Sunday, November 29, 2009

Friday, November 27, 2009

Black Friday Special: Vincristine, Half-Off!

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

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

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

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

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

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

5 down, 1 to go!

Monday, November 23, 2009

Don't fly to Mexico for apricot pits.

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

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

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

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

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

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

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

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

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

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

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

Saturday, November 21, 2009


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

(Don't be that guy.)

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

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

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

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

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

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

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

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

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

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

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

4 down, 2 to go!

Wednesday, November 18, 2009

The squirts.

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

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

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

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

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

Ahhh...hand sanitizer.

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

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

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

Sunday, November 15, 2009

Uncle Murray

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

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

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

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

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

Friday, November 13, 2009

Paco the cat

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

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

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

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

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

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

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

3 down, 3 to go.

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

Thursday, November 12, 2009

Sickos Anonymous

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

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

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

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

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

Tuesday, November 10, 2009


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

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

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

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

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

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

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

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

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

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

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

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

Monday, November 9, 2009

Lawn chairs and hiney coughs.

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

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

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

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

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

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

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

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

Sunday, November 8, 2009

The C Word

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

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

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

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

Saturday, November 7, 2009

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

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

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

Checked-in at the clinic.

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

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

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

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

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

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

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

Checked back in with the front desk at the clinic.

We are whisked away to start chemo.

Our chemo nurse is called away for an emergency.

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

Nurse gives Eve chemo.

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

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

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

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

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

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

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

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

2 down, 4 to go.

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

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

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

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

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

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

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

Wednesday, November 4, 2009

Wow, I just started a blog.

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

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

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

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

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

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

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

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

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

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

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

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

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

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

Monday, November 2, 2009

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

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

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

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

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

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

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

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

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

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

Thursday, October 29, 2009, part 2

I'm happy to have nothing to report today. Eve appeared to make it through last night and today without any nausea! She will go to her pediatrician on Monday to have her blood pressure checked and then to the Duke clinic next Friday for chemotherapy and an appointment with the nephrologists.

It is good for Eve to be home. I think Natalie and Daniel help distract her from any discomfort she might have. In fact, she's so wound up that I can't get to bed because she keeps talking to me! Tomorrow night it's back to her room. I hope you all have a great weekend!

Thursday, October 29, 2009

I can't believe just five days ago I had never even heard the word "Wilms" and now I am on my way to an honorary doctorate in the subject.

I misspoke yesterday when I said Eve had an EKG...she had an echocardiogram. This morning she got an EKG, which proved her heart is working very well.

Dermatologists came in to check on a curious rash that turned out to be something called lichen striatus. It should go away on its own in a year or so. There goes my theory about this strange, linear rash being related to anything that is going on right now. (I guess not everything HAS to be related to cancer.)

Matt and I both had our blood drawn so the genetics team can compare our blood to Eve's (see first update). There was a miscommunication about my birth year and Matt got some funny looks from his phlebotomist as she thought I was born in 1991. I guess cradle robbers freak out people in the pediatric wing.

We spoke with a clinical social worker who put into words some of the feelings we have been having. It's hard to hear, but helpful at the same time. I am not a cryer, but this week has been emotionally exhausting. I don't think I have felt this drained before.

The nurse from supportive care came up to educate us about all the nitty-gritty stuff. We talked about medicines. We talked about fevers. We talked about who to call at 3 a.m. There was a ton of information. She sent Matt to the pharmacy to pick up the seven prescriptions we will need here at home. The bag he came back with looked like it contained a Bojangles tailgate special inside. There are three anti-nausea medications, one baby laxative, one blood pressure medication, one antibiotic (to prevent pneumonia), and a numbing cream to put on her port before it is accessed for chemotherapy.

Eve got her first round of chemo this evening. She did great...stayed still for the most part. One of the medications (Doxorubicin) is red in color, so 30 minutes after the chemo, her diaper was red. Thankfully, we were told to expect this, or else I would have frantically been hitting the nurse call button. We are supposed to wear gloves when we change her from now on since the drugs are secreted in the urine.

The last order of business at the hospital was her H1N1 vaccine. This poor child has been covered head to toe in band aids, but she takes them like a champ!

The nurse removed the needle from the port and we set off for home, only to find I-40 went from 4 lanes to 1. After a seemingly long journey back, Eve ran inside and put on Natalie's ballet tutu and danced around the house. We finally put her down a little while ago in our room and hope that she can make it through the night without too much nausea.

1 down, 5 to go.

Matt and I have been overwhelmed with the support we have been receiving. With flu season underway, this is a particularly hard time to be immuno-compromised. We will miss visiting with people but know that it is in Eve's best interest to be extra-vigilant and keep her healthy while she goes through this treatment.

Thank you for keeping our family in your thoughts. We are so happy to be back home tonight and can't wait to wake up in the morning to be surrounded by all of our children! (It would be nice if they slept in a bit, though.)

Tuesday, October 27, 2009

Today was another eventful day for Eve. She got an EKG to get a baseline of her heart, so we can compare what the Doxorubicin might do to it down the road. She was very cooperative. Her heart looks good, although there is a small hole in the right ventricle that allows blood to flow into the left. A cardiologist will come and speak with us tomorrow, although one of Eve's doctors said there is no need for concern because of the direction of the flow. (If the flow were reversed, there would be a murmur.) He said he isn't worried about it because it is not uncommon and we would never have known if she hadn't had the EKG.
Eve also had her surgery today to put in the port. I am truly shocked by how quickly kids recover. She was bouncing around the room shortly after she woke up! The port will remain accessed while we are in the hospital so Eve's blood can be taken for labs. She does not appear to be in any pain.
Eve was visited by opthamologists today who dilated her eyes and studied them per request of the genetics team. Her eyes are perfectly fine, although her pupils were so big that she looked like she jumped out of an anime cartoon.
We spoke with a nurse from Support Services who began to talk to us about all the expected side-effects of the drugs Eve will receive. We have quite a lot of reading to do in the book that she gave us, but I'm sure we will be experts in a few weeks. I certainly know a lot more than I did four days ago.
Lastly, we signed the consent forms for the chemotherapy. Eve will start tomorrow while her port is still accessed. Our plan is to get her into Friday's clinic. Tomorrow's chemo will be inpatient, but the remaining treatments will be outpatient at the clinic.
As it has been explained to us, she will arrive and have her blood taken to test her white and red blood cell and platelet counts. If they are high enough to continue, she will then be given the drugs, which are administered fairly quickly (two of them take 1 minute and the third will take 15). The biggest part of the visit will be waiting for the lab results, as the lab usually gets backed up. If we come during peak hours (10-10:30 am) we can expect to be at the clinic until 3 or 4 pm. Our goal is to arrive early so we can get her labs back and start chemo as soon as possible.
Eve is apparently well-known throughout the country's oncology community now, and her doctors here are fighting over who will get to treat her. She hasn't let this situation get her down and is still as sweet as ever.
We will be discharged either tomorrow or Thursday, depending on how chemotherapy goes tomorrow. Tonight is the last night the tumors have left to grow!

Monday, October 26, 2009, part 2

We spoke with the oncologists this evening and finally got some answers as to what course of action they recommend taking with Eve.

The MRI revealed some uncertainty as to what the spots on her kidneys really are. The doctors still believe that the right kidney has a large Wilms tumor in the upper portion, but the lesions in the lower part may be nephroblastomatoses that should, in theory, rapidly respond to chemotherapy. The left kidney may indeed have small Wilms tumors. We will not know for certain what these spots are until they are removed and sent to pathology.

The kidney is in a shell, which means the tumors are contained. The doctors do not want to take a biopsy because there is a chance of spilling contaminated cells into the abdomen, which would raise the stage of the cancer. They recommend we treat with an agressive therapy plan before removing the tumors.

This plan was developed by a Wilms expert in D.C. who runs a clinical trial in which the patient is given 3 (rather than the standard 2) drugs during therapy. Evidence suggests that the extra drug in combination with the standard two may help get rid of the tumor cells while saving the largest amount of normal kidney tissue. He weighed in on Eve's case and recommended we act as if the Wilms is bilateral, which is to treat aggresively. In the trial, 13 out of 14 children showed a favorable response to the treatment.

The treatment would consist of two consecutive 3-week cycles of chemotherapy. Eve will receive Vincristine (weeks 1-6), Dactinomycin (weeks 1 & 4), and Doxorubicin (weeks 1 & 4). There are certainly side effects, some very serious, but the doctors feel that the risks are worth taking. One of the more serious side effects is damage to both the heart and liver. These will be monitored throughout therapy.

After the chemotherapy is complete, Eve will have an MRI to evaluate any changes. If the chemotherapy has the desired effect, she will go on to have surgery to remove the affected parts of the kidneys. After the surgery, the tumors will be sent to pathology to determine what exactly they are, and then the next form of therapy (chemotherapy and/or radiation) will be decided upon then.

As of tonight, the doctors are going to try to get her into the O.R. tomorrow to have the port put in. We hope to have her first treatment this Friday.

Thank you all again for your support and well wishes. We are extremely blessed to have so many wonderful people in our lives. Even though we haven't been able to respond to messages, we have read each one and your thoughtfulness is truly appreciated.

Monday, October 26, 2009

We had a change of 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.

Saturday, October 24, 2009

Some of you might have already heard we are in the hospital with Eve. This week at her two-year-old checkup, her pediatrician found a lump in her abdomen and sent us to get an ultrasound. We got the U/S yesterday morning and there appeared to be tumors on her kidneys. We were sent to the Duke Pediatric Oncology unit yesterday afternoon and today Eve got a CT scan which confirmed she has a Wilms tumor on her right kidney, as well as some questionable cells in her left.

As of now, the plan is to remove the right kidney on Monday, as most of the kidney has turned into tumor. We will most likely just monitor her left kidney with regular CT scans, as there does not appear to be a tumor there, but we will need to wait for the head Radiologist to look at her scan in the morning to make sure. She will also be getting a port put in her chest when she is under anesthesia on Monday so when she starts chemotherapy, they won't need to put in an IV each time.

Her blood pressure is very high, so she is on lisinoprol to bring it down. Apparently this is related to the tumor on her kidney and should be resolved once it is removed.

Right now, she is comfortable since she can finally eat. Eve is pretty tired and a little cranky from all the poking and prodding and starving (she went for a day and a half with no food or drink), and lack of sleep (she didn't get a nap yesterday and stayed up until 3 am!...didn't sleep in, either). She isn't attached to an IV pole right now since she is eating and drinking, so that is also making things more comfortable for her.

I just wanted to fill everyone in on what is going on with us. We are grateful for all of the support our friends have given us and ask that you keep Eve in your prayers. I will update more when we have more information. I refuse to google any of the terms we have heard. I prefer to get all of the information from our wonderful doctors!