1 day of chemo down!

Today was our first day of chemo. Here was the rough schedule:

• Left around 7:45am, 30 mins later than we wanted to, and we paid the price with a 1.5 hr commute downtown. Originally wanted to get to Lurie by 8:30, but got here more like 9:15.
• 9:15am - Audiology appt first thing, to establish a baseline b/c cisplatin will most likely affect her high-frequency hearing.
• 10:30am - Clinic visit with our neuro-oncologist and APN, to discuss how she's doing, what to expect, etc.
• 12:30pm - Move to the 17th floor to our room, where we'd be for the rest of our stay.
• 1:30pm - Start the pentamidine (pneumonia vaccine) for 2 hrs
• 4:30pm - Get her hydrated in prep for cisplatin/lomustin/vincristine
• 5:30pm - Administer the chemo cocktail. Cisplatin is infused over 6 hrs, so she's still on it.

Overall, not a bad day. It went by somewhat quickly, and Soph was in good spirits for most of the day. She ate ok, not great, and was generally pretty agreeable to everything today. Much different than our 18-day stay back in Dec. The iPad kept her company, as did some sticker books, and her little sister who came between 4-6:30. Thank you all for your prayers, I'm pretty convinced they made a difference.

Tonight might be rough though. They have to monitor her urine very closely b/c that darn cisplatin also could negatively affect her kidneys. I found it ironic that they kept saying we have to flush the cisplatin out, but I was thinking, then why are we putting it in her? It's to get it to do its job, which is to kill rapidly dividing cells, like any cancer cells, but try to get it to avoid good rapidly dividing cells. They do not have a good answer for that, which explains things like hair loss, lower white blood cell count (all rapidly dividing cells).

Tomorrow is mostly a monitor/hydrate day. We do not anticipate she will have much of an appetite. In fact, we've made the decision to put her on TPN (total parenteral nutrition), which will give her everything she needs thru her port. This will be 12 hrs/day, given at night. Means she will be hooked up to a pump overnight . Getting her to eat has been the single biggest daily/hourly/minute challenge, and this will give all of us a break of sorts.

We hope to be discharged late in the afternoon. Soph has been asking about RM House from back in Dec, so we will try to get her over there after discharge so she can check it out and play a bit. We'll probably be home early-mid evening, assuming no complications/delays.