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.