Sunday, February 28, 2010

Free Haircuts!

Ok, so the title might be a little misleading. (Kind of like that time I got excited over the "Free Cowboy Hats" sign in the ladies bathroom before realizing it was referring to a box of paper toilet seat covers.) But, shaving your head is fun. Otherwise, why would all these people be doing it?

This guy doesn't look too scared.

"I'll take the cut that the kid behind me got."

"A little more off the top, please."

Now John is on his way to rocking "The Eve." Move over, The Rachel. There's a new 'do in town.

$195,576.58 raised at the Hibernian for St. Baldrick's on Saturday. Many pints raised, too.

Friday, February 26, 2010

My life, the circus.

I'm finding it increasingly hard to be both Eve's mom and Natalie & Daniel's mom. It's a skill I'm still trying to acquire. Thank you, friends, who have taken in my sometimes-orphaned children.

I took a break from cancer today to take Nat and Dan to the circus with their preschool. Most awesome field trip EVER, by the way. After being warned don't try this at home about twenty times, Nat watched a man leap through a flaming hoop.

"Can I try that at home, Mommy?"

Yes, it was a fun morning. And I spent $23 on two sno-cones without the slightest twinge of guilt. Hey, the cups lit up!

Matt took Eve to get radiated while we watched assorted wildlife dance. I did feel a slight twinge of guilt about that. Next year, Eve will get to join us.

5 down, 1 to go.

Tomorrow, Rocco will be shaving his head for baby Gwyn.

Take a look at Gwynzilla and tell me you don't want to donate!

Looking forward to the two day nuke break.

Thursday, February 25, 2010

What are the odds?

There's nothing like coming home from
radiation and crawling into bed...

Or a box. Times are tough!

4 down, 2 to go.

I told you a while back that an old coworker of mine was part of Club Wilms a few months before Eve was initiated. Her daughter, Gwyn, was diagnosed in June 2009 after her first birthday. I'm happy to say that Gwyn is N.E.D. (no evidence of disease). But I'm also sad to say that she just can't get a break- her family recently found out that lil' Gwyn is allergic to peanuts. And it's hard, once you have cancer, to make anything seem as sucky as cancer. But think of all those peanut butter sandwiches!!! If Daniel were allergic to peanut butter, he'd lose ten pounds the first week. My heart goes out to you, Momma G. The most ironic thing is that if Gwyn were being treated at Duke, she'd have to go to the allergy clinic...which is in the same place as the hem-onc clinic. But I guess this time it wouldn't be so bad since she would be the one in the waiting room with hair.

And do you know how many kids are diagnosed with Wilms in the US each year? 400-500. That's not a lot. Strange enough when you think about my ties to Gwyn. Stranger yet when you realize that 16-20 of those kids will have it bilaterally. And stranger still that a child who goes to our preschool was just diagnosed with it. And, (can it get any stranger?) that child is my friend's next door neighbor. It's weird to say, I know what you're going through and actually mean it. I guess I'd always hoped it would be something more along the lines of dealing with the problems of being too fabulous.

(I solemnly swear to all the parents at Sunrise UMC Preschool that Wilms tumor is not contagious.)

Ok, yet another absolutely cool kid is shaving his head in Eve's honor for St. Baldrick's. I don't know too many high school kids who are up to the challenge, so make sure you visit Vinicius T.'s page and show him some love.

Wednesday, February 24, 2010

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.

Tuesday, February 23, 2010

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.

Monday, February 22, 2010

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.

Sunday, February 21, 2010

Club Caillou

It's pretty cool that people are going for the Curly-cut. No, not Curly Sue...I'm thinking more along the lines of The Three Stooges.

Check out John's page and consider supporting him as he shaves his head in Eve's honor!

And look at Eve's alter-ego, Caillou.

Hey, at least we are saving money on shampoo. There's always a silver lining, no?

Thursday, February 18, 2010

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.

Monday, February 15, 2010

The Wal-Mart of posts

It has everything, but perhaps coherency and flow.

When Natalie turned two, we bought her the Shabby Chic furniture collection from Target. Heavy on the shabby. I'm sure it would have held up better if she had not been using the vanity as a diving board or trying to nap in the top drawer of her dresser. Matt was able to repair the broken dresser drawer, although it now randomly opens by itself a la Paranormal Activity. The vanity would need some extra TLC. We inherited the vanity stool from a friend after Daniel got into some nail polish and painted all over it.

Give me some clamps, wood glue, and a staple gun and I will happily chic up the shab.

See? I can do something besides cancer. Maybe I can fix our washing machine, too.

We got a second chance at snow-play on Saturday since Eve and I missed it the first time when she was in the hospital. It was the best kind, too. Light, fluffy, and gone by dinnertime. Eve lasted the longest out of everyone.

And here is Mommy's favorite winter activity- eating snow. (Well, really, you could leave off the "snow" and it would still hold true.)

After bribing Eve back inside with promises of hot chocolate and marshmallows, we all managed to get warm pretty quick. And as Matt tried to dial a phone number with a 919 area code, we were reminded how badly we need to go shopping for some new phones. See, these phones have gotten so worn out that when I go to answer a call, I will usually hang up on the caller because the talk button gets stuck and essentially acts as if it was pushed twice. The same is true of the number 1 button. And if you lived in our house, you would know this preschool song by heart:

[To the tune of Three Blind Mice]
9-1-1, 9-1-1
Help's on the way, help's on the way
If I need help, I know what to do
I call the police and the firehouse, too
That's 9-1-1.

So...when you try to dial that 919 with a phone that wants to dial double ones, and then hang up because you realize what you've dialed, guess who shows up at your front door? Don't worry, Matt. Help's on the way. At least the kids got to see a real police officer and learn a valuable lesson- if you accidentally call 911, a very nice police officer will come to your door and chat about the weather for a minute, but she will not take your parents away in her patrol car since they already found the red knife.

Valentine's Day was upon us and Matt took the opportunity to teach the kids that you give chocolate to show your love. I can only hope that the children don't get upset when I refuse to give them anymore chocolate. It's BECAUSE I love you that I won't give you anymore, kids. (Not that I'm saving it for myself or anything.)

After trying to convince the kids it was bedtime much earlier than usual, Matt and I enjoyed a quiet dinner. It was mostly quiet because we are married and don't have very much to talk about, which makes it easier to concentrate on eating. And eat, we did!

The first course included a wedge of blue-brie, some fig preserves, and homemade chicken liver pate'. I love pate' because it's French and it's rich and it's got enough fat to make Paula Deen quiver.

For the headliner, I cooked some country-style ribs in merlot until the meat was just about falling off the bone, removed the meat, and added some balsamic vinegar, honey, and thyme before reducing the liquid to a thick syrup. Slap up the meat with some of that sticky goodness, broil, and ta-da! You'll forget your child has radiation mapping in the morning. That was topped with an apple-shallot compote (with some added bacon just to finish sticking it to all the pigs around the world), and we ate it with blue cheese grits and garlicky spinach. And it's ok to eat garlic on Valentine's Day, as long as you eat it together.

I didn't give Matt any chocolate to show my love, but I did make a slap-your-mammy cheesecake with lemon-blueberry sauce. I gave myself a little extra insulin to cover that goodness.

So after we ate ourselves silly, it was time for bed. Just as soon as we fell asleep, it was time to wake up again for Eve's 7:45 appointment at radiation-oncology. Eve was both hungry and thirsty, but luckily we were able to hold her down long enough for the gas mask to take effect. She didn't fall asleep as peacefully as she did before surgery, but I imagine she might have seen the mask and remembered the last night she danced with him, she woke up with tubes coming out of places there shouldn't be tubes coming out of. (And I know I just ended that in a preposition. Put away your red pens.)

Eve woke up in a crabby mood, which was expected. Between Eve crying and the doctor and nurse both talking to me at the exact same time, I felt like I was at home with the kids. Her blood pressure was pretty high, which I know was the result of those high-decible screams and the fact that we took her off of her blood pressure medicine. I'm never quite sure why people try to take her BP when she is p-i-s-s-e-d. It ain't going to be low, that's for sure.

Part of the mapping session included making a special mold that fits Eve's body so she will be immobilized in the same way for each radiation session. The doctor told us Eve would be warm for a little while after the session because the material is heated up to get soft so it is pliable. Eve did not have any interest in wearing shoes, socks, a sweater, or coat. So, as we left, I had this upset child in her short-sleeved pajamas wrapped up in my coat as we booked it through the cold parking deck, her bare feet hanging out. I'm quite surprised no one thought we kidnapped her from a hospital room.

Eve is now the proud owner of these fantastic Sharpie marks that we must take care not to scrub off. It's kind of creepy, like crosshairs of the radiation gun. But it goes well with the port and the scar. It screams, Don't mess with me.

Part of being NPO is overcompensating when you are allowed to eat. My two-year-old daughter ate two bowls of Cheerios, a half-bowl of oatmeal, and the better part of two bananas before turning her nose up at a PB&J. What did she want instead?

That's pate', folks. She wanted pate'.

(With a side of chocolate ice cream-cake.)

Friday, February 12, 2010

I love your hairdo, Uncle Fester.

A friend of ours will be shaving his head for St. Baldrick's in Eve's honor.

Check out Eve's page here. (You can see before and after pics at the bottom of the page.)

And then go peep at Matt Tunney's page.

It's late and we have an early day tomorrow. Happy Anna Howard Shaw Day, everyone!

Thursday, February 11, 2010

Planning your life in three-week increments.

The break from chemo was nice. Very nice. The only thing that would have made the 3-week chemo-cation any better would have been not being in the hospital recovering from a nephrectomy. But, I'm still thankful for the small breaks we get.

Today began the first of five more chemo treatments for Eve, each three weeks apart:
  1. February 11, Vincristine & Dactinomycin
  2. March 5, Vincristine & Doxorubicin
  3. March 26, Vincristine & Dactinomycin
  4. April 16, Vincristine & Doxorubicin
  5. May 7, Vincristine & Dactinomycin

So she gets chemo, has a week until her blood counts drop, spends a week with low counts, then they slowly get back up until BAM! Let's do it again.

1 down, 4 to go.

In between having Eve's blood drawn and getting chemo, we hauled hiney over to radiation-oncology at the ominous Clinics. The doctor broke everything down for us. Some interesting highlights:

  • When you radiate the vertebrae, the growth will be markedly slower than the unradiated vertebrae. So, the radiation specialists make a point to radiate across the entire vertebrae rather than just hitting one side. This will prevent orthopaedic issues that occur when one side is growing and the other is not. Better to stop growth evenly and be short-torsoed (is that even a word?) than to have scoliosis because you didn't get your spine evenly radiated.
  • The muscles that support the spine will probably not grow as well after radiation. You can't evenly radiate that like you can the vertebrae, though. This has been linked to some orthopaedic problems. That's just something that will have to suck a lil' bit.
  • The bottom of the liver will be in the radiation field. There should be plenty of liver that isn't affected, though. But hey, at least that's an organ that can regenerate if some scatter radiation does more damage than predicted!
  • The intestines will be hit. Radiation, like major abdominal surgery, leaves some scar tissue which can lead to bowel obstruction. It could happen tomorrow. It could happen thirty years from now. We will have to be careful not to dismiss any stomach discomfort as a garden-variety GI bug.
  • The reproductive machine is still low in her pelvis, so it will not be in the radiation field. Which means Eve can grow up, find herself an Adam, and be fruitful and mulitply with no issues from this whole Wilms soap opera.

We have a mapping session Monday morning at 7:45. The mapping session is a simulation which will help the docs plan how to turn Eve into a Glo-Worm. It is our understanding that the folks down in radiation-oncology are punctual people, so I can only pray this is true since we will all be NPO. (Eve will need anesthesia to ensure she is completely still.) Radiation therapy will begin next Thursday, and will last for 6-7 consecutive business days.

That's a lot of Downstairs Eves.

Wednesday, February 10, 2010

What drives you to drink?

Which marathon would drive you to drink first?

6% of you said Dungle Book (Jungle Book).
4% of you said Doe Wipe (Snow White).
89% of you said Dowa the Expluhwa (Dora the Explorer).

But you know what is really going to drive me to drink? This on-again, off-again relationship with radiation-oncology.

So, it's like this:

Left kidney is A-okay.

Right kidney is resected. Almost all of the tumorous areas were necrotic (favorable histology). However, there was one small spot that had viable cancer cells in it. Since it is a small area and not all over the place, this is called focal anaplasia (unfavorable histology). Favorable histology, smaller cells, easier to treat and cure. You can probably guess what unfavorable means.

Technically, with Eve having bilateral Wilms tumor, she is considered Stage V. But, they do stage each kidney individually and both of Eve's were Stage I, meaning the tumors were only in the kidneys and were completely encapsulated.

This all sounds fine and/or dandy. There are pathology reports to read and protocols to follow. But we all know Eve is complicated, no?

Apparently no other kid has been treated like Eve before. I guess that's something she can brag about at sick kids' camp.

According to Dr. WilmsExpert up in D.C., the focal anaplasia adds an "interesting wrinkle" to the case. Nobody wants to be a wrinkle, no matter how interesting it might be.

Normal Stage I treatment is surgery and a two-drug chemo. Eve has already been on a three-drug protocol, which is usually used for higher staged cases. There is no data on kids who have been on a three-drug treatment with Stage I Wilms.

There is a study which shows kids who have been through the Stage I treatment are more likely to have a recurrence than children with more advanced staging who are treated more aggressively (i.e. radiation).

Are you still with me? It's ok. I'm not even sure I'm still with me. everyone's going to pretend that Eve has unilateral Wilms since her left kidney is so hunky-dory. Just focusing on the right kidney, this anaplastic histology screams, "RADIATE ME!" And that's what we're going to do. I know, I know. You have questions. What exactly are they going to radiate? I thought they removed that kidney?? Good question! They are going to radiate the tumor bed, or where the tumor was. Just in case one itty-bitty cancer cell mysteriously found a way out of the totally encapsulated kidney that was removed. Because, with Eve, it totally could happen and you know it.

There's also no data on kids with Stage I who have been given a three-drug treatment AND who have been radiated.

Protocol? We don't need no stinkin' protocol.

Tuesday, February 9, 2010

An Open Letter to Sears

Dear Sears,

I know you follow my blog, so here goes...I promise I have gotten your messages. All of them. We have received all the parts to our washing machine in the mail. I am not ignoring you. I simply cannot make an appointment until I hear from Eve's doctors. I appreciate you calling daily, even three times a day, to follow up on my issue. I promise to call you as soon as I know when I will be here to let your repairman into our home. Pinky swear. Until then, I remain,

Checking my voicemail,
Christy Griffith.

So here's the thing, the final pathology report came back on Friday. My understanding was that the oncologists would look at the report and then look at Eve's protocol to see what that tells us to do. Kind of like a choose-your-own-adventure book. Viable cancer in remaining kidney? Go down route B. Necrotic samples from lymph nodes? Follow path C.

I jokingly asked one of the doctors on Friday if they would be able to make a decision after consulting the pathology report and protocol or if they would need to carbon copy every pediatric oncologist in the US in a game of cross-country email tag. Haha, no, no, of course not. This should be pretty straightforward.

Monday evening rolls around. The phone rings. Guess what? Nervous laughter on the other end. "It seems as though we did need to do some emailing."

The left kidney tumor samples looked great. Everything was necrotic. Apparently, the right kidney (which was removed) responded great to chemo, but there was still a little bit of viable Wilms in it. Which apparently makes things like decision-making hairy.

So where are we right now? I have no clue. The goal, according the the protocol, was to start therapy within two weeks of surgery. The two-week mark is Thursday. I'm starting to wonder about this protocol. It must be as complicated as Eve.

It's been three weeks since Eve last had chemo. It feels like an eternity. Kind of like how I can't believe Natalie is only four years old. It feels like she's been around for at least ten.

Until I know which days and how often Eve will have chemo, I'm floating in a scheduling-limbo.

I'm trying, Sears. I'm really trying.

Friday, February 5, 2010

It's complicated.

There are a few phrases no one wants to hear when you talk to a doctor about your child's case. Among these are "very unusual," "extremely abnormal," and my least favorite, "it's complicated." Every doctor we have met has stressed how complicated Eve's case is.

For once, things might look a little less complicated.

The radiation-oncologist called this evening to share the news that Eve will NOT need radiation. [Insert lots of emoticons and exclamation points here.] The final pathology report is in, and it looks as though the resected right kidney still had a little bit of Wilms, but responded great to chemo. The questionable parts of the left kidney that were biopsied showed necrosis, meaning that tissue was dead. Chemo wins! I guess we'll never know if the left kidney actually had Wilms or nephroblastomatoses, but who really cares at this point, as long as those guys stay on Beetlejuice's side of the universe.

Now we need to wait for the hematology-oncology team to get the pathology report and see what kind of chemo treatment Eve will get next, which will start sometime this week coming up. Tentative excitement brewing in our house, although I'm always afraid to get too excited since it's complicated.

Thursday, February 4, 2010

Dopey -hearts- Doe Wipe

What do you give a sweet little Dopey who has just had a major organ removed?

A sweet Doe Wipe cake, of course. (The design is from Cake Nouveau, but it was made here by me and two dwarfs while Dopey was catching up on some "booty sweep.")

Eve has a lot of extra room for food now that the Wilmy kidney is gone. And she's keeping up with Nat and Dan, if not outpacing them. I guess that extra kidney was just weighing her down.

Monday, February 1, 2010

And the number one reason why we are happy to be home...


If you can't leave the hospital until you eat well, then please send something up that doesn't look like this. Thanks.