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."


  1. You are great at blogging! Glad Eve did well with her first two treatments! Praying for you all!

  2. I agree with Jenni... you are great at blogging. Thanks for keeping us posted.... what a day you had yesterday ! Let us know if you need anything this week.

  3. Awesome blog.

    And I just can't help but giggle as I read through your day at Duke, simply because its all so familiar for me. Especially going from one clinic to another. I've learned to make them write all of her vitals down if I have multiple appointments.

    Soo happy to hear Eve is doing well.
    I know we get to stop by the 4th floor on Monday for a follow up with Rebecca's doctor, so I look forward to getting to see all of those fabulous nurses again and saying hello. You really are in good hands with those ladies.

  4. Ok I have to laugh...inappropriate happieness? Can I please have that too?

    I am praying for your family! If there is ever anything you need, please let me know!

    You are awesome at this blogging thing

  5. Great tip about the vitals! I am going to do that next time.

  6. Only you could take a day like that and try to find the humor in it. I was laughing as I read about your day.

    I think you have awesome neighbors, friends and family there to help support you. I know I am far away but if there is anything you need please let me know. Eve and your family are always in my prayers.

  7. This is awesome! Glad things are going so well- sounds great.

    And just as a side note, the fact that Dan wanted to ride the horse on a boat reminded me of that song "If I Had a Boat" by Lyle Lovett. I will forever think of Dan when I hear it!