Delayed Intensification

Yet another post that is long overdue, so there is lots of catching up to be done since the last time I have written. Okay, so let's back up. In my last post, I talked of Sadie going in to get counts on a Wednesday I believe, and they came back somewhat decent. Well.....by the time sunday came around, she was in need for a transfusion. Within a days time, from saturday morning to saturday night, sadie's slight bruising turned into rapid, deep bruising, all over her body. She started to present with bleeding under the skin as well, so I knew it was time to go. We called the doc at about midnight, and she told us to come in first thing in the morn on Sunday. Since clinic was closed, we had to go through the ER, which I hate, because those people know nothing about leukemia protocol and accessing ports. First time in the ER at a previous visit, they missed her port all together, so I despise these people. Common sense says, if you don't know what your doing, then don't do it. I told them of my previous experience at this visit, and told them to get me someone that for sure, without a doubt, knew what they were doing, cause there was no room for error this time. I had this nurse so nervous, that she was literally shaking so bad that's it's a wonder she was even able to access her. You could see the sigh of relief on her face when she got a blood return on the line. Sadie's CBC showed that her platelets were at a 28, and her white count and ANC had dropped drastically since the finger poke Wednesday. She received her transfusion, and due to her ANC being so low, she wasn't able to attend her surprise birthday party on mikes side of the family. That was her last chance to see them for a long time to come. Thank god she didn't know about the party, but I was still so devastated for her. Cancer fucking sucks!!!!

The following Sunday, I was seen in the hospital, and referred to a specialist, because the ER doc was afraid to treat me with all the other health issues I have going on. I still haven't done this, for there is no time. They flooded me with fluids, among other things, and Sadie did not like that. We sent her a pic of me with my iv pole, and this saddened her greatly. I thought that it would make her feel normal that mom had to do the same stuff, but it didn't. She doesn't like people messin with her momma. I've had my fair share of surgeries and hospitals, so I can sympathize with her greatly, although nothing will ever compare to what she goes through. I was fortunate enough to go in the OR with her when her port was being surgically implanted, but that was only until she fell asleep. After that I obviously had to leave, but I was so grateful they allowed me to suit up and stay with her until then. They never allow this, for it is a sterile environment, but I'm a pusher, and it wasn't gonna be any other way. She would see my face last before she went out, and my face first when she woke up, and that was the only option. I can not explain the feeling i felt when i had to walk away from her that day and leave her on that operating table knowing what they were putting in her, and why. I will never forget it, and I don't want to!! It has changed me along with so many other things, and this whole experience has created a bond between her and I that only the heavens could comprehend. Naturally, parents love their children unconditionally, but they will NEVER understand how deep this runs until their child's life is threatened to be taken from them. To all of you, I pray this never happens.

So anyways, Sadie was due to start her next phase of treatment on August 15th. I was skeptical about this, because her counts were so low and she had to make counts in order to start. A CBC was ran, and........she barely made counts. Phase 4 was started off with a spinal, and three chemo doses in one day. I still cant bring myself to sit in on the spinals, but i will stay with her till shes asleep. They call it "asleep", but its anything but. Her eyes never close. They remain open and they dart around so fast that you cant keep up with them. Since there is no blinking, tears stream from her eyes and soak her face. It is too much for any mother to see, yet i suck it up and just do it until i know shes out. I leave that procedure room every time with a hole in my heart and a sadness I can not put into words. She is back on the steroids, so she is very moody, and mean. They change her personality so much. Appetite is in full swing, so her days are spent eating. She will not gain weight with the steroids like she did during induction because she is on a week then off, then back on again, and off. So...shes hungry, but her stomach hurts because of the chemo, yet she keeps on truckin.

I have feared this phase for a long time, it is a whole new nightmare for me. I'm going to go into this phase, and I will try to explain it the best I can, so stay with me. The name of this phase is called delayed intensification. Hence the name, it's intense. Every chemo drug in every phase up to this point is combined and given throughout this phase, plus one. The new one she is receiving is called doxorubicin. Dox is a cell-cycle specific drug meaning it can only affect cells that are dividing. A cell-cycle-non specific drug, can only affect cells when they are at rest. Dox is typically given for solid tumor cancers, which sadies is not, but since it affects rapid dividing cells, blood cells are the first to be affected. Since Sadie has a blood cancer, this drug works for her type as well. In addition to attacking blood cells, it attacks the mouth, the hair follicles, the stomach, and the bowel since all contain these rapid dividing cells. This means, mouth sores, low counts, no immune system, hair loss, vomiting, and as Sadie calls it, "bad poopies". The side effect of this med is as all the rest, except it carries a high rate of heart defects. A person can only receive a certain amount of this med throughout their lifetime because it is that toxic. Adults and children have had anything from murmurs, to strokes, to complete heart failure, and everything in between as a result of this chemo drug. This is where my fear sets in. Because of this potential effect, an EKG and an ECO is to be done before the drug is even given to get a baseline of her heart. Follow up scans are given during and for her lifetime after the drug to detect any changes from her initial baseline. This was never done. The very doctor that told me it had to be done, forgot to do it before that first dose was given, and now claims that it's not necessary. Why??......because she forgot and is now covering her ass. I can not tell u how pissed off I am at her negligence. Point being, I absolutely hate this drug. In addition to the dox, she will receive 41 other doses of chemo throughout this 54 day phase and most all are count lowering. I don't think people fully comprehend that a common cold could take my child's life because she has nothing to fight it. With cold and flu season approaching, I am stressed to the max. I have to take her for treatments, which means, I have to take her to one of the dirtiest places there is. A children's hospital!!

I requested a ferritin test on Sadie because of all of the blood transfusions she's had. Ferritin is a ubiquitous intracellular protein that stores iron and releases it. It acts as a buffer so to speak because its supposed to protect your body against iron deficiency and iron overload. High levels of iron are fatal and/or cause permanent organ damage. This is especially true in children, and that is why children's vitamins contain little to no iron. When blood is transfused, iron is transfused, and it builds up in the body. The ferritin which is supposed to regulate it gets overloaded and can't do it's job. This is a risk you take with blood transfusions, but they have to be given, and Sadie has already needed to many. Normal ferritin levels are between 10-143. Sadies was at a 980. When ferritin levels reach 1000 and stay there, it becomes toxic. Therapy will then be given to extract it out, but it's a slow process and in the meantime, it's doing continued damage to the body. I requested a retest on her this coming Monday, and because of her ferritin levels, she cannot be transfused unless she reaches a hemoglobin level of a 7 or below, which is extremely low. Blood transfusions are inevitable, and with her not even being a quarter of the way through this, I fear the repercussions of these transfusions at any given time. It's a lose-lose situation. Without them she can't survive, with them comes huge risks.

To lighten the mood, Sadie was elected to be a model in a fashion show. It is an annual event put on by the foundation friends of kids with cancer. They are one of the leading foundations for children's cancer. Only 20-25 children get elected each year out of all the major children's hospitals, and sadies hospital staff elected her. How fucking cool is that??? It is so her!! It takes place at the ritz-carton on nov 4th. They put her up in a hotel and buy her all new outfits and shoes especially tailored to her size. She is designated an actual model to rehearse with that will teach her how to model and do her make-up. In addition to that, they spend $300 dollars on each child in presents that they will open during there stay at the hotel. She will perform in two shows, morning and night, and all of her needs will be catered to. I can not tell you how perfect this is for her. My only problem is this: November is flu season, and upon speaking to the founder of the foundation, she said that the shows last year maxed out at 700 people each show. That's a whole lotta germs!!!!!!! On the plus side, Sadie will be in her next phase of treatment which isn't so count lowering, so she will have a slight immune system. She will not be in direct contact with the audience, cause she will be on a runway, but shit is airborne, and with that many people, someone is bound to have some funk. It's a wonderful experience for her to have and I know she would throughly enjoy it, but is it worth the risk??? Im at war with myself in my own mind everyday and I hate it.

Recent Sadie sayings: Sadie got this really cool wooden, underwater themed, croquet set as one of her gifts from the surprise party she missed. She loves Alice in wonderland, and wanted that game because of that movie. When nanaw brought all of her gifts over, and she opened it, she couldn't pronounce croquet, so she said nanaw, I want to play crack hoe. I said Sadie girl nanaw is really good at playing crack hoe. She didn't understand what was so funny.

She thinks chocolate is called cocoa brown, and she knows I'm an addict for chocolate, so she's always asking if I want some cocoa brown. Of course mike chimes in with, "so mom, you like the cocoa brown"?

Sadie loves chicken, she wont stray from it, so to get her to eat other meat, we have to lie and call it brown chicken. All day, all I hear is mom, I want some chicken brown brown. Between the crack hoes, the cocoa brown and the chicken brown brown, mike swears people are gonna think were racist. Our old neighbor was a colored girl, and Sadie called her cocoa. I was so embarrassed. Just so happens, her brown dogs name was cocoa. Ever since then, all colored people and anything brown is cocoa to her. I can deal with the cocoa comments, cause I've had to in the past, but I hope to god she never says crack hoe in public. How could i cover that one up?? No one would ever believe me that she was really talking about croquet. For the record, I teach her to love all of gods creations regardless of there situation or race.

To Stephanie, Jenna, and Mistie, I love you girls so much, and i hope you got your blog fix......I won't wait so long next time. Thank you for your prayers, ours are with you and your families as well.