EUA time

EUA is on Friday, but we are leaving for the trip tomorrow after her 3 year old appt. and pediatric clearance for anesthesia. Things that concern me this time are 1) her socket development-we have been getting bad reports since January (and are getting another opinion in a couple of weeks) 2) her complaints that she can't see things (when they are right in front of her) and that she can't see well. I am not sure if she is learning the latter this from another kid at school or if she is for real. Quite honestly, it scares the crap out of me.

Mission: Remove Eye and other things

Since my daughter has been to the ocularist, she has been blinking her eye tons. I decided since all the lub. ointments don't seem to be helping that I should take out the eye and clean it. This was the first time I have had to do this since she got her custom eye. (before that it just sort of fell out). Well the first try, I was very unsuccessful. She was good (she does my eye while I do her eye and makes it more of a game), but I just couldn't get it. When I started to tear up and get frustrated, I let it go. The next day was beach day anyway. So I HAD to do it. SHe again was very good. I got it on my second try! YAY. Cleaned it very well then put it back in NO problems. Then she went off to play and I just stood there and started crying. It was a successful venture, but everything we just went through this past year hit me like a ton of bricks.

We are nearing the anniversary of her diagnosis and her first cycle of chemo, all this coupled with her birthday last year. Her first birthday. The day I just wanted to reflect back on her birth and how much her being with us means to me. Instead I woke up earlier than early for her first surgery (port), then held her down as she kicked like hell as the nurse injected her with the poison that was going to help kill her tumor. This year...I am going to try to reflect on how lucky we are that she is still with us and some of the better parts of this past year as well as try not to dwell on all that went with her cancer.

MRI and other things

At last the date is here, well tomorrow morning to be exact. I am very nervous. What if they find something? That question pops in my head for every EUA, blood test, Dr. visit, etc now. Once zapped by the cancer gun, there is no going back. No more innocence of motherhood. It is the gray cloud that hovers near by. So what if they find something? Well we take it from there I guess.

Other news: My husband is finally home, yay! The in-laws are in for 11 days, yay! AND I am finally going to spend my first night away from my daughter ever, when my husband and I take our getaway. I look forward to it, but am still nervous. I hope my daughter sleeps fine for Nana and Papa!

Cancer 15 and gray hair

Okay, so we were going to see some old family friends today. I put my daughter in a really cute dress and I was going to wear something as well. Try on dress #1-fits, but I need a strapless bra, next dress. #2, can't get it over my hips, okay, pretty sure that is how I used to get this dress on, fit over head, zipper isn't close to closing. #3, fits zipped, wait a minute, I see my arm pit fat. I want to now burn dress #3. Arm pit fat is the worst. I have officially gained what I call the "cancer 15." Similar to the freshman 15, these 15 pounds have been adding up over the course of the past 6 months since my daughter's diagnosis. I know I am making bad food decisions. I know it. I don't know why I am doing it. I love veggies and fruit, I am just not eating them. I am even making them for her, so what is wrong with me. I am making a pact with myself that I will start eating better from now on and continue with my running and exercising...taking her out for walks, taking the dogs out, etc. This not working thing is killing me. Weight was never an issue while I worked. Grrr.

Now, for gray hairs. These are also new since my daughter's diagnosis. THese I am enjoying. I like that I have white hairs growing from my temples (okay, just my right temple). These are war wounds. Yes, she ultimately fought the cancer but we did to. We were there with her, not sleeping, holding, consoling, etc. Her pain was our pain, her fight was also our fight. I will not dye my hair for at least another 6 months or until the novelty of my new gray wears off.

Oh and I guess we had a really really great week. I got sunburnt in February!

Friday's EUA

We were in for her first EUA post Chemo last Friday. I was really really nervous for many reasons, but here are the real 2:

1) It was just me and my daughter this time. Dad stayed home so he could "work." I hope those quotes don't really need to be there.
2) Dr. Murray was going to tell me she has tumors in her right eye now and I would have to digest that by myself.

Well there were NO tumors in her right eye!!!! We don't have to be back until May 8th! That is about 10 weeks! It is really really great news.

So overall the trip was great. Can't beat cancer free. I was exhausted as our daughter just screamed all night long in the hotel. I am thinking of just driving out at 2:30am for next time....It would be the same amount of sleep, but I will have coffee in the morning....

Nothing New

Just nervous about this weekend (well Friday's EUA). Seems like her "birthdays" (18 months) all seem to bring life altering events. The first bringing her first cycle of chemo. Not my choice, but a hurricane made it that way. SO I guess that is the way it was meant to be. This time my daughter and I are doing it alone. I don't want it that way, but my husband has to work on his dissertation. HE HAS TO WORK ON HIS DISSERTATION!!!! No really, we really really need and want for him to get it done. I am nervous about 4 hours in a car with my daughter by myself. Grrrrrr. Think I will pack snacks and of course lollipops for the desperate times.

One more day to enjoy before "reality of cancer" hits us again.

BTW-she is doing GREAT post chemo-50% for everything! Her weight is climbing back up which is a great relief. She had dipped a little low for a while and is now gaining again!

Now if only I can get her to nap!!!!!

Oh well

So she woke up with the eye in the right position, but moved it while cranky in the car.

On another note, and maybe I will write more on at a later date. I think there should be a club for depressed stay at home moms who feel their lives have turned to shit even though they get great enjoyment out of watching their children grow and learn.

Also, why is it, that I get no credit for the wonderful child our daughter is becoming?!

Eye update

So less then 24 hours has past and so far so good. She woke from her night sleep with it in the right position. The BIG test is nap time. She has been sleeping for 3 hours almost and I have to wake her up thanks to a stupid policy that you can't pay off your car online. Damn-now I have to go to post office and have it mailed overnight or something ridiculous like that.Grrr.

Well I am off to gently wake her up!

Eye news

We just got back from the ocularist. I arrived a bit late due to my remembering the time it take to go to Orlando incorrectly (1.5 hours!) It took me 1.25, so I was only 15 minutes late and they were not ready for her anyway. Normally he only spends 5 minutes with us.

My daughter screamed of course...it is hard to watch and be a part of, but I think we (My husband-who wasn't there today, and I) are getting used it. We know it does NOT hurt her, but it might be misinterpreted that way. I hope they don't put that spin on it. My daughter just gets scared when people hold her down and go for her face. Wouldn't you?! I would be and I have both my eyes and haven't been through a fraction of the things she has gone through this past year (and she isn't even 2 yet!)

So they added a bit to the top of her prosthetic and we hope that helps with the rotation problem we are having. Grrr. I sure hope it does...we will find out tomorrow morning.

Where we are now and now what?

I feel inspired to write another post after meeting two mom's who keep blogs at the Children's Cancer Center in Tampa, Florida. Of course, they are both better writers and have wicked senses of humor despite their own cancer fights with their girls.

So here we are. Done??? Perhaps, but obviously not done. The worst of it is over. She is most likely cancer free (although I really want to wait until the MRI to announce that officially). The MRI is in March. She has her next EUA in a couple of weeks and goes back to the ocularist this Thursday. I hope something happens there so she can't flip her prosthesis or take it out as easily as she does now. I hate having to fight her to put it back in. She is doing well though and each day she gets better, stronger, more defiant....

As for me. Well, I am depressed. I feel useless and just worthless and I am getting fat. I don't feel like a good mom or person most of the time, despite what everyone tells me. I am also stuck on a few words my husband said to me during a fight in December that hurt me more than he will ever know even though he apologized for them. I have done the whole "seeing someone" in the past, but I know I am the only one who can pull myself out of this. My daughter keeps me going for now, I seem to forget myself when she is around which is great. I guess, I know, the issues lie with me. I blame myself for her cancer, either my work, or my genes. Obviously, I didn't do this on purpose, but....it doesn't stop me from blaming myself.

So real upper. I also feel lucky that my daughter's general prognosis is good, really lucky. I fear for her. I see she is developing issues already with depth perception. Don't know where to go on that one.

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!"

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.

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.