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.