Epilogue

So, I've definitely not been the post-iest for a couple of years.  We continued to go to Duke every three months for scans.  Eve has had enough radiation to fuel a back-up generator at Shearon Harris.  I laugh when people are scared of getting cancer from going through a machine at the airport; you have a better chance of getting cancer from being treated for cancer.  We've been billed for CTs, MRIs, echos, x-rays, ultrasounds, some nuclear medicine scan that is so far removed from my brain that I couldn't pick it out of a line-up...

What's up?

Nothing much here. I've been watching a lot of Netflix.  Like, A LOT.  That's why I haven't been blogging.  It must be showing because someone in my tap class recently asked me if I was pregnant.  And it wasn't a man.  And it wasn't a joke.  And when I told her no, it was just a food baby, she didn't believe me and asked me AGAIN.  So I guess I need to either do jumping jacks while I watch Netflix or eat more fiber so I can deliver my food babies before tap class .  Once, a few years back, I ate a lot of Fiber One bars staying with some family not knowing the effect that more than one would have on my body and I can assure you that you do not want to eat more than one Fiber One bar per twenty-four hours unless you are well-stocked on toilet paper and want to read the same two issues of Consumer Reports in your aunt's bathroom.

flotsam and jetsam

Things have been happening here day and night, night and day.  Day and day and night and day, but mostly day because that's when stuff happens.  Except when you get up in the middle of the night because you really shouldn't have eaten that questionable taco that had been left out for an indeterminate amount of time.

I love you more than Taco Bell.

Life is busy, and I am lazy, so between those two is the reason I forgot to tell you that Eve had another check-up in January.  So, she had a check-up in January.

Check-ups are easy, it's just making sure no one wants to over-scan your kid that's the hard part.  Like, I'm all for being diligent, but when I say Just put it on our tab! all fun and fancy-free, I don't really mean that.  We are already in medical debt up to our eyeballs, and that's saying something because my eyeballs are even higher than most people because I'm really tall.  So, the hardest thing is convincing the ultrasound tech that no, I don't really think we need to have a chest x-ray since we're going to get a chest CT done in an hour.  It's already like an x-ray, but better.  I know this because I've seen the bills pictures.  I should be more scared of extra radiation, but isn't that like spitting in the ocean at this point?  Right now, I'm most scared of not having this paid off before the cyborg collection agents of the future thaw my cryogenically frozen body.

This amount of time it takes to load the pictures in this post is meant to encourage you to drink with me.

What do you get when you take a boy to the library and let him pick out a book to take home?

You get this:

Snickers, bacon, tacos...oh my!

We have had a busy few weeks around here.  When you don't hear from me, it's because we're too busy being normal? not having cancer definitely being normal definitely being kind of almost normal.  It is easy to blog often when you are sitting in a chair in a hospital in a waiting room.  It is not easy to blog often when you invite your kids to make a birthday cake out of candy.  Have you tried to clean up after inviting your kids to make a birthday cake out of candy?

While you were gone...

My husband went to China for two weeks.  I was going to post about what we had been up to while he was gone so he could experience it with my award-winning pictures and colorful vocabulary but then I remembered that the Chinese Internet Police probably wouldn't allow for the transmission of this blog to his laptop.

CT stands for cat

Some people move up scans because they think they feel a lump in their child's abdomen.  Some people move up scans because their kid just isn't acting right.  Some people move up scans because they can't bear the three-month wait.

Some people move up scans so they can hit their deductible so Daniel can go to speech therapy.

(Me.)

21 stickers, 3 beads, and a couple of faded scars.

Eighteen months off-treatment. It feels like she was just diagnosed yesterday and ten years ago all at the same time. Or maybe I feel this way because I generally have no sense of time and this is why I'm late to everything. BUT! I was not late for her appointment. No Duke Truant Officers on my back.

First off, ultrasound. (Ultra-sound? Ultra sound? Sonogram.) The tech does not rush out and come back in to take more pictures. Always a good sign. Eve receives three stickers.

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?

What's up, Doc?

Wednesday was another trip to the eye doctor for Dan. In an attempt to negotiate with the terrorists, I brought along a bag of jelly beans.

Candy goes a long way in the house, but will it work in public?

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.

The Heartburn, Pt. 2

I think I know what my problem is.

I do fine with CT scans; it's the ultrasounds that put me in a rocking chair staring blankly ahead.

The Heartburn

Lately, lots of things have been giving me heartburn.

(I will not change my eating habits, no siree. I will eat generic Tums all the live long day.)

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.

Scanxiety.

Where to begin since we last talked? Ok, I guess this time I'll go in chronological order.

Wednesday was Natalie and Daniel's last day of preschool. I brought cupcakes in for Daniel's birthday, so I couldn't get away with not bringing them into Nat's class, even though her birthday isn't until Memorial Day. She's great at the emotional-blackmailing.

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.

Ni hao, Eve!

Eve's latest obsession is Ni Hao, Kai-Lan! For those of you not in-the-know, Kai-lan is a Chinese Dora who cavorts with emotionally immature animals. She teaches kids practical words you can use on your next trip to China, like "hello" and "dinosaur." What would make this obsession suck slightly less would be to actually have cable television and not just a DVD with the same four episodes on it. But, in perspective, it's not cancer, which sucks infinitely more than most things besides Barney.


Ni hao, hem-onc! Did you miss us?

Eve was understandably much happier to be entering the children's center instead of the rad-onc side. The big fish tank at the entrance was apparently a sight for sore eyes. Eve found the fish of her dreams, gave him a big kiss and a hug through the thick glass, and then started conversing with him. "But why, fish? Why are you swimming in circles?" And the fish opened wide and began to mouth his answer. Unfortunately I could not hear it, but whatever he said seemed to satisfy Eve.

You gotta hand it to all those fish in the tank talking to themselves. They really seem to be having some deep conversations. After all, if you can't talk to yourself, who can you talk to?

Upstairs to get accessed. The port is really mean looking lately; the Emla turns the site fire engine-red and all kinds of scary bumps appear. Six days in a row of accessing it for radiation has not done the skin any favors. No time to get too worried about that, though. Two minutes to get downstairs for an echocardiogram!

Well, maybe there was some time since we got to sit in the waiting room for a good 25 minutes. The radiology reception area is right across from the gift shop, which is home to buckets full of loose candy. At the eye-level of a two-year-old.

Strangers will buy you candy if you are bald.

The waiting area is full of things that have the potential to be fun. Like, dollhouses and train tracks. The only way to reach said potential is to actually have trains or dolls and furniture for said toys. I do not like the qi of the waiting room lately. The empty dollhouse has given up hope. Please buy more toys for the bald kids, Duke.

Eve finds the echo quite relaxing. She lies back, arms behind her head, and doesn't move for the next ten minutes. In fact, slap a pair of bad sunglasses on her and it could have been Weekend at Bernie's 2. I can only assume that everything is a-okay with her heart since the tech did not rush out of the room to find a doctor. I am beginning to learn this is a good sign. Eve gets a Beanie Baby for her superior chillaxing skillz and we are sent on our way.

Back upstairs for chemo. Beanie Baby goes overboard, ending his short life. We are happy no one was under the kamikaze bear. His body lays on the first floor next to the empty dollhouse.

Counts look good. Chemo is ordered. We floor the docs with news of the new bilateral case. Docs still maintain Wilms is not contagious.

To pass the time while we wait for the pharmacy to make up the poison, Dr. Wechsler shows us pictures on the internet of tumors cut out of patients. I ask for him to find out if the pathologist took pictures of Eve's kidney. If I can get my hands on a picture, we will have very interesting Christmas cards this year, for sure.

And we go back to the port once the internet is exhausted from my morbid curiosity. The docs think it's just irritation from all the accessing and tell us to watch for pus. Pus Watch 2010 is on.

Eve falls asleep in my arms. The nurse cannot get a blood return. Oops! The needle has come out of her port. Thankfully Eve sleeps through this and is not screaming in pain. Those nasty bumps must have been hypnotizing since we all stared at them and did not notice the needle coming out of place.

Eve wakes up during her Zofran drip and we turn on Kai-Lan. Seriously, these animal friends of hers have deep-seated anger management issues. I can get past the sordid tiger if he helps Eve stay still for the drugs, though. You don't want your kid leading a Zumba class while she's hooked up to a few feet of IV tubing. Xie xie, Kai-lan.

2 down, 3 to go.