September - November

This post was a work in progress for a long time. I decided to just make one long one from the months of september through the end of november. I did not forget, i just couldnt keep up with everything going on. Its hard to follow, cause ive been writing this post for months so its kinda jumpy. You'll see what i mean, enjoy the chaos!!!

Sadie is done with yet another phase. The last I posted, she was at the very beginning of the phase she just finished. At the start of this phase, I knew it would be bad, but when it becomes reality, no previous mental preparation will ever be enough to deal with the unknown. This phase contained cytoxin and ara-c. They are by far the two worst chemo drugs in her treatment plan. The last time she had these chemos was when she fell and a simple scrape on her knee turned into a staph infection within 12 hours of the initial fall. We were stuck in the hospital for nine days over something so small and common amongst other children her age. Ara-c causes fevers, whether it be due to the chemo itself or the fact that it lowers counts so drastically that your body has absolutly no ability to fight off anything. If a fever occurs, its to the hospital we go, and the hospital we will stay. When ara-c is given, its over a four day span, therefore, sadie comes home with her port accessed, and chemo is administered at home daily. This cycle then repeats depending on how many consecutive weeks the drug is to be given. I HATE BEING THE ONE TO INJECT MY DAUGHTERS VEINS WITH POISON. The thought of it sickens me. Sadies counts are awful, and have been for weeks. She has no immune system what-so-ever, and her bone marrow is not producing red blood cells or platelets in addition to not producing whites. Within the past nine days, she has recieved 3 blood transfusions and 5 platelet transfusions. She is actually recieving platelets as we speak, and is in need for yet another blood transfusion as well. Her platelet count was at a 5 today. Its the lowest it has ever been. She is covered in petechia spots, just touching her at this point will cause bleeding and bruising. An IGG test was done on sadie recently. This test is done to measure the immunoglobulins, AKA antibodies, in a persons blood. These antibodies respond to bacteria, viruses, even cancer cells, by attaching themselves to the foreign substance/cell and destroying it. Normal, or should I say,preferred range of IGG in the blood of a child, is between 400-1000. Sadies was at a 200. So.......in addition to her white count and ANC being at nothing, her IGG was low too. There is such a drug to help the white count recover, but since sadies cancer is a white cell cancer, she can not recieve it. However, she was given an IVIG. This is a transfusion of IGG, to help boost the immune system in that aspect.

Aside from shitty counts and endless transfusions, I cant complain. She did have a pretty bad fall this month. She fell getting out of the bath tub at mikes house, and hit the side of her face on the toilet. It was pretty bad, but things could always be worse. We could be in the hospital a lot more than what we have been throughout this phase. I am extremely grateful that we havent been. Sadie is beginning to despise the hospital, so treatment days are nightmares. Its a battle with her all day long, yet i do not in any way blame her. I want to cry myself every time we walk into that hospital.

Sadie turned four on September 21st, Happy birthday my beautiful baby girl. She managed to stay out of the hospital on her bday, but we were there the very next morning for platelets. I didn't tell her it was her bday until I knew for sure she wasn't going into the hospital that day. She had an okay day for the most part, but you could tell she felt like shit. She had a rough time opening her presents cause she was so exhausted.

Mine and mikes divorce was finalized on the 19th of september. It was in the works for quit some time, but sadies diagnoses with cancer stalled things a bit. I have a lot to say about this. I will always love mike because his blood runs through my childs veins. Like anyone, he is a good man when he wants to be, but we were definately not good for each other. It took me a long time to come to terms with this, but it's truly best for all involved. I never wanted to get married and divorced. I only wanted to do it once and make it count, but I guess that wasn't in the cards for us. For better or worse doesn't mean you can treat someone like shit and they have to stay just because they said that vow. I got the best part of him, and she is my world. Because of her, I have no regrets concerning him and I. To mike, and anyone else who might think it, I am not a neglectful mother. Your opinions of me are false and I do not wish to hear them. Get your facts straight before you judge me, better yet, walk in my shoes before you judge me. I love my daughter and I dont have to prove that to anyone but her. I live in misery everyday worrying about her health. Everything I do is for her so how dare anyone try to tell me otherwise. As if I/we dont have enough shit to deal with. For the record, my personal relationships have nothing to do with me as a mother. You think im a bitch, but maybe you make me that way because you are always riding my ass. Would you want to talk to or be around someone that constantly brings you down?? I cant even shit without someone knowing about it and criticizing every aspect of it. At the end of the day, regardless of how rude you are to me, I still love you. Can those of you that judge me say the same?? Re-evaluate yourselves because your the true problem, not I. Some people are only happy when they are manipulating others, I pray for those of you that do this. I have suffered a lot of heartache with sadie, I will not allow myself to suffer about anything or anyone else. Call me a selfish bitch for it if you'd like, but remember that what you give is what you get. To these people, You know who you are.

Okay, so I have tried to finish this post several times now. Every time I get about done, something happens. Upon trying to finish the first time, Sadie got the dreaded fever. Luckily we were already in clinic when it happened, so we were able to go straight up to the fourth floor.Breaking the news to sadie was not fun.SHE WAS UPSET!!!!! The hospital is miserable to begin with, but when you add the fact that mike and I are not getting along, it makes it torturous. We couldnt stay in the same house together, much less the same room. Needless to say, I have been leaving at night to avoid as much conflict as possible. Im with her when she wakes up, and I leave at bedtime so she can spend time with mike without any tension in the room. Little did I know, this only makes people talk even more about how neglectful I am. I can't wait till she gets to come home.

I had a huge scare with Sadie today. The docs knowingly let her blood get too low. Were talkin in the 5's, that's deadly. Blood was ordered for hours, but no one seemed to care to get it going. Sadie fell asleep, and she wouldn't wake up. In the mean time, her blood pressure dropped to 60/38. The nurse forcibly woke her up and doctors and nurses swarmed her room in a panic. They dropped the head of her bed down to keep the blood flowing to her brain and gave her a bolus, which is basically an intense hit of fluids through the body to raise the blood pressure. Normally Sadie would freak out with people standing over her like that, but she didn't even flinch. I freaked the fuck out and started screaming at everyone in my path to get the fuckin blood NOW!! I was livid!!! I looked at the resident and told him to walk his lazy ass down to the blood bank and get the fuckin blood himself. He took off running. I made it known to the whole staff that day, that something like that will never happen again or I would kill every single one of them. It was a god send that she ran a fever the night before and was admitted to the hospital. I don't like to think about what could have happened if she was at home with me when that went down. I can't talk about this anymore. It haunts my thoughts.

After two several day hospital stays, Sadie is ready to start her next phase. This phase consists of escalating doses of methotrexate, peg, vincristine, and spinals. All chemos, but not as count lowering as the last phase. No unusual complaints about this phase so far, she is almost done with it. Weve had a few delays in treatment due to insufficient counts, and a few transfusions, but anything is better than the shit she got the last phase. Lots of throw ups this round, but shes had lots of good times too. She throughly enjoyed halloween. She got a Jessie costume (from toy story) for her bday, and has practically lived in it since, so that's what she was for halloween. I'm so glad she was able to go out this year. Maw and dad dressed up with her, it was hilarious!!

The fashion show was amazing!!! She was throwing up the day before, so I was nervous about her being able to make it, but she did and it was fucking awesome!!! The day show was a little rough, but she finished the evening show so proud and accomplished. I cried like a baby seeing her cute ass up there. She did make up, and the whole works. Her initial set up on stage was with the girls, but she wanted to be with her boyfriend Dakota, so they switched it just for her. She looked like a princess walking out with all the boys. Thank god for Dakota, he was so good with her all day. I am definitely setting them up in the future. He has the same cancer as Sadie, except his came back so he is restarting his three years all over again. God forbid anything happen to him. Once the cancer comes back, prognosis drops drastically and chemo is soooooooo intense. It's a bad deal. Thank you mom for staying back stage with sadie at the fashion show so I could watch. I love you so much. She wouldn't have done it without you with her. It was a great day for Sadie. She stayed in a hotel, got lots of presents, she went swimming, got pampered, and had a fun day with her friends. It was so exhausting for her and the adults, but it was worth the memories and experience we all gained. Everything was so fancy and extravagant. At one point I made a huge deal out of this chandelier I saw. It was so beautiful!! My only response was "I'm from Jefferson county". That explained the whole thing I'm sure.

Benefit for Sadie put on by Judy Barlow was in October. It was a huge success. I had a wonderful time but would like to apologize to those of you that may have seen me a little buzzed. I would like to thank my bartender brandy for that one. Aunt barb knows what I'm talkin about. I'm sure she would like to thank you too brandy. I will get you back for that one. Anyways thank you Judy, Mandy, mom, guests, everyone. I have an amazing support team. Judy, you are one of a kind!! You have helped me and Sadie girl so much. I love you, thank you, thank you, thank you. I am in debt to you. Even after the benefit, you and your family just keep helping. I am still in awe at your hospitality. To all of my wonderful friends, it was so good to see you. Thank you for coming. I wish it was under better circumstances, but you are all there when it counts and thats what makes true friends.

I don't know how else to say this, so I'm just gonna say it. Raven and James died. I was talking to james's mom daily, so I knew it was coming but it's fucking awful. She is so messed up right now and I don't know what to say, so I just listen. She wanted me to go to the funeral, but I couldn't. She is living my worst fear. I couldn't see her see her baby like that, and I couldn't see her baby like that. It sounds selfish I know, but it would have literally fucked my world up. Talking to her is hard enough. She would have done it for me, and it kills me I couldn't. In addition to this, Maggie is in the bone marrow unit, skylar is being sent to st. Judes cause they can't find a donor match for him, and kaytlen relapsed only a few months after her treatment was over. Her parents noticed paralysis in her face and took her in for a scan. She has a brain tumor. They have to directly access her central nervous system with chemo so they have to put a port in her head. They were the first family we were introduced to when Sadie was diagnosed. I get so discouraged. I have yet to witness a success story. Pray that Sadie is the success story. I don't wish to talk anymore about this. Those children are family. All of us are family. We feel the hurt and loss of each others children and it's a pain I can not express. It's an unspoken bond and connection between us all.

So after this phase Sadie repeats the cytoxin/arac phase that she just finished a few months prior. It's the last phase before maintenance. It's the last of the intense chemo. It's the last but the most intense, just in time for the height of cold and flu season. I am terrified. I have nightmares about it. She has to push through it okay. I'm a fucking wreck. Im worried about that, I'm worried about her treatment being delayed. It's already been delayed once before this phase and twice during it. That's not good. I'm worried about the cancer coming back, I'm worried about her getting sick. I'm worried about all these transfusions and her iron levels. I'm worried about her glucose levels, shes on the verge of becoming diabetic. I'm worried about her blood pressure being low, I'm worried about her blood getting low and not catching it in time, I'm worried about everything. To top it off, mike and I are at each others throats, and being away from Sadie every other night is pure torture. I can't take it. My mind is so bothered and my health is no better. I recently had to have a surgery, and after four weeks, I still feel a little pain. Between that and stress, I'm not healthy right now. I feel run down and broken in every way possible.

Happy late thanksgiving to everyone. Hope your holiday was good. Sadie was so excited about the big bird. She bugged me for days about cooking it. Of course I had to lie to her and tell her it was a big chicken or she wouldn't have touched it. She is so picky. So.... Thanksgiving day finally came around, and she woke up with a fever. Go figure. Went to the ER, and got some cultures drawn but she didn't have to be admitted cause her ANC was above a 500 so it wasn't a fever due to counts, it was just a side affect of the chemo. On the other hand, she did need a blood transfusion, so she didn't get home till about 9pm. I left at about 4:30 to go home and make the turkey. I was giving her a thanksgiving no matter what. It was perfect timing, her and mike walked in right as the turkey got done. She was so excited. She loved the big turkey chicken. It turned out to be an alright day for her after all.