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.

Ya can't fix stupid

This post is long overdue. I haven't posted since we got out of the hospital. Sadie finally cleared her chemo on mon morning. Exactly a week later!!! It was a long stay. Her kidney function returned to it's baseline, but that doesn't mean that long term damage was not done. I pray this is not the case. Effects of these drugs can be immediate or years down the line. Everything's a waiting game. The day before we left, Sade woke up throwing up blood. I panicked and obviously asked to see a doctor. 2 1/2 hours later, more blood and still no doc. I was pissed. I went to the nurses station and said "doctor, now". The doc came, but with her counts falling, they would not do a scope, so it was assumed that it was a sore in her throat. I wanted to know for sure, but that was not an option. At this point, her lips were raw and swollen due to mouth sores from the chemo, so sores in the throat were likely. Aside from this, she was struggling with the fever, and her blood was so low that she was sleeping 14+ hours a day. She would not get out of bed. Her depression factor alone of being in there so long was tiring enough. I have seen Sadie bad before, but it caught me off guard this time, cause she went down hill so fast. She would not eat or drink, and couldn't because of the sores, so taking her off the iv fluids scared me even more. The morning she cleared, her white count was at a 0.35, so she had no immune system. She wound up receiving a blood transfusion, and after the transfusion, it was decided that she could go home under the assumption that she would do better in her own environment. She had to return if she didn't eat or drink, or have adequate urine output. We got home, and her appetite did return, but her mouth hurt so bad that she couldn't eat. She was getting so aggravated by this, and she is such a picky eater, so pudding, jello, mashed potatos, or anything else soft like that, she refuses to touch. When she finally did eat, she coughed up a hunk of skin with blood on it, comparable to the consistency of chicken fat. I called the doc, and she said that it was a part of a mouth/throat sore, that broke off. Obviously it was from the throat if she coughed it up, which explains the source of blood in the vomit earlier that week. After this episode, she went back to not eating cause that wound was opened again. Her mouth still hurts today, but consuming food is getting easier as the days pass.
I took Sadie for counts yesterday at the local lab we always go to, and unfortunately, our regular phlebotomist Kelly, was on vacation. Hope everyone is ready for this, cause I'm about to get all fired up. We sit down to have the finger poke, and I tell the lady that the last time we were here, Sadie had to have two, cause her hand was too cold and it wouldn't drain, so I requested a disposable hand warmer to heat the blood. She says oh, were not doing that today, were gonna access the vein. I said um, I'm sorry but no were not. It is written in her orders that a finger poke is done at all times and that she is not to have her vein accessed. This fucking bitch kept insisting that she was accessing her vein, even as my daughter is crying that no she's not. I told her that if she was not gonna do it the way protocol says to do it then she needs to get me someone that can. She huffed and puffed as she left the room, and when she returned, she slammed some shit on the counter and says, I have been doing this for 20 years, and u are doin more harm to her than good. I said look, her own children's hospital will not even take her blood that way, and for all you or I know, her platelets could be low, and u want to wrap a truncate around her arm and poke her vein which could cause severe bleeding and bruising under her skin. Not to mention, it's traumatizing and hurts like hell to a three year old. Shut the fuck up and do it, and by the way, u obviously don't know what your talking about u stupid cunt. To top it off, she used an adult sized finger needle, when common sense says to use the child size. I did not see this till after it happened. What was supposed to be a retractable needle, didn't retract out of sadies finger cause the needle was so big. Sadie was so upset. After it was all over, sade asked for a sticker, and the bitch says, we don't have any. Bulshit, Sadie donates her own stickers to that place so I know they have some. Sure enough, one of the other ladies brought some in. I left there and called quest headquarters and put in a request to speak with the head super and the branch supervisor. They called today, and I let them have it. As if Sadie doesn't already go through enough. That's not even half of it, but I will stop there cause I get so pissed talking about it. Ironically, sadies cousin dray had to have blood work that same day, so I rode with my sis there. He was in a different room getting his done about the same time. Wish to god my sis would have been in the room with me. Haha, I can only imagine!!! That woman would not have stood a chance. Shawnnas a mean bitch. Sorry sis, I love u so much, but u are. So after counts are drawn locally, they are faxed to sadies hospital, and I receive a call from a nurse with the status. We went at 10:30am, and at 3:30pm, still no call. From the time the blood is taken, the lab has three hours to report the counts. Three hours was passed, so I called Glennon, and the nurse says oh, I lost them. I said what do u mean u lost them. She said, sorry but I lost them, do u need them?? Well hell yeah I need them, when we left, she had no immune system and low platelets. As sadies nurse, she needed them too. How was anyone to know if she needed a transfusion without them?? The nurse never found them, but eventually called to have another copy faxed. I swear, you can't fix stupid!!!! Today was just a bad day to get counts.
On a happier note, Sadie seems to be doing better. Her whites came up a little, but her plates are low. She has minor bruising goin on, but she's not ready to transfuse. Her mouth still hurts, but she is eating and drinking now. We took her to see the smurf movie tonight, assuming it wouldnt be crowded, and luckily it wasn't. If it was we could not have stayed. That was her first outing in public like that since d day, and it's so scary taking her out, but she is so miserable sitting at home day after day after day. She really wanted to see it, and She had a really good time. Everytime someone would get too close (literally 5 yards away)she would put her hand up and yell NO!!!! So sad she has to be that cautious, but glad she knows how to be, even if their a mile away. You should have seen me disinfecting the theater chairs and laying a towel out on hers for her to sit on. People must think I'm crazy, but I dare them to say it to my face. I have so much rage and anger, that I feel sorry for the one that does.