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.........

Home sweet Hospital



the oscar doll

         We had an early birthday party for Sadie last Sunday with the immediate family.  Her birthday isnt until the 21st of september, but her next phase of chemo is approaching and she will be confined to the house with no visitors during this time.  All of her chemo meds are count lowering to an extint, but this next phase is very intense and extremely count lowering.  I will post about what this phase consists of at a later date. So anyways, she had a blast at her party, the family has not been together like that since last christmas due to her treatments.  I had to give her a party one way or another, and that was my only chance to do so.  She was like "OMG its my birthday?????"  Totally confusing to her im sure, but it was a good time and thats all that matters.  A huge I love you, and thank you to my family for pulling it off on such short notice.  I felt very complete with the family together, and cant wait till this christmas to be able to do it again pending sadie's counts.  Please know that we think of you all everyday, and would be around always if we could. 
        We are back at the hospital as of Monday.  No spinal this time WooHoo!!!!!!  She just got off of her 24 hour drip around 7:30 this evening, and word just came back that her liver enzymes have increased drastically this go round.  This is not good news.  Retest is set for 7am.  They better figure it out quick and do what needs to be done to fix it.  Sadie already feels like shit.  Usually, it takes a few days, but it hit her pretty quick this time.  That tells me, that its gonna be rough the next couple of weeks.  When shes off, or in a bad mood, I am as well.  Today was really bad.  STUDENT DOCTORS, need I say more??? I threw a fit to anyone and everyone in my path about them.  They are not allowed in my childs room for any reason.  It is posted on the door and they have verbally been told as well, but.........there is always one that thinks they are the exception.  What the hell is so special about them, I do not know, but im not having it.  I really dont want to get started on them again, so I wont. The knocks on the door throughout our stay are unbelievable.  GET THE FUCK OUT OF MY CHILDS ROOM!!!!!!!!!!!!!!!!!  I dont know who these people are, or where these people have been, yet they want to spread there funk to my daughter????  I dont think so, lets take it outside.......................  I am such a mean bitch when it comes to my baby girl, but I feel like I have to be.  Ive tried being nice.  Nice doesnt work.  Okay, again, im done with that.  It just really gets me going.  To Ray, I loved your post about these "students". Where are you when I need ya??? lol
        So my mom decided to get this oscar the grouch doll for sadie, and told sadie that whoever is "crabby" has to hold oscar until they are not crabby anymore.  I know I was her inspiration on that one, cause as soon as the doll was bought, everyone in the room agreed that I should have to hold it.  Come to think of it, im the only one thats had to hold it.  They are all too amused by this.  Am I really that bad???  To justify my mood, I get pissed for good reason, and shouldnt have to have the oscar doll.  Thanks Momma.  Its like the bell all over again.  I can see it now, I should just get oscar tattooed on my face, cause I'll be seeing a lot of him, and I need my hands free. 

sadies cousins at her party

my beautiful niece Mazi

my bro, aka uncle mike

me and my bro mike

my bro, aka uncle jake

me and my sis, aka aunt shawnna

the guys, not a good combo

Dray, maddie, mazi, sadie, ty, sonny, luke

all the kids prints

happy birthday my love

my sis, aka aunt jen, uncle mike and my nephew sonny

my amazing father

I have a new niece in that beautiful belly

mike, aka sadies daddy

she is the sweetest little girl ever

mike and mazi

im Mazi's Fav lol

my damn sign I always talk about

        Today was like a mile marker so to speak.  It was the last HD methotrexate treatment, and the end of this phase, other than the oral chemo that she will continue at home through the 9th of august.  Her next phase is mostly out patient except for one treatment, and thats just an over night stay.  Unfortunately, we will not be totally free of nights here though. With her counts low, she could get sick and is most likely to run a fever at any time.  When this happens, away we go, and we have to stay until her counts recover.  This took 9 days the last time it happened.  She fell on her knee (barely scraped it), and within 12 hours, infection set in and fever spiked.  A simple scrape on the knee turned into staph infection that fast. I hated this phase so much because of all the hospital stays, but now that I think of it, the planned stays are better than the spontaneous ones in the middle of the night, or at any random time throughout the day.  I never get too comfortable at home because I know our being there is only temporary and short lived.  I am so grateful for this place, but I just want to be at home.  Sadie should be living the life of a three year old right now, but instead she spends her days sick and hooked to a pole recieving treatments.  The neighbor girl is always asking to play with her, and I had to tell her mom why sadie couldnt. She is always watching the other kids play, and will make comments like; "momma I wish I could play with them, but I cant because I have cancer." It pisses me off.  She could play with them, but if she were to get sick, it could kill her.  Its just not worth it to me.  I as her mother dont even kiss her for fear of her getting my germs.  It kills me, but I tell her as soon as I can, im sucking her lips right off her face.  She says she cant wait. I dont think she believes me, and im so serious.  She is very aware of germs, so she will ask me if I have her mask, or if I washed my hands, or if I drank from her cup, etc......She is so wise beyond her years, and that saddens me.  I reassure her daily that she is special and that god has chose her for this for a reason.  I do nothing but dote on her constantly.  I over hear some people whisper, "look at her, whats wrong with her??"  To these people, if my daughter wasnt with me, I would bash your face in.  People are very cruel.  I was never like this, but my home life was diffferent.  My father is handicapped so I have dealt with rude people all of my life.  At two years old, he was given a vaccine to prevent polio, and instead, it gave it to him.  He knows all about hospital life.  That wonderful man has endured more surgeries and treatments than even sadie will be able to comprehend.  As a toddler he spent months in the iron lung with nothing but a tiny window above his face to see his parents through.  He called it his rocket ship, and thats exactly what it looks like.  They have one of these at the science center.  For those of you that have never seen one, you should google it.  Its very interesting, but very sad to me at the same time.  My father is very amazing and his stories never bore me.  He deeply sympathizes with sadie because of his own experiences and it is very hard for him to even speak of her cause he gets so upset.  To this day, he hates doctors and hospitals, and wouldnt go to one if he was dying.  Seriously!!!!!  He remembers it all.   Think of our medical treatment back then.  It was all experimental.  He is a true inspiration to me, as well as my grandparents for pulling him through it.  My family is so wonderful.  I do and I dont want Sadie to remember this.  I want her to always value life, and give back to people.  I want her to remember all of those that helped her.  I dont want her to remember the pain and losing out on her childhood. 
       
       
       
    

The difference

Sade has had a pretty good week, but she woke up with some kind of illness today. She was coughing all day yesterday, and in her sleep last night, so now today, it's worse. Were scheduled for HD methotrexate on monday, so she can not be getting sick. I hate that added stress on top of everything else. We have been fighting a lot lately, lol. She can't go in public at the moment, and it's so hot outside, so she is confined to the house. That is her life right now. Hospital and home, hospital and home. It sucks!!!! She is so needy and whiney, and crabby,and is so mean to me. I know she's aggravated, and she can't comprehend that I am as well. I suffer right along with her every step of the way. Our moods effect each other deeply. I feel like such a bad mom. Three year olds are hard enough to deal with, but adding cancer to that makes it a million times worse. I take full responsibility for her being the way she is, for I can't discipline her, cause in the back of my mind, I know she's sick and I fear losing her so I spoil her rotten. I have no one to blame but myself, so how can I be mad at her. She is such a brat, and most days I want to pull my hair out because of it. I can't take it, and I feel like a horrible mother for wishing it was bedtime, or wanting a break. Am I the only one that wishes these things?? I am grateful for everyday I have with her, but OMG, is she a pain. For example, she has a bell that she rings when she wants something (thank you maw for teaching her that), or I serve her food and she throws a fit because it's not on her princess plate. What about my princess plate?? Where is my bell?? Yesterday, she decides that she wants to play with face paint, so I paint her face and she paints mine. When were done, she insists on putting the lids on, after she pushed me away for trying to help her. So......I walk to the sink to wash the paint brushes an here she comes running "mommy will you help me?", I instantly knew something happened. She had spilt the paint all over the carpet. Hot pink paint!!! To top it off, she stepped in it and tracked it everywhere. I freaked out. My carpet is a very light beige. I was like, oh my god what did you do?? She said oh mommy I'm sorry, do u still love me?? I said of course I do, she says ok then let's not worry about it. Need I say that I need new carpet?? Mike says he wants more kids, and since were not together, he says he will just donate the sperm so his children will have the same mother. LMFAO!!!!!! That ain't happinin captain!!!!! One is enough to last me 10 lifetimes. He has seriously fallen off the deep end with that one.
So I recently set up a Facebook account. The last in the world to do so I'm sure. Something about posting your life online and talking to people that I hadn't seen in years that probably hated me in high school, was not appealing to me at all. I was the biggest bitch in high school, and I'm sure anyone would vouch to that. I wasn't mean cause I didn't like people, I was mean cause I'm socially and emotionally retarded. I never let many people into my world. Some may have taken this as snobby, but its my shield and its a horrible vice ive always had I feel bad now, cause all of these people are totally amazing. They everyone are concerned and pray for my baby girl. Anyone of them would help me if asked, and just having them to talk to now is the greatest feeling of comfort. Thier support is phenomenal and I can't thank them enough. One in particular, I have to post about. With her permission, she has allowed me to do so. I have very briefly touched on my OCD and anxiety, but the extent of it was left unsaid and will remain that way until another day. I'm not ready to let my readers know how crazy I really am just yet. Anyways, I find Courtney on FB, and I discover that she suffers with the same shit. She is just as crazy as I am, listening to her was like listening to myself. I feel so bad for her, yet hearing it out of someone else's mouth, is so hilarious to me. It's the most stupid condition I have ever heard of or dealt with, but there is no stopping it. To Courtney, I will not share the depths of your OCD, but when I share mine, yours too will be revealed, for you are my freaky twin. I love having someone to share it with that understands. I have not laughed so hard since before Sadie was diagnosed. I thank you for this. You brighten my day and make it a little easier to get through. I love you and your family. Thanks again to all for praying for Sadie. Also....a big thank you to all the new-commers on this site that have taken the time out to read sadies story and make her apart of your thoughts. As her mother, I am in debt to you all, and you can bet your ass, that if ever needed, I will be there for any one of you in a heartbeat. These are the people that make a difference. Even If you have only helped one person, you have still made a difference in that persons life, and that is an accomplishment that not everyone can say they have made. All of you are my difference.

The best of the worst

Well the weekend was good. Crazy busy at work on Saturday, so the night flew by. Sadie started vomitting again on Monday morning. Unfortunately this is when she had to go for counts, so needless to say, the trip was awful. We went to clinic instead of local just in case she had to be transfused, and I can't believe it!!!!! Sadie produced her own blood!!!!!! It was so low when we left on Friday, and she has not produced her own throughout the whole HD methotrexate phase, so I was shocked. No transfusions!!!! SO other than her throw ups and her constant falling she is good. By falling, I mean this: vincristine is a chemo drug that she has had since day one. It is given as a push in her port over a couple minutes. It affects the nervous system in forms of shaking, tremors, siezures, falling, etc. Anything that has to do with the central nervous system, it affects. So.......Sadie falls all the time. Her legs just give out under her, and she is very unstable. The more the drug is given, the worse it gets. It becomes toxic in the body when patients can not walk without assistance. When this happens, it can no longer be given. Sadie has to have this, so not giving it is not a good thing. It seems to be getting worse, and she has been complaining about pain in her legs a lot lately. Like most drugs, the effects are corrected once treatment is stopped, but we still have 22 1/2 months left before that happens. She will receive this particular drug throughout her whole treatment.
We saw Ravens family when we were leaving yesterday. Like always, her grandpa is always wanting to talk it out, and I am more than willing to listen. Some of her jelly tumors FILL her abdomen, so the pressure on her insides is intense. They inserted a draining tube down her nose, to her stomach, in hopes to relieve some of that pressure. She said she felt a little better, so they were gonna send her home on this pump to make her more comfortable. Mike and I both have always peeked in on her to say hey and chat for a bit, but I don't know how to do this now. I know she enjoys the company and interaction, but I'm afraid to see her. Images of Emily lying there lifeless, haunt my thoughts, and I don't want to remember Raven that way. Like Sadie, she was diagnosed in February as well, so our families have been in this together since the beginning. When Sadie was diagnosed, we were told that she had the best cancer for a child her age to get. "Best" and "Cancer" should not be used in the same sentence, much less using the word "best" to describe a cancer, but now I get it. Sadie is lucky. This family is lucky, I am lucky. As sick and twisted as that sounds, it's true. Sadie has the best of the worst and I am so grateful for that. Cancer is cancer in any instance, but some really are better than others. Dear God, Thank you.......

Thank you

Thank you all for your response to Raven. Sadie is good today. Fever last night, we almost had to go back in. She is soooooooooo happy to be home. It's back to work tonight for me, so Sadie gets a sleep over with maw. They are both like little kids on Christmas morning when they get to see each other. Thank you again to everyone for all of your compassion and love towards my family and others in our situation. Have a wonderful weekend.

Home again, and prayers for Raven

Well, Sadie did not clear her 5am draw, but she did clear her 1pm draw, so we are home at last. She was so excited to come home. When we were pulling out, she said "I am so sick of this place". I had them pull another CBC today, and her counts are unfortunately dropping. Her platelets have dropped by thousands within a day, and so have her whites. We will probably be back in for a blood transfusion in a couple of days, but I'm hoping she at least makes it through the weekend. If so, she will go for a finger poke on Monday to see what damage was done by the chemo.
Upon leaving today, we ran into Raven's grandparents and heard some very unfortunate news. Ravens story is very sad. She is 11 years old, and was diagnosed with neuroblastoma. By the time it was caught, she was already in stage four. She has done several treatments, but her cancer is not responding to them. In combination to the solid tumors she has, she also has jelly tumors, which, hence the name, are jelly. They can not be removed, or operated on in any way. She is such a fighter. The first time we met her, was when Sadie was first diagnosed, and as miserable as she was, she fought it with all her strength. We have talked to her and her family a lot, and always saw them in clinic and up on the floor, so when we hadn't seen them in awhile, I thought, Great!!!!!!!! She must be doing good!!!!! Wrong........a month ago they told her grandfather that she had two months left to live. They sent her home on an oral chemo to prolong her life, and morphine for the pain. A couple of days ago, he said that Raven asked him what was going on, and for him to be honest with her. He looked at her and said "you will not be here for Christmas this year". He didn't tell her exactly what the docs told him, for he didn't know how. Today, she asked him if she could go stay at the hospital and get more medicine for the pain, so......the hospital they went. He said he thinks she is scared of the unknown more than anything, and being at the hospital kinda eases that worry. In an earlier post I had commented on some people having so much bad in their lives and very few moments of good. This is Raven and her grandparents. Just before Raven was diagnosed, her mother was murdered by her husband, who was Ravans step father. Ravens Biological father is not around, so this is why she lives with her grandparents. Prior to that, her grandmother was in an accident and is now wheel chair bound. I can not imagine a day in the life of this family. When I hear things like this, is when I question God. I have always prayed for Raven and her family, but many more prayers for them are needed now. We can not stop GODs will, but God can bring them peace. Please pray that he does.

Dave



Sadies "dave doll" (orange).  LMFAO!!!!!!

 I gotta introduce you all to Dave.  Dave is a child-life specialist, meaning that his job is to interact with the children, play games with them, and shower them with gifts while they are in the hospital.  He specializes in the cancer patients, and is designated to the fourth floor.  Cool job huh????  He is one of my favorite people here, and we know just about everything there is to know about each other.  Sadie is very special to Dave, and she recieves alot of his attention.  There is a toy closet here stacked from floor to ceiling with nothing but rows and rows of new toys.  So........needless to say, he spoils the hell out of her.  Dave takes to alot of the families, but not like he has taken to ours.  It is as though he has been apart of us for years.  I love him so much.  He has absolutly no filter on his mouth what-so-ever, so whether your wanting honesty or not, he is giving it.  Although there have been many times that Ive wanted to smack him for saying some of the things he says, I love him for that trait.  He is truly a very special and unique person, and the fact that my daughter likes him so much, is enough for me to find a forever friend in him.  He is a lot of the reason that we were able to keep our sanity after the initial diagnosis.  He helped to take our minds off of the chaos at hand, and filled us with positive feed back that our sadie girl was gonna be okay.  Ironically, the first time I met him, I thought, "who the hell is this guy, and there is no way in hell that my daughter will ever take to you in any way".  Wow, was I wrong.  Sadie loves him, and even has a little doll that she calls her "dave doll" lol.  We are all almost too comfortable with each other now.  Dave brings laughter and sunshine to my day.  

Still here....

Sadie still has not cleared the methotrxate.  Her 42 hour level was a 0.76 and her 48 hour level was a 0.41.  Like clockwork, everytime we are here for this chemo treatment, she spikes a fever.  Luckily it is low grade and hopefully it stays this way.  Her next draw is at 5:00am. I do not foresee her clearing by then, but I could be wrong.  She was'nt as active today, so the chemo is definately catching up to her, but hopefully she has many good days to come.  Maw had been here with us since tuesday, but had to leave today.  She and Sadie break my heart when they have to part.  Sadie cries, so maw cries, then I cry cause there both upset.  We all do better when maw is here.  Sadie is content, and so am I, for my mother is my greatest friend, and mike swears that I am nicer to him when she is around, so even he will say "I miss maw".  If she only knew how much she is loved and missed when she is gone.................  Sadie had a complete meltdown when she left, and didnt really calm down until Nanaw got here.  I dont understand why she is so miserable with just mike and I.  We are by far the coolest parents a child could have, so I dont see what the problem is.  Nanaw came for a sleep over, but has to leave early in the morn, so poor sade is stuck with me tomorrrow.  Oh how horrible that must be!!!!!  Parting with Nanaw is not an easy task either.  Sadie likes to see her visitors off by waiving to them until they are out of sight, I have not seen a person yet, who can wave back and not cry while doing it.  Its awful.  I love my baby girl sooooooooooooooooooooooooooooooooooooooooooooooooo much, and judging by all the tear-filled eyes and sniffling noses of everyone else, I know she is loved that much by them too. 

Where do I start???

     I dont know where to start.  My last post was very bitter and filled with anger.  There are so many things and so many feelings that I have not yet expressed or talked about, but I feel that I am ready to now.  Okay, maybe not ready to, but its needed.  I started this blog for two reasons. One being that family and friends could keep up with sadie's treatment and her day-to-day well being first hand, and the second as an outlet for my feelings.  If you know me, then you know that just saying the word "feelings" makes me want to throw up in my mouth.  So many have told me to just let it out, so..........let it out I will.
     First of all, I want to say thank you to all of you for listening to me bitch on a daily basis, and more importantly, taking the time out to keep up with little sadie girl.  There have been a couple thousand views in under a months time and although not all of you leave public comments, I do recieve and thank you for your emails.  Some of you I do not know, and you do not know me, and for that simple fact, you amaze me.  My daughter is in your prayers without you ever having met her.  Individuals like yourselves are very special and the world needs more people like you in it. People all over know Sadies story. 
     Secondly, I want to give a Sadie update.  We were admitted yesterday for another HD methotrexate treatment.  She recieved a spinal tap with an injection of chemo into the spine, a dose of vincristine (chemo through IV), and the HDM in addition to the oral chemo she has been taking for weeks.  She just got off of the HDM around 3:00pm today.  Her methotrexate level came back at a 65.06.  Kidney function is good, liver enzymes not so good, but should repair with time.  For those of you that have no idea what I am talking about, read the post HD Methotrexate. 
     Counts were drawn on tuesday before chemo was started, and they were good.  Another draw on counts is scheduled for tomorrow.  Exciting news, we got the shower room again!!!!!!  We called in advance to make reservations lol. Seriously........   So far, no throw-ups, but it usually doesnt hit her till we get home.  She is in such good spirits.  I love seeing her this way, and in a sense its kinda nice to see the people here.  It truly is a second family and as much as I hate being here, I miss them when im gone. 
     Upon arriving on the fourth floor tuesday, I learned that we are about to lose yet another member of our family to this disgusting disease.  James, a six year old, adorable little boy, has a brain tumor that not even the best of the best hospitals will operate on.  His mother informed me that he was given, at most, three months to live.  One month, if they choose to take him home to pass.  Here's the worst part; nobody stays up here with him.  Every night between 6-8pm, the family leaves, and he is here alone.  I can not tell you how many times I have walked past his room just so I could talk to him, say a prayer, and give him some company.  If I could, I would sit beside his bed every night. If I could, I would wrap him in my arms, and give him all the love in my heart.  If I could, I would give my life to save any one of these children.  I dont just worry about sadie, I worry about them all.  I pray for them all, I think about them all, I cry for them all, I lose sleep over them all. Every single one of them hold a place within me, that will never go away. 
     I will not say what I want to say about James's mother, NO, actually I will.  James has been in here for a LONG time, and not once has that woman stayed with him.  I get so mad and try to avoid her like the plague.  If I have to listen to her talk so blah-za about her son one more time, I am gonna flip out. If you absolutely couldnt stay, that would be one thing, but she simply doesnt stay because it is uncomfortable for her to do so.  BOO-HOO BITCH!!!!!!!!!  Uncomfortable is my fist in your face and my foot up your ass.  There is nothing that could keep me away from my child, NOTHING, EVER!!!!!!  Thinking about it makes me sick, and infuriates me beyond belief.  I hate that I have to know these things and witness them first hand, but I will die a better person because of it.  It has changed my heart in ways that I can not describe.  I have always been an overly-sympathetic person as is, but this has really sent me over the top.  I can not believe some of the parents out there.  James's father is not around, but his mother has a boyfriend, and if he was any kind of man, he would suggest that she stay, or elect to stay himself if she would'nt.  Yes, it is none of my business, but she makes it my business by talking to me about it.  Little does she know that I check on him whenever she's gone.
     Speaking of piece of shit parents/BF's/GF's, I gotta get this off of my mind.  In an earlier post, I had talked about a falling out with my family.  This happened when Mike and I decided to get a divorce.  I love Mike dearly, but sometimes two people trash a relationship so bad that its next to impossible to see past all the hurt and resentment, and move on.  I came to this place in our marriage a very long time ago, and at one time, so did he.  We have lived apart more than we have together, and the fighting was not healthy for either one of us, but more importantly, it was not healthy for Sadie.  I was done.  Done with it all.  I met someone else just as the divorce was put into the works.   I did not plan it and I did not see this to be a big deal, cause in my mind it had been over for so long.  My family on the other hand, perceived this to be a horrible thing, and I went through hell for it.  Any kind of change is hard, and a divorce is like a loss in a way, but the big issue at hand was that I wasnt divorced yet.  I had to come to terms with the fact that it was my decision to make regardless of how they saw it.  Selfish it may sound, but when it comes to matters of the heart, that is a very personal decision that nobody can make for you. We seriously quit talking because of it, but I had to live my life for me, and not for anyone else.  So anyways............I meet this guy whom I think is great.  For privacy purposes, we will call him douche bag.  So I meet douche bag, and he is everything I could ask for in a man.  I dont introduce sadie to men, unless its a friend or something, but for some reason with Douche bag, I did.  Before I did, we had this long conversation about her being my number one priority, and that if in any way I did not like the way he was with her, he was gone.  Well............Sadie took to him right away, and they became best buds.  He treated her like a queen.  UNTIL...........almost a year later when sadie got diagnosed with cancer.  Where he is now, I do not know, but I do know this:  He used her to get to me.  I know this to be true because since he has left he has not checked on her once.  Regardless of his "problem" with me, for whatever reason, Sadie did nothing to him.  I have beat myself up night after night trying to figure out what I could have done different, but reality is this:  It's not me, it's him. He is a fucking creep.  The lowest of low.  A DOUCHE BAG!!!!!  My little girl loved him so much as did I, yet he was able to walk away from her without ever even looking back to see how she was doing.  So.......in all honesty, it wasnt a man I fell in love with, it was a boy.  I recently read a blog from a woman I met titled SEPARATING THE MEN FROM THE BOYS.  These were her words to me:  Jess, I have a breast cancer blog about my journey.  I have a post entitled "separating the men from the boys".  You should read it.  To walk out on a woman that has cancer, is one of the lowest, disgusting, forms of immaturity a man can display. But....to walk out on you and your child?? Got to be one of the most selfish things anyone can do.  You are blessed that the lord was protecting you from a lifetime of heartache.  I divorced that type of selfish man after having two, beautiful children with him.  Seven years later, I was sent the most giving, unselfish, man I know.  At 42 years old, he stood by me and watched me have both breasts removed, go bald, gain 60lbs, and give up my business and my income to cancer.  He took care of my kids, my dogs, cooked, cleaned, worked on straight commission, paid all the bills, and never missed a chemo sesssion or doctor's visit.  My husband definately loves me, but I think he loves my girls even more.  I think his biggest fear is losing his relationship with my children if my cancer returns, and takes my earthly life.  If this BOY loved you or your child, he would be there no matter what.  It is only through our hardships that we come to know the true suffering of Jesus.  Imagine how God felt to watch his son tortured and bleeding on the cross.  You probably know this feeling already.  You are strong and will be even stronger.  Plead the blood of Jesus over your angel, ask for her complete healing, and then let go and trust in the lord.  I will pray for you every day,........... Penny.  After reading this, it opened my eyes, and I am in debt to her for that.  Her words rang so true.   DB couldnt even stand by me while I fought for my world, my baby girl, a child whom he claimed was his world as well.  PLEASE.....................GIVE ME A FUCKING BREAK...................................Huge difference between you and a man fuck face.  So, here's to you douche bag, you didnt deserve me, and you definately didnt deserve my daughter.  You were blessed that you were in our presence for as long as you were. 
     Im no longer sad thats he's gone, now im just pissed at the verbal abuse I put myself through everyday for wasting my time on someone so pathetic.  I seriously dont know how people like that sleep at night.  How do you use a 3 year old little girl to get to her mother, and spend so much time with that child, yet never really love them enough to check on the status of there potentially life-threatening disease??  That is so sick to me. Looking back now, im trying to figure out what the real attraction was to begin with.  I did everything for him but wipe his ass, although I bought the toilet paper for him to wipe with cause the cheap ass couldnt drop a dime on something other than himself to save his own life.  I was seriously supporting a second child. Okay, I better stop.  I could go on and on, but for the sake of my readers and saving face, I wont.  If not already asked, every one of you would have the same question: "what the hell were you doing with that piece of shit??"  Sadly, I do not know, but it will never happen again.  A huge "I told you so" from my family and friends is rightly justified in this case.  Even DB's own friends tried to tell me what a POS he was, but my dumb ass would'nt listen.  Im all ears now.........................
     If you havent noticed already, I am extremely hard on myself.  I blame myself for sadie all the time.  How her getting cancer is my fault, I dont know, but in my mind I feel that it is.  Its either mine or God's, and I have those days that I blame god, but then I think of judgement day and I oh-so-sweetly appologize.  So.......therefore, that leaves me.  I didnt do something right, so I did something wrong.  There is no logic behind this, but having someone or something to blame this on, gives a sense of control to an uncontrollable situation.  Everything happens for a reason, so putting reason somewhere is better than wondering what the hell the reason is.  Again, no logic, just peace of mind in a fucked up way.  I thought that I was the only person that thought this way, but after talking to the others on the cancer floor, I realized that we all do it.  Every parent up here thinks, or has thought, that they are responsible for there childs illness.  Sad, but so true.  Of course, like all the other parents, I have my breakdowns, and on those days that sadie is sick or I just cant please her, I try to talk reason with myself.  Outloud, to myself, and then it all magically disappears when from the other room, I hear sadie yell, "mom, are you freakin out again?".   Oh to be a fly on the wall in my home.
     I dont care much for holidays anymore.  It started on mothers day of this year when I woke up in tears, afraid that sadie would not be around for the following mothers day to say, "happy mothers day momma".  Every fucking holiday I feel this way.  I am so grateful to have her on holidays, but I cant help but focus on the, "what if I dont next year".  It sounds so wrong to think that way, but in this situation, its completely normal and unavoidable.  I would rather call off all holidays, so I never have to experience these thoughts again.  Speaking of holidays, and special days, Mikes birthday was yesterday.  Happy Birthday Babe.......Sadie baked him a cake in her easy bake oven.  Of course dad ate it all and loved every bite, didnt you dad?????  Sadie was so proud of herself.  She iced it and put sprinkles on it and everything.  The bulb went out before it was fully cooked, but hey, it was Mikes cake to enjoy no matter what.
     This year has been very rough, and I just want it to be over.  I have suffered a lot of loss.  There have been a lot of deaths around me due to cancer, and ironically, its been since sadie was diagnosed.  When I say loss to cancer, I mean other than the loss we experience at the hospital on the cancer floor. Cancer is all around me and I cant escape it. I lost a very dear friend a couple of months ago whom I still mourn every day.  I watched him fight cancer for years, and in the end it took him.  He was the absolute best pool player I have ever known.  Wherever he was, so was his pool stick.  That pool stick won tons of money and tournaments and now, it belongs to me.  Before he died he told his GF to make sure I got it.  It was his most prized possession.  I miss him so very much.  He told me before he died that if there was such a thing as GOD and guardian angels, then he would watch over sadie and I always, and tell GOD that sadie needs her mom, and mom needs sadie.  Lee Jackson, I will love you always, and I look forward to the day that we meet again.

     Thanks to all for reading.  It was a long one, but I feel relief now that its all said.  If Ive learned anything from these awful obstacles thrown before me, its that life is so short.  In the end, all that petty bulshit that you thought mattered, didnt really mean shit.  If you have family, then you have it all. I once heard that the family you are born to can not be taken, you are stuck with them so to speak, but.........the family that you choose to make is the blessing.  Its no longer a "have to", it then becomes a freedom of choice.  If you have both, then you are one lucky SOB.  Count your blessings everyday, because tomorrow, there might not be as many to count.  Good night to all.  Connie, Aunt C, Mallory, thank you again for watching my awful dogs.  I know they are a huge handful and completely out of control.  Sadie thanks you as well.  We appreciate it more than you know.  

       
 

    

The why's, the what if's, and God

Everyone tells me to keep faith and look to god for comfort and strength. I think this is just what people say when they don't know what to say. The why's and the what ifs in my mind are deafening. What is the reason for this?? Why Sadie?? Why me?? Why would god bless me with the miracle of life and 3 short years later threaten to take it away?? What did Sadie do to deserve this?? Am I the one being punished?? Did I do something wrong?? Is it my fault?? What if I lose her?? What if I can't be strong enough to deal with this?? What if she develops a more serious problem from the treatment?? What if the cancer dies and then comes back?? How is this gonna affect her in the future?? Is there a god?? Does praying even help?? Will she ever feel normal again?? Will life ever be normal again?? I could go on and on, but what's the point?? I don't know the answers, and i may never, but yet they still run through my mind everyday. Eventually, faith becomes shattered, and you go through the motions of life, but your not really there..... A dark cloud takes over and there is no end in sight. When this happens, it's a horrible place to be in and going on everyday becomes a struggle. Happiness is sucked away and hell takes over. Cancer can kill, and It can definitely weaken the soul. Some tell me it can not, but until a day is walked in my shoes, they can not be certain of that. Life is very cruel. Some of us have it all, while others live to struggle, and fight, and experience very few moments of happiness before it is all taken from us, and then what?? That's it?? Is there something beyond what we can see?? If not, why were those people put here to suffer?? I will never have more children. By giving life, you give heartache and death. I would not wish any of this on my worst enemy. Can someone tell me as a mother how I am supposed to deal with this, because I find it intolerable. The initial shock of it wears off for some, but it will never go away for others. It is assumed that everything will be okay, but who can say that for sure?? No one. I am very bitter and rightly so. I have learned alot from this, and all of it I could have done without. I wish it was me. I wish the cancer would have chose me, I wish that god would have bestowed this cruelty on me. Oh wait, I guess in a way he did.