors

Hello everyone,
I am hoping that all that come across this blog who have experienced DIPG/brain tumors will take the time and fill in this Q&A Survey about possible causes into brain tumors and mail it back to me. I do not need any names so there is no HIPPA violations involved. After finding out that when I donated Aimee's brain, I was told it will not be tested for anything other then new drug trials to see the response. Personally to me sine every single tumor is as different as the child then the reaction will also be different. We need to know what the triggers are before we can even come close to finding a cure. Just like with an infection, if the doctors don't know what type it is they can't give you the antibiotic that will cure it. Please feel free to add any other thoughts you may have as to what can be a cause. I know filling this out is going to be very hard, but please always remember you DID NOT cause your child's illness.

POSSIBLE DIPG/BRAIN TUMOR CAUSES

ENVIRONMENTAL,
CHEMICAL or TOXINS
Landfills(miles)
Nuclear power plants(miles)
Other Chemical Plants(miles)
Drug plants (where there made)
Cell Phone Towers(miles)
Power lines or Power Boxes(miles)
Water Treatment Plants(miles)
Mold (Black)
Pesticides (what kind)
Household cleaning supplies (commonly used)
Asbestos's
Led Paint
Burning garbage
Gases or Oil Heating
Other heating (Wood, Kerosene, Coal)

LOCATION
Location at birth (city, state, zip code)
Location at DX (city, state, zip code)
Years at each

MEDICAL
Ear Infections
Pre-Mature Birth
Low birth weight
Labor and delivery
Stress During Pregnancy
Pre-natal vitamins
Other Medications while pregnant
Birth Control pills
Childhood Vaccines
Vitamins
Medications
Headaches
Moody
Head Lice
Chronic Illnesses
Allergies
Accidents (falls, head, other)

GENETICS
Gender________Male_________Female
Twins (gender)________Male__________Female
Family history of Cancer
Blood Type

MISCELLANEOUS
Cell phones
Microwaves
Refreeze plastic water bottles
Bottled water
Tap Water
Ipods (little ear phones)
MP3 players (little ear phones)
CD players (little ear phones)
Hand held Video games (w/ear phones-hours )
TV Video games (how many hours)
Computer (how many hours on)
Pets (mostly exotic)
Diet
Outside home Actives
　
OTHER THOUGHTS
_________________________________________________
_________________________________________________
　
　
The location at birth and DX will help me with my clustering project.
Since some doctors are stating that children are born with a DIPG/brain tumors that can help with the tracking. As to what the possible triggers can be.
Most of these are a simple yes or no, some do however require a much more detailed answer.
If you can also please parents share occupation both at birth and DX. I have read somewhere that parents working with pesticides or other chemicals prior to conception can have ill effects on a child such as cancer.
Thank you to everyone for participating in this quest to find an answer. Also, note that due to HIPPA laws no names are required but can help if I should have question. I will not share the information on this form with anyone. The outcome will be done as a graph with statistics only showing numbers. It is my hopes that I can get meetings with the CDC, FDA, SEER, and Congress to explain the outcome in the hopes to get answers and more funding to go towards finding answers. Aimee has stated to me over and over again, that we can test drug after drug on these tumors but until we can have a conclusive answer to the cause the cure WILL NOT BE FOUND. It is the patient that will suffer more from the ill effects of all the chemo drugs more so then that of the tumors themselves.

Please, mail completed forms to.
Aimee’s Army
P.O. Box 37
Scranton, PA 18504

If you should have any question please e-mail me at alm_42@yahoo.com
Or Annette@aimeesarmy.org
　
　
　
　
　
　
　
　
　
　
　
　
　
　

Brain Tumor Awareness

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

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.

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.

What is happening to the youth of today???

I am sorry but I am going to go off track a little here. Something happened to me today that I will never understand. I was sitting watching the news when all of a sudden I hear a crash and glass shattering. Upon searching to see where the noise came from I noticed that two front windows in my home were shattered. I was totally in awe as I noticed the two boy's that threw the rocks as they were running and laughing, were not much older then my daughter that had just passed away from cancer. Now, as I sat here in wonderment I just couldn't understand why they did this. After calling the police and finding that there has been many homes and vehicles vandalized over the last few weeks within a two mile area, did my wonderment increase.
Where, are these boy's parents how can they allow their children to go astray, don't they care or is it that they are just so wrapped up in themselves that they don't have the time.
Here I am a mother who had just lost her daughter to DIPG a type of brain tumor and would give anything in the world just to hug her, hear her voice and tell her I love you, and you have these rotten boy's running a muck. This was probably the second time since my daughter became ill that I sat and cried why her. Why not those rotten boy's. Here was a child who always did good and tried to help everyone she met and then you have these boy's go around destroying anything and everything they can. for a moment there, oh, how I wish that my daughter or any other child didn't suffer as they did from DIPG, I really wished that those boy's were the ones that got sick and had to suffer, then maybe and only maybe would they and their parents look at life in a different light. After a moment, I did ask God to forgive me and to please guide those boy's down a better path. My good friend, also came over and she has worked at the local prison for over 18 years and she told me that things just aren't as they were when we were kids, she told me that she has mother's/daughter's together in prison for drugs, the daughter's children were in foster homes and from what she told me little hellions, that will soon also be placed in an institution. Now what has gone wrong in our society to make this happen, why would a mother/grandmother want to get high with her daughter and then blow off the children/grandchildren. Can anyone tell me why or how our society can allow this to happen. I don't know maybe it is just that I came from a very loving home and always gave that love to my children, I also taught them to take responsibility for their actions. To respect others and their belongs no matter what it may be. Maybe, for the same reason we still don't have a cure for childhood cancer, and brain tumors, maybe because everyone turns and looks the other way. No one wants to believe that any of this is out there. I guess that is why some say we live in a very ignorant world. I know what I will be praying for tonight and probably for sometime to come, for all the lost souls in this world when they are found maybe just maybe the ignorance will go away. And we will have a better, safer, and happier world.

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.