Not Without Consequence Part 2

It took about a week for Sadie to make acceptable counts to start the second part of this phase and even then, she barely made it. I hate that because it means that she is starting the phase with the bare minimum requirement of all cells needed to make your body survive. Good counts were needed now more than ever. Having the knowledge that I do about this phase and having gone through this phase before, I knew that it was gonna be bad. I have tried to condition myself to hope for the best and expect the worst in hopes that I wouldn’t completely fall apart every time I got shitty news. Bad news is handed to us so often that if I fall apart every time I hear it, I won’t be able to keep a level head and focus on the task at hand. The task at hand being "how do I keep my daughter alive and happy?" Happiness is key. I have learned the meaning of quality of life over quantity. Sadie has to be happy; she has to look forward to life. If she doesn’t, she won’t fight. If she doesn’t fight, we lose. 

A spinal tap, IT methotrexate, Cytoxin, 6mp, and Ara-c start off the first DAY of the second half of this phase.  We are admitted overnight for the Cytoxin as called for in protocol so Sadie’s body can remain properly hydrated before, during, and after this specific chemo drug enters her blood stream.  Welcome to the beginning of fucking hell!!!! I HATE THIS PHASE!!!!!! I cannot seem to stress that enough so I’m probably gonna keep saying it.  After our 24 hour hold, we are released.  Before doing so, the pharmacy is notified that Sadie is going home with her port accessed and to send all chemo drugs and necessary port maintaining equipment to her house.  She will be getting Ara-C at home for 3 more days through her port.  After that is set up, the nurse comes in with release papers and disconnects Sadie’s bag of fluids.  Her line has to be flushed with saline and then hep- locked every 24 hours, and/or every time something (meds/fluids) is pushed through it so that the line will stay open to receive the chemo.  PROBLEM, the nurse can’t get it to flush!!  Instead of resolving the problem, she sends us home anyways.  

5:00pm. we are home now and it’s time to administer chemo.  I get everything ready, clean her line, hook up her flush, say a prayer that it’s gonna work, and…………….it doesn’t.  I fuck with it for a while, and still nothing. The port would flush but not return.  This is what I mean and why it’s important:  when a port or vein is accessed, there has to be a blood return.  For example, when Sadie’s port is accessed, it gets a few mls of saline pushed through and then the syringe is pulled back on to make sure there is a blood return before administering anything.  Without a return, it’s not a definite that whatever you are injecting into that line is going into a vein.  If it’s not in a vein it’s spilling into your body through other means and that can be extremely dangerous when you’re dealing with chemo drugs.  So, I call the home nurse and can’t get ahold of her. Finally, hours later, she gets back to me and says she can’t make it out to us for another few hours.  FUCK!!!  Knowing that the port needle is no good, I de-access Sadie and wait for jen.

10:00pm. Nurse jen finally shows up.  We break it to Sadie that we have to re-access her port.  Let me remind you how devastating this is to that little girl.  Her port needle is huge!!!  It’s thick and long and it just looks mean!!! Like any needle, it hurts like hell.  She shakes and cries at the mere thought of it, but it’s unavoidable.  She has to receive chemo.  We restrain her, get the needle in, hook up the flush, and…….no return!!!!!  By law, jen cannot leave a needle in a port that she accessed without a return so it has to come out.  I look at Sadie wondering if she knows what I know.  What I know is this:  Sadie has to get this chemo, she is now 6 hours late receiving it, she has no return on her line, that needle has to come out and she will have to be accessed again.  I walk away to collect my thoughts. I go to the garage, scream, punch the wall, smoke a cigarette, and say a prayer.  I return to the couch where Sadie is sitting and explain to her what is happening.  I know that we have one more needle left, one more shot at home, or it’s a trip to the ER.  I give Sadie the option.  Do you want Jen to try it one more time, or do you want to go to the ER? I explain to her that if Jen doesn’t get a return, it has to come out again and we will have to go to the ER anyways.  Sadie thinks for a moment and says “let’s try again”.  The needle comes out and the skin above the port is already bruised and raw.  We prep her for another access, hold her down, put the needle in and………..no return.  FUCK OFF!!! YOU HAVE GOT TO BE KIDDING ME!!!!!!!!!!  Jen takes the needle out.  The room is silent.  I grab the phone, call the on call oncologist to notify the ER that we are coming in, and then I call 4 north (the cancer floor).  I asked to speak with the charge nurse and the phone call goes down like this: “I know this situation isn’t personally your fault but it is the fault of one of your co-workers, and since your charge nurse tonight, it’s your lucky day. I am fucking pissed and someone on that floor is gonna hear about it, so my apologies in advance.  We were sent home earlier today knowing that something was wrong with Sadie’s port, knowing that she couldn’t receive chemo without a return, yet they still sent her home!!!!  So already she has been accessed 3 times in a 36 hour period if you count the access from the day before which was supposed to be the needle that stayed in the whole time she was due to receive Ara-c  at home.  So, aside from this fact, she barely has any counts, every time she is accessed she runs the risk of sepsis, especially with low counts, we now have to go to the ER after just being released from the hospital 8 hours ago, its 11:00 at night, she still hasn’t received chemo, she will have to be accessed yet again, and most importantly, I still have to break it to her that this last access didn’t work and that we have to go back in.  Obviously the port was fucked up from the first access the day prior so where in her body did the cytoxin and Ara-c go from the day before cause that was the needle used, that was the needle in her port that she was sent home with, and that needle had no return.   Why in the fuck would anybody in their right mind send us home like that?  Were they too lazy to deal with it? Do they not care? Because of their negligence, my daughter suffers.  She has been picked and poked at enough for the night yet I still have to bring her in to be poked at again after just leaving there this afternoon.  That might not seem like a big deal to you, but it’s a huge deal to me.  I am on my way in, and my little girl is not going to be accessed by an ER nurse who has no clue what he or she is doing.  So…..I will call you when I get there and you better have somebody from the 4^th floor come down and access her ONE MORE TIME, and it better fucking work.  See you in 45.”  I hang up the phone, break it to Sadie, and we leave for the hospital. 

We arrive at the ER, and almost instantly a nurse from 4 north enters our room.  She introduces herself as Andrea and says “You must be Jessica, I believe we spoke on the phone.”  I was very skeptical of her.  I know all the oncology nurses, and I had never seen her before so my first thought was “oh great, a newbie thinks that she’s going to access Sadie’s port”.  Well, you know me, I gotta ask questions.   Who are you?  Where did you go to school?  Do you have kids?  How long have you been an oncology nurse?  Do you know how to access a port?  Are you confident in accessing MY child’s port?  I discovered that Andrea had been a nurse for years and that she used to work at glennon and was just recently back after doing some traveling to other hospitals.  Good education, no kids, confident…… yes.  She was strangely understanding and very sympathetic.  This annoys me tremendously because people really don’t grasp the depths of Sadie’s cancer and how broken this has made all of those involved that truly love her.   I kept telling her how pissed I was and that she couldn’t possibly understand what this is like for she has no children with cancer.  She replied with this: “I have been cancer free for ten years today.  I was diagnosed with the exact same cancer as your daughter in my mid-teens and I remember all of it.”  Silence……………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………………  She looked at Sadie and said “honey, I know this sucks and it’s gonna hurt but it’s gonna be okay.  I know you’re sore so I’m going to be as gentle as possible but let’s do it so we can figure out what’s wrong.”  She put the needle in and again no return.  She suspected what we were suspecting and hoping was the only problem and that was that it was a clot in the port and not the port itself.  Before she left to go back up to the 4^th floor, I apologized for being a complete BITCH, and thanked her for giving me a sense of hope about Sadie’s cancer.  It’s always comforting to meet a cancer survivor, but to meet one that has survived the same cancer as my child’s means a lot to me.  I have only met three, and she was the third.  After she left, the ER doc came in and said they were going to put TPA in her port.  TPA is a bad ass blood thinner.  If there is a clot in the port, it will clear it.  Could take an hour, could take twelve. It depends on the clot.  We don’t have 12 hours, we don’t have 6, we don’t have 3, she needs her chemo now.  If it’s not a clot then it’s her port. If it’s her port then she needs a new one. A new port means major surgery which she cannot have with her counts the way they are. We were told that if the port didn’t clear than she would have to receive her chemo by other means.  By other means meaning IV(vein) or IM (muscle).  Some superficial veins cannot withstand chemo so those drugs go into the muscle.  If it’s going into the muscle, it’s usually in the leg and you literally have to stab the needle into the muscle to penetrate it deep enough.  Either way, Sadie was getting her chemo tonight.  Because TPA is so potent, it is injected into the line very precisely. It can only sit in that line and what’s injected in must come out.  Sadie’s port is in her chest, but the catheter connected to the port follows up through her jugular vein.  TPA sits in the line for a minimum of one hour. After an hour, it’s checked for a blood return.  If there is no return, it is checked every half hour after.  An hour after the TPA sat in Sadie’s line the nurse came in.  She pulled back on the syringe and the blood freely poured from the line.  Its 3:00 in the morning at glennon.  The sounds of victory that came out of our room let everyone know that Sadie’s port was back in business.  They all know her well so relief was on everyone’s face.  I gave Sadie her chemo, and we went home.  What a great start to the second half of this phase and its only day two.  We called Andrea on our way home to tell her the news and to apologize again.  I should not have judged her.  God put me in my place tonight. 

Two days later I had nurse Jen come out and take counts on Sadie.  It was a Saturday so if anything was wrong, it meant back to the ER.  A few hours later she called me with counts. Sadie’s blood was low so back to the ER.  Three days after that, Sadie was due back in clinic for another  spinal, IT methotrexate, and to start the second four day week of ara-c.  Two days after that, Sadie needed blood and platelets so we had to go back to clinic. Two days after that Sadie needed more blood and platelets and since it was so late and we had to go through the ER again, they admitted us to the 4^th floor.  Overnight, Sadie started having blood pressure issues identical to the last time in this phase.  Her blood gets so low that there are not enough RBC’s to carry oxygen to her body.  This combined with the volume of blood in her body, makes it hard to maintain a healthy blood pressure.  More blood fixes it almost instantly. 

Before we were released the next morning, I begged the oncologist on the floor to keep her admitted.  I explained to her that Sadie’s temp had been lingering in the 99’s at home and that her body wasn’t holding these transfusions.  I explained to her that the last time Sadie went through this phase the same thing happened and that she became very sick.  I reminded her that Sadie was severely neutropenic, and that it was only a matter of time before she spiked a fever and had to be admitted anyways.  I also told her that Sadie would be in need of more transfusions.  She looked at me like I was insane. She refused to keep her admitted so I asked her if we could at least take her home accessed so Sadie wasn’t getting a new needle every other day.  She refused that as well.  She sent us home, and that night Sadie spiked a temp and we had to go to the ER.  Since Sadie proved to be neutropenic, she was admitted.  The next morning Sadie needed more blood and platelets.  The doc finally came in and it was the same bitch that sent us home and wouldn’t listen to a damn word I said.  She accused me of falsifying a temperature to get Sadie admitted.  I was fucking livid!!!!!! She made the nurses use the thermometer that I use at home and the hospital thermometers every time they took vitals. She wanted them charted so she could compare the two.  After three days of this it did nothing but prove that they were the exact same and that sometimes there thermometers were higher than mine.  I took my thermometer back, told her that this was fucking ridiculous and that she had all the proof that she needed in her fucking chart.  She only hates me because I will, can, and have proved her wrong.   

Urine and stool cultures were pulled the second day of her admit.  I had been trying to tell them for weeks to test her urine but no one would do it.  It came back that she had a bladder infection, go figure.  Since a stool culture was pulled Sadie automatically had to be put on isolation until the results came back.  It takes a good six days to get them back so she couldn’t leave her room until then.   That didn’t stop her or the other kids from seeing each other.  They set up camp outside of Sadie’s room, put on rubber gloves, and played whatever they could through the doorway.  The next day, she was due for three different chemo’s.  Instead of holding them until we figured out where the fever was coming from, bitch said to give them.  The next day Sadie needed platelets and then again two days later.  One day after that she needed blood.  Three days later, more chemo.  By now, Sadie has a zero ANC and little to no white count.  Nothing came back on the stool culture, and her blood cultures weren’t growing anything either.  This is fabulous news, but very frustrating.  Without a diagnosis, there is nothing to treat.  Where are the fevers coming from? 

Dr. Bohtla is now the doctor on the 4^th floor for the next two weeks.   She is my every comfort in this whole thing.  I have tried to switch Sadie to her care, but that’s almost unheard of for some reason.  I am so grateful when we have her.  The docs take two-week long turns on the 4^th floor, so it’s a toss-up on who you’re going to get and then you’re stuck with them for a while.  You would think that all child oncologists would be sympathetic and warm and kind, but that is so far from the truth.  Anyways, upon reading Sadie’s chart and reviewing her counts, Bohtla gave me the option to try neupogen.  Neupogen is a transfusion given to boost the white count.  It is common to use with other cancers, but it is only given to leukemia patients as a last resort.  Since leukemia is a bone marrow cancer caused by an abnormal white cell copying itself, anything that boosts the bone marrow is potentially dangerous.  The whole point of all the chemo is to suppress the bone marrow to near death.  Sadie’s docs won’t even let her take a multivitamin because they do not want to feed the immune system.  I told Bohtla to give Sadie one more day and if her counts didn’t come up, we would try it.  This was a very hard decision to make.  Sadie has been neutropenic for weeks, she has no ANC, and her white count has been sitting at a 0.2.  I know that she is at a huge risk of developing sepsis, and if that happens with her counts the way they are, she will not survive it.  I also know that neupogen can take weeks to work, and aside from the cancer coming back because of it, it also has some nasty side effects.  The side effect concerning me was joint pain, SEVERE JOINT PAIN.  Sadie has enough of that and she already has a hard time getting around.  All in all, I had to try it.  Dr. Bohtla wouldn’t have suggested it if she didn’t feel that it was necessary.  I trust her 110% and I know that her concern was the same as mine if we didn’t do it.

The next day, Sadie’s counts actually dropped so we went ahead with the neupogen and continued that for three days.  After the second day of neupogen she needed more platelets, and her fever came back with vengeance.   I was the one that decided to stop the neupogen.  I know it takes a while to work, but after three days, her counts didn’t move at all and the more drug given, the greater the chance of side effects.  I talked to Dr. Bohtla about it, and she agreed that we stop and try a different route.  She put in orders for extensive viral testing.  She pulled every test known to check for possible illnesses and /or viruses in the body responsible for suppressing Sadie’s bone marrow so low for so long.  These tests take DAYS!!  In the meantime, Sadie is sitting with no counts and her fever won’t break.  A few days later, Bohtla orders a CT scan of her lungs and abdomen.  Shortly after the scan, Bohtla comes in and says “we are going to send Sadie for an ultrasound of her liver.  The CT scan shows that it is enlarged”.  Well instantly this is what goes through my head:  leukemia causes a swollen spleen and liver, did she relapse?  Is her liver failing because of all the drugs she’s received this past year?  As soon as I could collect my thoughts, I asked Bohtla those exact questions knowing she wasn’t sure yet either.  She said “Jess I’m not sure what’s wrong.  Let’s get this other test and go from there”.  The feeling I felt was similar to the feeling I felt on D-Day.  To top it off, I had been asking Sadie’s doctor for months to check her liver because Sadie’s eyes and skin were yellow. As usual, she wouldn’t listen.  The ultrasound took forever and Sadie was miserable through it.  Her abdomen was very tender and in order to get a good pic, the ultrasound tech had to push on her pretty hard.

After what felt like hours, Bohtla came in the room with the test results.  She said “Sadie has Hepatitis.”  WHAT!?!?  How the fuck did she get that???  That was actually my exact question.  Nobody could tell me how, but my guess would be a dirty needle, or through a blood transfusion.  I hate saying that, but where else did it come from?  Bohtla pulled the scans up on the computer so I could see them and several parts of her liver where abnormal.  As far as liver function, we didn’t know yet.  More tests were ordered for that but we wouldn’t know the results till the next morning. 

The next morning arrived, and the tests were back.  Liver enzymes were elevated so the liver wasn’t working properly.  These enzymes were to be monitored daily.  The goal is to let them drop on their own.  If they continue to rise, we’re in trouble.  As far as the hepatitis, there is nothing that can be done to fix it, so as always we wait, wait, and wait.  It can take 6 months to resolve itself!!  Dave (child life specialist) came and got Sadie to take her to the playroom.  Bohtla entered shortly after him to talk to me.  She said “you might want to sit down or get another family member here with you before we talk.”  I said “I’m standing, and if it’s that bad I’m the only family member you’re gonna want in here so shoot.”   She told me that she talked to the other docs and they all suspected that there was a possibility that Sadie’s cancer came back and they wanted to schedule a bone marrow aspiration first thing in the morning.  I was anticipating this.  I didn’t have to ask what the teams reasoning behind this thought was because I own the thought as well.  Bohtla starts to touch on what would happen if Sadie did relapse, but then stops herself.  She leaves me to process this.  My thoughts:  Sadie’s counts won’t come up.  Her viral testing came back negative so it’s not an illness keeping her down.  Her counts show elevated lymph’s.  These are fine, but she has no neutrophils to go with them.  Something is eating her platelets and blood, and her whites are pretty much non-existent.  In the event of a relapse on chemo, her counts will not elevate.  If there is a relapse in the bone marrow, it’s not always detectable in the blood as blasts.  It will eventually show itself in the blood, but that’s when it’s at its worst.  If Sadie relapses now, her chances of survival drastically decrease and her treatment will be ten times what it is now.  She’s been off “count lowering chemo” for 21 days now so it’s not the chemo, or is it??  This isn’t happening again, she’s okay.  She’s just a slow responder, she always has been.  God wouldn’t let this be her fate.  She is meant for great things here on earth.   GOD PLEASE DON’T DO THIS TO HER!!!!!!!!  FUCK!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!! I shake it off and go to the playroom.  Dave is lying on the table being “patient” while the kids surrounding him pretend to be doctors.  Sadie is loving it!!!  I see my mom and know that I now have to break the news to her and everyone else.   I pull her aside and tell her. I call mike and tell him.  I call mikes mom and tell her.  They relay the message to everyone else.  I have learned that I can make or break a situation.  When it comes to Sadie, the family seeks comfort in me.  If I panic, they panic. If I lose it, they lose it.  If I say it’s gonna be okay, and tell them I’m not worried, it puts them at ease. So…….that’s exactly what I do.  I put them at ease the best I can, then walk away and lose it on my own.  I walk to the chapel.  I want to walk in and curse god like I’ve wanted to many times before, but instead I walk in, hit my knees, and begin to pray.  I pray for counts, GOOD COUNTS!!  If her counts come up, no bone marrow aspiration and no suspicion of relapse. 

Morning arrives.  Mike and the grandmas are there. We are holding our breath for counts to come back.  Nurse Kara walks in with the results.  NO FUCKING WAY!!!!  Sadie is back in business!!!!! Counts are up, and liver enzymes are down!!!!!  Kara smiles and says “I’m calling Bohtla and having her cancel the bone marrow”.  When Bohtla arrived on the 4^th floor, she came in, smiled, laughed, and said I am so relieved that I didn’t have to do a bone marrow on her today.  I will never forget that smile!!  It was Bohtlas last day on the floor.  Before she left, she wanted to check Sadie’s ferritin levels.  She said that if her iron was high, it would affect all of her organs including her liver and aside from that, they hadn’t been checked in a while.  The test came back at 4644!!! Normal is 12-150.  The last time she was checked, it was at a 1600.  Sadie’s blood transfusions are becoming toxic to her because of the iron contained within them.  The fix for this is not easy and cannot be started until she is in the clear of future transfusions. 

Later that day, I received word that there was a methotrexate shortage.  Methotrexate is the foundation to the cure of leukemia.  Without it, these kids will die.  There are no substitutes, it is crucial!  Every month of Sadie’s protocol calls for methotrexate and 4 months alone, her treatment was based around it.  There are different forms of methotrexate.  The preservative- free kind is the kind used in the spine during a spinal and the preservative kind is used through a vein, there is also an oral form.  The reason for the shortage is due to the main plant that produced the drug in Bedford, Ohio being temporarily closed down in November after federal inspectors said the company had not been properly maintaining equipment or promptly addressing defective product batches and sterility problems.  That alone is scary because our St. Louis hospitals receive there methotrexate supply from this plant.  Sadie has received 20,000mls of this drug in a two month period alone.  This does not include all of her spinals or the escalating doses of methotrexate she received in the phase before this.  What the hell went into her veins and spine that wasn’t sterile? Upon researching this problem, I have learned that oncology groups around the world are urging drug makers to “take all necessary steps to rapidly increase access to this drug” to avoid unnecessary deaths among these children.  Some hospitals are completely out, while others will be out within days.  The hardest to come by is the preservative-free methotrexate needed for the spine.  Using the methotrexate with preservatives in the spine causes seizures, brain damage, nerve damage, and death.  There is no shortage of the oral form.  As I’m researching this, I turn the news on and I see one of Sadie’s docs on TV talking about how devastating the shortage is and how panicked the oncology teams are.  My stomach turns.  I look at Sadie and want to cry.  We have been through so much shit with this fucking cancer and she will not lose to it because of a damn drug shortage.  Is it not enough to have to fear your child’s death to cancer every day, but then have to worry about whether his/her hospital is gonna have the drug needed to possibly save their life?  I don’t know how people sleep at night knowing this is happening.  These children are already fighting the fight of their lives; don’t they deserve a fucking break?  I will never understand this world in which we live.  Nurse Kara walks in during my rage and I ask her what she knows about it.  I don’t think she was really allowed to say, but I found out that Glennon is out of methotrexate and Sadie is due for a spinal within the week. Upon talking to the other parents on the floor, I discover that their children have already missed doses of methotrexate because of the shortage.  Between this, the bone marrow scare, the liver issues, the fevers, the low counts, and every other fucking thing, I knew I was gonna lose it.  I could not contain my anger and Mike just so happened to be in my path of destruction.  He said one wrong thing and I came unglued.  My mom removed Sadie from the room as I tried to get mike to go outside and fight me.  I provoked him in every possible way to fuck with me, but he wouldn’t.  I’m pretty sure I hit him and pushed him around, but being the man he is, he never laid a hand on me.  I knew if I didn’t leave the hospital, I would be escorted out.  At that point, our nurse was getting involved and I didn’t want to scare Sadie so I grabbed a hotel room close to the hospital and slept it off.  I am a crazy bitch when it comes to Sadie. 

Sadie was released the next day.  Her counts were still on the rise.  We spent 26 days in the hospital this phase including Valentine’s Day, we were in the ER 6 times, Sadie had 35 doses of chemo, 6 platelet transfusions, and 5 blood transfusions.  In addition to all the bullshit we had just gone through this past month, somewhere along the line, someone messed up one of Sadie prescriptions.  We went to get a refill and the doctor says, “What’s that?? I didn’t put her on that”.  What the fuck ya mean you didn’t put her on that because she’s been taking two pills three times a day for the past month!?!?  The med in question was the medicine that was given to her for her nerves as discussed in the first part of this phase.  The doctor said she put her on A medicine but not THAT medicine, yet that’s the medicine we were given after turning in the written prescription to the pharmacist that she wrote.  After doing some research, the doc came back and says “the pharmacist gave you the wrong script, but it’s okay”.  NO IT’S NOT AT ALL OKAY!!!!!!  She said the pharmacist researched it and said it was in the same family as the drug she wrote for and that he checked for interactions between that and Sadie’s other meds and there aren’t any.  Well that’s all fine and dandy, but you’re just now checking for interactions after she’s been taking it three times a day for the past month.  Aside from that, what the hell was I giving her?  The script was written for one thing and filled out for something totally different.  Not a generic form, but a totally different drug!!!  The pharmacist admitted that he fucked up and he was genuinely sorry, but to what point is that acceptable?

Not Without Consequence PART 1

This post is about the first month of the two month phase sadie has just completed.  I will post on the second month of the phase as soon as I get the opportunity to do so.

Another phase down, but definitely not without consequences. This phase was the last phase before maintenance. By maintenance I mean the last phase of treatment that she will remain in for the remainder of time she is to receive chemo. She still has 1 1/2 years left. I dreaded the phase she just completed more than I can say. I remember standing in my garage sobbing to my mom and mike that something bad was gonna happen and that I had a really bad feeling about it.  She started off right away with spinals, steroids, dox, vincristine, and peg, all of which are chemo's except for the steroids of course. We started this phase right around Christmas time which was a plus because Sadie was able to stay home for Christmas before the chemo really started knocking her counts out.  I am so grateful for that, that was all I wanted for Christmas and I got it.  She had an amazing day and do I need to say that she got everything she wanted and everything she has probably ever asked for in her lifetime. This bliss was very short lived.  Days later the chemo started taking affect and the steroids kicked her ass.  Dox is the chemo that affects the heart, vincristine causes nerve damage, and steroids weaken your bones.  Sadie started complaining of joint pain and eventually reached the point where she couldn't walk because it hurt so bad.  Her heart rate elevated to the 150's-160's and that was at rest.  When she was awake, it would elevate to 200 and sometimes above.  Normal for her is 80's. She started shaking so bad that she couldn't feed herself or hold anything in her hands. I called the docs daily for a good week and a half and they kept telling me see was fine.  I have to get the OK from them to bring her in and they wouldn't give it to me.  I was dosing her with oxycodone every four hours, and it didn't even touch the pain she had.  Finally, one night she looked at me and said I want to go to the hospital.  That scared me because Sadie hates the hospital and would never elect herself to go there.  I was on the phone with the doc only an hour prior, but I called her back and said I'm bringing her in so be ready to hear from the ER doc when we get there.  She annoyingly agreed. Thank god we brought her!!! Counts were drawn and I asked for a BMP to be drawn as well.  The ER nurse tried to tell me it wasn't necessary but I argued that it was. A BMP is a measure of electrolytes in the blood and it also evaluates organ function. They reluctantly ran one, and I bet my ass they are glad they did.  Her levels were so off that they thought there was an error in the lab. They collected more blood to send off to have another one ran.  That one came back the same.  The most concerning of these was the sodium.  When your sodium is low, you run into severe life threatening problems.  Sodium issues are usually a result of something in the brain.  She was going to be admitted for that alone, but other issues had to be addressed as well.  The ER doc scheduled an emergency MRI of her lower back.  Lab technicians had to be called in from home at 2 in the morning. That's a red flag to me that he thought something was seriously wrong.  She presented with excruciating back pain, uncontrollable shaking, numbness in her legs, and a fucked up BMP.  These docs are thinking pressure on the spine causing swelling in the brain from an unknown source.  HOLY SHIT!!!!! WHAT?????

Panic mode, I couldn't calm myself down, my world once again came crashing down around me.  At 4am Sadie was whisked away from me and being sedated for the MRI.  Putting her out with drugs is really hard for me to accept yet it happens at least once every three weeks and sometimes weekly. You would think by now I could accept it, but i cant.  So...... she gets out of the MRI after waiting 2 of some of the longest hours of my life, and now we have to wait for results.  At this point, we are still being cared for through the ER cause they cant assign her to a floor without a diagnoses. Yes she is a cancer patient, but the cancer floor would not be suitable for the problems they were expecting.  Results came back, and this is what they were: Bones were very thin and porous. They are frail and weakened.  Her bowels and intestines were SEVERELY backed up. Vincristine causes constipation and she received it three weeks in a row. Good news, No tumors or growths on the lower spine. Yay!!!!!!! We were sent to the fourth floor to control the sodium issue and the pain, and to figure out what the shaking was a result of.  By now its 7am, time for bed.

A few hours later her doctor comes in. I said, "OK so we know that there is nothing on the lower spine, but what about the brain?"  This is how BITCH she is: She tells me that she doesn't doubt that there is swelling in the brain but she will not order a scan for it unless Sadie starts having seizures. She then tells me that Sadie's shaking has to do with vincristine overload causing nerve damage.  I told her MONTHS ago that Sadie was having issues with the vincristine. She was supposed to decrease the dose to prevent this predicament that we are in now, but she never did it and told me again that she wont unless Sadie has a seizure that causes damage. If she seizes and doesn't have any ill effects from it, she will still keep going.  Upon talking with another doc, that dose should have been decreased a long time ago.  Sadie was put on a nerve med for the pain and the shaking, its also an anti-seizure med. In addition to this, a bladder infection was discovered in Sadie's urine culture from the ER. Four days prior in the Costas center on one of her treatment days, I begged them to take a urine sample cause she was complaining of burning when she went pee. Again, it wasn't medically necessary in their eyes.  A bladder infection to you or I is no big deal, but to Sadie or other cancer patients it can quickly spread and even turn into sepsis. There is no telling how long she had this.

After a few days in the hospital, sadie was released to go home. That hospital stay was very hard for me.  It was the very first time I allowed Sadie to have morphine. I hate morphine because it shuts of sensors in the brain that tell you to breath. This is mostly dangerous during sleep and because of this, she was hooked to a monitor her entire stay. I swore I would never drug her with morphine, but her pain was awful and the oxy wasnt working.  She hadn't slept but a few hours each night for over a week. She cried out in pain constantly.  Loud, agonizing, heart wrenching pain. To give you an idea of how bad the pain was, they were dosing her every three hours with the morphine, and had her on a continuous morphine drip in between doses and it still didn't alleviate her pain.  She was seriously fucked up. Im still pissed off that they wouldnt listen to me sooner.  Some of this could have been prevented if they would have just listened.

I was terrified to take her home, and Sadie was scared too. When we got released she kept asking me if she would be alright and if I could take her pain away at home. I told her I would die trying.  She came home on all sorts of shit. Six different meds dosed several different times throughout the day.  Pain management alone was a challenge, much less remembering all this other shit that had to be done.  With the help of those that love her most and long sleepless nights, we did it!!!  We managed the pain around the clock, cleared the bladder infection, cleared her bowels and intestines, and gradually weened her off some of the meds.  Unfortunately, this part of the phase was the easy part.

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.

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.

No clearing in sight.......

Nanaw and sadie

Sadie behind the nurses station hangin out

patrick and sadie

the glennon clocks

        So, we are still at the hospital.  Sadie has encountered a few problems that have set us back from going home.  First and foremost, her kidney fuction has been a concern.  Everyone of us has a creatinine baseline, and when that makes a big jump of any kind, it is a concern that our kidneys are in distress of some sort, especially after recieving a 24 hour chemo drip. By creatnine, I mean the ability to remove/filter waste through the kidneys.  Sadies creatinine made that suspicious climb within 24 hours of the chemo, so it has since been monitered every 12 hours along with the methotrexate levels in the blood.  Protocal/research says that methotrexate should clear the body within 48 hours.  Well, as you can plainly see from this post and earlier posts, this has never been the case for sadie.  Our shortest stay with this type of treatment has been four days.  This go round, we are about to approach our sixth day, and we will be lucky to get out of here before the eighth. 
        Her not clearing the methotrexate is our second set back.  They have had her maxed out on the ammount of fluids allowed for a child of her size, in hopes to flush it out faster, and to help with the kidneys, but her body has yet to rid it.  It is very slowly moving through her.  If the chemo clears within 48 hours, it does little damage to the "good cells" since its a cell specific drug, but.......any chemo left behind beyond the 48 hour mark starts knocking out everything.  Needless to say, Sadies blood, platelets, and whites have drastically been reduced.  A blood transfusion is in her near future, but I forsee her platelets recovering on their own.  Dont ask me how I know that, I just do.  Her pattern, her body and her treatment, is all I educate myself on at the moment.  Every chemo drug targets cells in a different way, and as I've said before, they are all count lowering, but..... methotrexate is "suppose" to be one of those that isnt extremely bone marrow supressive cause its "suppose" to leave the body fairly quickly.  "Suppose" to my ass!!!!! Like most harmful drugs though, the longer it remains in the body, the more damage it does to it.  This is where we are at with it now. 
        Our third set back is the fever.  This is sadies fourth treatment like this within two months, and every time, like clock work, she spikes that damn fever.  You'd think they would figure it out, cause each time the fever gets higher and lasts days longer.  Their only response is, "we dont know why she does that".  I have researched it myself, and its a form of an allergic response to one of the drugs given to help lessen the toxicity affects of the methotrexate.  This medicine is given every six hours starting 18 hours after the methotrexate is completely infused, and she has to have it to protect her organs.  With each admission we have had for this treatment, after that first dose of the rescue med, she starts in with the fever.  Now tell me thats not the cause of it........I also believe, this is the exact reason why she always needs a blood transfusion after this specific treatment.  In addition to the chemo affecting the production of blood, fevers feed off of it and eat it up.
        Its so hard to explain all of this in terms that anybody could understand, if you cant follow me, im sorry.  When I first started educating on all of this, it was a foreign language to me, and now I find it hard to explain in non-medical terms lol........Again, I appologize if I am hard to follow.  I know what I want to say, but I am trying to word it so its some what understandable.  Anyway..........sadie had a horrible night last night, she had to take meds at 1am, and she hates being woke up.  The first time we tried, she spit it all over me.  The second time we tried, she gagged on it and out it came.  Finally, i was like, lets try the pill form.  Yes, Sadie girl knows how to swallow pills, but at night the liquid is given cause it is so much easier than trying to get her to drink down two pills when shes throwing a tantrum cause her beauty sleep was disturbed.  The med was the rescue med I just mentioned and it has to be taken exactly on time, so she had no choice in the matter.  The shitty part, is that every med needed has to be ordered, and sent up from the pharmacy.  She kept falling back asleep before the new dose arrived.  She finally wound up taking the pill form, but she was so upset about it.  I secretly cried after she was settled back in bed, I HATE seeing her upset, and she will upset herself so bad that she will start vomitting.
        With her hemoglobin being low, in combination with the chemo, she was very tired today, and not herself.  She did however get a small burst of energy and played kick ball with Patrick in the halls.  She had her nurse calling every floor today looking for blue popsicles.  We have popsicles on the floor, just not the blue ones, and what she wants, she gets.  Every floor started sending up blue popsicles through the transport tubes that run through the hospital.  She says, "popsicles are falling from the sky".  She is so spoiled by her nurses.  Sometimes, they just come and take her from me, and I'll find her behind the nurses desk just hanging out.  She'll look at me and say, "go back to your room mom".  Im so happy that she has taken to them like she has.  They all fight over who gets to be her nurse for the day, its so funny, and so reassuring to me, cause it shows that they really care about her.  Its not just a job for them, its a passion. 
        Maw was with us monday-thursday, and nanaw was with us thursday-friday.  Tonight, shes got me and dad.  We went exploring earlier in the wagon, we covered every floor. Friday nights are so dead here, so I thought it would be a good opportunity to see some new scenery (with her full face mask in tact of course).  Sadie calls these outings, "ventures".  There are beautiful, moving clocks scattered around the whole hospital, and each time we come, we revisit them and try to find new ones.  She had a good time, and it was nice to see new things. 
        This is off subject, but I feel really bad about it.  I was so aggravated earlier in the week.  There was a little boy across from us, I'd say between 1-1 1/2 yrs old, that cried non stop.  He was here before we got here, so I dealt with it from day one of admission.  All hours of the night and day, this child cried, and cried, and cried.  It didnt matter if you shut your door and turned the TV up, you could hear this kid crying throughout the entire fourth floor.  Seriously!!!!!  It got to the point that sadie started questioning me about him, and she was clearly upset by this constant crying.  This is when I got mad.  Not at the child, but at the mother.  She refused to shut the door to her room, and she would not hold that baby to soothe him if her life depended on it.  CLOSE YOUR FUCKING DOOR, AND TEND TO YOUR SON!!!!!  No exaggerating, you could not sleep.  He cried 20 hours out of the day.  So anyway, I peeked in on him one day while the mother was away, and he had a broken arm and a broken leg, on opposite sides of the body.  I initially thought the way the mother was towards this child was weird, but when I saw the injuries, I knew something wasnt right.  Wed night, I saw the mother walk out with what appeared to be three of her friends, and she never returned.  The next day, social services came and took the baby.  She was linked to being a cause of the injuries, and my guess is that she got word of that, and bailed out.  How? and Why?, is all I can think.  People are so F'ed up.  I feel so bad now for getting so aggravated, and wishing he would go home. Now, all I want to do is give him a hug.  That baby cried so much cause he was neglected and abused.
        Well sadie is sound asleep, so I am gonna hopefully join her.  I have the hardest time falling asleep, my mind never stops.  Sweet dreams to all.........