Saturday, July 26, 2008

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.

Thursday, July 24, 2008

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.