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.

Kicked to the curb yet again

Well after my last post. I thought it was over, but then I got kicked out of two other groups that had NOTHING to do with the first. Well maybe not nothing since all the groups are ran by the same moderators. Except this time I got and e-mail telling me how sorry they were that I had decided to leave the group. I was like wow now people are reading my mind, although not very well considering they were way off. The two groups were PBT(pediatric brain tumors) and PBT angels. Now mind you I never really ever said anything in these two groups but the powers to be in the DIPG group felt I had nothing to offer. I did however get a letter yesterday from one of the powers to be.

Annette,
I wish you the best in all your advocacy efforts, and hope that you are able to achieve all that your heart truly desires.
I will hold you in my prayers that you are able to find a healthy and healing path, wherever you may go.

Now how am I suppose to take this letter? To me it was a direct insult after being kicking me out of the groups. I also feel that it is their way of justifying what they have done to me and two others. Guilt does strange things to people, in most cases they try to twist things around to thier own advantage which is also something I am feeling in this e-mail. What kills me more then anything is how they all use God in their words which I sometimes feel to be very hypocritical. If they really knew God I mean really knew God none of this would have happened in the first place. They would not feel as though their words were the only words people need to hear. Everything I stated in my posts by defending mother 2 was 100% true. I have no need to lie or fabricate the truth. I have nothing to gain. Some can't handle the truth so they change things to make it look like it was all your fault when in fact you were only voicing your opinion. Which I believe I am still entitled to.

I have told others that to me being kicked out was probably for the best, even though I am now unable to help those who may need me within those groups. I firmly believe that God will bring to me the ones he feels really need my knowledge, support, and most of all my respect. He all ready has in the last few weeks. I have been getting personal e-mails and messages on posts from people who have no idea how they ever found me in the first place. Or simply by word of mouth. People know what I have been through and they in turn tell others about me and my journey with Aimee then offer my e-mail. So you can't tell me that this is not the work of God.

I am sorry if I offend anyone here with my talk of God but I am a believer as I also respect those who do not. That is your right as well as it is my right to believe. God bless everyone and please tell me if I am wrong in my thoughts. Trust me I have a very opened mind and will not be offended by your words to or of me.

Trying to understand!!!!!!

As I sit here trying to understand what has happened over the last few days in a DIPG group on yahoo I was a member of. Yes, that is correct WAS. I always thought that the group was set up to help families that are either just starting their journey with DIPG or have all ready ended their journey. But, when one parent offers advise to another about setting up a foundation, she is accused of given inaccurate information only because one of the moderators was unable to do a google search. Now how can one parent openly and willingly call another parent a liar because she couldn't search correctly. I did a google search on the information provided and I had no problems. I guess maybe I might know just a tad more about searching for information then the other. Well after mother 1 bad mouthed mother 2, I felt it was my duty to come to her defense. In doing so I was also placed on moderators status as was mother 2. Then aunt 1 chimed in to answer a question I had in regards to mother 2's post and she was also placed on moderators status. Now what I don't understand is mother 1 totally rips mother 2 apart and the moderators of the group feel that that is OK. Well I guess that's right since mother 1 is also a moderator.
Over the course of two day's this kept going back and forth, I have to say I did take off the gloves and really voiced my opinion about the moderator within that group. I also told them to get their heads out of their butts and remember why we are all there in the first place. That may have been what kicked me out. Oh well there loss.

See several months prior the moderator's decided to kick two very knowledgeable fathers out of the group because they also questioned the moderators. So at that time the fathers decided to start a group on google http://groups.google.com/group/dipg2/members_invite so now at least they can still offer the support and knowledge they both have from taken this journey. The moderators of the yahoo group know that mother 2 and I are also members of the Google group so hence we are placed on moderators status on yahoo. So it is my feeling that within the yahoo group if you dare disagree with any moderators you are then kicked out of the group. I think they think that they are GODS or something. See most of if not all of the moderators of the yahoo group belong to a foundation set-up to bring awareness and funding for DIPG. Well alot of us have foundations for our children, as I do for Aimee called Aimee's Army. What really kills me more then anything which I did voice in the yahoo group which is also what probably got me kicked out is that One foundation is not greater then any other, One child is not more special then any other. Then I added that if my 12 year old daughter was able to see that us raising awareness and funding was not about her or her foundation why couldn't these other parents. I guess to them it is ONLY about their child and their foundation. It really kills me that they feel that their cause is more important then mine, which is actually the same. I don't' think I will ever understand the minds of some adults. Two high moderators within the yahoo group feel that their advise and opinions are greater then mine. Which I don't understand how since neither has or had a child with DIPG. Neither has ever lost a child to DIPG. So how can they honestly think that their information is more valuable then mine when I actually have been there done that. I hope someone can help me understand how or why I was kicked out of the group for simply voicing my opinion. Is this still a free country where we have freedom of speech?????

All talk and no action

It has been a very long time since I have posted. So much has happened in the last 7 months. Aimee lost her battle to DIPG on 12/12/08. I have been working really hard at bringing awareness and much needed funding to help Aimee's dream become a reality. To stop all childhood cancer. Aimee was invited to Harrisburg to tell her story about her battle with DIPG. Maybe, for once our Government will finally listen when the words were coming from a child. Instead of me re-posting everything here please go to www.caringbridge.org/visit/aimeedickey to read all about Aimee's journey.

I am very blessed to have several good people join me in this fight. Unfortunately, it is a fight none of us were happy to partake in. What bothers me more then anything though is how you have several others that say they want to stop this but they don't get up off their behinds to do something. They just sit back and complain about how we need a cure how we need more funding. I have suggested to many of them a letter that I had sent to my states Governor, all they had to do was change the names, maybe reword it a little send it off to their Governor. I know many had but their were many more that didn't or won't but then they complain because nothing is being done. I'm sorry none of us wants this to continue. We need answers and we need them now.

One group that I will forever strongly support is I Could Be Your Child. This group and a few others do go far and beyond the call of duty in getting the word out. They are joining me in September for the Aimee Dickey walk for childhood cancer. Aimee came up with an idea for a National shirt since someone suggested it would be nice if we all wore the same thing on the same day September 13Th National Childhood Cancer Day. Now Aimee's thought process was this is not about her but about all the children. I am listing several foundations on the back of the shirts and offer the shirts to the other groups but they still feel the need to use there own shirts with there foundation on them only. How will we ever get 100% recognition unless we all work together as a team on unit. This I am sad to say I may never understand. If my 12 year could see that this isn't about her and her foundation then why can't some of the others. It will forever amaze me how a child can understand and see the whole picture more so then an adult. I will try my best now to keep this as up to date a possible. Maybe, here I can actually post what is really on my mind instead of beating around the bush not to offend others in my other blogs.