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!