Wednesday, January 20, 2010

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 opeartors 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?


  1. What a long day for all of you. Eve is such a trooper. Can't wait to hear what the toomah board has to say about her case and surgery.

    Also glad to hear your washing machine is fixed. Finally! How many gift cards did you end up with?

  2. I couldn't help but roar with laughter about the garlic on the pizza, only because I made the exact same mistake in the Duke Cafeteria (err Atrium). Except I never did find those packets of parmesian cheese. Now I know.

    Aren't the folks in the Radiology recovery area the greatest. Rebecca has had multiple MRI scans and those nurses are fabulous.

    Best of luck with results of the Tumor Board.
    And have fun spending those Gift cards. Well earned if I do say so.

  3. Here is a link to more information about the genetics of Wilms tumor, Aniridia, Genitourinary Anomalies, and Mental Retardation Syndrome that was prepared by our genetic counselor and which has links to some useful resource for those dealing with this condition: There is also a number listed for anyone who wants to speak to a genetic counselor by phone. I hope it helps. Thanks, AccessDNA

  4. Thanks, shashank. I actually know someone who might have a child with WAGR. How did you come across this blog?