How do you eat an elephant? One bite at a time. 11-16-17

Accessing the port for the first time.

First day of chemo round one:

We had to be at the hospital at 9:00. Left at same time as the rest of the house left for school. Checked in, weight, height, etc., and then we accessed the port the first time after surgery Monday. It was sore, but she said much easier than the IV. Everyone has been more than informative--patiently explaining all of the procedures. It's been incredibly helpful.

Ready to roll for first chemo. Fashion forward as always. 

Then we went onto the PFT--Pulmonary Function Test. This was to get a baseline measurement of her lung function. This is because some of the medications can cause lung damage, so they need a starting measurement. They put her into this tube that looked like something out of the movie Alien. She participated in a bunch of breathing exercises that all bordered on bizarre. Once we were cleared from those tests, we waited about an hour or so for a room to be made available in the hospital.

Pulmonary function test.

Family room has a freezer full of ice pops. 

Once we were admitted, things went very rapidly. There is a HUGE support team here at Children's, so that means lots of people in your space helping organize all sorts of services. We toured the floor, found the family room (with coffee, fridge, snacks, etc.), met social workers, nurses, shift nurses, new doctors, old doctors, child life specialists, etc. It's overwhelming. Best discovery so far? The family room has an entire deep freeze dedicated to the Freeze Pop. Elise and I both hummed the hallelujah chorus when we opened it. These are her all-time favorite snack item. It was like a little wink and nod from the Man.  She had two before she could get into the bed good.


Medications are delivered one after another over about a five-hour period. They spread them out to monitor allergic reactions, etc.  We add more medications over the next two days and repeat some. We'll also have some training about shots she has to take at home and her medicine regimen once we get to the house. 

People keep ask how we are feeling. Hopeful and tired. Hopeful and tired.

Hooked up and ready for meds. 

That's a lot of business.

Sleepy girl.