The Care and Feeding of a Cancer Patient

Each day we write Millie's checklist on a small whiteboard at her table place setting. The checklist helps to keep any surprises from upsetting her, and helps her stay in control of her care.


A typical day would state:

Zofran (antinausea medicine) [ ] [ ]

Blood Draw [ ]

Oral Care [ ] [ ] [ ]

Shot [ ]

Homework [ ]

Flush Lines [ ]

and I try to include some fun things like

Walk [ ]

Movie [ ]

We have a whole pharmacy on top of Brian's dresser. I bought a scrapbooking materials case to use for all the items that we access daily. Latex gloves, facemasks, broviac line care supplies, blood vials, alcohol prep pads, syringes, and countless bottles of medicines are somewhat neatly organized and serve as a constant reminder of our new life.

Here is a link to a parent teaching handbook on broviac care in case you are interested. Just to see all we've learned!

Millie has been off the appetite stimulant for over 2 weeks, so her appetite has "normalized". She eats enough for us not to worry, and even chose some spinach and carrots yesterday. She seems to currently subsist on Ritz crackers, cheddar cheese slices, and apples- but each day brings a new craving. A constant crave is for tuna sashimi and chicken katsu from Hiro's restaurant in Petaluma. Our oncologist said it was ok for her to have the sashimi now and then- but Millie could eat it every day. We are holding her back to 3 times a month.

She only drinks milk and water-which was true before cancer as well.

The weather has changed here in Sonoma County, and my outlook has thankfully brightened. I was hit pretty hard with "THE DARKNESS" in the hospital last week. I think seeing Millie in angel garb took me to places too dark and deep to escape. I wrote my new friend Jen, whom I met on Facebook and whose son Noah was diagnosed with Ewing's 1 month before Millie, and asked how she kept the darkness away. She wrote me a long and heartfelt response, including this line: "...the only feeling I can give anymore is love. It's not dark. It's easier than dark." I try to keep this in mind, as I realize that when I go to dark places in my mind it is really out of selfishness and fear- neither of which I can show to Millie during this time.

So, with the sunnier weather comes more outdoor time. I am trying to run a few times a week and am getting my road bike in shape for a first ride this Sunday. We are gathering a Milliways team for the upcoming Beat Sarcoma fun run on April 25th. Join us! Beat Sarcoma: Fun Run 2010 - Keep the date!