One Year

It has been one year since her eye was removed. I am full of conflicted emotions today. We are lucky she is alive, that the tumor (although it filled 80% of her retina) did not touch her optic nerve (aka, pathway to her brain).

She is fierce, strong, amazing, beautiful, funny, demanding, loving, and more than I can properly put into words. I love you, my sweet baby girl.

Anger

Yes, I still hold onto the anger at the Dr. who missed the tumor in my daughter's eye. It was right there. We PAY you to do your job. Your job was to examine my baby. ALL of my baby. That tumor would have been seen when she was 3 months old (considering we have photos of it at one month). Her eye could have been saved, her life not AS threatened, if only you picked up your ophthalmoloscope and dimmed the lights to naturally dilate the eyes. Perhaps even once mentioned that it is a good idea to get a 6 month old baby's eyes checked by a pediatric optometrist. But no, you did none of that.

I question why I still have friends who know all we have been through that STILL see this Dr. She and her whole group (since we were there tons and saw different Drs and nurses) missed the TUMOR in my baby's eye. (of course it is not visible with the naked eye which is why you are provided with the instrument. It isn't a dust collector. USE IT!!!!!!)

Someday, when I can think more rationally, Dr. M. You will get a nice little letter from me.

"oh sh*t"

Scenario: Me, making dinner, a new recipe I have never made before, multi-tasking. I am draining my pasta and realize that I was suppose to reserve some of the pasta water. Rowan is sitting on her booster in her chair in the kitchen with me.

Me: (flustered) Oh shit!

My daughter: (big smile) Oh shit!!!!!

She said it loud, clear and was so proud of herself for getting that one right. I couldn't help but smile-that is my kid alright :)

...another attempt

...at giving her milk. (It has been months, so I thought I would try.)

Scene: Kitchen table, lunchtime, grilled cheese and chips on her plate. I place the opaque sippy cup next to her.

My daughter: (sips the glass)

Me: (look at her and smile)

My daughter: What's that? (points to cup)

Me: (slight pause) Milk

My daughter: (picks up cup) NO! (throws cup at me)

Help, seriously, help

Any of you guys sometimes just feel really stupid? I feel really stupid most of the time now. I have trouble saying words, pronouncing almost everything and just thinking quickly on my feet. I don't know what my problem is anymore, but I feel like such a dunce meeting new people cause I can't hardly remember things just said to me 5 minutes previously....It would suck if I have early Alzheimer's....But honestly, I think that is the way I have been feeling. I am pretty sure it is just cause my brain is a muscle that isn't being put to use....

help?!

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.

down time

So when you are dealing with cancer and you are on this side of it (post treatment), time is measured by tests and exams. We are currently in "down time" and it is the longest down time we have had since Rowan was diagnosed. She is doing SOOO well too. All steps are going "ahead" for her! She doesn't even need to go back for an EUA until after her birthday (August 20th), well eight days after, but maybe we can actually celebrate her second birthday with friends and family instead of in a hospital. Last summer, she received her first cycle of chemotherapy on her first birthday. That was the worst day of my life and I am so happy she probably has no recollection of it. This year will be so different. I will reflect on her birth, her trials, her battle, her awesomeness and party party party! Nothing will be held back or held down this birthday. I am already trying to figure out how to make a Winnie the Pooh cake..there must be a mould somewhere...

Oh and she said, "dinosaur" yesterday...her first 3 syllable word.

Friend Coming today!

A close friend of mine is making the trek down to Florida today for a 5 day stay! I cannot wait to see a familiar face. Moving is really hard and finding/making friends at this age is even harder. She is one of those people I can have a good time with even when we are just watching TV. I love her with all my heart. She was always there to listen to me and hear me cry through all of my daughter's treatments which isn't an easy thing to do, esp. when you single (as she was at the time...since then, she got herself hitched), hip, and really probably could have been doing something better than listening to me. Alicia, I love you!

My last post

I wonder if my friends Dr. read it because they drew her daughter's blood and got the results immediately!!!! She is fine! It was just a fluke first reading which I knew could happen. I love hearing good news :)

Childhood cancer

Sucks. I don't know why there should even be a thing and if I hear one more person tell me, "Well things happen for a reason," I will seriously go off on them. My kid didn't get cancer for a reason! F-you. No kid should have to get cancer...no kid should go through chemo, radiation, enucleations, brain surgery, spinal taps, MRIs, CT scans, blood transfusions, never ending nausea, weekly hospital stays, and all the rest that comes with cancer. We are lucky that off all the cancers my daughter had retinoblastoma that has a 90% survival rate in the US/Great Britain and all other developed countries (30% in most of the world)....

To doctors: When something is wrong with my kid, I usually know it, as do most parents...when something is off, try listening to what a parent has to say. If you order tests, please do so with urgency as parents don't like to wait for results....(well I guess no one does), but seriously...call a parent back that night if the results come in late...schedule tests for early so they might be in by that night.

I had a girlfriend tell me that she became a much better Dr. when she became a mom...Its true though...so try to put yourselves in our shoes.

I am writing this cause I am worried about a friend of mine and her daughter. They have become very dear to me, but are going through a rough time. I just wish I could speed up the clock for them so they have some answers...I am not much of a prayer, but they will be in my thoughts.

Not so good at this

blogging thing. I am bored today..inside, don't know why I don't go out other than we have no money and it is HOT...welcome to summer time in Florida. Rowan is bored, but being a good sport about it...I just got a huge cuddly hug :). SO since last time, she had her EUA. It went well-still no tumors in her right eye. Dr. Murray doesn't feel the need to see her again until August. I am relieved, but nervous about that. I trust him as he is one of the best though. Her prosthesis report what not as good...it needed work. We went to Orlando a couple of weeks ago for that. The eye was thinned out, added to and thickened in some areas. For some reason, it looks not as good to me two weeks later...We go back to Orlando in July and I am pretty sure she will be getting a new custom one in September..or at least the mold will be cast then. She is growing incredible quick and still doesn't cease to amaze me. She is so smart and learning quickly. She now knows the cancer center is a friendly fun place which makes me happy. She loves it there. Don't know what we would do without them...I hope to get in their SOAR program soon for survivors, even though we are not out of the woods until she is 7 (?) and then there are always the high risk to other cancers we will have to worry about her whole life...

Anyway...Things are good. If you are in the FL area and can check this out:

Mandy's fair

Via her mom's blog.

Present and short term future

Going out lots lately. I feel I've been too careless with my daughter. I need to take more caution and leave when I hear coughs or sniffles even if I know that person and they say their kid "isn't contagious." Before cancer, I wanted her to get exposed to build up her immunities...now....I just want to stay out of the hospital. Is it too early to be counting the days down to January? I guess-her next EUA is Friday. My emotions are all conflicted about this weekend. There is dread about the actual trip/car rides and hotel stays..there is excitement about meeting a long time friend finally face to face! I hope I suppress my dread in order to have fun with D, C and R.

faces

Putting up fronts and switching faces, walking on eggshells. When will this pass?

Feeling Alone

Parents leave Sunday. I need friends. Its hard when the last year of my life has revolved around getting cancer out of my baby. I make people uncomfortable which makes me feel uncomfortable. I don't think the first moms group is going to work out well, but I will try. I really miss our friends in CT and MA. ANyway, so when my rents leave, I am alone with my daughter (My husband is too much in WoW to be considered "here".)

A woman asked me the other day as our children played together, "what do you like to do for fun?" Seems like a normal question. I gave her the most blank stare. I came home and talked with my husband about it. He doesn't even know what I like to do for fun. I thought more. Then found it was an easy question. I love to walk, bird watch, see new things, read maps (oddly enough), go new places, be outside, garden, plant things (reminds me I have to buy some herbs! and another pot), even if it is a new neighborhood. I love museums, but with my daughter I don't know if I could enjoy them as much. Anyway, so now I know what to say if anyone every asks me again.

Next visitor come in June. :(

Ignorant People

I don't know why I let them bother me. Why do I let their uneducated comments get under my skin? Why do I want to punch out a woman I have never met for a stupid comment she posted on an article online? I sent her an e-mail. It probably won't be read. I told her I was offended by her comment that greatly lacked research on her part. I will update if I get a response from her. Perhaps I will even publish the correspondence for all (lol, like who really reads this other than me) to see. I am sure I am over reacting.

The results...

Everything came out fine!!!!!! Of course the Dr. took his time to look at the scans (I can't even get into this...), but the news is good. My daughter is cancer free!!!!!!!!!! I feel like I can breath with a smile now, at least until May....

MRI done

Now we wait.

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!

Busy Good last week!

My friend and her son came for a visit from MA. It was awesome! I haven't seen any of my old friends since last.........April, yes it was April. My husband hasn't seen anyone since last two Thanksgivings ago-it was so great and busy. Now that our daughter is out of chemo and fairing well (levels are normal, even with the port), we can DO things! Doing things is great. We first went to the aquarium. It is a great aquarium and our second visit. I am not thinking that she may be a tad too young to appreciate the experience. Then we went to the Lowry Park Zoo. This I LOVED. She liked it too and it wasn't so crowded that I felt nervous putting her down and letting her walk. We are going to do this again while Nana and Papa are here next week. Lastly, we went to WDW. It was nice and I am all over it now. Shocking! I know, it is sexist and racist, etc, but who can't buy into their wonderful marketing? Okay, it was my daughter's wave and excited yelling, "Hiah, Mickey!" at the parade that really got me. She also was obsessed with the Pooh ride (well maybe not the ride-more the giant picture of Pooh outside of the ride. "Hiah Pooh!" She melts my heart and along with it my hatred of all things Disney. That was a super long day that started off with her vomiting in the car, but it ending on a high note with two kids on sugar highs crashing to comas after a delicious take out meal.


So Nana and Papa are here next week!!!! I love having all these visitors, it really has been way too long. My husband and I are going to escape for a much needed "adult" break. Our first us time since our daughter has been born. My husband has been away, but not me. No more excuses and Nana is dying to watch her for a few days all by herself. I guess I have some control issues, but I am SOOOOOOO ready. My first overnight without my baby! We will be close enough by incase there is an eye emergency, so coming back to fix it will not ruin our vacation.



Speaking of eyes. She gets her custom eye Thursday. This month has flown by! I can't wait to see it! Another busy week passes and another busy week will begin. We are going to the Children's Cancer Center tomorrow, Orlando Thursday...Okay, so that is it, but both are good for their own reasons.

Her MRI is on St. Patty's Day. I hope that means good luck. I am nervous, although all things point to good news. Everything is just another hurdle...If we can just get through the chemo, if we can just get past the enucleation, if we can just get past the last three chemos, her first EUA post chemo......One step at a time.....

Girls Day Out

SOOOOO much needed. My husband stayed home with our daughter while we took a trip to the outlet mall. I bought a pair of jeans, bras, and some casual t-shirts. All very much needed. I even managed to stick to my diet. It would be great to fit into some of my pre-cancer clothes again! I am waiting to pick up my friend Em and her son Johnathan from the airport. A busy next couple of days, but it will be good for me. I realized late today, we really don't have much food in the house, so I am winging it. We do have coffee at least!

I am excited to see our daughter play with another kid (okay, this always thrills me and she learns so much from them). J is almost 3-so I hope she learns tons, esp. in the language category.

I also ran for 38 minutes tonight. It felt good and I haven't been doing as much running as usual. Trying to be more family oriented at night...yada yada. I need the run. Today has been a great day. Will be exhausted tomorrow, but happy!

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....

White Poop scare

So yesterday I change our daughter, nothing out of the ordinary until I look in her diaper and see strange white poop. Hmmm, That is odd, I tell my husband-he agrees it is odd. Must be something she ate, I toss the diaper and get her in the car to go to the Drs. She has that EUA on Friday and needs her clearance for anesthesia. Have a list (of course in my head-I need to learn to write things down!) of questions to ask he Dr. Amazingly enough, I remember them all. None of them involve white poop.

Fastforward to the end of the day. 8pm:

Me: "You get this one, whoa, stinky."
Husband: " Yes dear."

A few minutes later. He calls out.

Husband: "Odd this one is white again. Do you want me to save it so you can see?"
Me: "Okay, I guess, I think I am going to google it."

So I google "white poop." Seriously frightening. Everything says call Dr. immediately. I fret. I stress, I finally call the pediatrician we just saw earlier that day. I feel like an idiot for calling over poop. (esp since there is no blood this time!) Says it is probably just an enzyme, not to worry about it now, but keep an eye on it. She obviously hasn't googled "white poop." I said okay then and continued to worry.

Morning now. Poop. brown. Good. Doc was right. I wish I could learn not to stress. Cancer I guess changes things. Chemo changes things. I don't think I would have stressed if she didn't have cancer or the big bad chemo drugs. Kids poop-that is what they do. Will this feeling of dread over all unusual ever end?

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!!!!!

Running

So I have been doing fairly well with running. Lately, however, it feels like the first half of my run is great-beyond my expectations, then I crash. I can't figure it out. Yesterday, it was shear exhaustion (my first 630 am run, I figured). Today I ran at noon. I had a headache earlier, took Motrin, but it didn't go away and seemed to get worse as I ran. Dehydration maybe (although I did drink at least 2 large glasses of water this morning....).

So I am back to running at 7 pm. It seems to be what works for me and it also keeps my eating in check for the day. Running after dinner, not the best, but I usually eat a smaller portion that way. I wonder if I will push the time later as it gets hotter here. I am not really running for any reason other than health, and maybe running a 5K to raise funds for children's cancer research...(in my way future). I don't seem to be losing any weight though and I want those extra 10 "cancer" pounds to go away (weight I gained since my daughter's diagnosis) I decided to do some Gilad again. His Body sculpting series after 20-25 minutes of running...I am not sure where I am going to fit him in yet. Definitely my days "off" (which technically should be tomorrow, but I am going to try to a real run tomorrow evening instead of this crap I have been doing).

So there. I am really trying to eat well, run well, etc. I hope that next Friday's visit to Miami doesn't make me lose my motivation. It seems to have that effect. EUA post chemo-I am nervous, terrified, want to hear "all clear," get her push of hep, then get the hell out of that nasty, dirty, gross city.

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.

Melodramatic

Okay, so I guess I was a bit melodramatic yesterday. Today is a new day and thanks to living in Florida, it is beautiful out. I got myself some new running shoes today and am eager to try them out. My last run was so disappointing, I think change will be good. That plus my old running shoes were over 2 years old and falling apart.

We also visited Dad today at work. Got to show off our daughter to some folks he works with. She really knows how to work a crowd. She got overtired though and fell asleep on the way home. I am still waiting for her to finally nod off. I will start dinner after this post. I have been planning on making this meal for quite a while now. Oh well. today is the day.

If I have time, I will start painting. I traced the drawing (I am lazy and drawing always takes considerable time for me.) It is my first human painting since I can remember, so I am not sure how it is going to turn out. There is also a dog in it (of course!) If this comes out well, perhaps I will have to do one with Rowan and the fur kids. We will see. Perhaps I should start to actually paint for a living (at home.) Now I am just trying to get back into the swing. Hopefully morning runs will lead to more productive days for me. Only time will tell (oh and a morning run-hope to start that tomorrow.) Working on getting out of this rut.

I take suggestions if there is anyone out there reading this.

BTW-My daughter goes back to the ocularist tomorrow. I hope there is something done about the constant struggle we are having with her eye. Grr.

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.