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.

The dreaded day

September 27th was the worst day for my life. When the doctor called me into the other room and told me that Aimee had a tumor I was in total shock. How could this be possible. The CAT Scan she had in early September showed nothing how can a tumor grow so fast. Apparently the other hospital only did the CAT Scan of the front of her brain, the Children's Hospital did the whole brain. She is very active, strong and determined young lady this can't be happening. After I got a hold of myself and walked back into Aimee's room she had a smile on her face and her hand out. I said what's the hand for and she said you own me $10.00 I told you I had a brain tumor. The women in the room was a child life specialist and we just looked at each other then at Aimee who still had her hand out. I gave her the $10.00 she smiled and said thank you and put it in her pocket. Now it was time to call the family. Early the next morning about 5 am Aimee and I went for a walk in the garden at the hospital. It was then that I told her everything that was going on, to the best of my knowledge. There were some question that I couldn't answer. She had asked me about a 9 year old girl from her school that had died two year prior. She asked me if her tumor was the same as hers. I told her yes, then she looked and me and said I have a lot to do because I only have about 9 months left. My heart sank, listening to my daughter talk about dying. She told me that she wanted to donate her organs like I am and then she wanted her body cremated. It wasn't until the next morning that I found out just how bad Aimee's tumor was. Her new cancer doctor (Dr Etzl) showed me the MRI and I was as amazed, as was he. The tumor was taken up the whole Pons section (middle) of the brain stem. Aimee should not have been walking, talking or doing much of anything but like I said she is a very determined young lady. It is now Friday and Aimee's dad had called everyone and anyone to tell them that Aimee was dying and that they needed to come and say goodbye. Now mind you Aimee's dad and I haven't been together for 8 years and we don't get along at all. Come Saturday there were so many people coming to see Aimee and she had no idea who any of them were. Her father's older 3 children whom Aimee has not seen or spoken to in 8 years came to the hospital pushed me and my older daughter (23) (i also have a son 25) out of the way and decided that they were going to care for her. I held my tongue in order to keep peace for Aimee. Now just to fill you in a little Aimee's dad's other children are 27, 26, and 25, one of them is going to school for nursing so therefore she could better care for Aimee then I can. What a joke. Saturday and Sunday my daughter Jennifer and I were barely able to even get into Aimee's room. Even after Aimee's dad was told no several times by different hospital personal he had someone bring puppies into Aimee's room. This is against the rules because of all the sick children in the hospital. He has no respect of anyone and does whatever he wants. By Monday I thought Aimee was slipping more and more. I wasn't sure if it was from all the excitement over the weekend or that she was getting worse. The doctor wanted to have a meeting with Aimee's dad and I to talk about options, he insisted that his 3 children also attend this meeting. I was like they have no say in what goes on here. He felt as though they did. Although, he didn't think my oldest daughter should have been there, which she wasn't. (my choice) Anyway, all they kept saying was how they all felt that Aimee being sick was all my fault. As always, passing the blame on to someone else. (he beat me and my kids for 10 years before I was able to get away) Anyway, the doctors had a new chemo drug that works hand in hand with radiation and they wanted to try it on Aimee. Aimee had to sign the papers and agree to it more so then we did. Later that morning the doctor talked to Aimee and explained everything to her. She asked him if this new drug will save her, he told her he didn't know because it was so new. Then she asked if it could kill her. He told her yes, that was possible. She looked at him and said my Mom always told me it is better to try and fail then not to try at all. Besides, with my help you may one day be able to save another child. The doctor had tears in his eyes. In all his years of medicine he has never met such a strong child. Aimee was scheduled to start the new drug and radiation on Thursday October 4th. On Sunday she started to complain that everything she was eating was going down the wrong pipe. So on Monday the doctors ordered a swallow study test and sure enough everything she was eating and drinking was going into her lungs. During the day I noticed that Aimee was having a harder and harder time breathing, it took the nurses several hour before they finally decided to put her on oxygen. I could tell that her breathing was becoming labored because I have Asthma. Her father and his children were forcing food on her even though she didn't want any. Plus, according to the swallow study she was only to be given the mixture that they suggested. But, his girls one being a nurse and all know better. Aimee became so sick later that day. By 2:00 am Tuesday morning, Aimee was transferred to the ICU the oxygen was not helping her at all her oxygen level dropped so low I thought I was going to lose her that night. I have not left the hospital since she was admitted, I was with her every step of the way. I called Aimee's dad and he and his children were at the hospital right away. I also called my daughter and she too was there quickly. Once Aimee arrived in the ICU the doctor came to us and said we can make a choice either let her go now or put her on a ventilator. I was floored, how could this doctor be so cold and heartless. I said she is scheduled to try a new drug on Thursday don't you think you should give her the chance. Put her on the ventilator now. After Aimee was put on the ventilator she still didn't seem to be breathing right. After I asked several questions they finally did a chest X-Ray and it showed that Aimee's right lung had collapsed, therefore she couldn't breathe. They put a chest tube in which helped for a short time. I was told later on Tuesday that Aimee could no longer be on the list for the new drug because she was on the ventilator. In order to try this drug you have to be mobile. So all Aimee could have was radiation. Regular chemo would not work on her type of tumor. No mind you during all this time it's only my daughter Jennifer and I from my family with Aimee. My son, father, brothers and sister all live in PA. I felt so alone especially since Aimee's dad and his family were trying to shut Jennifer and I out. One of Aimee's sisters made the comment to me that I seem to not care at all because I am not crying like they all are. They really have no idea what I am going through. They also made the comment that my family doesn't care because they weren't here as soon as they found out like they were. I told them that my family has nothing to feel guilty about therefore there is no need for them to hurry. Aimee knows how much she is loved by her brother Bobby my father and sister. They did not like it very much when I said that. Now mind you Aimee's dad also had no contact with his children for the last 8 years so what gives them all the right to tell me what is best for Aimee. They had brought her some clothes, now Aimee is 11 at this time so do you honestly think she can fit into a size 6. That's what she was the last time you talked to her 8 years ago. Aimee's Dad was trying to tell me that his kids love Aimee more then my kids do. I was like totally floored. I had finally reach my boiling point, I looked at him and asked him what is Aimee's favorite color, music, what size clothes does she wear, what is her favorite subject in school, what are her favorite hobbies. Better yet what is her favorite animal. Do you know he couldn't answer not one of those questions, and he and his kids love Aimee more then my family. Get real!!! His kids told him that he needed to fight for custody of Aimee because they felt as though he could care for her better then I can. When he told me that I said try it. Then at the same time I will increase your child support way up there, I then too would be able to provide for her as well as you can. Better, because I will have your money. He pay very little for what he makes and has threaten me very time it was time to raise it. So, in fear of my life I never did. Now with everything that is going on I could give a rats ass about him or his treats. I told him not to mess with me, because I am a mother under a lot of stress right now and if he thought going to court was a good idea he was dead wrong. I said, how can you even think about something like that when your daughter is laying in that bed fighting for her life. All you care about is how soon you won't have to pay child support. I told him that he and his kids can all go to hell! Aimee's dads kids finally left on Wednesday (they also live out of state) and that is when my son, sister and dad arrived. When Aimee's dad saw my son he almost fell on the floor, here is this kid you use to beat the crap out of and now he is much bigger and stronger then you. Go head try and mess with him now and see what happens. He did make the comment to my son about now my son can hit back and probably do some damage. What a joke. Well since Aimee was on the ventilator she was unable to talk. I had taught my kids the ABC's in sign language when I was teaching them how to talk. So, Aimee and I were able to communicate through sign. More later.

Where do I start. My 12 year old daughter was diagnosed with an inoperable brain stem glioma on September 27th 2007. That was a day I will never forget. For several months prior, she was complaining of headaches, being dizzy, which I thought was just from the heat living in Arizona. During the summer months we were having car washes every weekend to raise money because Aimee's cheer-leading team was going to nationals and they needed to raise their own money. The doctors were telling us her symptoms were from the heat, and that she was dehydrated, or that she had a sinus infection. So for three months she was taken several different kids of medicine which didn't seem to help her much. After the nationals in August, she seemed to get worse. School started August 13th and she was get sicker and sicker with no answers coming for the doctor. Finally on Sept 4th I took her to the ER. They did a CAT scan of her head and a chest X-Ray to see why she was having a hard time breathing. According to the ER doctors there was nothing wrong with her. They referred me to a different pediatrician. We finally got an appointment for September 25th, during that visit the doctor made Aimee jump on one leg at which time she lost her balance several times. Plus, her kept asking me if there was alcohol in the house or drugs, no I don't drink or do drugs. Then he asked about her school, I said I doubt it because she went to a very good school. Now mind you this is a cheerleader who can do stunts and now she can't even stand on one foot without falling. He referred us to a Neurologist which wasn't going to be until mid October. After leaving the doctors office Aimee became very sick to her stomach. She started to vomit in the trash can outside the office building. I wanted to go back up to the doctors office she wanted to go home and sleep. Later that night she told me that all the doctors are wrong because she had a brain tumor and not a sinus infection. Of course I said no way that can't be possible. The next day Aimee slept and threw up just about all day. Thursday September 27th Aimee woke up and really wanted to go to school even though she wasn't feeling very well. It was picture day and she didn't want to miss it. We rode our bikes to school as we were riding Aimee started to sway all over the rode. I joked with her that she was going to get picked up for a DUI, she said no I am going to pass out. She did. By the time we got back to the house and called the doctor Aimee could barley walk, and she felt so sick. I called the doctor and his nurse told me to take her directly to the Phoenix children's hospital, she was going to call them and let them know I was on my way. As soon as we got there they took Aimee for a CAT scan. Then they came and told us she needed an MRI because the CAT scan showed a shadow. They had moved us to a different part of the ER now and told us that Aimee was going to be admitted for more test and that a doctor will be in soon to talk about the MRI. Well we waited and waited then a young women came in and told me to go over to the other room and she was going to stay with Aimee. The fear that was running through my body at that time, I can't even describe. More to come later.