Thursday, December 31, 2009

Happy New Year's Eve, Eve!

No chemo today, on account of Eve's ANC being 364 (up from 304 two days ago). In order to get the Doxorubicin and Dactinomycin, she will need an ANC of 750 or more. Thankfully the transfusion did a good job- her hemoglobin was 9.8. Oh well...we will try again Monday. What can you do?

Tomorrow marks the start of a new year! Here's to reaching our out-of-pocket all over again...

At least we can pay with our American Express and get rewards points. We should be able to redeem them for a small boat by the end of the year.

Sunday, December 27, 2009

Blood, pie, and a Calcutta Christmas.

It sure has been busy around here. Not sure why I'm so tired since Santa is the one who did all the hard work...

Thursday was a chemo day for Eve. Natalie was off from preschool, so she joined us on our weekly clinic trip. We left the house at 7:00 a.m. for a 45-minute journey of Natalie saying over and over again, "This is a loooooooooong ride. How many minutes until we get there?"

The ride did feel a bit longer than usual, but then again, we were hauling with us Chatty Cathy, the human egg timer. When it's Christmas Eve and there are no more days left to count down, we have discovered that four-year-olds will switch to minutes. These minutes are measured in millions, thousands, hundreds, and any combination of the three. "Is Santa coming in eight thousand-million-hundred minutes?"

It was nice to have Natalie there with Eve. Having big sis around puts a little more pep in Tiny Tim's step. Entering the Children's Health Center was quite fascinating for Natalie- it certainly made it hard to understand that this was a place where you came when you were sick. It was fabulous! Bright colors, beautiful paintings, toys, toys, and more toys, computers, giant fish tanks, and magic elevators that you can see through. "Is this where you come all the time with Eve, Mommy?" Yes, this is where we come when we take Eve to the doctor. "Why do I have to go to preschool? I want to come here!"

One thing about having cancer on Christmas Eve is that Santa will have already left you some presents at the clinic. Two nurses walked in with gifts for Eve to unwrap and even had a little something for Natalie. "I want to come again next week!!!"

Nat was pretty fascinated with the whole port-access process. ("So that's what they do to your bump!") The nurses let her push in the saline flush and the heparin lock. While we waited for the chemo from the pharmacy, Eve and Nat danced around the room while the doctor talked to us about Eve's blood work.

Her ANC had gotten back up into the 700s, but her hemoglobin dropped to 7.2. Not neutropenic anymore, but in need of a transfusion. He felt comfortable enough waiting until Saturday to do it, since she had an amazing amount of energy. (Thanks, Natalie!) We had arrived early in the event that she would need to be transfused, but apparently the whole cross-matching stuff takes a few hours, plus the 2.5 or so hours to give her the blood. This kind of stuff wasn't on Dark Shadows, so it was all new to me.

Eve isn't getting any hoarser and her gait remains unaffected, so she was given the full dose of Vincristine. Natalie was disappointed she wasn't allowed to administer that, but the nurse did let her help flush and lock the port when she was done. Natalie now wants to be a nurse when she grows up...or an apartment. (What do you think an apartment is, Natalie? "I don't know. Let's ask Daddy when he gets back. That's what I want to be when I'm big.")

9 down, 3 to go.

We arrived home to find a bag of presents from a Secret Santa on our front doorstep. Each family member had a gift and I didn't recognize the handwriting on the tags. Mysterious! But, it must be someone I know, because there were some Taco Bell bucks inside! I can't wait to go emotionally eat over there.

The stress of our situation has been getting to me a little, I'll admit. But what really put me over the edge were the Christmas decorations. I put up most of our decorations knowing that Eve would be stuck in the house all season. It all started one [terribly cold] day when I locked myself out of the house. Insert lots of obscenities and exclamation points here. When I finally got back in, I noticed the middle section of our miniature pre-lit Christmas tree had burned out. I profanely wondered aloud why a 3-foot Christmas tree had three sections of lights anyway when I walked into our living room and saw the big pre-lit tree had its middle section burned out, as well. Now the bad words were just spewing out of my mouth. Within the next 24 hours, the star on top of the tree, the lighted garland on our mantle, and the top section of the mini-tree would also burn out.

Could Jack Bauer even save this Christmas??

I got out the last of the cusswords, shoved handfuls of cookies in my mouth, and got to work. Fortunately, I had a fair collection of old strands of lights from the pre-pre-lit era that I unearthed in the garage. Out of these, three whole strands worked. But kudos to me for plugging them in first before putting them on the trees! I won't make that same mistake more than four or five times, no siree.

So, Christmas was allowed to go on as planned.

I have long given up hope of the kids eating anything we eat at dinner, so for Christmas Eve, my mom and I put on our short-order cook hats and whipped up a bizarre asssortment of the kids' favorite foods--peanut butter and jelly snowman sandwiches (Daniel), deviled eggs (Natalie), and boxed macaroni and cheese (Eve). We really went all out! Don't worry, there were some fruits and vegetables thrown in there to counteract all the sugar, sodium, and cholesterol.

The big people feasted on filets before we all squeezed into the minivan to look at Christmas lights. (Perhaps I should have eaten after the squeezing since I was in between Nat and Dan's booster seats.) There were the people who spent a lot of hours hanging lights from their houses. Then there were the people who threw a strand of lights into their Charlie Brown trees and called it a day. It didn't matter to the kids- they loved it all. And that's the best part about kids.

When we returned, we found the elves had left us new Christmas pajamas on our hearth. That's an exciting time of day in my book, because it signals bath time and bed! Daniel set out the cookies for Santa via the "one for him, one for me" method, while Natalie mixed up some chocolate milk to go with it. The reindeer food was sprinkled on the front lawn, and finally, time for bed.

Well, at least for them, it was. By the looks of it, Santa must have stayed up late wrapping all those gifts and eating all those cookies.

It was a fun Christmas morning for all of us as we went downstairs to see what the big guy had left us. Eve was excited to open her gifts just as much as the other kids. Natalie was convinced that Daniel got more presents than she did, only because she opened them up at record speed. By 8:00 a.m., Eve was dressed as Snow White, Natalie was Princess Tiana, and Daniel was flying around the house as Buzz Lightyear. He would remain in this costume most of the day.

Eve was more tired than usual and not interested in eating much of anything besides candy canes. She came downstairs after a nap and watched Christmas Vacation with us for a bit before she went back to bed. The transfusion was starting to look like a great idea.

After Thanksgiving, Matt and I decided we did not want a traditional Christmas dinner. Thankfully my parents are not picky and eat whatever I put in front of them, so I whipped up what looked like an Indian buffet. I'm not sure if anyone in India actually eats what I prepared, but no one questioned the names I made up as I directed them down the line of food. It was as far from a ham dinner as you can get.

An uneventfully eventful day.

We awoke yesterday morning no worse for the wear from the itis. Back to Duke. This time to the Day-Ho. Instead of a big comfy chair, we got to pick out our very own hospital room. Yesterday was the first day that Eve was a bit fussy for the nurse. She replaced the word "yes" with "no" for everything.

Nurse: Hi, Eve!
Eve: No.
Nurse: Did you have a good Christmas?
Eve: No.
Nurse: Did Santa bring you lots of presents?
Eve: No.
Nurse: Can I see your port?
Eve: NO.
Nurse: Please, can I lift up your shirt and see your port?
Eve: NOOO!

Once I got her shirt up, Eve was fine. But her initial general uncooperativeness made it obvious that she wasn't feeling well. I was more than ready for her to get this transfusion in hopes that she would get a little more energy and start to feel better. The child got a lot of cool things from Santa that she will need to protect from the clutches of her siblings, and there was no way she was going to do that in her state.

So, getting a transfusion was pretty easy. The nurse accessed her port and then hooked her up to a bag of blood. It dripped over a couple of hours while we sat on the bed watching tv. It was, at first, a bit gross to me to have a tube of someone else's blood draped across my legs as it filtered into Eve. But that didn't stop me from eating my chicken salad sandwich. Hey, it was lunch time!

Back home for nap time. I put Eve down and then got Nat up for her Christmas present from us- tickets to The Nutcracker. Nat decided she wanted to go out for pepperoni pizza, so we drove to the Mellow Mushroom in downtown Raleigh. "That mushroom is so funny, Mommy! Mushrooms make people act silly." It was nice to go out with just Natalie and not have to divide my attention. Just me and Natalie...and a small army of Littlest Pet Shop figurines.

I was pleasantly surprised to make it through the entire ballet. No bathroom emergencies. No whining about the show being too long. And for once, I wasn't the mom that everyone was turning around to stare at disapprovingly when their kid was acting up. A Christmas miracle!

After the ballet was over, I let Natalie pick what she wanted to get for dessert. "Pie!" So, off we went in search of pie.

Finding pie the day after Christmas is not as easy as one might expect. A surprising number of restaurants were still closed for the holiday. I started at the IHOP on Hillsborough Street. We were seated and brought menus and asked for our drink order. I cut to the chase and said we were only there for dessert. "Well, let me go check to make sure we have ice cream," the young waiter said. Actually, she wants pie. "Oh, we don't have pie." I'm sorry, I guess we'll try somewhere else. "Oh, let me get my manager and ask her if she knows where you can get some!"

So now, I'm in the middle of a busy IHOP, made to wait in front of a large group of people while the management discusses pie with Natalie. I seriously hate being looked at by people. (Imagine our wedding day. Stop staring at me, people! You're going to make me throw up!) Suddenly IHOP turns into Macy's from Miracle on 34th Street and they are sending me to Gimbles to get the pie that they don't have in stock.

We get back into the van and Nat starts singing a song about pie, which sounds very much like Bob Dylan singing Christmas carols. I missed the exit that I needed to take because someone maybe had not enough Christmas spirit (or maybe too much spirits?) and was forced to take the scenic route to Bob Evans. "Mommy, how many more minutes until I get my pie? Why can't I get strawberry pie? Why doesn't anyone grow strawberries in the winter? Why can't you get to the pie faster?"

All was well when we finally got the slice of pie. I ignored the looks from people who were staring at that woman bringing the four-year-old in for a sugar rush at 9:55 p.m. Hey, at least I'm not that parent bringing their toddler into the Walmart for an 11:30 beer run...yet. Don't push me, people. It's been a long couple of days.

Tuesday, December 22, 2009

Size Matters

Daniel wanted to come to the pediatrician with Eve yesterday. He was amazed by how well she handled her finger stick. Jeez, I prick my finger eight times a day and no one gets excited around here!

Eve's ANC is on the rise- it's up to 462 from 200 on Friday. Her hemoglobin was holding steady at 8.2, so no transfusion today. We do need to arrive at the clinic an hour earlier on Christmas Eve to allow some time in case she needs to be transfused before chemo. Unlikely, says the nurse, but you just never know. So basically, expect the unexpected. But if I'm expecting it, doesn't that make it expected? Be damned, Murphy and your law! I'm going to expect a speedy clinic day on Thursday.

One thing not to expect is that anyone else is going to look after your child as well as you will. It's at times a frightening realization to know that you are IT. Seriously, where did all these kids come from? I'm too young for this responsibility! I didn't go to medical school! I was a liberal arts major!!

Take, for example, the medicines your pediatrician prescribes to your young one to fight off an infection. I've never questioned it before. I just shake up that big pink bottle of amoxicillin and dispense to open mouths as written. But the next time the pharmacist asks, "Do you have any questions?", I will start with this one:

ARE YOU SURE THIS IS RIGHT?!? [This has been edited many times and it's as nice as I can word it right now.]

Eve is supposed to get 3.75 ml of Septra twice a day, every Monday, Tuesday, and Wednesday, to prevent a type of pneumonia that children undergoing chemo tend to develop. Running low on this concoction, the doctor faxes a script to Medco (the mail-away pharmacy). What arrived seemed a bit different. The label reads, "Take 0.75 ml twice a day, every Monday, Wednesday, and Friday." Interesting. This little bottle is a three-month supply, huh? I guess it's super-concentrated and the doctors want it spread out over the week now?


Human errors happen. But it's times like these that I'd like robots as Eve's pharmacists. Robots who have been programmed by other robots. Domo Arigato, Medco Roboto!

Speaking of machines, do you know there are programs out there on the internets that will predict how tall your child will be at age 18? You simply enter in your child's sex, height, weight, age, and the height of both mother and father.

According to the calculator I used at, Natalie will be 6'0", Daniel will be 6'3", and Eve will be...

drumroll please...

5 feet, 3 inches. We knew she was our Maggie Simpson! (Maybe Daniel won't be an entire foot taller than her on account of that Nasonex, though.)

Saturday, December 19, 2009


The following information is hearsay, although I heard it from my husband, so it's probably all true:

1. Eve doesn't have the slappy-foot.
2. Her ANC is 200.
3. Her hemoglobin is 8.2.

What do all these things mean for us?
1. No more blogging about defunct maternal instincts.
2. Eve is neutropenic, which means she is very susceptible to infection. No more letting her eat off of the floor.
3. We will need to get Eve's blood work done on Monday. If her hemoglobin drops below 8.0, she will need a transfusion this week before chemo.


So...where was I during chemo, you ask? I was partying with Nat and Dan at preschool! Natalie was Mary, all decked out in a robe and cowgirl boots. Daniel ate candy. That's the Reader's Digest version.

Eve took an extremely long nap yesterday, and when she did get up, she was pretty cranky. It took her quite some time to warm up to the idea of dinner. Finally, when it was time for bed, I kissed her goodnight, and out of her mouth popped the word "yogurt!" Ok, the girl finally wants to eat something, so back downstairs we go...

She ate some yogurt. Eve, do you want any chicken nuggets? "NO! No chicken nuggets," as she emphatically pushed the nuggets away. Back upstairs for the re-brushing of the teeth.

Again, I kissed her goodnight and tried to lay her down on her pillow, when out burst, "CHICKEN NUGGET!" Hmm...ok, let's try this again.

Back downstairs to the recently-shunned chicken nuggets. She slowly ate one before pushing the plate away again. Eve, do you want anymore chicken nuggets? "NO!! Night-night!" So, back upstairs to brush her teeth once again.

Another kiss goodnight. Another attempt to lay her down. Another "CHICKEN NUGGET!!!!" Another tired mommy gives in and goes back downstairs to rinse and repeat.

You can probably guess how it ended when I tried to lay her down after trip number four downstairs. "CHICKEN NUGGET!!!!!! NUGGET!!! NUGGGGGGGGGGGGET!" Eve, are you just playing Mommy? "Yeah. I play Mommy."


Tuesday, December 15, 2009'll know.

One of the [many] side effects of Vincristine is neuropathy. We are asked about Eve's gait each week. Is she stumbling? No more than usual. Is she falling down more often? Well, no, not for a two-year-old. Does she look like she's getting slappy-footed? Is slappy-foot even a real medical term? How will I know if she is?? Oh, you'll know.

But the thing is, I'm not sure I will.

Maybe I was absent the day that the maternal instinct fairy sprinkled her dust over my big, pregnant belly. (Maybe the stretch mark fairy left her no room?) Whatever it is, I am missing something in the instinct department. When I was pregnant with Natalie, I went to the obstetrician twice a week during my last trimester. Twice a week, I asked my doctor how I would know when I was in labor. Twice a week, the same annoyed doctor began to reply, "Oh, you'll know."

Imagine the doc's surprise when, eight months pregnant, I showed up for a regular appointment complaining of a backache. Apparently, I did not know that I was in active labor, even though I was five centimeters dilated. Had I not had an appointment scheduled for that day, I would have been at home watching Discovery Health and eating Taco Bell, probably giving birth to Natalie on our living room couch. Oh, apparently I didn't know afterall.

And the kids...the poor kids need to really be screaming for me to think they have an ear infection. They better be feverish, too. Because I won't know they just aren't acting right. Preschoolers never act right! I might be more inclined to think the kids are working on their catcher signals than pulling on their ears out of pain.

I never knew when they were teething. We just randomly put Orajel on their gums whenever they would get too fussy. Even if there was no pain to be numbed, it would shock them just enough to bring the screaming down a few notches.

So now that I am aware of this neuropathy side effect, and am equally aware of how easy it would be for me to miss it, I am doubting myself as of late. Each week the doctors seem a wee bit surprised that her stride has been unaffected. "She walks like normal...I think...I mean I'm pretty sure...I don't know...would I notice??" I'm worried that she's got the slappy-foot, and I haven't been paying attention.

But you'd think I'd notice, right? Right?

Thursday, December 10, 2009

Jesus the triops?

One thing we have have learned to expect lately is to expect nothing.

Wednesday night, as Natalie and Daniel were excitedly getting ready to see Disney on Ice, one of Eve's oncologists called. The doctors had been communicating with their counterparts across the country, discussing the images from Eve's CT scan. Eve's left kidney showed remarkable improvement- the tumors on that side have shrunk down so much, that the surgeon is confident he could go in and remove the lesions while leaving most of the kidney untouched. The right kidney also shows great improvement, but there are still many areas that would need to be removed. It has been decided to give Eve another 6 weeks of chemo in an effort to shrink these tumors down further, since she has been responding so well to treatment. The hope is to give the surgeon a better chance to be able to save some of the right kidney. So...westward ho! Eve Does Chemo: take two.

It was nice for Nat and Dan to do something with both Mommy and Daddy. The ice show was very cool (temperature pun, get it?). I enjoyed myself, too. The last ice skating event I had seen was an Ice Capades show featuring the Smurfs. Magic on ice was a long time coming for this momma! Nat is counting down the days until we can go next year, but with Eve.

Christmas crafts are in full swing at the Griffith house. Grandmas have been gluing pom poms to popsicle sticks, cutting out Christmas trees, and coloring cards. Everything is proudly displayed, no matter how Jackson Pollock it may be. Daniel brought home a manger he made in preschool of baby Jesus. "Baby Jesus is a triops. I gave him three eyes." (Indeed, baby Jesus is a triops, although he looks more like a bespeckled circus peanut to this art critic.) If beauty is in the eye of the beholder, things must be triply beautiful for Jesus the triops.

We left Christmas Cove this morning for Duke once again. Eve had her port accessed before we were sent downstairs for an echocardiogram. Her heart looked good and we were sent back upstairs. Chemo, game on!

The doctor showed us before and after images from the CT scans. Wowza! Massive difference. We can actually see some kidney now. We also watched as the oncologist tried to decipher the results of the genetic tests. First up, Christy Griffith. defect! Now the pressure is on Matt. And...he's defect-free! Looks like it's just bad luck that Eve has Wilms in both kidneys. Out of the 400-500 cases of Wilms diagnosed annually in the U.S., only 5% of those are bilateral.

Eve's ANC was 1065. She was all cleared for the full dose of Vincristine, in addition to Doxorubicin and Dactinomycin. The clinic was slammin' today, so we were sent down to the Jim Valvano Day Hospital. Heigh-ho, heigh-ho, we're off to the Day-Ho! It's basically a big room with oversized chairs, televisions, and IV poles. Eve got her Zofran drip to keep the nausea at bay before receiving the rest of the drugs.

One of the nurses signed Eve up for the Beads of Courage program. You get a string with your child's name on it, and the patient gets glass beads for various things. For instance, Eve gets a light green glass bead everytime she undergoes some sort of scan. So, she gets 9 beads for having a MRI, two CT scans, an X-ray, two echocardiograms, two ultrasounds, and an EKG. As you can guess, her string is pretty full of beads. She has beads for each chemo treatment, each time she's gotten poked with something...she even has one for losing her hair. Little Cindy-Lou Who's string is getting full, and we've only just begun!

7 down, 5 to go! (I'd hate to start over and say 1 down, 5 to go, because it seems kind of depressing to start from ground zero again. I'm not a glass is half-empty type of person. I'm not even a glass is half-full kind of person. I am more of a "You've got twice as much glass as you need" type person.)

Tuesday, December 8, 2009

Ketamine, not just for horses.

The only thing Eve was allowed to drink yesterday morning was some apple juice four hours before sedation. She woke up feeling a bit off, so she just took about one sip from her cup before it was time to hide it. I hid in the kitchen and scarfed down some "Honey Nut Scooters" while thinking about how weird it might be to later tell someone I hid and ate a bowl of scooters.

Eve and I left the house at 9 a.m. to head out to Duke for her CT scan. We went straight up to the oncology clinic to have her port accessed. Why get there at 10:00 when her CT scan isn't scheduled until 12:30, you ask? Get her accessed and then go downstairs to radiology, and you'll get in and out quicker! Right?


When I checked in at radiology, the woman at the desk looked at me like I was the Hamburglar; shocked that I was really there, terrified that my hungry daughter would steal her snack. You do know that your appointment is at 12:30, right? "That's right. I was told to come here at 10:30 so you guys could get my daughter in earlier." Then she said the letters O and K the way a highschooler would type it on her MySpace page: Ooooooooooooooooookkkkkkkkkkkkkk...

This was the first time I have taken Eve to Duke by myself. Matt has been with me every other time and I felt these trips were old hat by now, so I could totally handle it solo. What were we going there for anyway, but to put Eve to sleep? Obviously, since I'm typing this, I made it through there alive. But there were a good two hours when it wasn't pretty.

I got my hopes up when someone called Eve's name and walked us away from the reception area where we had been waiting. Down the hall we went...into another waiting room. This one was full of people. And I mean full! I'm talking a six pound sausage in a five pound casing kind of full. And about a third of those people were adults barely covered by their hospital gowns. There was a lot of pacing around and general merriment. I couldn't keep up with who was with who, and it made me wonder if this is what a key party in a hospital would look like.

Eve was not so happy. Amidst the soirée that was going on in the waiting room, she began to wail, "Pretzels!" (Think Marlon Brando yelling Stella!) "Pretzels! Pretzels! [Sobbing] Pretzels!" I know there is no reasoning with a two-year-old, but you always have to make it appear as if you are trying to reason with them for the sake of others around you. I can't let you have anything to eat right now, but after the doctor sees you, I will give you something to eat. Louder, "Pretzels!!!" I know you're hungry. We will eat soon. "PRETZELS!"

I was asked by a nurse to take Eve out into the hall and walk her around. Someone would find me when they were ready for her. Sure, I can do this. I just have to get Eve strapped back into the stroller. Darn, it's the plank!

For those of you not in-the-know, the "plank" is a move that, when executed properly, makes it impossible for an adult to get a child buckled into a stroller, carseat, shopping cart, etc. The participant must get their body completely straight and rigid, not allowing the parent to bend them in anyway that would allow for securing the child to the apparatus. I give Eve a 9.7 out of 10. Luckily, she got the hiccups and loosened up her body for a tenth of a second, just enough time to push her pelvis into the stroller and buckle her in against her will. Eve lets out a "CHICKEN NUGGET!" before I push her out the door, so cool and collected.

There was a lot of screaming in the hallway, but fortunately we were called back to an exam room. If only the child waking up from anesthesia across from us was not being fed pretzels. There is a lot of waiting. And some more waiting. And some screaming of the pretzel variety. It's now 12:30 and I am told that Eve will have to drink some contrast before the scan. And once she drinks it, she can have the scan an hour later.

Lord, thank you for the patience you have given me. But more importantly, thank you for the portable DVD player.

At 1:00, Eve got some Versed to take the edge off. I like this stuff. (Unfortunately, you can't get any to-go.) She was very chill and by 1:40, we were taken back to the CT room. While we waited for someone to do the scan, I amused the doctor and nurse with my Eve tricks. Eve, close your eyes! Eve, close your mouth! Eve, close your eyes! This is much cuter in person as my child cannot do these things at the same time. You'll just have to trust me on this.

By 1:55, we were ready to sedate Eve. I held her as the doctor adminstered Ketamine. I witnessed an interesting state called "dissociative sedation." I'm pretty sure Eve was experiencing things that you once had to go to Haight-Ashbury to experience. She wasn't asleep, yet she wasn't awake. Her pupils shook rapidly back and forth. I think she may have even seen herself floating above...herself.

I left the room while they performed the scan. In the waiting area, all the televisions were tuned to a program called "Verminators." I started to feel a teeny bit lightheaded from the combination of hunger and the images of cockroaches. Thankfully I was called back to the CT room after a few minutes.

I looked at Eve as she looked through me. Within a minute, she twitched and said, "Mommy!" and tried to blow me a kiss, although her arms weren't quite working. We went back to recovery and the nurse and I watched in amusement as drunk Eve stared at her finger for a good ten minutes, having some sort of unintelligible conversation with the pulse-ox monitor. By 2:45, she had eaten a graham cracker with no problems and we were cleared to go home at 3:00. We were home by 4:00, Eve asleep and myself starving.

I later overate (as my scooters had long since worn off), but indigestion took a back seat to excitement as Eve's oncologists called around 9:00 p.m. They had looked over the preliminary report from the radiologist, and it appears that both kidneys show improvement. Now we are waiting for the oncologists, radiologist, and surgeon to get together and discuss things in detail before we can meet with the surgeon to determine what the plan is.

And my fortune cookie reads: It could be better, but it's good enough.

Friday, December 4, 2009

Just stop talking and give me the forecast.

Yesterday I took Daniel to the ENT for his follow-up appointment. It appears that his adenoids are indeed shrinking, but they are still getting in the way of him breathing through his nose. The snoring has stopped, though. Now I have to check to make sure he's breathing when I sneak into his room at night. I'm not used to the silence.

The doctor told me we could either try to wait it out (some kids outgrow the enlarged adenoids) or we can have them removed. How long till he might outgrow it? No one knows. One year? Three years? It's anyone's guess. I am leaning toward taking them out. I do not want Daniel to be the boy drooling on himself in kindergarten because he can't breathe through his mouth.

One of the nurses at the ENT office commented on Daniel's cowboy boots. "It's good you have them because it's going to SNOW on Saturday!" Seriously? Do you think that was the right thing to tell my three-year-old? Do you have to drive home with him asking how many snow men and snow angels and snow cowboys we are going to make on Saturday?

I hadn't heard of us getting any snow, so I stayed up to watch the weather forecast on the 11:00 news. I have this problem...10 times out of 10, I never know what the forecast is after watching it. I make myself stand there three feet from the television and concentrate really hard but I always drift off. The weather person is talking so fast and going on and on about pressure systems and barometric tendencies and El Niño that I am reminded of how much I disliked meteorology in college and while I'm remembering that, I've completely missed the whole forecast.

I don't want a meteorology lesson. I don't care why this weather is happening. I just want to know if I'll need a coat tomorrow.

Since I missed the weather report once again, I went to our local news station's website and discovered we might get about four snowflakes on Saturday before it gets mixed in with rain. (I'm not sure why I didn't check online in the first place.) I don't know how many snow cowboys we'll get to make with that.

Today was our last chemo day for the interim. Unfortunately, there was an accident on the Durham Freeway, so we arrived at 9:30 instead of 9:00. Thirty minutes might not seem like a big deal, but trust me, it is. The clinic parking area was full. We had to park in the -gasp- parking deck! Farther away and more expensive. It's not the short walk that gets me, it's the trying to find the van afterward. Our van is much harder for me to find now that I took the duct tape off of the back.

Another drawback to arriving after the clinic has been open for thirty minutes is being in the back of the line. We have been so used to going right back to an exam room upon arrival that sitting in the waiting room felt very strange. I'm pretty mediocre at the waiting game anyway, but today I felt myself watching the clock more than usual. We put Emla cream on Eve's port to numb it, and it only works for four hours. We have been told we cannot reapply it. Eek! We put the cream on her at 8:00 before we left the house and it was already 10:15.

We were finally taken back to get Eve's vitals around 10:20. Her blood pressure was good and she hasn't lost any weight. The exam rooms were packed, so we were sent back out to the waiting room. Did I mention I'm not good at waiting? I just wanted her port accessed before that cream wore off. It was getting all kinds of Jack Bauer in my head! Could she be accessed within the hour??

She could. The nurse took her back to a room around 10:45 and her port was accessed at 11:00. Whew! Crisis averted.

Eve is a pro at conversing with adults. In reality, she is just repeating everything she hears. Today she set a record for keeping up the ruse.

Nurse: Did you have a good week?
Eve: Yeah, had good week.
Nurse: Did you do anything fun?
Eve: Yeah, fun.
Nurse: Did you decorate your house for Christmas?
Eve: Yeah, decorate house Christmas.
Nurse: Do you have a Christmas tree?
Eve: Yeah, have Christmas tree.
Nurse: Do you have a favorite ornament?
Eve: Yeah, have favorite ornament.
Nurse: What is your favorite ornament?
Eve: Yeah.

Blood counts look good- her ANC was up to 1276.

Since Eve seems to have recovered from the choking fits she was having when she drank, the doctors increased her dose of Vincristine to 75% of her normal dose. After that was done, we headed downstairs so she could get her second H1N1 vaccination at the flu clinic. Matt took her back to get the shot and she was done before I could finish eavesdropping on some lady's phone call. It sounded pretty interesting, too! Don't judge me.

Tonight we decided that Eve's ANC was high enough to let her sleep in Natalie's room instead of ours. Tonight I'm going to turn on all the lights when I put on my pajamas! I've been waking up in some really interesting outfits lately.

Wednesday, December 2, 2009

Are you there, God? It's me, Daniel.

Does this count as Nat's first love letter? There's definitely a LOT of love in this letter.

I transcribed Daniel's eloquent words. I'm glad he knows the meaning of Christmas has more to do with God than snowmen, but apparently he's under the impression that Santa is one of Jesus's aliases.

Tuesday, December 1, 2009

And THIS is why I'm on a Google Sabbatical.

Ok, so first things first. Let me go ahead and be a big baby over this dang canker sore. I know, I know, Eve has cancer. But my mouth really hurts!

It started on Thanksgiving. A pretty large canker sore appeared on the side of my tongue, right where it rubs my teeth. I took Thanksgiving dinner slow, as it hurt terribly to move my tongue around. And the resentment starts. I have nothing but ire for things that get in the way of my favorite pastime: eating. Food and me go waaaaaaay back.

Luckily, there are random tubes of Baby Orajel around the house, half-used from teething children. That provided enough relief for about 3 minutes of turkey time. This sissy stuff has got to go- off to get some adult Orajel!

Ok, so big people Orajel stings twice as much before your mouth goes numb and lasts about 5 extra minutes. Kind of worth it if you can eat fast. Hard to eat fast with a giant ulcer in your mouth, though. Once my tongue is asleep, I start to eat and realize my throat hurts when I swallow. Is there a canker sore in my throat?? Better get some Chloraseptic on that. Nothing like having your mouth squirted with something that tastes like cherry-flavored bandaids. NOW I'm ready to give it a go! Bring on the food!

But wait! What the heck is that? MY EAR! Is there a canker sore next to my ear canal? The pain comes on quick several times a day. Nothing a fistful of Motrin can't handle.

By Monday, I'm pretty mad. I have not had any yummy snacks to stuff my face with while I Hulu old television shows because it hurts too bad. Watching 21 Jump Street without chips and dip is like watching 21 Jump Street without Johnny Depp! (Who even watched Season 5, anyway?) I got a quick fix by swishing with warm salt water. Mmm...sodium.

Matt came home from the drugstore with something called "Canker Cover." It's this little patch that turns into a gel which covers your sore for 12 hours. There is a disclaimer on the box: Some discomfort may occur during the first few minutes for a small number of users, but will quickly subside followed by hours of soothing relief. Holy moly. This is not a joke. If you want to impress party guests by crying on command, carry some of these in your wallet. The pain subsided after 10 minutes or so and the patch began to turn into this strange substance that felt like I had packing tape in my mouth. I woke up the next morning with my tongue glued to my molars. It stayed on for exactly 12 hours and came off in what looked like, for lack of better words, a giant snot ball.

I mixed up equal parts of liquid Benadryl and Maalox and swished that around my mouth while typing "canker sore" into Google. Lots of websites with remedies come up. I see multiple sites that inform me canker sores are caused by trauma or stress, so I should just stop being so stressed out and it will make things better. Thanks, internets!

Next I type in "canker sore ear ache." While the first 7 results showed me that other people experience ear aches with canker sores (so maybe I'm NOT [that] crazy), the title of the 8th was a bit distressing. Oral Cancer Facts. Wha, wha, what? "...Actual cancer while it is still very small...may appear as a...common canker sore...Unilateral persistent ear ache can also be a warning sign." Hold the phone, Pat Sajak, I typed canKer, not canCer.

Time to stop Googling.

I took Eve to the pediatrician's office today for her blood work. She makes me feel really bad whining about a stupid canker sore. I need some of this girl's chutzpah.

As soon as we sit down in the exam room, Eve holds up her finger to the nurse and says, "Boo-boo, finger, bandaid." She knows the drill. Watching her get a finger stick gives me wild ideas of checking her blood sugar at home. Eve doesn't flinch and marvels at the pretty blood. "Pwetty wed bwood!" Her ANC has dropped to 734. I'm not sure if it will be higher on Friday or not...the first time she had Doxorubicin and Dactinomycin, it took a full 14 days to bottom out before coming back up. The ordinary time is 7-10 days, though Eve is anything but ordinary.

I find myself extremely anxious for Friday's clinic to get here. I want to be done with Phase 1 of this process. Eve will have a CT scan on Monday and then we will meet with her surgeon to determine if she will be able to have surgery the following week, or if she will need another 6 weeks of chemo to shrink the tumors further. I do not want this to turn into a DOT project with no end in sight. While it feels strange to say out loud that you want your child to have surgery, I'm fine with typing it here. Bring on the knife!

Sunday, November 29, 2009

Friday, November 27, 2009

Black Friday Special: Vincristine, Half-Off!

Yesterday, I cooked for the first time in five weeks. My body has been out of kitchen shape- standing in there all day long fixing Thanksgiving dinner really did a number on my shins! Lesson learned: don't cook barefoot for hours on end in a house that is on a slab.

Eve has been noticeably tired the past few days. She also hasn't been very interested in eating (except for the pumpkin pie). But we did have something very important to be thankful for- Eve dirtied up some diapers after a few days of holding out on us! Exclamation point!

On clinic mornings, I'm usually up before a lot of my friends. Today was an exception- crazy people everywhere were up hours before dawn to go bargain shopping! Normally, I would happily be a part of this crowd, but this year I had many people shopping in my honor while we left for chemo. The roads were clear on the way out to Durham and we arrived in record time, even after leaving late. Black Friday rocks the house already.

We checked in and were immediately taken back. We met a new nurse today who marveled at Eve's awesomeness. This girl can handle a port access like nobody's business! The labs came back quickly, probably since there was NO ONE at the clinic. Eve's blood work looks good- her ANC is 2750. Her counts should start to drop this week.

Eve is still a bit hoarse and the coughing has returned when she drinks, but the doctors decide it is better to press on with treatment than to skip another dose. She received half a dose of Vincristine. The pharmacy took no time at all to make this, on account of us being the only people in the triangle area not shopping.

This was the quickest chemo ever. We were done at 10:47 a.m. Just enough time to get in some last minute doorbusters! I bet we could have gotten to the front of the lines if we had walked in with Eve in a mask.

5 down, 1 to go!

Monday, November 23, 2009

Don't fly to Mexico for apricot pits.

You know it's going to be a good day when the oncologist leaves you a message saying she has good news. After reading the radiologist's report from Friday's ultrasound, the largest tumor appears to have shrunk by fifty percent. Eve's going all Chuck Norris on these bad boys!

Eve does not sleep; she waits.
Eve doesn't read books; she stares them down until she gets the information she needs.
When Eve does a push-up, she isn't lifting herself up, she's pushing the Earth down.

The ultrasound was done after just three weeks of chemo. (Her fourth treatment was immediately following the ultrasound.) One doctor was so confident in these drugs that she begged us not to fly to Mexico for apricot pits. Because I guess we looked like the type that was going to reject modern medicine, hop a plane to Tijuana, and hope for the best.

Eve doesn't seem as hoarse as she did over the weekend and she's not having major coughing fits after she drinks. Hopefully she will be ready for her half-dose of Vincristine on Friday. Now the question is, can I get up and get all my Christmas shopping done that morning before we have to leave for the clinic at 8:00? Yeah...I feel an Amazon Christmas coming on.

My morning only got better as I partied hardy with Nat and Dan at preschool. (Or did I party hearty? This is one thing I'll probably never learn the answer to, much like how to pronounce nonpareils.) I arrived at Natalie's Thanksgiving party first and watched her proudly give all of her classmates the squirts. Oh, and the restraint she showed by resisting those chicken nuggets in front of her until they said their blessing! She wisely passed up the carrots, as she needed to save room for mandatory brownies and cookies. "This is a feast!" she declared. Her friend added, "This is the best Thanksgiving feast ever!"

Now I have a back-up menu in case I am too tired to do the turkey thing on Thursday.

Nat gave me permission to leave her party for "four minutes, not five" to visit Daniel's room. He was quietly eating a ham and cheese sandwich. And black olives. And green olives. What? Is this my kid? According to his teachers, he's the best eater in his class. WHAT? He always asks for seconds. WHAT WHAT? DANIEL GRIFFITH?? Can this morning be any more eventful?

Now here comes the part of the post where we do the mandatory "I am thankful for..." stuff. I mean, there's a lot that's going on right now, but it helps show us how lucky we are in so many ways. Here is a short list:

I am thankful for... unaffected Eve's spirit seems to be. well she is responding to treatment. cooperative she is.
...our family, friends, and neighbors, and their love and support.
...Nat and Dan's turkey-hand artwork.

Dan also had a list he dictated to his preschool teacher. He is thankful for the following things, in this order:
1. Firefighters
2. Cookies
3. My blankie
4. Toys
5. Sam, the one with the yellow shirt.

I will be thankful next year if I can edge out the yellow Wiggle in the top five.

Saturday, November 21, 2009


Yesterday was the kind of day that just doesn't know when to call it quits. Much like a guest at a party who is still downstairs drinking when the hosts have long since gone to bed.

(Don't be that guy.)

We left the house at 7:30 for our 8:30 ultrasound appointment. The oncologists wanted to see how the tumors are shrinking. I agreed to let Eve out of the stroller for the first time to play in the waiting area, and as a girl the same size came over to play next to her, all of a sudden it struck me how sad it is that she hasn't played with anyone besides her siblings in a month. The only kids she sees nowadays look a lot like her- balding, faces hidden behind masks.

(I can now understand why people go ahead and shave their heads once they start losing their hair. You have two choices: cut it all off, or find it in your food. I could have sworn I had a bug up my nose the other day, only to find one of Eve's hairs had made its way up there. And starting the day off hacking up a hairball will NOT land you on People's Sexiest list of 2009.)

We were taken back for our ultrasound, and once again, Eve was excellent. Her cooperation really amazes me and everyone who sees her at Duke. Can you picture your two-year-old being patient for not one, not two, but a two and a half hour ultrasound experience? The poor sonographer kept leaving to show the radiologist the images, and he kept asking for more. It felt a little like the man behind the curtain in the Emerald City.

It takes a few days for radiology to write up a full report, so we won't know anything until next week. But, for what it's worth, Eve's oncologist said he could barely feel the tumor and could now feel her liver, which is what her pediatrician was trying to feel when he came upon the mass.

Eve didn't even flinch when the nurse accessed her port. She just says "okay" to anything anyone dressed in scrubs or a lab coat asks her. Whatev!

Her ANC was 1330, up from 891 on Tuesday. The hospital staff speaks in abbreviations and acronyms whenever possible. Before Eve's very first chemo, I heard the doctor say, "I want a repeat LFT and ANC before chemo and then we can do the DOG."

Umm, doc, what's an ANC?
"Oh, that's the absolute neutrophil count."
Ok, then what's an LFT?
"That is a liver function test."
Then, what is a DOG?

After deciding my second and third heads were a figment of her imagination, "You know, like ruff ruff?"

Yeah, there was an actual dog who was in the hospital to walk around and cheer up kids. I guess they didn't want to say the word in front of me in case I got too excited.

Eve's energy level has been good and she even gained a little weight since her visit last week. However, she has been hoarse since Monday. Vincristine can cause paralysis of the vocal chords and can slow down your body's reflexes. This explains why Eve has also been choking on her drinks- her airway is slow to close, so liquids really are going down the wrong way. The doctors decided to skip the Vincristine this week and pick it up at a half-dose next week, provided her hoarseness is gone. Better to skip it than to shower her lungs with apple juice.

Yesterday she received Dactinomycin and Doxorubicin. These are the ones that will drop Eve's blood counts again in a week or so. They also cause nausea, so we are pumping her full of Zofran to make it through the weekend without getting sick. She woke up this morning looking a little nauseated, but by mid-morning had requested and eaten a hot dog, pot roast and carrots, and a granola bar. We are being strict with the Zofran, because at least two of those foods you do not want to see or smell making an encore.

4 down, 2 to go!

Wednesday, November 18, 2009

The squirts.

If you want to see people move out of your way, put a mask on your kid. They will leave you plenty of personal space, trust me.

We have to put a mask on Eve anytime she goes into the pediatrician's office or the clinic. Every Tuesday, she gets her blood work done at pediatrician's office. On Friday, her ANC was 500. On Tuesday, it was up to 891. Even better news- her blood pressure was 80/44! A far cry from the 160/120 reading when she was first in the hospital.

I bribed Daniel on Tuesday with ice cream if he would stay and play soccer the entire length of the class. It worked! Luckily, kids scoops at Baskin Robbins are only $1.59, in the event that I have set myself up to do this every week. Ice cream and donuts aren't a bad lunch...right?

Dan's coach gave him a bag of "goodies" that he insisted I open up so he could devour whatever was inside. I, being able to read, knew that the bag was not full of gummy worms as he had hoped, but was an individually packaged 'Wet Ones' wipe. Dan still did not believe me after I opened it and unfolded the wipe, so he proceeded to sanitize his tongue.

Natalie likes to tell me interesting things about her preschool teacher. "Mommy, Miss Jaye gives me the squirts." I won't lie-- this got my attention. What, Natalie? Again, "Miss Jaye gives me the squirts." How exactly does she give you the squirts? "I get the squirts when I put my finger in my mouth or in my nose or play outside. She puts the squirts in my hand just like at home!"

Ahhh...hand sanitizer.

Today, Natalie and I went on a field trip to Wake Christian Academy. She was excited to see real kindergartners in action. Before they got to play, the preschool kids got to watch the 4th graders put on a play about being thankful. (Kudos to those 4th graders who memorized words I can't even spell, and double kudos to those 4-year-olds who sat still and watched!) The highlight for me was one adorable boy whose cuteness was only matched by his thick southern accent. He played William Tyndale, the Englishman responsible for translating much of the Bible into English. Imagine, in his sweet Opie Taylor voice: "I was born and raised in England and studied at Oxford." As I tried to hold in a giggle, I glanced over to the podium which was painted with the words Wake Christian Academy. Underneath that was a sign that read: No Food! No Drink! No Playing! Did I mention we were in the cafeteria?

Nat is so in love with "kindergarten school" that she is now counting down the days until she turns five. That comes out to be around "46-million-hundred" days.

After the field trip, I picked up Dan from preschool. He appeared from the church in his cowboy boots and hat. After buckling him in, he asked if I could be his hussy when we got home. Interesting proposition, unless you know that he can't say his R's yet. Neigh, neigh! Watch out, Mr. Ed. You've got nothing on this hussy!

Sunday, November 15, 2009

Uncle Murray

If it weren't for the male pattern baldness, you would not even know little Evie is undergoing chemo. She is most definitely thinning on the top, and will probably look like an Uncle Murray very soon, though without the creepy mustache.

My mother-in-law points out that it's a good thing that I have stopped making cakes for a while. No one wants to bite into a cupcake with hair in it. I baked a loaf of bread tonight and the first piece I sliced into had a hair baked right into the crust. I tried to tell Matt and his mom that it meant it was "artisan" bread. Blood, sweat, tears...and hair.

After the kids went down last night, I briefly left the confines of our bubble to go out for sushi with some great friends. It's the first time I've been out since Eve's birthday. Raw fish and karaoke do a soul good. Bonus: we got to enjoy the artistic stylings of Pat from Saturday Night Live! There is definitely nothing better than sexually ambiguous background music to aid in the digestion of sushi.

It was good to go out and remind myself that the world had the audacity to continue turning after Eve's diagnosis. Now I just need to try to keep up.

I just got some pretty awful news that my good friend lost her brother last night. It really puts things into perspective, as there is always someone who is dealt a worse card than you. Another family friend lost her mother yesterday evening as well. I pray that they can find peace with time.

Friday, November 13, 2009

Paco the cat

As far as Friday the 13th's go, this one has been pretty good. (I mean, the cancer thing, not so great, but what can you do?)

Eve is now giving herself medicine with the syringe. Natalie and Daniel cheer her on when she does this. Natalie also does a song and dance when Eve poops.

We headed out to Duke around 8:15, arriving a little bit before 9:00. Matt did the advanced registration online which saved some time when we got there. I gave Eve her morning Dum-Dum and then we were pretty much immediately taken back to the exam room. Eve has amazed me by how cooperative she is. You honestly couldn't ask for a better patient. Matt and I have talked about how the situation would be if the two-year-old versions of Nat or Dan were going through Eve's situation...these visions aren't pretty. I'm sure there would be lots of blood involved, mainly from us, as they scratched and pummeled their way onto our laps and away from the doctors.

Eve's ANC was 500. A normal person would be in the 1500-2000 range. Hopefully her counts are on the rise. We just need to be vigilant about keeping her away from cooties, particularly the ones that have arms and legs called siblings. Eve has a standing order for blood work at the pediatrician's office, so we will go on Tuesday to make sure everything is on the upswing.

She has lost about a pound since the beginning of chemo. Not a big deal if you are 150 pounds, but when you are starting out at 26, things are different. Nothing much to do about that right now, except make sure she's eating well (or as well as can be expected). I'd say Dum-Dums account for 10% of her caloric intake. Does grape flavor count as a fruit?

The best part of our visit was hearing Dr. Wechsler say that he had a very hard time trying to feel the largest tumor. Next week, Eve will have an ultrasound to check out her kidneys and these SOBs called Wilms. Even though these tumors grow like weeds (they double in size every 18 days), they also [usually] respond well to chemotherapy.

The three hours we waited in the exam room for the chemo went by surprisingly fast. Eve ate her lunch and happily watched "Doe Wipe" (Snow White). She barely noticed when she got the chemo, and soon after, we were packing up and out the door. Home by 1:30! Friday the 13th, you can kiss it.

3 down, 3 to go.

I've been thinking lately about Paco the cat. We adopted Paco from the SPCA a long time ago. He was so sweet and laid back. The kind of cat that would just lay in your lap and not move too much. Then we found out he had something medically wrong with him...the veterinarian gave him this magical shot of something or another, and all of a sudden Paco was a different animal. He was not sweet anymore, not even remotely nice. The kind of animal who thirsted for fresh blood (he was vampire before vampire was cool). Paco is long gone from our lives, but I find myself having strange thoughts of Eve turning on us when this is all said and done. She's already started shedding like a cat.

Thursday, November 12, 2009

Sickos Anonymous

Watch out, ghost of Kojak! It's coming out.

We were told to expect Eve's hair to start falling out 2-3 weeks after the start of chemo. The two week mark was yesterday, and sure enough, I saw Eve amusing herself by pulling out her hair. Not nearly as traumatic as I had envisioned. I think her head will be noticeably thinned out by the weekend.

I posted the news on Facebook yesterday morning, and I quickly realized how demented my friends are. So far, 9 people clicked the "like" button under this:

The hair is coming out. It seems to amuse Eve that she can pull on her hair and it comes out in her hand. She should be bald by bedtime at this rate!

Of the 22 comments that followed, my favorite was from a friend whom shall remain nameless, with the suggestions that I save the hair and:
A) Make a wig for a doll out of it
B) Make a construction paper face and glue the hair to it
C) Follow suggestion B, but use glitter glue.

Tuesday, November 10, 2009


I'm convinced that Dan is overwilmed (get it?) with how our lives are right now. I let him watch TV in our room while I got a shower. Before I left him, I turned it on Sesame Street. Sitting Indian style, he appeared interested in the programming. When I checked on him after my shower, he was watching static. Sitting Indian style, he appeared interested in the programming. Either he was trying to convince Carol Anne not to go into the light, or he wasn't lying when he told me he didn't feel anything.

Natalie was sad I couldn't take her to ballet today. I told her I would go with her next week. My friend has been taking her every week and I am so grateful for that...we really want to keep the kids on their normal schedule. I would have liked to have gone and see her dance, but I had to get Dan ready for soccer while Matt took Eve to get some blood work at the pediatrician's office. No matter how hard I try, I cannot be in multiple places at once. I am not Santa Claus.

Matt got home with Eve in time for me to find out that Eve's ANC (Absolute Neutrophil Count) was 602- under 500 and you are considered neutropenic, meaning you are at a very high risk of getting an infection. Dan and I rushed out the door to head out to soccer. I did my best to get him pumped up. We talked about soccer the whole ride out there.

As soon as we got there, he decided he needed to use the restroom. When we were done washing hands, he asked, "Where is the hand sanitizer?" Good to know something is rubbing off! Any of you who know me personally know that I am not a germophobe. This is the girl who once watched 2-year-old Natalie bury a cracker in the mulch at the playground and the next day watched her dig it back up and eat it. Did I freak out? No. Do I freak out when someone breathes in Eve's direction nowadays? Absolutely.

Dan's soccer class is 50 minutes. 20 minutes into it, he just walks out and heads toward the exit. No tears, no anger, just says he wants to go home. I bribed him to stay with ice cream. He thought about it and decided he did not want any. I told him he was free to go, but he had to go tell his coach he was leaving so the coach wouldn't worry about him. Dan gave a half-hearted goodbye, and we were on our way back to the van. I explained to him that this meant no ice cream- he responded that he didn't want any ice cream. He told me three times on the way home that he wanted no ice cream. Until we pulled into our driveway. Where is my ice cream?!? I want my ice cream!!!

After chasing him outside around our house, then around our neighbors' house, then around our house again, I finally caught the screaming child and wrestled him inside. Had I wanted exercise, I would have signed up for the Mommy and Me version of the soccer class.

Coming back into the house, you will usually see a stack of of mail, and on top there is bound to be a thick envelope from Duke University Health System (or DUHS, as is written all over the hospital...I'm convinced they spray painted that on the back of the wheelchairs for my amusement). When this whole cancer thing started out, the last thing on my mind was money. You just want your child better. That's it. But then people started giving us money here and there. Some of whom don't know me from an alley cat. (How amazing are these people?!) Which made me think for the first time, Oh crap! We actually have to pay for this stuff!!! After seeing some of the bills in which there are multiple radiology charges, Matt and I have a vision in our heads of radiologists sitting around a big table, passing Eve's scans back and forth. Each time it comes into their hands, a tick mark is added to the bill. "Pass that scan back over here! I'm saving up for Cabo!"

It's comforting to know that we are not the only ones going through this, though. And then I feel like a bad person for finding comfort in the fact that there are other people going through this.

And cliché as it may sound, it really is a small world. When I first began my email campaign to your inboxes, I got so many responses from people who had friends or family that had been through Wilms. One good friend from home sent my emails to her aunt, who is friends with the mother of one of the 14 kids in the original bilateral trial (See: Monday, October 26, 2009, part 2). I found out over the weekend that an old coworker's one-year-old daughter was diagnosed with Wilms back in June and has now finished up chemo. What are the odds?

I do feel as though I am in a position to comfort my friends. If they are anything like me, I am sure they have pictured what it would be like to have their own child stricken with cancer, and the thought is pretty upsetting. But when it is your reality, you just have to do what you have to do. I don't really have a lot of time to be upset right now- Nat, Dan, and Eve won't allow it.

Maybe I just made some more time for myself, though--- I went out to get a major haircut. Like, enough hair on the floor to make it look as though Edward Scissorhands and Axl Rose really got into it. I wanted something that I could spend 60 seconds on, tops. More time for being with the kids. Those minutes really add up when you think about how fast they are growing.

(Although Dan might not be growing anymore on account of the Nasonex.)

Monday, November 9, 2009

Lawn chairs and hiney coughs.

Eve let us give her medicine not once, but twice in one day! We are beyond happy with this. It did make Natalie break down in tears, as Eve took her medicine so quickly that Nat missed the event when she and Daniel went to get their lawn chairs (See: Wow, I just started a blog).

Eve seemed a tad more tired, earlier than usual, so I put her down for an early nap. She slept several hours. She still appears to be in high spirits, though. There's just a lot of stuff going on in that little body of hers, and some rest is bound to do it good.

We kept Natalie home from school today because she had the tail end of a cold going on. Since she was upset that she couldn't go, Matt promised her I would let her play with scissors and glue (I guess this is what he pictures her doing at preschool). She made cards for everyone in her preschool class, and two of them were to boys with "I love you" and "XOXO" written on the inside. Do I sense a Dwight-Andy duel coming on?

I do think Nat is sad that Eve is not sleeping in her room right now. Eve is sleeping in our room while her counts are low, and especially now that Nat is getting over that cold. No one beyond Eve has been sleeping well. Last night I made the mistake of reading some CaringBridge pages and blogs of kids with cancer and I could not get to sleep for hours. I just laid in bed seeing those faces over and over again. Just when I did start to doze off, Nat starts screaming in her room. She had a bad dream that her preschool friends were kicking her. I laid next to her for a little while, but no way could I go to sleep in that bed- it's so uncomfortable for anyone over 60 pounds. I crept back into our room and fell asleep for about 2 hours only to wake up to Eve crying. Apparently Daniel had snuck into our room and turned on the lights and then left. I turned off the lights and got another 2 hours sleep.

Daniel used to be our best sleeper. He would go down for naps no problem and sleep for hours. Then he'd go to bed and sleep until Natalie burst into his room and woke him up. Ever since all this craziness started, he has been the one not sleeping. Naptimes are horrible. I tried to take a nap today on the couch, but he kept coming out of his room and and jumping on me. When I sent him back upstairs to his room, he'd let all the Irish people out of his closet and they did Riverdance above my head.

If Dan doesn't sleep well, no one has a great day. He gets all crazy like Kanye West having a temper tantrum. And we know when it's going to be one of those days when we are awakened at 4:30 a.m. by Plaza Sesamo, and it's Daniel holding the remote.

But one thing that Dan does well is claiming the toot that escapes the place we never mention at at the dinner table. He is a true boy in the fact that he not only tells you he did it, but he is damn proud of it. Natalie doesn't get embarrassed by this phenomenon when it happens to her, but she has found a loophole in the "excuse me" rule. You need to excuse yourself when you belch or pass gas. But, if your hiney is simply coughing, no need to be excused.

Who knew my world would shrink down to tallying poops and blogging about gas?

Sunday, November 8, 2009

The C Word

First things first--- Eve had a wonderful weekend. Absolutely nothing to complain about. She even let me give her medicine today! We look at her and think, this child has cancer???

If Matt and I weren't aware of what the word oncology meant, we wouldn't have known Eve had cancer until two days after we were admitted to the hospital. No one spoke the C word. No one. There was lots of talk of chemotherapy, tumors, the Children's Oncology Group...but it wasn't until that Sunday evening that one of the doctors used the word "cancer." Not that we were in denial of what was going on, but hearing the word for the first time kind of knocks the wind out of you.

Now two weeks into this, we can make tacky jokes around our house. "Give her some chocolate milk...she has CANCER!" "Cancer trumps swine flu!" "She has cancer; don't make her sit in time out. Daniel will get over her kicking him in the head."

Natalie and Daniel are now officially card-carrying members of SuperSibs! It's a cool program for siblings of cancer patients. They receive things in the mail throughout the year. Their first packages came with coloring books, tattoos, bracelets (think Lance Armstrong), and membership cards with their names on them. The best thing in the packages were the "How I'm Feeling Today" magnets. The kids can put a special magnet frame over the face that best describes how they are feeling. Natalie likes the face with the tongue sticking out, so she decides she is also feeling "overwhelmed." Daniel says he doesn't feel anything, which I take to mean he is numb. Hopefully it is comfortable.

Saturday, November 7, 2009

30 seconds of chemo, 8 am- 4:30 pm!

Yesterday was one of those days that I almost bought a cup of regular coffee. Nine months of decaf nearly down the tubes!

We left the house at 8:00 to head over to the hematology-oncology clinic at Duke. (This is referred to as Hem-Onc by the staff at the hospital. I swear I thought they were making donkey noises the first few times I heard it.) The first thirty minutes were spent traveling the two miles to US 1. It's always bumper-to-bumper heading out that way, but yesterday morning was especially backed up due to a tar truck overturning on Highway 55. I hope they put the tar to good use and filled in some pot holes! Make lemonade, I always say.

Checked-in at the clinic.

Called back for our 9:00 appointment. Eve's vitals are taken.

Nurse accesses port and draws Eve's blood. We put a cream called Emla on Eve's port site right before we left our house. It is a numbing cream, and apparently it works well- according to the nurse, Eve was "phenomenal" during her first port access.

We talk to doctors and wait in the exam room while the lab checks Eve's blood. The doctor feels Eve's abdomen and notes that it doesn't appear to be as firm as when he felt it two weeks ago. If we didn't already love the doctors at Duke so much, this just sealed the deal. Hope! Progress!! Dr. Wechsler is also pleased with the amount of energy Eve has.

Lab results are back and Eve gets the OK for chemo. We are told chemo should take about an hour for the pharmacy to prepare.

We are starving and decide to go down to the cafeteria for lunch. I watch the sushi chef roll things which are labeled with a "Ninja Special" sticker.

My phone is so buried under coloring books, blankets, and princess paraphernalia, that I miss a phone call.

I check my voice mail as we get on the elevator to the clinic. YESSS! Chemo is ready. We should just tell the front desk we are back for chemo and we should be ready to start.

Checked back in with the front desk at the clinic.

We are whisked away to start chemo.

Our chemo nurse is called away for an emergency.

Nurse returns and sets up for 5 minutes. We get another Beware of Constipation! warning. Nurse is very nice and talks "to" Eve, rather than "at" her. She puts a hospital bracelet onto Eve's leg.

Nurse gives Eve chemo.

Nurse takes off hospital bracelet, removes needles from port, and sends us on our way.

We go downstairs to the nephrology clinic and check-in for our 2:15 appointment. Eve is asleep on my shoulder. Matt is given form after form to fill out. (Apparently clinics in the hospital do not share medical records.) I can see his hand start to cramp.

We are taken back to the exam room. Eve is still asleep. A nurse comes in and says she needs to get Eve's height, weight, and blood pressure, which were just taken at 9:30. I have serious doubts that she has grown any taller since we have been here. Matt suggests the nurse call upstairs to the HEM-ONC clinic to get that information instead of waking up Eve.

Nurse returns and says she has Eve's weight and BP, but will need to wake Eve up to measure her, as she was told Eve was only 25 cm long. Matt goes upstairs and gets the correct information himself.

The nephrologist comes in and takes Eve's BP while she is still half-asleep. It reads 107/87. He shows us a chart that shows us a normal BP for her age and size should be 85-90 for the top number and 45-55 for the bottom. He is afraid that her BP must be much higher at home when she is excited or agitated, so he tells us to put her back on the lisinopril. Eve's kidneys will need to be monitored because some blood pressure medications can adversely affect kidney function. Eve will be the 4th child with bilateral Wilms that he has followed, so he knows what he's doing.

We are back in the parking lot and run into one of the fellows at Duke who always responds to our phone calls (75% of which were previously poop-related). He is pleased to see Eve doing so well.

We get on the road and head back for home. I smoothly fall asleep with my sunglasses on so Matt is none the wiser.

We arrive home to a freshly cleaned, quiet house. Our neighbors came over and cleaned while we were gone! Natalie and Daniel were napping! Can you imagine our excitement?? We put Eve down for a nap and sit down, trying to figure out what the heck we did all day.

2 down, 4 to go.

We had some sweet neighbors bring us a delicious meatloaf and some homemade mac and cheese for dinner. Then we were off again for Natalie and Daniel's preschool pirates-and-princesses carnival. Nat put on her tiara and fairy wings and Daniel put on his pirate vest, cowboy hat and boots. ("I'm a cowboy-pirate, Mommy. I ride on a horse that is riding on a boat!")

My mom stayed with Eve while we took Nat and Dan to the carnival. Natalie was moving kind of slow and looked depressed, but I think that was a side-effect of the H1N1 shot. She got a low-grade fever, which is sad, but boy did she sleep well!

Yes...the H1N1 shot. Eve got this in the hospital. Even though it is offered in the nasal mist, the doctors asked that we get Natalie and Daniel the shot, since the virus isn't live. (They were concerned that there was a very small possibility that the mist could carry the virus to someone who is immuno-compromised.) Our pediatrician called to say the shots had just arrived on Thursday, so to make sure we got in at our earliest convenience as they were first come, first served. I highly recommend Dr. Robert Munt of White Oak Peds. (When Daniel was a very colicky baby, Dr. Munt used to call me up once a week just to check in and see how I was doing.)

I took Nat and Dan out on Thursday afternoon to get their shots right after Dr. Munt called. What timing! The kids had just watched an episode of Sid the Science Kid where Sid and his classmates get their flu shots. Unfortunately, Nat only remembered the part where one kid was scared and then said it hurt. She forgot the parts about it only hurting for an instant and the greater goal of keeping you and your community safe. I wish I could write something here about how the kids surprised me with how well they took their shots. I got an earful on the ride home about how horrible it was and how they are never doing that again and how their legs were going to fall off because it hurt so bad. I guess am going to wait a couple of weeks before I tell them that they have to get that second H1N1 shot...

Right before the phone call that the shots were in (please forgive the Memento-style writing of this post), I was at the ENT with Dan. While his tonsils are fine, his adenoids are enlarged. This is the reason he can't breathe through his nose very well. The doctor said some kids grow out of these things, but there's absolutely no way to tell which kids or how long. He gave me a prescription for Nasonex and told me in 2 weeks to video tape him for an hour when he's in deep sleep. A whole hour of Dan snoring on video!!! Look out girlfriends-to-come, we're starting the blackmail early!!!

If the Nasonex doesn't shrink down the adenoids, then we will have to get them removed. No biggie.

Fortunately for us, Daniel really enjoys putting things up his nose, so this Nasonex is easy-peasy. The most bizarre side effect? It could stunt his growth. This one is right up there with a prescription the same doctor had written me which had a side effect of "inappropriate happiness."

Wednesday, November 4, 2009

Wow, I just started a blog.

Blogging sure seems easy when you are just cutting and pasting. This is my 8th post tonight!

Today was the last day we had to force the antibiotics down Eve's throat (until next Monday). The first two days were upsetting to Natalie and Daniel...seeing your little [screaming, hysterical] sister pinned down by three really big people for little to no apparent reason can make you feel all kinds of crazy things. Yesterday, Daniel broke down while Eve was sobbing. When I asked why he was crying, he said, "I don't know!"

This morning was a different story. As soon as we laid Eve out to so lovingly administer her medicine, Nat and Dan pulled out their kid-sized lawn chairs and watched. It was sweet and deranged, all at the same time.

Once my mom dropped off Search and Destroy [Nat and Dan] at preschool, we took advantage of the beautiful weather and took Eve on a walk. I think it was good for her to get some fresh air. She seems to be doing well, even though her blood counts are supposed to be very low a week to ten days after the trifecta of chemo drugs are given. Her blood counts should start to go back up about a week after they bottom out. We have Eve sleeping in our room right now because Natalie loves to get all up in your business, and let's face it, preschoolers are walking petri dishes.

We got the good word from the good doc that we can bench the lisinopril until we go to the clinic on Friday. It is nice to not have to squirt anything else into that poor child for the next few days, although Nat and Dan will be disappointed to have to find a new form of entertainment.

While I am making a real effort trying to make sure the kids are polished and presentable, I feel as though I, myself, must not be making a good enough effort in the hair and makeup department lately. This morning, Natalie told me I looked "busted." I took it as my cue to get in the shower.

Natalie was so in love with Eve's new haircut, that I took her to get her own short 'do after preschool today. My friend Robin brought her daughter, Avana, to get the girls hair cut at the same time. The girls certainly looked cute and not at all busted. We went out for ice cream afterward and the girls got cotton candy flavor (which is not at all good in it's original form when you are over the age of 10, so I passed on that sliver of culinary brilliance). It was the first time I had done anything with Natalie in about two weeks, so it was a treat for both of us. It was entertaining to watch the girls play Duck, Duck, Goose with two people!

I had some quality one-on-one time last Friday night when I took Dan to urgent care. I don't think my kids have ever gotten sick during normal business hours. When Daniel got up from his nap late Friday afternoon, the lymph nodes in his neck were popping out. Thanks to the Scared Straight program at Duke Oncology, we learned that we have to quarantine any suspects and pump them full of antibiotics ASAP. So, off we rushed to urgent care! (For the record, this was my third visit to an urgent care facility in the past year. The first was when I hurt a tendon in my thumb in that freak break-dancing accident, and the second was when Nat got a pearl lodged in her ear.) Don't let the name fool you. No one walks with urgency at urgent care. It's more of a saunter.

When I explained our situation at home, you know, the whole not-wanting-to-get-Eve-sick-because-she-just-started-chemo thing, the doctor knowingly nodded his head and said he understood. He understood that I must be terrified of hearing the "C" word after seeing how large Dan's lymph nodes were. Seriously?? Is that the first thing that pops into your head when your patient has swollen lymph nodes? I hope strep throat makes it into that doctor's top ten list somewhere.

After 10 minutes of his best Seinfeld low-talker impersonation, the doctor finally swabbed his throat and ran a strep test, which was negative. Dan gets a prescription for 10 days of amoxicillin...for something. Come on, where's the creativity in that? I could have written that script in my sleep.

Oh well, at least we don't have to pin him down to take it.

Tomorrow I am taking Daniel to an ENT to literally figure out what is going on in that head of his. I have only seen the little guy breath out of his nose once in his life, and that was at urgent care when they took his temperature orally. He is also a big snorer, which I think is incredibly cute, but apparently can be an indicator of a serious problem. Maybe we can have his tonsils out this year and meet our catastrophic limit. Something to aspire to!

I know I keep saying how blessed we are to be surrounded by such wonderful people, but it's so true. We have had friends bring us food, cleaning supplies, and money for hospital parking and gas. People are bringing Nat and Dan over for playtime with their families. Even seemingly little things, like an email to check up on us, make a huge difference in our lives right now.

Natalie and Daniel came home from preschool today with gift cards to grocery stores and restaurants from families we have never even met. A photographer friend of ours is hosting a fundraiser for our family. Two of our close friends came over tonight with coffee, donuts, and a check from friends and neighbors to help out with Eve's medical expenses. This has been such a humbling experience, and we have no idea how to even start to adequately thank people for all that they have done. We can only hope to pay it forward and be of service to those in need when the time comes!

Monday, November 2, 2009

One of the side effects of Vincristine is constipation. This has been drilled into our heads by everyone at Duke. Do NOT let the child get constipated. There is a special place in purgatory reserved for those of us who allow this to happen.

Well...we went two full days allowing this to happen. Not that we weren't trying to push the medication and high-fiber foods, but Eve wasn't having any of it. Saturday morning, she decided she wasn't going to take any medicine. I tried sneaking it into juice. Chocolate milk. Pudding. Applesauce. No way, no how was she eating any of this. Perhaps she was suspicious of all the new treats we were plying her with? We tried holding her down and pouring it into her mouth...she would just gurgle with it like it was Listerine and spit it back out in our faces. (Which was NOT fresh like Listerine.)

Fortunately, we found something called MiraLax which is supposedly tasteless and clear, that dissolves into any beverage of your choice. I'm not sure why we did not purchase this days ago, as this is truly the only way we could outsmart a two-year-old. We also decided to feed Eve copious amounts of sugar-free candy, which contains sorbitol (the laxative of diabetics).

The only part of the plan we didn't think all the way through was that Eve would be so full of stuff, that she would throw it all up on Saturday night. Twice. Thank goodness we were caught up on laundry (on account of the grandmas!) and had extra sets of sheets. (Natalie slept through both episodes of vomitting and the santizing that followed.)

Sunday finally rolled around and the three adults in the house literally did a happy dance (and Matt uttered a "Praise Jesus!") when Eve did what she needed to do. The rest of Sunday was pleasant since she felt a lot better, and she even scarfed down a large plate of salad (ruffage!!!) at dinner.

This morning we took Eve to the pediatrician to have her blood pressure checked. It was 96/58, much, much lower than the readings she was getting in the hospital. The oncologists wanted us to get this checked today to make sure that she wouldn't be overmedicated with the Lisinopril (blood pressure medicine) if her BP was normal. This could be a sign that the chemotherapy has shrunk the tumor enough where it isn't putting as much pressure on the renal artery (which is causing the secondary hypertension).

The good nurses at the pediatrician's office also showed us the proper way to hold down a two-year-old and force medicine down her throat. This came in handy because she needs to take an antibiotic twice a day, three times a week, to prevent a certain kind of pneumonia. Eve can certainly scream loud enough to make you want to give up, but my mom, Matt, and I held her down and gave her the medicine. Can you believe it takes three of us to do this?

I took Eve to a friend's house where she was photographed in some of her birthday tutus. I wanted to make sure to get some pictures of her pig tails before her hair falls out. We were told to expect that 2-3 weeks after the start of chemotherapy, over the course of 2-3 days.

After the photo session, I took Eve to get her first haircut. She sat perfectly still as she got most of her hair cut off. (The support nurse at Duke recommended we get her hair cut short before the hair falls out, as it may be less traumatic for Eve and her siblings.) She's cute as a button- in fact she looks like a little pixie with her new hairdo!

I'm happy to report that she's snug as a bug in a rug right now. She's got quite a strong spirit! We go back to Duke for chemo and an appointment with nephrologists on Friday. We are beyond blessed with the outpouring of support we have received from our friends. Here's hoping for an uneventful week!