Banana Guac

August 1st marked the first day of first grade for Natalie. She smiled for a pic before running away from me toward the school bus.

Not even a goodbye. What am I...chopped liver?

Actually, I like liver. What am I...sauteed leeks?

Upstairs Eve

12:30 am: I set the alarm for 6:00.

6:00 am: The alarm sounds. I hit snooze, knowing perfectly well I will hit snooze again.

6:09 am: The alarm sounds. I hit snooze.

Eve gets deported.

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

7:45 a.m.

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

If a picture is worth a thousand words...

...then this post is worth about 21,000.

You've seen the Before I got the chemo-cut pictures. You've seen the Last 24 hours of having two kidneys pictures. You've seen the I'm a super-badass with one kidney! pictures.

It's 5:00 somewhere.

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

Catfishing

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

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

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

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

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

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

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



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

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

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

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

Codeine naps are the best!

Don't get cancer on a Friday.

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


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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Nope. Not having it.

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

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

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

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

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

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

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

MRI, NPO, OMG.

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

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

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

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

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

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

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

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

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

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


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

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

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

Bruce Willis wins by a hair.

Who rocks the Kojak best of all?

32% of you said Charlie Brown.

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

I wonder who Ashton voted for?

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

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

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

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

They use frickin' laser beams!

Aside from the 30 minutes it took to get Eve's IV tube free of air bubbles, this morning was more of the easy-peasy variety.

Find Eve's tiny feet in the right side of this picture. It kind of looks like using a machine gun to kill a mosquito, no?

Target acquired.

3 down, 3 to go.

Chez Duke

Welcome to Radiation-Oncology.

Please take a seat in the waiting area. You will be the only person under 60 here. This will earn you bonus cheek pinching points.

There are only two things you can prevent: forest fires and germy hands. Help yourself to some complimentary hand sanitizer.

Please look natural as we take your photograph for our upcoming brochure.

Enjoy your stay.

A relaxing spa awaits.

Do be in awe of this bad boy. He's about to radiate your guts.

And take care not to get your terry cloth robe caught in the lead door. Do not be alarmed that this door will not block out sounds of screams...of pleasure.

Please contact housekeeping for turn-down service.

2 down, 4 to go.

Radiation, take two

NPO this morning didn't make me want to fork myself in the eye, so I guess that was nice.

The beauty of radiation-oncology is that they run on time. We were in and out in two hours. The hairy mole on its beautiful face is the actual radiation.

Eve's port was accessed for labs, and then she was hooked up to some fluids in the event that her blood pressure dropped again under anesthesia. She was initially sedated with Propofol before being gassed. And for the record, I can totally understand how easy it would be to kill someone with that drug seeing how quickly it put Eve to sleep. Not that I'm trying to suggest that Conrad Murray murdered Michael Jackson, because I'm not one to make suggestions. I'm just saying he's guilty, that's all.

No issues with the gas mask today, so no need for IV sedation. (Hallelujah!) Eve came out of the panic room with nothing to show but a few extra sharpie marks.

1 down, 5 to go.

All of the Downstairs Eve, none of the action.

Today was supposed to be the day that we start turning Eve into SuperGirl via radiation. She ate herself silly the night before in preparation for a morning of NPO- a piece of bread, a grilled cheese sandwich, two bananas, an orange, some yogurt, chips, and two cups of milk. Seriously, I think her stomach has expanded into the vacant property where that right kidney foreclosed.

So how was radiation, you ask?
It wasn't.

Downstairs Eve was sedated with a gas mask, which worked perfectly on Monday for the mapping session. Matt and I sat in the waiting area nearby the radiation room while they got started. Less than five minutes later, we heard some screams coming through the three-foot thick door. Initially I was amazed by how quickly they radiated her. Then, as we tried in vain to calm Eve down, the anesthesiologist told us she called off the procedure. Eve's blood pressure and heart rate had fallen too low under sedation. Luckily, Eve isn't taking lisinopril right now or else it would have been much worse. I probably would have been blogging from the hospital.

We will have to wait until Monday to try again since the radiation-oncologist wants there to be at least two consecutive days of treatment in the beginning. Monday, they will access her port in case they need to do IV sedation (if the gas is a bust again). The docs will be able to give Eve some fluids through the port in case her blood pressure drops. With the radiation-oncology clinic being so far from the main hospital, it's extremely important to have everything in order before they try to sedate her. Because you always want to wake up from sedation.

She will need six treatments total. So, that's six days of NPO. Six Downstairs Eves.

0 down, 6 to go.

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!

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 operators 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?

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.

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?

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.

Monday, October 26, 2009

We had a change of plans...no surgery today. Since there are lesions on Eve's left kidney which are considered to be pre-disposed to cancer, the oncologists want to be sure that they have explored all options before removing the right kidney. There is most likely a large Wilms tumor in the upper part of her right kidney, but the lower part is questionable as to what it is, whether it be Wilms or nephroblastomatosis (not yet cancerous lesions that may or may not turn into Wilms).

Eve was sedated and given an MRI a few hours ago. The oncologists here at Duke have been assessing her case with oncologists all over the country, and everyone is weighing in before they proceed with anything. From what we understand, there are two basic options that they are debating- either remove the kidney and then give chemotherapy, or start with chemotherapy to try to shrink any questionable lesions, hoping to salvage part of the right kidney instead of removing the whole thing. If the left kidney were clear of lesions, they would simply go forward with removing the right kidney, but knowing that one day she might have to have part of the left removed, everyone wants to be sure they can't save any of the right.

A geneticist came in a few minutes ago to check out Eve and see if there were any obvious signs of some syndromes that some people with Wilms have. While she didn't see anything in her examination, Matt, Eve, and I will be getting genetic testing done on Thursday to find out if there is something abnormal with her genetic make-up. It takes several weeks before getting results, so we won't find out anything before then. Of course, this very well could be just an isolated case of Wilms unrelated to any syndrome, but they want to be sure. One of the doctors theorized that the cells in Eve's kidneys were abnormal in utero.

Again, we appreciate all your support and will update more when we find out the results of the MRI.