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

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.