Tumor Board

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

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

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

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

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

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

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

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

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

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

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

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

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

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

You'd ask for scissors, of course.

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

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

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

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

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

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.

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.

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!