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?"

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.

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.

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?)

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.

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.

FUNraiser

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

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

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."

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.

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.

Bruce Willis wins by a hair.

Who rocks the Kojak best of all?

32% of you said Charlie Brown.

28% of you said Uncle Fester.
39% of you said Bruce Willis.

I wonder who Ashton voted for?

Yesterday was our last trip to Rad-Onc for a while. They say she did well, as if she had a choice. It's not like you choose to lie still when you're on Propofol. Hopefully we won't have to see that particular sub-basement again until Eve's six-month follow-up appointment. Now it's time to scrub off all those sharpie crosshairs. FIN!

6 down, 0 to go. Back to counting down chemo treatments...

Eve's blood counts are up. We'll knock 'em back down this Friday for post-op chemo #2. But then we'll get them right back up again as all those little cells in Eve's body scream "Cuck Fancer!"

There is a light at the end of this proverbial tunnel.