The Briefing

Yesterday was a perfect example of a reality we must come to accept. "Things always take longer than expected."

We expected to be home by about 2:30 after our morning EKG and treatment briefing with our pediactric oncologist in Oakland - yet found ourself in rush hour, holiday traffic all the way to Petaluma. We will have to take this lesson to heart as we, in our control-freak way, try to schedule our coming months with a big shiny finish line planted firmly on August 15. However, our finish line is tethered to balloons, and may float closer, farther away, or completely out of reach. We cannot control it.

We learned the treatment schedule- which will be 6 cycles of alternating 3-day VDC (Vincristine-Doxorubicin-Cyclophosphamide)treatments with 6-day IE (Ifosfamide-Etoposide)treatments. After 6 cycles, (about 3 months), the tumor should be shrunk considerably (and die, we hope) to give significant margins to the surgeon who will remove it. After the surgery, she gets a 2 week break from the chemo, and then will be back on for 8 more cycles.

Along with the chemo drugs, she will be givin MESNA, which I think is an anti-nausea drug. She also will have to get nightly injections of G-CSF that promotes white blood cells. We are not thrilled about giving her a shot every day! Each weekend she'll have to take a round of pills 2x each day (Fri-Sat-Sun) to combat a type of pneumonia that preys on the immune compromized.

In other news-she has a 30% chance of having a normal onset puberty and normal fertility. She has a 30% chance of late-onset puberty but with normal fertility and has a 30% chance of having hormone and fertility problems. Also, the chemotherapy treatments may cause other cancers later in life. Although this has found to be extremely rare in pediactric patients.

She is scheduled for surgery to install the broviac line on Monday at 2:30pm- it will be a long day since she can't eat anything after midnight. The first chemotherapy will start that evening. She'll be 3 nights in the hospital for this first time.

She is doing well today, and her pain is managed by the Codeine. We did get a perscription for morpine as well (zowee!)- and will administer only if she is in the kind of pain we saw her in a few days ago.

Oh- if any of you have a cute shaped beanie or fitted cap knitting pattern in a size for a 5 year old, please send along. I went to the Knitterly in Petaluma looking for some patterns for hip girls caps- but got a little overwhelmed, and was too emotional to talk to a sales person about what I was looking for. I'd like to find something that goes down to the nape of her neck in back - like a 20's style cloche hat.

We're off to an afternoon of holiday cheer at my parents- both my and Brian's families will be there together this Christmas Eve. We are so grateful for our families, and their close proximity!

May your dreams be of sugar plum fairies bringing sweets, joy, and hope.