full of bull shit

Ok, so I am not okay with this. I know this is what we have to do, but really, I am freaked out. How did we win the Rb lottery?! I didn't sleep at all last night and I am on the verge of tears non stop now. Rowan trusts us and although, we are making the right decision, her eye or her life, I feel guilty handing her over, scared to a bunch of strangers to remove her eye. She has such beautiful eyes too. This sucks.

Enucleation

So, I am trying to make myself come to terms with this. It has been easy to deal thus far because my daughter hasn't let three rounds of chemo slow her down at all. She has shot up 2-3 inches, learned to walk and run, gotten 4 more teeth, and learned at least 3 more words. She has been inspirational and through all of this. There is no way I would or could be as strong and full of life as she has been these last 3 months.

So this month, her cancer becomes real. She will have her eye removed this Friday. I am trying not to think of it as them taking away a perfect piece of my baby girl. What we gave her isn't perfect, it is poison. I am terrified and anxious. I don't feel prepared, but who can ever be prepared. I keep reminding myself that she will be free of this cancer after Friday. Yes, she will still have three rounds of chemo and a life time of exams under anesthesia AND prothesis fittings, adjustments, etc. I fear for it all. This is truly diving into the unknown for us.

Someday, I may be able to look at this experience and think, "it has just made us stronger." For now, I cannot even think that way. I know I am lucky to have a sound marriage, an amazing baby and a supportive family. WIthout those things, I would be lost.

Round 3 here we come

Or at least we hope. We still have one more blood test. Seems her levels dropped late this time, so there was a little scare. She has been acting and seeming fine though. Right now she is munching on some Gerber cheese curls. She loves them, but it is kind of gross to watch. She has been wonderful after Round 2. She has a little scabby looking area on her head under her hair that we will have the Dr. look at and she got a yeast infection (or what I thought might be one-we just called the pediatrician on this one) that has cleared up after a day on her yeast infection meds.

Things she loves to do. Run, get chased, pull all of our tupperware out of the cabinet (now I see the need for childproofed cabinets), mush her duck either by sitting on it or belly flop, read, be read to, sing and dance. Also she exclaims "da da!" when every her enters a room. Its cute, but it would be cuter if it were "mama!"

calm after and before the next storm

My daughter is doing great! She is teething something fierce and keeps bumping up to a temp of 99.something...just below a hospital visit. Nana has been staying with us, but left this morning. She is going to miss her Nana dearly! I am going to miss her dearly. I have used having her as an excuse to do NOTHING! I think it is starting to depress me, along with the 5 extra pounds I am carrying! I am going to start walking our daughter after her morning nap to get out of the house and get some exercise. I am doing Gilad on most days (not today), but I prefer the outdoors. Hopefully the FL heat/sun factor will be a plus in the months to come. It is still so damn hot during the day!

Round 2

Round 2 seems to be going better than round one. My daughter is kicking cancer's ass. The tumor has shrunk down 50%. Dr. Murray was excited to tell us the news. I could tell even though he still didn't that a breath when talking to us. I am impressed with our daughters spunk. The hospital doesn't seem as bad this time either. We have roommates, but they are quiet and it doesn't seem to hinder her sleeping...she is sleeping, so that is very good. I am very hopeful we will get to go home tomorrow before noon if not right around then. The Dr. has to make her rounds, so I hope she does it quickly. We have the zofran at home this time, so we can give it to her before she goes to bed. AND Nana and Papa will be there and so happy to see is as well as Molly and Zizek for a special greeting.

5 Days Left

We have five day until we return to Miami. I am dreading this, but look forward to blasting her cancer once again. I am nervous about the eye and that it has started to drift inward. I am nervous about the drive out there, we are going to try to turn you around, like a big girl.

You are currently pulling all your books off the shelf and I am typing this knowing you must go in for your nap now. You have settled on your Dog book. You love dogs.

Well time to play Moomy.

Life During Chemo treatment

So, life does return back to normal in between Chemo treatments. Baby girl got an infection after her first chemo treatment, and that landed us back in a hospital. At least this one was close to home. Grandma came because I needed my mother. That was nice. Since we have been home, life has been good. She is running now! She is such a ham. She hides behind the counter in the kitchen and plays peek-a-boo with me. When she gets tired, she just turns her head, but it still cracks her (and me) up. We had Inside Edition folks here last week. They air the episode tonight. I hope it comes out well and that my goal comes across. Get your baby's eyes checked! Well, I feel like I was the last to know, but I know I am not. I love you my sweet baby girl.

1 day to C day

Cancer really sucks. I am scared and anxious and angry. Yes angry. I am angry that it wasn't noticed months sooner. Chances are my daughter was blind at 8 or 9 months (now that we know what to look for in the photos). She definitely was blind at her last well baby visit. I wish I had caught it sooner. I am usually so good at knowing when things are not right. I missed this one. Maybe that is why I am angry. Anyway, I think I make it a mission to get thorough eye exams a standard part of wellness visits (as I am told by a pediactric friend are, but apparently not). Anyway, so we are in Miami now. We leave to go to the hospital just to meet the oncologist around 11. Then I am sure we will wait a few hours. Then we come back to the hotel and prepare for tomorrow. I can't wait for this to all be over with and we are only starting this process. At least tonight we will get one last night of baby girl pre chemo. Of course we haven't had our first experience yet, but I think it is safe to say, CHEMO SUCKS. CANCER SUCKS.

Cancer

No matter how I write it, say it, read it-it all doesn't seem real. Baby girl has Retinoblastoma. It sucks to be that parent. The one that you say wow that sucks to be that parent, then you find yourself as that parent. It sucks more than I could have ever imagined. They say it is contained...two days to wait...will it still be contained? I want to hold her 24/7 and of course that is ridiculous, she won't allow that anymore. This is all I can write now.

swimming

That is right, she wants to swim. She doesn't want or feel the need to have her mom hold her. I do, of course. She does think that water is for drinking and it has more chlorine in it than any pool I have ever been in-which is a good thing. I got bare butt pictures of her today before her bath-that was after pool time. I can't wait put them in her yearbook. I am that kind of mom.

Whoops

Didn't do a thing about my resume today. My daughter and I went swimming after the ADT guy came and set up our alarm.
Now I wonder if we even need this alarm. And of course we had to pay to get a new box installed....Yup. Of course we had to pay.

Something fun and unexpected-our old mortgage company actually sent us a check! Seriously! They owed us money! When does that ever happen. I am suspect, but will cash it anyway (we need the money).

Its Time

For me to get a job. I wanted to be one of those stay at home moms and be happy, but I am not built for it. Don't get me wrong, I love my daughter, but I feel lazy staying at home all day. I need to be writing my resume right now, but here I am blogging. I am sad to leave my life in the theatre. While in it, all I wanted to be was out-now I miss it. I am going to do more for me, "us" painting...pricing out paints already. Any requests? I paint large scale...I guess that is how we will be setting up our lanai, as my paint studio. I am too messy to paint large scale in the house....

Attack of the Killer Frogs

So this whole wild life thing is new to me. I thought Indiana had lots of bugs, but really, FL has scary frogs. They come out at night and adhere to your home and front door. I have had one jump on my hand, but my experience this morning was the most horrific. Of course this is all happening in the dark and this morning I was hung over and exhausted on top of that. Ok. my daughter wakes up, dogs wake up...most "walk" dogs because we have no fence, so I choose to do this without my daughter this morning as she isn't crying too hard and it was obvious Molly had to go. I open the door, the frog jumps from above me onto my head and in the house. I scream (not the high pitched scream, but a low "ahhh" It is what come naturally when I am scared shitless.) I then stand there with my dog very excited large dogs and watch the frog in the house. Is is poisonous? I don't know. Dogs pee, I bring them in and immediately shove them on our bedroom with my sleeping husband. I shut the door. I get Rowan. She is crying, I need to feed her. So I sit down in the living room. I can hear the frog jumping all over the dining room. I then see it scaling the walls. This is too much for me. My daughter finishes, I wake up my husband. I need help. I can't have her crawling around with a frog jumping all over the place....

So he gets up (way early for him) and manages to get the frog outside. My hero...by the way, he also does bats....

Wow-day three

This will slow down when I get a job, or a friend. Today was a good day over all. We did more organizing in the bedroom. Exciting. Still no show from baby girls monitor. We took a bath together...she went completely under when I was washing my face. oops. She swallowed a bunch of water-yes drowning can happen in a matter of seconds, but luckily, I was there and she was fine. My bad-totally on my watch. Dad can blame me for that repressed memory she will have.

Day two

Florida is hot. Rowan is hot and teething. Not a fun combination.

The produce here is great. We get great peaches, cherries (weird), bananas (Rowan actually likes these), etc. Tomorrow we will try "florida avocados," with our taco lasagna. Rowan loves avocados. Me too.

Today we go into Marc's work. I look forward to seeing where the magic will happen.

For my daughter

I decided to make this blog for my baby girl.  Perhaps it will live forever for her to read at a later date, or not.  I will think of it as a diary of sorts, written for her.  My myspace blog is my diary about my pregnancy, but since I no longer really use that, I figured I would start a blog about life with my daughter today. I am not sure how often I will write. This may be the only one....I am not good at following through.

We made it to Florida from Indiana. My daughter now officially hates the car. She screams when the car is in eye sight now. Some may think it is endearing or even cute. No it is not. We love you, baby girl, but you do have a set of lungs. Since day one. That is a good thing since her monitor base is lost in the move. I still have high hopes of finding it, but I am probably being foolish.

Things we have learned during this move process:

1) Baby girl is better when mommy isn't around. She plays quietly, she enjoys exploring, she laughs and giggles. When mommy is around, she climbs my leg and screams until I pick her up. I cannot just join her on the floor, no I must pick her up. Daddy then gets angry when Mommy picks her up. I can't win.

2) Baby girl hates cars now.

3) The only word she says, that we recognize as a word and that she knows the meaning to, is "dog." She usually says this with a pointed finger. This is cute.

4) She loves loud music and even is she is cranky, she will turn on her groove thing.

Well Baby Girl is now awake. I must go get her to ensure that she doesn't get out of the crib cranky.