Wednesday, December 29, 2010

Bar Hopping

So, the big question is: did Santa bring Eve purple?

Sure. But he was very uncreative and brought her a purple skirt. So, yeah, sorry for that anti-climax, but he just couldn't figure out what the heck purple was. Doesn't seem to matter too much since her prize present has been the new Pinkalicious dress. Go figure.

Friday, December 24, 2010

The Graduate

Sometimes we get pictures taken so I can look back and pretend we're a normal family. I'm totally digging that no one asks why we gave Eve a Charlie Brown haircut anymore. I'm going to make normal my beetch!


Friday, December 17, 2010

Do these spandex biker shorts make my LA Gears look big?

Last Wednesday, after I got over myself in front of a large group of people, Matt and I took the kids out to see Toy Story 3 Disney on Ice. We went last year but this time we got to bring Eve with us. You know, because we let her out of the bubble this Christmas. Even though she and Natalie couldn't sit still and I was ready to go before intermission, it was still nice to be miserable as a family. I'm sure the person who got hit in the head with Eve's Dum Dum was ready for us to leave, too.

Tuesday, December 14, 2010

BC, AD, and the COG

The following is a speech I delivered last week at a Casino Night fundraiser for CureSearch. I had to face my fear of public speaking head on, but the message is bigger and more important than my fear. As you read this, you can pretend you were there if you just imagine Eve running across the stage and leaping off, in between pulling on my arm saying, "Mommy! Mommmmmmmy!" You can get away with a lot, apparently, if you have some cool scars.

I was invited to speak by Sammy Keziah, father to Sam, who lost his life to Wilms four years ago. I appreciate him having us and not getting upset while Eve and Daniel played American Galdiators while he was speaking.

My name is Eve's mom, but I also answer to Christy.

Thursday, December 9, 2010

Frst Plas

Eve was a good helper for our Christmas Cookie Swap. There was lots to cook and she rose to the challenge. (Although she did eat half of the pigs in a slanket before the party started.)


Friday, December 3, 2010

The O-Face

9 blocks of cream cheese in the fridge?

Someone's having a Christmas party.

We've got enough cream cheese and bacon to make Paula Deen make her O-face. And why shouldn't we? There was no party last year. There was only ketamine and uncertainty and Clorox wipes.

Sunday, November 28, 2010

Stupid is as Stupid Does Dart into Traffic.

What should I do with Eve's port?

16% of you said Turn it into a necklace.
51% of you said Turn it into a Christmas ornament.
33% of you said Turn it into a pull-chain for a ceiling fan.

Monday, November 22, 2010

Town Crier

I guess our trip was so exciting that it's taken me a whole week to process it all and document it here. I'm going to go with the abridged version here. In fact, I don't think I could even do an unabridged version because the first half of the symposium was like a 747; now that I was on the ground, it was way over my head.

Tuesday, November 16, 2010

The Jetlagged

I only told you that I might have boughten one of those SkyMall items to get you to come back. I didn't. But we totally bought three nurse pens with "Los Angeles" written on them for the children as souvenirs. Although we haven't given them to the kids yet. I just don't know if I can part with a writing untensil that has five different colors all in one pen.

Monday, November 15, 2010

The Jetsons

It's been a while since our last chat. And by chat, I mean I'm basically the world's worst listener, so I appreciate you coming back. I know sometimes you can barely get a word in edgewise.

But in all seriousness, back to me.

Saturday, November 6, 2010

The Heartburn, Pt. 2

I think I know what my problem is.

I do fine with CT scans; it's the ultrasounds that put me in a rocking chair staring blankly ahead.

Wednesday, November 3, 2010

The Heartburn

Lately, lots of things have been giving me heartburn.

(I will not change my eating habits, no siree. I will eat generic Tums all the live long day.)

Monday, November 1, 2010

Candy Karma

Exactly one year ago, Eve was home after her first chemo treatment and very constipated from the vincristine.


Tuesday, October 26, 2010

Does this backpack make my butt look big?

First order of business: dishwasher is repaired. The repairman showed up within the service window, had the part we needed, and fixed it. And turns out he works for Sears.

But the best part was being told that I need to give him all 5's on the customer service survey. That's like showing me an ink blot and telling me to say, "That's me smiling with my new, beautiful, and in good repair Kenmore appliance!"

Monday, October 25, 2010

Work hard, play hard.

We worked hard for a while. Time to go back to the fair on Mission EAT.

The free juice from the Ocean Spray people is always a highlight. I mean, it's free juice!

Sunday, October 24, 2010

Spilt Milk

Natalie spent her last morning of track-out at her alma mater, Sunrise Preschool, telling this year's new senior class all about kindergarten.


Wednesday, October 20, 2010

The Littlest Ballerina

The thing I love about kids is, they don't care if they've had a "procedure" in the operating room last week. As an adult, we'd probably milk it a little more. But Eve is just happy to be doing something closer to normal...whatever that word means.

Wednesday, October 13, 2010

Eve gets deported.

We love our surgeon at Duke so much, we decided we were long overdue for another procedure. Time to haul ass to the hospital. I live for this stuff!

7:45 a.m.
Leave house. Encourage Eve to drink as much protein-infused Gatorade as possible on the first leg of the ride with hopes of dulling NPO-ness throughout the morning.

Thursday, October 7, 2010

Wednesday, October 6, 2010

Dr. Eyelove or: How I Learned to Stop Worrying and Love the Patch

Today I was pleasantly surprised by how well my children behaved at Daniel's eye doctor appointment, especially since it was Eve's naptime. (It seems they saved their impiness (is that a word? (ooh, parentheses inside of parentheses inside of parentheses...crap, what was my original thought?)) all for me at home.) The good news is that the one-eyed wonder is improving at warp speed; just two months after wearing the patch, his weak eye can see two full lines further down on the eye chart. So, we'll trod on through the new year with Captain Feathersword and see if he can hit the next line. I'm thinking the last line should spell something like A A R G H.

Monday, October 4, 2010

The in and the out of it.

The port is flipped. This I know.

The first nurse to take us back started with, "So you think Eve's port might have flipped?"

Thursday, September 30, 2010

Pop Quiz

What would you do if your kid was bald?

40% of you said, Let him track boar through the jungle and talk to the island.
25%
of you said, Wax it, just to see if you could get a good reflection out of it.
35%
of you said, Rent ad space.

Wednesday, September 29, 2010

Red Dye #48

Because sometimes when we aren't spending all of our lives in clinic, we try to come up with new ways to occupy our time. (The house will get cleaned at some point...before the kids go off to college.)

Tuesday, September 28, 2010

Le Port, Part Deux

I thought we had taken care of this already. Ports can flip when not stitched down, although it's very rare.

Rare. The next time I want to hear that word, it better be referring to that steak I'm treating myself to.

Monday, September 27, 2010

Children of the Corn Maze

Natalie: Eve, I'm so glad you're better!
Eve: Yeah!
Natalie: Eve, do you know why I'm glad you're not sick anymore?
Eve: Yeah!
Natalie: I was sad when you were sick. I like it that you're not on chemotherapy anymore.
Eve: Yeah!
Natalie: And I like it that Mommy can come do things with me at school again.
Eve: Yeah!
Natalie: And I think you look better with hair.

Thursday, September 23, 2010

Inspiration

So I had one of those AH-HA! moments today. You know, when I was being totally productive and killing time I don't have on YouTube.

Wednesday, September 15, 2010

The littlest crew chief.

Someone has made it onto the Jeff Gordon Foundation website.

Nothing else to report from the Griffith household, unless you count the daily reminders of little Tyler, a neighborhood boy in Natalie's class that carpools with us.

Saturday, September 11, 2010

"What can I do to help?"

I'm cashing in on your offers of help over the past year. I hope you meant it when you said you wanted to do something.

Tuesday, September 7, 2010

Love from Natalie's Mom

I prepared last week for a weekend of family and food by eating lightly dressed lettuce for lunch and dinner everyday. (Well, except for that pizza buffet I talked myself into, but I'm pretty sure that didn't count because I was eating it with Eve, whose presence alone ensures I burn a few hundred calories just by doing loops around the pizza bar and repeating the phrases, Eve, sit down and Eve, no more salt on your pizza and Eve, stop running into the kitchen.)

Wednesday, September 1, 2010

The Eye.

Today was Eve's follow-up appointment in radiation-oncology. Hard to believe it's been six months since we nuked her guts. Times flies when you're glowing green, I suppose.

Monday, August 30, 2010

Hey, it's not cancer.

This past weekend, a fellow cancer mommy and I (with handlers in tow) booked it eastbound to the nearest beach. We packed lightly and drank heavily. Kind of like college, except more awesome because when you are away, you absolutely appreciate the reprieve from trips to urgent care and early morning wake-up calls courtesy of the short ones who follow us around.

Monday, August 23, 2010

We ain't got no innocence.

Hell, we can't even think of a word that rhymes.

As many of you know, I'm a big believer in not following any trends until they are about five years gone. Which makes it the perfect time for Matt and I to start watching LOST from the beginning.

Thursday, August 19, 2010

Sweeping Booty

I couldn't have told you that Eve ever realized she was bald a few months ago. But, I found this under a couch cushion:


Tuesday, August 17, 2010

Benadryl there, done that.

I've been under the mistaken impression that kindergarten was supposed to tire out my daughter. You can probably guess who it has been tiring out instead.

Thursday, August 12, 2010

Danime

I swear I don't have Munchausen's by proxy; my kids just need frequent visits to the doctor.

At Daniel's 4-year checkup, he couldn't see the stereo images during his eye exam. When the pediatrician looked at Dan's eyes, he couldn't be sure that both eyes were focusing on the same point.

Sunday, August 1, 2010

The thing about cancer is...

It blows. Seriously. It sucks, like no other.

There are those who will say, "Well, if you're going to get cancer, Wilms is the one to get." That's like saying, "Well, if you have to get a limb amputated, the left arm is the one to lose."

Tuesday, July 27, 2010

A Whole 'Nother Story

Another reason my kids are special: their new favorite movie is Corpse Bride. And Natalie's favorite part? When the corpse comes out of the ground and chases after Johnny Depp. I mean, I get the Johnny Depp part, but the dead body is a whole 'nother story. I did not anticipate the critical acclaim for the film from my group of preschoolers- I picked it up for myself from a movie store going out of business. I like to collect all things Johnny Depp much as I do old cookbooks and big earrings. You just can't get enough of some things.

Wednesday, July 21, 2010

Eve, the littlest Munster.

The kids and I have been playing in the river near my sister-in-law's house with their cousins. The water is warm and much resembles a giant vat of sweet tea. It makes me want biscuits and fried chicken. The only reason I do not partake in said biscuits and fried chicken is because I am wearing a bathing suit and am already sucking it in as it is.

Sunday, July 18, 2010

Sick and/or tired.

Matt's mom had a party for Eve on Saturday to celebrate the end of her treatment. Between the party last month at my parents' and the one yesterday, Eve thinks she's been having birthday parties, and why wouldn't she? There's cake! Presents! People thisclose to pinching your cheeks!

Thursday, July 15, 2010

I'll show you mine if you show me yours.

Eve got to have a playdate with a little boy named Franklin, who will be one of seven other children in her preschool class this fall. They are both the same size, they both like to play chase, and oh, they both have this little thing in common called bilateral Wilms.

Wednesday, July 14, 2010

Are those leftovers on my chest?

Yet another way I am reminded that Eve is special:
Each night when I break out the Press 'n Seal to wrap up leftovers, Eve walks into the kitchen and lifts up her shirt. Exhibitionist? Only on laundry days. No, Eve sees that yellow rectangular box and thinks it's time to put some Emla on her port. Press 'n Seal is much gentler on her skin than the adhesives that come with the numbing cream, so we keep it around the house. Now that we don't need to use it very often for Eve, I'm thinking of having a little European Body Wrap party. Lose 6 to 30 inches in one hour, guaranteed!

Saturday, July 10, 2010

The Griffith Law of Sympathy

The Griffith Law of Sympathy is as follows:
The amount of compassion is inversely proportional to the amount of hair, if hair growth remains constant.

Wednesday, July 7, 2010

The Constituents of Wilmsville.

In what way will Christy use her nacho cheese while emotionally eating?

27% of you said With a 2 lb. bag of round corn chips.
29% of you said With any piece of food that is not already covered in ranch dressing.
44% of you said With a spoon, while listening to Foreigner.

Tuesday, July 6, 2010

Life's a beach.

Missed us, did you? Well, we were away at the beach. Nothing like a little fun in the sun to make you forget there's only a month before the next set of off-treatment scans. No, Scanxiety, you cannot reach me here where the sand is hot and the beer is cold.

Tuesday, June 29, 2010

Herding Cats

Have you ever woken up the morning after a large dinner and find that you are still full? Well, I'm still full from Thursday night. I made a birthday dinner for my mom that would have made Paula Deen quiver at the cholesterol content: fried chicken with cream gravy, mashed potatoes, corn on the cob, lima beans, fresh peaches, and grilled texas toast. Let's be honest- I was full three bites into the meal. But, as a card-carrying member of the Clean Plate Club, it was my duty to finish. Because if you don't eat every single morsel of food on your plate, you don't get dessert. That's the way it's always been and it makes perfect sense. "Natalie, finish ALL of that fried chicken if you want some cake. And don't forget that drop of gravy." Why are we fat in America? No idea. I think the problem lies with organic produce.

Wednesday, June 23, 2010

The Soapbox

Mrs. Griffith goes to Washington.

Wait, is that me? Mrs. Griffith is my mother-in-law. I honestly had a moment the first time a babysitter called me that. I know I have gray hair and don't go out on Saturday nights anymore, but please, I'm still young! It's like the first time you go out and don't get carded...and then you rush out to buy better under-eye concealer.

Monday, June 21, 2010

Reach the Day

Today I participated in my first Reach the Day training. Reach the Day is an annual event for members of the childhood cancer community to come on down to Washington and beg/demand/ask nicely for research money. Tomorrow, we converge on Capitol Hill and meet with our House and Senate members. Somehow, I am going to be bringing my own little cancer card named Eve with me to seven different meetings in hopes that her charm and good looks will convince people on appropriations committees to fund the Caroline Pryce Walker Conquer Childhood Cancer Act for the full $30 million dollars Congress is authorized to give the Children's Oncology Group each year for five years. Did you get all that?

Sunday, June 20, 2010

It's 5:00 somewhere.

Where did the time go this week? Between the pool, Safety Town, and Vacation Bible School, I'm not sure where the kids found time to make a mess. So where did the time go? Hmm...maybe it's hiding under the couch with everything else from the playroom.

Monday, June 14, 2010

Normalcy for Dummies

Thursday night kicked off "let's get really excited for kindergarten" week. Matt and I went to the parent orientation at Natalie's soon-to-be elementary school and listened as the staff answered questions to a room full of Nervous Nellies. A few of which mistakenly showed up at the kindergarten orientation instead of their kids' Mensa meeting. ("But just HOW are you going to challenge my child once he's bored with chapter books and kindergarten math? What do you mean, you can't teach them the next grade level up?? My child is obviously much smarter than these other people's kids!")

Wednesday, June 9, 2010

Monday, June 7, 2010

Knee-Who-Must-Not-Be-Named

You might have been able to tell that I have a mild obsession with food. I don't discriminate; I will eat nacho cheese for my first course and chateaubriand for my second. You can imagine my surprise when Matt said we were going to Second Empire on Friday for my birthday. I would have been happy with Taco Bell! But most definitely not as happy.

Saturday, May 29, 2010

Scanxiety.

Where to begin since we last talked? Ok, I guess this time I'll go in chronological order.

Wednesday was Natalie and Daniel's last day of preschool. I brought cupcakes in for Daniel's birthday, so I couldn't get away with not bringing them into Nat's class, even though her birthday isn't until Memorial Day. She's great at the emotional-blackmailing.

Monday, May 24, 2010

The Griffith Chronicles, Part 100

Never a dull day around here. Why should Sunday be any different?

Saturday night was cake time. I baked and frosted and baked and frosted until my blood sugar shot up by osmosis.

Friday, May 21, 2010

I dare you not to come. Just kidding. Please come.


I've written before what incredibly awesome friends we have. Well, let's talk about this Team Eve BBQ & Family Fun Day Fundraiser that they have been working so hard on---

Wednesday, May 19, 2010

I -heart- fried chicken.

Tonight, our friends and friends-of-friends made Chick-Fil-A look like a clown car. It was packed! We couldn't even find a parking spot.

Matt dropped me, Nat, and Dan off to go eat inside. Good luck finding a seat! Dan found his best friend from preschool and sat down with her. He told me earlier that he wanted to marry another girl in his class, and when I asked why not Cammie, he said, "Because Cammie is my friend. We don't marry our friends."

Tuesday, May 18, 2010

Daniel, Beta Version

I am thinking of releasing a Daniel doll with a pull-string that says five phrases:

1. I need to go potty! (When he's about to go right then and there.)
2. I'm afraid. (Used as an excuse not to do things, like clean his room or turn on the lights.)
3. I'm thirsty. (A filler phrase, for when he can't think of something interesting to say.)
4. I'm hungry. (Said every 7 minutes while awake.)
4 a. I'm still hungry. (After a snack of two cheese sticks, a pb&j, and some crackers.)
5. I don't like that! (Said anytime he walks through the kitchen and I am fixing something for the rest of us that is not cheese sticks/peanut butter and jelly/crackers.)

Sugar Rush


On Thursday, Daniel, Eve, and I took Natalie to the dress rehearsal for her ballet recital. Eve looooves ballerinas. Well, she loves them the first two dances. Maybe even the first four dances. But by the time the Village People come out, she's done with bow-wa-weenas.

Wednesday, May 12, 2010

The Wise One Returns

So, I have this friend whose daughter has beaten the beast twice. She's pretty much the Dumbledore of all things Wilms, and so aptly sums up anything I could try to write, but in a much more articulate way.

Tuesday, May 11, 2010

-fin-

Yesterday was the day. Eve's last chemo day. Hip hip hooray! It was finally over with, although much more anti-climatic than I had anticipated. There was no ticker-tape parade, no high fives with the doctors, no straight answers to my questions.

Sunday, May 9, 2010

Don't you know what causes that??

Yesterday, my friend Mark and I attended the Cornhole for a Cure fundraiser sponsored by the N.O.R. Foundation. The two of us were the only people with matching t-shirts, so people were very intimidated by us, thinking we were some serious cornhole players. As they should have been. Here we are, pointing to the bracket that clearly shows we blew away the first two teams we played against:


Thursday, May 6, 2010

Remember me?

You know you visit the pediatrician a lot when you call to schedule an appointment and you are identified before you identify yourself.

Tuesday, May 4, 2010

The last six months, in 2 min. 45 sec.

For those of you without a child with a life-threatening illness, you probably have never heard about Songs of Love. It's a pretty awesome organization that will write and record a personalized song for your child. Eve's song arrived several months ago and has been a hit around our house. Thanks to Carl Allocco for taking the time to give Eve the gift of song. Click here to become a fan of his on Facebook.

And here's a recap of Eve in pictures from Eve with hair, to Eve with no hair, to Eve with bad-ass scar. Thank you to Jo Garvin of Jo's PhotoMojo for documenting this chaos. Become a fan of her on Facebook, too!

Monday, May 3, 2010

The New Normal

Recently I was asked if Eve is aware of her illness. I doubt Eve thinks any of what she goes through is unusual. This is our new normal, and she just goes with the flow.



She often looks indifferent when people call her brave. Doesn't everybody go to the doctor twice a week for blood counts and blood pressure checks?

Sunday, May 2, 2010

Who moved my cheese?

How hard was it to have National Turn-Off TV week during double Griffith surgery week?

20% of you said, "I can't figure out how to make dinner with these damn kids in the kitchen."
30% of you said, "I can't figure out how to go potty with these damn kids in the bathroom."
50% of you said, "I can't figure out how I am supposed to keep Eve still during Dan's surgery and then come home and let him rest on the couch without my beloved boob tube."

20% of you haven't mastered the art of one-armed cooking with one child on your hip, and one child on each leg.

30% of you are too modest.

50% of you didn't know that the no-TV rule only applied to Natalie, and luckily Nat was at a friend's house all day long when Dan had his adenoidectomy so we could eat popcorn and lay on the couch all day long. Score!

But the real question is...how hard is it to NOT get into this 6 lb. 10 oz. container of nacho cheese?? (Daniel didn't even weigh this much as a newborn.) And why is the purchase of said cheese in the top three events of my weekend?

Maybe it's the self-imposed quarantine of the last six months that has considerably lowered my excitement threshold. Whenever Eve is declared N.E.D. (no evidence of disease), maybe I will up my standards to something like Brie.

Thursday, April 29, 2010

The compassion of siblings.

One of Eve's Chemo Angels sent the kids a package the other day with some gifts in it, including three Mickey Mouse lollipops from Disneyland. I let Dan and Nat have first dibs at the candy, Daniel choosing the green and Natalie choosing purple, leaving Eve with the orange pop.

Eve was not happy with this. She is used to getting what she wants when she wants it. And she wanted purple.

Eve: I want purple!
Nat: You get orange. The purple is mine.
Eve: NO! I WANT PURPLE!
Dan: Eve, Natalie has purple. You can have the orange.
Eve: I want green!
Dan: Green is mine.
Eve: I WANT GREEN!
Dan: Eve, when it's your birthday, I will give you an orange lollipop and a green lollipop.
Nat: Yeah! When it's your birthday, I'll give you an orange lollipop and a green lollipop, too.

-pause-

Nat: But first- it's not your birthday.

Tuesday, April 27, 2010

She can point her fingers AND do the twist.

Totally cute, right? Eve got this outfit (sans Dan's slippers) in the mail from one of her Chemo Angels. I'm not quite sure when I'm allowed to wash it since she doesn't want to take it off. "I'm a bow-wa-weena!"

And I'm hoping we'll get through the last chemo without any side-effects like neuropathy (or the slappy-foot). Look at her! She can go up, go down, get back up and turn around!



Today's fluff post was brought to you by the letter C.

Monday, April 26, 2010

Christy Bueller's Day Off

Saturday marked our 6th wedding anniversary. We got lots of well wishes, including an extra-special one from Scott S. of Raleigh, NC: "Congratulations! And to think nobody believed me when I said you would make it this far..."

Note the absence of gray hair, dark circles, and "baby weight."

With my parents in town to preside over Camp Kiddo, Matt and I left at lunch time to spend the whole day out of the house. And what a good day that was! I mean, I love my kids, but I also love going to the bathroom in private. Even if going to the bathroom in private means using a Port-a-John in public.

We headed out to the NC Museum of Art which had just reopened. Being away from the kids, it felt like we were playing hooky a la Ferris and Sloane. It was empowering, like the first woman to who wore really big shoulder pads must have felt.

There were dementors, but they didn't bother us.

We also seemed to be walking through a crime scene, but no one seemed too concerned.

After we managed to escape without tripping over anyone, we went to the World Beer Festival downtown to enjoy endless 2 ounce servings of tasty beverage. Which was the perfect pre-game event for our final destination...going to see The Breakfast Club at Lincoln Theater. They are one of our favorite bands who play nothing but 80s covers, and only the ones that you would know the words to. I'll be the first to admit that I have not kept up with any current music since high school, and am painfully aware that all the bands I go to see will probably be dead within ten years of natural causes.

While Matt and I were listening to the glory days of hair bands gone, Eve was apparently channeling her inner angry rock star who needs no stinkin' mic. Listen to her project! I had no idea the sandbox had such good acoustics.


She can start her own no-hair band.

Saturday, April 24, 2010

Catfishing

It's National Turn-Off TV week and we are trying our best to keep the kids away from the television and computer. And it's hard. Seriously. Where did all these kids come from and why are they calling me "Mom?"

Don't get me wrong, I like the idea of it. A lot. It's just that I can't figure out how to make dinner when they are nipping at my heels. I want to say, turn on PBS and leave me alone! But maybe this week is God's way of reminding me to donate to public television.

We've cooked together. Some of you may remember Nat's quest for strawberry pie at Christmas. Well, we got the strawberries, we made the pie. And you know what? Apparently what she really wanted was pumpkin.

But the cherry on the top of this week was getting Daniel up at 5:30 to go to the hospital for his adenoidectomy. I'm so not a morning person, and this is a trait I have passed onto my son. But I was pleasantly surprised when I went into his room, rubbed his back, and he sat straight up. "Is it time for Dr. Garside to take out my adenoids?"

So as we waited for his turn in the O.R., he was asked by many people what he was having done. "I'm getting my boogers out so I can breathe through my nose."

He was given yellow hospital socks, you know, the ill-fitting, non-skid ones with the grippy stuff on both sides. (Am I the only one who thinks that's weird to have it on both sides? Is it so you can turn them around if they get dirty? That's like turning your underwear inside out from the day before.) These socks would prove to be his most prized possession. For those of you who don't know, Dan's favorite color is yellow. And the yellow socks match the yellow rain boots. The yellow rain boots seem to match everything, or at least Dan thinks so, since he wears them with...everything. And he loved his new socks so much, he brought them for show and tell today.

Dan was given some Versed, which I have seen Eve take with little to no effect. However, this stuff worked great on Daniel, and after he spritzed on some Eau de Chill, he melted into a puddle of calm in my lap on the hospital bed. Normally he can't sit still and is always elbowing my face or kneading my stomach like a cat in an effort to get comfortable. With Versed, he would have been comfortable on a bed of rocks, or even a sofa bed! It was to my supreme disappointment that the hospital does not offer to-go cups of it.



The doctor came in and Dan asked what he was going to do with his adenoids after he took them out. "I'm going to go catfishing with them!" To which Dan would later repeat the story as, "Dr. Garside is going to take my adenoids out and give them to a fish cat because it has whiskers and eats yucky things!"

And after the surgery, the doctor told me Dan's adenoids were in fact quite yucky. Huge and nasty if I remember correctly. Maybe I'll skip the fried catfish dinner this weekend.

Daniel woke up completely disoriented and terrified of the tubes and leads taped to him, and his first instinct was to start disrobing. (I hope he doesn't start stripping when he gets that fight-or-flight response later in life.) It took a good while to calm him down enough where he would take one sip of juice so he could be disconnected from the IV, but it was done with the help of the yellow socks. The yellow socks await if you take a drink, Daniel!

I politely listened to the nurse go over the discharge instructions during Daniel's wailing. I almost pulled out my laminated cancer card to let her know she could speed things up. Sedation? Been there, done that, at least 15 times in the past six months. But I decided to pretend I was a normal parent who hasn't been through all of that other stuff and acted as though this was a very big deal and vowed to make sure he didn't participate in much physical activity for the remainder of the day while giving him Tylenol with codeine to relieve any discomfort.

Codeine naps are the best!

Monday, April 19, 2010

The countdown begins.

Long story, extremely short version:

Surgery to repair port- done.

Stuff Eve full of food because she wakes up starving- done.

Chemo- done.

Recovering from yesterday- almost done. Wake me up before the next chemo.


4 down, 1 to go.

Thursday, April 15, 2010

Don't get cancer on a Friday.

I realize I have never written in detail about the day Eve was diagnosed with cancer. The following is my PSA for the importance of well-baby visits.


Monday, October 19, 2009: Eve's 2-year check-up.
Everything went well until the pediatrician started feeling her abdomen. I've seen him do this to my kids at every check-up and have never thought anything of it, much less what he was feeling for. He seemed to be concentrating on the right side of her stomach for a little longer than usual, which was noticeable to me but not alarming. He then asked me to try to feel this "ping-pong sized mass" he felt when he was trying to find the liver. The doctor sported a pretty good poker face, finished the rest of the exam, and went to find another doctor to come in and feel Eve's ping-pong ball. At no point did either doctor make me feel scared of what might lay ahead. They recommended an ultrasound to check it out, and I made a Friday appointment at Wake Radiology. Had I known there was something in there that doubles in size every ten days, perhaps I would have scheduled it for Tuesday.

Friday, October 23, 2009: The worst day of my life.
I woke up at 7:30, having only gone to bed two hours before. I stayed up late making a few cakes, but the power nap would have to do. Again, had I known the day ahead of me, I would have canceled the cake orders and rested up.

I dropped the kids off at preschool while Matt drove Eve to Wake Radiology for her ultrasound. I didn't feel like the scan was a big deal, but Matt insisted on going. (Again, a good call on his part.) I drove out there to meet them, nauseous from the lack of sleep and lucky I didn't kill myself or anyone else on the road. I found Matt and Eve in the waiting room, the child a little bit aggravated from being NPO. Little did she know this would be one of many NPO days, otherwise days known as "Mommy needs a glass of wine."

After what seemed like a long wait, they finally took us back and Eve did a great job of holding still while the ultrasound tech took pictures of her kidneys. Now, I am no expert at ultrasound pictures, as I could barely make out if I was growing a human baby or a chinchilla inside of me when I was pregnant. But I did ask what was being scanned, and when she said the kidneys, I had a feeling that those large black spots probably shouldn't be on them. However, the tech did not seem concerned and kept chit-chatting with us before going to get the doctor.

The doctor came in and looked at the pictures, then asked for the tech to do it again. She whispered something and then said she had to go call our pediatrician. This is when the sinking feeling in my stomach began and would stay for the next few days.

When the doctor returned, she said something along the lines of, "I'm sorry to be the one to tell you this, but there are masses on her kidneys. Your doctor is expecting you at his office right away, and he will figure out what oncologist you will need to see. It looks like it is consistent with Wilms."

I knew what oncology meant. She didn't have to come out and say the C-word. This would be the first time I had ever heard the name Wilms.

I could absolutely feel the color drain out of my face. I remember the feeling of my whole body shaking and my heart pounding, and all the while trying to smile at Eve, because the child had no idea what she was in for, and I didn't want to clue her in.

We went straight to the pediatrician's office. I had Matt drive me, because now that I was fully awake, I was also just as likely to kill myself or someone else from sheer hysteria. We got to the waiting room and put Eve down to play with the toys. I sobbed and sobbed and sobbed. The receptionist asked if we wanted to wait in a private area, but for some reason I looked at her like she was crazy and told her I was fine. I'm pretty sure I was scaring the other parents in the waiting room.

A nurse took us back to an exam room and our pediatrician came in after a few minutes. I'm sorry. Though meant to be comforting, "I'm sorry" just made my mind jump and add "that your kid is going to die." We asked what Eve might have, and he mentioned the words Wilms and neuroblastoma. Whatever else he said remains foggy to me.

The first order of business, could we give Eve something to eat? She had been up for five hours without any food or drink. The doctor let us give her some milk and he brought her a few cookies. Next item: what hospital do you want to go to- UNC or Duke? That choice was easy. As NC State alumni, we run an ABC household. (Anywhere but Carolina.)

The doctor left the room to call Duke and make arrangements for Eve. I figured Nat and Dan shouldn't hitchhike home, so I needed to figure out how to get them out of preschool and to someone else's house. I didn't have the preschool's phone number in my cell phone, so I called a friend to ask for the number. I remember she asked if I was okay and I said no, without any explanation. Thankfully she didn't press me about it, because I don't think I could have said the word "cancer" without breaking into the ugly cry. Meanwhile, Matt called another friend of ours and made arrangements for her to pick up the kids.

I called the preschool receptionist to let them know my friend was going to be picking up Nat and Dan. About ten minutes later, one of Daniel's teachers called to let me know he had a fever. She must have thought I was the worst mom ever, because I told her that I would not be coming to get him, and she could tell my friend who was picking him up that he had a fever. My friend has a mild case of germophobia, but I figured cancer trumps fever. Thank goodness for good friends.

Matt and I were still completely unaware of how our weekend would be spent. When the doctor returned, we were still under the impression that we were going for an appointment at the children's clinic at Duke and would be leaving when it was done. I don't remember how it came up, but the doctor told us no, we would not be going home. Pack your bags because she will be admitted. It kept getting more serious and serious-er! Oh, and don't feed her anything else, because oncology will want to do more scans and she will probably need to be sedated for them.

I don't remember if we talked on the way home, but I do remember looking at Eve a lot and feeling horrible that she seemed so unaware of what was going on. Even though that was a blessing, it still seemed terribly wrong. We arrived at the house and I wandered around aimlessly trying to figure out what was appropriate for a 2-year-old's hospital stay while Matt made the family phone calls. I called the person who ordered the cakes and let her know that I would be leaving them at my friend's house, and she asked if everything was ok. "No, my daughter has cancer." That is like the opposite of ok. But as soon as I said it, I realized how I left her with no options of saying anything that would leave her feeling comfortable with the conversation.

It was a very surreal day. I kept wondering if this was really happening or if it was some chocolate-induced dream that I couldn't wake up from.

We got to Duke that afternoon around Eve's normal naptime (though she wasn't going to be napping) and made our way up the elevator to the fourth floor, Hem-Onc clinic. It was pretty empty, so we were immediately taken back to a room. This is another blurry memory, but I do remember two nurses having the pleasure of putting an IV in Eve's arm. And by pleasure, I mean they enjoyed it about as much as Eve and I did, although they never let on. That's why it takes special people to work with kids, you know? The oncologist came in, felt Eve's belly, and repeated what our pediatrician said about it most likely being Wilms or neuroblastoma. He said some other stuff that escapes me now, but I do remember the most important thing he said: Whatever happens, we have a plan.

Eve had her belly felt by a few other doctors and then we were taken to the main hospital and admitted. So far, even with being starved and skipping her nap, Eve had impressed everyone with her demeanor. Although the sedationists had all left for the day, there was talk of having Eve do a CT scan without sedation. She seemed calm and cooperative.

When we got into our hospital room, two residents came to do another exam and ask the same questions we had been asked four times before. My mommy radar went off when one doctor wanted it noted that Eve's tumor was painful. I told him it was not hurting her, that she was just very tired and hungry and was sick of being poked. She had not cried or winced once when the previous dozen doctors felt it. He ignored me and wrote down his version, which earned him a big black X in my book. Don't mess with Mommy.

We were told not to let Eve have anything to eat or drink because they were trying to get a CT scheduled at any moment. This was one of the longer moments of our lives, from 4-10:30 p.m. What do you get when you take a two-year-old and deny her sleep and food? I'll give you a hint: it's horned and rhymes with hatin'.

The resident's plan was to give Eve some Ativan and Benadryl to calm her down and let her have the CT without sedation. At 10:45 p.m., we were wheeled down to radiology. Eve appeared very drowsy, although it was over three hours past her bedtime and she was just given some meds to "take the edge off." The timing of the scan made us think that Eve's situation needed to be diagnosed ASAP.

I tried laying her down on the scanner. No dice! It was like someone gave her a shot of Red Bull and some liquid nightmare.

The resident decided to give her some more Ativan. She looked as though she might fall asleep on my shoulder, so we tried to lay her down again.

Nope. Not having it.

I told the resident it was not going to work and asked if we could just wait until someone could sedate her before we did the scan. It was close to midnight and everyone was miserable. But in his infinite wisdom, he gave her not a third, but a FOURTH dose of the drug before she was screaming so loud that he decided it might not be working. I'm not sure what medical school he attended that led him to make such astute observations and hypotheses. His next brilliant idea was to let her fall asleep in her hospital bed and then wheel her down to radiology and try the scan then. Maybe because Wilms is relatively rare, he wanted to be the first to see pictures of it in Eve?

We went back upstairs to our room and listened to Eve scream inconsolably until 4 a.m. We could do absolutely nothing to calm her down, which I reckon is the definition of inconsolable. The nurse kept coming in and commenting how some kids react like this when given Ativan (our first clue that Eve was special). Finally, the doctor came in and decided maybe it wasn't a good idea to try to get the scan in the middle of the night. He concluded that she might be upset because she was hungry, so we could give her some crackers. Seriously, he came up with that all by himself.

Eve feel asleep a little while later until we were awoken at 7 a.m. for blood work. So, between Thursday night and Friday night, I got 5 hours of shut-eye. Please forgive me if what I have typed does not make sense, because it was put into a memory that was severely sleep-deprived. And not to mention NPO. WE WERE ALL NPO.

Saturday, October 24, 2009: the CT.
The hospital was able to find an anesthesiologist who could come in and put Eve to sleep for the scan on Saturday morning. The doctor gave Eve some of the good stuff that only anesthesiologists can. She was taken away for the scan and we were left to our own devices again. Terrible things can run through your mind at a time like this, but none so terrible as what may happen if you came across that resident from last night again.

Saturday and Sunday were big blurs. There were plans made and plans canceled. There were visits to and by every -ologist in the hospital: hematology-oncologists, radiation-oncologists, nephrologists, cardiologists, dermatologists, opthamologists, radiologists, anesthesiologists, plus a geneticist for good measure. (We are still getting bills from this weekend.) And the worst part was the waiting. People don't do business on the weekend.

It would be a couple of days before pediatric oncologists all over the country opened up their email and saw Eve's case, and then some more time before they typed up an opinion and pushed "reply."

Which brings me to the moral of the story: Don't get cancer on a Friday.

Wednesday, April 14, 2010

Seriously? Seriously.

How is it only Wednesday?

This week, there have been the mischievous stylings of Daniel Griffith. (His pièce de résistance would be covering the white vanity in pink nail polish. I could only get it off with nail polish remover, but now the table needs to be repainted because I have removed all the gloss. Obviously, Daniel thought I didn't look busy enough.) There have been the Dallas-worthy dramatics of Natalie Griffith. ("I don't like you today! You NEVER let me do anything! Why can't I have email?") And then there was today.

Today was picture day at preschool. I was trying my best to get the kids somewhat presentable so they wouldn't hate me when they are older, thumbing through old photo albums. I got Nat & Dan dressed, only needing to put on their shoes. On the way to the shoes, I walked past Eve who was standing in the dining room saying, "My port! My port!" She often touches it and talks about it, and I thought nothing of it. There was no distress in her voice at all.

"Look, my port!"

I look down at her as she pulls up her nightgown to expose her port. Something is very strange, indeed; it is like her skin is sticking to the nightgown and being pulled out as she tugs on the fabric.

The moment of realization of what I am seeing sinks in. Oh God, eww.

Yep. That's her port alright, turned sideways, like a very large coin trying to poke through her skin. Again, no distress on Eve's part. She's as cool as a very cool cucumber. Me? I am distressed. This reminds me of the chestburster scene from Alien. I call Matt into the room to see if he wants to touch it, because I simply cannot, and he gives it a go with no luck. We dial Duke and decide we will take her out there as soon as we drop Nat & Dan off at school.

Which brings me back to the shoes. Daniel has yellow fire fighter rainboots that he likes to wear with everything (shorts included), and today is no exception, even though they don't go with his black pants and button down shirt. I want him to wear some loafers. Eve flashes me her port again and I easily give in to Dan's demands. So now, when I look back at these pictures of this child in dress clothes and yellow fire fighter rainboots, I will also remember it as the day Eve's port about popped out of her chest.

We leave the kids at preschool and take Eve to Duke around 10:00. At this point, the port is not sticking out sideways anymore, but has completely flipped over to the wrong side, so we lose any chance of having them fix it non-surgically. And guess what percentage of kids have their ports flip? Uh huh, 5%. And our oncologist wasn't surprised "considering Eve's propensity to experience rare complications."

The surgeon will go into her chest and flip the port over. The port has small holes where you can stitch it to the patient. Eve's surgeon will use these holes this time. Not all surgeons use the holes. I don't know why. All I know is I'm tired of Eve being in the 5% of things. Note to anyone out there who might need a port: DEMAND THE STITCHING, or at least ask nicely. Maybe I'll start a Facebook group called, "If we get to 1,000,000 fans, surgeons will always use the holes."

So here comes the big jinx: no chemo on Friday. The drugs just aren't something you want to mess around with in an IV attached to a two-year-old. There was some horror story told to us about a girl who needed a skin graft when her chemo leaked out of the vein into the top part of her hand. So yeah, I'm cool with waiting. But for the record, this jinx is on account of a technical difficulty rather than low blood counts.

We waited and waited and waited some more for our 3:15 pre-op appointment. Downstairs Eve did not make an appearance, and for that we are eternally grateful. Finally, it was time to check in. Forms to fill out and sign for anesthesia, an exam, and blood work, all with trips to the waiting room between each step. I feel bad for Eve when she grows up and has to fill out medical history forms.

Finally we were freed and left to pick up Nat and Dan from the nice family they were farmed out to, getting home around 6:00.

*If* Eve has an early enough surgery on Monday to fix her port, they will leave her accessed and send us to the clinic to get chemo. If not, then we come back on Tuesday. Just as long as it's not next Thursday, which is when Daniel is having his adenoids removed.

I can't wait to see the box of EOBs that arrives after next week. Hey, ane$the$iology, just add it to our tab.

Saturday, April 10, 2010

Midnight in the Garden of Good and Griffith

I started Friday morning out by being asked for our insurance card at the pediatrician's office once again. We were just there on Monday. And the week before that. And the week before that. I promise my insurance has not changed in the past four days. Isn't my word good enough? No? You don't remember us? I'm the really tall girl who comes in with the bald kid twice a week. It's beginning to feel like the obstetrician who would introduce himself each time he walked into the exam room and say, "Hi, Ms. Uhh...[looks down at chart] Griffith." After I had been going there for 6 months. Twice a week. Third baby. I guess I have one of those faces.

Eve had her blood work done and amazingly enough (emphasis on amazing) her ANC was over 1800, her hemoglobin was 10.3, and her platelets were back in the normal range. Just over two weeks post-chemo! We had to double check the date on the report to make sure it wasn't an old one. We were told in the beginning that counts normally would hit rock bottom 7-10 days after treatment and then would creep back up again. Eve has never been normal (need I tell you that again?); she would always bottom out at about 14 days post-chemo before climbing back up. Which is why the oncologist we saw at her last chemo told us to wait 3.5 weeks instead of 3 to get cycle #4, so her counts would have adequate time to recover. But now it's looking like I can talk my way into the clinic at the 2.5 week-mark, to get back on schedule. (Sorry for that confusing paragraph. Cancer-moms will know what I'm talking about.)

Did I just jinx myself by typing that? I'm not sure why I'm so set on staying on schedule. It's not like we've been able to do anything for the past six months. Why start planning now?

Today was a day where both Matt and I realized we needed a plan for our yard, and quick. I sort of detest yard work, but I know Matt still needs to do it. I, for one, have a black thumb. And if I can't eat it, I don't have any interest in growing it.

We have an very unlevel lot and the builders spared lots of expense by cheaping out on things like, I don't know, making an even front "garden." I wouldn't even call it a garden- it's more like some sad looking, haphazardly planted shrubs that would push a depressed person over the edge. One side is two feet lower than the other. Just crappy, crappy landscaping.

Matt took Dan to Home Depot to devise a game plan. Eve napped, and Nat and I played in the sandbox out back for a little bit before I determined I was too big to be playing in a sandbox. I got the good idea to make 18 trips to the front yard with all the pine straw I had raked up. That Radio Flyer wagon really comes in handy when you don't have a wheel barrow.

I thought Matt would be impressed by my efforts to clear out our fire hazard of a backyard, but all I got was a "Why are you doing that? You know it's just dirt under there, right?"

Touché.

We adjourned to the dining room and ate supper and watched Dan needlessly injure himself as a result of being stubborn. We discussed preemptive Tylenol every four hours for the next five years.

Matt left for Home Depot again while I put the kids to bed. He returned, van filled with pavers and sand.

Which brings me to our front porch. Here I am, 11:29 p.m., watching Matt build a retaining wall in our front yard. I'm sure it's suspicious to some of our neighbors, but I promise the digging is completely innocent in nature. We just don't have the time to do it when the kids are awake. It's just placing pavers, I promise.

My job has been to hold the hand-crank flashlight and keep it cranked while Matt carefully makes sure each paver is level. It's hard, tedious work, but I totally got the better end of the deal. I did my share of heavy lifting though by getting all of the pavers out of the van and putting together a sick sort-of Pet Cemetery arrangement in the front lawn.

Our old 3-CD player from my high school days is in the garage, on random, filled with The Doors, Lynyrd Skynyrd, and a random 80s Power Rock CD. Unfortunately, I am reminded that the random mode never quite worked very well as it randomly plays Whitesnake's Here I Go Again over and over and over. In fact, here it goes...again!

My job duties also include refilling Matt's Gatorade cup and serving up delicious Extra Crispy Ore-Ida Tater Tots. But on a very serious note, why wouldn't you buy the extra crispy ones? Why is there even a choice? Soggy tots are weak. We need strong tots. It's like medicine. I'm always gonna buy the extra-strength stuff. Come strong or not at all! By having extra-strength Tylenol on the market, it's practically admitting that regular Tylenol is a failure.

I have done my job, holding the flashlight (for part of the night), refilling Gatorade, and serving delicious tots. I am here, on the front porch, trying to forget how cold I am. I keep adding layers to my ensemble, and I'm starting to look like a bag lady. Sun dress + jeans + sweater + scarf + boots = Natalie picked out my outfit.

Here I go again!

Thursday, April 8, 2010

Yo, Calgon!

Is it ok to have favorites?

6% of you said GASP! I adore my children equally! You should be reported for even asking this question!
2% of you said Yes. I have a middle child? Oh, crap.
91% of you said It's cool. You don't have to like them the same, you just have to love them the same.

6% of you make me wonder if you have children.
2% of you voted a little too honestly since this was an anonymous poll.
91% of you know what's up!

My favorite kid changes by the hour. Daniel is my favorite when he climbs into bed to snuggle with me. Natalie is my favorite at story time. Eve is my favorite when she pretends she's a ballerina.

Sometimes Eve is not my favorite. Sometimes she breaks into the pantry and empties sacks of flour all over the floor. Sometimes she sneaks out of time-out and breaks back into the pantry to do the same with the sugar. Sometimes she throws her cup of milk on the floor, determined to make me mop at least twice a day. It's like the surgeon took out the tumors, but left me with the TWO.

But then Nat and Dan (or "Search and Destroy") do something equally butt-headed and make me forget about my bald little imp, and I'm ready to post on Craigslist:
FOR SALE- Three kids, ages 2, 3, and 4 (as is). Like new! Stubborn Determined, won't take "no" for an answer goal-oriented, hyper enthusiastic, demanding persistent, rebellious independent, manipulative charismatic, irrational creative, has the attitude of a teenager articulate. Make me an offer. Priced to move!

And before I have a chance to post my listing, the kids are sound asleep, looking so innocent, and I forget about their deft plotting to have me committed.

Take me away!

Saturday, April 3, 2010

MRI, NPO, OMG.

Friday started out like any other day in the Griffith house, in that we starved Eve and waited a couple of hours for scan #15.

An 8:00 MRI means that you sign sedation consent forms for 30 minutes and then watch old VHS tapes for another 90 minutes while you wait for a scanner to open up. This was the earliest scan Eve has ever had, so the NPO wasn't too big of a deal...for the first hour or so.

She was taken back a few minutes before 10:00. I left for a cup of coffee and retrieved my book, since the scan would take about 45 minutes. I mean, MRI's are old hat now. I know how long a scan should take.

Which is why after an hour, I put down the book and listened for any sounds of distress. Nope, all was quiet in the pediatric radiology area (probably because most of those kids are sedated). I figured they got a later start and picked my book back up and tried not to worry.

About ten minutes later, I overheard a nurse say, "Kerry's patient woke up."

Dammit. Eve is Kerry's patient. Why can't we get some propofol in radiology?? Seriously, we need the big guns to put asleep the child who has NEVER stayed asleep during a scan, under "sedation." I understand another bolus of precedex quickly knocked her out for the remainder of the scan, so this was not the reason why it was taking so long.

At the two hour mark, I begin to get worried. What the heck are they doing with my daughter back there? As they bring her back to recovery, I am told that the scan took so long because the machine will only take pictures when she is breathing.

Yep. That's what I was told. I'm gonna have to call radiology and ask about that one.

We were outta there by 1:00. Not too bad at all for a scan day! That's darn near "in and out" as far as Duke-time goes.

Back home, Natalie and Daniel put the finishing touches on their entry for the neighborhood cupcake decorating contest. I heard cupcakes cure cancer. I mean, I think it was cupcakes. Either that, or chemotherapy. But I'm pretty sure that chemo works better when you eat cupcakes.


They won! Ahh, my mini-Messy Chefs. [Heavy on the messy.]

And what better way to celebrate a good phone call from your friendly oncologist than to shove a few cupcakes into the old pie hole? Yep, Friday night, the doc called and we got our first no-strings-attached bit of good news. The left kidney is larger than past scans, on account of it being the only one, err, left. There look to be no nephrogenic rests. No signs of tumor.

I reserve the right to post next week, bitching and moaning, in the event we get a phone call with some strings.

Thursday, April 1, 2010

Hi, My Name is Nat

Nat and Dan are official members of SuperSibs. Today, SuperSibs sent them a book called Hi, My Name is Jack (A Book for the Healthy Siblings of Chronically Ill Children).

Matt read the book aloud to the kids, and got to the page with these words:
"Having a sister that is sick is sometimes hard for me. I bet it is hard for you sometimes, if you have a brother or a sister or a friend who is sick."

Matt: Is it hard for you that Eve is sick?
Natalie: No, it's not hard for me. It's hard for Eve!

That's a good thing to remember. I don't want to let cancer define who I am as a person. Eve was dealt a crappy hand; it's my job to support her. It's hard for HER, but maybe I can make it easier. Afterall, I control the Dum Dums.

Tuesday, March 30, 2010

Do-overs

The weekend Eve was diagnosed with cancer, we were supposed to take the family on a trip to visit Matt's grandmother in South Carolina. Needless to say, we canceled our hotel reservation and checked into Motel Duke instead.

Five months later, we got up the courage to let Eve leave the house, and we embarked upon our trip to Greenville. We packed lots of hand sanitizer, Clorox wipes, and our own food (to avoid going into any fast food restaurants and picking up uninvited guests of the germ variety). Matt and I sanitized the hotel room as best as we could and hoped for the best.

After arriving at Grandma's apartment, we decided to take the kids into the courtyard and let them run around and get some fresh air. Matt's grandma lives in a retirement community, so when anyone under the age of 65 appears, we stick out like sore thumbs. That, and the speed at which the kids move must appear Mach-like compared to the residents.

I was holding Natalie when a resident approached us. She said, "Is this the little girl who was in the dining room today?" No, ma'am. We just got here a few minutes ago. We haven't gotten a chance to get to the dining room yet.

Pleasant-enough resident: "Let me look at her and make sure it's not her." So either A) she just didn't trust me or B) the little girl in the dining room had done something so awful that this woman believed I must obviously be trying to conceal our identities. After determining my daughter was not the same girl, the woman added, "You can't go to the dining room now; it's closed. Supper is already over."

This was at 5:00, by the way.

No worries about that. We headed over to Matt's uncle's house where his aunt fed the kids pizza, juice, Poptarts, and cupcakes. Then they almost cried to the heavens when Aunt Karen gave them Easter bags filled with candy! Oh, what to eat first? It was like vampires at a blood bank. We let Nat eat half of her chocolate bunny, and made her save the rest for later. Unfortunately for Peter Cottontail, there was some sort of accident, and shards of milk chocolate rabbit laid inside the bag. Natalie identifed the remains and said a few kind words, something along the lines of, HOW COULD YOU DO THAT TO MY BUNNY?!? in Matt's general direction. The next evening, Aunt Karen bought Nat a new chocolate bunny and all was well in the universe. They also received their first fart toys. It was far more exciting than I can put into words. The children are already asking to go visit Uncle Steve and Aunt Karen again so they can "toot and eat candy."


I only wish we could have taken this dog kennel home. It was a good place to put them when they were crashing and burning from the sugar rush. It also makes me question the money spent on a double bed and crib at the hotel.

Today, Eve and I returned to Duke, fingers crossed that her ANC would be high enough to get chemo. Nurse Brooke let Eve assemble everything they needed for a port access. As cute as it is, it's sad that my child knows which test tubes and which dressings she needs to pull out of the cart.




Lucky for Eve, her ANC came back at 1144. Not a great place to start knocking it down again, but it will work. Counts, check. Chemo, check. De-access, check. It was a relatively short day for us- only a 5-hour round trip to Duke and back. Now she is enjoying a nice litle Zofran nap.

3 down, 2 to go.

As soon as I walked in the door, the telephone rang. "Hello, Mrs. Griffith? I am calling from the Kids Wish Foundation. We grant wishes to terminally ill children." [Insert dramatic pause here where I stopped breathing because I thought someone knew something about Eve that I didn't know.]

"Can we count on your support this year while we help grant these children their wish?"

Friday, March 26, 2010

Aww, Chemosabe.

First things first: the chandelier is fixed. The washing machine appears to be working. Our van had a light come on that would not go away, so that's being repaired today. And Eve still has cancer. Good, you're all caught up!

We rode in our 1997 Nissan Sentra out to Duke, which gets smaller each time I get inside. I have become reliant on the DVD player in our minivan, and was at a loss today when Eve kept crying in the backseat of the car. Matt put it ever-so-gently when he said, "Do you know how to calm your child down, or do you only know how to aggravate her?"

Eve didn't make counts today, so no chemo. Her ANC was in the 400s, and it needs to be at least 750 to get zee drugs. We will try again on Tuesday. But it's cool, I had nothing else to do today but go to Duke. At least next week I'll be able to put on Kai-Lan to drown out the screams on the way out there.

While we were at clinic, Natalie and Daniel were at preschool participating in general merriment. Nat and I made our annual Griffith '70s Easter bunny head cakes last night to send into school for their parties:
('Cause nothing shouts HAPPY RESURRECTION, JESUS! like decapitated bunnies.)

Still 2 down, 3 to go.

Tuesday, March 23, 2010

The Numbers Game

5% of Wilms patients have it bilaterally. 33% of the kids in our house have bilateral Wilms. It's an epidemic!!!

5-10% of Wilms patients have more than one tumor in the same kidney. Eve had about 13 tumors between the two kidneys.

10% of Wilms patients have anaplasia (unfavorable histology). One of Eve's tumors was anaplastic.

Seriously, Mr. Statistics Dude, give us a break. Ignorance would be chocolate-covered bliss; too bad you can't unlearn things. But I'm thinking maybe we should play the lottery?

I want to be the neighbor of a friend described as, "So positive and happy and laa laa...I thought, either she is in denial of the situation, she is dim, or they're dying and she's lost her mind. After I got to know her, I realized she must poop rainbows and sing to the birds at every sunrise." I might not be able to crap out sunshine like that girl, but I can't sit around and cry all day! It's just cancer, right?

It's just a washing machine. It's just turned itself off randomly in the middle of a load on two occasions. It's like trying to diagnosis a man as a werewolf at noon- you CAN'T diagnosis it unless it malfunctions right then and there. I'm on a first name basis with Calvin the repairman. I'm taking bets on who gets better first: Eve, or the washer? My neighbors are starting to get suspicious with the Sears van parked outside of my house so often.

I love my kids. I love my kids. I love my kids. But if Nat could stop sounding like Becky from Roseanne, that would be cool. "MOTHER!" is not endearing to me. I keep stepping in puddles of sass around here. And how a four-year-old might already know that I am the worst mom in the whole world, I couldn't say.

I love my kids. I love my kids. I love my kids. Even when Dan says, "I'm sowwy I bwoke the lamp." He was in the lampless playroom when he made his admission, so I immediately went into the living room and checked on the floor lamp, which proved to be working and intact. The only other lamp we have downstairs is by the front door, and this, too, was unscathed.

I went back to the playroom. What lamp, Daniel?

"I'm sowwy, Mommy! I bwoke the lamp. It was an accident."

Which lamp did you break, Daniel?

"I bwoke the lamp in the diamond woom."

I know there is no lamp in the dining room, but I went to check it out, anyway. Sure enough, the chandelier is about a foot closer to the dining room table than it was before I took Eve upstairs. And in some kind of calm that I don't experience very often, I simply said, Daddy will have to fix this.

"I DON'T WANT TO SEE DADDY!!!"

Accident, my ass.

Monday, March 22, 2010

Eve, the neutropenic frog.

When your tadpole has low blood counts, you don't want them to go out and catch something that will really knock them on their tail. Time to burn some steam inside.

Does this look like she's got the slappy-foot to you?



I think we might have reached some new Vincristine-related toxicity issues with the voice. It sounds like Linda Blair reading for the part of "Possessed Amphibian #2."

(Is webbed-foot a chemo side-effect?)

Thursday, March 18, 2010

Kiss me, I'm contagious!

Sometimes time gets away from me. Sometimes I get ahead of it.

I made a point to put a green hairbow in Nat's hair before she left for ballet. When my friend arrived to pick Natalie up, I noticed she was wearing a green shirt. After getting Nat in the van and waving goodbye, I went inside like any normal person on St. Patrick's Day and got myself and the remaining kids dressed in green.

When my friend returned with Natalie, I made a comment about our matching green shirts to which she seemed only mildly thrilled about. Nat came inside, we got her dressed in green, and dropped her off at a preschool friend's St. Patty's Day party.

Dan, Eve, and I returned to the house, made some green milk, and enjoyed a lunch consisting of various green foods. We picked up Natalie and got back a few minutes before Matt got home. Dinner was on the table, Matt had just arrived, and we all sat down to eat. I made a comment to the kids along the lines of, Is Daddy wearing anything green? No? You get to pinch him!

At this point in the story, Matt looks at me like I've morphed into Harry freakin' Potter or something, and says, "Why would they need to pinch me?"

Me: Because it's St. Patrick's Day!

Natalie suddenly chimes in. "Mom, today is the 16th. St. Patrick's Day is tomorrow."

And just as suddenly, so many things started to make sense.


The real St. Patrick's day welcomed me with both a cold and some intense allergy issues. My nose is currently in the unique position of having the left nostril constantly running, while the right remains stopped up. I can't get my contacts in because of the intense itching to my eyes, so it's Coke-bottle glasses for the next few weeks. I look like I feel, so do me a favor and skip the "How are you doing?" nicety when you see me. Lie to me and tell me how good I look.

Tuesday, March 16, 2010

How to get your washer fixed in 3 easy steps

  1. Have washing machine in disrepair. Have it not fixed during a service call in October 2008.
  2. Call back in January 2010 about same problem plus some new ones and get stood up by repairmen. Blog about the experiences with key words such as Sears, repairman, and inconvenience.
  3. Enjoy repaired washing machine in March 2010.
For those of you who were following our Sears soap, the repairman did come out to our house last month to install the parts that were ordered. Unfortunately, they were not the parts that needed to be replaced and we had to wait for the correct parts...which were on back order. And I get suspicious when anything is on back order. Have so many machines had this problem that they can't keep up with demand for new parts? Or is the Maytag man working at the Kenmore parts plant and he's just lolly-gagging around?

But a big thank you to the very nice repairman who came out this morning and fixed our washer. And a bigger thank you for having us first on the list! I was floored that he showed up not even 30 minutes into our time window. I was sure he was going to be on Duke time. I admit there were some words eaten this morning on my end.

So you might be able to guess my answer to the following question:
What is the best part about having cancer?
55%
of you said blogging about it in a wildly inappropriate way.
27% of you said the baked ziti that your friends will bring to you.
16% of you said playing the "cancer card."

I know the following things about the audience who reads this blog:
55% realize blogging can actually get things done, like maybe get a major appliance serviced.
27% are not lactose-intolerant.
16% are late for their Sickos Anonymous meeting.

I apologize for leaving out an option for the actual best thing about cancer: The money saved on conditioner.

Monday, March 15, 2010

FUNraiser

I'm thinking this should be the flier for the fundraiser:



(Ashby F. is the coolest first-grader I know.)

Thursday, March 11, 2010

It takes a village.

The first rule about Cancer Club is, you do not talk about Cancer Club. The second rule of Cancer Club is, you DO NOT talk about Cancer Club!



Cancer is annoying and obnoxious. Cancer is depressing and more depressing. Cancer takes a bite out of your social life and a bigger bite out of your wallet. I am Jack's raging bile duct. It is important for me to just face those facts every once in a while and then get on with life. (Well, my new life.) I hear a lot of, "I don't know what I would do if I were in your shoes!" But honestly, what else COULD you do? If there was another choice, no one clued me in on it.

I'm gonna go completely cliche' on you, so advanced apologies. If you let cancer suck you in and you don't take the time to flip it the bird, it might as well win. It feels good to give Eve that chemo cocktail, like shouting "Eff ewe!" to any shady cells that dare look in her direction. I am Jack's smirking revenge. You have to find some kind of warped pleasure in it all or else you'll A) have mascara running down your face or B) be committed.

If this is your first time at Cancer Club, you have to fight.

And I'm not under any delusions that Eve is the only person affected by Wilms; Natalie and Daniel suffer, too. They haven't had any friends over since October. They sense our suspicions that they are hosting some horrible contagious disease each time they come through the door as they are hosed down with sanitizer. They beg for me to hold them as much as I hold the little bald one. They deserve a break from this madness as much as Eve.

Luckily, we have a great network of friends who are supporting our family during this bad dream. We are in debt to the people who take Natalie and Daniel into their homes and show them the affection that they aren't sensing from us at times. Not that it's not there, but at the end of the day, when you put in twelve hours at Cancer Club, it might not be as obvious to a three- and four-year-old just how much you love them.

If you were to ask the worst thing about Eve being sick to Daniel, he would probably tell you it's the constant handwashing that is the kicker. If you were to ask him what the best part is, it would be the Grandmas.

We have been more than lucky to have our moms spend the majority of their free time here. Nat and Dan have come to expect that Mimaw will bring gummy snacks and do crafts with them, and Nana will bring toys and take them to the movie store. Matt and I have even snuck out a few times at night when a Grandma is in town and slept in the next morning. To them, we are eternally grateful.

(And to my dad, thanks for not having any abandonment issues. Mom will be home soon!)

Our friends, neighbors, and people we don't even know have stocked our freezer full of food. I can count the number of times I've had to cook in the past month on one hand. We had fourteen containers of baked ziti at last count. That's a lot of cheesy love right there.

We have secret angels who leave gifts on our doorstep. Some little, some big, but all restore your faith in humanity. It's amazing how generous people can be when the crap hits the fan.

Some bring by money for hospital parking. Some bring by gifts for Nat and Dan. Some leave a bottle of wine at your door and give you permission to hang up the white coat and relax a little bit.

I say all this to let you know that while Cancer Club loses major points for the suckage factor, it also opens your eyes to the goodness in others. It truly feels like we're all in this together, except we are the ones with the hair in our food.

Thank you for all the good vibes that you continue to send our way. I don't get a chance to respond to messages in a timely manner, if I even get a chance to respond at all, but I do read all the emails, comments, cards, and letters, and go to bed happy. All is well in the universe sometimes, even when it's clearly not.


If you are on Facebook (and if you're NOT, come on! It's 2010!), you can join Team Eve. It was started by two close friends of ours who have a BBQ fundraiser in the works for us in May. http//www.facebook.com/pages/Team-Eve/308434913681?v=wall#!/pages/Team-Eve/308434913681?ref=ts

And the coolest part? There are shirts being printed! A friend of ours designed a cool "Team Eve" logo that will be on them, perhaps to the disappointment of some of you who were hoping for a "Cuck Fancer" design. (But I did get a Cuck Fancer shirt from Gwyn's momma last weekend, and it is teh awesome.) If you want to order one or find out more about the fundraiser, you can send an email to teameve@rocketmail.com.



It's late and I have Cancer in the morning.
"You met me at a very strange time in my life."

Sunday, March 7, 2010

Escape from Folsom

I wanted Jo (of Jo's PhotoMojo) to take some pictures of Eve in all her bald, scarred-up glory. Because if there was ever an "after" pic, THIS would be it:
Those thirteen tumors never stood a chance.

See the rest of the set here. You don't need to have a Facebook account to view the pics, but if you are on FB, please show Jo how much you love her work and become a fan. If you don't, I'm sending Downstairs Eve your way.

Thursday, March 4, 2010

Ni hao, Eve!

Eve's latest obsession is Ni Hao, Kai-Lan! For those of you not in-the-know, Kai-lan is a Chinese Dora who cavorts with emotionally immature animals. She teaches kids practical words you can use on your next trip to China, like "hello" and "dinosaur." What would make this obsession suck slightly less would be to actually have cable television and not just a DVD with the same four episodes on it. But, in perspective, it's not cancer, which sucks infinitely more than most things besides Barney.


Ni hao, hem-onc! Did you miss us?

Eve was understandably much happier to be entering the children's center instead of the rad-onc side. The big fish tank at the entrance was apparently a sight for sore eyes. Eve found the fish of her dreams, gave him a big kiss and a hug through the thick glass, and then started conversing with him. "But why, fish? Why are you swimming in circles?" And the fish opened wide and began to mouth his answer. Unfortunately I could not hear it, but whatever he said seemed to satisfy Eve.

You gotta hand it to all those fish in the tank talking to themselves. They really seem to be having some deep conversations. After all, if you can't talk to yourself, who can you talk to?

Upstairs to get accessed. The port is really mean looking lately; the Emla turns the site fire engine-red and all kinds of scary bumps appear. Six days in a row of accessing it for radiation has not done the skin any favors. No time to get too worried about that, though. Two minutes to get downstairs for an echocardiogram!

Well, maybe there was some time since we got to sit in the waiting room for a good 25 minutes. The radiology reception area is right across from the gift shop, which is home to buckets full of loose candy. At the eye-level of a two-year-old.

Strangers will buy you candy if you are bald.

The waiting area is full of things that have the potential to be fun. Like, dollhouses and train tracks. The only way to reach said potential is to actually have trains or dolls and furniture for said toys. I do not like the qi of the waiting room lately. The empty dollhouse has given up hope. Please buy more toys for the bald kids, Duke.

Eve finds the echo quite relaxing. She lies back, arms behind her head, and doesn't move for the next ten minutes. In fact, slap a pair of bad sunglasses on her and it could have been Weekend at Bernie's 2. I can only assume that everything is a-okay with her heart since the tech did not rush out of the room to find a doctor. I am beginning to learn this is a good sign. Eve gets a Beanie Baby for her superior chillaxing skillz and we are sent on our way.

Back upstairs for chemo. Beanie Baby goes overboard, ending his short life. We are happy no one was under the kamikaze bear. His body lays on the first floor next to the empty dollhouse.

Counts look good. Chemo is ordered. We floor the docs with news of the new bilateral case. Docs still maintain Wilms is not contagious.

To pass the time while we wait for the pharmacy to make up the poison, Dr. Wechsler shows us pictures on the internet of tumors cut out of patients. I ask for him to find out if the pathologist took pictures of Eve's kidney. If I can get my hands on a picture, we will have very interesting Christmas cards this year, for sure.

And we go back to the port once the internet is exhausted from my morbid curiosity. The docs think it's just irritation from all the accessing and tell us to watch for pus. Pus Watch 2010 is on.

Eve falls asleep in my arms. The nurse cannot get a blood return. Oops! The needle has come out of her port. Thankfully Eve sleeps through this and is not screaming in pain. Those nasty bumps must have been hypnotizing since we all stared at them and did not notice the needle coming out of place.

Eve wakes up during her Zofran drip and we turn on Kai-Lan. Seriously, these animal friends of hers have deep-seated anger management issues. I can get past the sordid tiger if he helps Eve stay still for the drugs, though. You don't want your kid leading a Zumba class while she's hooked up to a few feet of IV tubing. Xie xie, Kai-lan.

2 down, 3 to go.

Paper Cuts

I was sent an email from the mother of a bilateral Wilms patient who was able to put into words the things that I could not...at least not in a coherent way. Enjoy.

"Paper cuts still hurt."

That's what I said to a parent whose child didn't have cancer. She was telling me about a problem her child was having that was serious but not potentially fatal. She apologized and gave me what we've all heard before, the "How can I complain about my child when yours has cancer?" thing.

The way I explained it to her is, hey, even for me after diagnosis, if I got a paper cut, it still hurt. Sure, it was put into perspective, but that didn't mean I didn't curse and put my finger in my mouth and whine when I then got hand sanitizer on it.

I responded with how much I loved what she wrote. And how people always walking on eggshells around you can make it feel like there's a death cloud hanging over your head. SageSuperMom responds:

Thank you! Yes, the eggshells...that's still the one I'm dealing with. When people really want to talk to me about it, I try to make them understand how very "ordinary" cancer becomes. (Horrible, yes, but ordinary.) It's driving to chemo and remembering money to pay for parking and your child dropping hair in their spaghetti and saying funny things like, "I'm not sick! I just have cancer!"

I don't blame them for not getting it. I've been in cancer world for 4 years, and I still have the moments where I'm watching a St. Jude's commercial and feeling those things I felt pre-cancer. "Oh, those poor kids," and then having the (excuse my language) "Holy S---, my child has CANCER!" Because there's Cancer with a capital C, the thing you know before diagnosis, and then there's cancer with a little c-- that scary, annoying, and very real thing it becomes afer diagnosis.

And I think there's a vast chasm between the person who feels they shouldn't experience any pain in light of your circumstance and the person who is so completely self-focused, they don't even realize how ridiculous they sound. The "Oh, you're so lucky, you get to go on a Make-A-Wish trip" kind of person.

Nobody really WANTS to go on a Make-A-Wish trip.

Anyway, go ahead, you can complain to me about your problems. Don't feel guilty. I know canker sores still hurt.



Yet another person is shaving his head for St. Baldrick's this weekend! We are amazed by the strangers who are doing this in honor of Eve. Check out Michael's page here.

We had a great time at St. Baldrick's and encourage you to stop by one of their events if you have a chance. I promise, you [probably] won't find any hair in your beer.