Round 6

I did not now that one person could get there heart shredded so many times. I have the best friends and the greatest Drs. We had the best fundraiser. It was bitter sweet to my friends and I. We already got the news that my sweet gift was given less then 2 years. ( I hope she proves them wrong again ) I will fight for her and for my friends who have NF. We raised over $3000 for NF. I am proud of all of us. It was a great event and there was fun. There was also a few moments of tears with another mom who lost her son to NF, she let me cry as she knows I am losing my child too. Bitter sweet. I also got her crying but she was happy that I am willing to take a few lumps and have her support.

I have not updated in awhile as I got news that she has about two years. This drives me to my dark place. I have sort of climbed out, we must, as it is the only way.

Round 5

This is my way of trying to let go of the hurt that is in my heart. I know my heart is shattered, broken and I don't think anyone can fix it. As I have said in other posts my Dad and my G had a bond, yes had this bond. 1-6-2008 my Dad passed away with me holding his hand. He had stated that morning that he wanted me to leave the room as he wanted to spare me that hurt. I just said " you never left me and I will not leave you". I've done some things that were hard for me to deal with and I have always been amazed that I survived. I must tell you that I woke at 4 am and went back to the hospital as it was like I was being pulled there. I snuck into the ICU to be with my father. We got to talk for a few hours before pain took hold of my father and I prayed for him to pass so he didn't suffer. During those hours, he first tried to talk me into leaving and he learned that nothing was going to move me, he asked for one thing from me. I agreed. He asked me to let him go and no pain. We called in the nurse and Dr and my Dad asked the Dr to put him on hospice and to listen to his daughter and do everything I said to do. Dr nodded, papers were signed, and hospice began. As first order of control over my dad, I ordered xanax to calm him and a small dose of morphine and zofran. This impressed the Dr and we stepped into the hall as my Dad dozed, peacefully. I asked the Dr if he could be put on the donor list for a new heart, the answer was no as he had diabetes. I argued that that was controllable but the " system" didn't care. Shot down, I returned to my Dad's side to do whatever I had to do for as long as it took. I also began trying to get my mother back to the hospital. My Dad wanted to say good bye to her. That was one request he asked me to see too. It took 3 hours for me to get her back. My Dad suffered pain worse then anything I seen and I kept saying please Daddy let me do this. He couldn't talk but shook his head NO, once in awhile I heard him moan "lizabeth". What he called my mom. I could no longer bear to see him in such pain, I was about to disobey my Dad and pleaded for forgiveness. I called in the nurse and nodded at that moment my mom came in and I just yelled at her, " go to Daddy so he can see you" and to my Daddy I said Mom is here look. He looked at my mom and then he turned to me, and with tears in my eye's I nodded to the nurse who then did the most humane thing, he gave my dad a lethal dose of morphine, if the nurse hadn't I was going to and the nurse knew this as he left the morphine bottle out on the table and looked at me, patted my back and whispered " GOD bless you". So with my Daddy looking at me he took his last breath and at that moment I howled with pain as my Daddy died. My heart broke. I did dumb things after that. I took off the pads that were supposed show heart beats but no longer did, I shut off machines, I pulled up the sheet and covered him and tried to give his body respect. The Dr gave my mom 15 min. to talk to him and my sister called my other siblings so they could say goodbye, this to me was hard as I knew he was gone, but I gave them this so they didn't feel guilt. I could no longer take it after 15 min's and had them declare him gone. I made a couple of family calls. I kept holding his hand and kept taking out needles and pads. After they all left I went to the nurse who helped me and he took me and just let me scream and cry and he told me that he was so grateful to me, and that I was so strong to do that for my Dad. I left to make the 2 hour trip home... to shatter my kids world. Now, you all most know how close to my Dad I was. I felt my world just ended, but before my Dad got bad, before he could no longer talk he told me one thing that I still hear. " I got to go so G won't be scared, forgive me for leaving you but know that I love you so very much" I said " I know, Please take good care of her when she gets there. I love you more then you ever knew Daddy, Thank you for always loving me so much." As I write this I feel how heavy my heart is in my chest and there is a lump in my throat. I don't think there will ever be another person besides my child that will make me feel like that. I was wrong again. If you ever get the chance to meet me, make it count. Because if you get behind this huge wall I put up, you have a loyal friend that will stand up for you no matter what. After my Dad passed, I gained weight, even though I didn't eat, I got sick and then sicker. My friends were telling me to go to the Dr.'s, I refused. I got sicker still and finally one night I knew I was going to die. I thought first of my kids and didn't want them to find me, so I went to the hospital, where I refused pain medication, was told I was very sick that my appendix ruptured weeks earlier. I honestly didn't care if I died. I prayed for it. They took me into surgery and I remember looking into the eyes of the guy putting me to sleep and said Thank you and he looked at me odd. Now anyone who's had surgery and they knock you out it's all black time as I like to call it. My world didn't go black, it got real bright. I was in this wonderful light, no pain and I felt safe for the first time in a long time. I then seen my Dad, I wanted to run to him but I couldn't, as I had a choice to make.. before I could go to him I had to choose. I could stay or I could go back. I know I said why would I go back to pain and heart break? But as I looked at my Dad I seen he was well, but sad, he didn't want me there. So with my head bowed I came back. I came back to so much pain that I swore I choose wrong, I was heart broken again as it was like losing my Dad again. It took me a long time to recover. I also knew I was trying to die. I was tired of the pain of this world, of watching kids die, of watching my own daughter die slowly. I came back first because I obeyed my Dad, I stay because of the love I have for my kids. I will be there to make sure all goes well for them. There is no end to a parents love. I have recovered from that appendix rupture, but like I said I was real sick, I had to have 2 more surgeries before I started to feel OK again. I lost all the weight which was just poison in my body. Yep 15 pounds of puss and poison. I am amazed I lived. I have great friends. In Sept. I was feeling like my old self again. I got a message that tore me apart again. My friend in England passed away in his sleep. My heart got shredded again. I then started to try to push people out of my life, some refused to budge. I pushed them away because it hurt so much to lose them. Like I said I have great friends. One who is like a sister to me, She realized what I was trying to do, forced me to go out with her where she got me ripped. I mean so drunk that I hugged her potty for a long time the next morning. I love her for that. She made me come back to life again. She gave me the ass kicking I needed. I've made so hard choices and weeded my life of the weeds and only allow positive people in my life. It's because of them that I survived learning that another drug failed my daughter and we have no options left but pain control. I've also learned I am lonely. I am looking for that one special person who I need. I've been looking for almost 2 years now... I think that there in my life but I haven't realized it yet, I hope to know some day soon but I will wait.

Round 4

So let's see.. I left off with heading out of Philly. The next few days after leaving there were very busy. I took Gabbie to talk to a "shrink" and was happy to learn, she wasn't depressed or suicidal at all! In fact she was very happy and so relieved that we fired Philly. She hated it there as nobody would listen to her about her belly. So 2 days later we are going to meet another Dr. in another Children's hospital but this time we went to Danville, PA. We met the most fantastic belly Dr. He's Dr. Max, not his real name but it is what G called him. When we got there he felt her belly first and had a very odd look on his face. At this point my daughter's belly was distended and she looked like she was 6 months pregnant. In fact she asked me if she was... humours a little but not really as she has no idea how babies are really made. She still don't and she is 14. My daughter has long ago found her safe place and Dr.'s tell me to let her stay there. She is happy and that is all we care about. Now those who know me know I don't leave home without my laptop or her most recent scans. So I was able to put those up so Dr. Max could look at them. He said under his breath Holy Shit! The fucking dumb assholes. Then he starts pointing stuff out to me and then realized I knew how to read them. He goes she needs surgery and soon. So it was scheduled for the next week, I then got a call from Dr. Max himself to say he needed to postpone it for another week as he needed a special tool and he wanted 2 other surgeons in there with him. So we waited 2 and a half weeks to go have mega belly surgery. Now G always bounces back real quick from surgery. She hates the hospital and would rather be home. My daughter didn't bounce back. We were in there for over 2 weeks, I almost lost her.. she just laid there, she wouldn't eat, talk, nothing. I was half crazy from worry and not sleeping. I didn't know how to get her to come back to me. I tried everything. I bought her games, bribed her with money, anything just for her to get moving and get all those tubes out of her. Going into the 2nd week of being in the hospital with her, my Dad suffered another slight heart attack. As I said they went hand in hand when it came to scaring the shit out of me. I called him everyday and all he wanted to know was how Gabbie was. I couldn't lie to my Dad, never have been able to. He always seen through it and seen it in my face and heard it in my voice. Now I was trying to figure out how to get to him when Gabbie was so bad off. That night something wonderful happened. We got a visitor. From a dog. The hospital had therapy dogs that came to the sick kids room, we hadn't been allowed visits as she was doing so bad. I snuck the dog in, he jumped up on the bed ( no they shouldn't do this ) but he did and he just lay on her legs and licked her hand and all of the sudden she started to giggle. Then the smile. I was crying so hard at the time, the nurse comes in, the owner of the dog is begging us that he was sorry that the dog has never done this before. I said it's fine, it's what she needed. I asked the nurse not to report the dog as he was doing his job. He stayed with her for half an hour. laying on her bed and licking her hand. All the nurse said was I wished I knew this sooner, I'd of brought him in. After that we got regular dog visits form all sorts of dogs. But that black lab was there with her the most. That was what got my G going and laughing. She got up, she walked around, she made pictures for that dog. That night with G still giggling I called my Dad and put G on the phone. She was laughing and telling him about the dog. She told Dad that he had to get better so she could come see him. They made it home from the hospital at the same time. I drove G up and she and her Grampa was together. It's what they both needed. He was hurt that she ended up losing her large intestines and now has a poop bag for the rest of her life but G said at least my belly don't hurt. We thought we would be able to re-connect her colon. The Dr had made a J-loop so when she got healed he could re-connect it. He was so sure he got all the tumors out. I thought so to as I didn't see a one on her scans, but there must of been a spidery leg as I like to call them because they came back and took over the j-loop he made. Dr Max cried when he told me and he also retired. He said it was time for him to do something important. He opened a clinic for kids with odd diseases. She couldn't ever be re-connected. Gabbie took this hard but I took it worse. I got real angry because it wasn't in my kids head like that bitch from Philly said. She made a huge mistake and it cost my daughter her colon. Her belly is back to being distended. It's not as bad as it was before. I have a letter from that bitch to my home Dr who put in writing that there wasn't anything in her colon and it was all in G's head and she was "worried" about her mental well being. My Dr gave me the letter and said do what you want with this. He goes bet she feels real dumb now and sort of has poo on her face. This wasn't the first mistake that this bitch made but this one was the last one she made with MY child. I always thought it was odd that G would cry the whole time going there and the whole time there and all the way home and would be like that for 2 days. She don't do that anymore. She smiles and laughs when she goes to see her Dr.'s now. She makes them key chains, took them doughnuts and coffee, makes them cards. When she shows up, we don't wait in the waiting room, G goes back with what she calls "her girls". She tells them stories, and smiles. They give her small little jobs like filling the lollipop jar or taking magazines out to the waiting room. She takes her time going to visit the Dr. She always hugs him and tells him that he is the Greatest Dr in the whole wide world. I've seen this man cry for some of the stuff she has gone through. He is always on call for her. This little girl made that whole office different. She changed how we all look at life. Mostly me. I always thought it was the parents job to teach the child but she taught me so many lessons. The first mistake that the bitch made was her chairi, this is where the brain falls into the spinal canal and it hurts like hell, it backs up c fluids, and it can cause death. When we told her G was having headaches and hiccups ( that is a warning sign) she said she was depressed and put her on Prozac. Not only didn't that help but made everything worse. My home Dr ordered stat MRI's and then back to his clinic, where we learned that her brain wasn't where it was supposed to be. He yelled so loud at her. He said get her the hell out of the exam room, this is an emergency! My daughter had brain surgery the next day. Like I said that was the first real big mistake she made but I think to err is human. But when it happens again.. nope your done. 2 life threatening mistakes. I made sure that there would never be a 3rd. She wasn't the first Dr I fired nor was she my last. I am sure at some point I may fire another Dr. this one is mine so we will see. My daughter isn't a number, she is a person and deserves to be listened too. Just because she has odd things go wrong don't mean you ignore her or say she is depressed. Going to that Dr made her depressed. Hell she made me depressed. UGH... another time I will go on. I need to take my ulcer medication. But I need to get this out of my system.

Round 3

Did anyone else notice that I've put this in rounds. The heavier you are the more rounds you get to go unless you get a K.O. I will be honest and say I'm a light weight ( 125 ). But here I am put against much more talented and "experienced" people.

So we are in Philly. Ahh the city of "brotherly love"... can anyone say bullshit? At first it was an OK deal. Right off it was decided that we would enter a trial of methotrexate and vinblastine. I am sure I did not spell these chemo's right. I had hope and so did G. We were told of the side effects. Nausea, puking, hair loss. I didn't care about those things, I just wanted to stop and kill the tumors. First dose of chemo nothing, 2nd dose... well let's just say 3 hour trip home was unpleasant. She got very sick. She threw up everywhere and she ended up pooping herself. That alone killed her spirit. I was better prepared for the next round. I brought the throw up bucket ( it's still in my car ). I also took to speeding. I do not recommend this to anyone. I knew that if she had to go... she meant it. So I went real fast. I did get stopped once...83 in a 65. The trooper started his "talk" and I just said listen I got 2.5 hours to get home before she starts to throw up and has bad poops. If she does any of these things you are going to help me clean up the car. He tried to tell me that speeding with her in the car was worse. I said if your a parent who just gave your child chemo and she poops herself that is worse. I said so give me my ticket so I can go. He shuffled back and forth and said I can't. Please drive safe. I said Thanks and I do... always. I could race cars at this point. I can find an opening and go, I can drive on the sides ( also not recommended). When she woke up one day and a huge hunk of hair come out, I went out and chopped my hair off. It was the first time in a long time I had real short hair. I figured if she was going to lose her hair, so was I. She never did lose any more. She was on this chemo mix until her scans 3 months later. No change so we did another 3 months. This time there was change. Those tumor bastards grew. I was crushed and so was G. We then had to wait 3-6 months before they could try anything else. This pissed me off. During this time the tumor on her C spine had grown and I had a "mommy" feeling. I fought with the surgeon and won. He was for waiting 3 months, I wasn't. He did the operation and he came out to tell me I made the right call. What the MRI didn't show was that it had budded. Meaning another 3 months and it would of gone into her spine and been to late. At this time I respected our ONCO. I will call her bitch... because I can and she is. I was still going through a divorce and it wasn't easy. Everything I wanted to do, he filed a court order and I had to go to court to get her treatment. He was a dick then. He isn't anymore. He respects me and what I've done. He don't ask questions anymore, as he trust me to make the right choice and I can talk to him now. It's nice. It took us years to get to this point. We both made mistakes but we came along way.

I really am trying to pick through my head for how things went. They get jumbled up. So many hospital stays, so many holidays spent in the ER, so much. Our next drug was R115777. This to failed in 6 months. We had ports in and ports out. G has one now and it's not coming out as she has no veins in her arms anymore that can be used. After the R one we did Thalidomide. This failed in 3 months. Oh yes and the 3-6 month waits between drugs. So months went to years. G started to have belly issues. She couldn't poop. heavy doses of laxatives didn't work. She would scream in the bathroom trying to go. More MRI's. I can read them now and that sucks. But even I could see the tumors in her belly. The Surgeon agreed that she needed surgery on her belly. For some reason to this day I don't know why that bitch onco refused to allow it, or say it was in her head. I have MRI's and x-rays to prove it wasn't. So it happened we were again admitted to the hospital for belly pain, not being able to shit. And the next thing I know G is on suicide watch. I went from mad to pissed off in 1 second. I made calls, I asked the Dr's to please come in the room and I did my G proud. I fought like a mom should. I then told them I was leaving and taking her to a different hospital as they couldn't seem to understand shit. I was told that I could go but she couldn't. OH this is my favorite part. I said want to bet. I was then told they were going to get there guards. ( OH THIS SCARED ME...NOT) I said great...I pulled out my phone and said I am calling the real cops and um yeah I am filing charges of kidnapping and holding us against our will. And when the real cops got there, they would make there "guards" care my bags to my car and take them out in handcuffs. Gee we got discharged. I took my kid home. I was fine until I got 25 miles from home. I had to pull over where I was so sick I couldn't stop. This is when my cell phone starts ringing. G answered very happy and said Mommy can't talk right now, she is throwing up in my puke bucket. So this went on for a good hour. I thought I was over throwing up so I started to drive again. I get as far as 3 miles from home and I am pulling over again. Yes I was sick yet again. I was crying, throwing up. I was at that point in break down. I managed the last 3 miles, where in my drive way I am sick again, throwing up, crying. G just went happily into the house. I did something then I normally don't do. I went in I took a zofran and I medicated. ( I took xanax ) I then climb in bed and bawled. I was broken. All I could think of is how was I going to get G fixed. I did something I always do... I called my Daddy. Let me tell you a little about my Dad. He had his first heart attack at 49. They gave him 7 years. He lived over 20 years more. He was my best friend. He was always there for me. ALWAYS. I was and always will be a Daddy's girl. No matter what he was always there for me. He has spent weeks staying at my home. He was a great Dad and I hope to be as good as a mother. He said to me calm down, get some sleep and then tomorrow... make them all pay. Get G to a head shrinker, so they know she is sane, get another hospital to look at her MRI's. But right now sweetie go to sleep. Then he asked the question he always did. Do you need Daddy to come. I said not now but later yes. I am going to tell you something else about my Dad. Every time G had a problem, so did he. He got worse every time she did. Like I said before there was this bond between them. If he went in the hospital it was only a matter of time before she went and vis versa. At one time I was going between 2 hospitals. I threatened to have them put in the same hospital so I didn't have to travel. I am done for tonight... this is like purging something bad out of your system. It needs to be done in steps.

Round 2

So let's see where I left off.. oh yes back to the hospital after Christmas. Then, 9 years ago we went to Children's University of Syracuse. After the first stay I learned to take a lot of clothes. Gabbie cried all the time about her arm hurting. They told me it was ''backed up blood'' from the tumor in her chest. Even then I was like... WTF?? They did all sort of painful tests. Needles were in her arms all the time, they ultra sounded they x-rayed, they did everything but a fucking MRI that I asked for nicely, then not so nicely, then I plan said out doing the fucking MRI or your fired. They made her wear a compression sleeve that was tight and hurt her. She would beg me not to put it on and I couldn't stand to see her in so much pain and my " mom radar" was going off. Well they did get around to that MRI of her arm after me screaming my head off. The Dr who did her chest surgery went in. I thought this was very strange. Hours later I was still sitting in the same chair waiting for someone, anyone to come out and talk to me. I didn't expect it to be the Dr. I remember looking up at her and her dropping to her knee's in front of me and saying " I am so sorry" I said there is a tumor in her arm right? You can take it out right? She said there is many tumors in her arm and they can't be removed. I thought I couldn't go any deeper into that pit but I was wrong again. I cried ( howled would be more right). She kept saying she was sorry. I asked her what was going to happen. She said she didn't know as she has never seen NF this bad before. So we got to meet a new Dr. I'll call him Dr. Asshole. He was a pompous ass. He met us, was very cold. I asked him for help. To please cure my child. He told me there was no cure. She had the sever kind of NF and I should take her home and love her as she was going to die. Yes point blank. I just looked at him for a moment and I am so grateful G wasn't there to hear him say that. He just stared at me like some GOD. He handed me some crappy ass-ed pain medication scripts. I took them, looked him square in the eyes and said your fucking fired! I walked away and took G with me. I went back to my original Ped's Dr and told him what I did. He did give G better pain medication but was at a loss what to do. That is when I started researching and calling Dr.'s. Our next journey takes us to Pittsburgh! I really have nothing bad to say about them. We went there 2 times and that Dr referred us to Philly! Now this is when all the fun ( being sarcastic here ) begins. I can say that this hospital fine tuned my skills at how I am today. I believed in them at first, but things were done, hey we are human and everyone is allowed a mistake. But it goes deeper then that. I really do wish I could name names but legally I can't. I will say I met the most amazing people and kids there. I'll take you through our " Philly" experience next time.

at the start

So like any story or life experience one must start at the beginning. Ours starts just after my daughter turned 5. We had put up the Christmas tree that day. I was going through a divorce and I worked the 3rd shift. My soon to be ex was working the 2nd shift, we did this to avoid each other. I was taking the kids to the sitter, I lived in a duplex and she lived on the other half of the house. It worked good as I could put the kids to sleep in there own bed and just open the door upstairs so the sitter could get in if she heard the kids and there father would be home in a hour. As I was getting my kids in there PJ's I ran my hand down my daughter's arm. A sign of affection and love, I felt a weird ridge. I asked her if her arm hurt and she said No. I am puzzled and think great she broke her arm and I was trying to think how she could of as she had not fallen or anything. I went to the sitter and asked her to feel G's arm. She said Oh yeah that feels bad. So I called work, said I'll be late I think my daughter broke her arm. Off to the hospital we go. When we got there I told the ER nurse that I thought her arm was broke even though she kept moving it and saying No mommy it's fine. They took her in immediately. They took 2 x-rays, one from hand to elbow and one from elbow to shoulder. After a short period of time the Dr came in and said we need to take another x-ray. We need to take one of her chest. Now I'm worried. I asked why and he said just to rule something out. I said fine. It wasn't 5 minutes later when he came back in and said can I talk to you alone. Gabbie said NO, I want to know too. She was always like that. I never hide things from the kids and I never before lied to them. I said she can stay it is her x-ray after all. He put up the x-ray on the board and turned on the light. I was stunned and fear washed over me. Gabbie goes what's that? Referring to the large black mass in her chest the size of a softball. The Dr goes it's a tumor. My world feel apart. I just started to cry. Gabbie goes it's OK mom... but it wasn't. I feared cancer. I asked is it cancer? The Dr goes I don't know. It has to be biopsied. HUH? I couldn't believe what I was hearing. I was like OK now? NO we can't do it here we need to send you to a special hospital that deals with this stuff. I still didn't know what this stuff was. All I knew was there was this huge fucking tumor in my daughter's chest right next to her heart. I wanted it out now. He called in her ped. Dr. He came even though it was at that point after 11pm. I will always remember he came. He let me cry. He cried. Gabbie even then had a way. She got into your heart. He called A hospital in Syracuse. I was told to take her there in 2 days. 2 days is a long time when you know there is something in your kids chest against her heart. I packed my clothes, what I thought would be enough. I took her. Mind you all thoughts of Christmas were gone. 3 weeks before Christmas and I was checking into a hospital. I prayed it wasn't cancer. The things those Dr's did to her I'll never forget. She went into surgery so brave. The Dr came out after a few hours. She said I was able to remove 99% of the tumor. It was a neurofibroma. I said is that cancer? She said no. It's Neurofibromatosis 1. I was struck dumb. What is that? She explained quickly that they were benign tumors. It was genetic. My daughter came out of surgery different. She was changed. She punched a nurse in the face and called her father an asshole. She also called the Dr one. She didn't recover like they said she would. She stopped fighting them when they came to draw blood. She had a tube in her chest. She wouldn't eat. She lost weight. I took to sleeping in a cot pushed up to her bed. Nobody could get to her without me knowing. I wake up and she is staring at me. I smiled and said how do you feel. I will never forget what she said to me. She said I am going to have to go someday and you will be sad. I got so scared at that point. I asked her what she was talking about. She goes the man said so. What man? I asked. She goes the man in white. I thought OK some idiot Dr came in while I was asleep but how the hell did he get to her without me knowing? I stormed out to the nurses desk. I said what Dr came in her room and scared her? The nurse said nobody has been in there. I came in the door about 3 hours ago and you both were sleeping so I closed the door so you guys could sleep. Nobody went in. I was scared as hell then. I went back and G said I am sorry mommy. I don't want you to be sad. I don't want to go but I will have to someday. I just nodded. Days went by, then a week, then another and I ran out of clothes. I called my Dad. Like I always did. I said just bring me a few pair of your sweats and a few t-shirts. This is something I always did when I was young. I'd wear my Dad's shirt if I was afraid. He knew it and never said a word. He brought me what I asked for and he bought me undies! I told Dad what Gabbie said. I was crying so hard and Dad just held me. I knew it he said. My Dad and G had this huge bond. A special bond. More then grandpa and granddaughter bond. She always wanted my Dad. She had to visit him everyday. That day my Dad said chin up and lets fight. First we get her home. She needs to go home. Christmas is in a week. So that what I worked at. 2 days before Christmas I told them I am going home and taking her with me. We will come back after Christmas if we have to but I'm taking her home. And I did. We sang all the way home. Christmas songs of course. We had a big Christmas deal. And yes we had to go back after about a week. That is when her arm started to hurt. That is another nightmare visit at hospital #1. It is amazing that I went from scared about the tumor in her chest, to sigh they got almost all of it out, to thrown in a pit of shit. I stand for my daughter. I stand for all kids with tumors. I'll stand with you if you need me too. I made a promise, I intend to keep it. I will never stop fighting. No matter what. I will start on the next steps another time. Opening my heart and sharing what is in it is hard. It hurts, but it needs to come out. The story needs to be told. The lies that Dr.'s say need to be told. I won't mention them by name but I will state the hospitals. I need people to understand that the way I am is because of what I've had to do, what I've seen Dr.'s do. I hope by telling this that others will listen and learn. Oh and for the record I never made it to work that night or for a month after. My boss was great about it and they took a collection for G. I worked at a truck stop and I'm here to say that not all truckers are assholes. Those men are good. They bought her toys and candy. They gave me hugs and slipped extra money to me. They would hide it under there plate or there napkin as I wouldn't take anything they offered me. I will forever be grateful to them for there help.

Gleevec is it a cure?

So The big hype now is Gleevec. I will admit I wasn't even going to look into it as we have been "there" way to many times and have way to many fucking t-shirts. Yet I did look into, searched it, talked to many Dr.'s about it and jumped an adult Oncologist about it. I did all my homework and it all came back to give it a try. I jumped through hoops to get it and I got it for G. I didn't want to get my hopes up as like I said we have been down the road to many times. I got my hopes up... damn it. I know how this will end, me curled in a fetal ball, crying hysterically on my bathroom floor, throwing up. Yes I am human and I cry. I know a lot of people consider me " hard", nothing could be further from the truth. Yes I am strong, but when I am alone or had 1 drink to many I am more open and honest. So anyway back to the Gleevec. It costs $3,700. I am not shitting! Thankfully my insurance paid for it. But it got me thinking about those people who don't have insurance and could never be able to afford this. It pissed me off. Those damned drug makers are assholes. I guess only the Rich gets to live. Oh and because I am on a rant.. Hey America how do you like your new president? How dare anyone tell my Dr how they can treat MY kid. How would those idiots know how too? I think they should leave medical care to those people who went to school for 10+ years. My Dr earned the right to treat my kid. Bunch of political assholes. I don't give a shit who you are but if you screw with one of my kids... watch the hell out. I'll have you gutted before you know what hit you. I keep getting off track... Gleevec. G seems to be handling it well. We go tomorrow and get labs done. 5 days on the stuff so we will see how her counts look. I know I shouldn't of gotten my hopes up, I will only get screwed over and then I will be pulling myself out of a pity hole. Thankfully I didn't get G's hopes up. I couldn't stand to see her get crushed again. I'd rather get crushed then her.

My daughter lives in her own world. It must be a real great place as she is always there. I wish I could go there at times. When I first realized she made a make believe world I tried to bring her back out. I tried to bring her back to me. My shrink ( yes I have one.. he tells me I am sane and one hell of a mom ) told me that why would I do that to her. So I let her live in that world. She don't like kids her age as they judge. She prefers small kids or some adults. She hates when people stare at her. If I catch them I normally ask what the fuck there looking at? Have they never seen a child with tumors? I know I am such a bitch but walk a day in my shoes and see how you are at the end of the day.

I guess my plan is to start at the beginning and go from there. I will skip around, I will rant and yes I will swear. I'll tell it like it is. NO child should read this. It's not for kids. It really is for me and a "safe" place to put what it's like to go through this. It's a place where I don't have to worry about watching what I say. Things will get graphic as you see with just some of her MRI's. If you think those are bad you should see the others. I will be posting other pictures of what happened after her belly surgery. I almost lost her... I tried everything after that surgery to bring her back to me and nothing. You know what brought her back? A dog... yes a dog. The therapy dog came into her room jumped on the bed ( there not supposed too ) and licked her hand. She came back and that dog stayed on her bed for half an hour. He came back a day later and did the same thing. The dog still has his job don't worry. The nurses looked the other way or some came and told him what a good dog he was. He was a good dog. He knew his job well. So when she went for chest and arm surgery she was in PICU... no dogs allowed... I got her into a room so she could have her dog visitors. She was also able to kick me in the ass. No really she kicked my ass. She wanted the vent off, and kept kicking me till they took it out. If a kid can kick there parents ass, they don't need a vent. I hope to teach someone something. Maybe compassion or maybe just let someone know there not alone. I know I feel alone at times and it sucks. I am so grateful for those who got behind my wall... even though one of them sneaked there but I am very grateful he did. He knows who he is the sneaky turd ( HUG) and now he is stuck with me! I can count on one hand who I can go to, the sad thing is they are not related to me at all, except they are in my heart. OH and yes I will call the idiot who lives in my home that. He is an ass, he only wants me so he isn't alone. I stay for G.. She loves him...well I guess someone has too. But oh what a day it will be if anything happens to her. I've said before I would do anything for my kids and looks like I am.