Why do we continue to ignore children with cancer

It's been a long time since I have written. Many times during a journey such as this one needs to take a step back. My heart aches every day when I hear of a child being newly diagnosed with a brain tumor and /or any cancer for that matter. Worst yet when a child passes.

Since I began this journey with Aimee, I can't understand why so many not thrown into this circle continue to look the other way and ignore the fact that children get cancer too. In most cases they do not have the same survival rate as most adult cancers do, but still many feel that the numbers are far to low to warrant much research. Over the years, I have seen bills passed funding approved and yet no money allocated. Now they are wanting to cut much of the funding that was approved even more. How is that fair to our children, our future.

I have also noticed over the last few months recent surges in several areas, where many children are being DX with one form of cancer or another, mostly brain tumors from what I have seen. Yet, when one raises questions as to why the surge, your told "it just happens" and there is nothing that can be done, as for testing. In there eyes 5-10 DX with cancer in one area is no big deal. Numbers aren't high enough. To me a parent the numbers are far to high. One child getting cancer is one child to many.

I have also seen the demand for change where bulling is concerned. Between the adds on TV, Radio, Internet. However, yes that needs attention as well and should be addressed.What many may not realize is the fact that most children with cancer also have many debilitating effects that make them different from their peers. I know my daughter hit many hurdles when she returned to school and was called many names. The best part was most of the name calling came from adults. Not the children. Wanting her removed from school, because they didn't want their child around a freak, or because she would give everyone at school her disease.   Freak, catching her disease, really are you serious. Although, the name calling didn't seem to bother Aimee, as much as it did me. The ignorance of the parents really blew my mind. As it still does today when I see people doing everything they can to avoid not only the child but also the family. Why is it, come September, childhood cancer awareness month, you won't see much anywhere about childhood cancer. Why is it, children with cancer do not get the same respect as others.

I was wearing a shirt one day with my daughters photo on it, that said I'm wearing Gold for my hero. I had one women comment to me that breast cancer is the most important cancer there is. Even more funding should go to breast cancer, so more women would survive If it wasn't for all the funding and attention breast cancer gets she may not be here to watch her Grand-Children grow. My daughter died, so you could be alive today, she will never have the chance to give me grand-children. You go home, and tell your grand-children that your life is more important then theirs. She left in a huff, I guess the truth hurts.

I have been blessed recently however, many more that are learning of Aimee's journey as well as many others, are now becoming aware, and want to make a difference for all the children of the future, many of which are breast cancer survivors, whom were not aware of the fact that childhood cancer doesn't get the same attention as they do. That our future is quickly disappearing, at a rate many are not aware of. Considering, most funding for proper tracking purposes of childhood cancer have been removed, and those doing the tracking do not have what is need to processes the data correctly, and in most cases are many years behind. Therefore, statistic are not as up to date as they should be, not just for childhood cancer, that's for all diseases.

I hope and pray that one day, we will have answers and a cure for all cancer, as well as all disease. People need to put their greed aside, and put more value on human life, then what goes into ones pocket.

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.