Sunday, January 31, 2010

It's just me and this computer, in the dark.

I have been amazed by how little sleep Eve has been functioning on the past few days, but I suppose she's not spending a ton of energy just lying there watching Dungle Book. She finally let me put pajamas on her last night. (Until that point, she was hanging Mowgli-style.)

The last IV came out today; this will make thumb sucking much easier. [Note to self: invent protein-rich thumb-flavored Dum Dums.] We also were able to disconnect the fluids so Eve and I could go on a walk around the floor. She did great- no signs of forgetting how to use her legs. It was the first time she's been out of her bed since we've been here.

Eve found a red wagon she wanted to ride in, so I must have burned like 18 calories pulling her around in that. I might go search for some chocolate now that I've gotten my exercise in.

The pain is getting a lot better, and it's okay if we don't give her pain meds every four hours on the dot. It's quite amazing how quickly kids recover. If I were her, I'd totally be milking it. I can't keep anything down but Taco Bell. I need some sleep- everyone leave the room and turn off the lights, because I'm not getting off this couch. And don't forget to give me the remote before you go.

Natalie and Daniel came to visit today with my parents. They brought cookies and cards and were just pretty darn adorable. I was happy to see Dan give Eve a hug and a kiss. He normally runs away and hides when she tries to get some love, like Swamp Thing is coming after him or something. He did ask if Eve has cancer, and when I said yes, he told me he wanted cancer, too. [Note to self: forget about Dum Dums and pay more attention to Daniel.]

So Eve fell asleep this evening around 7:20. It is the earliest she has been to bed yet. I am pleased, yet a little lonely. It's just me and this computer, in the dark.

I am happy to see one of my favorite nurses is back for tonight's shift. He understands what Eve is going through, being a cancer survivor himself. He also had abdominal surgery, so when I was demanding more drugs for Eve, he was definitely on our side, even when the surgical team just wanted to keep shoving Tylenol up Eve's butt. Seriously, I take a Tylenol when I have a mild headache; break out the good stuff for my daughter when she comes out of the operating room after having a major organ removed.

We will most likely be breaking out of here tomorrow. I am beyond excited, despite the lack of exclamation points in this post. The first thing I am going to do is search for some snow that isn't yellow and take a big bite.

Saturday, January 30, 2010

Dungle Book.

I can't imagine wanting to see The Jungle Book one more time, but then again, I'm not the one who just had her abdomen cut open. Obviously, it's not me who's calling the shots.

Last night could have been worse. But then again, it really could have been much better. Eve woke up every 20-30 minutes until the sun came up. By that point she was so exhausted, she decided to try sleeping. We woke her up to give her some codeine and she quickly returned to a drug-induced power nap.

And what do you know? Upstairs Eve awoke 90 minutes later!

Never underestimate the power of proper pain management. The key is to stay ON TOP of it, rather than trying to play catch up. And apparently I'm the only one who seems to know this. Fine, I'll just have to be that mom.

Her waking demands were in the following order:
  1. Waisins
  2. Dungle Book
  3. Ice Cweam.


The raisins were easy enough because I always keep them in my purse. (I carry a pretty small purse, but you'd be surprised by all the stuff I can fit in it. Raisins and Dum Dums are just as important as my AmEx nowadays.)

Dungle Book was also easy because it had never been turned off and was playing in a continuous loop.

Ice cream just required a push of the nurse-call button. We should all eat ice cream in bed for breakfast, no?



Big improvements today. Keep the codeine coming, baby.

Friday, January 29, 2010

Bring the pain, but don't forget to bring the drugs.

Matt got about 5 minutes of sleep last night before he was called into the PICU from the waiting room. "Mr. Griffith...Eve is asking for her daddy."

So, like Jack Bauer who laughs in the face of eating, sleeping, and peeing, he and Eve had their own Dora the Explorer marathon. All. Night. Long.

Thankfully she was moved from the PICU to the floor this morning on account of her extreme awesomeness.  And don't you forget it.

Eve received fentanyl every hour for pain, but it makes her randomly jerk, which causes a lot of pain in the abdomen. We finally got her switched over to morphine, but it still doesn't last as long as we would like it to. Tylenol up the booty doesn't seem to do a whole lot, so we're going to try some Tylenol with codeine and see if that won't knock out the pain and perhaps let her rest. She hasn't really been asleep for any length of time since she had surgery.

The arterial IV line is gone. The other IV is in place so Eve can get her drugs. Drugs are important. Today is supposed to be her most painful day.

The NG tube came out this morning. On an unrelated note, grocery stores report a sharp decline in pesto sales. Eve's catheter is also gone. Lots and lots of nice, light yellow pee...like lemonade! Hmm....what other foods or drinks can I ruin for you?

And with the removal of the pulse-ox monitor that was taped to her toe, the only thing left tethered to Eve is her saline drip going in through the port. That only needs to stay in until she decides to start drinking something. Anything! The child is not a fan of the clear liquid diet. She seemed mildly interested in popsicles.

Do you want a popsicle?
Yes, want popsicle.
What color popsicle do you want?
Pink.
[Nurse brings pink popsicle. Eve takes two licks, a small bite, and puts it down.]
Are you all done?
No. I want popsicle.
Here's your popsicle.
No. I want new popsicle.
What color popsicle do you want?
Orange.
[Nurse brings orange popsicle. Eve takes one lick and puts it down on top of the pink popsicle.]
Are you all done?
No. I want new popsicle.
Here is an orange popsicle and here is a pink popsicle.
No. I want purple.
[Nurse brings purple popsicle. Eve seems to prefer this flavor and works on it for about 2 minutes before putting it down on top of the orange popsicle.]
All done!

3 minutes later...

Do you want to take a nap?
I want blue popsicle!

Good thing she's still on fluids.

I had a good idea to open up a new bag of Dum-Dums to try to get her thirsty. I mean, I thought it was a good idea. She always seems to want water after eating the things, but today was apparently an exception. Popsicles...take two! But this time with your Dum understudies. Action!

Right now we are on our 6th straight viewing of "Dungle Book." Mowgli has temporarily replaced Doe Wipe on Eve's top two list. I have finally learned to appreciate Disney's FastPlay "feature" which makes it loops over again and again. Although I still can't channel my inner 12-year-old and appreciate the Jonas Brothers video after the movie. Or the twenty previews and special features. But, these are the things I do for my kid. Otherwise, I'd have to get up and figure out how to work the DVD player.

Thursday, January 28, 2010

General Hospital

As much as I will love and embrace Eve's new belly, I just had to get some pictures of it before it was changed forever. Armed with a bag of conversation hearts and a lot of patience, Jo's PhotoMojo got a lot of great pics yesterday. Go on, take a look at the slideshow here.

We will get some post-op belly pics in a few weeks. Maybe one with a broken beer bottle and a caption that says, "You should have seen the other kid!"

At 8:45 last night, Eve's oncologist called to say they had a game plan. Apparently, emails have been bouncing back and forth across the country, all with Eve's name in the subject line. Do they take out the entire kidney to remove any possibility of leaving cancer behind, or do they try to spare as much of the kidney as possible to preserve as much kidney function as they can?

(Maybe too much information doesn't help you as much as you think?)

The plan was to do renal sparing surgery. I thought this was the plan last week, but apparently plans changed several times in between our meeting with the surgeon last Friday and my conversation with the doctor last night. Anyhoo, early to bed. 4 a.m. wake-up call!

So...
Do surgeons take breaks if they are operating on the same patient for hours on end?
12% of you said yes. They pass the knife off to another surgeon like a relay with Chariots of Fire playing in the background.
8% of you said yes, but they don't share the knife. They leave the patient open on the table and let nurses shove donut holes in their mouths when they feel their blood sugar dropping. (Nobody likes Dr. McShakyHands.)
59% of you said no. No breaks for you.

That's right. No breaks for you. Which was fine, because Eve's surgery didn't take too terribly long.

We arrived at 6 a.m. I carried Eve back to the operating room around 7:30 and she immediately forgot she was in the hospital because she was so hypnotized by the four large screens playing Cinderella. The anesthesiologist placed a strawberry-scented mask on Eve's face, and it couldn't have been choreographed better. The fairy godmother appeared and sang "Bibbidi Bobbidi Boo" just as Eve slowly layed back, eyelids drooping, until she hit the table with a big grin on her face.

We should all get to fall asleep like that.

(I wonder if they popped in a different dvd after Eve fell asleep? Like, Wilms Tumor Excision for Dummies or Scrubs.)

The surgery took about two hours, much faster than we had expected. Everything went well. The right kidney could not be saved as hoped, but the other was left relatively intact, with only a small section removed. The tumorous right kidney and the biopsies of the left kidney and lymph nodes will be FedEx'd to a pathologist in Chicago who has seen pretty much every case of Wilms Tumor in the past thirty years. So yeah, I guess she's kind of qualified to inspect Eve's innards under her microscope.

Eve is in the Pediatric Intensive Care Unit (PICU) right now to recover. Abdominal surgery is no joke; it is quite painful. Her pain meds have been increased to keep her comfortable and let her sleep. As of now, she has her port accessed, and has two IV lines, one of which is an arterial line to get a constant reading of her blood pressure. She also has a nasogastric (NG) tube which is taking all the gross stuff out of her stomach and draining it out through her nose. It resembles pesto. There are a handful of leads on her chest and back which make the image that much more dramatic. Lastly, she has a catheter and we have taken to watching her urine output. There's not a lot coming out, and what is coming out is cloudy, so she keeps getting more fluids to keep her from getting dehydrated. And yes, there was a 10-minute period today when I just stared at that pee-pee bag, willing it to be filled up.

(Oh! And there's this 6" section of bloody steri-strips in the middle of her stomach.)

We are allowed to stay in Eve's room 22 hours out of the day. We lucked out in that we got one of the few private rooms here in the PICU, which meant I could turn up Terminator 2 on the TV as loud as I wanted. (Turns out Eve does not give a damn either way what happens to John Connor. I'll let it slide this time since she's medicated.) We are NOT allowed to sleep in here, though. I guess if there were to be an emergency and the staff needed to get to Eve, they do not want to trip over me outstretched on a short, uncomfortable cot, drooling on the plastic pillow and snoring like an overweight lumberjack. So...as long as we are awake, we can stay in the room. Which has become increasingly harder as the day has worn on.

Matt decided to take tonight's shift, so I will be going home in a bit to get a few hours of rest in our own comfy bed. (Matt, I hope you're not reading this right now. And if you are, don't be jealous. This was your idea!) I'll come back early in the morning and Matt will take his turn going home to get some sleep. We are goofy enough when we are sleep-deprived, so it's best not to be deprived at the same time, lest you want one of us to document the days events by changing the lyrics to Dora the Explorer. (Because I'll do it. Evie, Evie, Evie, Ne-phrec-to-my! Eve is super-cool with just one kidney!)

Hopefully Eve will have a good night and we will be able to move her to a regular hospital room tomorrow. Not only would one of us have a place to sleep, but we know where they hide all the snacks!

Wednesday, January 27, 2010

X marks the spot.

Yesterday was our pre-op appointment. We met with someone from anesthesia and signed our lives away before meeting with a child-life specialist who told us too many details about the number of tubes that will be coming out of Eve when she wakes up in the ICU. We were given a phone number to call today after 4 p.m. to find out what time to be at the hospital tomorrow. (I just got off the phone with them and turns out we'll need to be there at 6 a.m., bright and early. Well, maybe not so bright.)

After Eve's labs were drawn, we headed off to find radiation-oncology. When I spoke with the doctor who set up our appointment, he asked if I knew where the clinics were. Well, sure! We have been to them at least once a week for the past three months! Good. Radiation-oncology is in the basement beneath the clinics. It will be easy to find because we are the only ones down there. Awesome, no problem.

Except when we went to the basement, it looked like a place a serial killer might tie up his victims before going to ritualistically sacrifice a goat. This was not the place.

Well, there are other elevators that go to different places. Let's try those.

Nooo. Nothing down here screams high-intensity radiation. Back upstairs to ask someone.

Matt found a woman at the volunteer desk who handed him a piece of paper with cryptic instructions like, "Go to the end of the wall" and "Go through an open doorway." Included with the piece of paper was a map of the hospital. Matt thought the map was curious in that he couldn't figure out how to read it. Nothing seemed to make sense. Not that we come from long lines of cartographers, but we are able to navigate our way through the State Fair, so a hospital map should not be an issue. But still, we wandered around like a bunch of 11-year-old pirates trying to figure out where the buried treasure is.

Ohhhh...this map is for Duke Hospital SOUTH! We were in the wrong hospital following the wrong directions.

For some reason, I decided to wear tennis shoes yesterday. And I'm so glad I did. Because we very well could have been walking from terminal to terminal at an airport. (Although Matt was quick to point out that airports are actually clearly labeled.) We blindly followed a walkway that connected the hospitals, hoping there would be some better signage once we got inside. 25 minutes later, we arrived at the Clinics (for big people).

We met with radiation-oncology, but I won't subject you to the details until we know if Eve will need to have it. It doesn't sound pretty.

So here we are, a little more than 12 hours before we go back to the hospital. Poor Eve doesn't know what's in store for her tomorrow. Who needs an extra kidney, anyway?

Monday, January 25, 2010

Eat up before we starve you again.

Eve must sense that she will have to be NPO any given day, without notice. She certainly has been packing it in this past week.

For example, one morning after our barely 26-pound child finished a bowl of oatmeal, she ate another entire bowl of oatmeal. Did I mention this is the kind of oatmeal with added fiber? Then onto the second course: two bowls of yogurt. Next up, two bananas and an apple. Finally, three cheese sticks. Oh, and let's wash it down with a tall glass of skim milk (because she's watching her figure). That should hold her over until lunch, right?

In fact, she ate so much the morning of our meeting with the surgeon, it looked as though her tumors had grown back and then some. I wouldn't be surprised if we find stretch marks on her stomach.

The surgeon talked to us about his plan of action. He thinks it is very unlikely he will be able to save any of the right kidney, and not just because there are so many tumors in it. The biggest challenge is trying to save the artery (that pumps blood into it) and the ureter (that sends urine out of it). Because if the entrance and exit are compromised, well, what's the point of even having a kidney in there? It would kind of be like Jack Bauer's daughter Kim, who adds next to nothing worthwhile to the plot line but always manages to get in someone's way.

So, he'll probably have to remove the entire right kidney. The doctor also said that if he hadn't seen Eve's MRI from October, he would never have known there were lesions on her left kidney. He really had to look hard to find them on the most recent scans. If he doesn't feel anything abnormal when he goes in there, he will probably not take anything off of the left one.

Surgery day is set for Thursday. Time TBD. (We won't find that out until Wednesday.) Tomorrow is another pre-op appointment where labs will be drawn and we will meet with the anesthesiologists. Eve's blood will be cross-matched so there will be some on-hand during surgery in the event it is needed. We will also find out how her hemoglobin is looking in case she needs to be transfused before Thursday.

After the pre-op appointment, we are to report to radiation-oncology to discuss possible radiation therapy after surgery. Of course, we won't know if Eve will need radiation until after the pathology report comes back, but in case she does need it, the doctors want to make sure we know all the details so she can start as soon as she resumes chemotherapy. Every parent's dream...gut your child and then radiate what's left of their insides while pumping poisonous chemicals into their bloodstream. Dream, nightmare, whatev. I get it; life's not fair. I used to understand it on a much more superficial level when I questioned why I have zits AND gray hair.

I can only imagine that the tumors shrinking have made more room for food. And with Eve being very close to shedding that extra kidney, imagine how much more room there will be! I mean, with two kidneys, she managed to eat two servings of yogurt, two servings of chicken and rice casserole, and a half a piece of cake before pushing the dessert away and yelling, "SALAD PLEASE!"

And that's just one of the reasons why Eve is that kid who makes your single friends want to go make babies.

Thursday, January 21, 2010

The verdict is in.

A brief phone call from Eve's doctor revealed that there has only been minimal change in the size of the toomahs. Thanks to the MRI, it appears that the surgeon will not be able to save the right kidney, after all. Let's get this surgery over with. It's time to poop or get off the pot.

Tomorrow morning we meet with the surgeon for Eve's pre-op appointment. It is quite interesting since we still do not know exactly when her surgery will be, but I'm sure we'll get an email at least the day before letting us know when they plan on taking out her kidney.

In addition to Eve being in the approximately 5% of kids with Wilms tumor who have it bilaterally, she is also unusual in the fact that she has lots of tumors, instead of just a larger one in each kidney. So now she will be left with one kidney, minus a couple of dents from where those SOBs are squatting. And all this makes me think we might have to relive this nightmare again one day in the future. But, I guess we can always flip a coin to figure out which kid gets to give Eve a kidney.

Wednesday, January 20, 2010

Tumor Board

When I predicted that we may be at Duke later than our appointment times would have suggested, I never dreamt we would be there that long.

Eve arrived a bit before 9 this morning to get her port accessed. She had appointments at 10:00 and noon for an MRI and CT.

Eve was buckled into the van at 5:44 p.m.

Maybe it was because no one thought about the fact that you have to drink oral contrast for the CT two hours before the scan. And if someone is supposed to be NPO, why would you sedate them when they have a stomach full of juice?

It turns out that piggy-backing the two scans isn't very common and no one thought it t-h-r-o-u-g-h before we got there.

I can't complain about the staff. Everyone there was more than pleasant. But to arrive in radiology at 10:00 ready to go, only to sit there until 11:20 when the light bulb goes off and someone orders some contrast...and then to have it arrive at 11:50...and have to wait an hour for it to leave Eve's stomach so she can be sedated for her MRI...well, let's just say I am happy to report that Downstairs Eve only made two brief appearances before the scans.

She was sedated around 1:00 (for her 10:00 MRI) and wheeled away. Apparently she woke up during the MRI and had to get another bolus of the anesthesia medicine. I can't imagine waking up in the middle of an MRI, not knowing I was supposed to be having an MRI, and not even knowing what an MRI is. If I were two-years-old, I would think my brother and sister put me in the dryer.

(And what is up with Eve waking up during sedation?? She's less than 26 pounds! They give her enough anesthesia to knock out a small horse. Eve not only wouldn't fall asleep last week during the DMSA renal scan, but when she had her first MRI in October, she woke up in the middle of that, too. Although she peed on the doctor before she was put back to sleep, so I guess she got her two cents in.)

Matt and I took the opportunity to have a lunch date since Eve was asleep and would never know we weren't being NPO behind her back. Duke has a nice cafeteria, or "Atrium" as they call it (just so no one thinks they're about to enter a K&W). For $20, you can get a Ninja Special sushi roll, some rice, two pieces of pepperoni pizza, and two drinks. And that's exactly what we got.

Sometimes when you're NPO, your eyes are a bit bigger than your stomach. Not the case with us today, though. I'm not embarrassed to admit it was all eaten with no residual indigestion, although my breath was pretty kickin' afterward. I *thought* I saw a shaker of parmesan next to the red pepper shaker. I *thought* it was coming out faster than I have ever seen cheese come out of a shaker. Then I saw a whole basket of individually wrapped parmesan cheese sprinkles. And that's when I realized I had poured a quarter of a cup of garlic powder onto my pizza.

Matt and my garlic breath took ourselves back to the recovery room but Eve was still in the MRI. We walked around the hospital looking for interesting places to sit (because we are too cool for waiting rooms) and eventually came back to the recovery room around 3. Eve was still in the MRI. We decided to call home only to find out that the Sears repairman had once again not shown up, despite my phone call this morning with an unnamed woman from Sears who assured me the man would be at my house at 1:00. Do you mean 1-5, or 1:00? "1:00, ma'am. He'll be there right after lunch."

We took this occasion to call 1-800-4-MY-HOME at the same time on our cell phones to see who could get some sort of resolution. I had already gotten sassy with the lady who called our house this morning and she said she could give me a gift card. Matt and I recounted the exact same story to two different opeartors but I appeared victorious when I was awarded with another gift card. During these heated phone calls, Eve was wheeled in front of us from the MRI to the CT. We must have looked like raging lunatics to the nursing staff as our cell phones were glued to our ears, both talking a little too passionately about a washing machine. Matt gets points for asking for a supervisor first (and I totally copied his idea), but it was my willingness to be kept on hold for 17 minutes that must have brought out the inner fire that I used to burn off that supervisor's eyebrows, all the way in India.

The repairman eventually showed up sometime after 4:00, and was lucky I was still waiting for Eve to come out of the CT scan.

Eve came back to recovery and woke up within a few minutes crying for me to hold her. As soon as I picked her up, she was asleep on my shoulder. And what would YOU do if you were there waiting for your kid to wake up?

You'd ask for scissors, of course.

Eve has had these same 20 strands of long hair on her head that just do not want to fall out. I know they look silly. Volumizing shampoo will not fix this look. It would be a great comb-over on a different kind of person, like someone who keeps their teeth in a glass cup at night. I have had a very hard time cutting it off because Eve still asks for bows in her hair. She has no idea her hair has thinned out. In fact, Daniel had not even noticed until I pointed it out to him on a picture. But the moment struck us as she lay still in my arms. It's now or never!

Matt patiently cut away the remaining blond strands as the nursing staff looked on in mixed horror and amusement. Are they crazy or brilliant? We have already decided to save Eve's least favorite activity (nail grooming) for next week when she's still asleep after surgery.

The anesthesia made Eve's blood pressure drop, so she needed to get some IV fluids to try to bring it back up. Downstairs Eve woke up when we pinned her down to get a pulse-ox reading, but that seemed to be just the thing she needed. Her blood pressure started to rise, probably as a result of the primal screams. And she decided to quench her thirst with some juice after said screams. Then Upstairs Eve reappeared and we were cleared to leave.

The scans were supposed to be reviewed this afternoon with Eve's doctors, but I'm doubting that happened since they were nonexistent at that point. (Unless they were able to get that Delorean up to 88 miles per hour.) Tonight, Eve will be discussed at Tumor Board, which to me conjures up an image of the Brain Trust from Scrubs.

Tumor Board sounds like such an ominous body. Tumor Board is made up of lots of docs who discuss difficult cases and treatment options. Tumor Board is familiar with Eve's case. Eve is what you would call a "Tumor Board Celebutante." Tumor Board is going to decide what kind of heroic surgery might be done to possibly spare some of Eve's right kidney. Tumor Board might be drinking coffee and enjoying some light snacks. Does Tumor Board discuss anything that's not a toomah?

Tuesday, January 19, 2010

I have a dream.

We were shocked to hear the news this morning.

Eve's DMSA renal scan showed that her right kidney is putting up a hell of a fight. While most (or if we're being honest, EVERYONE) thought that the right kidney would have next to no function, it seems that it is carrying 44% of the workload, while the left has 56%. Not too shabby.

The rest of the report reads as follows:
"There is mildly heterogeneous distribution of radiotracer in the bilateral kidneys. There are no major focal photopenic areas noted in the left kidney. The right kidney demonstrates a prominient photopenic defect from the mid aspect of the kidney to the superior pole. An exophytic appearing curvilinear band of tracer activity is noted medially adjacent to the photopenic defect in the superior pole, likely representing some renal parenchyma at the periphery of the known Wilms tumor. In addition, there is a somewhat prominent photopenic defect also noted within the lateral aspect of the interpolar region of the right kidney."

Yeah, I had to look a lot of those words up, too. I *think* this means that the grey stuff we saw in the scan was nonfunctioning, tumorous kidney cells, in the top half of the right kidney. But I'm no radiologist. Just an overtired parent who is trying hard not to unleash her fury on the Sears repairman, should he choose to show up.

It is now 9:27 p.m. We called Sears on Sunday the 10th to schedule an appointment for our leaky washing machine and the first one they had available was today, sometime between 1 and 5 p.m. So, perhaps naively, I waited here from 1 to 5. At 5:15, I called Sears back to ask where my repairman was. I'm sorry you are going through this, Ms. Griffith. Incorrect. You are not sorry and we both know it. It's not our fault; the customer ahead of you had a problem that is taking a lot longer than expected. It is absolutely your fault. Stop giving me this crap. It's [un]common courtesy to give someone a phone call if you can't make your FOUR HOUR WINDOW. He should arrive a litle bit after 6. So you're telling me I stayed inside on this beautiful afternoon waiting for you guys to not show up and now I need to cancel my plans this evening to wait some more? I'm sorry for this inconvenience, ma'am. Stop saying you're sorry! Sorry doesn't do anything. This inconvenience better be reflected in our bill. Umm...I will have the repairman call you.

I know when someone is just trying to get me off the phone.

7:45 rolls around. I asked Matt to call Sears back and see what's going on. We are still on the list to get our machine serviced, but have not heard from the repairman. Matt asks Sears to cancel the appointment and reschedule for tomorrow morning. I am a bit disappointed I won't be here to give my lecture on respecting people's time, but I will be sure to give my mother-in-law instructions to use her cable-television voice. And if anyone has heard my mother-in-law threaten the poor soul on the other end of the Time Warner line if they dare to transfer her one more time or try to sell her any more crap she doesn't want, then you would be shaking in your Uggs just a bit, too.

The man on the line with Sears again apologizes for Matt's circumstances. He says the repairman will call tonight about the appointment for tomorrow. I am not dumb enough to be waiting for this call. Instead, I am channeling all my negative energy into figuring out what the word photopenic means. I am under the illusion that since the answer is not on the first page of Google when I type in "What is photopenic defect?", it must be something of a secret password that is reserved only for radiologists or perhaps freemasons, and now I really need to know. (No dice at the time of posting, though.)

I had the bright idea this morning to take Daniel with us to chemo, because there was no school today. Eve couldn't go to the clinic yesterday since they were closed for MLK day. Because maybe he had a dream that kids with cancer just wanted a day off.

We arrived, and Daniel thought he was in the world's biggest playroom. He would have happily yanked toys from pale, bald kids left and right if there weren't two of us on duty to make sure he didn't get overzealous. It was quite a busy day, and we spent a good portion of the morning in the waiting room. This was clearly Dan's favorite spot. The exam rooms have no toys.

While Nat was very interested in Eve's port access and helped to push in some of the saline and heparin flushes when we brought her with us on Christmas Eve, Dan could care less.

Matt to Daniel: Daniel, look! The nurse is going to give Eve her medicine!
Daniel to Nurse: You're in my way. I can't see Max and Ruby.

Oh well. We tried.

12 down, 0 to go. The waiting game begins.

I think I might have set myself up for this. The first six weeks of chemo flew by. The second six weeks have dragged. I predicted as such the night in December we got the phone call that Eve would need more chemo before surgery. And I know all clocks in Duke will slow tomorrow morning because Eve will be...

Wait for it...


NPO.

We will get to the hem-onc clinic at 9:00 to have Eve's port accessed. Then we supposedly will have an MRI at 10:00 and a CT at noon. But my watch hasn't figured out Duke time yet, so we will see how long before Downstairs Eve re-emerges.

The Sears man better pray he doesn't run into me tomorrow.

Tuesday, January 12, 2010

Meet Downstairs Eve.

The three letters that make my heart race more than any other are as follows:

N

P

O.

Put them together and I throw up in my mouth just a little.

NPO (nil per os) is Latin for best of luck not sticking a fork in your eye today, sucka!

Yesterday we arrived at the clinic a bit before 8:00 in order for Eve to have her port accessed and get her blood work done. We headed downstairs to Nuclear Medicine so Eve could have an injection of radioactive material for her DMSA renal scan. The results of the scan will tell us how much of Eve's kidneys are actually functioning. So, the DMSA is the material that was injected into Eve, but apparently is so long that none of the doctors could tell me what the letters actually stand for.

We had an 8:30 appointment to get the injection, which would need time to work it's way through to the kidneys, so the scan was scheduled for 10:30. Which was just perfect when the injection wasn't given until 9:50. And by perfect, I mean I could have stuck a fork in someone else's eye.

Since the scan takes 30-40 minutes of the patient lying completely still, Eve would have to be sedated. And you mustn't eat or drink (NPO) before sedation, lest you want to puke up while you sleep and choke to death. So, Eve was slowly turning into Downstairs Eve while her scan got pushed back to 11:20 on account of the material needing 90 minutes to work it's way down to Wilmsville.

Upstairs Eve is far nicer than Downstairs Eve. Upstairs Eve is very cooperative and friendly. Downstairs Eve spews out pea soup while her head rotates 360 degrees. It's not her fault; it's just that Eve does very well when she's upstairs sucking on lollipops in the hem-onc clinic. And doesn't like to be starved and sedated downstairs in radiology.

Matt and I decided to be proactive and head back up to the clinic for chemo while we waited the 90 minutes. We had originally planned to take Eve to clinic last Friday for treatment, but just before we were packing up the van to leave, her doctor called and said something along the lines of, It's probably a better idea to wait until Monday to give Eve the Vincristine since she just had it a few days ago.

At least they didn't call while we were on the Durham Freeway. That would have been a whole other post.

Her ANC was 561. No toxicity issues with the previous dose of Vincristine. So, Eve got her chemo before the scan. (11 down, 1 to go!) In retrospect, this was one of the better decisions we as a married couple have made. Giving chemo to Downstairs Eve after the scan would have bordered on sadomasochism. Back down to Nuclear Medicine.

Downstairs Eve did a lot of crying and whimpering for food and/or drink, stickers, movies, shoes on/shoes off, her blanket (which we did not think to bring), and being held in a standing position ONLY. Eve is the single reason my arms have any definition. Yesterday was a very simliar experience to the CT scan I took her to five weeks ago, but this time Matt was with me, so I got to share the pain.

Eve got into the room for her scan and was given some kind of barbituate that seemed to work in about 60 seconds. Seemed being the key word here. Let's put her down on the table...oh wait! She's awake. Let's give her more anesthesia. Ok, she's asleep again...oh, snap! She's still awake. Let's give her some more. Wait, why is she screaming? Oh yes, because in all her thrasing about, the needle has come out of her port and the drugs are burning her under the skin.

So, Eve had her first port re-access, with no magic numbing cream, and was promptly given the max amount of anesthesia she was allowed. And as long as Mommy held her, she stayed still and feigned sleep. And as soon as Mommy tried to move her, she would wake up. Well, only one solution to this problem...

Mommy, lay on the scanner with Eve on your stomach while we take the pics. And don't move.



Dang, this table doesn't even have a place to rest my elbows. I can do this, though. It's only half an hour.

So, basically, this radioactive material has made it's way into Eve's kidneys and there is a special crystal lens that absorbs the radiation that the kidneys are giving off. I'm no doctor, but from my limited vantage point I could see that the left kidney was almost completely neon, and about half of the right seemed to be glowing, as well. Maybe this is indicative of kidney function...I mean, what else could it be? Is it unreasonable to assume that gray kidney = no function and bright green kidney = save me? So yeah, I'm thinking of taking up radiology when this whole oncology pursuit gets old.

Some of you may be disappointed to learn that despite my neon green shirt, I was not, in fact, radioactive.

Anyway, we made it through the whole scan with just a puddle of drool on my chest to show for it. Off to recovery!

It was already nap time and Eve did not care to wake up and eat or drink for the nurse. She woke up crabbier than before she went down, so the nurse suggested we let her go back to sleep in hopes she'd wake up later in a better mood. Well, once again, this was Eve's nap time. She would have slept on my chest in that recovery room until the next morning if we had let her. What we did let her do was sleep for another 20 minutes before asking if we could be discharged.

Downstairs Eve was not pleased waking up in the middle of being buckled into her carseat. She wasn't pleased when we left the parking lot. She still wasn't pleased when we were driving on the freeway. She especially wasn't pleased when we stopped and walked around with her, in a last-resort attempt to calm her down. No, no, no. There was no pleasing Downstairs Eve.

She fell asleep after a good 20 minutes of wailing and whipping around. Enough time for us to make a Taco Bell run before we got home, because honestly, when your child is NPO, you are also NPO. And you really deserve some nachos supreme.

Monday, January 11, 2010

Have no fear.

The knife is found.

Apparently we have too big of a knife collection, because it slipped in between the knife trays in the drawer.

I feel bad that I told Nat we might all get taken away by the police, but on the flip side, see the potential of such interrogation techniques in the future.

Sunday, January 10, 2010

Downtime.

There are some nights when Matt and I just look at each other and know we are due for one of my all-time favorite activities: eating on the couch.

Oh yeah, I'm talking about making some high-crumb snacks, killing the lights, turning on a non-animated movie, and going numb while we watch big people on our small tv. No Wiggles, no Snow White, and absolutely nothing PG. We can eat in the living room AND watch grown-up things AND stay up late. We can watch Jack Black fart all night long if we really want to! One of those nights where your brain is whimpering, Help! It's dark in here.

This is now a fairly good date night when you've crossed that line into adulthood. I knew I had first crossed it some years ago when I willingly went to bed earlier on a Saturday night than I had the five days preceding it. Because I was tired. And I was tired not from staying up too late the night before because we were all over downtown tripping the light fantastic, drinking martinis and eating tapas, you know, just being generally young and fabulous. I was tired from that big shopping trip I took to the Super-Walmart after dropping the kids off at school. So yeah, there was no going back.

On the night in question, I was ready to pop the popcorn. But, perhaps feeling a bit guilty about all the extra butter and salt I was most definitely going to drench that lite-popcorn in, I decided to eat a grapefruit first in hopes it might carry some good nutritional karma into my gut before the upcoming shock-and-awe campaign. But first...the knife!

Wait, where's the knife?

Ok, seriously. The sharpest serrated knife I own is easy to spot as it has a bright red handle among the black handled knives. Why am I not seeing the knife? Matt, do you see the knife?

Matt does not see the knife. This is a pressing issue. One cannot lose a very sharp knife in a house with children who are hell-bent on maiming Barbies in the name of playing doctor. And so, the interrogation begins.

It is now 10:15 on a Wednesday night, and any hope of relaxing on the couch while eating on autopilot is fading with each passing minute. We go into Nat's room and try to wake her up.

Natalie, did you see the red knife?
Yeah.
{snore}
Natalie, where is the red knife?
It's... {snore}
Natalie, where is the red knife??
It went poof. {snore}
Natalie, where is the red knife?!?
Daniel snatched it from me.
{snore}

Into Dan's room.
Daniel, have you seen the red knife?
{snore} Natalie did it. {snore}

I can now understand how children can convince themselves of experiencing something that never happened after we pressed Natalie some more. There was a good 30 minutes where we took her downstairs and questioned her about the location of the knife, and it became more obvious that she had no idea what the red knife even was or where it was hiding. But she didn't want to let on.

Where did you put it after you took it to your room?
Umm, I put it under my bed. But it's not there anymore; it went poof.
Where did it go poof to after it was under your bed?
Then it went into Daniel's room under his bed. But it's not there anymore; it went poof.
Where did it go poof to after it was under his bed?
Then it went downstairs onto the couch. But it's not there anymore; it went poof...

(You can probably guess that the knife walked all over the house before it "poofed" into another location. And these locations were all places we had previously asked her about.)

Channeling my best David Caruso, I dramatically lowered my figurative sunglasses and told Natalie the police were going to come and take us away unless we found that knife. She seemed mildly upset by this, but not nearly enough to tell me the location of the knife, if in fact she might have known where it was at all. So, once I added that she would be taken away to live in another house (horrible parenting skillz, I know! But it was almost midnight and my judgment was lackluster, at best), her face crumpled up into the most pathetic thing I've ever seen, even in a Hallmark movie. She admitted she had no idea where it was but begged us to find it before the police came.

We put Nat back in her bed, and after ransacking the house for two hours, decided to check the trashcan. It was the only place it could be. And there we were, both in our pajamas and chemo gloves, in the middle of the night, rifling through crap that had been marinating in the outside trashcan for a few days, in search of this damn knife. In the garage. When it was 19 degrees outside. And guess what? It was just as gross as you might guess. And no sign of the knife.

We called it quits and went to bed. So much for a relaxing night-in.

The first thing Nat did when she woke up was run to Dan's room and say, "We have to find the knife before the police take Mommy and Daddy away!"

And Daniel responded, "What knife?"

It's now been four nights since the knife went missing, and luckily no one has been hurt or taken away by the police. It's quite the unsolved mystery. Paging the ghost of Robert Stack...the knife is untouchable! (There's a two-fer for you.)

Well, at the insistence of my mother, we went out to a movie last night. Pro: we got to leave the house. Con: we had to wear real clothes instead of pajamas. But, Avatar in 3D was completely amazing and well worth the first hour of the movie I spent trying not to throw up. This was a movie of the future, while the Walk, Do Not Run warning before the film started was clearly from 1990. Maybe they keep that old thing around to make each movie seem extra modern in comparison, no matter how many times Jennifer Aniston remakes the same romantic comedy.

As the credits rolled, the gentleman next to me started to wax poetic about how unrealistic the military's tracking software (OF THE FUTURE) was. Because the other stuff about the 10-foot tall blue creatures who fly on mountain banshees was apparently spot-on.

Wednesday, January 6, 2010

Refresher Course

Now, you too can be on your way to becoming an oncologist! (Or, at least sound like one.) Impress people at the dentist's office, Jazzercise, and fondue parties with your new vocabulary!

Here's a handy reference guide for those of you who want to know what's going on, but don't want to go back and start from the beginning.



The Treatment Plan we received from Duke:

"Your child has been diagnosed with Wilms tumor. Wilms tumor is a type of cancer that occurs in the cells of the kidney. Your child's disease is considered higher risk because there are tumors in both kidneys (bilateral Wilms tumor).

"The most common way to treat bilateral Wilms tumor is to give two common anti-cancer drugs (chemotherapy with Vincristine and Dactinomycin) to shrink the tumors and then to do surgery to remove the tumor tissue. In some cases, an entire kidney and part of the other kidney are removed. Sometimes radiation therapy (treatment with high energy X-rays) is also done.

"There is some recent evidence that giving one extra drug (total of 3 drugs) may help get rid of the tumor cells while saving the largest amount of normal kidney tissue. This would not be considered 'standard' therapy."


The drugs:
  1. Vincristine Likely side effects include hair loss, reversible neuropathy, and constipation.
  2. Dactinomycin Likely side effects include nausea, vomiting, hair loss, and a drop in white blood cells, red blood cells, and platelets.
  3. Doxorubicin Likely side effects include nausea, vomiting, hair loss, a drop in white blood cells, red blood cells, and platelets, and damage to the heart muscle.
(I will spare you the "less likely" and "rare but serious" side effects. Trust me on this one.)


The port:

Eve's port is a long, soft tube (central venous catheter) that was inserted into a large vein that leads into the heart. It is completely implanted under the skin. It is used to take blood, give drugs and IV fluids, and transfuse blood. We put Emla cream over the bump in Eve's chest where the port is to numb the skin before the port is accessed. The port is a blessing and a half, and then some.


Bone Marrow Suppression:

The bone marrow is where white blood cells, red blood cells, and platelets are made before they are released into the bloodstream. Chemotherapy works by blocking cell growth which includes both cancerous and normal cells. This causes low blood counts.
  1. White blood cells (WBC) fight infection.
  2. Red blood cells (RBC) carry oxygen to the body's tissue.
  3. Platelets (Plt.) prevent bleeding.
Eve must have an Absolute Neutrophil Count, or ANC, of 750 or greater to get Dactinomycin and Doxorubicin. The ANC is an estimate of her body's ability to fight infection. If it is under 500, she is considered neutropenic, which means she is at a higher risk for infection. The ANC is calculated using a sub-type of white blood cells called neutrophils, which are most important in fighting dangerous bacterial infections, and bands, which are immature neutrophils.

For anyone who likes to geek out to this type of thing, the equation is:
WBC x (%Neutrophils +%Bands) = ANC
Although Matt likes stuff like this, I am happy the doctors at Duke always do the math for me on chemo days. On the days I have to take Eve into her pediatrician's office for those in-between chemo blood checks, I call Matt on my way home and rattle off some numbers and let him compute to his heart's content. He and Texas Instruments go waaaaay back...


Our home pharmacy:
  1. Septra, twice daily, three days a week, to prevent pneumocystis pneumonia.
  2. Miralax, daily, to prevent constipation.
  3. Lisinopril, daily, to regulate blood pressure.
  4. Zofran, thrice daily, for 48 hours following Doxorubicin and Dactinomycin administration to prevent nausea.
  5. Reglan, to prevent nausea if Zofran doesn't work.
  6. Benadryl, to be given 30 minutes before Reglan.
  7. Emla, to numb port site 30 minutes before access.
  8. Flintstones Vitamins, because it can't hurt, right?

Scans and tests:
  1. Complete Blood Count (CBC) gives us the number of WBC, RBC, and Plt. This test is done before chemo and a few days after chemo.
  2. Differential indicates the percentage of each sub-type of WBC. This is done with the CBC.
  3. Ultrasound (U/S) uses sound waves to detect changes or abnormalities. Eve has had two of these; the first time showed the presence of tumors and the second time showed how much they were shrinking from the chemotherapy.
  4. X-ray is electromagnetic radiation. Eve had an x-ray done after her port surgery to make sure it was placed correctly.
  5. CT Scan is an x-ray test with a special machine that rotates around the patient, giving cross-section pictures of the body. For Eve, this provides better imaging of the kidneys and tumors than an MRI. She is sedated for these scans so she will be still.
  6. Magnetic Resonance Imaging (MRI) uses magnetic waves to see inside the body. For Eve, this gives better images of the blood vessels inside of the kidneys which is important for the surgeon. She is sedated for these scans so she will be still.
  7. Echocardiogram (Echo) is an ultrasound of the heart. Eve has had two echos- once before the start of chemo and another at week 7 to make sure her heart is okay from the Doxorubicin.
  8. Electrocardiogram (EKG) studies electric signals of the heart. Eve has had one EKG prior to the start of chemo.
(Did you make it this far?)


After the surgery:

We wait for the pathology report to come back from the tumors. The doctors need to see how the tumors responded to chemotherapy in order to decide what the therapy post-surgery will be. There will definitely be more chemo and perhaps some radiation.




I hope you got all that. There will be a test in the morning, folks.

Monday, January 4, 2010

Why, Santy Claus, Why?

Why are you taking our Christmas tree, why? Oh, Cindy Lou Who, it's because I'm done with Christmas. It's because I love reclaiming my house from that very cluttery holiday. My qi was having a hard time moving around the place with so many pre-lit decorations jutting out from every corner. (And yes, it's also because I'm still a tiny bit bitter about those lights.)

It's a brand-new year; it's a brand-new Christy. Waking up a bit later than usual on New Year's Day (like, three hours later) with just as much fog in my head as there was in the air, I resolved to go green in 2010. So I skipped the shower and headed for the Motrin.

The only resolution I've ever kept in the past has been to make our bed every day. Our room could resemble the aftermath of a nuclear explosion, but as long as the bed is made, there is some order left in the universe. I can, at least, have some control over something. And here I am making you believe that I have done this everyday in recent memory, when in fact this morning I was more preoccupied with getting ready for clinic than doing the one-armed bed making dance. (Go ahead, try hospital corners with a small child on your hip!)

Today I just KNEW that Eve's ANC would be too low to get chemo. I mean, I had this feeling in my gut we'd have to spend another two hours in there waiting for someone to come back and tell us she didn't make counts.

We've talked about my instincts before, no?

Her ANC was 1218. All systems go. Doxorubicin, Dactinomycin, Vincristine...bring it!

10 down, 2 to go.

We're so close, I can almost taste it. But of course, you have to wear gloves and a mask and you're really not supposed to taste that stuff. It's poison, after all.

Back to clinic on Friday for more Vincristine, provided Eve doesn't show any more toxicity from the dose she just had today. I did have an appointment with my endocrinologist this Friday, but that can be rescheduled. Wilms trumps diabetes this week.

Me: Hi, I have an appointment for Friday that I need to reschedule.
Them: Sure. The next available appointment I have is for next Friday.
Me: Hmm...that's not going to work. [Chemo day]
Them: The next available appointment after that is Wednesday the 20th.
Me: I can't make that date, either. [MRI and CT scans]
Them: I can fit you in on Monday the 25th.
Me: I think I might have something else going on. [Nephrectomy, anyone?]

I guess I'll call back next month and try again. My phone only holds a charge for so long, you know.

And while needing to reschedule my appointment was good news, because it means that we are tentatively back on schedule with chemo, I still had a pressing matter on my mind- Natalie.

She thinks she gave Eve cancer.

No, sweet girl, you cannot give someone tumors. Why do you think that?
Well, I threw up one night a long time ago and then I gave Eve a kiss.
No, baby. That did not give Eve tumors.
Then who did she get them from?

Oh, boy. I don't even know where to start. How do I explain that cold and flu-sick is different than cancer-sick? Is sick even the right word?

Natalie has caught onto things very quickly. "Eve's medicines that she takes can make her food taste funny to her sometimes, Mommy. That's why she doesn't want to eat that right now. I can eat it, though!" Or, "Eve has a port where she gets chemotherapy to shrink the tumors in her belly." And, "When Eve's numbers get back up to a thousand, she can sleep in my room again!"

Now, how to make her understand you can't catch cancer?